My World of Autism and More

Dear Mr. President

2011-03-17T10:40:00.004-04:00

Dear Mr. President,

I am writing for your help. April 2nd is World Autism Awareness Day. I am asking for your help because my son has Autism. He is a wonderful, smart, sweet, and loving boy; however, he is often defined by 1 word…Autistic. 1 in 91 children in the United States are on the Autism Spectrum. 1 in 91. And that number continues to grow. What happens when those children become adults? What does that mean for our country, our economic future, THEIR future? I'm sure you are aware, but here are just a few more U.S. statistics:

US Facts:
1. A new case of Autism is diagnosed every 20 minutes.
2. There are 24,000 new cases every year.
3. The economic impact of autism is more than $90 billion and is expected to more than double in the next decade.
4. Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
5. There is no medical detection or cure for autism.

Staggering, aren't they?

Mr. President, on April 2nd, I am asking for your help. I am asking for you to light up YOUR house BLUE to show your support, your compassion, your awareness for our children and the many adults who are currently living with Autism, not just in the United States, but around the world. Many international and national landmarks will take part in lighting up blue on April 2nd all around the world. I will be changing my outside bulbs to blue as well, for the month of April. I am hoping someone will ask me WHY? I am hopeful that if you, Mr. President, light YOUR house blue on April 2nd, many millions of people will ask WHY? And the conversation that is so much needed in our country will begin.

We need much more than just your support, Mr. President. We need insurance reform. We need funding for further research into environmental factors that may contribute to the onset of Autism. We need help. But all we are asking for on this day, April 2nd, is your support for our families and our fight for our children as we help them overcome their struggles to communicate, understand, and be accepted.

Mr. President, you are a father, and I wonder what you would do if one of your daughters were affected by Autism? Would you simply change your bulbs to blue for 1 day/night for them? I am positive that your answer would be ‘Yes”. The spectacular thing about lighting up YOUR house blue is that it will reach millions of people, and millions of people will become educated, and education leads to acceptance and compassion for our children.

Many mothers like me are asking you this one favor on April 2nd. Will you please stand up with us in support of our children and light up YOUR house blue?

Thank you.

F you.

2011-03-07T09:43:00.002-05:00

Holden has only officially been evaluated once by the public school system - which was shortly before he turned 3 years old. Since he will be 6 on April 10th, and since it has been 3 years since the last eval, they have done another one. Over the past 2 weeks, they have sent home all of the evaluation results separately. I always have a white envelope with "The parent of Holden Block" on the outside. Friday, they sent home a pretty comprehensive one, detailing his IQ level, etc. His Nonverbal IQ is 93, Verbal IQ is 59, for a Full Scale IQ of 75. I know it's a large descrepency between the Nonverbal and Verbal - but, hey, he has communication problems, so, of course it is. Also on Friday, I got the notice for his IEP meeting, which is this Wednesday, March 9th @ 8:30am. Joy.

Today when I dropped him off, his aide handed me yet another white envelope. This one showed another evaluation and its results. The results of this one? That my almost 6 year old is at a 3 year, 1 month level in development.

F you, Monday. F you, this week, actually. And F you, Autism.

Dr. Andrew Wakefield responds....

2011-01-13T13:44:00.002-05:00

Click on the title of this post to go to Dr. Wakefield's response to the recent "allegations" of his study regarding children with autism and vaccines. We need more people like Dr. Wakefield in the Autism community.

Medical journal: Study linking autism, vaccines is 'elaborate fraud'

2011-01-06T09:14:00.004-05:00

This article (linked in the title of this post) pisses me off for a few reasons. First of all, releasing a story like this now - while the push is being done for flu shots - is coincidence? Maybe. Maybe not. It's a fact that more people are choosing to delay vaccinations, or deny them all together, especially the flu shot. Another reason this pisses me off is the statement made by Dr. Max Wiznitzer, which goes a little like this..."Unfortunately, his core group of supporters is not going to let the facts dissuade their beliefs that MMR causes autism," Wiznitzer said. "They need to be open-minded and examine the information as everybody else." First, Dr. Wiznitzer, this study never shaped my opinion of vaccines or what happened to my child. And I know I cannot be alone in saying this. I didn't even know about this study until after I watched my son regress in a mere 48 hours after receiving 4 vaccines in 1 doctors visit - which he was sick and running a fever, I might add. I was assured that he would be "just fine". He wasn't. I have been looking for answers since then as to what happened to my son? Why was he talking and then stopped? Why was he healthy, and then all of a sudden has horrible stomach issues? Why did he no longer interact with me? I had a lot of questions, and no one seemed able to answer them, and frankly, didn't seem interested in helping me find the answers to those questions.

So, the fact that Dr. Wakefield conducted a study with 12 "subjects" where some information may have been altered? Is that really the issue? I don't think there are millions of parents basing their decision on to vaccinate or not to vaccinate on this ONE study and Dr. Wakefield's opinion. I think their decisions are based on information they have gathered from talking to other mothers whos children have been affected by vaccines. And other medical professionals who cannot clearly and definitively tell you that vaccines have nothing to do with Autism.

For example: Hannah Poling (http://www.cbsnews.com/8301-31727_162-20015982-10391695.html). Time magazine states: ...(T)here's no denying that the court's decision to award damages to the Poling family puts a chink -- a question mark -- in what had been an unqualified defense of vaccine safety with regard to autism. If Hannah Poling had an underlying condition that made her vulnerable to being harmed by vaccines, it stands to reason that other children might also have such vulnerabilities."

So, although I guess you could qualify me as a supporter of Dr. Andrew Wakefield (simply for putting this out into the media and forcing questions to be asked), his small study that has costs him his medical license and has made the front page of CNN news, I make my decisions about vaccine safety based on the facts - from other parents, from court cases, from my experience as a mother raising a child with Autism.

Thoughts

2010-12-19T08:32:00.003-05:00

I have a confession to make. I haven't even logged into my blog in over a year. But I had a conversation this morning and it brought back some memories of old feelings and thoughts and it made me realize that I've finally gotten "there".

When Holden was first diagnosed, and even for the 2 years that followed, I always wondered how other mothers did it. How they didn't stress or obsess constantly about their child's future. How they accepted things and took the "let's make the best of it" mentality. I just thought there's NO way I'll ever be okay with not knowing about his future and where he will be when he's 18, or 19, or 20.

Over the past year, a lot has happened. My marriage ended. The kids and I have moved back to Florida (home). I'm living in a small town I said I would never come back to settle down in (which, by the way, I'm not settling - I'm moving back to Orlando in the summer!). But, anyway, you get the point. A LOT has happened.

But, something else happened, too. Holden started typical kindergarten this year. I'll be honest and say the only reason I chose public school for him this year is because I want to apply for the Florida McKay Scholarship, which allows funding for private schools, and also gives you more freedom of where to send your special needs child. And, in order to apply, they have to be in public school for 1 year. So, I chose this year. I thought it would be better for him. Kindergarten, the children are still somewhat accepting of disabilities, and aren't as quick to make fun, and laugh at other children. So, those are my reasons for doing it. However, whatever the reasons are ... the fact remains that HE IS IN A TYPICAL KINDERGARTEN CLASS. I never thought I would say those words 3 years ago. He's having some challenges, sure, but overall, he's managing. And, he's adjusting slowly, but he's still adjusting.

Which brings me to my conversation I was having this morning. Someone said to me "it wasn't supposed to be this way". I had an Oprah "ah ha!" moment. Because, it's never supposed to be this way. No one knows that better than me. Holden wasn't supposed to have autism. He was supposed to be my boy, my oldest boy, who grew up to go to college (University of Florida, preferrably!), be a doctor, get married, and give me grandkids. But he didn't. So, I've had to make some adjustments myself over the past 3 years to the way I think. It's no longer about my insecurities, it's about overcoming them.

I think I'm finally "there". At that place where I take things one day at a time. And, a place that I've found acceptance that even though "it wasn't supposed to be this way"...it is this way. And I've learned to accept autism. I'll NEVER like autism, and I'll also NEVER give up on overcoming autism. But I've accepted it. And I've also accepted a very uncertain future for my boy and the fact that my life's mission will always be to make my children's future as certain as I possibly can. For example, I read about a new study last week where researchers have found that a drug that's approved to treat tuberculosis may also increase social skills in people with autism. I emailed the doctor who is overseeing the clinical trial and offered my son as a "guinea pig", so to speak. I asked if they were doing a clinical trial on children his age. She emailed me back immediately and said they were starting with an older population and then focusing on younger children after that trial is complete, and they are extremly hopeful that this will help people affected with autism. I told her to save my contact information.

So, instead of stressing about Holden's future, I have decided to do everything possible for him - and do what used to come the hardest for me. Wait and see. I think I'm finally "there".

Wishes

2009-11-06T15:05:00.004-05:00

It's been almost a month since I've updated. And then, it wasn't really an update; but more of a rant about the numbers of Autism that had been published by a new study. Everytime I see something like that, and it seems to "shock" people - it's extremely irritating to me. Because, DUH, we know. Those of us who live it, breathe it, and dream it ... already know the numbers. We already know how many lives are affected. It's everyone else who has to catch up.

I was dropping Holden off at school today and I realized to myself that I think the same thing every morning. As he's getting out of the car and his therapist makes him say "bye, mom" - I think to myself how I would do anything to make things easier for him. I would give up everything that makes me happy, if he could be a "typical" 4 year old and not have to work SO hard at absolutely everything he does. That's the part that seems so unfair. He's been "working" non-stop since he was 2 years old. All because learning doesn't come naturally, all because he was chosen, for whatever reason, to be an example of what Autism really is.

He continues to make progress, and every once in a while, I get a slight glimpse of what he would be like if he didn't have Autism. He's done a few things that seem so "typical", I guess you could say. I can't help but want so much more for him though. I celebrate the small things, such as him getting excited when he's playing with a toy and saying "OH MAN!" as he plays, or him handing another kid a toy and saying "here you go", or his eyes looking into mine and him smiling. Simple, everyday things that kids just instinctively DO. Simple things that are so hard for him to just learn how to do.

I was reading something another mom wrote, where her son with Autism asked her "Mom, will I get married one day?", and something in my heart ached. I've often wondered the same. Holden's future is so uncertain, and I've tried to learn to live one day at a time; but sometimes, I can't help but wonder what his future will be like. Will he have friends? Will he go on dates? Will he have a girlfriend? Go to college? Work? Will he be happy? I hope, hope, hope that the answer is "yes".

seriously???

2009-10-05T11:40:00.004-04:00

Click on the title (seriously???) for the link to the CNN video:

FINALLY, something in the news to create some sort of "panic" among the CDC. Course, we'll have to wait and see what they do about it. I'm thinking they'll wait until these numbers double, or even triple, before they choose to really do something about it. Because, doing something about it ... means they will have to look at even more possible causes of autism. Environmental factors, overloading a child's system with too many vaccines too soon...and we all know the CDC and AAP will never allow that to happen.

Instead, they'll excuse it away. "Better diagnosis", "more awareness", "doctors are more willing to diagnose a child with autism today". We've heard it all, and will continue to hear it all until we all stand up and keep asking questions and making a 'stink' about these crazy numbers!

Mr. President - YES, we DO have a healthcare crisis in this country. We have an epidemic. It's caused AUTISM. 1 in 91 children. 1 in 58 boys. And as these numbers continue to GROW at an alarming rate? We can expect even more than 1 in 58 ADULTS with autism in our future. We haven't seen anything yet ......

Doctor's Visit

2009-09-16T11:17:00.002-04:00

Yesterday we saw our DAN doctor for the first time since May. Appointments had to be cancelled and rescheduled, etc...so, it's been a while. The doctor said "he has a lot of potential, and great emerging skills, but we also need to become more aggressive in his treatment because he's 4 and a half now." We're going to do an IV on Friday. EDTA + DMPS challenge test. Then 2 weeks later, another challenge test with suppositories (EDTA+DMPS). In the meantime, we'll also check his urine for yeast.

But,

That statement - the one about him being 4.5 now? Hit me like a ton of bricks. I can't get it out of my mind. He's FOUR AND A HALF. Almost 5. 2 and a half years ago, I thought that by now, he would at the very least...be talking. As in, having a conversation with me. He's not.

He's made progress, yes. And I'm very thankful for that. But, today? I'm hanging onto hope by a thread. And all the smaller threads that make up that 1 thread - peeling away 1 by 1. So, in reality, I'm hanging on to hope by less than a thread.

Proof.

2009-07-29T07:56:00.004-04:00

Some people say it's "crazy", and there's no "evidence" that supplements help a child with autism. And, any parent who's pursuing biomedical intervention will tell you that those people are the one's who are crazy. We've seen the ups and downs that directly corelate to supplements & yeast medications. The past 5 days have shown me just how dependent Holden is on his supplements and medications. He came down with the flu on Saturday, and hasn't been able to tolerate his many vitamins, supplements, and anti-yeast meds for 5 days. In those 5 days alone, he has regressed to not responding when his name is called, complete echolalia (no spontaneous language), and living in his own little world. I wasn't able to chelate this past weekend, either, because of the sick he's had going on. I see such a big difference in him; there's no doubt in my mind that he's very dependent on these supplements/vitamins/meds.

That being said, he's still the same loving and most gorgeous child on the planet. He's just "with us" much less that he normally is.

Today, I hope to get him back on track with his daily doses. And, I hope it takes less time for him to return to us, than it did for us to lose him, again (5 days). Cross your fingers!

Autism & Chelation - Dateline NBC

2009-07-23T07:24:00.001-04:00

Click on the title.

Well, it's been a while ....

2009-07-22T19:39:00.002-04:00

I haven't updated much lately. Holden started a new school exactly 2 weeks ago today. The first 5 days or so were used for assessments. I met with his lead therapist last week to go over the results. And, not surprisingly - he exceled in some areas, and was deficient in others. Hello, Autism. He scored high in Play Skills - which is great, actually. He also scored high in Immitation Skills - which is another great one to have. He was low in Manding (requests), Labeling, and of course, Conversational Communication. Again, hello Autism.

So, his treatment plan is written. Here's a snapshot:

- Requests for various items and activities using verbs varied 2-3 word phrases.
- Follows 1 step instructions within functional contexts (ex: get your lunch, stand up, clean up, etc.) to increase receptive understanding of language
- Receptively identifies actions, both in pictures and real-time
- Matches non-identical objects or non-identical pictures in a messy array of 5-8
- Receptively identifies items based on single feature, function, class, then moving on to 2-3 component FFC's (ex: Which one is the red food?)
- Increase overall vocal output through verbal imitation of a set of functional words that are frequently used in daily routines (ex: open, go, yes, no)
- Receptively identifies various attributes of different items (ex: big/little, wet/dry, long/short, etc) using objects and pictures
- Answers basic safety-related social questions (wh-questions)
- Develop fine motor skills in preparation for handwriting through activities such as lacing, stringing beads, using tongs, etc.

Social & Play Goals:
- Spontaneously attends to peers during play situations
- Initiates physical interaction with peers
- Engages in sustained social play with peers
- Spontaneously responds to the mands (requests) from peers
- Spontaneously mands to peers
- Line up upon request to leave an area without additional prompts
- Respond to group instructions in the presence of 2-3 children
- Sits with peers for at least 10 minutes while attending to materials and/or teacher

I'm optimistically hopeful.

Aside from starting school, he's been having a bit of a regression period going on for the past 2 weeks. His focus is pretty much non-existent right now. Today's been better. But, the past 2 weeks have been a challenge. It's so hard to watch him do SOOOOO well for months at a time, and then out of nowhere, he just slips. Almost like it's a cruel game of "back and forth". Like, someone allows us to see a snapshot of what he 'could' be like, and 'should' be like, and then they come and take it away without warning and he's back to not responding to his name, stimming, and displaying classic autistic symptoms.

Even though it's been 2 years, it's no easier to watch him during these regression periods than it was the first time I realized he had autism. I guess it never does get easier to watch your kiddo "check out".

So, I'm hoping the next time I update - I'll have some kind of miracle to report.

-R

real play! (cont.)

2009-07-02T21:54:00.002-04:00

OHHHH, forgot to mention something in my last post. During bathtime, Jackson loves pouring water on Holden's head. Course, Holden doesn't necessary love when he does that, but anyway. The point. The last couple of nights I noticed Holden looking over at Jackson when he pours water on his head ... then taking the cup and doing the same thing to Jackson! So, I'm going to consider this "real play", too. He's interacting ... back and forth.

real play!

2009-07-02T21:34:00.002-04:00

And, I mean ... full-on giggling, laughing, hiding, more laughing ... PLAYING with Jackson this week. I was going to blog about it on Monday, but wondered if it were just a fluke. Sometimes you think they really get something and then the next day you wonder if you were in fact dreaming. Not this time! At least I don't think so anyway.

Holden started bringing a blanket out of the bedroom and hiding under it. He would take the cover off and say ... "there he is!". Jackson wanted in on the action so he started tackling Holden while he was under the blanket. I expected a scream from Holden, which is his normal reaction to Jackson messing with him. But, instead, he started laughing. Cutest thing. Then he would take the cover off and say ... "there he is!" and just laugh and laugh (while looking at Jackson the whole time). He's done this everyday since Monday. So, no fluke. He's playing, appropriately, with his brother.

Also, today in the car Jackson was crying. I noticed Holden look over at him with a look of curiosity. Once Jackson stopped crying, Holden started giggling. Then they were both giggling.

It's like they're FINALLY becoming "partners in crime".

I love it.

summertime

2009-06-28T08:29:00.003-04:00

I haven't had much time to blog since school let out for the summer. 3 kids keep you very busy, to say the least.

I don't really have a lot to report with Holden. He's doing well, although now it's very slow, steady gains. As compared to big "wows" we were seeing. I'm not sure which is better honestly. The big "wows" tend to take you aback a little more, just because maybe you aren't expecting it. But, the slow, steady gains make me believe that he's just continuing to learn and progress on more of a regular basis. Make sense? Well, if not, it is early this morning and I have had only 1 cup of coffee so far.

He has been attending the ESY summer program through the public school. He goes M-Th, from 8-noon. They aren't teaching any new skills. Only focusing on maintenence and making sure he's retaining all he learned and mastered throughout last school year. Well, I decided the last couple of days of school to call our insurance company to find out if it covered any ABA therapy at all because I wanted to supplement the summer school program with additional therapy. And let me tell you, it has turned into a major shocker! Seems that our insurance falls under "Texas mandates", instead of federal mandates. Which, apparently, is GREAT. Over the past few weeks, I've found out that Holden will be able to attend a wonderful ABA clinic FIVE days per week, from 9am - 4pm!! And, our cost? We pay a one-time $50.00 copay. Insurance picks up the remaining amount. Crazy, I know. I wasn't expecting it, at all. So, I'm going to remove him from the public school summer ESY and put him into the clinic fulltime. I'll re-evaluate in a month and a half to see how he's doing there before I decide if I'm going to keep him in the clinic or put him back in his classroom. I love his school and it's a great program, but, we only have 2 years until he HAS to be enrolled in school in the state of Texas and I'm very hopeful that if we're aggressive enough, he can enter in a regular/mainstream classroom with the help of an Aide. So, I will keep you posted on how he does at the clinic. His start date is July 8th.

We are still chelating. Once a week, using EDTA + DMSA. Last week, I only did the EDTA because he seemed restless and didn't want to push it. He ended up sick for 2 days after chelation night. Not sure if it was because of chelation or just a virus he picked up somewhere. I've heard of some kids getting sick after chelation because of the redistribution of the toxins. I gave him charcoal last week, twice, and it seemed to help a little.

Well, looks like the little chickens are up for the day, so more later!

Here's a few pictures of our summer "adventures" so far (in HOT AS HECK TEXAS)

fork

2009-06-10T11:58:00.002-04:00

Ok, so, for any parent of a typical 4 year old, this will no doubt ... NOT be exciting. But, for those of us dealing with a child with autism. VERY exciting.

This morning, Holden was eating his scrambled eggs. When he was done eating, he did his usual routine of putting his plate in the kitchen. (Learned that at school). He left his fork on the table. So when he came back into the room, I pointed to the fork and said to him "Holden, can you put your fork away, too?" and he looked at it, said "OH!", ran over to the table, grabbed his fork, and put it in the kitchen. He came back all "smiley" and sat next to me.

Why is this exciting? Well, 1. he actually looked at where I was pointing. 2. I only gave the direction ONE time. And, 3. He followed the direction!

End of School Update

2009-06-04T14:48:00.001-04:00

So, little Miss Zoe got ALL A's for her final grades. ALL A's. Very proud of her!!!

Holden's update is as follows: (his is different than just grades, so I have to update all of his "objectives" individually)

GOAL: Holden will master the skills needed to effectively communicate.
Comments: Holden has mastered 18 motor imitative responses this 9 weeks. He has also mastered 5 new mands (signs with vocal approimations) and acquired at least 5 to learn. We will continue to target new mands next school year and he will work to maintain his mastered ones in ESY (summer school). We have tested 15 tacts (signs wtih vocal approximations) and will target new ones next school year. He can echo an approximation to at least 15 words and has mastered 3 this nine weeks. We will add new echoics next school year. Good job!

GOAL: Holden will improve fine and/or gross motor skills
Comments: Holden has mastered these objectives for this school year, we will target new objectives next school year. Great work, Holden!

GOAL: Holden will improve cognitive skills
Comments: Holden has mastered 11 visual performance skills this 9 weeks and has become a master at basic puzzles. He has also mastered 6 new receptive language skills this 9 weeks! Holden works very well at the table and is okay if reinforcement is delayed after completing a skill. Great job, Holden!

GOAL: Holden will improve personal-social skills
Comments: Holden attends the entire circle time, transitions well and participates in singing and doing the actions. He makes occasional eye contact and will attempt to copy new motions the teachers are doing. Holden will play nicely with the other students, occasionally taking something they have if he likes it. He takes turns nicely and is not disturbed by the other children. Great playing & singing, Holden!

GOAL: Holden will improve daily living skills
Comments: Holden is a pro at the backpack routine, we no longer prompt, as he seems to be prompt dependent when we do so. He occasionally needs physical guidance for reaching the basket to get his folder out, but can do the routine independently. Good job!

GOAL: Holden will increase positive behaviors and/or decrease negative behaviors
Comments: Holden's tantrums have decreased substantially this school year. He has also dropped his stimmy circles, only engaging in them on occasion. He will still get mad when told "no" to lining up toys, running off the playground, or sitting inappropriately. This is all age-appropriate and we expect to see continued progress next school year. Way to go, Holden!

Last day (almost) of school

2009-06-04T10:42:00.002-04:00

Just a few pictures from Holden's last day of school party yesterday. Today's actually the last day ... but the party was yesterday. He's done so good - I almost can't wait for school to start again so that he can continue to learn more!

enhansa update

2009-06-02T12:02:00.001-04:00

i hesitate to write this ... cause, i'm sure i'll jinx something. but, holden seems to be finally adjusting well to the enhansa. i still think he may have phenol issues; but so far, nightly epsom salt / baking soda baths seem to be helping (a lot). i was already doing epsom salt baths, but not religiously. now, i'm making sure that EVERY night, he has at least 2 cups of salts in his bath and that he sits and plays for at least 15 minutes. i haven't seen any red cheeks since last week, and he's definitely talking more. i have no idea if that has to do with the enhansa or not. he's doing a lot of scripting and singing songs from his movies/tv shows. which, hey, if it's language of any kind, i'll take it right now! we'll work out the details later! he's also showing that he understands (at least somewhat) certain emotions. jackson was crying this morning and i said "holden, tell jackson "don't cry"") and he said ... "jackson, don't cry" in a really sad voice. like he knew that crying was sad. he's also been pretending to talk on the phone. he'll walk in the other room and make the sound of a phone ringing and then put his hand up to his ear and say "hello"....then...."have a good day"....and then...."bye". i tried having a pretend phone conversation with him, but haven't gotten that far yet.

so who knows. i may increase his dose by 75mgs and see if i see anything different.

enhansa

2009-05-21T19:21:00.004-04:00

I decided to start the Enhansa last Saturday, even though we have family in from out of town. I started with a 150mg. dose...75mgs in the a.m. and 75mgs in the p.m. The stuff (powder) is yellow/orange and just smells nasty, so it took me some trials to find a way to get it into him. I put it in his juice for the first 2-3 days and that didn't work. He probably didn't even get 1/2 the dose on those days because I just couldn't get him to drink his juice. So, I decided to try it in some organic, all natural, maple syrup. I mix it in with about a teaspoon full and then give it to him. He seems to tolerate it much better that way. I tried it in apple sauce and he gagged every single time. So, instead of torturing the poor kid - I tried the maple syrup. For now, that seems to be the way to go.

Negatives - I'm pretty sure I've seen some die-off the past few days. His stimming has increased and his eye contact has decreased. I've been fighting the die-off with upping his dose of Biotin everyday, and even giving activated charcoal on the second day. It seemed to help.

Positives - The negatives have decreased as of today. We are now on day 6 (although, the first 2 days were probably useless because he wasn't taking the juice). The eye contact is back, and he's much easier distracted from the stimming. He's sleeping better, too. Yesterday when I picked him up from school, his teacher told me he had spontaneously labeled some cards they were cutting out. She said one of his teachers was sitting at a table and cutting out picture cards and he walked over and started labeling them (correctly). Now, he does that at home occassionally, but apparently hasn't done it yet at school. She said that typically means he won't have to stay in the communications class and will eventually move out and into the support center, before heading to a regular class. Of course she's only speculating, but, it's nice to hear the "hope".

I told her that we would work on things over the summer and she acted a little concerned about him progressing TOO much - she doesn't want him to not qualify for services next year. I tend to agree with her. Yes, I want him to progress - and quickly. I want him to be happier and able to communicate, of course! But, I know that we need intense therapies for the next 2 years, or he'll have less of a chance of fitting in with his peers at some point. So, I don't want them to pull him out of this classroom because he wouldn't get near the intense ABA that he's getting there. So, it's a catch 22, I suppose.

So, will report more next week (or sooner if needed) regarding the Enhansa and the results.

Oh, I almost forgot!! Today, he said "Hi Uncle D" when his Uncle walked in the door. Yes, it was prompted, but stringing 3 words together .... as far as I'm concerned, that's a sentence.

DAN! Update

2009-05-12T13:17:00.003-04:00

We had a DAN! appointment yesterday. Labs looked good, although Holden may be slightly anemic. Which isn't surprising, since his diet is pretty limited. We will keep a watch on that and see what his numbers are next time around.

Will continue to chelate using EDTA & DMSA combo 1x/week for now. If we think he's plateauing, we'll consider 1-2 IV's per month, and suppositories 1-2 times per month to see if we can kick things in gear! But, for now, sticking with suppositories.

I'm going to start him on Enhansa on Friday. We're to start out at 150mg per day for 2 weeks. If we see improvements, he wants us to stay at that dose. If no improvements, we can increase a little at a time until we do see 'good things'.

We are going to do a 1 month round of Diflucan to see if we can get the yeast markers down. Then, we'll return to Nizoral. Sometimes I think if we could just get the yeast under control - we'd see some major gains. But, chelation will always stir up yeast ... so as long as we're chelating, we have to deal with yeast issues as well, unfortunately!

So...we march on!

the normal ups and downs

2009-05-10T20:07:00.003-04:00

As it normally is with autism, just when you think things are worse than they've been in a long time - this kid comes out of it overnight. Literally, over night.

Yesterday, Holden was still having an increase in "autistic symptoms". Stimming, lack of eye contact, not interacting with us as much, etc. Today, he has been a different kid. The only thing I've done since yesterday? Chelation. Last night, we chelated with 1 DMSA suppository and 1 EDTA suppository. DMSA at around 8:30pm, and EDTA at 9:15pm. Typically, for Holden, the day after chelation is a challenge. Then he eases out of it by the 2nd day. It was different this time. Today, he woke up happy. He was playing with Jackson, and more importantly, he wanted Jackson to play with him. He wanted Jackson to chase him and they laughed and ran throughout the house. He was singing, playing, smiling, and loving. So different than how he was even just yesterday.

Who knows why. I don't know if it's possible for it to be caused by the chelation last night. I suppose it could be...maybe we just got a great pull with this round? Or, maybe he just felt better today, physically.

Whatever it was ... it made my Mother's Day the best ever.

downer

2009-05-07T10:21:00.003-04:00

I haven't felt much like posting lately, which is why there's no updates since 4/24. The past week - 2 weeks has been challenging. Holden's symptoms have gradually gotten worse over that period of time. As of yesterday afternoon, he's extremely defiant, angry, looks as though he hasn't slept in a week (even though he IS sleeping), quiet, unhappy, unable to focus, and has lost a lot of eye contact. I am praying this "regression" doesn't last too long. I have a couple of theories as to why this one's happening, but then again, I could be wrong. This may just be another "healing regression" that he will come out of on his own. It's just that this one's lasted longer than the one's previously. Yesterday afternoon, I "fought" with him for hours because he would climb up on the arm of the couch and jump off. Might not sound too bad, and kind of "typical" for his age ... but we have a tile floor. And he wasn't bending his knees to brace himself for the "fall" - he would stiffen up his legs and I was so scared he was going to break an ankle or something! I tried telling him "no!" numerous times (which normally works for him), I tried putting him in time out, I tried sitting in his way so he couldn't get to the arm of the couch. He would just try climbing over my head. No matter how many times I would take him down and tell him "NO!", he would wait unil I was 10 feet away and do it again. It was exhausting. When Dietrich came through the door, I went out of it. I went for a walk and stayed gone for an hour. I just needed to get away.

My ideas:

- Yeast. We've been chelating now for 2 months using EDTA + DMSA on a weekly basis, using suppositories. Before we began this round, his OATS showed extremely high levels of yeast, so we treated with Nizoral for a month before starting chelation (and we're still using Nizoral).

-He's been off the NuThera for 2 days now because I haven't been able to order it yet. But, NuThera is just a multi - so, would it cause this much of a reaction to not be taking it??

-I've given him OoO twice since Saturday - just a few drops at a time. ?????

-Sensory input? That has nothing to do with the being tired, etc. But, the jumpping off of the couch and landing like that - kind of 'shocks' the legs and joints. I thought about this this morning, so I'm going to check into our OT benefits.

????????

daily data sheet from school today

2009-04-24T17:26:00.001-04:00

"Holden did awesome listening today and played with his friend from class on the playground, saying "ready, set, go!" on the slide."

some updates from school

2009-04-24T12:33:00.004-04:00

I received a great "daily sheet" home yesterday. It simply said "Holden did very well working at the table today and he was perfect on his manding."

That may not *sound* like much to most people, but it's a lot for us. Manding is asking for the things that you want, making requests. Basically, it's teaching him that by talking or signing for things he wants ... he can get them.

So, I emailed to ask for a little more explanation and here's her response:
---Manding is requesting items and when Holden works, he gets to request some of his items that he likes. He didn’t need prompting on any of them today. We still pair sign/vocal although his approximations are getting better. The items he is manding for unprompted are cereal (dry cereal and his cereal bar), cookie, cake (muffin), pretzel (struggles both with sign and vocal), juice, light, candy, chip, chicken and bubbles. He mands for other items intermittently and needs some prompting to ask for them. They are fish (fish toy), circle (poker chips to put in a container), face (happy face toy), boat (wooden Noah’s ark), and other toys. I am starting to have him mand for other things in his lunch such as his “meat” (lunch meat) and “sandwich”. Unprompted mands are a good thing and will lead to his manding for things that are not present, but he is motivated for (the “MO”).

I emailed her back and asked how many words or approximations she thinks he has at this point. This is her response to me:
---I would have to look at his book, but unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say , but his Kaufman objectives is around 8 and they are getting better too. He does interrupt during speech and we have a procedure for it, but he loves saying his words and gets in a hurry. For example, we will present the word "eat" and as were saying it, he interrupts and starts to say it too. We have to say "wait", put up a clipboard, count
to 5 and re-present the word. It works very well. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.

Let me just pull out the high points of that email conversation, as far as I'm concerned.

1. Manding is requesting items and when Holden works, he gets to request some of his items that he likes. He didn’t need prompting on any of them today.

2. Unprompted mands are a good thing and will lead to his manding for things that are not present, but he is motivated for (the “MO”).

3. unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say. (I think his unprompted is higher, so I'm going to create a notebook to keep track of everything he says that's unprompted).

4. he loves saying his words

5. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.

The update couldn't get much better in my eyes.

Jim Carrey's Article re: Vaccines

2009-04-22T17:54:00.001-04:00

Click on the title of the post to read the article. It's worth the time!

YES!!

2009-04-16T21:22:00.002-04:00

So, I sent this to a friend of mine as an update on our DAN! appointment today. I realized I needed to add it here, too.

The appointment went well. I realized a LOT today. Remember a few weeks back (3/26, to be exact), when I sent you that message and I was just so down about things? That Holden was stimming nonstop and staying up late and regressing and I just couldn't figure out what was going on with him? What I was doing wrong, etc? Well. I have a friend in Orlando who's son went to the same ABA clinic as Holden. We became friends and have kept in touch and she told me a while back that her son would have these episodes of "regression", and then once it was over, he would always make these huge leaps in progress. She realized they were "healing regressions". That during chelation, his body was dumping metals and toxins into his blood stream and causing him to feel horrible (thus, the stimmy, not sleeping, irritability, etc...). And once he was able to rid his body of those loose metals/toxins, he would come out of it and make those great leaps and bounds in development. I understood what she was saying ... but didn't really understand, ya know? So, it hit me today. This is what happened with Holden. It has to be. It was HORRIBLE this last time around (the week of 3/22-3/27). I felt hopeless, helpless. But, in the past 2 weeks or so, I've seen some major improvements. Major. And, in the last 3-4 days, I've just had this feeling. This "gut" feeling, if you want to call it that. The feeling is ... I just KNOW he's going to be okay. I know it. I feel it. I sense it. I see him, now. He looks at me and I can see him, and he smiles and I know that he's coming back. I told my husband 2 nights ago that I just know in my heart that he is going to be okay. That we are going to get him back and he's going to be OKAY.

So. We saw Dr. Rao today and he asked me how he was doing. I said "I'm cautiously optimistic because he's been doing great over the past few weeks." Holden was in the room, sitting on the floor, talking to himself. He looked up at Dr. Rao and Dr. Rao looked at him, and then Holden said "Hi". Then he started talking to himself. Dr. Rao pointed to him and said to me "THAT is an excellent sign." I said ... "what do you mean, what's an excellent sign?" And she said that the way he was talking to himself ... using consonant/vowel combinations, and singing to himself - that it was an excellent sign. He said that in the thousands of children he's seen, he's seen that many times in children who RECOVER. He said that the progress he's making and what I've described and what he sees himself ... that he feels he's beginning to finally heal the inflamation in his brain and beginning the healing/recovery process. He said that fortunately, there are those children who do begin to heal/recover and from his experience, they do not go backwards. They continue to progress over time. And, unfortunately, there are those kids who just never hit that point of beginning to heal/recover.

He said .... recovery. recover. heal.

I could've kissed the man!!!! And almost did.

We had a blood draw to check his liver function (because he's on daily anti-fungal medication, which can be unusually harsh on the liver), and we did an IV 'push' of glutathione - which is a natural anti-oxidant. Kids with autism have very low levels of glutathione.

Holden didn't cry once. Didn't scream, or fight me. He sat in my lap and said "no", but that was it. They sprayed him with a numbing spray and he just watched a movie and was the bravest little boy.

We're continuing the chelation every week. It's working. Something's working. Maybe it's the chelation. Maybe it's the ABA therapy at school. Maybe it's the many people praying for him. Maybe it's a combination of all of it? Either way, I'm not willing to stop any of it.

I know there will be days. I know he will regress. It happens. It needs to happen to heal his body further. And, I know there will be days when I'll send you "woe is me" messages and need a little extra support from anyone I can get it from. But, right now? Today? I'm going to just take it all in and I'm just soooo incredibly thankful that a doctor AGREES with me. He sees it, too. He's given me more hope and motivated me even more.

A doctor is giving me hope. Wow. What a great idea!!!

playing

2009-04-14T10:13:00.004-04:00

I've noticed over the past week that Holden's been playing more appropriately. He and Jackson have been running around the house, chasing each other. For ex, this morning while I'm running around like a crazy person, trying to get 3 kids dressed and 2 of them off to school...I look over and the boys are on the couch. Not sitting, but standing. So I tell Jackson to sit down and he does. Then Holden looks at him and smiles and sits. Then stands, looks at Jackson and Jackson grins and stands. Up and down and up and down. But, the point is that he was LOOKING at Jackson. Interacting with him. Yesterday after school, I noticed Holden chasing Bella (our dog) around and laughing. Then, Bella was on the couch next to me (wanting protection from me, obviously) and Holden grabbed her and tried to "hug" her. Course, Bella's afraid she'll get broken, so she got away from him. I think we need a dog that will play back! 2 nights ago, I put a blanket on the floor in our room, which is where Holden typically falls asleep at night, with one of the music channels on TV. Jackson was in there with him and the next thing I know, I hear Jackson crying. So, I go in to investigate and Holden's laying on top of him...smiling and laughing. Poor Jackson was crying! I realized that Holden was just playing with him. Dietrich lays across Holden sometimes because he loves deep pressure. I guess Holden thought Jackson should learn to love it too. Ha. I'm scared to be so optimistic, because I know there will be more regression. It comes with the journey. But right now, I'm just enjoying him being a little boy and playing with his brother! And laughing! Here's a video of some laughing and interacting:

Four

2009-04-10T20:51:00.005-04:00

Holden turned 4 today. Wow, I still can't believe it. 2 years ago, this week, we received the diagnosis of PDD-NOS (autism). I remember it like yesterday. I wrote a whole post about remembering that week, and the weeks prior - when we realized what was going on with him. But, I decided to delete it. I won't focus on the past anymore, but rather look forward to the future. So, this is going to be a post about positive things! About how far he's come and how far he WILL go.

I was thinking this morning, after I gave Holden a cupcake (GFCF, of course) for breakfast that I honestly could not remember his 3rd birthday. I know, I know, it's horrible. But, it's true. I remember thinking when he turned 3 that I had no idea who my son was. I didn't know his likes, or dislikes. I don't know if I even bought him a gift - although, I suspect I did. I just can't remember what it was, or if he liked it. He was so incredibly lost just 1 year ago. I think I spent most of his 3rd birthday crying, to be honest.

About a week leading up to this birthday, I started having a bit of panic. I didn't want another birthday to go by and him not understand. Or, for me not to know what to do to make his day "special". I decided to just go with it and I planned a little birthday celebration with his class at school and his teacher was all for it. So, yesterday I took in cupcakes and a few goodies for his classmates (who are also all autistic) and Jackson and I went in to celebrate with him at school. His teachers were there and also his speech therapist. I remember she said to me "everyone loves Holden here - he's such a special little boy!" And I honestly felt like she meant it. Holden LOVED everyone singing Happy Birthday to him. He even tried to sing along, and got the biggest smile when we all clapped afterwards. It was almost as if he realized ... HEY, this is for me!! Afterwards, they had planned an egg hunt and I thought to myself ... this should be fun. I'm sure he won't "get it". I know, optimistic of me, huh?! But, we went outside and I showed him an egg on the ground and told him to pick it up and put it in his bag. He did! And then, he looked around and saw more. He picked up the rest all on his own and had so much fun doing it. I was so proud of him.

This morning, he had cupcakes for breakfast. He got a tricycle-type bike to ride and loved it. I think he really loved the noises, lights, and all the buttons, but still - he liked it! He and Jackson PLAYED this morning, too. They were chasing each other and although it only lasted for about 5 minutes ... they played. Together. And they were both laughing. Together. We then took him to lunch at a Gluten-free restaurant. He actually ate the food, which surprised me. He's a bit picky, or so I thought. But, apparently I was wrong, he tried a few things and seemed to not have any trouble with it! Then, we all had yet another cupcake to celebrate his day.

Then, off to the Wiggly Play Center. I was a little concerned about taking him there, too. Would the other kids freak him out? Would the noise bother him? Would he just do "stimmy walks" around the place and touch the walls? The last time we took him to a place like this, he had absolutely NO interest. That was about 8 months ago. Well, I'm happy to report he loved it! He had a blast (and so did Jackson). He didn't play with other kids, but then again, none of the other kids were playing with other kids either! He went through all the tunnels, bouncy houses, and slides. We bought him a Wiggles hat and shirt and left for home.

He was beat after today. He's now in bed, sleeping like a baby...but, a baby who just turned 4. Some words and phrases I heard from him today:

"Jackson, NO!"
"Happy birthday"
"Wiggles"
"Cake!"
"More cards" (for his language builder cards)
"pee pee in the potty"
"I love you"

There were probably more, and I just realized while typing this that I don't know if I can even keep count of his words and phrases anymore! Which is soooo exciting. This time last year, I didn't know if he would ever say a word, to be honest. Although, most people can't understand what he's saying ... I can. And I know he's talking and I know he's trying to say more. I also know what he likes. He loves the Wiggles, Little Einsteins, his language builder cards, balls, slides, his new trike, beads, puzzles, being outside, hugs, kisses, tickles...and the list goes on. I know my kid. I know who he is now, and although it's taken 2 long years to get to this point, it's so worth it now.

He has come so far in the past year and I am so very proud of him. I know he works incredibly hard, for such simple things that come easily to other 4 year olds. I also know that the next year will bring many more UPs...and also a few downs. But, I am committed to his recovery and I will not let him down. We're healing his body, one day at at time.

So, happy birthday beautiful boy! We love you more than words can say. A few pictures from his special (2) days!

huh.

2009-04-08T13:54:00.003-04:00

When I picked up Holden from school yesterday, I assumed I was right. The other shoe DID drop. They said he had a few tantrums, which isn't typical of him. He screamed when redirected and not allowed to line up a few toys. So, I was prepared when I got home, and sure enough...when I took away his language builder cards (because he wasn't looking at the pictures or labeling them, they were all over the floor) and offered him a book/magazine instead, he freaked. Screamed and started scooting around on the floor - which is what he does when he's mad, apparently. It lasted for a good 10 minutes or so, then he calmed down and ate dinner. He was in bed at the regular time, for him, around 7pm.

The one thing though that hasn't stopped is his spontaneous language. He had a few behavior issues yesterday - which like I said - is not normal for him. But, he maintained the "more verbal" part. When Jackson does something he's not supposed to do...Holden will now say "Jackson, No!". It's appropriate, and really is when Jackson's doing something he shouldn't be doing.

One thing I did notice yesterday. (Those of you who wish to NOT discuss poop should log off now). I could tell yesterday that he had to go poop. He will do a "poo dance", as I call it. I could tell he needed to go and he went to the bathroom a few times, but didn't go. This morning, he FINALLY went. And seemed a lot happier afterwards (aren't we all?!). So, makes me wonder if yesterday, he was in pain and just frustrated easily because of the discomfort? I've decided to monitor his progress a little more closely to see if after a few days of not going - what his behavior is like. Could be something. Could be nothing. As usual, you never know.

waiting for the other shoe to drop

2009-04-07T11:17:00.005-04:00

We typically chelate on Friday nights. We're supposed to be using a combo of DMSA and EDTA (2 suppositories - 20-30 minutes apart), but lately, I've only been able to get 1 in and disolved well enough that I know his body has absorbed it. We're going to look into changing his chelation schedule when I see his doctor on the 16th. I'd like to begin chelating twice a week, instead of just once.

I've noticed the past 2 weeks (we've been chelating going on 4 weeks now), that when we do it on Friday ... his Saturday's aren't so great. He acts as though he doesn't feel well all day Saturday and is somewhat "out of it". I'm assuming his little body is just not feeling well, seeing as it's detoxing. BUT, then, by Sunday - the change is really just short of amazing. Sunday's he's happy, smiling, enteracting, great eye contact, etc. etc. etc. He tries to verbalize more, too. Sunday, we went kite flying and he absolutely loved it. There was a ravine close by in the field and he would go to the edge of it and when I called him, he would stop dead in his tracks - look at me - and come back. He never once tried to run away from me, and listened when I told him to "come here" every.single.time.

so happy!

he LOVED the ladybug we found.

When we got home, I told him, completely out of habit, to "take off your jacket". I turned and he immediately started to unzip his jacket and take it off. He typically doesn't follow simple commands like this, but Sunday - it was as if he understood everything I said and followed the directions I gave him. This week, the "good" has lasted up to now. Yesterday (Monday) morning, he went into the other room where Zoe was talking to me and said ... "Hi Wo-wie!", he can't quite say "Zoe" yet. Needless to say, Zoe was as surprised as I was. He's said that before, but only after prompting. This was full-on-spontaneous-language. Then this morning, while I was getting him dressed, he kept hugging me and laughing and playing and looking RIGHT at me for more than the typical 1.5 seconds or so. He was just so happy and animated. ANIMATED. My kid. The one with autism.

So, now, I'm just waiting for the other shoe to drop. I know that he will level off today or tomorrow, if history is a predictor of the future. Then we start all over on Friday with chelation and hopefully see the gains again by Sunday. I can't help but feel that if we could keep his body detoxing and get him "cleaned out" more than just once a week, we may be able to keep the "good" for longer than Mon-Tues or Wed. That's the goal of our doctor's appointment on the 16th - to figure out how to keep him on a high, most of the time.

Note: So far, yeast seems to be under control.

oprah

2009-04-07T11:12:00.003-04:00

I was watching yesterday's Oprah last night (thank god for DVR) and it was a show on motherhood and how difficult it is. Mother's were discussing all of the things no one ever told them about being a mom. How they are always exhausted, have no time for themselves, and just how hard the "job" of motherhood really is.

I listened to the moms on the show, and I couldn't agree with them more. I think being a mom is the hardest thing I do and have ever done. I also think that having a child with autism increases that by 100%. Not only am I a mom, but I'm also my son's advocate, therapist, teacher, and nurse.

It made me wonder. If Oprah had a studio full of mom's with children on the spectrum, what would that have been like?! Because, although motherhood is incredibly tough, it's also the most rewarding experience of my life.

World Autism Awareness Day (WAAD)

2009-04-02T10:44:00.002-04:00

Today is World Autism Awareness Day. It's really unlike every other day for our family, as we're reminded of Autism...every. single. day. But today, I don't feel as alone because I know there are so many families uniting together to bring more awareness to Autism. I have made a choice to devote myself to the cause, to raising awareness, to helping people understand the disorder, to finding a cure. I pray that my son will be one of the lucky ones who recover from Autism. If he does, I know that I will never give up fighting for other children and families who suffer. If he doesn't ... Well, I won't say "if he doesn't", because I will never give up on his recovery.

Support WAAD. If you know someone who has a child with Autism, or is affected themselves - show compassion today.

I AM SPEECHLESS

2009-04-01T13:04:00.001-04:00

click on the title of the post.

spontaneous language!

2009-03-30T16:33:00.002-04:00

so, as i'm throwing myself a pity party last week - here's how quick things turn around. autism = roller coaster.

today, i picked up holden early from school and his teacher told me that he said "bye-bye" to his classmates WITHOUT prompting. then, we got home and he climbed up on the couch and said "too off". too = shoe. took his shoes off. got up and ran to the bathroom saying "pee pee in the potty!".

since he will be 4 on april 10th, i've been hoping and praying for his speech to take a huge leap. most of his language is either prompted, or echolalia. so, any spontaneous language is great for us!!!

my kid is a rockstar.

monday

2009-03-30T11:48:00.002-04:00

so i was able to spend a little time away this weekend. i went to see a movie and "chill" by myself. it was nice. i needed it. i feel better than i did when i posted the last post. we chelated on friday night. a combination of EDTA & DMSA (2 suppositories). he was able to tolerate the DMSA this time, so that's great. i know we get better pulls when we do the combo. i worried a little that we'd have to go back to only EDTA after the first 2 tries, but this time, it was fine. so, next weekend, we'll do the same. saturday was rough, as it always is the day after chelation. thankfully, that's the day i had some time for myself. it's hard to watch him when he's having a tough time. yesterday (sunday) was better. he was more aware, and more verbal - whereas on saturday, it was tough to get him to say the things he always says ... without prompting. and yesterday evening, we were back to the 6:30, 7pm bedtime, so that was nice.

we'll see what this week holds, but i'm optimistic once more.

one of those days. the ones i hate having.

2009-03-26T14:05:00.002-04:00

So, I just sent this to a friend of mine. I'm posting it here, too, because I know there are other moms out there feeling the exact same thing. And somehow that makes me feel a teeny tiny bit better. Lucky friend, huh?!

I'm afraid I'm not much (good) company today. Today's one of "those" days. I'm questioning everything about Holden and his hopeful recovery. Are we doing enough? Should we have stayed with our doctor in Tampa? Even if we wanted to, we couldn't, because he doesn't file insurance so we couldn't afford $300 visits each month. They see patients all over the world, so being here isn't a problem. We could have phone appts. But, like I said - we can't afford them. Is there something I'm missing? A therapy? Supplement? Treatment? Did we make the right decision to leave Dr. Berger's practice? I mean, isn't it worth living out of a paperbag if we have to, to get him the best treatment possible? I feel like we're dragging along now...not making much progress at all. What am I doing wrong? Why isn't he making more progress with speech? Why is he up everynight this week til 9pm, stimming away in the bedroom until his little body gives up and finally goes to sleep because it has no choice?

I guess it's just been a tough week, transitioning back to school. I keep telling myself that it's because he just needs to get back into the "groove" and that he'll be fine and we'll continue on the road to recovery and making progress.

But he will be 4 in exactly 15 days and that scares me. I had hoped we would be so much further along when he turned 4. Two years ago, I looked at "4" and thought that he would definitely be able to understand it was his birthday by then, surely, right? And, he would be talking in sentences, and telling me he loves me, right? And he would be playing with his little brother by then, and enjoying others, right? At least a little. Those are the thoughts I had and none of them are coming true and it just really really sucks.

missing the 6:30pm bedtimes

2009-03-25T21:04:00.001-04:00

It's 8pm and Holden's still awake. SO not like him. Not sure what's going on, but I'm giving in a few days and hopefully I'll have my sleeping little angel back! uggg.

regressions? transitions?

2009-03-25T11:52:00.002-04:00

Holden went back to school on Monday after Spring Break and a visit with grandma. She was in town the whole week. He cried when I dropped him off on Monday, but was okay Tuesday and today. He STILL has not used the bathroom at school. He's holding it all day and going when he gets home. The kid must have a bladder of steel. I just wished he'd go...just once, so he could get some praise and reinforcement and know that it's "okay" to go there.

He's been coming home from school and stimming, pretty much constantly until dinner/bath/bed. He used to be out like a light by 6:30, 7:00pm. The past 2 nights, he's been up till 8, 8:45pm. He'll go to bed, but seems to lay there and stim for hours before he falls asleep.

I'm hoping this is all due to the transition of going back to school and that by tomorrow, or Friday, he will be back on track. I haven't done anything else differently, so its all I can come up with that may be causing his current issues. He's a little more withdrawn, spacey, and less verbal. He's not labeling his language builder cards as much, but merely stimming off of them - flipping through them over and over again.

Please God let this end soon! Here's to another ride on the rollercoaster that is autism...

(appropriate) spontaneous language

2009-03-17T13:43:00.003-04:00

I noticed today that Holden's saying more things without prompts. Some things he's saying now, spontaneously:

"pee pee in the potty"
"undies up!"
"pants up!"
"juice"
"cookie"
"cake"
"cards" (for language builder cards - loves these)
"book"
"tree" (while we were riding in the car and driving by trees)
"all done!"
"wash" (for washing his hands after potty)
"flush" (for the toilet, obviously)
"iggles" (wiggles)

He's labeling lots of things now, too. And taking objects and counting them (like he's doing now with GFCF pretzels). He's also copying Jackson alot. Jackson says "sissy, bubba, sissy, bubba". Holden looks at him and starts doing the same thing now. And sometimes, it's spontaneous and he just says it on his own.

Right now, he's outside sitting at a table, counting pretzels with his grandmother.

And his eye contact today? Insanely great!

OHHHH, and today, I took this picture of him. Playing with a firetruck - yes, appropriately. AND without prompting. He just went to it and started playing.

Today's a good day.

Blinders Won't Reduce Autism - By Jon Poling

2009-03-15T10:15:00.002-04:00

Dr. Jon Poling, an Athens neurologist, is an assistant professor at the Medical College of Georgia. His daughter, Hannah Poling, has been a successful petitioner in the National Vaccine Injury Compensation Program.

Blinders Won't Reduce Autism

Friday, March 13, 2009

For the million plus American families touched by autism, like mine, there is real urgency to find scientific answers to help loved ones and prevent future victims. Unfortunately, some doctors still fail to even accept the increasing autism rate as real, rather than their own better diagnosis. The collateral damage of 'better diagnosis', the idea that we are simply better at detecting autism, is the abandonment of families coping with autism by the medical establishment, government and private insurance companies.

Beyond the high emotional toll autism takes on a family, many have been financially ruined. Public school systems are drowning in the red ink of educating increasing numbers of special-needs students. Fortunately, the 'better diagnosis' myth has been soundly debunked. In the 2009 issue of Epidemiology, two authors analyzed 1990 through 2006 California Department of Developmental Services and U.S. Census data documenting an astronomical 700 to 800 percent rise in the disorder. These scientists concluded that only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear -- genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities.

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes ” vaccines” are all in the research agenda.

An inspiring new text, "Autism-Current Theories and Evidence" has successfully navigated the minefield of autism science without touching the third rail, as Dr. Sanjay Gupta aptly describes the vaccine-autism debate. Dr. John Zimmerman, who has studied autism for decades, prophetically writes, "The clinical heterogeneity of this disorder, together with the inherent dynamic changes during children's growth and development, confound static, linear models and simplistic, unilateral approaches."

Zimmerman's book is dense with cutting-edge science on cell biology, metabolism, oxidative stress, neuroinflammation, auto-immunity and brain pathology. That's right, autism isn't simply a genetic program for brain development gone awry. Dr. Martha Herbert, of Harvard Medical School, writes the final chapter defining autism in the larger framework of a multiple organ system disease with potentially reversible impairments.

As an affected parent, I am left with a sense of hope that these professionals will produce results to stem the tide of new autism cases and ameliorate symptoms of those currently suffering. On the other hand, Dr. Paul Offit, the vaccine inventor whose Rotateq royalty interests recently sold for a reported $182 million, has written a novel of perceived good and evil called "Autism's False Prophets" The tome is largely a dramatic account of why Offit, who self-admittedly is not an autism expert, feels vaccines should be exonerated in the autism epidemic. In the story, Offit takes no prisoners, smearing characters in the vaccine-autism controversy as effortlessly as a rich cream cheese. "False Prophets" has curiously garnered support from several senior physicians in respected medical journals.

After Offit's drama is complete, these cheerleaders fail to realize they have traveled the road labeled "Dead End -- No Through Traffic". In his epilogue, Offit credits autism parents who have likewise gone down the dead end path to autism acceptance, without search for cause or cure.

As both parent and doctor, I cannot fathom turning my back on a child nor science, in order to avoid inconvenient questions about vaccine safety or any other reasonable environmental factor.

President Obama has recognized that we've seen just a skyrocketing autism rate and plans to appoint an autism czar to coordinate his policy efforts. Science is moving forward to connect the three dots of environment, genes and plasticity of a developing child's brain circuitry. In the end, logic and reason will prevail over politics and profits.

update on language, etc...

2009-03-10T11:11:00.002-04:00

I haven't posted much lately about Holden's speech and how it's improving. I wanted to create a post to remind me of what's he's done lately.

About 3 weeks ago, I started something new - supplement wise. A friend told me about a "mitochondrial cocktail" and what she had done with her son - who's DAN doctor suspected a mito-disorder. Now, a while back, we had Holden screened for mito issues. His tests did show a severe carnitine deficiency. His other tests did not point to any major mito issues. However, due to the delicate nature of the tests - and the fact that they needed to be processed IMMEDIATELY to produce accurate results - I think we may have gotten a false negative. We had his bloodwork done and they had to ship off the blood to another lab - which took at least overnight. These tests needed to be done in-house, however, we couldn't find a local hospital that would do the tests in-house. So, we settled for the next best thing.

Anyway, Holden displays a lot of symptoms of a mitochondrial disorder. A list of symptoms can be seen here: .

So, a friend told me how she had started supplementing with CoQ10 & Riboflavin (Vit B2). I decided to give it a try and started about 3 weeks ago. Only giving a very small dose of both at first to make sure Holden could/would tolerate both.

Now, I'm not sure if it was just a coincidence, or if it has anything to do with it, but it seems that he's much happier, more engaging, eye contact is better, and his speech is noticably improving. He's singing along with the TV. He's using a LOT of echolalia now, and even has some appropriate responses to questions. He's labeling like crazy - language builder cards are his favorite, but labeling pictures in books, on tv, etc. Labels I've heard lately: baby, dog, pants, shirt, ball, duck, kitty cat, grass, chair, and the list goes on and on and on. He even knows his brother's name now when asked "who is this?" and pointing to Jackson. He also says "Hi Zoe", and "Bye Zoe" when she's dropped off at school and picked up. Those 2 things are prompted, but that's okay! The labeling is not prompted though.

So, who knows if it has anything to do with the CoQ10 or B2, but I'm going to continue, just in case.

potty training

2009-03-10T10:58:00.002-04:00

We started potty training, hesitantly, on February 23rd. Needless to say, I was extremely stressed even thinking about potty training. It was written into his IEP with the school district, so thankfully, I had the expertise of his teacher (ABA therapist). They follow the Azrin & Foxx method of potty training and she explained everything to me in detail before we started. There's a punishment component to this method, which is what had me the most nervous. I prayed and prayed and prayed there would be FEW accidents so that we didn't have to implement "positive practice" very often.

Well, I am happy and proud to report that 3 full days after starting the program, he initiated on his own. Meaning, he went into the bathroom (without prompts), pulled his pants down (without help), sat on the potty, and went! All unprompted. All on his own. We still had a few accidents even after the 1st initiation. And the 1st weekend at home with him was ... really really stressful for me. We only had 1 accident, on Saturday morning, but after that, he insisted on sitting on the potty for what seemed like hours at a time. I finally gave up and just let him come out when he was ready. I think, looking back, that he was trying extremely hard to avoid "positive practice" and figured if he just sat on the potty, there would be no accidents.

We made it through that weekend and by Wednesday - he brought home his official "potty training certificate"! So, he was officially potty trained. In order for it to be "official", he had to have 20 initiations (like what I mentioned above) WITHOUT any accidents. He did it! Goodbye pullups! And, technically, it only took 9 days. NINE days to potty train. It took me 9 months (or that's what it felt like) to potty train Zoe. Now, mind you, he's still not entirely BM trained ... but that's coming. And, he has gone poop in the potty plenty of times over the past 2 weeks, so he knows what he's supposed to do. He's just a tad bit scared and nervous to sit on the potty and actually go, I think. But, if he picked up on the "pee-pee in the potty", as he says, then it shouldn't be much of a problem to get everything in the potty.

I'm so proud of him.

Video

2009-02-27T13:55:00.002-05:00

Government Again Concedes Vaccines Cause Autism

2009-02-25T11:23:00.002-05:00

Click on the title of this post to view the actual article in the Huffington Post.

Luckily, the parents of this little boy took him for an MRI about 1-2 weeks following his vaccinations. The MRI showed brain and spinal cord damage, which is how they were able to "prove" that it caused his condition (PDD-NOS, which is what Holden's "official" diagnosis is, also). I read an article from The Thoughful House - in Austin, TX, where the doctor there said that what happened to Bailey Banks is what happened to thousands of children who have ASD, however, the brain damage will not show on a MRI after a certain period of time. I copied and pasted that article below this one, as well.

February 25, 2009
Government Again Concedes Vaccines Cause Autism
Mysterious Vaccine Court created in 1986 by Congress and the pharmaceutical industry rules in favor of Bailey Banks against HHS.

Los Angeles - February 23, 2009 - Generation Rescue, Jenny McCarthy and Jim Carrey’s Los Angeles-based non-profit autism organization, today announced that the United States Government has once again conceded that vaccines cause autism. The announcement comes on the heels of the recently discovered court case of Bailey Banks vs. HHS, reported on the Huffington Post. The ruling states, “The Court found that Bailey would not have suffered this delay but for the administration of the MMR vaccine…a proximate sequence of cause and effect leading inexorably from vaccination to PDD [Autism].”

In a curious and hypocritical method of operation, the mysterious Vaccine Court not only protects vaccine makers from liability but created a policy that has tripled the number of vaccines given to U.S. children – all after being made aware of the fact that these vaccines do, in fact, cause autism and repeatedly ruling in favor of families with children hurt by their vaccines.

“It was heartbreaking to hear about Bailey’s story, but through this ruling we are gaining the proof we need to open the eyes of the world to the fact that vaccines do, in fact, cause autism,” said Jenny McCarthy, Hollywood actress, autism activist, best-selling author and Generation Rescue board member. “Bailey Banks’ regression into autism after vaccination is the same story I went through with my own son and the same story I have heard from thousands of mothers and fathers around the country. Our hope is that this ruling will influence decision and policy-makers to help the hundreds of thousands of children and families affected by this terrible condition.”

Banks vs. HHS is the second known case where the Vaccine Court could not deny the overwhelming evidence showing vaccines caused a child's autism. The first was the case of Hannah Poling in March of 2008, where the Government conceded her case and awarded her family compensation.

Jim Carrey, Hollywood legend and Generation Rescue board member, reacted to the news, “It seems the U.S. government is sending mixed messages by telling the world that vaccines don't cause autism, while, at the same time, they are quietly managing a ‘separate vaccine court’ that is ruling in favor of affected families and finding that vaccines, in fact, were the cause. For most of the autism community the question is no longer whether vaccines caused of their child’s autism. The question is why is their government is only promoting the rulings that are in favor of the vaccine companies.”

Why is a secret court, which no one knows about or understands, quietly paying these families for vaccine injuries and autism? Deirdre Imus, Generation Rescue board member and founder of the Deirdre Imus Environmental Center for Pediatric Oncology says, “Over the past 20 years, the vaccine court has dispensed close to $2 billion in compensation to families whose children were injured or killed by a vaccine. I am not against vaccines and my own child has been vaccinated. But, I share the growing concerns of many parents questioning the number of vaccines given to children today, some of the toxic ingredients in vaccines, and whether we know enough about the combination risks associated with the multiple vaccines given to children during critical developmental windows.”

To help spread the word of the Banks ruling, Generation Rescue also bought a full-page ad that will run in the USA Today on 02/25/2009, which has a daily circulation of 2,272,815.

Thoughtful House Center for Children on Court Ruling: MMR Causes Autistic Disorder
Court Rules MMR Vaccine Causes Autistic Disorder
Decision Contradicts Findings in Controversial Cedillo Case

(Austin, Texas) – The controversial decision by the US vaccine court that there was no link between MMR (measles-mumps-rubella) vaccines and autism was a contradiction to a ruling issued by the same court in June of 2007. On Friday, February 20, 2009, just days after its controversial announcement denying the vaccine-autism link in the Cedillo case, the court awarded more than $3 million to the family of 10 year-old Bailey Banks (estimated lifetime support and damages) and confirmed that the child’s acute brain damage was a result of the MMR vaccine, which led to the autistic spectrum disorder (ASD) .

Although the US vaccine court continues official denials of any connection between the MMR shots and autism, it quietly settled the case with the Banks family. Special Master Richard Abell wrote that the Banks had successfully demonstrated “the MMR vaccine at issue actually caused the conditions from which Bailey suffered and continues to suffer.”

Awards have now been granted to three families because the vaccine court has decided there was a causative connection between the MMR 3 in 1 shot and brain damage in children where that damage resulted in an ASD . Vaccines have also been found to be causally related to autism spectrum disorders in 8 other cases by the same court. In the Banks’ decision, the court relied on the report from a complete neurological investigation, which included an MRI scan, 16 days after his MMR shot. He was diagnosed with acute disseminated encephalomyelitis (ADEM), a neurological disorder characterized by inflammation of the brain and spinal cord that is known to follow immunization.

“I am personally aware of many, many parents who report these exact symptoms in their children following MMR immunization,” said Dr. Andrew Wakefield, Executive Director of Thoughtful House, an autism treatment center in Austin, Texas. “Very few children with autistic regression receive the proper work-up that Bailey had during the early stage of the disease, so a possible ADEM diagnosis may well have been missed in the other children. The MRI findings often disappear after the damage has been done.”

Signs of ADEM usually appear within a few days to a few weeks after immunization or infection and often start with gastrointestinal or respiratory symptoms. The disease progresses to neurological deterioration including loss of eye contact, ataxia (incoordination), changes in mental status, delirium, lethargy, and seizures.

"The contradictory rulings from the Vaccine Court regarding vaccines and autism demonstrate that we still don't have a definitive answer," said Dr. Bryan Jepson, an autism specialist at Thoughtful House. “We need to realize that the question of MMR’s potential contribution to autism remains under scientific debate. Ultimately, the correct answer will come through honest, transparent and rigorous scientific study, not from a court bench.”

About Thoughtful House: Thoughtful House takes a multi-disciplinary approach to treating autism and supports a ‘safety-first’ vaccination policy that gives parents the option of choosing a single measles vaccine for their children. Thoughtful House is dedicated to research to scientifically determine if there is a link between MMR and other vaccines and the onset of autism. www.thoughtfulhouse.org

1) Bailey Banks suffered “Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)”. See page 2, Footnote 4. Office of the Special Master Document No. (02-0738V)
2) Misty Hyatt vs HHS: http://www.cbsnews.com/stories/2008/03/06/eveningnews/main3915703.shtml

Kienan Freeman vs HHS (01-390V): Special Master Hastings, Footnote 7. “It was noted at the hearing that Kienan’s neurologic disorder has features that might cause it to be labeled as “atypical autism” a condition within the category of “autistic spectrum disorder.”

Bailey Banks vs HHS (02-0738V)

I Love You

2009-02-21T21:38:00.002-05:00

I've been waiting sooooo long to hear "I Love You" from Holden, unprompted. He'll say it, if we say..."Say I love you". Or, if we say "I love you", we'll get echolalia and he'll repeat.

Today, I made him come to me and I told him I wanted a hug. So he threw his arms around my neck. While I was hugging him, he said "I tuh you". My response? "I tuh you too!"

I love that kid.

They're Autistic -- and They're in Love

2009-02-21T19:29:00.002-05:00

click on the title of the post - it's worth reading, when you have time.

vaccines didn't cause autism - or so they say, yet again

2009-02-12T13:56:00.003-05:00

Click on the title to link to the CNN story.

This burns me. Someone on CNN made a comment about the story and it's so true. Just like he said ... Pharm companies will always win when it comes to these battles. Because, you can't fight the system with the system. They'll win everytime.

For those of us who live "autism" everyday, we know there's a reason our TYPICAL child regressed after being sick immediately following a set of vaccines. It's just that simple. There are millions of us. Yet, they still refuse to listen. Instead, they post stories like this because (hopefully) the pharm companies are finally taking a hit because people are choosing not to vaccinate. Look at the billboards - they're all over the place. Commercials about vaccinating your babies. You wouldn't have seen these, not even a year ago. So, at least we're making an impact as parents of children affected by vaccines. As Jenny says ... STUDY OUR KIDS. Test kids to make sure they can tolerate the vaccines. It seems so simple, yet they refuse, and instead, publish stories like this so that we all look crazy.

Me = pissed.

hopes, dreams & wishes

2009-02-11T17:13:00.004-05:00

When I pick Holden up from school, they bring him (and other kids in his class) out before the chaos of the actual dismissal bell. So, I usually pull up around 2:30pm, and they bring him out around 2:55pm. Normally, Jackson sleeps while we sit and wait. There's either a middle school or high school in the area as well, and everyday, I watch kids walk by - walking home from school. They're older. Probably in the age range of 12-16 or so. Typically, it's the same kids, sometimes they're different. Today, I realized that I do the same thing each time I see them. I watched one boy, probably 14, 15 years old today, and thought to myself ... God, I pray Holden will be able to do that. I pray he'll walk home from school like other "normal" kids. I hope he'll be independent and be a "typical" teenager. I watched as this kid listened to his iPod, with his backpack on, and typical teenager jeans and tennis shoes. I wondered if he were going home to do homework? Was he going home to get online and talk to his friends? Was he going home to help out around the house (yeah right!)? What was a typical afternoon for him? And I thought, and wondered...does his mother have any idea how incredibly lucky she is that she has healthy (I'm guessing), typical children?

I have to say that I feel a little guilty for thinking these thoughts. I think it's because I've had people tell me that I should love Holden "just the way he is", and not "try to change him to be something he's not". To "accept him!".

My response to those people who think that is I DO love him just the way he is. I love him, unconditionally. How could I not? He's my child. However, I refuse to believe that my little boy is the same inside as he is on the outside. Before he regressed, he was there. The light was on. His eyes sparkled. He laughed. He smiled. His eyes lit up when he saw us come through the door after a day out. He loved his sister. He loved our dog. He played with them both. He tried to communicate.

After he regressed, it all went away. No eye contact. No happiness. No interaction. No hugs. No sparkle in his eyes. Nothing.

I know that my son is still in that little body and mind and soul. I know that the sparkle is there, the love, the hugs, kisses, interaction and sense of humor. So, I refuse to "accept him" the way he is. I will fight to get him back until I do. In the meantime, I appreciate so much, his little triumphs and accomplishments. I savor the hugs (although not often), the kisses. And, I hope, dream, and wish for his recovery, and for the day I can watch him walking home from school with his iPod, backpack, and know that he's going home to be a "typical" teenager.

holden's "report card" / iep update

2009-02-03T10:21:00.004-05:00

Instead of a "report card", Holden receives an IEP update every 9 weeks. Here it is, in a nutshell:

Goal: Holden will master the skills needed to effectively communicate.
Comments: Holden can independently mand for juice, movie, cookie, raisin, bubbles and beads using sign language and vocal approximation. We require him to sign because his vocal approximations are not clear enough for his teacher to understand what he is asking for. His prompted mands are chips, candy, pins, beads, fish and cake. He has mastered "mama" from the Kaufman Speech Praxis and is working on 3 more words. He is also working on increasing his vocal approximations of mands "movie", "candy", "cookie", and "juice". He is a star at motor imitation having mastered 9 objectives this nine weeks.

Goal: Holden will improve fine and/or gross motor skills.
Comments: Holden has done exceptionally well climbing up and down the step stool to wash his hands and rinse his toothbrush. He is already learning now to pinch the clothespins to get them on the cup and should master this objective in the next nine weeks. Holden can string 5 beads on a string and we will now work on stringing smaller beads on thinner string.

Goal: Holden will improve cognitive skills.
Comments: Holden is very compliant now, he occasionally will tantrum when asked to sit down or blocked from doing his "stimmy circles", but that is no more than 2-3 times a week. Holden has mastered matching 3 items in a field of 3 and is working on several more objectives. Holden responds appropriately when told to "come here", "get a chair", "put away your toy", and "line up at the door" with minimal prompting.

Goal: Holden will improve personal-social skills.
Comments: Holden sits for the entire circle time with minimal reinforcement and participates in at least 50% of the songs and fingerplays. He sits at the table and tolerates playing alongside the other students. He will occasionally become interested in a toy another child is playing with and touch it or move it, but if offered his own toy, will not tantrum to get it.

Goal: Holden will improve daily living skills.
Comments: Holden has made great progress with the backpack routine. He comes in the room, takes his backpack off, attempts to hang it on the hook (he is offered little assistance), unzips with help and then takes out his lunch box and walks it over to the shelf where it goes. Will will start potty training the next 9 weeks.

a little less suck-age

2009-01-20T08:16:00.002-05:00

I had an appointment with our DAN last week regarding Holden. We went over his OAT, bloodwork, and French test. The OAT showed very high markers for yeast (surprise, surprise). His French test showed elevated levels of Mercury and Lead (again, surprise, surprise). His bloodwork showed low zinc, normal liver function, and something else very interesting to me...he's NOT protected against Polio. Hello vaccines!! He was vaccinated against Polio, but apparently it did no good.

Seeing the test results, I just don't understand how people can dismiss the biomedical treatment for autism. How much more scientific evidence do you need that our kids systems are off? More so than typical children? Doesn't that mean anything to the medical community?? I don't get it.

Anyway, off my soap box. Our next plan of action is to start Zinc (1 cap per day, 20 mg), Therabiotic Complete (probiotic), and Nizoral. He's been on the Nizoral for 1 week now and there's definitely a difference. He's happier, doesn't seem to be "hurting", and his eye contact and socialization has increased. We started Zinc just yesterday, so nothing to report yet on that...as well as the new probiotic. I'll do the challenge test in the next few days. Then, 2 weeks later, we're to do an EDTA + DMSA challenge test. Our next appointment is February 23rd, where we'll discuss the challenge results and determine which chelation agent to use and how it will be administered. I'm hoping for at least twice monthly IV's, at least. The other 2 weeks, we will use suppositories.

Honestly though, it all depends on the costs of each. We want the most effective, obviously, but we have to choose the most effective that we're able to afford. I'm VERY anxious to start chelating on a regular basis though. He will be 4 in April and I have such high hopes for him by his 5th birthday. I've heard chelation takes anywhere from 12-18 months to be most effective.

On another note, Zoe and Jackson are doing great. Zoe amazes me everyday with all she's learning and the words that come out of her mouth! Good and bad. Jackson is 17 and a half months and seems to be developing completely normal thus far. He's pointing to pictures, labeling, very social, great eye contact, talking, talking, and more talking. I'm hopeful that he will be spared any developmental delays. In the meantime, we will continue to NOT vaccinate him.

More later!

today sucks

2009-01-12T10:49:00.004-05:00

I try pretty hard to get around the self-pity stuff when it comes to Holden and autism. For the most part, I'm motivated, dedicated, and optimistic for his recovery. Every once in a while, there are days when things don't seem to be going right. I think this process has really taught me to be "in-tune" with him...what he's feeling, if he's hurting, happy, etc. And today, my gut tells me that something's just not right with him. He's been off anti-fungals, probiotics, and MB12 shots for almost 2 weeks now. It's really taking a toll on him, I can tell. He's not sleeping. He's crying, as if he's hurting. He's holding his stomach. And I know that if he could just TELL me how he feels, he would tell me that he's a mess inside.

I have an appointment with our DAN today at 4:30. I have to get him back on track. I need my boy back.

New Year

2009-01-07T13:16:00.004-05:00

Happy New Year! Late, I know, but I haven't had much time to post any updates.

My mom was here for 2 days over the holidays. I can't tell you how much help it was to have her around. And of course, the kids loved it.

Holden's been going through a "rough patch" I guess you could say. He ran out of his anti-fungal (Sporonox - which I think was making him worse anyway!), and we also ran out of our probiotics (bifido-complex). We had an appointment with our DAN scheduled for December 29th, so I decided to wait until the appointment to discuss possibly changing his anti-fungal and to find out if we needed to start something for clostridia. His OAT test, French test, and bloodwork are all back, so I assumed we would be making some changes based on the results. Well, they had to reschedule our appointment to January 12th. And I haven't been able to reach the doctor since before Christmas...so he's had some rough days. I'm assuming the kid has yeast like crazy now, being off anti-fungals all together for a few weeks. His tantrums have been horrible, he's had trouble falling asleep (not like him), he's stimming like crazy. He has gotten a little better over the past 3 days or so. I started him on S Boulardii from Whole Foods last Friday. I don't know if it's making a difference. Maybe. His behavior seems better and he seems happier overall. He's sleeping a little better. Hopefully next week, after his appointment, we can start him on a new anti-fungal, and whatever else he needs. I also hope to start ongoing chelation treatments again. Not sure yet if we'll do IVs or suppositories (again). I would like to do IVs, but it's so traumatic for him, and I need to see what our insurance will pay. This is all soooo expensive, it's tough. But much needed.

Zoe's good. 9, going on 16. I'm just waiting for her to hate me everyday, instead of just every other day.

Jackson's developing normally, or so it seems thus far. He loved Christmas, and all the lights. He's talking up a storm, and I love it! Hate the screaming, but love the talking and laughing and interacting with us.

Here are a few pictures from December. Holden LOVES the camera now.

"kooooool"

2008-12-12T10:42:00.003-05:00

That's Holden-speak for "school". When we turn down the road that his school is on, I always ask him "are you ready to go to school?" So this morning, in the same place I usually ask - he beat me to it. He said "koooooool", and smiled. Spontaneous!

When we dropped of Zoe at "kooool", he said "bye-bye sissy".

Our next DAN appointment is December 29th. My mom will be in town, so that'll be nice to have her there with me. We'll discuss his latest blood test results, OAT results, and French test results. Then we'll decide on which chelation we need to use and if it will be suppositories or IVs. I'm leaning towards IVs, but we'll see what Dr. Rao thinks.

He's been doing okay, however, I'm beginning to think that the Sporonox he's taking for yeast is bothering him (in a negative way). I only give it every other day now, and it seems that on the days he gets it - in the evenings - he's VERY stimmy and very grumpy. More prone to tantrums and stims. I'm considering taking him off all together, but would like the OAT results before I do that; so that we don't have to go through another major die-off phase.

He loves: being tickled by daddy, his sister's keyboard, and the Christmas lights.
He hates: his little brother taking things from him, us stopping his stims, and not getting what he wants (pretty typical huh?!).

More later.

DTaP

2008-12-05T13:40:00.002-05:00

I haven't had time to post much lately, but will update this weekend on Holden's progress. Things are good though for the most part. Moving along, slowly but surely.

Also, we received his French test back, but am waiting on someone to tell me what the hell it all means.

I had to post this though about the DTaP vaccine. This is straight from the CDC and Department of Defense:
http://www.vhcinfo.org/subpage.asp?page=vaccines/vaccine_dtap

So, yeah. Wow, finally they're admitting that autism is an "adverse event" from this vaccine. What do you know?! We're not all crazy!!!!!

I think I love Holden's School

2008-11-21T21:58:00.003-05:00

But, I'm afraid to say it out loud for fear of jinxing it!!!

For the past few days, when he's done with dinner, he's been bringing me his plate. The first time he did it, I said "Oh, you're all done?" and he handed it to me. Then, the 2nd time, I realized there was something to this. So, for 4 days in a row, he's brought me his plate when he's finished with his dinner. He will LOOK at me and say "done". It's not that clear, obviously. But I know what he's saying.

His teacher told me tonight that they make him pick up his plate after lunch and throw things in the trash. He has to pick up after himself and put his things away. So, he's learning, AND generalizing things to the home environment.

When I picked him up from school today - they told me the school had a pep ralley for the Dallas Cowboys at the end of the day. She said it was very loud, kids screaming, singing, etc. I asked how he did with that and she said he was great! That he loved it. He sat on their lap and smiled through the whole thing.

After school today, he was soooo social. He watched the Wiggles and sang with them. He danced and jumped up and down and made animal sounds when they did. He smiles and just looked happy. He kept coming up to me and saying "hiiiiiiii!", and he would look me in the eye and smile and wait for me to say "hiiiii!" back.

Today. Was an awesome day. I do have to add that I started MB12 shots again last night. He had been off of them for a few weeks. I have no idea if it has anything to do with it...but, I have to make notes of anything we do differently. Any changes we make. We've also been on Culturelle for about a month now. And this may be too much info, but he's had normal poops for an entire month!!

I can only pray that this will continue...

Doctor Visit

2008-10-29T17:29:00.002-04:00

Today, Holden saw Dr. Rao for the first time. I spoke to the doctor last week about Holden's case, and today was his first visit. Aside from having to wait F-O-R-E-V-E-R, it went well. We discussed continuing chelation but are going to wait until we receive the lab results back. They did bloodwork today, and also an IV push of glutathione, NAC, and Vit C. He tolerated it really well - I was so proud of him! He cried, but once she got the needle in, he just sat and watched and ate his cookies. I have to send off an OAT test to check for yeast, a Neurotransmitter test, and the French test. Our next appointment is the 1st week of December. We'll discuss the results of everything and start chelating again. I'm anxious to get started again. We just finished another 2 months using EDTA suppositories about 2 weeks ago. I can always tell a difference in his attention, focus, eye contact, etc...when we're chelating. Then we stop, and it seems to all go away again. It's like the universe is playing some sick game with us. But, I know in time - we'll have him back to STAY.

He's also doing well in school. They call him their little "miracle 3 year old", and his teacher says he's doing great so far. He has some tantrums when made to sit at the table and "work", but he gets over it. Yesterday, I picked him up and he had on a cute t-shirt (that was too big) over his clothes that said "Fun Run". She said they had an event and he participated. He had a little certificate in his backpack folder that said he completed 4 laps. I asked her if he really ran and she said yes, that he had a blast running around with them. How cute is that?!

So, Dr. Rao asked me to keep a log over the next 2 weeks. Just write things down I notice since the IV today. We may need to do it every 2 weeks if he does really well with it.

More later....

in like flynn

2008-10-12T23:43:00.000-04:00

FINALLY. We have a house. We've been living with my brother-in-law, his wife, and their 6 month old for 2 months. And the house we lived in ... not so big. So, yeah, 4 adults and 4 kids, enough to drive you nutty! We found a place about 5 miles away and moved in this weekend. We don't have furniture yet, as we sold every thing we had before we left Florida. I found a couch on craigslist for $75, sleeper sofa. For now, it's me, Zoe and Jackson on the sleeper sofa. Dietrich and Holden in the bedroom on a cot-like pad on the floor. It sucks, yo. But, not near as much as it sucked trying to live in someone else's house with kids!

Holden's doing great in school. The first week, he cried every day when I dropped him off. Then by the weekend, he became "himself" again. Then on Monday, he cried worse than ever! By Tuesday, he was saying "HI!" when we pulled into the school. Wednesday, Thursday, and Friday ... more of the same. Smiles, and walking to class with his teacher after telling me "bye-bye". I love that kid!

Although he's doing wonderful in school, and still doing great in therapy (ABA), at home he's much more withdrawn. It's hard to watch. Yet, I know that it's just the changes that's going on. He's processing a lot...too much for him. And, although he can hold it together for 8 hours M-F, and then at therapy on Saturdays from 9:30-12:30 ... any other time, he's very withdrawn and to himself. I try to tell myself that he just needs 'decompression' time, and that all of this is so new to him. He's just having a hard time processing. I hope it's better, and soon.

With all that said - tonight, he climbed up on the sleeper sofa with me. Took the wooden train he has and I started saying "chugga chugga chugga chugga chugga chugga chugga chugga ... chooooo choooo", and would tickle him. After 1 time, he climbed up next to me and said "choo choo!". So, I did it again. He loved it! I love when he engages us. It really makes all this so worth it.

school

2008-10-02T16:35:00.004-04:00

I have to take a minute and brag about Zoe, first. She got her progress report today - which is the 1/2 way mark to her 1st report card. She has 5 A's, and 1 B!! I'm SO proud of her. Grades like that after a move like we've done recently, staying with family, her sleeping on the floor in a sleeping bag for 2 months, and dealing with her little brothers in the same room! I think we can all learn from her.

Holden started school this week. Today was his 3rd day. He's been placed in a "Communication Skills" classroom with other kids with autism. There are 5 kids in the class, 1 teacher who is a behavior analyst, and 2 aides. Holden is the youngest kid in there, as they can range from pre-school up to 5th grade. Today when I picked him up she called him her "miracle" 3 year old. She said in 7 years, she's not seen a 3 year old do this well the 1st week. This is what his report for today said: Holden put large and small pegs in a pedboard, copied actions on the Wiggles video & ate 2 helpings of turkey breast at lunch. I can't really explain how good it feels to read something so .... normal.

head, shoulders, knees and toes

2008-09-23T11:11:00.002-04:00

Holden's finally settling in after the move. He's doing great, actually. I always hesitate to say "great", because I know by now that these "great" episodes are usually followed by a regression at some point. But, for now, I'll take it and relish in it!

He seems to be talking more. He has some spontaneous language now. He will come to me and say "joo" for juice. Or "cookie" for ... well, cookie. He will tell/ask me to "o-pen" things for him. He'll try his best to say "fly" when he wants us to "fly" him in the air. I can tell him we're going bye bye and turn off the TV and there's no tantrum. He will get his shoes (almost always independently), put them on and go to the door. He's repeating EVERYTHING he's asked to now. In therapy, and at home.

He loves loves loves to sing. I'll catch him doing the hand motions and singing Twinkle Twinkle Little Star a lot. The only thing that's really understandable is "twinkle", but I know he's singing it. I taught him Head, Shoulders, Knees and Toes last weekend. I sang it 3 times and then he started doing the motions with him. Now he'll say "head", "knees", "toes"...but he's not so good yet with "shoulders".

Body parts - he can/will now identify on command: head, nose, ear, mouth, tummy ("tum-tum" as he puts it), and toes.

When I ask him at night if he wants me to rock him to sleep, he'll look at me - smile, and say "rock".

When we pick up Zoe from school, he will smile the biggest smile and say "HI!!!" to her. She just loves this, of course.

He's bringing me things. Which may not sound all that impressive. But, he's never brought me anything...except maybe the remote. He'll bring me his juice cup and take my hand, look me in the eyes, smile, and say his version of "thank you", and hand it to me. I just smile and say Thank you! back and he'll go get a block, or toy, or whatever else he can find to bring to me. Which is great that he's enjoying the social interaction with me.

And the biggest, most impressive accomplishment over the last month...he'll now kick a soccer ball! Independently, for the most part. Dietrich's been taking him to the soccer field nearby and we used a little ABA type reinforcement to get him started. He loves to be thrown in the air...so, we would tell him to kick the ball and sometimes help him do it, and then Dietrich would pick him up and throw him hight in the air. We've faded out the reinforcer and he will just kick the ball now...and have fun doing it! This is really cool to see, since it's something we worked on a year ago and didn't get anywhere. At all.

He's discovered his reflection. In everything. Store windows, ovens, toasters, etc. etc. etc. Because he's such a visual kid, it can be pretty distracting for him. So we're working on that. The paper shredding has diminished a lot lately, but he continues to flip through the yellow pages of the phone book a lot. I just tell everyone that he's memorizing it for me so I don't have to go online and look up numbers all the time.

it's been a long time!

2008-08-15T16:16:00.002-04:00

I haven't been able to post much. We moved the weekend of August 1st. We're now in Carrollton, Texas (DFW area). Staying with my brother-in-law and his family, so getting online is pretty scarce for me right now. Hoping and praying with all I have that we can get into our own place soon. But, for now, we'll deal.

Update on Holden. Last time I wrote, we had just done a challenge test. Those results showed elevated lead (again), and some mercury - although not elevated this time. We had a doctor's appointment the day we left Florida and Dr. Berger suggested that we continue with the suppositories. We are going to do another 2 month round of suppositories, then a challenge test, and we'll see where to go from there. At that point, I'm planning to start IV chelation. I knew it would be too hard to do that when we had just moved.

Speaking of the move. The first week was pure HELL for us. Holden came down with a stomach virus the night we left Florida. We drove straight through, and he puked straight through. It was horrible. Once we arrived, it just went from bad to worse for him. Although he slowly - and I mean VERY slowly started to feel better physically - he was having a really hard time with a new place. Everytime we would drive up into the driveway, he would cry. Everytime I tried to bathe him, he would cry. He cried pretty much constantly for the first week. He wanted nothing to do with us, except for when we left the room. Then he would chase us, as if he was afraid we were leaving him in a strange place. Slowly, he began to get better, and now that we've been here 2 weeks - he seems to be adjusting. No more crying. No more than usual, anyway. I'm beginning to see my happy little boy again.

The first Saturday we were here, we had to take him for bloodwork to check his levels. Most importantly, his liver function. He's on sporonox everyday, so it's important to make sure his liver is functioning as it should be. We're awaiting those results.

We also stopped the TD Glutathione cream. Instead, we moved to Glutathione suppositories. He gets one everyday. And, every other day, he's getting the EDTA as well. So, every other day, he gets 2 suppositories. Thankfully, he doesn't really fight me anymore. Poor kid. I think he just knows there's no use in fighting me on it...it's going to happen anyway. He does really well on IV Glutathione, so I'm really hoping he responds well to the suppositories too. I think he will. Last night was our 1st EDTA suppository for this 2 month run. He seems to be okay so far today. I am making sure to supplement the extra minerals, as well as the Taurine. Hopefully that will help.

We have an appointment with a place in the area called The Woodall Foundation for Kids on Tuesday. They will do a Speech eval, as well as an ABA eval. He'll be receiving services through them, but I'm not sure how many hours quite yet. We got his discharge summary from Quest Kids in Orlando and it was great to read (see). Here's an excerpt:

During his time at Quest, Holden acquired an abundant amount of new language and gained numerous age-appropriate skills. his vocal repertoire developed from babbling to and 3 to 4 one-syllable letter sounds to 2 to 3 syllable word approximations and nearly 20 letter sounds and combinations. he acquired several new mands, vocally as well as with manual signs. Holden also learned new gross motor imitations including clapping hands, stomping feed, and holding his arms out in various positions. Holden acquired the receptive identification of several body parts, and correct responses to some intraverbals including animal sound sand appropriate vocals for play. The most notable amount of improvement was made in the area of object imitation. Over the last eight months Holden's rate of acquisition also showed tremendous progress. He went from acquiring approximately 7 new skills each month to nearly 12 per month. Holden is a very bright little boy who made magnificent progress in a very short amount of time.

So, it felt great to read that and realize that I'm not crazy. My son is improving. It may be slowly, but we knew there was no quick-fix when we started this journey.

More later!

challenge test

2008-07-20T08:16:00.003-04:00

We're done with the first 2 months of chelation. So, yesterday, we did a challenge test. We haven't done one of those in about 3 months. We used a 750 mg. EDTA suppository. I had forgotten how hard the challenge tests are on him. For the first 3-4 hours after I gave him the suppository, he wanted to do nothing but sleep. You could tell he just felt horrible. His little cheeks were red and flushed. He wasn't interested in anything, really. Just wanted to lay down, or be held and rocked.

BUT, about 6 hours after I gave him the suppository, he was a different kid. After dinner and bath, he danced and jumpped and ran around and smiled and hugged us. He was happy, full of dimples! He even said a 3 word sentence: "I want beebee". He would say it before, but mostly just with prompting. Last night, he said it independently - a few times.

We noticed similar behavior after he had some IV's a few months ago. It lasted for a few days after the IV's. This morning, it seems to be going back to normal. He's ripping up his paper and walking around the house, feeling the walls. His 2 favorite things to do.

You know, even if it was just for an hour or 2, it's so worth it - seeing him act like he did last night. When he does that, you can see HIM. You can tell he's in there somewhere. And if we could just get him out, we would see the real him more times than not. That's the goal...so we'll keep plugging away.

notes from therapy

2008-07-20T08:12:00.002-04:00

Friday's notes:

Therapist 1:
-Great job with upside "down" today. The thumbs up is still hard, but his pointing looked amazing. Object imitation was correct every time! Echoics were pretty good today. "A" was wonderful. He was more verbal than I've ever seen him! A lot of singing along with the movie.

Therapist 2:
-Super smiley today. Great job with mixing up all different object imitations. Independently led me to the ball pit room! Great "up" and "go". Lots of independent signs for raisin. Needed help with the vocal. Worked on interspersing labeling juice v. ball v. beads.

Inappropriate behaviors:
None!

one day at a time

2008-07-14T19:53:00.002-04:00

I have always been a worrier. I worry about everything under the sun. Most of the time, I worry about things that haven't even happened yet. I worry about things that "could" possibly happen. I worry about the future.

One thing living with autism has taught me is to just take one day at a time. Live for today, concentrate on today, celebrate all of today's moments, and not worry about what tomorrow will bring. It's hard for me, because, like I said, I've always been a worrier!

Here's an example. We're moving to Texas. My husband's switching jobs. He's being laid off from his current job, but we're not exactly sure when. He's interviewing in Dallas at the end of this week and hoping he gets an offer. Before Holden's diagnosis, if I were in this situation, I wouldn't be sleeping. I would be worrying. Worrying about WHEN exactly we were moving. Worrying about imposing on my brother's twin brother and his family (because we will be staying with them for the first few weeks we're there, until we find a place). I would be a mess. BUT, lucky for me, my son's diagnosis has taught me that it doesn't help to worry. It doesn't help to not sleep. It doesn't help to worry about things that just haven't happened yet.

I've mentioned this before, but, when we first got the diagnosis a little over a year ago, I didn't sleep or eat or do much of anything for 2 solid weeks. I lost 11 lbs (and was 2 months pregnant), cried 23 out of the 24 hours in a day, and had dreams about my son and his future for the 1 hour out of the day that I did sleep. I worried about him having friends one day, going to birthday parties, going to the prom, having a girlfriend, a job, a family.

Then another mom told me something that stuck with me and still does to this day. She said "Forget what you're feeling. Forget that you're upset. Forget your feelings, for now anyway." She said that I have to focus ALL of my attention and efforts on Holden's recovery. That I have to be strong, at least for the next few years, while we go through this journey. She couldn't have been more right...

And, little did I know that it would teach me patience and to relax when it comes to everything in my life. So, that's what I try to do.

marathon

2008-06-25T14:28:00.002-04:00

I was talking to another mom today at therapy. She was telling me that during the first 3 months of her son's chelation, she wasn't sure she was doing the right thing. She said he had some behaviors he wasn't having prior to chelation, and that other behaviors that he previously had, actually got worse. Now that she's 6 months into chelation, she's glad she stuck with it as he's making great progress and she's excited about the possibility of his "recovery".

Another mom on a message board I belong to made a comment about how this isn't a sprint, but a marathon. That some kids will have to undergo chelation for years before they are well enough to be considered toxic-free.

We've been doing chelation for not even 2 full months yet and I'm already telling myself that I can't expect too much at this point. Holden's making progress, whether it's directly related to the chelation, or the therapy, or the multiple supplements, or the anti-fungals, who knows. I do know that 6 months ago, getting him to imitate anything was nearly impossible. Now, he will watch the Wiggles, or Sesame Street, or another video - and attempt to do what they're doing. Most of the time, it involved music and dancing. He loves music. He will also "do" most anything you ask him to do, if you show him first. We haven't graduated to actual one-step commands on much yet though. He will clap if you tell him to clap, and he'll put his arms up if you say "arms up". But, most of what he does, you need to do first. It's progress, nonetheless.

For the past 24 hours, he's been extremely stimmy. Wanting paper. He will shred it into long strips and then drop it...pick it up, later, rinse, repeat. He'll do this until we step in and redirect him. The redirection only lasts for a few minutes though, and then he's wanting his paper back. I gave him the EDTA suppository last night around 11:30pm. So, this morning, I've given him some charcoal to see if that will help with his focus. We'll see if it helps.

It's so hard to watch him go through this battle and know that you can't do anything (very much of anything, anyway) to help him feel better. I hope and pray that one day he will be thankful and not resentful that we've put him through all of this.

not just good, but a GREAT day (so far)

2008-06-20T11:39:00.004-04:00

Holden had been a bit whiney and just kind of "spacey" last week. I always know that once he goes through something like that, he always comes out on the other side with improvements. It's just waiting through the low times that gets to me. Yesterday, my mom showed up for a few days to stay with us. He hasn't seen her in a month or so. When she walked in, he went straight up to her, hugged her and sat in her lap for at least 10 minutes. Just hugging and loving and kissing her. Today in ABA, his therapists were SO happy with him. He was asking independently for raisins, to "sing", to be bounced on a bouncy ball, to be tickled, etc. Also, 2 of his therapists were having a conversation while he was watching a movie and one said to the other "his shoes (he had on crocks) are on backwards". They both kept talking about his program and she said the next thing she knew, he was taking off both shoes - switched them to the right feet - and then put them back on. Crazy. Apparently not only did he hear them, but he comprehended what they were saying too.

He's loving "If you're happy and you know it" right now. Here's a link to the video I shot on Friday:

We've been doing EDTA chelation suppositories since May 11th. Maybe, just maybe, they're beginning to help!? Whatever it is, I'll take it!

Wii

2008-06-13T07:54:00.002-04:00

We love the Wii in our house. Especially Zoe. Anyway, yesterday, Zoe and one of her friends were doing Wii Fit. They were doing Yoga poses, and I looked up to see Holden looking at her, then the tv, then her, and smiling. Then he started trying to do the pose, too. Gross motor imitation, yay!!!

I was doing the step aerobics with Wii Fit and he was trying to step with me. Again, most imitation! He's been doing great with that lately.

He's also saying the sounds of the letters with Leapfrog's Letter Factor DVD. He's had it for months now, but he's just starting to do all the sounds. I've decided to let him watch this one at least twice a day...

Suppository day today. Although I hate putting him through it, I also look forward to suppository days because I know it's helping.

life

2008-06-05T06:39:00.002-04:00

I can't believe it's been a month since I've posted. Sometimes I don't know where the time goes. Really.

Zoe's last day of school was yesterday. I can't believe she's a 4th grader now. I swear, she just started kindergarten!!! Hopefully she'll have plenty of friends to hang out with this summer so I don't have to drag her to therapy every day. Sometimes she doesn't mind, but for the most part - she'd rather be playing. Can't blame her. I'd rather be playing, too.

Jackson's all over the place now. He wants to walk, but he's just not quite there yet. I took him for his 9 month checkup yesterday (although he's almost 10 months). He's in the 60th percentile for height, but only 25th for weight. Overall though, he's meeting all of the developmental "milestones", so that's the most important thing at this point. Oh, and he wants me ALL.THE.TIME. Seriously, he's a big mama's boy. Which I guess makes sense - he's with me 24/7.

Holden's doing...okay, I suppose. We've been doing the EDTA suppositories since May 11th. He's tolerating them well. We've recently started Carnitine and Biotin. He's been extremely stimmy lately. Lots of visual stims, and some verbal stims as well. He's always been a visual kid, but lately, it's much worse. But, he seems to be doing well at therapy. Some whining during transitions, but who doesn't whine during transitions? I know I do.

They've worked in a potty break into his program at Quest. They take him to the potty every 30 minutes now (for the 2 hours he's there) and make him sit on it. They sing songs, he sits and does the hand motions to the songs while he's on the potty. Last week, I got him to actually PEE in the potty twice - both times were 1st thing in the morning. So, maybe he won't be so far behind on the potty training after all. We'll see.

I can't remember if I posted about this before or not - but he's also finishing songs now. Filling in words to songs like "Twinkle, Twinkle Little Star", "ABC's", and "Itsy Bitsy Spider". He'll also try to count along with you when you count. At therapy last week, they did a small circle time with 3 kids. All around Holden's age. All with 1:1 therapist with them. They sat, had a book read to them and then had to answer questions...such as "Where are your eyes?", etc. I didn't see the 1st circle time. His therapist said he had some trouble at first...cried for a few minutes, but then settled down. The 2nd time, I sat in. I was really pleased with what I saw. He sat and did Mr. Potatohead - and followed simple directions, like, "put his eyes on", or "put his shoes on". It was nice to see. If someone would have asked me if he would/could do that, I would have probably said no. But, now I know he can! We're going to incorporate some of that into things at home, too. So, hopefully he'll just get better and more comfortable with it.

More later!

aaaand more slacking

2008-05-09T06:19:00.002-04:00

I can't believe it's been as long as it has since I've updated. Sometimes my days get away from me and before I know it, it's time for bed and to get up and start it another day all over again.

We had an appointment with Dr. Berger on the 1st. We reviewed all of the recent labs. There were some red flags for mitochondrial dysfunction, so he's suggested we have the remaining labs done to confirm. I haven't been able to do that yet, but plan to take him in on Monday.

Other new things: We started Biotin - 1/2 cap twice a day. This is to help with the yeast issues, hopefully. We lowered his Sporanox to 4 ml. from 8 ml. and are hopeful that with the addition of the Biotin, we can keep the yeast monster away. So far, so good. We're going on the 2nd week, and I haven't seen any bad/negative behaviors which would indicate that Mr. Yeast Monster doesn't want to stay away. We're also going to start Carnitine after I get the remaining bloodwork done. This will help his Carnitine levels, which were SIGNIFICANTLY low. I've heard from some moms that supporting the mito dysfunction has been a saving grace for them - and they've had some great progress. I'm hoping for the same, obviously. We also started ongoing chelation. I've been waiting for this to happen, so I'm glad it's finally here. It took almost a year. We started biomed in May 2007, and started ongoing chelation in May 2008. So yeah, a year. Wow. We decided, based on his challenge tests, to use EDTA suppositories. He gets 1 every other day, 350 mgs. each. After 8 weeks of this, we will stop for 1 week and do another challenge test with a 750 mgs. suppository. I'm hopeful, but I know it's a long road and expect to be chelating for months, possibly years.

As for how he's doing, he's been doing great actually. Here's a recent note from therapy:

- Programs: Probed a lot of gross motor, fine motor & object imitation skills as well as some 1 step instructions to add to his program. Great discrimination with identifying eyes, nose, head. Stack blocks was better today with different blocks and transferred well to the blocks I was using yesterday.
-Communication: Independent mand for "go" ("toh" and sign) when leaving the bathroom this morning. Lots of independent "m-ooo-eee" and the end of session (for "movie"). Needed prompts in the beginning. Echoics sounded very good.
-Inappropriate Behaviors: 0 1st hour, and 0 2nd hour. (YAY!)
-Potty Information: Sat on potty for 2 minutes while playing with slinky. Then changed wet diaper. Pulled up pants independently.

So, he continues to progress. Slowly but SURELY. He's trying to sing along to songs now, too. He will try singing songs on TV, and will also fill in words to "Itsy Bitsy Spider", "Old McDonald", and "ABC's". He's asking independently for "paper".

The chelation is tough, on me and him. I hate having to give him suppositories every other night. Add in the MB12 shots ever 3 days, and I'm always having to mess with his little bottom! I just hope he thanks us one day. More later.

slacker

2008-04-25T15:15:00.002-04:00

I've been slacking lately, keeping up on things here. Actually, I've just been busy as hell. Dietrich's been traveling NONSTOP for the past few weeks with work and I've been trying to be a single parent and it just sucks.

So, here's an update on everything:

After a horrible week last week, Holden's been WONDERFUL this week. I don't know what brought about the change. The only things I've done different - I backed off of the Taurine, and I did a DMSA suppository challenge test on Sunday. But, as it always seems, anything he has a period of regression, he always comes out of it better than before he went into it. One of the pieces of the puzzle I guess. His therapist said today that he's done great all week. He even initiated play today for the 1st 15 minutes of his session. He went into the ballpit room and played and worked in there without any problems or wanting to leave that room for 15 minutes. She said he also initiated going into another room (he has problems with transitioning from 1 room to another at the clinic) by going up to a door and saying "open". When I got there to pick him up, he looked at me and said "pee". He kept saying it over and over and then laid on the floor. He's done that twice this week at home and it didn't occur to me that he would know he needs a diaper change. But, after it happening again today, I'm convinced he's telling us he needs a diaper change! He's also looking into my eyes a lot this week. Almost as if he's really studying me. Doesn't make sense, I know, but he's really looking at me. So, it's been a good week for Holden.

I took Zoe to the GI doctor on Wednesday. She's still having episodes of nausea / vomiting. The last 2 episodes (last Friday and today) have just been nausea, thankfully. The doctor brought up Cyclical Vomiting Syndrome. She said the only way to diagnose it is to rule out EVERYTHING else. So, we're having an MRI done today (as we speak, her dad took her) to make sure nothing's going on neurologically. She has loads of bloodwork that we need to do and stool samples and urine tests, and I have to schedule an upper GI. Once all those are complete, whenever that is, we'll have a more clear picture of what's causing it. She's such a trooper though, even when she's sick.

Jackson's becoming quite the little person. He's smiling and laughing and trying really hard to walk. He also says "mama" and "dada". More "dada" than anything else at this point. He's feeding himself little cookies that I break off into small pieces. Crazy how fast they grow up.

As far as our move to Dallas, we should know something by this time next week. Dietrich's final interview / presentation is on Monday. The other person that's up for the job has theirs on Tuesday, so they want to make a decision by Wednesday. Either way, we know that whatever is meant to happen ... will.

TGIF?

2008-04-17T19:16:00.002-04:00

I hope Friday is better than Monday, Tuesday, Wednesday and Thursday were this week. Holden is out of sorts. He's screaming and crying at ABA. He's having MAJOR issues with transitions there. Changing therapists or even rooms, he's having meltdowns. He's stimming like crazy. Today, it was walking past the TV (looking at the different angles) down the wall of the playroom, and back. Over and over and over again. Drives me insane. Still mouthing everything. Chewing the binkies that he has left. Chewing on his shirt all the time.

God, please let this be a phase that will go away soon. The last things I've started are the Minerals and Taurine. Going to talk to Dr. Berger about that and see if either could make such a difference?!

On a "lighter" note (not really, but still), we got the DMPS and EDTA challenge results back. DMPS wasn't impressive - did pull some metals. Lead being the highest, but not elevated. Did pull some mercury, but again, not a lot. The EDTA challenge test pulled both lead and mercury in the orange. From what I've heard, EDTA is notorious for pulling lead ... but not mercury. So, that's good news. I have one more challenge (DMSA) and will do that this Saturday. Our next DAN appointment is May 1st and we'll go over all the challenge tests and decide which chelation agent to use.

So, anyway, please let me be thinking TGIF tomorrow morning!

great weekend, but now - wtf?

2008-04-14T14:13:00.003-04:00

We had a great weekend. My mom came over to stay with us. Saturday, we took the kids to a new place in town called Bounce. It's really just a place for kids with sensory issues. The kids loved it. Then, we went to the circus. Kids loved that, too. Sunday, we went to IKEA. Kids didn't love that as much as the adults did. Holden was very cuddly and loving and even reminded me of a "typical" kid most of the weekend. He even wanted attention from my mom while she was here - and normally he could take it or leave it. He really did great, all around. Much better than he has been in recent weeks.

Last night though, it was hard to get him settled down. Once he went to sleep, we took him up to bed and he was okay until around 11pm. Then it was up and down and up and down. He was just really whiney. He had a wet diaper (and bed, and clothes) at around 5am so I had to get him up. He had a meltdown (I would, too, if someone took all my clothes off and woke me up), so Dietrich took him into his room and laid him on the bed. He watched TV until I went up to get him at 7am. He had ABA this morning and he just had a really hard time. His vocals were off, his crying was pretty much non-stop. He just had a tough time this morning.

I'm thinking it's the lack of sleep. He normally sleeps anywhere from 10-13 hours a night, and last night, he got maybe 6-7 hours. I'll watch him and if his behavior doesn't improve in 2 days or so, I'll call Dr. Berger to see what he can suggest. God I hope it gets better soon!

THREE

2008-04-10T14:00:00.002-04:00

no. really?????

2008-04-02T06:36:00.001-04:00

Could it be true?? Let's hope so!

AMERICAN ACADEMY OF PEDIATRICS RECOGNIZES WORLD AUTISM DAY

For release: APRIL 1, 2008

AAP media contacts: Susan Stevens Martin Debbie Linchesky
847-434-7131 847-434-7084
ssmartin@aap.org dlinchesky@aap.org

CHICAGO – The American Academy of Pediatrics (AAP) supports World Autism Day (April 2) as a way to bring together groups that are committed to finding the causes of, and successful treatments for Autism Spectrum Disorders, which now affect an estimated 1 in 150 children in the United States. Thousands of children, parents and families are coping with what can be a devastating diagnosis with lifelong consequences.

Pediatricians care for children with autism and their families every day. They are passionate advocates on behalf of these families and recognize that autism is a significant challenge to the health of the nation’s children. Pediatricians emphasize that early diagnosis is critical. The AAP promotes regular screening for autism at the appropriate well-child visits, as well as treatments tailored to meet the needs of an individual child. In 2007, the AAP published the Autism Toolkit, which includes clinical guidance to help pediatricians identify and manage children with autism, to refer them to therapeutic services, and to provide parents with information and resources. The AAP also offers a host of resources for parents on its Web site, www.aap.org.

“We know many parents are searching for answers,” said AAP President Renee R. Jenkins, MD, FAAP. “The AAP has supported research into the causes of autism and will continue to do so.” Pediatrics, the Academy’s peer-reviewed, scientific journal, has included dozens of studies on the associated factors, management and impact of Autism Spectrum Disorders.

The AAP recognizes the best way to address the needs of children with autism and children overall is through a partnership among pediatricians, parents and researchers. The AAP has met with leaders of advocacy groups, such as Autism Speaks and the Autism Society of America, which include parents of children with autism. Most recently, the AAP met with representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism. All advocates for these children agree that further research is needed regarding causes as well as safe and effective treatment.

“We are pleased the AAP reached out recently to Defeat Autism Now! in order to better understand the treatments and interventions that we have found beneficial to children with autism,” said Stan Kurtz, executive council member of Defeat Autism Now! “We are full of hope that this is the beginning of a thoughtful partnership that will further explore factors that might cause or contribute to autism, as well as examine safe and effective treatment approaches for families coping with this condition.”

“Autism is a challenge for pediatricians, their patients and families. By working together, we stand the best chance of helping these children to realize their full potential,” Dr. Jenkins said. “The Academy is committed to working with researchers and treatment groups like Defeat Autism Now! to get closer to finding answers to the multiple causes of autism and determining effective therapies.”

For more information about autism, visit www.aap.org.

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.

The Autism Research Institute (ARI) is a non-profit organization established in 1967 that fosters scientific research on autism triggers as well as diagnostic, treatment, and prevention methods. Through its Defeat Autism Now! program, ARI provides research-based information to parents, clinicians, and researchers worldwide, through its Web site (autism.com), call center, parent groups, conferences, science-based publications, and think tanks. (Press Contact: Autism Research Institute; email: lisa@autism.com)

true joy

2008-03-31T20:42:00.002-04:00

Today Holden was at the clinic for ABA. I usually drop him off and run errands and come back 2 hours later to pick him up. Sometimes I stay in the waiting room, sometimes I go back and watch so that I can learn. Today, I went in to pick him up about 15 minutes early and sat in the waiting room. He came out the door in the little flintstone car he likes so much and I didn't say anything. I wanted to see if he would notice me. He did more than notice me. He turned and saw me...smiled with those dimples of his, got out of the car, said "mama!!" and came over to give me a hug. I can't even begin to describe the way it felt. You wait so long, and then one day it happens. You finally know that he realizes you are mama. And he loves me. I could see it on his face and how excited he was to see me. I'll never stop fighting to bring him back to us.

good day!

2008-03-31T16:29:00.003-04:00

The new yeast medicine (Sporanox) must be working. Holden's having a great day today. A far cry from the past 2 weeks. Not even ONE tear or tantrum this morning at Quest. No problems transitioning from outside to the therapy room. His therapist said he did great. Notes from therapy this morning:

-1st hour - was able to fade prompts and had numerous independent vocals for movie (mmm-ooo-eee). he wasn't always singing and saying but got vocal without help! was also able to fade prompts to a light touch on hand to get the sign for raisin. got 1 independent "bray bray" (what he calls raisin) vocal. worked on echoics (tata, ahhh, oooo). when holden was playing with balloons, did get correct for all 3. also got an approximate "balloon" and ask for balloons - sounded like "bahloo"!!! also said "mo" for elmo.

-2nd hour - good hour. worked alot on down - was able to fade out prompts to a model of the sign and he got the vocal many times ("duh" for down).

yay!!!!!

holden

2008-03-30T07:34:00.002-04:00

I spoke to Dr. David last Thursday evening. We're switching Holden from Diflucan to Sporanox. I think the yeast is giving him a tough time. He's still extremely stimmy, unfocused, and hyper. His hand is down his diaper constantly. Dr. David said to expect a tough weekend, due to dieoff, if the new anti-fungal works. Boy he wasn't kidding. Holden was up last night until 10:30, when he finally fell over and went to sleep. He was a little maniac, extremely hyper. I even tried activated charcoal and he was STILL all over the place. A little less hyperactivity, but still going nonetheless. We'll see what today holds in store for us.

I've also ordered some digestive enzymes from Kirkman. We should start those this week once the order arrives.

We still have 2 challenge tests to do - with DMSA and DMPS suppositories. I haven't been able to do them because I didn't want to make the yeast problems any worse for him. I was hoping it would settle down and we could do one this weekend, but we'll put it off a few more days to see how he does.

He starts daily ABA therapy this week. 2 hours a day, everyday. Quest Kids has been a godsend to us. We could never thank them enough for the grant they've given us.

zoe

2008-03-30T07:32:00.002-04:00

Her EEG came back normal. She hasn't had another 'episode' since the last one almost 2 weeks ago. Maybe it was a fluke?? I hope so. She's on Spring Break this week, so she gets a well needed and deserved break!

a lot going on

2008-03-23T07:27:00.002-04:00

Since my last post, Holden has had his 2nd IV DMPS session. He seems to be tolerating it well, I think. Some things we've noticed that he also did after the 1st IV - his appetite seems to decrease for a few days (which is not normal for him), he's a bit spacey, and he's very stimmy. Once all of this cleared up last time, he made some good progress and started doing things we'd never seen him do before. Good things. So, we'll see how the next few days go.

I know I don't write about much, other than Holden and his treatments. But, lately, we've been concerned about Zoe. She's had 3 episodes in the last 5 weeks or so. She'll wake up at around 4am and throw up. Then, she will continue to throw up every 10 minutes or so until around 5, 5:30am. No other symptoms. No fever. She feels fine the next day, and just before the "episode". It's strange. I've taken her to the doctor, who has ordered an EEG. We take her to the children's hospital tomorrow for the test. It's to rule out seizures. I pray she doesn't have seizures, and I pray that this goes away. She's such a trooper, that kid. I know when I was younger (and even now), I would get upset when I got sick. Lots of drama! But, with her, she just gets up and takes care of it on her own. Sometimes she doesn't even tell me she's sick. She never complains about it. She's awesome. Anyway, hoping we get to the bottom of what's going on with her soon. Poor chicken.

speaking of roller coasters

2008-03-10T19:03:00.002-04:00

You know how I said autism is a roller coaster ride? Well, here we go again. I posted that last night on here. This morning, we went to ABA. I sat in on the program today because I wanted to see how he was doing. His therapist told me that they were going to be changing his programs/goals, because he's mastered most of what they started with just a few months ago. And he's moving so fast with the echoics, they need to create a new program. Now THAT'S the kind of roller coaster ride I like!!!!!

regression

2008-03-09T20:06:00.002-04:00

I hesitate to title this post "regression". Holden's doing great still, esp. with the verbal imitation. He will pretty much at least TRY to say whatever you tell him to. It's clear that it's just not easy for him to get the words out - he will make a sound, and it's also clear that he thinks he's saying what you told him to say.

The reason I titled it regression is because the yeast has returned and he's very spacey, stimmy, and just ... out of it. I haven't seen him this way for a few months, so it's really hard to see. He's been on a 'high' for a few months now, and to watch him slip back into his own world - even though it's much better than before - is just hard. He's been back on the Diflucan for 4 days now. I'm suspecting that he's going through a die-off with the yeast, which usually occurs when you're trying to clear it out.

At the advice of the DAN doctor, we've held off on the 3 challenge tests we're waiting to do. We have everything we need to do them - but yeast can get worse during chelation, so we're giving the Diflucan time to work. It's hard to wait. You know your kid has crazy levels of toxins in his system and you know that you need to get it out, but you have to wait. I'm hoping to do one of the challenge tests on Tuesday. But we'll see how he is tomorrow first.

I told my husband that I feel guilty for complaining or even bringing up the fact that it bothers me to see Holden this way. Because, even at his worst now, he's better than his best about 7 months ago. So, yes, he's making progress. And I'm so thankful for that. But, as we all know, autism is a roller coaster ride and it's hard to go from a 'high' to a 'low' in a matter of days.

So, Happy Anniversary to us today! 3 years of marrige, 6 years of being together. This past year of our marriage has truly been a test for us. We're still here. Still married. And still very much in love. Thank god. I don't know what I would do without my husband and having to go through all of what life has thrown us by myself.

Zoe's taking the FCAT this week. The standardized test for 3rd grade. They've been preparing (or rather, scaring) the kids for a year now. She's nervous, but I know she'll do fine. She's so incredibly smart and intelligent and loving, and I could go on and on and on.

Jackson's 7 months. He's doing fine, developmentally. Holden also did fine at 7 months. But, every month that he's on track is a blessing. We'll continue to watch him and probably have a formal eval at 12 months. That way, if there's anything at all worth looking into, we can start even earlier than we did with Holden. Here's hoping we won't need to.

video worth watching

2008-03-03T16:00:00.000-05:00

http://www.youtube.com/watch?v=AsHOR-PNdjk

real imitation - verbal

2008-02-26T21:54:00.002-05:00

You know, looking back about a month or 2 ago, I think I was just really hopeful. Holden would occassionally imitate a sound, or would just come out with more sounds on his own. I thought to myself ... "he's improving, he's really improving!". But, today it just a whole other level. This morning in ABA, they told me he was more verbal than he's ever been. They were able to get a number of echoics from him. Not just 1 or 2, but like 4 or 5, which is huge. So, then he had speech and she hasn't seen him in over a week. She commented on how she couldn't believe the difference in just a week.

And it's true. It's crazy. Now, I can with-hold things like his drink (cup), his binkie (bee-bee), and anything else I want and ask him to say something and he does! For the most part anyway. For example:

me: "say mama"
Holden: "maaa-maaa"

me: "holden, say ba-ba"
Holden: "ba-ba"

me: "holden, say eeeeeat"
Holden: "eeeat!"

He's also doing a lot more gross motor imitation. Things he hasn't been shown before. When I ask him to show me his ear (they've been working on head and nose), it takes him a minute, but then he points to his ear.

I don't know what it is. As usual, it could be a combo of things. I honestly think that the chelation IV we did in January got the ball rolling. Then, I stated TMG about 2 weeks ago and I'm just now up to the therapeautic dose. I think that has got to be what's kickstarted his speech as much as it has.

To see improvements like this ... real progress. I can't tell you how good it feels. I'm crossing my fingers and toes and hairs that it will just continue.

"Cup"

2008-02-20T12:40:00.002-05:00

Holden was sitting on my lap last night before bedtime. I had his sippy cup in my hand:

Holden: "cup"
Me: "Yes!!! CUP!!" I handed it to him.
Holden: "cup"

This morning while waiting for his therapist, he went to grab his sippy cup out of his bag and I stopped him. I looked at him with it in my hand and said "cup". He looked at me in the eye and said "cup", with a huge grin on his face. Of course, I gave him the cup!

So far, with the Baby Bumblebee video, he says:
"cup" (obviously)
"cow"
"car"
"ball"
"baaa" for bottle

starting TMG

2008-02-14T09:18:00.002-05:00

I heard about DMG and TMG from a friend of mine. She said she's talked to a lot of other parents and kids have seen great improvements by starting one of these. TMG is DMG with an extra methyl group added. Or, that's how I understand it anyway. Some kids have seen good progress with speech and since speech is going very slow with Holden, I decided to ask Dr. David if we could try it. He emailed me back with the doseage info and we started 2 days ago. Apparently the therapuetic dose is around 1000-2000mgs per day. I bought the 175mgs. capsules to start him because we like to start things slow. I'm starting with 1/2 cap twice a day for 3 days. Then increasing by 1 capsule every 3 days, until we reach about 1000mgs. per day.

As with everything and autism, it's a crap shoot. What works for some kids doesn't work for others. What doesn't work for other kids works for yours. If I don't see any improvement at all on the TMG, I'll stop it. So far, he's up to taking:

-Vitamin C
-Calcium
-L-Carnosine
-NuThera Multivitamin
-Folinic Acid
-MB12 shots
-Nystatin
-Cod Liver Oil
-Licorice Root
-TMG
-Factor 4 probiotics
-Epsom salt baths every night
-Glutathione cream

And, almost all of those have to be given twice a day. So, the poor kid has nothing to eat or drink without having some sort of supplement in it. He's good though - doesn't bat an eye. He proably would if I didn't put anything in his juice! He's think it doesn't taste "right" by now. Ha.

As far as progress, he's doing well. He's babbling more. Trying so hard to talk. He has developed a sensitivity to loud sounds. He never had this before, so I don't know if it's a problem, or if it's a good thing in that he's becoming more aware of his surroundings, instead of being in his own little world. I can't run the blender or vaccum without a freak out/crying session. He calms down immediately when it's over though. And he doesn't cover his ears, he just cries. Like he's scared. He's even a little "iffy" when the microwave's on. I'm going to discuss with Dr. David next week when we meet with him to discuss chelation. Our appointment is on the 20th.

IV chelation challege results

2008-02-05T10:51:00.001-05:00

We got Holden's results back yesterday from the IV chelation challenge we did a few weeks ago. The pretest (which is urine collected randomly) showed low levels of lead, and no mercury at all. There were other things, but lead and mercury are the ones I looked at. The post test (which is the urine collected for 8 hours after the IV chelation) showed lead levels "high", and showed mercury. The mercury wasn't "high", but it was there, and it was on the higher end of "within normal limits".

So, I'm not doctor, but I'm assuming this means on his own, he's not excreting toxins on his own - or at least not as much as he should or could. Whereas, the chelator has helped him excrete high levels of lead and also some mercury. Our appointment with Dr. David isn't until the 20th and we'll discuss ongoing chelation at that time. I'm hoping to start him on suppositories soon, and do 1 IV per month. Hopefully this will pan out and we'll start to see continued improvement.

I don't know if it's just me, or if it's reality, but since this 1 IV we did, I've seen improvements. Who knows, maybe it's just everything kicking in and has nothing to do with his body getting rid of some of the metals. Or maybe it does have something to do with it. In this game, you never know. It's always a guess. Whatever it is, I'll take it.

meow

2008-02-05T10:49:00.000-05:00

In our continued effort to get Holden to imitate, something posessed me to make the "kitty-cat" sound the other day in the car. Boy did that get his attention. So, now, about 20 times a day, it goes something like this: "Holden, what does the kitty-cat say?". Pause. I say "meeeeeyoow". He looks at me, opens my mouth, watches me say it again, and then says "owwwwwww". There you have it, imitation.

We're also working on ducks (quack, quack, quack), and cows (moooooo). We'll see how long that takes.

interesting

2008-01-29T13:31:00.000-05:00

http://www.cnn.com/2008/SHOWBIZ/TV/01/29/pediatricians.tvshow.ap/index.html.

repeating

2008-01-29T09:05:00.000-05:00

Not everything, mind you. Not even close to everything. BUT, he IS repeating some things on TV. Mostly on the Baby Einstein DVDs, which I thought were really some type of devil-spawned DVD collection because they became such an obsession with him early on. But, if they're going to help him get some words out, then so be it. So far today, I've heard "kitchen", "chair", and "ball". And, while watching Baby DaVinci, he imitated sounds that the puppets were making. They were yawning, and he does it right after them. Everytime. So it's NOT a fluke.

As painful for me as that IV was 12 days ago - I'm ready for another!

what's going on???

2008-01-26T07:00:00.000-05:00

I have no idea, but I'm not changing anything. I don't know if it was the IV chelation from last Thursday, or if things are just starting to "click" for Holden. He had a great week, doing things I haven't seen him do before. His ABA therapists all said he's making a lot more sounds. Not noises, but actual sounds. 3 days in a row, I caught him imitating things from TV. He was watching Barney once (I know, I know) and I caught him out of the corner of my eye doing something with his feet. I thought "oh, its just one of his dances he's doing". Then I looked at the TV and saw the kids dancing, doing exactly what Holden was doing. They started swinging their arms around and he watched and did the same thing...again. Just yesterday, he was watching a Baby Einstein video and there was a windup toy on there that would jump...walk, then jump again. Holden stood in front of the TV and jumpped every time the toy did. And smiled. I also heard some verbal imitation while he was watching a video, too.

Gross motor imitation is what we've been focusing on in ABA for him. It seems to facilitate verbal imitation. He's done GMI on occassion, but most of the time, its been prompted. This week, the times I caught him doing it, it was NOT prompted at all. Completely independent. I wish I would've had a video camera when he was doing it ... but I hadn't expected it, so I wasn't prepared.

Was it a fluke? Maybe. But I don't think so. Was it due to the little bit of detox that the one IV chelation would have accomplished? Possibly. Or, is it because he's started ABA thearpy 4 days a week this past week? Could be. Whatever the reason, I'm not stopping any of it.

challenge (provocation) test

2008-01-17T17:13:00.000-05:00

Holden had his 1st challenge test today at the DAN doc. He was given 450mg of Glutathione and then he had 50mg of IV DMPS. It sucked. I had to hold him down. Normally, I'd make Dietrich do the holding down, but he is out of town for work. So, I had to do the dirty work. She had a hard time getting the vein in his arm, but FINALLY did enough to get the blood draw we needed. We're also checking his hormone and cortisol levels. And checking to see if the TD Glutathione is helping him, so we're checking those levels, too. Then the vein blew, so she couldn't administer the meds through that one. Had to remove the needle and then poke him in his hand. He screamed and cried and cried and I cried. He looked at me, crying, and yelled "MAMA!!!!" I thought my heart would break.

For 8 hours, we're collecting urine. I'll send it to the lab on Monday and we'll see what comes out.

So far, he's okay. Tired, but okay. We're all beat after today.

the "window"

2008-01-14T11:18:00.000-05:00

Jenny McCarthy talks about The Window in her book about her son's autism. I've heard a lot of interviews, too, where she talks about The Window. How we have to pull our kids through this window.

I'm hesitant to type this, or think this, or admit this - for fear that it will go away. But, for the 1st time since Holden's diagnosis, I feel like The Window is at the very least ... opening. We have a long, long way to go in Holden's recovery process, but it feels like we're truly finally making some progress. And, progress that is notable. Not just us asking if it's a coincidence, or asking ourselves "did we really just see that?" and answering with a "nah, probably not".

Saturday, we were going somewhere - to run errands. Holden's been saying "bye bye" pretty consistently for the past few weeks. So, we told him we were going bye bye. I told him to go get his shoes so we could go. I kept talking to Dietrich and then realized as Holden walked around the corner and back into the room - that he had his shoes in his hands. Not only did he go get them. But he brought them to me to help him put them on. For most people, that's really nothing. Most parents can say to their kids "go get your shoes!" and they will go get their shoes. I've always wondered if Holden understands what I'm saying, yet he's unable to respond. Now I KNOW he understands most of what I say, because he IS responding. For a child with autism, that's huge.

So, yes, even if it's just a crack, The Window is FINALLY opening.

Paper!!

2008-01-09T20:51:00.000-05:00

Holden loves paper. It's his "toy" of choice. He likes to shred paper, specifically. And hold it in his hand. Not just any paper, but paper towels or tissue. Regular paper you draw on just won't work. On New Years Eve, we spent the afternoon and night at a friend's house. Holden was really good. He crawled up in the chair with a few people and just hung out. He also played with his paper and when we were in the kitchen, we all heard him say "paper". Not just once, but 3 times. And it wasn't just me, but everyone else heard it too.

So, no more flukes. He's talking. It's not consistent, but he's talking. In the past week or so, we've heard "paper" (more, and again and again), "bath", "bubba" (for Jackson), "sissy" (for Zoe), "wawa" (for water). And it's great. He's not consistent, like I said, but we're hearing more sounds at least. And actual words. I really think his receptive language is improving the most lately though. While at our friends house on New Years Eve, he had a long sleeved shirt on and was sweating a little (damn Florida weather). I said to him "honey, do you want me to change your shirt and put on something cooler?" Not expecting him to actually SAY anything or DO anything. But he walked over to his bag, pulled out his other shirt, and laid it on top of the bag. And there's no way it could have been a coinidence. He's also listening to me more when I tell him to "come here". Or telling him to "get down". He's taken to crawling up on the trunk in the living room next to the TV. So, I think his receptive language is really really improving right now, which is awesome.

In other news: Zoe started her new school 3 days ago. She now has a total of 2 "really good friends", she says. I love that kid, she's so great. I was worried about her the 1st 2 days, but today she did so good and I know that we're over the worst of it. Thank God!

Tomorrow is such a full day that it's 9pm and I'm going to bed. We have ABA at the clinic from 9-11am, OT at the clinic from 1-1:30, walk to pick up Zoe at 2:30, and back for in-home ABA from 3:30-5:30. I'm tired just typing it out. Good night internet!

christmas

2007-12-27T11:09:00.001-05:00

I haven't posted much over the past couple of weeks. The holidays have been crazy.

Zoe's out of school on break. We registered her at her new school last week. She'll start January 7th. She's not excited. I keep reminding her that it's only temporary - until we move to Dallas in June. Then she'll have to start another new school. Hopefully she'll be there for a while.

Jackson's growing like a weed. Had his 4 month checkup a week or so ago. I think he's about 14 lbs. now. Everything seems to be doing well with him. He's meeting the developmental milestones he's supposed to meet. So, we just keep watching him. Probably too much.

Holden's doing well. I think the clinic based therapy is helping him a lot more than I thought it would. He's responding well to the therapists and he's learning a lot. Biomedically, I'm pretty sure we have the MB12 shots to thank for his recent improvements. I've seen more with those, than with anything else he's started. If I don't write these down here, I'll forget. So:

12/22/07 - We had a family friend over. She's a Behavior Analyst. Holden was making great eye contact with her. He eventually came to get all of us, led us to the couch, sat us down, and then ran off laughing and smiling at all of us. If we moved, he would continue to do the same thing. And look at us for smiles and laughs. He initiated a "game", and as my friend said ... not only was it a "game", but a SOCIAL game where he didn't need a tangible reinforcer. Just us laughing and smiling with him seemed to be enough incentive to continue. He's never done this kind of thing before, so it was so so great to see.

12/25/07 - Christmas morning was good. He opened a few presents himself, and even was interested in some of the toys. Of course, after a while, he found the paper and would shread it, drop it, lather rinse repeat. But, all in all, he did great. We went to Disney (Magic Kingdom) on Christmas day. We rode: Aladin's Magic Carpet, Pirrates of the Carribean, The Haunted Mansion, Jungle Cruise, Peter Pan, and It's a Small World. He LOVED them all. Laughed the whole time and was really really focused. I didn't know how he would react - but it was so worth every penny it costs to get us there. He had such a good time. So did Zoe - riding Space Mountain for the 1st time (TWICE)! I'm so glad we went.

12/28/07 - ABA at the clinic. His therapist said he did great. Actually got a few verbal imitations out of him. This is big because we haven't been able to get him to this step yet, although it's been a goal for some time. She also told us that we've been chosen to receive part of a grant for hours at the clinic. Hopefully, will be 4 more per week, making his total there to 8 per week until Part C runs out on his birthday (April 10th). This would be so good for him, so my fingers and toes are crossed that we'll hear more about that soon.

As down and depressed as I had been feeling just before the holidays, I feel a little better now that it's all over. Holden did great. He enjoyed the lights, tree, presents, Disney, and Zoe also had the best time. Seeing your kids enjoy the holidays is just the best thing ever. I also started taking Prozac about a week and a half ago. I'm not really sure if it's making a difference. I'd like to think so, but I don't know if it's just the "high" from the holidays and seeing Holden have such a good time. Time will tell, I suppose.

Happy Holidays, everyone!

damn

2007-12-13T06:07:00.000-05:00

When we moved to this house (renting) from the last house (also, renting), we moved into a different county. Still, only about a mile from the last place though. We decided to keep Zoe in the school she was in, for a few reasons. She was going through a lot at the time with dealing with Holden's diagnosis and how it changed our family. She already had anxiety about the FCAT which is a standardized test that all 3rd graders MUST pass. Yeah, I know, no pressure on an 8 year old, right? Seeing as they start telling kids about this test in the 1st grade - doesn't help to scare the ba-jesus out of them. And, we are planning on moving after the school year to Texas, so I didn't want to put her in a new school for a year, and then have to put her in another new school for next year. So, yeah, she's been going to the same school and doing great. Honor roll! She brought home a letter from the school 2 days ago, telling us that we had to provide proof of residency in the county for her to continue there. Obviously, I don't have that, so she has to go to a new school. I hate it. She's being such a trooper about it, but I know it bothers her. And it bothers us and we now realize that we should've just done the right thing to begin with - either found another house to rent in our old neighborhood, or enrolled her in the right school before the year began. But, we didn't. Live and learn, right? I'm just so sorry for her. She loves her teacher, is doing so well, and doesn't want to leave her friends. I know she'll be fine, but still. Breaks my heart.

I don't say enough about her on this blog. She's such a wonderful kid, really. I love her to pieces. And the boys couldn't ask for a better big sis!

mouthing

2007-12-07T12:28:00.000-05:00

Holden was mouthing EVERYTHING yesterday. I sat with him for 30 minutes on the couch, just trying to keep his fingers out of his mouth. Pencils, toys, his shirt, paper, whatever he could find - was in his mouth. He had OT yesterday, thankfully, and they kept him for about 15 minutes longer than his normal 30 minute session. She gave him a vibrating teething toy and he used that most of the session and was still able to focus on what she wanted him to do.

Speaking of which. She had counting bears and the corresponding bowls. There are 4 colors - blue, red, yellow and green. She put red and green bears on the desk - with the red and green bowls. Using hand over hand, she showed him where the red bears went...in the red bowl. Then he picked out all of the red ones and put them in the right bowl. Then she did the same with blue and yellow. He picked out all of the blue and put them in the blue bowl. I thought maybe it was a coincidence, but she said it wasn't. He moved the other one's out of the way just to get to the color he was working on. Now, if he could just talk and tell us things!

Today he had ABA at the clinic for 2 hours. He's doing well there and I've decided to only sit in for the first 1/2 hour or so of the session. The remainder of the time, I sit in the waiting room. He does okay without me in there. His therapist said he was saying "mama" when I wasn't there. When it was time for him to come out, I went to the door and looked through the glass. He saw me and started running and smiling. Now that we're home he's very stimmy, but I think that's just because of the intense therapy he had this morning. He'll "even" off in a little while, I think.

ZOE!

2007-11-29T09:28:00.001-05:00

My little girl made honor roll!!! 3 A's and 2 B's on her report card yesterday. I'm so, so, so, SO proud of her. She's really worked hard for it, and with everything going on in her life right now, she's really kicking ass. God I love her.

shock

2007-11-29T09:25:00.000-05:00

Last weekend Dietrich was clipping Jackson's nails. I was on the couch, and Holden was on the floor ... stimming on a book. Jackson cried, because, well, he didn't like being held tightly. I noticed that Holden would look at him. He would look everytime Jackson whined or cried. Then, Dietrich clipped Jackson's finger a little and he let out a WAIL. Holden got up, walked over and touched his foot. Looked at him. And then walked away. Jackson kept crying and Holden went back to him. He touched his arm and looked at him, and then leaned in and gave him a kiss. I was in TOTAL SHOCK. Because, see, this means that he understands that Jackson was in pain. He "gets it". He knows that he was upset and he was trying to make him feel better. He had empathy for his brother. I cried.

"ball"

2007-11-26T21:58:00.000-05:00

"ball". It's the most consistent word I've heard from Holden ... since, well, he was 15 months or so. Everytime he sees something round, he says "ball!". Putting up the Christmas tree yesterday, ball ornaments - he would reach for them and say "ball!". Walking through the craft store on Saturday, we walked by styrofoam balls and he said "ball!".

I didn't think I could ever be excited to hear my kid say ball. But, I'm SO fricken excited to hear him say ball!!

ABA

2007-11-26T21:54:00.000-05:00

FINALLY. We have an awesome ABA therapist. Last Wednesday thru Saturday, Holden had 6 hours of ABA with the Director of the clinic he's going to. It was great. He responded SO well to her. And she's very comfortable with him, and it's just so good to see him responding to other people the way he does with her. We worked on "stop" and "go". Took walks, and within about an hour, he was able to sign "go" unprompted. We rolled a ball to Zoe. And just let him play outside. He loved it.

We've been at this therapy thing for 8 months and FINALLY have a good team of people working with him. I'm hopeful.

a better day...

2007-11-19T22:04:00.000-05:00

Today was a better day. Things are looking up and I hope I'm coming out of this funk I've been in for a week or so. Sometimes I just need to feel the way I want to feel for a few days and then I can get back to the task at hand, which is to help Holden, be a mom to all of my kids, and a wife to my husband. I feel better.

Tomorrow looks a little like this: 9-11am: ABA for the 1st time at Quest Kids, 11:30-12noon: Speech at home, 1-1:30pm: OT at the clinic. Busy, busy morning. We FINALLY are starting the ABA through Early Steps, thank goodness. It's taken long enough, seeing as he's been approved since October 19th.

We went to a friend's house today to help celebrate another one of my friends' birthday. The friend's house we went to - she's an OT, and also has a son who WAS on the spectrum a few years ago. He's since tested "typical". Anyway, this was the 1st time she's met Holden. I was a bit nervous. Thinking he would just rub his hands on the walls, or find something to stim on, being in an unfamiliar environment. But, guess what? He didn't. He was SO good. He watched TV, walked around, played with their toys. He stimmed for about 20 minutes out of the entire 3 hours we were there. And even then, he was able to be interrupted without a tantrum. Nice. My friend said to me: If I didn't know he was autistic, just seeing him, I would have never guessed. I can't tell you how good that made me feel...

Last evening, the boys next door were playing outside. Zoe was outside too. I took Holden out, and the boys were kicking soccer balls and laughing. Holden was stimming a bit - walking back and forth, back and forth - the same path from our yard to theirs. Then, he saw the boys playing ball, and got a huge smile on his face, ran over, and laughed while he ran through them. It was obvious to me that he WANTED to play, he just didn't know how. I loved the fact that he even noticed.

And, I have to talk about Zoe for a second. She had such fun today with my friend's daughter - who's the same age as her. They love each other. They put on a fashion show for us and it was SO wonderful. I love that kid, I really really really do.