11.06.2009

Wishes

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".

10.05.2009

seriously???

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 ......

9.16.2009

Doctor's Visit

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.

7.29.2009

Proof.

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!

7.22.2009

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

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

7.02.2009

real play! (cont.)

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!

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.

6.28.2009

summertime

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)





6.10.2009

fork

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!

6.04.2009

End of School Update

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

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!





6.02.2009

enhansa update

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.

5.21.2009

enhansa

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.

5.12.2009

DAN! Update

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!

5.10.2009

the normal ups and downs

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.

5.07.2009

downer

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.

????????

4.24.2009

daily data sheet from school today

"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

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.

4.22.2009

4.16.2009

YES!!

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!!!

4.14.2009

playing

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:
video

4.10.2009

Four

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!











4.08.2009

huh.

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.

4.07.2009

waiting for the other shoe to drop

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

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.

4.02.2009

World Autism Awareness Day (WAAD)

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.

3.30.2009

spontaneous language!

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

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.

3.26.2009

one of those days. the ones i hate having.

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.

3.25.2009

missing the 6:30pm bedtimes

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?

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...

3.17.2009

(appropriate) spontaneous language

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.

3.15.2009

Blinders Won't Reduce Autism - By Jon Poling

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.

3.10.2009

update on language, etc...

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

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.

2.25.2009

Government Again Concedes Vaccines Cause Autism

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)

2.21.2009

I Love You

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

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

2.12.2009

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

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.

2.11.2009

hopes, dreams & wishes

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.

2.03.2009

holden's "report card" / iep update

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.

1.20.2009

a little less suck-age

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!

1.12.2009

today sucks

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.

1.07.2009

New Year

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.