tag:blogger.com,1999:blog-208868632024-03-13T20:53:54.365-04:00My World of Autism and MoreThis blog started off as a place for me to post my thoughts, about life, my family, myself. It has slowly morphed into a blog mostly about autism. Our son was diagnosed in April 2007 with PDD. Since that time, I've learned more about autism then I ever thought was possible. Now we aren't just a family, but we're a famiy living with autism.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.comBlogger174125tag:blogger.com,1999:blog-20886863.post-17019302400997176742011-03-17T10:40:00.004-04:002011-04-01T10:23:07.201-04:00Dear Mr. PresidentDear Mr. President,<br /><br />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: <br /><br />US Facts: <br />1. A new case of Autism is diagnosed every <em><strong>20 minutes.</strong></em><br />2. There are 24,000 new cases every year.<br />3. The economic impact of autism is <em><strong>more than $90 billion </strong></em>and is expected to more than double in the next decade. <br />4. Autism receives <em><strong>less than 5%</strong></em> of the research funding of many less prevalent childhood diseases.<br />5. <em><strong>There is no medical detection or cure for autism</strong></em>.<br /><br />Staggering, aren't they?<br /><br />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. <br /><br />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. <br /><br />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. <br /> <br />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?<br /><br />Thank you.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-88409350935790314732011-03-07T09:43:00.002-05:002011-03-07T09:52:19.311-05:00F you.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.<br /><br />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. <br /><br />F you, Monday. F you, this week, actually. And F you, Autism.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com1tag:blogger.com,1999:blog-20886863.post-9498075452954449462011-01-13T13:44:00.002-05:002011-01-13T13:46:47.917-05:00Dr. Andrew Wakefield responds....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.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-82129117889754380532011-01-06T09:14:00.004-05:002011-01-06T09:44:59.702-05:00Medical journal: Study linking autism, vaccines is 'elaborate fraud'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. <br /><br />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. <br /><br />For example: Hannah Poling (http://www.cbsnews.com/8301-31727_162-20015982-10391695.html). <em><strong>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."</strong></em><br /><br />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.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-2500447046153852312010-12-19T08:32:00.003-05:002010-12-19T08:54:47.216-05:00ThoughtsI 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". <br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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".-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-18719765322229219882009-11-06T15:05:00.004-05:002009-11-08T11:42:04.371-05:00WishesIt'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.<br /><br />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. <br /><br />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.<br /><br />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".-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com1tag:blogger.com,1999:blog-20886863.post-16232645772156547182009-10-05T11:40:00.004-04:002009-10-05T11:46:01.033-04:00seriously???Click on the title (seriously???) for the link to the CNN video:<br /><br />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. <br /><br />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! <br /><br />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 ......-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-6072781365621123562009-09-16T11:17:00.002-04:002009-09-16T11:23:26.154-04:00Doctor's VisitYesterday 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. <br /><br />But,<br /><br />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.<br /><br />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.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com1tag:blogger.com,1999:blog-20886863.post-77259585653879757502009-07-29T07:56:00.004-04:002009-07-29T08:05:35.643-04:00Proof.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. <br /><br />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. <br /><br />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!-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-22364833291280688312009-07-23T07:24:00.001-04:002009-07-23T07:25:47.747-04:00Autism & Chelation - Dateline NBCClick on the title.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-84645425142492039682009-07-22T19:39:00.002-04:002009-07-22T20:06:00.816-04:00Well, 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. <br /><br />So, his treatment plan is written. Here's a snapshot:<br /><br /><em><strong>- Requests for various items and activities using verbs varied 2-3 word phrases.<br />- Follows 1 step instructions within functional contexts (ex: get your lunch, stand up, clean up, etc.) to increase receptive understanding of language<br />- Receptively identifies actions, both in pictures and real-time<br />- Matches non-identical objects or non-identical pictures in a messy array of 5-8<br />- 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?)<br />- 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)<br />- Receptively identifies various attributes of different items (ex: big/little, wet/dry, long/short, etc) using objects and pictures<br />- Answers basic safety-related social questions (wh-questions)<br />- Develop fine motor skills in preparation for handwriting through activities such as lacing, stringing beads, using tongs, etc.<br /><br />Social & Play Goals:<br />- Spontaneously attends to peers during play situations<br />- Initiates physical interaction with peers<br />- Engages in sustained social play with peers<br />- Spontaneously responds to the mands (requests) from peers<br />- Spontaneously mands to peers<br />- Line up upon request to leave an area without additional prompts<br />- Respond to group instructions in the presence of 2-3 children<br />- Sits with peers for at least 10 minutes while attending to materials and/or teacher</strong></em><br /><br />I'm optimistically hopeful.<br /><br />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. <br /><br />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". <br /><br />So, I'm hoping the next time I update - I'll have some kind of miracle to report.<br /><br />-R-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-23556697602433357172009-07-02T21:54:00.002-04:002009-07-02T21:57:32.707-04:00real 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.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-52360691869808953822009-07-02T21:34:00.002-04:002009-07-02T21:40:47.108-04:00real 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.<br /><br />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. <br /><br />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. <br /><br />It's like they're FINALLY becoming "partners in crime". <br /><br />I love it.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-33632449367639836272009-06-28T08:29:00.003-04:002009-06-28T08:46:29.020-04:00summertimeI haven't had much time to blog since school let out for the summer. 3 kids keep you very busy, to say the least.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />Well, looks like the little chickens are up for the day, so more later!<br /><br />Here's a few pictures of our summer "adventures" so far (in HOT AS HECK TEXAS)<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh9JcIU5RPwnEeCceN8R-9bc0EnUEes0wn0xWWbkDPebKRiA7SHO44UzWIgbH13rq_YvpMLknTI8aGLW_uBX0oYroUROH7qAi3EhKp9b-MGh1gSWhUSEV3Cl6cHbz3VyBUH5ig/s1600-h/IMG_4977.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh9JcIU5RPwnEeCceN8R-9bc0EnUEes0wn0xWWbkDPebKRiA7SHO44UzWIgbH13rq_YvpMLknTI8aGLW_uBX0oYroUROH7qAi3EhKp9b-MGh1gSWhUSEV3Cl6cHbz3VyBUH5ig/s320/IMG_4977.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5352358809840295762" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg14B1BSajjduYhQVyhl0Kr27ZICKBTtS_jIvMxljw9ayH5wpwuoK4ZN28aKad-bxNU2gvFN2mHYP6I7LoblEPD063oYNORr8Uncs6ijmwbpPFyyVSAmoio1Uw3S_7Sp2IemfZ2/s1600-h/IMG_4975.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 309px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg14B1BSajjduYhQVyhl0Kr27ZICKBTtS_jIvMxljw9ayH5wpwuoK4ZN28aKad-bxNU2gvFN2mHYP6I7LoblEPD063oYNORr8Uncs6ijmwbpPFyyVSAmoio1Uw3S_7Sp2IemfZ2/s320/IMG_4975.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5352358809087472162" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_u1_n-7aryenEQS6Ov_k0nwgN_Sm5kAQX079ARd5ix-w5Zr_8m9CCJApFxMt7uJ-q_IQdwrnZSb1SyODoweo_M-KttfHzhv24vVK0zZ875rdnLo80uT4dgghozI4AkIxbIUYq/s1600-h/IMG_4966.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 272px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_u1_n-7aryenEQS6Ov_k0nwgN_Sm5kAQX079ARd5ix-w5Zr_8m9CCJApFxMt7uJ-q_IQdwrnZSb1SyODoweo_M-KttfHzhv24vVK0zZ875rdnLo80uT4dgghozI4AkIxbIUYq/s320/IMG_4966.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5352358803690655474" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNmA_8Hfl9Z9Y5B44mSwFSbqZB5749lcPGIOEdGA2VA4l3-e-RLmeHtneRc3Fzrnzxzyu8-EjsvGYm_GmljIuooHpok8mYhojxEkoHBtXAw7BX7cv-9CBBemu_ekqIAkvcMhk8/s1600-h/IMG_4825.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNmA_8Hfl9Z9Y5B44mSwFSbqZB5749lcPGIOEdGA2VA4l3-e-RLmeHtneRc3Fzrnzxzyu8-EjsvGYm_GmljIuooHpok8mYhojxEkoHBtXAw7BX7cv-9CBBemu_ekqIAkvcMhk8/s320/IMG_4825.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5352358799183166290" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY71UDw2OMA3r4ljnQpL2m_rN8DNx4klHr7dh8dlDo6cON-7hS5eWtPTYG_ewYLcjbmX39QBuhrgIXb143Eo13XLcED-XrIbUIGgxCYYFTKD3_8nT-QGLbACPZ0lzkOkSyKbDS/s1600-h/IMG_4978.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 186px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY71UDw2OMA3r4ljnQpL2m_rN8DNx4klHr7dh8dlDo6cON-7hS5eWtPTYG_ewYLcjbmX39QBuhrgIXb143Eo13XLcED-XrIbUIGgxCYYFTKD3_8nT-QGLbACPZ0lzkOkSyKbDS/s320/IMG_4978.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5352358798760555506" /></a>-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-35229824017380984272009-06-10T11:58:00.002-04:002009-06-10T12:01:35.967-04:00forkOk, 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.<br /><br />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. <br /><br />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!-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-73354757837659088502009-06-04T14:48:00.001-04:002009-06-04T14:48:22.219-04:00End of School UpdateSo, little Miss Zoe got ALL A's for her final grades. ALL A's. Very proud of her!!! <br /> <br />Holden's update is as follows: (his is different than just grades, so I have to update all of his "objectives" individually)<br /> <br />GOAL: Holden will master the skills needed to effectively communicate.<br />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!<br /> <br />GOAL: Holden will improve fine and/or gross motor skills<br />Comments: Holden has mastered these objectives for this school year, we will target new objectives next school year. Great work, Holden! <br /> <br />GOAL: Holden will improve cognitive skills<br />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!<br /> <br />GOAL: Holden will improve personal-social skills<br />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!<br /> <br />GOAL: Holden will improve daily living skills<br />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!<br /> <br />GOAL: Holden will increase positive behaviors and/or decrease negative behaviors<br />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!-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-49233379122499691052009-06-04T10:42:00.002-04:002009-06-04T10:45:00.033-04:00Last day (almost) of schoolJust 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!<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYLctDbzpQ0y2JrhnW6ZnAzFzsLHSfXoKByLc7qcYYnU7XrVsMPCkd5TUZ4uILZ7bfIrjCyU0VdCNdkSGb9Xbaj9hDNAUTBlUu-3cMB9UkxO2kNK2HEy0XBpVcQOKuOjHjPsTe/s1600-h/IMG_4801.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 269px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYLctDbzpQ0y2JrhnW6ZnAzFzsLHSfXoKByLc7qcYYnU7XrVsMPCkd5TUZ4uILZ7bfIrjCyU0VdCNdkSGb9Xbaj9hDNAUTBlUu-3cMB9UkxO2kNK2HEy0XBpVcQOKuOjHjPsTe/s320/IMG_4801.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5343483319956132514" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjT9TXAyJv4Dr6NrnuNcjDwhtaA-LmXyOoZ9W_obYQXKva3eRQQL-HEI2J7dS9-Hh2VEiJr1LQd-koQZd7LcB-PL6yY3D7VK_yFy6P1Lx70FcH65ZRiDNTFctwT0Tu17qprxrd/s1600-h/IMG_4795.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 206px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjT9TXAyJv4Dr6NrnuNcjDwhtaA-LmXyOoZ9W_obYQXKva3eRQQL-HEI2J7dS9-Hh2VEiJr1LQd-koQZd7LcB-PL6yY3D7VK_yFy6P1Lx70FcH65ZRiDNTFctwT0Tu17qprxrd/s320/IMG_4795.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5343483313654432978" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsyJhaEn6pMosnwqAmtjNH89G3XrCmsBa0lTNUwYFO5hjzPEF4nOguGVIXieRTWdLk-2EI3h37awKSgZGmEUk37qsasj_q28tixlm7wKdKS3Ppr2p1muJuv_H_OjyDSu_h21PZ/s1600-h/IMG_4794.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 198px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsyJhaEn6pMosnwqAmtjNH89G3XrCmsBa0lTNUwYFO5hjzPEF4nOguGVIXieRTWdLk-2EI3h37awKSgZGmEUk37qsasj_q28tixlm7wKdKS3Ppr2p1muJuv_H_OjyDSu_h21PZ/s320/IMG_4794.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5343483315797492162" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI2RPKR_qO7TRPdRrffT5_R-GpfI17kC2oZ8urWxU7s-mxI0YrO5VdiyjkOlScmw5UWnHCCnCFd8sQnuWdvju1QleenvLk74xUM7q6T-F3xhnH6ZCL_INoYT2iodEyQEaLRpJR/s1600-h/IMG_4793.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 241px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI2RPKR_qO7TRPdRrffT5_R-GpfI17kC2oZ8urWxU7s-mxI0YrO5VdiyjkOlScmw5UWnHCCnCFd8sQnuWdvju1QleenvLk74xUM7q6T-F3xhnH6ZCL_INoYT2iodEyQEaLRpJR/s320/IMG_4793.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5343483314224286690" /></a>-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-62380345088126981812009-06-02T12:02:00.001-04:002009-06-02T12:02:47.778-04:00enhansa updatei 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.<br /><br />so who knows. i may increase his dose by 75mgs and see if i see anything different.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com1tag:blogger.com,1999:blog-20886863.post-51641946537856891802009-05-21T19:21:00.004-04:002009-05-21T19:32:12.304-04:00enhansaI 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.<br /><br />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.<br /><br />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". <br /><br />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.<br /><br />So, will report more next week (or sooner if needed) regarding the Enhansa and the results.<br /><br />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.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com1tag:blogger.com,1999:blog-20886863.post-86219204510995276932009-05-12T13:17:00.003-04:002009-05-12T13:22:17.790-04:00DAN! UpdateWe 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.<br /><br />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.<br /><br />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'. <br /><br />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!<br /><br />So...we march on!-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-18466985168305792042009-05-10T20:07:00.003-04:002009-05-10T20:13:22.521-04:00the normal ups and downsAs 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. <br /><br />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. <br /><br />Who knows why. I don't know if it's possible for it to be caused by the chelation last night. I suppose it <em>could</em> be...maybe we just got a great pull with this round? Or, maybe he just felt better today, physically. <br /><br />Whatever it was ... it made my Mother's Day the best ever.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-66099249845668253732009-05-07T10:21:00.003-04:002009-05-07T10:28:43.846-04:00downerI 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. <br /><br />My ideas:<br /><br />- 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).<br /><br />-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??<br /><br />-I've given him OoO twice since Saturday - just a few drops at a time. ?????<br /><br />-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.<br /><br />????????-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-63786200953460753252009-04-24T17:26:00.001-04:002009-04-24T17:27:13.267-04:00daily 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."-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-83034774747009810052009-04-24T12:33:00.004-04:002009-04-24T17:26:21.078-04:00some updates from schoolI 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."<br /><br />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. <br /><br />So, I emailed to ask for a little more explanation and here's her response:<br />---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”).<br /><br />I emailed her back and asked how many words or approximations she thinks he has at this point. This is her response to me:<br />---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<br />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.<br /><br />Let me just pull out the <em><strong>high points </strong></em>of that email conversation, as far as I'm concerned. <br /><br /><em><strong>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.<br /><br />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”).<br /><br />3. unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say.</strong></em> (I think his unprompted is higher, so I'm going to create a notebook to keep track of everything he says that's unprompted).<br /><br /><strong>4. he loves saying his words<br /><br />5. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.</strong><em></em><br /><br />The update couldn't get much better in my eyes.-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0tag:blogger.com,1999:blog-20886863.post-82119467032048150332009-04-22T17:54:00.001-04:002009-04-22T17:55:35.105-04:00Jim Carrey's Article re: VaccinesClick on the title of the post to read the article. It's worth the time!-Rhondahttp://www.blogger.com/profile/08883968488839137856noreply@blogger.com0