Newbie and overwhelmed by information available - Autism Spectrum Message Board

mommy of 2 wonderful boys · 07-10-2003, 05:25 PM

Hello everyone. I'm a newbie to the board and very happy to have found an autism support board like this one. I have a 3 year old son named Kyle who was diagnosed with atypical autism at 2 years old. He was also diagnosed with PDD a little later. I'm still confused by these diagnosis and the doctors don't explain to me fully what they mean (sometimes I think they don't even know what it means). I also have a younger son, Austin who is currently undergoing evaluations (he just turned 2). I have been so overwhelmed by all the information thrown at me by doctors and 'specialists' and by the research on the internet. Does anyone else feel this way? Diets, immunizations, secretin, therapies, special education, caregivers, heavy metal retention, biomedical treatments, etc. etc. etc. My mind is in a whirlwind and I almost don't know where to begin. It would be nice if I could get a definitive diagnosis for Kyle so that I could start a more individualized plan to help him. He is now 3 1/2 and goes to special education preschool at a regular elementary school. When he was born, he was 6 weeks premature and had to stay in the NICU for 10 days because of trouble breathing the first day, and then very bad jaundice afterwards. I noticed right away that he did not make a lot of eye contact as most babies usually do but seemed to look around us. As he got older, he seemed to be developing normally in every other area except for speech. At his 15 month well baby check up, the doctor expressed concern about his speech and recommended some evaluations. This eventually led to early intervention services. Some of the symptoms he had along with no speech was an inability to switch from one activity to another (he would have a massive screaming fit), and difficulty with change. He could not sit for circle and song time but would walk around the classroom avoiding the teacher and other children. He had a huge change in behavior after I took him off milk and dairy products. Increased eye contact and sitting and even participating some during circle time. I had also avoided getting him the MMR shot because I was worried it would harm him even more. The way the doctors and nurses treated me when I refused the shot was mortifying. They would continually point out that there was no real correlation between the two and would berate me for not getting him the immunization. Then treat me like an idiot when I still refused. I eventually got it for him a little after he turned 3 but it still makes me angry when I think about it. After we moved to Hawaii, he started the preschool program here. The special education teacher he has is very soft spoken and does not have any experience with autistic children. On Kyle's first day there, I asked if I could sit in the classroom in case he had one of his fits from being in a new situation. At first she said it was fine but when the day came, she asked me not to be in the class room as she was afraid it would distract the other students. I stood outside the whole time confused because in Kyle's early intervention class, they actively encouraged parent participation. Now in the school system, the discourage it and it's been difficult for me since I like to see Kyle's progress first hand. She also has only 3 other student's in her class but none of them have an autism diagnosis. One has motor skill problems while the other two have behavioral problems. They all talk well though and the hope is that Kyle will learn from this. However, he has now obtained some bad behavior himself such as not listening to me when I scold him (before he would) and some hitting behaviors. I'm not sure if I should try to find another school more suited to him or try a 'wait and see' approach. He has had some progress from being in this school such as cleaning up after himself and speaking a little more. I'm very tempted to start him on the gluten and cassein free diet and start him also on the vitamin B6 and magnesium in the hopes that it will help him even more. Would love to hear from other moms who have tried these. Sorry this is so long. It feels great to write about it though and I hope to find others in a similar situation. Thanks for reading and looking forward to meeting you!

momof wildchilds · 07-10-2003, 08:43 PM

Wow, it sounds like you have your hands full, but are handling things very well. I have 2 autistic boys (aged 8 and 6). We did ABA in home therapy for both. My oldest son was a best outcome child, but my middle was not so lucky, though we are still holding out hope for that miracle breakthrough. I also have a 2 year old son who is in early childhood, but I really think he is going to be fine. I think it is great that your doctor suggested the early evaluations. My doctor would always take the "let's see how he is doing in 6 months" approach. At least with my second son, we knew what we were looking at right away. I don't have any experience with the diet, however, a couple of my friends have tried it (and are still doing it now), but have not noticed any change. I have been to a lot of other sites were they swear by it though. Keep your chin up, you seem to be looking at all options, and I have found that different things work well for different kids. Good luck and take care!

Britmum · 07-11-2003, 05:46 AM

Hi I have a son with aspergers he's 10 and I found that taking him off foods with additives and preservatives helped and isnt that hard to do once you get started and I did notice a change within about two weeks he was calmer and his attention improved a little but any little helps! I know my son is very picky with food but if you stick with it it may help. Hope this is of some use, take care.

rids · 07-11-2003, 06:57 PM

Corn, corn syrup, foods high in phenols, dyes, preservatives, sugar..... are all reasons why purely GFCF or SCD is not always the answer. Also, you cannot remove just "dairy" and "wheat"... there are many ingredient names for both casein & gluten. It is very important to supplement with high quality vitamins, minerals and probiotics, along with enzymes to heal the gut, and GSE to kill the yeast. Some kids respond to GFCF, some to SCD, or CF- some to none.

[This message has been edited by rids (edited 07-11-2003).]

mommy of 2 wonderful boys · 07-12-2003, 07:19 PM

Thank you all for your posts. I appreciate the advice given and will definitely look into it. I haven't yet started him on the gluten and casein free diet but would like to try it very soon. Especially since stopping the dairy products really seemed to help him. Thanks again!