Kimslat
05-02-2005, 04:48 AM
I am new to the forums and I would like to share my experience with my son. First, let me say that every child with autism is different. There is no perfect cookie-cutter therapy or medicine or diet that will have the same effect on every person with autism. My child is eight with high functioning autism. Four years ago he was a completely different child. Non-verbal, hyper, aggressive, high pain threshold, fearless, repetitive OCD behaviors, raging tantrums, and did not sleep more than 3 or 4 hours a night at the very most. He was kicked out of numerous daycare centers, displayed various stem behaviors, and limited interactions with peers to snatching toys and hitting them. Today he "blends in" with his peers so well that people do not realize he is "different" unless they are told, and most say they would never have guessed or want to know how he got that diagnosis. He is functioning on grade level without an aide, and is not only social, but popular. It has been a long journey of trial and error. Things that have worked for others have failed to help Patrick and things that I believe have helped him have failed others. Most of his developmental jumps have been swift, going from very low skill level to catching up fast. If I had Patrick on the GFCF diet I would probably have given it credit, but I never did try the diet. I honestly did not feel I could take that on. He was a very picky eater, and very difficult to manage, and I was EXISTING on very little sleep, and it was all I could do to keep him safe and meet his needs. There are things I believe helped him, but it is impossible to know if he would have made the same "jumps" regardless. I truly believe that Ritalin helped him focus enough so that he could process language. He started the medicine (then a non-verbal four year old) and a couple of weeks later he started using words and talking at an amazing rate. I might add that it was not the first drug we tried, and it was not given to help him talk. It was for the hyperactivity (which it also proved helpful for), and Adderall which is in the same "family” was a disaster and made him much worse. He had early intervention, OT (another thing I believe was extremely helpful), speech, 2 years of full day public school program for kids with developmental delays before starting kindergarten, and he had me. I read, I went to conferences, I took him to different doctors, I tried different therapies, I advocated for him at school, I tried different medicines, vitamins, etc, and I believed in him, loved him, and pushed him. I do not believe that any one thing is responsible for all of his progress. I do not believe I can tell any other parent this worked for my kid, it will work for yours. You must try this or that, or you are irresponsible. That is just not right. My advice to other parents is to educate yourself on the options, keep an open mind, try different things, and go with your gut feelings. As for the sleep, I know what finally worked after trying every trick in the book and just about every med the doctors could think of. Trazodone, 75 mg at bedtime and no side effects. He sleeps all night, and appears well rested, and I am able to do more for him because I am well rested. I understand those who don't want to "drug" their children. No parent wants their child to be like a zombie, but zombie = too high a dose or wrong medication. Still, it is their choice to decide what is best for their child. Finding the meds and doses which help my child has been tedious and expensive. Anything antihistamine based made him more hyper. Some meds have made him aggressive, and wilder. Some have had unpleasant side effects. Trial and error. He currently takes Concerta, Risperdal, Buspar, and of course the Trazodone. It sounds like a lot, but his Psychiatrist says they are small doses, and safe. He has no noticeable side effects. Concerta tends to cut appetite while Risperdal usually causes weight gain. I think they cancel each other out in that regard. They each address different issues, including hyperactivity, anxiety, sleep, impulse control, frustration tolerance, and aggression. I personally feel most aggression in autistic children is directly related to frustration and anxiety; frustration - they don't understand me, and anxiety - I don't understand them. Remove any one med from the mix and school success as well as social behavior is affected. Most importantly Patrick is noticeably happier with medication. He knows it helps him, and wants to take it. He is bright eyed, lively, outgoing, and pleasant to be around. He feels better about himself, because he isn't always in trouble and he has more control over his behavior. On the rare occasion I forget to give it to him, the school calls within the first 30 minutes. It makes that much of a noticeable difference. So, at least for Patrick, I believe strongly in medicine. But, for every therapy out there, there are parents who believe it worked miracles for their child. Maybe it did, and maybe it can help your child; or maybe it did, but maybe it won't. Maybe their child would have had a developmental jump regardless. Nobody can say 100% for sure. Maybe something that didn't help their child will help yours. Maybe all autism is not caused by the same thing. Maybe heavy metals caused some, and genetics caused some, and head injuries caused some, and inability to digest gluten and casein caused some. Who knows? Nobody can say 100% for sure. However, we do need to be supportive of each other, because "others" can be hard enough on parent's of autistic children. I know people have said "all he needs is a good spanking”,” what a brat", "they need to control their kid”,” she needs to force him to eat different foods", "if that was my child I'd ...", "They want their kids to be like zombies so they don't have to parent them", and "He knows exactly what he is doing, he is just spoiled". I have also found the more "normal" you appear, the more that is expected, and the less forgiving the world is. I hope someone finds reading my experience helpful. It has been rough, but has also been rewarding, and he is the light of my life, and I am blessed to be his mom. ~Kim Slattery