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Old 06-24-2003, 04:33 PM   #1
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Chaos247 HB User
Post Question about my nephew

Hello. I am fairly new to Healthboards and usually I am on diabetes or thyroid but have been reading the support here and it looks great so I have a few questions.
My nephew is Autistic. My sister in law claims he is high functioning and I had my doubts. Maybe I do not understand high functioning but I would guess it to be alot better than he is. He will be 5 in November and is a very large child. He weighs 68 lbs. He was 11 when born. He spoke a few words until 18 months old then stopped. He also did not walk until 18 months old. The spinning items and flapping hands started earlier on. He still continues all this behavior and has added new ones since.
He is in a early education program. He does not speak at all. He can feed himself by hand but does not eat sweets. He eats walking around or on his back with his head tilted upside down. It worries me he will choke. He is very much into junk food such as potato chips. (Has only recently ate mashed potatoes). He is very limited on what he eats. Mostly meat and chips. He recently ate applesauce for his teacher at school but will not for his Mom and Dad at home. I guess I am asking how much of this is autism and how much could be helped (such as being a stubborn child which he does exibit signs of this but is easy to confuse the two.) He will not eat with silverware. He does wear clothes to school but will not at home. He is not potty trained and seems to not be interested at all. He even plays in his feces. He does not feel comfortable with other folks around and does not interact except with his mother and that is more like she is his servant instead of a mother son relationship. He knows he can depend on her. Does not interact with father at all. On a good day if he gets close enough and is in a good mood you can "tickle him" and he will giggle. This is mostly with family only. When his teacher changed at school it sent him into a tizzy,,bless his heart he hates change and I know that is part of it. He has several routines. He will spin items incessantly and loves to play with all the silverware in a metal bowl yet does not like loud noises from someone else. He loves to play in the water whether a bath or the water hose. He does laugh but only to himself when nothing funny is happening. This is only a short list of things he does I am sure I am leaving alot out but would this be high functioning? My husband and I do not think so. He has made very few strides in improvement and has been diagnosed since 3. Any advice would be appreciated. My sister in law is a very good mother and reads everything. I would love to be able to help her more. She never complains and has so much love and patience for this child. I would love to be able to watch him so she could get away but at this point would be impossible. She is aware of gluten free diet and vitamins but how do you get a child that cannot understand he cannot eat what he wants or one that is unable/will not swallow pills. He does take a Flinstone vitamin but she has to crush that and hide it in his juice. He will not drink milk.
Sorry this was so long. Thank you in advance for listening.

 
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Old 06-25-2003, 02:03 PM   #2
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Well, first of all,I am no professional. I am a mother of an autistic four year old boy. I can give you some advice and some things that have failed for me. First the gluten/casin free diet. I am not really sure how well it helped my son. We really did not see the kind of improvement we were hoping for. He also started to lose weight. (he has always been incredibly thin). We decided to stop the diet after three months because of the weight issue. We did keep milk out of his diet. He was recently given milk by his gtrandmother and he was a living nightmare for a week. We make sure everyone knows he is not to receive milk. I have met quite a few people who have had great success with the diet. All autistic children are so different. Secon, the potty training issue. We needed a urine sample from my son. The doctor tapped a bag around him and we waited. We pumped him full of juice and water and we still waited. After four hours, we realized he was not going to go. We explained to our doctor we were taking off the bag and going home. A few days later, our son was in the bath tub. He was acting like he needed to go to the bathroom. We took him out of the bath and placed him in front of the toilet. He would not go. As soon as we put a diaper on him, he went. It was pretty frustraring but I realized he could hold it. I decide I had enough. I went out and bought him underwear. I put him in it and waited. He did go in his pants but he did not like the feeling of wet pants. We told him he had to go in the potty. (I had also sent away for a free potty trining kit from charmin. It is on their website) Our son has had a few accidents, but for the most part, he is potty trained. Third, about the vitamin supplements. Our son is on quite a few. Some are a liquid and he actually likes them. (The doctor has informed me it is because he is laking them so they actually taste good) The rest we get the capsules that you can take apart and add to juice. We also give put them in chocolate soy milk or sometimes I make him a fruit smoothie. He never even knows he is taking them. Finally, find a DAN doctor. They are usually pediatritians that specialize in autism. I have two (a pediatritian and an allergist) There is a list of them on the ARI (Autism research institute) website. One of my DAN doctors takes insurance (the pediatrician) the other (the allergist) does not. I also have a great neurologist for my son who doesn't mind me calling him often and is not closed to the chance that Ryan may benefit from having supplements. Now I have been the long winded one. I hope this helps you. Oh, one more thing, about the babysitting. If you can find any way to make this happen, I will personally tell you it will help his mother so much just to get away. Even if it is for an hour while she does her grocery shopping. Maybe if you try it for short times at first. I know how hard change is. It just takes time for change to become routine. Good luck.

[This message has been edited by Joanne (edited 06-25-2003).]

 
Old 06-25-2003, 03:23 PM   #3
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Talking

Thank you Joanne you had some really good points and advice. I cannot wait to talk to my sister in law about them. Soy chocolate milk would be great except he hates chocolate..he will not drink regular milk either so he would probably not drink the soy. Will have her ask her pediatrician about mixing certain vitamins with juice since I know it cancels some out on some types of meds. WIll definitely tell her about the liquids and capsules.
My husband said he would watch him with me so she could get away for a bit. We both love him so much and just feel helpless at times on what we can do. I did get a little "joy" yesterday. He smiled at me. Really made eye contact and smiled. I cried all the way home. It makes you appreciate the little things so much more having an autistic child, I have noticed that.
He is already having signs of knowing that doing it in the pull up is nasty. He will remove them..sometimes too promptly if you know what I mean.
Again thanks so much for your help you answered all my questions. I still do not fully understand high functioning but I am sure I soon will. There are so many informed moms on this board. To me it would mean he could someday take care of hisself and be in society working at the least. That he could talk and commmunicate in some way. Am I wrong? I could not see that in him at this point. But we have plenty of time..
Take care hope to chat again sometime!!

 
Old 06-25-2003, 10:00 PM   #4
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I am so happy he smiled at you. I understand fully the joy you get from every little thing from autistic children. My son was diagnosed at 2 1/2 years old. He had 2 words and was just in general a horrible little boy. Very violent and confrontational. Now at four Ryan has around 30 words and his temper is more under control. We used lots of sign language. Never give up hope. I also have dreams of Ryan going to his prom, finishing high school, getting a job, and having a family. I will never give up. I will continue to push him, try new things and eventually get him out of this horrible spectrum. Tell your sister in law to hang in there. At least she has you as her angel. Take care.

 
Old 06-25-2003, 10:06 PM   #5
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Your son seems to be making great strides. I am so happy for you. It does give me hope to hear of things like that. My brother once said that the doctor said that Brandon may never talk, and that if he did that was great and if he didn't that was fine too. They have such a great attitude. (his parents).
I have really enjoyed chatting with you..Take care!!

 
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