What type of therapy is for sensory disorder?? Questions about PDD-NOS diagnosis?

My 16 month old son was shown to have a duplication on chromosome 16p. That chromosome area of the duplication is linked to autism/autism spectrum. It is a high risk, but not definite that a child would be autistic. My son is receiving therapy 1x a week for each swallowing, and PT. They said he passed the fine motor skills benchmark (OT) and was discharged from that. While he is making progress with the PT, he still isn't walking yet w/o support. Then he tires out very quickly, and shakes a lot. Hypotonia is a characteristic of that chromosome.



He is VERY sensitive to sounds and textures. Giving a bath can literally be a scream. We are working on that in the pool. Every time he splashes himself, he reacts almost like a panic reaction. If I go to roll down the cereal bag before I close the top of the box, he startles in his booster chair. I'm asthmatic. Whenever I cough or sneeze, he nearly jumps out of my lap. I try to plug his ears when I need to cough. What type of therapy addresses this?? I brought it up to the OT therapist and she said she saw it too. She never made any suggestion as to what to try. He obviously needs help with that. Nobody want to tell me what to ask for because "they aren't doctors". Please tell me what to ask for.



His neurologist, once the chromosome test came back, seemed to write him off. He has seizures that 3 people have seen. They resemble absence seizures and infantile spasms, and constant jerks that awaken him when he tries to sleep. He was sick one night and I had to hold him all night. He must have had 80+ jerks/spasms that night. Everybody had had one, but not 80 in a night. Now since the diagnosis, the doctor seems comfortable just to chalk everything up to the chromosome issue. While some of the things could be contributed to it, seizures rarely are. He gave him one EEG and that came out normal. Well he didn't have any seizures during that time. His MRI showed benign extra axial fluid of infancy with some atrophy. I personally don't see how it is benign. He did offer to put him in the hospital for 2-3 days to constantly monitor him. With his sensory issues, he becomes throwing up hysterical with the leads on his head. I think a 2-3 day stay would be torture for him, and maybe traumatic. I know what I saw. I don't think the neurologist believes me. He made a comment that eyes can roll back in your head and the body go limp with reflux (which he does have). I'm not buying his crap.



He told me he was referring him to a psychiatrist . He said that he thinks he has PDD-NOS. I think it is kinda young to be diagnosed don't you? I sense that he has given up hope for him. I refuse to do that. Many children with the chromosome walk and talk. While some have low IQ's, it doesn't apply to everyone. One child tested with an IQ of 135, which is higher then the vast majority of people. Would the diagnosis of PDD-NOS open more therapies up to him? Or do you think that once he has that, that more people will write him off?



He isn't talking at all yet, yet he will sometimes mimic a few sounds with you. If I showed him two pictures and asked him to point to a cat (cat vs. dog) he couldn't do it. He sometimes rocks and hand flaps, but not all the time. Sometimes he will look at you in the face, but other times, I have trouble getting his attention. He tends to be very quiet and happy. If you play peek a boo, he will laugh. He does show some intelligence, like taking items apart and putting the correct item back in the correct container, where it came from. Even his therapist was amazed when she saw that. He does seem to get bored easily.



I keep seeing ABA therapy. What is that? Where do I find out how to get it?



He isn't speaking at all yet. Right now they are concentrating on the swallowing difficulty first. His hearing tested fine. Shouldn't he also get speech therapy. He is 16.5 months old, and doesn't say one word. How much therapy should he be getting for speech at this time? I had him screened for the early intervention through the state. He was approved for speech but that 3.5 months ago, and he still hasn't been seen for any therapy. I called them, and they said this therapy of 1x a week through the medical insurance was enough. I don't agree. He has an evaluation with maxillofacial next week for a cross-bite. Maybe they can give me guidance.





Any feelings on the matter or suggestions? Past experiences are helpful too:)What type of therapy is for sensory disorder?? Questions about PDD-NOS diagnosis?
Personally, I think if this were MY child I would find a different neurologist. The one you have right now is not respecting your knowledge of your child. Most parents of children with special needs know children can have seizures and a "normal" EEG. You should also find a pediatrician who specializes in children with Special Needs. It would be ideal if you can find a Developmental Pediatrician. Find doctors you are willing to treat you as part of your son's "team". They can be hard to find but it will be worth the effort.



The key to ANY Special Ed program is to be the squeaky wheel. You want to be seen as the very involved parent who will do ALL it takes to help your child. Be respectful and keep asking for what you believe your child needs. At this point one session of speech therapy "might" be enough but ask WHY they believe more wouldn't be helpful.Do not accept budget or lack of funds as a reason. The law requires that children receive the services they need. Like I said be respectful but make sure you are assertive with your requests. If you don't ask you probably won't receive all the services your son needs.



My son with Aspergers is 19 and never received ABA so I can't really comment on that, but your son may benefit from ABA. Early Intervention should be able to give you more information and there is tons of information online. You can hire private therapists to provide therapy in your home if you desire.



Raising a child with Special Needs is very challenging at times but so rewarding. Keep advocating for your child and NEVER give up. When my son was eight years old a speech pathologist, who I really liked and respected, told me she felt he would probably need a group home or assisted living as an adult. He is 19 and still living at home but he WILL be on his own someday. His personal goal is to be in his own home when he is 24. I think that is quite reasonable and likely to happen.What type of therapy is for sensory disorder?? Questions about PDD-NOS diagnosis?
work very closely with his therapist %26amp; specialist. if you find a new therapy, discuss it with them. your input is important.What type of therapy is for sensory disorder?? Questions about PDD-NOS diagnosis?
He should be getting speech therapy at least once a week if not twice. At first my son was only getting speech once a week but I demanded he be seen twice a week. He is 28 months old and is improving in his speech but still has a very limited vocabulary. Make your wishes heard and demand that he be seen twice a week.... being that he isn't talking at all Early Intervention just definitely approve this wish. I believe the OT should be working on the sensory issues... Early Intervention reevaluates your child every 6 months.... So if 6 months ago he didn't qualify to received OT, he may now. I suggest having him reevaluated to see what services he qualifies for. If he was approved for speech therapy 3.5 months ago and still hasn't received any therapy you need to tell your Early Intervention service coordinator asap. Tell them that he hasn't be seen for any therapy and that you want him to start speech therapy asap and tell them you want it twice a week (if thats what you want)... You are his parent, you need to make your wished known, and the service coordinator wants you to be happy with the services you are receiving so it has been my experience that they will give you what you want. Also if you are not happy with a certain teacher you can always ask for someone different. Like if you don't like the OT person (for example) you can ask for a different OT person. Again you'd have to ask the service coordinator. So my advise is call your Early Intervention service coordinator...unfortunately I don't think there's much you can do if he doesn't qualify for a certain service but you think he should. But even if he doesn't qualify now he may qualify 6 months from now. I hope this helps at least some!