1st ds diagnosed with autism, now 2nd ds may have sensory integration disorder!

[Florida_Mom]

I homeschool this particular child and the only service the school system will provide is speech. He is just not school material so it's not even an option for him to go --private or public. IF there were to ever offer special ed classes as pull out all day (about 8 per class) then I might consider it but he would basically just sit in a chair and waste away all school year. How many years can they hold them back??? The last thing the case worker was working on was trying to get him back to the orthopedic doctor as his joints are hurting him now. His skeletal xray only showed clynidactyl(SP) of the small fingers but hey, if that's enough to get him seen, then I'll go with that. And his last referral was an OT prescription it was just done by the neuro, which would have been fine if we had seen her in their "clinic" and not by private office visit. Now that I've thought about this today, I am going to call her tomorrow and have her call the other doctor that should see him (basic neuro problems) so she can tell the doctor my ds needs to be seen. Like I said, she is a very reputable doctor and was well established in this state run program but cut back some duties due to her growing family. It's just VERY frustrating when they are 10 yrs old and they are rated between ages 5 - 7 yrs on abilities. You think someone out there would realize that they need help (including our insurance co.)

LMC, you are definitely in my prayers. It is so frustrating when it seems like no one will be an advocate for your child but you. This is how I felt with DS8, but I realized in my particular case that there was help out there, but I just had to work through the maze to get there, make the best decisions for my family, and at times really be driven to the point of perhaps being annoying. Keep working on every angle and talk to people. That is how I wound up with the wonderful OT that my son is seeing now. Keep up with professional organizations that deal with these issues and talk to them about options.

In Florida, speech therapy is sort of the "gateway" therapy to everything else. So, if a child is determined as needing speech, then he may be able to qualify for other types of therapy beyond that. Perhaps talking with the therapist will gain you some additional ideas and options?

I really hope you can find the help you want for your son. Please keep up posted.

 

[Mish]

My DS (7) has SID, and ADHD, The SID has gotten a lot better with OT, (he is still receiving it 3X a week). He still does not like to eat certain things, but has gotten better at trying. I have to cut all the strings off of his pants and tags out of some things, not all. He used to not touch a lot of things. I will never forget the first time he touched whip cream and stood in sand, screamed like someone was killing him. My son has been receiving services since he was 15 months old. He receives PT, OT and speech. He is in an inclusion class and now is first grade. He has a lot of problems sitting but since he gags on everything we have been unable to get him to try any medications. Thanks to patient teachers they are doing their best to keep him focused. It has not cost us anything for any of his services and I would check with your school district to find out what they offer. If you have any questions of feel like just talking please feel free to email me.

 

[LMC]

My DS (7) has SID, and ADHD, The SID has gotten a lot better with OT, (he is still receiving it 3X a week). He still does not like to eat certain things, but has gotten better at trying. I have to cut all the strings off of his pants and tags out of some things, not all. He used to not touch a lot of things. I will never forget the first time he touched whip cream and stood in sand, screamed like someone was killing him. My son has been receiving services since he was 15 months old. ....since he gags on everything we have been unable to get him to try any medications.

This is so funny. When my DS was young and we would go to the beach, he would wear his socks and tennis shoes (hello grandpa!). He would keep them on until they got so soaked and sandy he couldn't stand it and then he would just sit on the blanket. I remember going with my niece who is extremely ADHHHHHHD and she was running around like a maniac and my sister was chasing her, I followed them and am taking their pics and my sister asks if I am worried if my DS will wander off, I said "he isn't going anywhere (he had no shoes on)". He stayed on that blanket the entire time. I felt sorry for him but he didn't seem to mind. Like most things, he tends to stay back, watch and have his "own good time" while others play. He also has SID really bad and trying to medicate is awful. He is suppose to be taking prevacid right now before our return visit to the doc in a couple of weeks but I can't get it down him. Then, I am finally, after 4 yrs going to try ADD meds, but I'm not too hopeful that I can sneak it in thru jello. I have heard there is a patch coming out so maybe we can use that, but he can't stand bandaids so that will be interesting too.
As far as school this is probably was TMI but here is a synopsis of his conditions:
Kabuki Syndrome, low IQ, GAF below 50, hypotonia, vestibular occular dysfunction, SID, dyspraxia, dyslexia, receptive/expressive language deficits, non verbal learning disorder, visual motor problems (memory, processing, retention, foreground processing). And he received a "diagnosis" or rating on all four axis, whatever that means. He also has autistic tendancies but no one has diagnosed anything on the spectrum yet. Of course all of this really means little except to get services for him when he needs them.

 

[Bugsmom73]

I too would recommend The Out of Sync Child and At Play with the OUt of SYnc child. DS was just dx with SID and the sooner you get therapy started the better off the child will be and it doesn't necessarily follow that if your child is in a special ed preschool that they will be in special ed classes their entire school career.

Good luck and feel free to PM as we will be going through this journey togetther. BTW, my son is hypo-responsive but his cousin in hyper-responsive and has not been formally diagnosed.

 

[Calliaz]

I've come to this thread late, but I thought I'd post in case anyone is still reading. My DS (almost 3) was finally diagnosed with a SID-related disorder and I think a full-blown SID diagnosis is on the horizon. He has dysphagia and had been aspirating fluids because he is "out of sync." He shows signs of both being hypo- and hyper-responsive to different stimuli. I'm just getting started on the journey and attempting to create a program of OT, ST, etc. that will help him overcome his challenges.

 

[ffwife]

I , too have a child with PDD-NOS and SI. The SI seems to be more of a problem. Smells bother him as do some clothes. We have found that doing hard massages to his entire body calms him down.
Not everything will work for everybody. It took us about 2 years to find something that worked for him. And I'm sure that we'll have to change that as he grows. My advice for anyone dealing with this would be to get involved in the therapy and continue to do it. Change is a BIG problem for children with ASD. The more you are involved, the better it becomes. Good Luck to all.

 

[ffwife]

Horse back riding is a great one. Another one to try is ANY resistance. Running up a hill. jumping like a kangaroo, bouncing on a exercise ball, carring heavy things around the house. Horse back riding can be very expensive. Try ANYTHING that will stimulate the entire body