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

[Nik's Mom]

Hi all! You all comforted me several months back when I suspected that my youngest ds might be autistic. Well, a pediatric neurologist ruled that out, but they are suspicious that he might have SID or maybe something else. They say he definitely needs speech therapy and may need special ed day classes. He's only 3 and we just found this out today. So now I'm feeling real sorry for my family. Here we have an autistic 6 year old and a 3 year old with God-knows-what. I just keep thinking, what did I do wrong. Did I not have a good diet during pregnancy, did I not take good care of myself or something!
Does anyone know about SID. We will be meeting with a school pschologist after Christmas break. That is such a long time to just sit here wondering... Thanks for letting me have my break-down.

[JenJen]

I am sorry to hear about the DX's :-(

Just so you know my DS 13 has aspergers and my DD 10 has ADHD with SID and she gets all A's in school!!! So you never know!!!! She is a bit on the obsessive side I think that is why she obsesses about her school work but hey whatever works. As they get older there SID gets not as apparent. It is still there because I have asked them but they tend to deal with it or cope with it better.

((((((((((((((((hugs)))))))))))))))
Jen

[JenJen]

I just wanted to point out it has nothing to do with anything you did during your pregnancy. You could have drank water, rice, and organic food your entire pregnancy and this still could have happened so please do not blame yourself!!!
You asked if anyone knows about SID's. Yes very much so and I am sure you do having a child in the spectrium yourself. It is when everything is over amplified for the child like when your son covers his ears because of loud noises, or gets over whelmed when there is too much going on in his environment. Also a lot of times certain clothes irritate them so they wear loose clothing or they will wear the same thing over and over because they know that particular outfit is comfortable for them. Both of my kids eat the same foods all the time and have a hard time trying new things because certain textures of foods bother there mouths. Sometimes certain lights bother them and at times they don't like to be touched because a simple touch or a tap can be felt for 30 or 40 mins.
I hope that helps a bit.
(((((((((((((hugs))))))))))))))
Jen

[Nik's Mom]

Thanks for sharing. :grouphug:

[riu girl]

DD (ADHD, anxiety, SAD, mild sensory issues) was diagnosed with SID when she was 3/4 BUT the OT who diagnosed her said that 90% of kids who walked in off the street would score positive using the assessment tool she HAD to use(she was in the process of getting a different assessment tool).

DDs Sensory issues were obvious from birth, she especially couldn't tolerate anything in her mouth/throat/stomach and therefore, spent most of first three years dehydrated/ill/on IV/failure to thrive baby. A feeding tube was also suggested on many occasions. She was diagnosed with bulimia/aneroxia by 15 months (talk about freaky watching your baby stick her finger down her throat to vomit and to stop her hand flapping). It was a freaky time. I want to share this with you not to let you think that SID is awful BUT to tell you how there can so much improvement.

I agree with JENJEN: for many sensory kids, as they get used to the sensory input, the sensory issues lessen. Looking at DD8 now, I would now call her a mild sensory kid and we don't see sensory behaviours much except in high stim/overly exciting environments.

So just go with whatever therapy is offered. We had tons since DD was failure to thrive for an extended period.
DD(now 8) has overcome almost all eating/swallowing sensory issues (except combined foods such as chinese, sauces and a few cereals). She is by far the chubbiest kid in her class and is as healthy as a kid gets. Plus she eats amazingly well!!!!!!

So don't worry, with sensory therapy, just about ANYTHING is possible.
I watch her now eat and just want to cry (from happiness). It definately played a number on my mind watching her like that for so long. I am probably one of the few moms who is happy to have such a chubby kid who eats all day long.

Good luck with what ever therapy you have available and do as much of it as you are able.
Suzy V

[Rosie]

Your DS is 3 and he is going to get some help from professionals and lots of help from his mum!;)

We all know how hard to bear it is to hear those fears we have confirmed. My DS used to go crazy at the age of 4 if he had to go somewhere noisy. At school when he was 5 I often had to go and comfort him because he was so upset about the echoing in the School Hall, and of course he wouldn't let anyone else near him. Now at age 11 he manages so well with noise I am really proud of him! We used earplugs on our April trip to WDW and we still have them, but he watched Fireworks recently without them.

Food is still an issue and he is a very thin young man with a restricted diet - BUT he is improving all the time. Support patience and love can work wonders and lets just be grateful that for our children there is help available. When I think back to my schooldays I can remember some very sad and bewildered little boys with similar behaviour to my DS's who just got beaten.:guilty:
I hope you all enjoy Christmas together and the time passes as quickly as it can for you.

[Figment1964]

Does anyone know about SID. We will be meeting with a school pschologist after Christmas break. That is such a long time to just sit here wondering... Thanks for letting me have my break-down.

Hugs to you!

I would recommend the book The Out of Sync Child by Carol Kranowitz. It helped me understand sensory issues and gave me some practical things to do to help.

Best wishes!

[Nik's Mom]

Thanks to you all for your comforting words. I feel better today. I know it's not the end of the world. Thanks again for the :grouphug: .

[mtnprotracy]

My ds (age 6, former preemie) was dx'ed with SID almost immediately after birth through our EI services. He has some autistic tendancies (non-verbal, some repetive behaviors), but I think a lot of his issues are sensory related. We have never received a formal dx. I also recommend reading the Out of Sync Child. I felt better with more information since I'm an information junkie :flower: . With services through PT, OT & ST, Zeke is now much less sensory. He will actually walk through grass...much like a Clidesdale (sp?!?!?!?) horse, but he does it :cool1: After reading the Out of Sync book, I realized most of us have some sensory issues. Zeke needs lots of vestibular stimulation and proprioseptive input. We did brushing and compressions when he was really small to kind of desensitize his skin.

Hang in there...and as others have mentioned...it's not anything you did or didn't do. Hugs your way :goodvibes


Tracy

[minnie61650]

Hugs to you!

I would recommend the book The Out of Sync Child by Carol Kranowitz. It helped me understand sensory issues and gave me some practical things to do to help.

Best wishes!

Another good book is The Sensory-Sensitive Child by Karen A. Smith,Ph.D. and Karen R. Gouze,Ph.D.

It has "Practicle Solutions for Out-of-Bounds Behavior."

These books really have really helped me understand how hard basic things
such as getting dressed or sitting still are for these children.

[Florida_Mom]

Hi Nik's mom,

My DS8 has Sensory Integration Disorder. It affected him so that he couldn't touch paper. Can you imagine? He cringed doing his homework because he would have to touch paper and he couldn't hold a book to read it because he couldn't stand the feel of the paper. As you can imagine, this affected his ability to read, to learn, etc. He also couldn't stand the feel of socks. There are a list of other things, but those were the two biggies.

The OT at the school system didn't identify SID, but she mentioned sensory issues in passing at a meeting we had about my son, as in "he doesn't appear to have any sensory issues." Lightbulb!!!! Even though she denied it, I knew that was what it had to be. I started researching it like crazy. I read The Out of Sync Child and I did some research on the internet.

A friend at work recommended an OT for us to go to, since the school system seemed to be dragging their feet, and he has gone for about 9 months now. We started with Therapeutic Listening and then over the summer we started the brushing to desensitize the skin. We also got a trampoline at the house because the joint compressions from jumping are supposed to make the child's sensory issues better.

My son is doing so much better. He can touch paper, mostly and he will wear socks. He still doesn't like certain sounds (like a marker coloring on paper or chalk on a chalkboard).

DS loves going to OT because he thinks of it as play, and it is such a positive environment. The school system finally got with it and so now he has OT twice a week during the day, too.

Overall, it's been a learning curve, but there is hope. All the best.

[laurietg]

I know nothing about SID. I just wanted to let you know I am thinking about you and your family. It is so difficult to understand why people have to go through such things. You must be a very strong and loving person. :grouphug:

[mbb]

and tender advice...so I'm just going to add my "know how you're feeling, you're doing great mom stuff, here's a :hug:..it will, honestly, be all ok" ....for you:)

:sunny:

[patchchild]

*hugs*

There's a reason no one ever said that being a parent is easy. It's worth it though.

SID is so varied, it's hard to really know about it. It took me until I was in college and studies for my Special Education degree to figure out that SID was why I always cut the tags out of my shirts, refused to wear turtlenecks, couldn't stand fuzzy shirts, loved heavy blankets on the bed, .....

SID is something that you really learn to work with. It's amazing how so many small, often silly things can make a huge difference. For now though, it means that you as the parent have a lot of helping to do until your child can start figuring out what they need for themself.

I'm really glad that you have early intervention working with you. They can be such an amazing resource.

[LMC]

Start therapies ASAP! Make sure you get an OT who knows about SID. Most insurances don't cover sensory therapies but they can incorporate alot of SI therapy into OT. The sooner you start the therapies the better. My ds10 has had two rounds of therapies (suspended now due to insurance not covering it) and it does help. BUT, he still needs alot of help. From what I have been told horseback riding is the best therapy as it works on so many different areas all at one time. So since we have problems getting therapy coverage, we are going to build an arena and start horse therapy at home (already have horses).
The "Out of Sync Child" is a great book but I found it to be more of a diagnostic tool. Kranowitz has another book out that deals with "what to do now that you know you have a SI child" type stuff (I have not read this one).
Good luck I wish you success in overcoming these difficulties.

[Florida_Mom]

Start therapies ASAP! Make sure you get an OT who knows about SID. Most insurances don't cover sensory therapies but they can incorporate alot of SI therapy into OT. The sooner you start the therapies the better. My ds10 has had two rounds of therapies (suspended now due to insurance not covering it) and it does help. BUT, he still needs alot of help. From what I have been told horseback riding is the best therapy as it works on so many different areas all at one time. So since we have problems getting therapy coverage, we are going to build an arena and start horse therapy at home (already have horses).
The "Out of Sync Child" is a great book but I found it to be more of a diagnostic tool. Kranowitz has another book out that deals with "what to do now that you know you have a SI child" type stuff (I have not read this one).
Good luck I wish you success in overcoming these difficulties.


That is good information to have about horseback riding! Thanks for that one...I didn't know about that idea. We've also started playing raquetball with DS8 -- since it is so physical, that seems to help.

[LMC]

My DS10 can also now roller skate and ice skate. Now it aint much to write home about for your average kid but considering all he has had to overcome I am exstatic that he can now do this. He doesn't move very fast but that is not HIS objective; his objective is to not fall -- and he doesn't!!

He learned to ride a two wheeled bike this year too (thought I'd never see that) but his fear factor is so high that it's hard to get him to ride, but he can do it.

It is frustrating that I can't get him therapy right now. The state funded program that he was in has discontinued his services since his therapy referral didn't come thru their "clinic". It came from one of their top doctors but not thru a clinic visit, thru a private visit. So now none of the neurologist will see him in "clinic" since he is not CP, does not have seizures, and I can't tell ya why the basic "neurological disorder" doctor won't see him since we all know he has major issues and needs treatment!!

[Ambassador]

Florida Mom: has the Theraputic Listening helped significantly, to the point where you can assign improvement specifically to it? One of our Little Delegation has just begun Dynamic Listening for ADD/ SID. Thank you.

[Florida_Mom]

Florida Mom: has the Theraputic Listening helped significantly, to the point where you can assign improvement specifically to it? One of our Little Delegation has just begun Dynamic Listening for ADD/ SID. Thank you.

Hmmm....that's a good question. I know that when we *stopped* using it, some of his behaviors returned. But we saw the most dramatic improvement with the brushing. Now we just do both.

It is frustrating that I can't get him therapy right now. The state funded program that he was in has discontinued his services since his therapy referral didn't come thru their "clinic". It came from one of their top doctors but not thru a clinic visit, thru a private visit. So now none of the neurologist will see him in "clinic" since he is not CP, does not have seizures, and I can't tell ya why the basic "neurological disorder" doctor won't see him since we all know he has major issues and needs treatment!!

Maybe you can try this -- if he is in the public school system, they might be able to help. One thing I learned about a month ago (too late for us...but maybe it can help someone else) was that if the school decided he needed OT outside of the school setting as well as within it, that they would have to pay for it. He *definitely* needed it both in and out of school as the two different therapies were working on different things. Also, can you take it from an OT approach rather than a neurological one? Perhaps you can get the help your son needs that way? Just a thought...

[LMC]

[QUOTE=
Maybe you can try this -- if he is in the public school system, they might be able to help. One thing I learned about a month ago (too late for us...but maybe it can help someone else) was that if the school decided he needed OT outside of the school setting as well as within it, that they would have to pay for it. He *definitely* needed it both in and out of school as the two different therapies were working on different things. Also, can you take it from an OT approach rather than a neurological one? Perhaps you can get the help your son needs that way? Just a thought...[/QUOTE]

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.)

[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]

::MickeyMo 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