Sensory Integration Disorder

[jmskinner]

When I first posted to this thread my DS was 7, he is now 13. Doing much better in school and every day life, but socially is having problems. We had been back and forth about Aspergers and when we moved to VA over the Summer the pediatrician recommended pursuing it further. Then when we saw the new child pschiatrist for his ADHD, she also recommended he pursue it. We finally got the diagnosis from the developmental pediatrician on Friday. Just looking at the testing the school has done told her he was, but she still had us do the questionnaire and there was no doubt he has Asperger's.

He would rather be in the house, by himself, than out with other kids. The kids he gets along with are usually 5-6 years younger than him. He still likes toys which makes his Dad crazy. But, I still see college age guys checking out Transformers and grown men playing with Legos, so he can too.

Loud noises still bother him to this day, but he loves Monster Truck shows as long as he has the noise protecting ear muffs.

Still a picky eater. This isn't just to taste. He only eats chicken nuggets and mac&cheese, but is even picky as to which type he will eat. If a chicken nugget looks different or the breading has come off, he won't eat it. Doesn't like cake, but will eat the frosting some times.

He was previously seen for OT, PT, and ST, but they said it wasn't necessary after this summer due to meeting all of his goals. I am going to research some OT for socialization, or maybe just find a group to join.

It does get better, at 3 & 4, I wouldn't take him shopping with me. Now I will and have a great time, or he is showing enough maturity that I do leave him alone at home, but only for a couple of hours at the most.

Hope everyone else's children are doing well and the parents too!

 

[rt2dz]

Sensory Processing Disorder (SPD) and Sensory Integration Disorder (SID) are the exact same thing. I do believe that it is going into the next DSM as Sensory Integration Disorder.

I have two kiddos with it. DS#3 was first diagnosed. When I was asked questions, I would say he didn't have food issues--who should see DS#2. Well, what we discovered is DS#2 has SPD (our official diagnosis) too. It's just DS#3 has a lot more going on. DS#3 is also on the autism spectrum. Neither were deprived of oxygen. 80% of ASD have some form of SPD, but not all kids with SPD are ASD.

There are several areas of SPD. DS#2 is hypersensitive to taste and smell. That's about it. He has tended to have "grown into" his issues. We've all learned to deal with it and it isn't a big deal. DS#3 has a combination of hyper- and hypo- sensitivities, depending on the sense. It is a never-ending issue because of all his other issues (including lack of social language).

It gets easier though. As DS#3 language gets better, as we understand more of what is an issue on in what way, as lifestyle adjustments happen, as they learn self-soothing techniques...

 

[Nicole&Becker]

Both my boys have this. It has similarities to Autism because people with Autism usually also have SID. There are lots of great books out on it. I would suggest getting noise canceling headphones for him. Look into sensory toys on Amazon. They are great for helping to keep you calm. Getting a stroller for him to use at Disney and using a light blanket that can be put over it to give him a safe place when he has had too much stimulation.

Your nephew is a Sensory Avoider. Too much sensory input overloads his system. White noise and darkness can really help. As far as the violence, he needs to learn to control himself and also how he can help himself when things get to be too much. His mom should look into getting him an Occupational Therapist. They can help teach her what techniques there are to help him calm down and also how to recognize the warning signs to a meltdown so you can avoid them by heading them off.

It is totally manageable and you may find out some things about yourself and his mom might found some things that could help her in times of stress too. I hope that helps! Good luck!

 

[Nicole&Becker]

My son who has the most sensory issues had horrific reflux as an infant. He could only tolerate my milk until he was almost a year old. Even pumping and adding a teaspoon of rice cereal would cause the most amazing projectile vomit. It was a fun year, as I got pregnant with his baby brother when he was 5 months old, so I nursed through the entire pregnancy, with the Ped telling me it was the only option and the OB telling me I had to stop.

Very interesting...

Both my boys, and even my daughter are not tolerant at all to dairy. My daughter (almost a year now) can now tolerate some dairy like cheese, but nothing else. My boys are both very sensitive to dairy. Neither of them could have any dairy at all as infants or they would scream from the gas, break out in a rash, and throw up. I could not even have dairy myself because just the hints of it in my milk would send them off too. My daughter is not picky really but we have to be careful with dairy with her too. My oldest who is now 7 years old is vegan (by his own choice). He won't eat meat and hasn't since he was about 18 months old. Add that with his dairy intolerance, he is vegan. My 5 year old son has issues with textures of foods. He does not like things that are too crunchy or hard. He is getting better through slowly working with him on it. He used to throw up any time he ate something with a weird texture or taste. He would also throw up when upset and still sometimes does.

I never really did formula with my kids so they did not get diagnosed with reflux, but they did have food sensitivities. Interesting that it is so common.

 

[SueM in MN]

When I first posted to this thread my DS was 7, he is now 13. Doing much better in school and every day life, but socially is having problems. We had been back and forth about Aspergers and when we moved to VA over the Summer the pediatrician recommended pursuing it further. Then when we saw the new child pschiatrist for his ADHD, she also recommended he pursue it. We finally got the diagnosis from the developmental pediatrician on Friday. Just looking at the testing the school has done told her he was, but she still had us do the questionnaire and there was no doubt he has Asperger's.

He would rather be in the house, by himself, than out with other kids. The kids he gets along with are usually 5-6 years younger than him. He still likes toys which makes his Dad crazy. But, I still see college age guys checking out Transformers and grown men playing with Legos, so he can too.

Loud noises still bother him to this day, but he loves Monster Truck shows as long as he has the noise protecting ear muffs.

Still a picky eater. This isn't just to taste. He only eats chicken nuggets and mac&cheese, but is even picky as to which type he will eat. If a chicken nugget looks different or the breading has come off, he won't eat it. Doesn't like cake, but will eat the frosting some times.

He was previously seen for OT, PT, and ST, but they said it wasn't necessary after this summer due to meeting all of his goals. I am going to research some OT for socialization, or maybe just find a group to join.

It does get better, at 3 & 4, I wouldn't take him shopping with me. Now I will and have a great time, or he is showing enough maturity that I do leave him alone at home, but only for a couple of hours at the most.

Hope everyone else's children are doing well and the parents too!

Interestingly, my adult niece recently took a questionnaire for Aspergers. She was somewhat surprised and had posted her results on Facebook. No one who knew her was surprised at all - she has a lot of little ‘quirks’ that most of us who knew anything about Aspergers had figured that was the cause of her quirks.
She is a very successful adult with a Masters degree in Nursing.

 

[herdtoDisney]

Interesting how so many of our kids' had tramautic births! My 15 yo DS had 'cord compression' during birth and was quite blue and not breathing when born-it was so scary as you know! He has ADHD and SPD and while he does not have an autism diagnosis, is considered (by the autism eval docs) to have 'autistic features'. I have four other kids who did not have tramautic births and do not have any issues.

Most of those and a lot of the SPD has 'faded' as ds has gotten older, so there is hope for you guys' little ones, it gets easier! Now it's the ADHD that is making life and school so difficult But the 4 year old freakouts over food and clothes are a distant memory

 

[Qannie]

Hi, I read your post about your nephew who was diagnosed with sensory issues. My son, whom is now 7 was diagnosed with sensory issues at age four as well. The wonderful news is that there is a lot you can do. At age four, my son was having issues with loud sounds, clothing, impulse control, aggression....he went through sensory therapy and the results have been astounding. I have a blog.. qannie47.blogspot.com where I have shared many personal experiences in regards to learning about sensory issues. I hope you visit it. I wrote it for moms/dads/anybody touched by this disorder. My son is a success story...it has taken a lot of hard work, but worth it. Qannie

 

[Qannie]

Hi, I have a son whom is now 7 and was diagnosed with sensory issues at age four.The wonderful news is that there is alot you can do and my son, thru allot of hard work is doing great!!! He was experienceing problems with emotional control, aggression, loud noices, dressing issues...and after sensory integration therapy his world is a more sensory balanced place. I encourage you to visit my blog: qannie47.blogspot.com. I created it for anybody who has encountered these challenges. I have shared much received advice, hands-on triumps as well as lessons well learned. Please visit me..my hope is that my experiences can help others. Qannie

 

[donaldandpirates]

One of mine has it, too - Sensory Integration Disorder or SID. They treat it, typically, with occupational therapy. It can be a symptom of autism, but it doesn't necessarily mean that a child with SID has autism, if that makes sense?

What I wanted to throw in here is some rides that did or would have really upset my child. We plan one-on-one time during those attractions and get a face painting or special snack.
Animal Kingdom:
Dinosaur
It's Tough To Be A Bug (hysterics - won't go into shows at all now)
(Festival of the Lion King was amazing to our kiddo - nothing too loud there, but the colors and waving streams were captivating. Some rides just weren't "safe" for a child that age, so we skipped things like the safari and really jerky/bumpy rides)

MGM
Muppets Vision 3D (shaking in fear - really horrifying)
Sounds Dangerous (haven't done it, but won't)
Star Tours, Rock N Rollercoaster, Tower of Terror - the obvious ones that aren't 'safe' for a small child.
(Fantasmic was surprisingly not too scary - I think it was far enough away that it didn't get too loud or overwhelming, same with Indiana Jones. The Little Mermaid was overwhelming when Ursula comes out and the whole theater gets cold/misty, swirls, and her face appears everywhere, laughing maniacally. We know it's coming now, so it isn't too scary - but it might be too much for an unsuspecting 4 year old).

Epcot
Obvious unsafe/jerky rides (Body Wars, Mission Space, Soarin, Test Track)
Honey, I shrunk the audience (another that was SO sensory involved that it was horrifying and took time to calm down)
Journey Into Imagination with Figment
O Canada

Magic Kingdom
Buzz Lightyear
Tiki Room
Haunted Mansion
PhilharMagic (awful, awful, awful for our kiddo)
Peter Pan's Flight (too turny, sensation of flying wasn't fun)
Pirates of the Caribbean (I think it was the smells and sights all around)
Stitch's Escape (wouldn't do - won't do)
Snow White (just generally scary)

It was so interesting reading your post. My DS (ASD and SID) could not tolerate getting his face painted, and a lot of the attractions you listed were ones that there is no way he could handle. However, he LOVED Philharmagic!!! He called it the Donald hat movie, and it was his favorite out of everything else on our trip this fall. We did sit in the very back of the theater, no 3-D glasses (he couldn't stand them on his face), and it was great! He also really liked Star Tours (again - no 3-D glasses).
It's amazing how different kids can be with SID.

 

[DVCJones]

My oldest was diagnosed at 7 with a very mild case. She can function almost normally. Most people would never know. Only people who spend a lot of time with her can pick up on it now. She is almost 10.

She was in an Early Intervention program at 8 mos - 3 years for physical therapy after surgery for cancer. They picked up on some sensory issues at that time and worked on them. I really believe that early therapy is why her SID is so mild today.

Over the years my DD exhibited classic SID behavior. It has gotten better. Loud noises were a problem... Only would wear 'comfy' clothes. She still prefers them but will wear jeans and leggings w/ dresses now. She even had trouble with food texture. It got really bad when she refused to swallow any food she chewed too much. Today, when she gets overly excited about something that makes her happy she does thing with her hands and face where she tightens up. It is hard to explain... She has always done this.

She was never diagnosed with any form of autism. Today she has many friends and does not have the awkward social piece. I have worked with her on that for years!!! When she was young, (and now too) I would practice behavior scenarios with her. SID kids need a lot of time on teaching appropriate response and desensitizing.

I am really happy with the progress she has made over the years. It was hard work in that I was always thinking of ways I could help her and trying different things. She is an overly happy, sensitive and caring child and always is smiling. Her teachers just love her.

 

[kirstenb1]

Whenever our 7 yr old is very excited, her whole torso trembles and she brings her hands up to her cheeks and presses very hard against her face. When you said something about your dd and her hands/face, it reminded me. Dd's occupational therapists said they've never really seen other kids doing it. Our dd was in EI physical therapy very early too, at 7 mths. She's always had low muscle tone, and over the years has had challenges with motor skills.

My oldest was diagnosed at 7 with a very mild case. She can function almost normally. Most people would never know. Only people who spend a lot of time with her can pick up on it now. She is almost 10.

She was in an Early Intervention program at 8 mos - 3 years for physical therapy after surgery for cancer. They picked up on some sensory issues at that time and worked on them. I really believe that early therapy is why her SID is so mild today.

Over the years my DD exhibited classic SID behavior. It has gotten better. Loud noises were a problem... Only would wear 'comfy' clothes. She still prefers them but will wear jeans and leggings w/ dresses now. She even had trouble with food texture. It got really bad when she refused to swallow any food she chewed too much. Today, when she gets overly excited about something that makes her happy she does thing with her hands and face where she tightens up. It is hard to explain... She has always done this.

She was never diagnosed with any form of autism. Today she has many friends and does not have the awkward social piece. I have worked with her on that for years!!! When she was young, (and now too) I would practice behavior scenarios with her. SID kids need a lot of time on teaching appropriate response and desensitizing.

I am really happy with the progress she has made over the years. It was hard work in that I was always thinking of ways I could help her and trying different things. She is an overly happy, sensitive and caring child and always is smiling. Her teachers just love her.

 

[DVCJones]

Whenever our 7 yr old is very excited, her whole torso trembles and she brings her hands up to her cheeks and presses very hard against her face. When you said something about your dd and her hands/face, it reminded me. Dd's occupational therapists said they've never really seen other kids doing it. Our dd was in EI physical therapy very early too, at 7 mths. She's always had low muscle tone, and over the years has had challenges with motor skills.

Your DD sounds a lot like my DD. My DD clenches her hands together (like she is experiencing a sensory overload) and was also a low muscle tone baby. We never really knew what came first. The low muscle tone or the setback from being so sick and her surgery which caused nerve damage down her left side. Who knows....

They told me years ago that she grow out of most of it. And she has! I wonder if she will ever grow out of the clenching thing. She tells me she is aware of it and can't help it. She explained that she can't stop it from happening, but can end it once it started. In her words, 'I can shut it off after it starts, but I can't stop it from happening'. If kids catch her doing it at school or ask her what she is doing, she either tells them she is cold or sometimes she tells the truth and tells them she is excited.

 

[jlr9882]

Thanks for all the information. I googled "sensory integration disorder" so I think I am starting to understand it a lot better. Just today my nephew was at my house and he and my daughter (6 yrs. old) were making chocolate chip cookies with my sister and I. Everything was going well and then all of a sudden my nephew starting freaking out saying "please don't put anything yucky in them!" meaning the chocolate chips. He will only eat very smooth foods. He won't eat vanilla ice cream if it has any hint of vanilla bean with the little black dots and my sister has pretty much given up getting him to eat hard foods.

Are speech problems generally associated with this disorder? My nephew talks really strange. He doesn't use any contractions and his speech is very broken, he sounds almost robotic. He has a 2 year old brother who talks WAY better than him and I think my DD6 was more advanced in speech than him when she was 4.

I am not sure if this was mentioned or not, but what about an eval for feeding therapy? My son gets it thru a speech therapist at a clinic, but I know some that also get it thru OT. If he isn't already involved in the school district, give them a call too for an eval to see what services he may qualify for there or even getting into a preschool class.