New member interested in learning more about sensory integration disorder...
Moms View Message Board: Parenting Children with Special Needs: New member interested in learning more about sensory integration disorder...
Hello Everyone,
I am a new member. I am hoping I can learn a lot from the members on this board and find some support along the way too.
My husband and I think that our 3 yr. old son is showing characteristics of sensory intergration disorder. His behavior is becoming more odd and frustrating as he gets older. We thought that the 'odd' behaviors he had when he was younger would be something he would grow out of.
Can someone point me in the right direction to go for help for our son? We hope to have health insurance again in the near future.
--Cyndi mom to 3 boys(4,3,2 y/o) and 1 girl(5 mo.)
Hi Cyndi! I'm not familiar with sensory integration disorder, but there are some members here who are. You said you don't have insurance now, your state should have a program to cover children who are uninsured, you should be able to google it. Good luck, and welcome!
Cindi, my almost seven year old grandson was officially diagnosed with sensory integrative disorder three years ago. Here in North Carolina there is a big push for early intervention, and we were able to get him evaluated by a multi-disciplinary team without any cost to his parents. As a result, he started to attend pre-school in a public school setting, also at no cost. He is now in the first grade, and overall is doing well. I have no idea what kinds of services are available in Texas, but perhaps there are other members on here who might know. I am interested in learning more about your son, especially in regard to what behaviors he is exhibiting that make you think he may have SID.
Since you live in TX, I know Early Childhood Intervention handles free evaluations in children under 3. We had our son evaluated for speech delay, the program is wonderful, though our DS didn't need ongoing therapy. Since you DS is 3, you should call them and ask who would evaluate him now, I am sure they will give you information. Also, here's the link to Chips program for uninsured TX children. Chip I HTH! BTW, I'm near Ft. Hood, TX, how about you?
Ask you pediatrician for the number to early intervention and get a free evaluation for you child. (treatment is free too.)
My ds has high-functioning autism and some sensory issues that go along with that diagnosis. As others have said, your pediatrician should be able to direct you to the correct services. I believe every state has some sort of Early Intervention program now. Best of luck! Please let us know of any ways we can help.
Hi Cyndi,
My son was diagnosed at age 3- he is now almost 5. We did 1 year of weekly OT sessions and a "sensory-diet" regimen, which helped tremendously. My son started as a sudden stuttoring and quickly progressed to horrible behavior/aggressiveness at preschool. He also tends to constantly crash into furniture and act really "wild" sometimes. When we took him to a speech therapist, she noticed signs of the Sensory D/O and referred us. Wow, what a blessing - it answered so many questions that we were taking soooo personally as parents.
We are doing better - not perfect, but now it is hard to tell the difference in sensory vs being a boy vs discipline issues.
My son now has very strange issues with sensory - my husband took him to Cicci'c Pizza for "Pizza with Pop's" day at school. When they went to make a pizza, Austin began acting horribly and crying. By taking him to every OT appt, I knew that he literally gags when putting his hands in dough. The OT really believes he misbehaves to get out of activities that are hard or overwhelming. I can tell now when he needs to go to the park to spin and swing. Working in the yard, where he has to push/pull heavy things also really helps.
Just a few resources for you...
--You can search on this website for previous conversations (but I found most were in relation to autism)or you can get alot of info by doing a google search.
--You probably have heard, but the book "The Out-of-Sync" child is good - although I found it did not relate totally to my son, I have talked to others that say it exactly descibes their child.
--I am also from NC and did not know this until after a year of insurance co-pays, but after the age of 3 - our school system must evaluate and provide services to all children in need. I had Austin evaluated and after the year of OT, he did not qualify for their services because his IQ and potential for success in school was too high (thank God, I guess). But, it was a great thing. The people were WONDERFUL and extremely helpful. In our circumstance, they sent an OT, speech therapist, and the director of developmental services to his preschool to observe for the day. The eval was extremely thorough, including a psychologist eval. He also now has a record on file, so if I ever need Speech or OT again - I can just call for another eval. Check into this in your area. It was through the Programs for Execptional Children dept.
Hope this helps - you are welcomed to email me if you have further questions.....
Hi Everyone,
I posted a list yesterday of some of the characteristics that our son displays that makes me lean toward Sensory Intergration Disorder...for some reason it didn't post. I may have been to distracted by the kids to notice at the time what happened.
Here are some of the things he does:
-does not adapt well to change (especially in social situations) and has uncontrollable shrieking/crying meltdowns
-when he is upset he wrings and twists his hands together
-does not like loud sounds (cries and covers ears with his hands) even if something is a 'normal' volume to everyone in the house; he startles very easily
-he is very clumsy, trips easily, and has poor balance; does not even try to catch himself or brace himself when he falls
-plays with his food because of the texture I suppose
-freaks out if rain drops or snow touch him (especially in the face) although he seems to have eased up about this a little
-has a hard time understanding personal space
-gets very anxious and upset in group situations (ie. Sunday school or music class for preschoolers -only him, his brother, and one boy he has known since infancy is in the class)
-refuses to participate in group activities or follow along with interactive games (ie. duck duck goose, hokey pokey) but will sing the songs and imitate the actions at home
-he does much better in a one on one setting and tends to gravitate toward teenagers and adults rather than other kids
-he will not play with other kids (except his siblings);he just watches or purposely moves as far away from them as he can get
-he is very very loving but he is also very emotional; he is either really happy or really upset, sad, etc. ... there doesn't seem to be a middle ground...doesn't have much internal control for his emotions
-he was a late walker and talker
-his speech had improved but now it is declining and his harder to understand (even getting harder for me to understand and I am with him all day every day); also for as long as I can remember his voice has had a 'sing-songy'/whiney sound to it even though we have consistantly worked with him to 'talk like a big boy';all the kids have learned sign language as babies, so that helped a great deal when he was pre-verbal
-walks on the tips of his toes; he doesn't seem to realize he is doing it unless I say something to him
-lately if he thinks something is to hard to do or just doesn't want to do something he has been acting up so its sometimes hard to tell when he is acting up just to get out of something and when his behavior is the result of some sensory issue
He is a wonderful little boy with a great big heart, loves learning, and has a very long attention span he just has some odd behaviors and responses to things and people around him that are just not quite 'right' and I really want to keep helping him so that he learns to adjust and does not 'shut down' emotionally, etc.
If you've read this far...thank you. I am hoping to find support and learn more about SID (and other special needs - BTW I have mild cerebral palsy - so any special needs topics are interesting to me) I am planning to go into special education when my kids are a little older.
I am looking forward getting to know you all better.
--Cyndi
Hi, I'm also new to the board, I have a 5 year old SID child. We live in the Houston area and this is what we did to get her DX and therapy.
1) After we decided that we needed help we went to our Pediatrician, he sent us to a local Speech Path.
2) At the speech path my daughter had a hearing test and eye test and then we evaluated for speech ( she has a stutter and some delays).
3) We then had her evaluated by the Speech Path's in house OT. She was diagnosed within 5 minutes. Once I told her that Emma, that's my DD's name, will not eat a single fruit or vegetable, she said "OK! You're in!"
4) We started therapy last September. And we're getting close to the end! YAY! Then we start her Speech therapy. We decided to do each therapy separately so that we could really focus on each.
So that's what we did. My husband has great insurance and so we have a small co-pay for the OT every week. It's been an amazing journey, I must say. There are things that I know now that I never dreamed that I'd *EVER* know. I feel like I'm almost qualified to be an OT.
Anyway, I hope you get the help you need. What is your son's name? Best of luck to you all.
Kerri
Sounds to me like you definitely need an evaluation. I would start at the Pediatrician and see what resources your community has - although, I feel like I had to educate most of the MD's/teachers I came in contact with - I think alot of the information is really new, but is begining to be disbursed. Other than the school system, our community had very little resources. There was a week summer SID camp in the next big town, but was pricey.... Last year, there was also a SID conference that traveled across the country for parents, teachers, OT's, etc . It was about $350, and there was no deduction for parents (which I thought really stunk!!) Most teachers and healthcare professionals have education accts that pay for these things.
Since you do not have insurance right now - and the OT rate is really high ($350.00 for the eval and $120.00/session for mine)you may want to investigate yourself. I would definitely read the Out-of Sync Child. If this seems to fit, the book has examples of the "Sensory-diet" you can try. This was the basis for the beginning of the OT treatment and our home plan. We did it every 2-4 hours at first. Now it is only as needed. We did the brushing exercise (the brush was only $7), the rubbing/massaging exercise, and then chose 2 physical activities. It was anything from stringing beads, playing with therapy putty (we would hide objects in the putty to find), cutting with scissors, etc. You can also invest in play equipment that can help ie: swings, trampolines, etc. I know there is adaptive equipment websites out there, but they may be expensive. We did alot of swinging in rope swings and at the same time pulling up with a rope. Tire swings are also good for the spinning sensation. My son also loves to play on my exercise ball - he rolls back and forth on his belly. My OT said that playing using the cushions from the couch really helps-jumping on them, crawling under them, or laying under them. (We did this when DH was at work!) We also would play "hot dog" and "taco", where I would roll him tightly in a blanket and the squeeze and push on him - this is a fun one you can play with - adding Mustard, Ketchup, etc. We would also set up obstacle courses in the house (it is important that you decide on the activities and it is structured - because it can become wild) where he would crawl under a table, jump 10 times, string 4 beads, jump on the couch cushion, and the run to me - then repeat - you get the idea. My son also responds very well to yard work, the pulling and carrying of heavy things really helps him center himself.
Oh, another idea, our OT bought a cheap toddler size fishing vest and put weights in it. This is really good at centering them while trying to sit and work. This really tired Austin out and he did not like it, but she said some kids have alot of success wearing them at school.
Hope some of these ideas will help-can't hurt...
I just really hope you can find a resource to help you through all of this. For us, the whole diagnosis and treatment was very abstract and took a long time to grasp and appreciate. I can say, however, that it really worked!!!!
Good luck!
Kerri123,
I am new here. I also live in the Houston area.
My 2 year old son has been "sort of" diagnosed with PDD. What I mean by "sort of" is that we have seen a psychologist for 1 hour and he thinks it is PDD. He referred me to a specialist who does the testing and evaluation. Her first available appt.was on April 19th. So, he has not officially be diagnosed but from what I have been reading, it seems that the psychologist may be correct.
He turned 2 on January 5 and he only speaks about 10 words. He also has social problems, such as hitting his friends at school for no apparent reason. He is not provoked and he is not angry when he hits them.
Anyway, when I read that you were from Houston, I thought I would inquire about what doctors, specialists, therapists, you have seen.
Thanks!
Kim
I just don't really know what to do or where to go other than what I am doing.
You can have tons of symptoms but not have pdd. you need the test. Very subjective test I might add.
They though ds might have pdd. (No according to test.) Then they thought he have processing disorder.( no according to test)...
They are always accusing him of something. We are going to get him tested for aspergers just to shut the buggers up....
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