Sensory Integration Disorder - Lafayette,CA

Hi there! My son has been diagnosed with SPD. He had been through many evals through early intervention etc. Had some MRI's done. (He has really low muscle tone.) He was finally diagnosed through a place we have here in Denver called the STAR center (sensory therapies and research or something like that). We had done many many questionnaires through many different places. To be quite honest he had many traits that looked a lot like autism but he didnt quite fall into that category and never made the diagnostic criteria, even though he had a lot of red flags. He also did go to a child psychologist that confirmed he did not fall on the autism spectrum but agreed with sensory problems.

My sons symptoms were
Low muscle tone (not super common with SPD)
speech delays
motor coordination
poor fine and gross motor skills
low self help stuff

I didnt realize this until later but my sons sensory problems were movement. Alot of kids with sensory problems have problems with noise, texture, lights being too bright etc. I think my sons was a little less common and he was afraid of new types of movement. He didnt walk until he was 2 and I think it was a combination of the low muscle tone and being scared sh*tless of doing it on his own! There was definitely a time that I knew he could do it, he just wouldnt! He has come a long way, he will step up and down off of curbs with relative ease he is starting to run a little (he is almost 5 1/2). Bouncy castles are still pretty much of a nightmare for him though :)

Oh yeah, my son did see a PT for a long time, but I dont think they are probably really qualified to diagnose something like that. They may have an idea or lead you that way, but they couldnt make the final diagnosis.

My son get OT and ST through the school now and we also have a private speech therapist. We also have him in swimming and karate to keep his muscle tone up and to improve coordination.

Hope that helps! PM me if you have more questions!

I have found that most Psychologists don't believe in SPD. You will have better luck with an occupational therapist. Also check into anxiety. A lot of common SPing issues are really anxiety. Children have a high anxiety level so little things like tags, tight shoes, turtlenecks etc (that most can ignore) become hard to ignore for them (in their heightened anxious state) so they obsess over them.

Yes. Diagnosed through an OT who spent about 2 1/2 - 3 hours with her doing various types of tests. Overall, there were at least 4 different tests used to make the diagnsosis.

Occupational therapist, Mom. Find one who has experience in this. (Master's level study, btw.) Therapy includes "feeding" the child a sensory "diet". The OT makes it "fun".

Examples from my own child's experience: making him a "sandwich", wrapping him in a blanket and massaging him while having fun telling him "Here's the lettuce! Here's the tomato! Here's the mayo!" He was having fun and she never did more than he could stand.

My son couldn't swing, especially on a tire. She worked on that with her equipment. He couldn't lay on a large ball without a great deal of defensiveness. By the end of the therapy, he was doing great with that. She did a brushing and joint compression technique which I did at home. That's really important.

A lot of her diagnosis came from what he just could NOT tolerate. The thing we found was that it didn't actually show very much in her evaluation. His speech therapist recommended the eval, and when the OT finished the eval and said she didn't find much, the speech therapist asked her to give him a few sessions - that she was sure there was a real issue. Of course, the OT trusted the speech therapist's gut feelings, and after one session, which kind of blew me away, seeing what my son could not do or could not stand to do, she apologized to me for "missing" it. OT really helped my son, I have to say.

To answer your question about the symptoms that lead me to seek help, he had a lot of issues. Some I remember were that he would run into things on purpose, almost as if he wanted to "feel" something. Of course, it turned out that he DID... - a hallmark of SID. I used to laugh that a glass 10 feet from my son would always end up in the floor or broken. He couldn't tell how hard he was going to touch something. I knew that he had trouble swinging and that he couldn't stand for daddy to throw him up in the air, but it didn't make sense to me until I saw the OT work with him.

Some kids scream about how their clothes feel on them. My son didn't have that problem. SI presents in a lot of different ways with kids. If you haven't seen this book, you should get it - The Out of Sync Child.

Good luck with your child,
Dawn

My son has it - he is not quite 6 and in Kindergarten. He was diagnosed on the Autism Spectrum/mild-moderate in pre-school. He started getting help there.

When he started kinder, the school system was very proactive and we had an ARD meeting to asses his progress. He has sensory seeking issues - is ALWAYS looking for input. The OT and Speech Therapist thought this might be the case so they assessed him through classroom observation, because being in school, that was where the behaviour was happening and taking him out of the actual situation didn't make sense for the assessment.

I did some research (read The Out of Sync Child) and sent them an e-mail with my observations in case that was helpful.

The school noticed it, because home and school are SO different that kids are not necessarily as symptomatic in one place vs. the other.

The OT and teacher meet weekly for about 10 minutes, discuss what's going on for him, what's working or not, and tweak things. He is doing VERY well. They put a stretchy band - like a giant rubber band - on his chair legs so he can kick it as much as he wants. He gets the sensory input he needs without bugging others and is able to concentrate and listen better.

We knew when our daughter was 2 years old that she was different, but we couldn't get anyone to listen to us and had to forge on ahead by ourselves. Not even the pediatrician was interested in hearing what we had to say. When we finally told the pediatrician the diagnosis, it was like a lightbulb went off. But she never actually did anything about it/never dealt directly with it other than to make sure we were able to get our daughter in to see certain specialists and that our insurance would cover the cost/help.

Our daughter had continuous ear infections, colds, and got just about every childhood illness you can think of, some multiple times (things like hand-food-mouth disease, rosella, thrush--anything different that is not a childhood disease, she got). She was on continous antibiotics (which we know now actually contributed to the problems, as we found out that she (and I) have a genetic liver mutation with 3 mutations and no active alleles that doesn't allow our bodies to detox or metabolize correctly; she has chelated 3x.). She babbled all the time but no one could understand her; I was the only one who could piece together fragments of her disjointed speaking and put it together with what we were doing/her attitude/etc.

She had 3 ear tubes and her adenoids out by the age of 3. She had her tonsils out by the age of 7 (FULL of strep infection). She was very, very picky on food, had only a handful of things she'd eat (had issues with texture and taste/hated spices). Loud noises hurt her ears and lights hurt her eyes. She had issues with severe constipation that it took us years to resolve; now she uses CALM (magnesium) to help maintain regularity. She's also battled with urinary incontinence.

She was in day care from 6 weeks until 5 years old, when we took her out and I stayed home and opened my own business. When she was 7 years old, I switched the family over to organic food, got rid of MSG/aspartame/artificial flavors, took away processed and fast food, bought only grass-fed meat and eggs, took gluten, cow dairy/casein, and soy out of our food, and put in a reverse-osmosis water filtration system. THAT, more than anything else we've done (to include the chelating as well as adding vitamin and mineral supplements to her diet), made a tremendous difference in how she behaves.

She had speech through the school district from age 3 through 6th grade, went to Early Childhood at age 4, and had OT/PT from age 4 through 4th grade (they noticed she had issues with being able to do things in Early Childhood, so the school district tested her and discovered she has hypotonia). At the age of 3 she was diagnosed with Strabismus and far-sightedness and wears glasses. The Strabismus was fixed by using a special computer program game; no surgery. Hurray!

We got our "unofficial diagnosis" when she was 5 years old. I had pulled her out of day care in June when I became a stay-at-home mom; wow, all the issues she'd had from baby on--hitting herself, banging her head against the wall, saying she was stupid and dumb, saying she had no friends (this was a big one, from day care onward), crying for no reason, running away when she'd get in trouble (the fight or flight issue--she was all about flight. We still deal with this), lots of awful meltdown tantrums, pulling on her hair and screaming, AND the big one--not being able to be away from me--all hit BIG TIME when I started staying home with her. In order to get her to calm down, I'd give her a bear hug, where I'd sit behind her and literally wrap my arms around her body and hold her in a tight hold until she calmed down. She had issues with her clothes and how they felt on her; to this day, if she tries something on and it doesn't feel right/it's scratchy/it irritates her, I won't buy it because I know she won't wear it.

I literally had to be by her side or in the same room. I couldn't go to another room without her melting down. I couldn't go downstairs and leave her upstairs. It was like I had a leech permanently attached to me. It made it extremely difficult to do my research and get my freelance editorial business up and running. It made it hard to housebreak and welcome our new puppy into our home (if we'd known just how bad things were with our daughter, we would have waited a couple years on getting a dog).

The fall our daughter entered kindergarten, we had our unofficial diagnosis/answer. My husband had been sick at home for a day and finally, FINALLY, saw for himself what I'd been telling him all summer about how our daughter was behaving. I got her in to see a childhood specialist (pediatric psychotherapist) a month before she began school; after three visits, I asked the childhood specialist if my daughter had Sensory Processing Disorder or something along those lines (I'd been doing a bunch of my own research, trying to figure out what was wrong with her). The childhood specialist said that, off the books/records, yes, that was indeed what my daughter has and that she was on the very high-functioning end of the spectrum--her tantrums were from frustration at not being able to talk and tell us what she needed/wanted. She also has OCD and anxiety.

She has never been "offically diagnosed" with SPD because when she first went in for help, it wasn't on the books and therefore, it couldn't be used as a treatment code (they use OCD and anxiety when they treat her, but she gets "treated" for the SPD as well).

As far as school is concerned, she had speech and OT/PT issues/IEP. I alert her new teachers that she has sensory issues, otherwise, through lots of intense intervention on our part/helping her, our daughter is indistinguishable from anyone else--you wouldn't know she has an "issue." Unless you're home with her and see her have a breakdown because she held everything in during the day at school so that she was normal and fit in with her friends and classmates!

Besides the school district stuff, she has been to a pediatric wellness clinic as well as a private OT/PT person for some extra help. She still sees the childhood specialist, especially now that she's entering the teenage years, about once/month. I have done extensive research/reading on SPD and the Autism Spectrum and have used a lot of what I've learned in helping my daughter.

It also helps that she is an only child, as I can devote all my time to helping her.

My daughter is now 13 years old, in the 7th grade, she's made the honor roll 1st and 2nd quarter, she does not have any special intervention, loves to read, writes stories, plays the tenor sax in band, takes jazz dance (has since the age of 4), learned to ride a 2-wheel bike in July 2012 (difficult for her because it looked like she was looking down into the Grand Canyon when she'd sit on a bike. I had to enlist the help of a person working with the Madison City Parks and Recreation division who works with kids who have issues with learning to ride a bike. She is so proud of herself! We will be doing A LOT of bike riding this coming summer, so that she gets comfortable riding, she builds up endurance, and she gets exercise in.), loves music, is into doing/making artsy-crafty stuff, knits, and is building her little friendship group.

Friends--ah, the social relationship skills are the hardest for these kids. We have lots and lots and lots of talks about friends, who doesn't like who, that she has no friends, why does everyone need to be mean, why can't people live together in peace, why can't everyone like everyone, etc., etc.

I am so very, very proud of how well my daughter has turned out and marvel at how she keeps improving and at the beautiful, wonderful young woman she's turning out to be. Will she be able to handle a four-year college? We don't know. Will she be able to live on her own, or will she be living with us? We don't know. What I do know is that I will do my best to help her help herself as much as I am physically able. I have confidence that she will be able to do a lot more than it currently seems she'll be able to do, solely based on how far she's come since she was a baby. She is miles and miles away from the person she once used to be.

And I'm very proud of her.

There are sensory integration difficulties and then there is the disorder. You have to have some serious symptoms that inhibit normal life to be diagnosed with the disorder. My son had difficulties as a young child and got both Occupational Therapy and Speech Therapy. Now at 4, the only things remaining are his nervousness with water in his face (refuses swim lessons, showers, and water parks) and food pickiness (smell, look, taste ect can be revolting to him). SPD presents itself differently in everyone and it is often tied to anxiety. I would first start with a neurodevelopmental pediatrician who can do a thorough test and see really what is going on.

If you're still wondering whether Sensory Integration is an issue for your child, here's a comprehensive site with checklists for you to self-evaluate first: http://www.sensory-processing-disorder.com/sensory-proces...

Depending on your child's age, you can get some help from Early Intervention for birth-3, your doctor will probably have your local contact info. If your child is over 3, check with your school district about an early childhood or preschool program. Most districts will have pre-school screenings and you can possibly get some help. They offer OT, PT, speech and educational support. I work as a PT in the schools, and a large percentage of my case load are 3-5 year old students. If your child does have needs, they will put a plan in place that will then follow them into kindergarten (and further) if they need continued support to be successful in school. Good luck.