Sensory Processing Disorder

Updated on December 24, 2007
K.C. asks from Phoenix, AZ
10 answers

Are there any other moms out there who have little ones with sensory processing problems? We're waiting to see the developmental pediatrician, but won't get in until Feb. because they're so booked. Contact with any other moms who can understand what we're going through would be huge right now.
THANKS!

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C.K.

answers from Denver on

Hi! I recommend the books The Out of Sync Child and The Out of Sync Child Has Fun by Carol Stock Kranowitz. I am an ECSE who has worked with many children with sensory processing issues. What county do you live in? I also know of a few amazing pediatric Occupational Therapists who specialize in sensory processing disorders. Are you hooked up with services yet?

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K.N.

answers from Denver on

I have three children with my two boys, the youngest and the oldest, with SPD. It seems awfully long to see a pediatrician until February. I know firsthand with the difference between my oldest and youngest, the sooner you get things identified and therapy begins, the more malleable they are and faster to achieve success.

In Goodyear, AZ there is a well-respected OT in the SPD realm named Diana Henry and you can learn more about her at her website henryot.com. I went to the SPD conference last April and she spoke to the group---she's doing some really great things all over the country.

Another place to get info is kidfoundation.org and starcenter.us (STAR Center is currently where my sons go---Lucy Jane Miller is the foremost authority on this subject and she studied under Jean Ayres, the pioneer for this whole school of thought with SPD. Look for a cover story in TIME magazine within the next few months highlighting her work and the work of the STAR Center.) As I sit waiting for my sons to receive their therapy, I meet many, many mothers/families from all over the country. I don't know if you'd consider coming to the Denver metro area or not for evaluation and therapy but just thought I'd let you know many do come from all over.

As far as me being a mom who understands what you are going through right now, I am not sure if I will hit this on the head or not because there are so many factors to consider---could you be more specific?

With your background in SpEd I am expecting you have some familiarity with this. My pediatrician has been involved through this whole process but it has been the work of the OTs that have done the detective work with the evaluation and the treatment. It has been my experience in speaking with some parents that their physicians do not identify with SPD because it is not on the DSM (Diagnostic and Statistical Manual)---roughly the same place where childhood depression and ADHD started out, oddly enough.

I've blabbed on enough. I am not really sure I have helped but please feel free to contact me personally for more info. I am very passionate about this and would provide any help I can.

K

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L.H.

answers from Grand Junction on

Dear K.,

My youngest (5 yrs) has Sensory Processing Disorder, also called Sensory Integration. He was diagnosed @ Children's Hosp. almost a year ago this Feb. His team @ Children's included an OT, a Psychologist and a Developmental Pediatrician. The Psychologist was the team leader. I hope that you can get the help you need. I am here to talk to you about it. It has been h*** o* the emotional and behavior side the most. The fine motor and speech are coming right along. I am reading a ton of books on SPD and I would recommend getting some yourself if you believe your child might have sensory issues. When I started reading The Out of Sync Child light bulbs starting going off for me. How old is your little one? I started my process with our school district in a program called KidsFirst also sometimes called ChildFind....when my son was 3 yrs. old. It turns out that the KidsFirst coordinator suspected that my son had sensory issues, and gave me some excerpts to read from The Out of Sync Child. Anyway, the most important thing to know about sensory issues is that it is on a spectrum similar to Autism, but it is not Autism, my son does not have Autism. But, 75% of autistic children have SPD. I hope that this has helped, and please write me with any specific questions. Take care,
L. W.

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T.

answers from Las Vegas on

K.,

My 4 year old son has autism and sensory processing disorder. A great resource is the book "Out of Sync Child." What do you need to know? I'd be happy to help. If you are just looking for some community and support, I'd be happy to help you there too. ____@____.com

T.

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R.Y.

answers from Denver on

Dear K., Please watch the 12-minute video at www.mineralstory.com and let me know if the Kid's Toddy, which is specially formulated for children, and has vitamins, amino acids and MINERALS might be the answer for your daughter. If you would like more info, please call me at ###-###-####. Happy Holiday, R.

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C.W.

answers from Denver on

YES YES YES!
I was there with my son when he was 3... His diagnoses was an answer to prayer. After 2 years of Therapy he just blossomed. Now 11 you would never know he has sensory Integration Dysfunction.

We had a long waiting list too - I am going to recommend a book for you to read in the process that really helped us.

http://www.out-of-sync-child.com/

http://www.amazon.com/exec/obidos/ASIN/0399531653/comeuni...

The book was and still is amazing.. Identified with our son perfectly. It helped us understand what he was going through and how we could help in our home to make his life better. There is a fun book too that has alot of activities in it..

Hope this helps.. Early detection is key so follow through because with the proper treatment - your child will learn how to embrace their sensory processing and succeed in life...

Blessings,
C.

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J.L.

answers from Austin on

Hi,
It looks like everyone here has given you the same advice I was thinking. I have a 13 year old with major SPD. He also has CHARGE Syndrome. SPD also goes along with ADD in my 10 year old son, too. Both boys have different issues and are on the opposite ends of the spectrum, but it is not a pediatrician you need other than to refer you to a good OT with sensory training (not all OT's have this training). Hippotherapy worked extremely well for my son.

Good luck. The behaviors are very different and can be hard to handle. My 13 year old displays self-injurious behaviors because he craves sensory input so badly that he will do anything to get it. With my other son, the problem is that some sensory input he receives is just too much for him to handle sometimes. Opposites.

If you would like to talk, I am available. It always helps to have someone who really understands what you are going through to run things by.

Good luck,
J.
Albuquerque, New Mexico
###-###-####

www.livetotalwellness.com/janislanz

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L.M.

answers from Phoenix on

My 3yo has mild autism -mainly speech delay and sensory issues. He couldn't gum food as a baby and yet still has difficulty ripping food/chewing down on food to break it apart..everything still has to be cut up for him..or just plain lazy and manipulating.

Anyway, he is sensitive to cold - icecream, popsicles, etc. Yet no problem with milk and juices. Wouldn't drink water for the life of him except now he's drinking it at preschool and doesn't fuss about it.

He had a texture and color issue with foods. He wouldn't eat anything white, orange or green - rice/mashed potatoes, carrots, sweet potatoes, green beans, green peas, etc because he ate a lot of those veggies as a baby..mainly ate Gerber, Beechnut, etc..refused to eat homemade baby food. I didn't really think texture wise at first because I thought it was a flavor thing. He likes spicy and bold taste, lots of sauce..figured it was a European thing because my husband's from Belgium..French ancestry. I'm Chinese..Cantonese and we eat pretty mild food.

Anyway, he is seeing a Speech Therapist, Occupational Therapist and Music Therapist. According to his new OT, she said they have to refer Feeding Therapy for the sensory issues to the DDD Support Coordinator in order to get it authorized otherwise we cannot get it for him freehand. So, good luck seeing a Developmental Ped. We requested paperwork in June and sent it out in Sept because waiting on other therapy stuff, and we'll finally get a NP appt in Feb and then who knows to see a developmental ped.

In fact, you can mention this to his regular pediatrician, find out if they can do a referral to a feeding therapist /occupational therapist and you can get that set up.

If you need help, let me know and I can refer you.

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L.R.

answers from Tucson on

Hi K.

I have a son who is 4 who has sensory processing disorder (SPD). I am an Occupational Therapist, and I also have SPD, so I am very familiar with it from a variety of angles.

I started to suspect something with him when he was less than a year old, but things seemed to get better for awhile. When he was 2 he had major issues with motions, and with things like changing his clothing. I think it was then that I started really trying to get him evaluated.

It took me a year to get him an appointment for a Sensory Integration (SI) evaluation at a clinic. So when he was 3 he started going for SI therapy.

He has been going to therapy now for a year and it has really helped him, although we still have more to do. It's not easy, but it does get better.

I'm not sure what exactly your child's story is, but feel free to contact me if you'd like.

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P.M.

answers from Boston on

K.,

My son was diagnosed with SPD almost a year ago. Although he was mild compared to many others I read about, I was absolutely amazed at how much OT helped him... so much so quickly! I was very fortunate to be able to get him into his first OT appt within a month of being diagnosed. I was simply overcome with pure joy & amazement when I saw how relaxed and relieved he became with his first brushing. I hadn't seem him that calm in many many months. When I read The Out of Sync Child, I just cried at the end of the Intro. Finally, I understood just a little bit of what was going on. It explained our situation perfectly.

My little man is doing much better now but we still have many difficult & frustrating times. For me, it is hard to determine how much is SPD, how much is 2yr old or 3 yr old stuff, and how much is just him testing & manipulating.

If you do want to talk/email, I'd be more than happy to share our experiences. Feel free to contact me.

Thank,
P.

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