I HAD ASKED EVERYONE

by amy
(stuarts draft, va)


My daughter is 2 1/2yrs old. We have been to multiple pediatricians and specialists. Everyone always gave us the same answer 'she's growing fine, come back and see us in 6 mos.' The only diagnosis' we could get were hypotonia (low tone) and developmental delay. Of course, no one could tell us why there was a delay or where the low tone came from.


I have been so frustrated and ready to pull my hair out. My 2 year old can't walk or talk, if she eats anything other than 2nd stage baby foods or yogurt she gags until she vomits. She has severe meltdowns whenever we change tasks. I haven't known what to do with her.

One doctor suggested putting her with an Early Intervention group for her delay. After numerous rescheduled appointments, we were finally able to meet with the educators. The Occupational Therapist took one look at my daughter and the questionnaire and said she had a Sensory Processing Dysfunction. I'd never heard of such a thing and promptly went home to check it out.

I was in total shock. This was my daughter inside and out! Why after all this time had no one said this. FINALLY, a diagnosis and a starting ground to get some help. Unfortunately, Early Intervention can only work with my child until her 3rd birthday so we are very limited on time, but at least I have a diagnosis that I can take with me and find the help I need.

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Jun 12, 2013
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exactly!!
by: Anonymous

My son is 2 and a half now-he just got diagnosed with low registration SPD today. He was born 3 months premature and as well had hypotonia (to which he grew out of) and has developmental delay. Your story is my son to a T!!! Except we have been seeing the specialist since he was born-due to his prematurity and we are just finding out today what is really going on.

Apr 22, 2009
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I share your frustration and relief!
by: Kim

My SPD son just turned 4. He was diagnosed with SPD about 6 months ago and attends OT twice a week. Before he was diagnosed, we went to so many specialists and did so many evaluations, but nobody could give me a solid answer. Finally one pediatric specialist recommended having him evaluated by an OT - and BAM! Suddenly everything made sense! We read many books and online resources and it was like I was reading a book written about my son!

Now our biggest issue is knowing what behavior is him just being a 4 year old, and what behavior is because of his SPD. And how do we discipline him in a way that will not have a negative impact on the progress we've made with his OT? Does anybody else have this issue?

Apr 11, 2009
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Confused...
by: Anonymous

My 2 year old daughter was just tested for Autism. They told me that although she displays signs of autism she does not fall into the Autism Spectrum. Then they started to talk to me about how she was measuring very low in her sensory abilities. She has low registration.

I am supposed to get a full written report in 3 weeks from the psychologist, OT and Speech Therapist. She currently works with a speech therapist 1 hour a week and an OT 2 hours a week. Is this just a developmental delay or is it permanent?

They never said "disorder". They just told me percentiles. 1 percentile in language and 14 percentile in motor...I am not sure that I have the whole picture. If it was SPD would they have said that in the meeting?

Mar 23, 2009
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GOOD JOB!!!
by: char113

Well your story sounds exactly like mine, except we just got Bryson's diagnosis 3 weeks ago and he just turned five. I have found through my research though that if we get interventions for our children before age seven, we can help them thrive. I was very upset that it took so long, but I am thankful for the diagnosis. Bryson is doing so much better already. Keep being strong ans speaking up for your child.

Mar 19, 2009
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I completely empathize!
by: Amy, Indiana

It is so frustrating that pediatricians and most of the "medical" field are unfamiliar with sensory processing disorder. My first pediatrician even said he didn't believe in it! And he was even the one who referred us to an Early Intervention Program for a speech delay when my son was 18 months old. Anyway, now you have a direction to head towards.

Your local school should have a developmental pre-school where she can get OT and other help that she may need. Or you can find an independent OT at a hospital or local facility. Your current OT should be able to give you lots of information. Also, we did the Therapeutic Listening program, which uses music and sounds, and it worked magically on my son! See if anyone around your area is trained in that. Good luck!

Mar 19, 2009
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Here's to Mommy Instinct and being your child's advocate!
by: Anonymous

I am so glad your daughter has been properly diagnosed (although it took you to be her advocate). My son now 20 mths was diagnosed at his 18mth appointment but only because I was concerned with his language abilities... I didn't even know SPD existed nevermind that my son could have it. Like your daughter he was diagnosed with SPD at the Early Invention assessment. SPD can greatly hinder language development. He has been in 1 hr/wk OT and 2hr/wk speech and things are moving along rapidly. He is gaining language by the day and his spd 'symptoms' have already been greatly reduced.

I highly recommend a book called Raising a Sensory Smart Child by Lindsey Biel. I bought a ton on books when he was first diagnosed... this one sort of summed it all up. What has been wonderful for my son is a place called Little Gym. Basically it is a 'movement' class for toddlers. It really mimics his OT session and we can continue it after his 3rd birthday. If you have a gymboree type place around you...I would give it a try.

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