Sensory Processing Disorder

Posted by Hope4 @hope4, Nov 11, 2011

I have adopted a boy who was diagnosed with Sensory Processing Disorder about 1 1/2 years ago. Just looking to connect with other parents of SPD kids.

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@mommaflores

I forgot that I had joined this group way back in 2012... So much time has passed, and yet we still don't have a lot of answers about our daughter with SPD. She is almost 6 now, started kindergarten this fall. We are now struggling with the school district and her IEP. She had been getting services under the category of "developmental delays", but now that she will be turning 6, they say she cannot be in this category anymore. The say that they have to "label" her as being in the Autism Spectrum (since SPD doesn't "exist") to continue getting speech, OT, resource help... We have had this discussion many times before, but ultimately, everyone who gets to spend more than 30 minutes with her agrees that she is not on the "spectrum". We got a referral finally from the Neurologist to have her evaluated by a Developmental Pediatrician... But of course, it is more than a six month wait to see him as he is the only one in Nevada.
Has anyone else out there had the same issues with IEPs? I am so frustrated with SPD not being recognized by the schools and doctors. In the meantime, my daughter is still not eating, having anxiety issues at school brought on by her sensory issues, and has lost weight since starting school. She will not eat more than a couple goldfish crackers at lunch, and comes home starving! The school district will not address the eating issue as it "doesn't affect" her schoolwork. HA! How can a child focus and learn when they are hungry???
After a year of searching, I finally found an OT that does feeding therapy, so we are just getting into that...
Any suggestions out there on how to get the school district to listen? Thanks! 🙂

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Since they want to put her on the spectrum, maybe just skip IEP altogether.<br />
I think kids, with OT and a compassionate teacher, can outgrow it. We never<br />
had an IEP with our daughter. We just asked the teacher if she could keep<br />
"fidget" toys in her desk, sit on a gym ball instead of a chair, and keep<br />
things to chew on in her desk. She is a perfectly adjusted teenager who<br />
still chews pen caps to a pulp, but she's happy.<br />
<br />
The problem with labels and IEPS is they make more work and stress. A<br />
teacher would probably rather help a kid self-soothe than do more<br />
paperwork. Labels haunt.<br />
<br />
As for eating, our OT played games with putting a bite in her mouth, then<br />
asking her to wait one second before spitting it out. It worked, but<br />
having choices on foods was key.<br />
<br />
Maybe she likes goldfish because they are small and manageable. Little<br />
nibbles were all my daughter ate for years. Nuts, seeds, fruit chunks, baby<br />
carrots, etc. Overwhelm can be an issue with big sandwiches. And stress can<br />
make it all worse.<br />
<br />
I honor your struggle. I am assuming the issue is tactile defensiveness,<br />
but i could be wrong. This is just what worked for us. I learned the fine<br />
art of the work-around. Trying to force a bureaucratic fix can be<br />
soul-crushing, and our kids pick up our stress, especially SPD kids, who<br />
are so sensitive.<br />
<br />
But I want to assure you, it does get better. There's hope! I'm not a<br />
doctor, but my daughter's nervous system matured and she's absolutely fine<br />
now. I think when she's stressed, she is irritable, but aren't we all? It<br />
does get better. Hang in there and breathe! : )<br />

REPLY

Welcome back to Connect @mommaflores and @concernedmtnmom. I'm sooo excited that you both came back and posted such amazing messages that will help many!

I should take a minute to introduce myself. I'm the new Community Director of Connect. We're re-igniting this community and you will start to see improvements to the site over the next few weeks, starting next week, making it even easier to connect and share wisdom like you have here!

Colleen Young
Community Director
Mayo Clinic Connect
connect.mayoclinic.org

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Thanks for the feedback. It is great to hear that this can be "outgrown" in a sense... After a lot of therapy and support. My only issue with doing away with the IEP is that I have seen that she really needs someone there keepjng her on task during work time in the classroom. She gets bored/distracted/anxious about doing the work wrong, and sort of shuts down. She is intelligent, and when asked to do the same tasks at home, she can do them. At school, I can see on her work exactly at what point she "shut down". Everything is neat, correct, and detailed... Then it turns to scribbles and random letters.
So... I think she can benefit from having the extra help, and worry that she will fall in the cracks if no one is monitoring her. We are now working with the OT weekly on feeding mostly, so I am hopeful this will help a bit over time.
Thanks again for your advice... I am sure I will keep you all updated as things progress. 🙂

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Does Mayo Clinic recognize SPD as a stand alone diagnosis outside of being associated with ASD?

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Welcome to Connect @OneTiredMomma
According to this information on MayoClinic.org, SPD is associated with ASD. http://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/basics/definition/con-20021148

Does your child have SPD? What challenges have you had by it not being recognized as a stand alone diagnosis?

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We are finally being heard. Kind of. Demanded a referral last week and ended up with an appointment with Dr Kotegal. He assured us this isn't normal. Finally!! We couldn't have handled another "Wait it out" approach. Family Med has gone out of their way to ignore our concerns and make us feel crazy. Our daughter will be 2 next week. She came into this world wild and screaming and hasn't stopped. Thrill seeker, sleeps 5-7 broken and restless hours in a 24 hour period, jumps constantly, always in motion, struggles with physical contact, colic that lasted past a year, terrible eater, always frustrated, becoming aggressive, starting to hit herself, tantrums that last for hours, can't self sooth...to name a few concerns. But she meets most of the baseline questions on the autism screening tool as yes or sometimes. Anyone who spends 5 minutes with her, including Dr. Kotegal, says she doesn't present as autistic. I agree. Mostly. I mean, something is definitely wrong.

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@OneTiredMomma

We are finally being heard. Kind of. Demanded a referral last week and ended up with an appointment with Dr Kotegal. He assured us this isn't normal. Finally!! We couldn't have handled another "Wait it out" approach. Family Med has gone out of their way to ignore our concerns and make us feel crazy. Our daughter will be 2 next week. She came into this world wild and screaming and hasn't stopped. Thrill seeker, sleeps 5-7 broken and restless hours in a 24 hour period, jumps constantly, always in motion, struggles with physical contact, colic that lasted past a year, terrible eater, always frustrated, becoming aggressive, starting to hit herself, tantrums that last for hours, can't self sooth...to name a few concerns. But she meets most of the baseline questions on the autism screening tool as yes or sometimes. Anyone who spends 5 minutes with her, including Dr. Kotegal, says she doesn't present as autistic. I agree. Mostly. I mean, something is definitely wrong.

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Eureka! It must be such a relief to finally be heard and to have a medical partner. Hearing your story i can definitely understand why you chose the username @OneTiredMomma.

What are your next steps with Dr. Kotegal?

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He ordered some genetic testing (waiting for results), some general labs (iron came back low otherwise normal), sleep study mid January. After we finish this round we will make another short term plan.

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@OneTiredMomma

He ordered some genetic testing (waiting for results), some general labs (iron came back low otherwise normal), sleep study mid January. After we finish this round we will make another short term plan.

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Did you ever read the book *The Out-of-Sync Child*? It is a great resource<br />
on the sensory issues. Not sure how current it is, but it has helped a lot<br />
of people. Hang in there...you are a good mom and fighting for your kid to<br />
just live a comfortable life. That's a tremendous responsibility and it<br />
sounds like you are a great advocate!<br />

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I haven't even heard of that book. Thank you for the suggestion. I'll have to track it down!
I appreciate your comment. Especially since my husband and I spend most of our time feeling like complete failures.

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