Every day is different with Noah

by Nana Bears

My 4 1/2 y/o grandson Noah has been diagnosed with SPD. Insurance refused to pay for OT for mild developmental delays of 6 to 8 months behind. SPD is not a diagnosis they'll except either. Noah is a very challenging child. He scores very high in all of the HYPO for every area. This perpetual motion machine and risk taker has already caused himself 2 concussions.

He can't self regulate or self calm at all still. Noah will use his advanced verbal skills to try to find a way to calm himself when he is anxious. This can lead to non- stoppable persevering behaviors and the repeating of the same question over and over to the point of driving the adults over the wall. We are not sure why this occurs-insecurity/ anxiety or poor short term memory, either or, or both, it just adds to the spiral downward.

If another child starts to whine or a toddler cries in distress- Noah as to match or out do the other child's cries- empathy?- distressed by emotions he can't separate from his own? or he is trying to generate his own noise to match the level of noise around himself. Self regulation is not one of his skills in any way shape of form.

Oddly, when he is in a new setting with new adults and new rules- he is in a quiet alert and focused state- the very state we would wish he could always be in. This has caused the pediatricians/ OT /PT/ teachers to doubt our concerns. Just until he becomes familiar with the people and environment. That is when he returns back into his normal state of "Tigger- Taz" bouncing off of everything and a whirlwind of destruction. That is when the experts finally "Get it" and understand our concerns.

I have great faith that this combination of challenges and personality will help him as an adult to achieve the impossible. It is the getting him safely through childhood- that is our real challenge.

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Jan 23, 2014
Get a diagnosis the insurance will work with
by: Anonymous

It sounds like you're a very loving grandma. It can be tough. I have three kids with SPD. The older two have been diagnosed with ADHD and one also has Mixed Expressive-Receptive Language Disorder and anxiety. My youngest will eventually have a diagnosis of ADHD, as he's definitely following in his brother and sister's footsteps, but I'm waiting to get him on meds until he's older. My oldest is nine, and though he has ADHD, he has been able to keep his grades at an A/B+ level. This means that school will not pay for an OT to work on his fine motor and tactile processing issues, even though they cause him problems every day. I was able to get an OT to work with him through our insurance BECAUSE he had a diagnosis of ADHD first, which IS covered by insurance. If your grandson can get such a diagnosis from a doctor, and it sounds like, from what you described, he fits the bill,he can get the OT stuff covered as a secondary issue. He actually sounds a lot like my nine year old, an intelligent constant talker. Good luck!

Jun 01, 2013
Similar Experience
by: Anonymous

This is my son to a tee. I have an 8 year old who was diagnosed with SPD and ADHD. It sounds like your grandson has auditory sensitivity, and he tries to mask the existing noise (my son does the SAME thing, even with the hair dryer, vacuum, etc). My son is also extremely quiet, polite, content when in new environments, and people often question his diagnosis. It is only until he is "comfortable" that his true personality comes out. I have been thru pediatricians, therapists and occupational therapists.

OT was $800/ month.. (I still cannot believe insurance doesnt recognize this. Such political crap..It makes me so mad) I had to pull him out of OT because we just couldn't afford it. OT isnt an overnight thing, you have to go for months and months.

I did decide after a few years to put him on meds for the ADHD. After going through a few trials with different meds, my son is on focalin, which does not strip his personality from him, but it does calm him to a "tolerable" level- especially for school. It isnt perfect, but then again, I didnt want my son to NOT be who he is. (He has the anxiety issues as well.)

I also believe their strong willed personalities will take them far, however, it is no doubt, challenging (for us and them). It wasn't until first grade that I truly realized my son was ADHD - At age 4, I was more focused on the SPD.
Life does have to be slightly modified for these kids, which was the hard part for me. Still trying to adjust to it somewhat. But over the years, I have come to accept it because of the love we have for our kids. I commend you for recognizing it so early on, and reaching out for help. I dont know what your financial status is, but they say PT and OT helps. Schools will offer the PT assistance if your grandson has Autism or something else, not SPD alone. As he gets older, if he has ADHD, you will see the signs. (not saying he does, just saying its possible)..Good Luck !

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