worth getting a label? or riding it out? - Mothering Forums

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#1 of 7 Old 10-15-2010, 05:42 PM - Thread Starter
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DS is almost 3....pretty global delays. Also has SPD with private OT once a week, and almost aged out of EI, which was great a year ago, but due to budgets and his gray diagnosis, we were cut services. Mostly proprioception issues, needs deep pressure, hard swings. Type of kid that would love a roller coaster.

Always had very low tone -- very squishy kind of kid.

He was a failure to thrive, had multiple food intolerances, upper and lower GI done, adenoids just removed. Still on an appetite stim med (periactin), plus prevacid.

Socially he's very shy, but does warm up...he's in a 2x play school for social interactions, and seems so be adjusting well. Actually raised his hand to answer a question the other day!

Gross motor...very delayed, walked at 22 months, but still not running, jumping, climbing stairs etc. Playground play is a disaster, unless he's in the swing.

Fine motor...delayed.

Expressive/receptive language, bit delayed, but talking full sentences...not really worried here. He defin understands, often way above what I think he should.

Dh and I am wondering if its worth pushing to get a label...pedis not sure he will fit within one at all but matter of learning where he's delayed and support that as best we can.

Thoughts?? I feel like this could open a can of worms.
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#2 of 7 Old 10-15-2010, 06:03 PM
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If your son isn't receiving needed services due to lack of a diagnosis I would get one.

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#3 of 7 Old 10-15-2010, 06:07 PM
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I think it depends on what your plan is for school. You could ride it out to school age and then determine if it would be beneficial to get a diagnosis so that he can qualify for services at school. (If you are not planning on homeschooling.) We homeschool and are seeking out a more formal diagnosis so that we can better determine how to best support DD and in hopes of making life easier with getting services covered by insurance.

Michele - Homeschooling mom to Hadley, (10/03 - the 23 week preemie miracle) and Noah, (08/05)
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#4 of 7 Old 10-15-2010, 07:13 PM
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I agree. I was against labeling, but it's opened a *lot* of doors. Good luck!
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#5 of 7 Old 10-15-2010, 08:32 PM - Thread Starter
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He's elig for school services in less than a month...we do have fantastic public schools here, with great services, but, he's such a grey area that I'm unsure how this is all going to unfold for us.

The city preschool here is 4 days a week, which is way more than what he could possibly handle, but he's entitled to walk in services...bc of his bday, he would have to do 3 years of preschool. My ideal goal is keep him in the neighborhood play school til next year (with walk in city services) and reconsider the preschool for next year depending on how he's doing. Right now it would just physically be too much for him.

I'm thinking that going through all the testing, even if he doesn't fall into anything, might be worth the paper trail if anything.
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#6 of 7 Old 10-15-2010, 09:23 PM
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What's the upside of not narrowing down what's going on for your son?

I personally believe in remediating focused on the right cause. So, if a child is struggling to walk - is it core strength, motor planning, balance, structural problem, developmental delay? The approach for each cause might be different. I've always looked at it as my child's time is valuable, I'm not going to waste it on strategies that aren't effective.

Also, even gray area kids can get services if the manifestation of their challenges is significant while the cause is as-yet unidentified. It's common to not definitively nail down a diagnosis in the preschool years as it's hard to tell what's developmental versus "symptomatic."

Mom to a teenager and a middle schooler.

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#7 of 7 Old 10-15-2010, 09:49 PM
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I would at least get the school testing done at age 3.

One of my DD was gross motor delayed & socially delayed. She was in EI from 9 months to age 3. We did private therapy (OT & PT) off and on for 3 years from age 14 months to 4.

We tested her at 3 yrs per EI- she did not qualify and we did private therapies (Ot & PT).Then 8 months later she was referred by our local Parents as Teachers and again tested through the schools. This time she qualified----their was now a big enough 'discrepancy' of where she should be and where she was at age 3.75 (it was not great enough when she was 3).

She got OT & PT in a general education preschool setting for 1/2 days 4x a week all last year. This year she was reevaluated and did not qualify

The year of in-school therapy was wonderful!! She was fully included in the Preschool classroom and only pulled out for PT.

It was a good choice for us!!! I am SO GLAD we got the early intervention and I feel it made a huge difference. Over the course of 4 years, she had many labels (PDD_NOS, CP, OHI, etc)....to me it was not the label that mattered, rather the label allowed us access to services that would help her (and us) develop skills.

Now at age 5 - she is label free (at least per IEP)! Though we have been told that come Kindergarten we may have to look at some more support, for now she is thriving in a general education PreK. We got tons of support and I truly think it made a huge difference. Even if she still needed support (IEP), I think all the therapies and help has made sure that in the long run, she will have made more growth than she ever would have w/ out.
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