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Who to go to for evaluations?


DarcyM
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How have you found reliable trustworthy evaluators?

 

I'm not sure even where to begin. I think I can set up something through the hospital where he was born.

 

Short story:

~32 oz preemie, bilat Gr III bleeds, ROP (vision issues, strabismus, amblyopia from the vent), 3+ years oxygen dependent, failure to thrive (24-25 lb at 4.5 yrs), developmental delays. Will be 5 years old in May. Looks 2, wears 18 mo size clothes.

 

Dismissed on his 3rd bday from AEA's DT, ST, OT, PT as 'not severe enough' delays, and since he won't be attending public school, they don't feel he needs services aimed at "preparing him for the classroom".

 

Since his bleed was so massive, I feel like I should start there. I'm not sure if the information gained from an MRI would change how we treat him. I question things like delayed myelination, or brain injury from birth.

 

The older he gets, the more obvious it becomes that he isn't learning like his brothers did, even age-adjusted. We recently switched pediatricians when we moved and I feel like we're back to square one.

 

How have you found evaluators? How do I know who is "good"? His eyesight is already being followed by a pediatric opth who specializes in ROP, so that part is covered.

 

Thanks for any insight. This child is so beloved. I so fear what his future holds. I do not want him the subject of ridicule. I also feel like I don't currently have the tools I may need to teach him. I also know that I would do whatever it takes to make myself that teacher.

 

What steps have those on a similar path taken? Thanks, most sincerely, for any advice.

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Our first step was to ask our pediatrician for a referral to a speech therapist. The ST thought an OT evaluation was needed. The OT requested all the other stuff and out pediatrician arranged it. (PT eval, developmental ped, orthopedic eval, and child psychologist.)

 

When he was 4, my 3rd son recieved school services at home, even though the county knew we were not planning to enroll. Babies can't wait goes to age 3 nd then the school system kicks in. Both my 2nd and 3rd sons attend speech therapy at our local school.

 

But not all states offer this to homeschoolers. But they should offer something at age 4 unless they have state-wide pre-K. (I know of no states that do.)

 

From reading your discription, I see no reason why he wouldn't qualify for services. My kids do and thought they have developmental delays....they play sports on regular teams and most people don't even notice they have issues.

 

Ask your pediatric opth for some reccomendations. They may have heard some names that you can pass on to your ped.

 

 

I hope you can get some help soon.

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We just saw a developmental pediatrician. She didn't have anything new to offer us, but she would be a great resource for someone like your son that doesn't have services set up already.

 

I would also see about a peds. neurologist to do another MRI. Since it is medical, you might get your insurance to pay for speech, OT, PT, etc. If not, I would fight with the schools for it. It could be that he has fallen just enough again to meet their guidelines for help.

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IMO, your son needs a complete neuro-psychological evaluation to start with. What I did was call our HMO and tell them that my dd needed a neuro-psych eval. They told me I could self-refer and gave me their in-network clinic plus several out-network clinics to choose from. I made the initial appointment and talked to an educational psychologist. Between us, we worked out what type of testing made sense in our situation. For us, it was the usual IQ and achievement testing, plus more in-depth spot testing by the neuro-psych for areas that needed it. In your situation, you would want the neuro-psych doing a complete evaluation and running the show. Even if your initial consult is with an ed-psych, you would want to start working with a neuro-psych from the beginning. Some children's hospitals have teams of specialists that do neuro-psych evals. That can be a good option too.

 

Neuro-psych evals cover a lot of territory, but they often leave out a few evaluations that you really want to get. After all the other evaluations, I would recommend getting a developmental vision evaluation by a qualified developmental optometrist. Your pediatric opthalmologist probably would not like this, but as a parent I would really want to know where my son is in terms of visual efficiency skills. DO testing will provide this information. (I am biased in this regard because my dd had multiple severe visual efficiency deficits that went un-evaluated and un-diagnosed by her opthalmologist, who is otherwise a great doctor. My dd benefited greatly from vision therapy with the optometrist, and I'm convinced she would never have become fully remediated in reading had we failed to remediate this particular area of her development.)

 

What state are you in? That matters a lot. It sounds as if your school district may be wrong in denying services. You really need to pursue this with people who are familiar with your state laws and, if possible, with the specific school district you are dealing with.

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dc is of school age. Usually these services are provided through the public schools after age 3. Some schools will provide services even after your dc reaches school age if he is home schooled. Send the school a letter. They are required by federal law to respond within 30-60 days (I forget which)

 

I think in your case, I'd look for a neuro-psych for a complete evaluation instead of a developmental pediatrician. The premature birth and other problems are why.

 

As Claire said, I'd also look for a dev. optometrist. (And you thought that was one area you didn't need to worry about :rolleyes:) Opthamologists have only started to enter the developmental vision field and they are wanting to re-invent the wheel because of turf wars. Dev Op's have been developing the field for 20-25 years.

 

I'd also read The Out-of-Sync Child and see if you think it applies to your dc. Often times premies have sensory problems because they spent so much time in an incubator and hospitals. I don't see anything else in your post that would indicate this problem, but it's worth checking into while he's young.

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Just a follow up. He will getting a complete clinical eval from a host of professionals from a big, state children's hospital about 2.5 hours from our house. He will be evaluated by:

neurology

neuro-psych

speech

OT

a learning specialist

 

And I forgot what else. Depending on the consult, he may be getting an MRI.

 

Thank you all. Like any mother, I am both anticipating this and dreading it all at once. I believe those are answers we need, but probably will not want to hear.

 

Upward and Onward! :o

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