ISO um, developmental detective? Don't even know! Help plz

amother

Wed, Feb 18 2015, 12:30 am

OP here. The child is not in a public school, but I am familiar with the PS system and they would not cover anything nearly as comprehensive as I'm looking for. They'd put the school counselor on the case, who may not have any specialization in your kid's type of issue and may never address the overall/underlying problem, instead focusing on preventing disruptive behaviors case by case. The child is currently getting OT and SEIT from the DOE but it does not seem to be getting to the root of the problem. The agency that manages the SEIT offers a behavioral consultant, but again my worry is that they would address the behaviors superficially and if the underlying problem is never discovered then it will just come out some other way. The person at the school recommended this private behavioral specialist as a friendly helpful favor, not an official school recommendation, neither the school nor the district covers anything of this nature.

The child generally seems to sleep well, with occasional disturbances but not often enough to account for the behavior problems. I do have plenty of opportunity to observe her in her sleep as I go to sleep much later than she does and my workspace is in her room after she falls asleep.

She is a picky eater when it comes to proteins but takes a vitamin/iron supplement which according to blood tests has been effective at keeping her iron at normal levels.

Still looking for actual names/recommendations of neuro/psych/developmental/behavioral/whatevers in NY. Thanks.

My insurance's listing doesn't have a separate category for developmental pediatricians so I need to first come up with a name and then check if they're covered.

I know you can't base things on one person's experience but my friend described what their evaluation was like and I can tell it is not what I'm looking for.

Ashrei

Wed, Feb 18 2015, 12:08 pm

RUSK, I think they take insurance but have a HUGELY LONG WAITING LIST:
http://webdoc.nyumc.org/nyumc_.....M.pdf

Private Neuropsych: Dr. Karen Weiss: 347-735-6217 $3k, maybe she has a sliding scale?

One of the medical referral services, I forgot which, recommended Dr. Adesman as a developmental pediatrician in LIJ: 516-802-6100

Hatzlacah!

PS: you're right there's no way BOE will get you the kind of eval you're looking for.

marina

Wed, Feb 18 2015, 1:32 pm

Ok, OP. This is not legal advice, just general special education information.

1.) You are entitled to request a full evaluation of your child completed by a public school district.

2. ) The team meets and determines whether it suspects your child has a qualifying disability. If so, they will get consent for the evaluation, which should include all areas where the team identifies concerns. You are part of that team. You can specifically state that you suspect ASD.

3) The assessments are not completed by a school counselor! They are completed in part by a school psychologist and special education teachers. The typical assessment includes a cognitive piece (IQ), academic achievement assessments, behavioral screenings, speech and language, and in your case, probably OT as well. You can also ask for a specific ASD screening.

4) IF the team completes an evaluation and you are dissatisfied with it, for any reason, you are entitled to ONE IEE (Independent Educational Evaluation) at the district's expense. The district will typically have rules and recommendations for their IEE preferred providers, but it is possible that you may get a more comprehensive evaluation that way. But you cannot get the IEE without going through the district's MFE/ETR first.

See here p. 22 http://www.p12.nysed.gov/speci.....e.pdf

Last edited by marina on Wed, Feb 18 2015, 1:40 pm; edited 2 times in total

FranticFrummie

Wed, Feb 18 2015, 1:43 pm

Disclaimer: I am only speaking from my highly biased personal experience, and I am not Dr. Imamother.

A few things jumped out at me. A girl, inconsistent patterns, some spectrum behaviors but doesn't fit the full profile, and sensory issues. Sounds exactly like my DD.

Have your daughter checked for Fragile X Syndrome. A simple blood test will give you the answer. I think they may even have a cheek swab for it now, but you have to request it ahead of time. Contact your hospital's genetics department for an evaluation.

It won't give you any easy fixes, but you will have a "label" in hand that you can take to the school board, and it will get you faster services. They take parents a lot more seriously if they can see something definitive.

If it's not FX, you may just have a really complicated and spirited kiddo, and all I can say is hang on tight, it's going to be an interesting ride!