I'm back...with a Dx and MORE ?s...(m)

iVillage Member
Registered: 07-06-2006
I'm back...with a Dx and MORE ?s...(m)
3
Thu, 10-12-2006 - 9:49am

We have made some progress since my last (and first) post. I want to thank all of you for your support and suggestions. My 7 yr. old DS was Dx'ed with Nonverbal Learning Disability (NLD) last week. I'm sure you all know this, but NLD is next to AS on the spectrum. DH and I are doing our best to deal with this and are actually somewhat relieved to have a Dx, but of course very sad, concerned, and confused.

For reference, we live in Pennsylvania. DS was Dxed by Dr. James Coplan who has a private Neurodev. Ped. practice in Rosemont. I highly recommend him, but so far we have been denied coverage for the evaluation by our insurance co. HOWEVER we will not go down w/o a fight :)

So...with the answers come infinite questions. Here are two I hope that you can help me with.

Since NLD is not recognized in the DSM, will DS qualify for services through the state and school district or should we try to have his Dx changed to AS? The Dr. said he would not dispute an AS Dx, but was sticking with NLD pending our feedback after researching on our own. Should we confirm that the report for DS will specifically state "autism spectrum"? Is that enough??

Knowing what you know now and what you have been through, should DH and I attempt to work w/ the school initially or hire an advocate/attorney immediately? So far, the school has been accommodating, but we had no Dx, DS has no behavioral supports in place and is in a LS class (first grade) w/ 2 other students all morning. DH and I, at this point, really have no idea what we can even request in the way of services. I feel like time is of the essence here, but we are not made of money ($300/hr for lawyer fees...yikes!!)

Once again, thanks for reading this and responding. It has been such a great comfort to me to know that there are so many others out there in the community and in the cyber world who are going through the same emotions and frustrations that we are. Sending hugs and a pat-on-the-back to all of you for everything you do to help our SPECIAL kids!!!

iVillage Member
Registered: 03-26-2003
Thu, 10-12-2006 - 12:11pm

Hello,

I wanted to make sure to reply to you while it was fresh in my mind, however, I am a bit short on time.

Mostly I want to address the school issue. First what is an LS classroom? It kind of sounds like he is in special education already? If that is the case a diagnosis only helps in understanding what a childs needs are and how to meet those. If the school has worked with you thus far and are trying to meet your sons needs there really is no need to hire an advocate or lawyer. YOu can get alot of great info from "Wrightslaw" that will help you weed through and understand the maze yourself.

If he is not special education, a medical diagnosis still really does not guarantee educational services and they will need to do educational evaluations as well regardless and make an "educational" diagnosis. In other words figure out if he meets one of the 13 handicapping conditions set out by IDEA and if that condition is to the extent that he requires special education or related services.

A outside or medical type diagnosis helps to understand the child. It can also help access services through your insurance. It can give the school a base to start from. It can give you resources for support and understanding.

At any rate, I wouldn't go for the advocate or lawyer right away. I have only used them rarely myself and those were in situations where I REALLY disagreed with the school or district and was going past regular IEP meetings to mediation or due process. After 9 years in special education and a variety of school we are now just entering our 2nd such situation and this is the first time I am actually seeking out a lawyer. Prior to this educational consultants or advocates always were sufficient. I have only used an advocate 1 time (7 years ago so my dd would be included in K). Usually I use educational consultants just so I have an objective person who is knowledgable and I can bounce ideas off of, and even then only when I am not comfortable with a school situation.

HTH

Renee

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iVillage Member
Registered: 07-06-2006
Fri, 10-13-2006 - 10:25am
Thanks Renee. LS=Learning Support in our school district...it is Special Ed. It looks like he qualifies as having a learning disability but will not fall under the autism "umbrella" through the school, even though NLD is on the spectrum. The Special Ed coordinator told me that it is a medical diagnosis not an educational one. (((sigh))) I will definitely do some more reading...I just ordered Emotions to Advocacy. I have so little experience with all of this that I don't even know what services DS needs and what to ask for. I'm sure it will become much clearer over time and that I should stop panicking. Thanks for your support.
iVillage Member
Registered: 04-06-2005
Mon, 10-16-2006 - 6:19pm

What sort of services would your son be requiring to say in school? If you think you will need a TSS (Therapeutic Staff Support-someone to help him with problem behaviors in school) then you will need that Axis 1 Diagnosis of Autism Spectrum Disorders in order to qualify for Wrap Around Services (specifically a Pennsylvania thing) which will help you get behavior services to support your son and family. I don't think that NLD is an Axis one diagnosis.

But that's just the Mental Health side of things, not the school side of things. You still have the option to push to get the school to place an aid for your son (not impossible, just harder to get) as well as other things you would like them to do. My experience is that it's just harder to get stuff that way, I find it easier throught the Medicaid funding stream.

I also live in PA and I can help point you in the right direction if you want to email me at nomadicnun@aol.com. PA has a lot of support for families as long as you know where to go for it.

Best of luck,
Gemma