Sharing the Frustrations of NOT Receiving Appropriate Accommodations for NLD


I am a parent who has a 10 year old 5th Grade student with NLD.  We were fortunate enough to find out early (3rd and 4th Grade that he has NLD (VIQ 123/PIQ 99).  Apparently to no avail now that he is in Middle School and we are still without an IEP and still trying to prove that he needs one in order to succeed in public school and meet his academic potential.

Determining his disability has gotten us nowhere in getting him the support he needs in school.  Our school system fails to recognize NLD and seems uneducated about it's presentation, and how to accommodate it academically. 

On a regular basis we have tried to make these educators see what our son needs in order to succeed with his schoolwork and why!  I am so frustrated and at the point where I feel they think I'm crazy, he's lazy and more!   I am not, he is not and he is entitled to and deserves a free and appropriate public education!

The administrators and special ed people have told us on numerous occasions that in order for him to qualify for an IEP that he must be "failing to progress effectively".  There is a fine line to that statement with a child with NLD.  Because this child is reading and spelling at higher than grade level and appears to be competent at certain things these educators can not, or will not recognize his need for an IEP!  They have actually told me that he will have to fail in order to qualify for an Individualized Ed Plan!  Is this some kind of mean trick for kids with NLD?  I know so many kids who are on IEP's that have far less trouble in school but more obvious disabilities.  Why can't these educators see NLD for what it is?  It is debilitating neurological condition that can be easily addressed with the proper support!  Do I have to allow my child to fail and his emotional well being and self esteem to suffer in order for him to get the IEP that he needs and deserves?

He IS progressing in SOME areas due to the little support he is receiving from his 504 plan, and a lot of support at home. Otherwise I don't feel like the 504 is an adequate form of support for him.   Without anything he WOULD be failing (and anxious and depressed).  In other areas he is struggling and just barely getting by.  I am doing what I can but I am a parent and unfortunately am not a teacher.  He needs more compensations, accommodations and modifications as well as some specific instruction in school. With the proper support he would be succeeding relative to his true intelligence and higher potential.  It seems that either this child has to be left to his own devices (to fail and prove that he cannot do grade level work without support) in order to qualify for an IEP, OR, he will end up being pushed along the system by the educators receiving barely passing grades because he doesn't have the proper support. Is it possible that this could actually happen and they end up telling me that he doesn't really need an IEP, but is just a mediocre student (which he probably wouldn't be with the right IEP in place!)  Mind boggling!

Are most people with a child with NLD in this type of situation?  Or, am I just unlucky enough to be in a school system that is unable or unwilling to recognize NLD as a serious and real disability?  Do you have any advice for us, or know of any books, articles, websites, people that could help us with this type of problem?  We have had an educational advocate and meeting after meeting and don't seem any further now than we were before.  We seem to have to start over each new school year with the same thing and all new teachers etc...(We moved on to Middle School who told us last year that a 504 would be the same as having an IEP in their school so we agreed to it)  We DID get IEP eligibility last year from the Elementary Special Ed but at the meeting scheduled to write the IEP the elementary principal decided to tell them that my son DID NOT need an IEP after all (because of  high test scores and a sudden change in the teachers interpretation of what progressing means!)   The IEP was not written and we were offered a 504 instead.  It is not working and I feel like I'm back where I started, except in a new school with all new educators! Any advice?