Evaluation Needed

[LesleyO]

I am so frustrated.  I took my son to the family doctor to begin evaluation for what I believed could be Aspergers Syndrome.  Since my son has shown many symptoms since early childhood- delayed speech, no eye contact, sensitivity to loud noises but yet almost seemed like he had problems hearing at times, a weird sense of no pain what so ever (would bang head against wall- split head open once didn't cry), obsession with puppies and lining them up,  obsession with adding and calendars, rocking back and forth and the list goes on and on.

The doctor agreed that he believes he is showing signs of Aspergers and the next step would be to get an evaluation by a Neurodevelopment Specialist to see if in fact that is what it is and if it is to provide my son with the proper treatment.  Well I left his office with a referral and was told to call the specialist to make an appt.  Guess what the appt would have to be 2 years out.  So I talked to the doctors again to see if I can go anywhere else and they gave me several other numbers to call and they are all either booked out 16+ months or don't evaluate children over 4 years old.  I was shocked especially that my doctor would send me on this wild goose chase when they said that they wanted my son evaluated and with a school plan by 1st grade which is Sept. Did they honestly not know that these specialist weren't booked out that far and didn't treat kids over the age of 4 especially since they told me they refer lots of people from their office to them and that they have several patients with Aspergers.  

Is this something that everyone else is experiencing to?  Such a long wait for the initial evaluation and treatment.

[MaryannesMom]

If you are in the US, go to your school.  They will do an evaluation.

[LesleyO]

I do live in the US.  This is were my frustration is completely going 100%++++.

I have several teachers who are family members and friends and they are all.  One is actually my son's teacher.  I think everyone is so afraid of hurting my feelings instead of helping the situtation.  They all keep joining in on the fun and sendiing me on the wild goose chase of wait 2 years.  Maybe I just live in a weird state for this or something.

[MaryannesMom]

I don't understand why your friends and family would want to see you go through this wild goose chase instead of getting you the help you need!  It may be time to separate from them and do what you have to do on your own.  You need to contact the Special Needs Coordinator at your school and demand an evaluation.  Your doctor says he suspects Asperger's, so that should be enough for them.  It is a constant battle, and I've personally found my family to be no help whatsoever.  How old is your son?  With all the new attention on Autism and the rise in diagnoses, sadly there are no enough medical professionals to keep up with the demand, so I'm not suprised they are booking that far out.  However, your school is obligated to do evaluation within a very short time frame (at least they are here in Michigan).  

[mjthewriterdad]

After a refferal (from anyone, including you), they have 90 days.  This is federal law.  IUf they don't intend to comply with federal law, you should start talking about draggin their @$$ into due process.  We parents woirked too long and hard getting this on the federal books to have you trated like this cr@p!

Two years is unacceptable!  Let 'em know that you know federal IDEA law.  

It's federal law.

[LesleyO]

Finally after much complaining and threatening to my family doctor about her ignornace they made some phone calls and it seems like I should be getting a phone call back today about scheduling an appt ASAP.  Hopefully that will be the case.  

If not I think I will try the 90 day thing.

I'm a little fearful of dragging the school into it.  My sister-in-law is assists children at the same school with special needs thru a local agency and she told me to stay clear of getting the school involved because the will only look for reasons to put him in special ed.  I believe that we have way to many people in our family stirring the pot.

[MaryannesMom]

I'm lost here--if your child has special needs (Aspergers), isn't the whole point trying to get him INTO special ed so he can get the services/help he needs?!

[LesleyO]

My understanding from my doctor and two family members and a friend who work in special educ services is that alot of Aspergers children are allowed to continue in regular classes.  Maybe that is a misunderstanding I have but that is what 3 people have told me that all are in special education within our school district and our family doctor.

[LesleyO]

My understanding is with scripts or specific regima (ex. teaching him to keep I contact during conversations, etc.) he would be able to continue on in regular classes and lead a regular life.  But honestly this is all new to me and I'm reading thousands of things and hearing many opinions and yet still am waiting for that phone call that hasn't come in yet.

And before I checked this I thought I should just call the Spec Ed Coordinator at the school behind my husband's back and get it done already because this is just ridiculous.  Because the longer we wait the more we aren't helping him.

[MaryannesMom]

How old is your son?  Yes, Aspies are often mainstreamed in the regular classroom, BUT WITH HELP and modifications.  For example, handwriting tends to be difficult for Aspies.  With an IEP (Individualized Education Plan), that you can only get if your child is classified as "special needs", they could be allowed to use a computer for all handwriting assignments.

[LesleyO]

He will be 6 in mid April.  He is very bright, fascinated with adding, reads very well, very artistic and creative.  His handwriting can be sloppy at times more so because I think he gets in such a rush to get it done.  Sometimes I get frustrated because he will be doing handwriting homework and he rushes through it and as I slow him down and explain to him that the capital letters have to reach both lines top to bottom sometimes he just doesn't get it or doesn't seem to care.  But I still can read it and it isn't really all the bad so I just always figured its typical of a five year old.  When I think back to when I was five we had a half day Kindergarten with recess and snack time and I don't even think we started handwriting until we were in 1st grade.  I know I couldn't add in K and I know I started reading the simple reading books in 1st grade so he is definetely way ahead of me.

[mjthewriterdad]

My daughter was in special ed since she was 2 and graduated with honors.  She was in regular ed classrooms for the most part.   The federal IDEA law also MANDATES education in the Least Restrictive Environment (LRE).    The trend is toward integration.  Granted, some children with special needs are placed in self-contained classrooms, but the way you describe your son, he may be placed in regular classrooms with maybe some supports and maybe therepy from time to time.

[SueNYC]

School evaluations suck and they won''t neccessary reveal Asperger's because they don't do a full battery.  School tests are basically designed to look for disabilities - my son's school psycho-ed was useless - he came in the 99% which meant no service.  ALot of kids with Asperger's do exceptionally well in school - it is the environment that is a nightmare for them.    Bring him to a neuropsych - and  get a 60K a year school.  See the difference in what a few extra ttests mean.  One of the children in my building (who actually seems worse off than my kid) used the schools test at an impartial hearing and lost.  

Why does it take so long?  Well - because it takes along time to test a child.  The neuropsychs at NYU do 2-4 children a week.  The test took about 10-12 hours with the breaks.  ALot of breaks are neccessary due to the nature of the children involved.  Also, you are basically in the baclk of the line.  Clients that were intaked long before you - are usually scheduled first if there is a cancellation.  We were going to NYU for 2 years before we had it done - and they obliged us by scheduling us in 8 weeks.  Our lawyer told us to be thrilled - usually current clients have to wait 6 months.

It is not a wild goose chase.  The evaluation lasts for about three years before a judge if it goes to far) will queston it.  As far as dx's and all - be careful - schools usually are not great at following IEPS when it comes to Asperger's children.

[SueNYC]

Dads like to wait it out - my husband did the same thing.  Either way, wait it out - because something will finally give.  If you go behind your husband's back he is not going to trust you (take it from personal experience).  Your husband has very valid concerns (especially if yoou have a bright kid) as many special ed classes teach down to the chiildren.  I was shocked at what I saw when I went into some that the city recommended - it is no wonder that when they had to post the state exams that the majority did not pass.  Our doctors said that he needed an accelerated curriculmn -to keep from shutting down - something the school could not accomodate.  I am still wondering what the word's IEP actually mean - we were asking for an individualized curriculm - if they can lower the satandards then why, logically speaking, couldn't they up them.  By third grade my son was so miserable (both emotionally and academically) that my husband relented.  And though we would love him to be in a regular school again - it is amazing to go to a school where everyone understands the condition, they teach the children to work with their deficits, they magnify their strengtrhs (my son is in 4th grade and he is reading Orwell, doing math 2 years above level, and getting alot of breaks to "re-organize" his thoughts - as they like to say there.  Special Ed isn't a bad thing - if people who know what they are doing are doing it.  Mind you they have only 5 kids in his class and three adults to help them negotiate their day.  All, except for one, have pretty high IQs and are working at a much higher lkevel then a general ed class.  There are 30 kids in the school and 3 OTs, 6 speech therapists....and a 2:1 child adult ratio.  When given all that support - these kids can flourish.   I am all for special ed classes for our children - but not the way they are run in NYC.