Expert: Jene Aviram - 11/8/2010

Question
QUESTION: Jene,
I just read a previous post that you responded to and had to comment.  My son too is 3.4 mths and the school district said the same thing to me--basically that he has some signs of spectrum disorder, but that it doesn't necessarily mean his services would change.  They are guarding me with things like, "if you get the diagnosis" (which any 2 doctors may disagree on )he may be placed with lower functioning children and that is not necessarily best for him. He has been in EI since 2 and now a special ed preschool for 5 mths. I have had 3 PTC and no one is saying autism, but when i ask, they say again he shows "some signs." I feel like unless he is spinning in the corner its not urgent. I took him to a neurologist at 2 and she said NO to autism after 2 hours of observation.  While i am unsure i am at the same time happy with his progress. He is talking alot more...4-5 word sentences, much better eye contact and is more social w/kids his age.  He is v.smart can count to 22 now and can recognize all letters upper and lower. He still drops to the floor to be resistant, has trouble sharing,and likes to watch wheels on cars,and at times gets his eye v.close to things as he passes them (like a chair or table)  H likes to push/pull things. He doesn't do these things all the time.  Maybe that is why they don't seem to be concerned.  What more, i mean what should i be asking for if i get a diag and he is getting better, can't a low spectrum kid still be in an integrated class.  They make you feel like a diagnosis puts him w/low functioning kids and he won't progress as much.  I am utterly confused again and again and again. I can request an ADOS through the district but now i am confused again.  Please help, i feel like you maybe think there is more i can do for him.  He is getting 4x/speech 2OT. 3 days at preschool he is w/a self contained class,& 2 days he visits for an hour an integrated class.

ANSWER: My sincerest apologies for the late response.  I typically get notified immediately when there is a question and I just found your post and one other in my junk mail.  Not sure why that happened!

I can hardly believe my eyes!  I had to re-read your post about 10 times!  A diagnosis does not mean that your school has the right to put your son in a lower setting!  If your son is coping in the setting he is in now, then there is NO REASON to change it!  A piece of paper with a diagnosis certainly could NOT change that!

In fact, the LAW States that your child must be given a free and appropriate education (FAPE) in the LEAST RESTRICTIVE SETTING!!!!
That means, they would have to provide more services for him in a typical setting.  For example, they might need to provide an aide for him in a typical classroom, with behavioral supports..  For example, you might request a behavioral consultant to provide strategies and support.    

Your son is a little boy.  If he is not doing as well as you would like in the setting he is in, they need to look at the support they're giving your son.  Your little boy is certainly not responsible for any failure!  He's already proved he's smart and  he can cope.  Of course it's more expensive for the school to provide your son the help he needs, but that is not your problem.
Unfortunately, it's often a struggle to get services for our kids with special needs.  There is only so much budget to go around, and those that shout loudest get what they want.

I would absolutely leave your school out of all the testing and evaluations.  You need an objective opinion.  Ask your pediatrician for a referral to an expert that specializes in childhood disorders such as autism and ADHD.  If you don't get anywhere with that, I would contact the Autism Society Of America Chapter in your area.  You can bet that the people here would know of some great medical practitioners.  You can find the chapter for your area at this link.
http://www.autism-society.org/site/PageServer?pagename=community_chapters

I also sincerely suggest you spend some time on wrightslaw.com
You can search for information you need.  Familiarize yourself with all the things your son is entitled to by LAW.
Wrightslaw is all about special education and what your child is entitled to.  You'll find many articles on what your school can/can't do.  As an example try searching "Least Restrictive Setting".  After reading an article or two, you'd see how absurd it is for your school to threaten you with a lower setting.  Here is the link:
http://www.wrightslaw.com/

If I were in your shoes, the first thing I would do is find a good professional who is objective and who will give your son the evaluation he deserves.  Then I would spend some time on Wrightslaw, because you'll be amazed just how much your son is entitled to.  And keep in mind that the correct services means faster progress.

I hope this has been of some help.  I wish you great luck and success.

Jene Aviram
http://www.nlconcepts.com


---------- FOLLOW-UP ----------

QUESTION: I called the pediatric neurologist who saw him at 2.8 and they said they certainly can re-evaluate him but the office mgr had no idea what an ADOS was. I am on Long Island, i thought you were too.  Do you know Dr. Marian Bertragum with North Shore LIJ.  Are you familiar with her.  She saw my son at 2.8.  I am wondering if i should go back to her or go to the Cody Center or a developmental ped.  My pediatrician gave me a referral to a neurologist at Stony Brook and i went to her...i would not recommend her, she wasn't too interested in my son.  I asked the school but they keep telling me their psychologist can do it w/a referral from the district.  Any advice.  If you are not on Long Island i understand, i appreciate all your help and i plan to do every one of your recommendations.

Answer
Hi,

I am familiar with Dr. Marcia Bergstrom and have heard wonderful things about her.  From what I hear, you're better off seeing her than going to the the Cody Center.  Another person who has rave reviews is Dr. Taff.   I think her first name is Ingrid.  She is in Great Neck and I hear it's quite difficult to get an appointment with her, but for good reason.  If I were you I would not do any testing through the school district.

If you're having trouble getting services, or your school is "snowing you under" I sincerely recommend you contact the Long Island Advocacy Center.  http://www.theliac.org/Home_Page.php

Their service is free so they might take a couple of days to get back to you, but they will give you all the "legal" info and tell you exactly what to say to your school if they are telling you things like "your child will be placed in a lower setting if he gets a diagnosis."

In fact, they will direct you on exactly what to do, whether it's putting something in writing or giving you someone to contact.  They are truly amazing and they know their stuff.

I hope this helps.

Jene Aviram
http://www.nlconcepts.com