Tuesday, October 26, 2010

We Will Have to Agree To Disagree

Effective teamwork is all about making a good, well-balanced salad not whipping individuals into a single batch of V8.  ~ Sandra Richardson, OD Consultant ~

What does it say to you when you're advocating for your child and all you're really asking for are a few accommodations and the CSE chair responds with "we will have to agree to disagree"?  And, all the while he was saying it, he was shaking my hand and smiling in my face.  For me, it felt like I was slapped in the face.  How dare I even consider to ask for the smallest thing such as Cuisenaire Rods to help my son with math.  Or, to increase the O/T to twice a week in a 1-1 for my son who has handwriting issues.  These are some of the requests I made at the CSE meeting this past June that were denied.  Like the quote above, I felt as if I was whipped into submission.  By the way, I first learned about cuisenaire rods from Dr. Tepp during the IEE interview.  And, for whatever his reasoning was, he failed to add it to his report.

I have a kind of post traumatic stress response to that statement because I just can't get the image and words out of my head.  It's awful because those words and image tell me this school district only cares about their agenda exclusive from parents.  Under New York State special education regulations and federal law, the first people at the top of the list on an IEP team are the parents.  That's right, the parents.  It sure didn't feel that way to me or my husband at the June meeting.  We refused to agree to the IEP.  In fact, the school district is using an IEP that wasn't signed by me and my husband.  I wrote several letters in June with copies going to the special education associate in Albany requesting a team resolution that went unanswered.  We continue to be in disagreement and it is now the end of October.

What to do.  What to do.  I'm not an idle person.  I don't like the feeling of grass growing under my feet so I got busy during the summer months.  Aren was a real trooper.  He endured quite a lot.  I needed answers that couldn't wait and I had to make a V8 out of my kid because, his permission wasn't an option.  I did need him to participate and for the most part he did.  I dragged him to an O/T and had him evaluated.  Yep, it was conclusive, Aren's handwriting was immature for a kid approaching 3rd grade.  I took him to a pediatric neurologist where blood work was ordered.  My son is absolutely terrified of needles.  It is heart wrenching seeing how he reacts to it.  He cries and screams.  He has to be repeatedly consoled and sometimes held down.  It is emotionally draining for everyone.  My son had to endure an MRI of the brain with sedation; another needle but this time it was an IV.  My son had to be wrapped in sheets and held by me and a nurse in order for the other nurse to insert the IV.  My kid was in panic mode.

All of the testing was necessary because according to the district, everything was honky dory for my kid at school.  He is simply a kid who is "slow to learn" and his performance is the "best we can hope for".  Another aside:  "best we can hope for" is a statement that was made by Dr. Tepp.   Thank you, Dr. Tepp for failing to see my son's potential.  If you read this blog,  I want you to know how much more difficult you have made it for us to advocate for our son.

At the June meeting, the school psychologist suggested we change the IEP classification from OHI - other health impaired to MR - mentally retarded.  I can only imagine the look on my face when this label was suggested to me.  I'm sure it wasn't good because I just don't hide my emotions very well at times.  I really need to learn to have a better "poker" face.  Note to self - work on poker face.  I managed to take a deep breath and said, we'll just need to revisit that at the end of the school year.  Right now, I'm not comfortable making that decision.  The school social worker looks over at me with a "sympathetic" look on her face and says, "I know it's difficult to think of our children as being mentally retarded".   Are you kidding me, lady!

I want you to know, we never got to discuss goals for Aren.  Parents have a right to write goals in to the IEP but that never happened.   In fact, before the meeting was concluded, the P/T and the classroom teacher got up and left with some excuse they needed to be elsewhere.  When I think back, the only people left in the room beside me and my husband was the CSE chair, social worker, psychologist and I think the special ed teacher but she may have disappeared as well.  I have been to a number of CSE meetings over the years and never once did anyone leave before the meeting ended.

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