The long and winding road to educating David

A short time ago, a friend asked if I wouldn't mind speaking with her sister, who had a child with a different learning style and was about to embark upon the long, difficult journey of trying to get the New York City Department of Education to educate her son. I was happy to and in the end, sent her some helpful hints which I compiled from my "Useful Numbers" and "Tracking Document" (which currently was 14 pages in length) to both help her learn what to expect and what she needed to do in the coming months to get Ruben what he needed.

Not two weeks after, I ran into a mom from David's former school, who asked if I could prep her and share with her what I'd experienced to help her daughter secure a spot in a school that better suited her needs.

I am in no way an expert or a professional. I am just a mom who set out on a quest to get her son educated in a way that worked for him. I had no clue what an IEP was. Or how to get an IAP. Or how to ensure that David received the "free and appropriate education" that he was promised, that was his right. But little by little, I learned. I'm happy to share it with you and hope that it helps.


Helpful Hints

I hope you find the information below helpful. I pieced it together from various tracking documents I’ve kept during our long, hard battle with the Department of Education to educate our dyslexic son David.

IAPs:
Jeanine Pollack, independent IAP/neuropsychologyst, Neuropsychological Arts, 26 Court Street, Bklyn, NY 11201, 718-237-2333, ext 11, a private evaluation is done over two full days and she writes a detailed (ours was 27 pages) report. Janine is great, very gentle, personable and capable.

The NYU Child Study Center, 212-263-6622, also does evaluations, shorter waiting time. http://www.aboutourkids.org/

Attorneys:Neal Rosenberg, 9 Murray Street, Suite 4W, NY 10007. 212-732-9450, one of the top 2 attorneys whose offices solely handle disputes against the Dept of Education. (The other is Regina Skyler, who specializes in autism) Neal gives a free consultation. After you sign with him, a certain amount is due and you have to keep suing the Dept of Ed each year. The team in Neal's office works together, they're all very capable, very accessible and supportive, real pros.

Schools:
The 4 schools that are Bd of Ed funded (they take $$ directly from Bd of Ed):
Churchill (E 29th, NYC)
Lowell (Queens)
Community School (Teaneck, NJ)
Gateway (W 61st St, NYC)

Open houses at various schools start as early as October for the following year. When you file admissions application there’s an application fee, usually between $50 and $100. You also need to provide copies of various school reports. I would contact a school at any time of the year, though, as people move out of state, change jobs, school status changes and openings can occur.

I’ve visited two of the above during open houses in early 2007. They are:

Churchill School, 301 East 29th Street, 212-722-0610, http://www.churchillschool.com/
I loved Churchill. We sent in an application but they said David didn't meet their profile. They said he has the skills but couldn't access them. (But isn't that exactly the type a child this sort of school would benefit?) Anyway, it has a big, beautiful campus, each floor was color-coded so students wouldn’t get lost (people who reverse numbers and letters often have a hard time figuring out what floor they’re on…2, 3, 5…all look the same.) Churchill goes from grade K-12.

The Gateway School, 211 West 61st Street, 6th floor New York, New York 10023 , 212-777-5966
http://www.gatewayschool.org/
Gateway was the first school I looked at and I didn’t like it. (However, I looked at it when it was located on Second Avenue, between 14th & 15th Street, so things could have changed since then.) In retrospect, I think I was shell-shocked that my child wasn't "normal" and might actually need a place like this. Maybe I was a bit judgmental and wasn't looking at the school with an open mind. Or maybe it was the icky parents at the open house who were most impressed with the school because of the beautiful renovation! I just wanted to find a place that would teach my kid to read. A good deal of the students seemed to have sensory issues; they called an assembly so we could see the student population, which wasn’t very ethnically diverse.

Private Schools:The Sterling School, 299 Pacific Street, Brooklyn NY 11201, 718-625-3502, http://www.sterlingschool.com/
Ruth Arberman started the school seven years ago for dyslexic son who’s now in 11th grade. She also teaches there and runs the whole shebang. The staff is Orton Gillingham-trained in multisensory educational tactics, a very successful reading program for kids with dyslexia and other language-based learning disabilities. The first time I called, Ruth spoke to me for an hour or more. She's a dynamo, full of information, extremely knowledgeable and very willing to help anyone who has a child with LD's. The school is tiny, in the ground floor of a brownstone, with less than 30 students. David was accepted here but we decided to go with a larger school with more on-site amenities (like OT, a gym). It was a difficult decision because Ruth is such an incredible woman.

And finally, David's school:
The Mary McDowell Center for Learning, 20 Bergen Street (lower elementary), 135 Summit Street (middle school), 23 Sidney Place (upper school), Brooklyn, NY, 11201, 718-625-3939- main number, Susan Krim, admissions. http://marymcdowell.org/
An independent Friends school for children with learning disabilities, has a little more than 200 students total in grades pre-k to 10 (they are adding a grade a year in high school, so in 2013 they will have 12 grades), the staff is very supportive, understanding and caring, and really wants your child to succeed. At parent-teacher conferences, the focus is on what your child does right, not what they do wrong. They follow the Quaker tenets of acceptance, community and fellowship, and also practice group moments of silence. It truly feels like family.

Important tip:
Keep a written record/tracking document with dates of meetings, what was discussed, what changes were implemented, etc., just in case you have to sue the Dept of Ed in the future. It’s more ammunition for you since they are shoddy with their record-keeping and the burden of proof rests with them, not you. In other words, they have to prove that they are providing your child with a “free and appropriate education” (their catch phrase).

Also, when a change is implemented by the Dept of Ed/your child's current school, it must be in place for 30 days to determine whether or not the new tactic is working. But hold them to the time frame (they easily lose track and often things fall between the cracks). If you’re not happy with the results, tell them so and ask for something else to be implemented.

Hang tough and be a persistent. It’s a long, hard road but well worth it in the end. Good luck!

Tuesday, February 19, 2008

Even better living through big, beige pills

There was a subtle change during the first few days of the new meds but then David quickly reverted to old ways. We then upped the dosage another 5 mg, and the difference was astounding. David received a glowing report from his teachers, was more engaged and involved, even with us. Instead of living "in his head" and having imaginary sword fights with Pokemon characters as we walked to the subway, he actually had conversations with us.

So, we seem to have reached a happy medium for now, but kids grow and change so quickly that it might not last for long. I am still keeping a diary of sorts with things people say, things he says and noting changes in eating habits. Spindly as David is, a major concern we have is the possible loss of appetite side effect. There's a marginal difference in his eating habits--say 2 pancakes in the morning instead of 3--but nothing major.

They also say these meds can affect growth and David's at the lower end of this totem pole as it is. We had experimented with not giving him the meds on weekends or during school vacation but it is a real pleasure to only have to tell him something once instead of three times, and to have him walk instead of running back and forth like a mouse in a wheel. When he skis and has to listen and pay attention to where others are, or when we travel on the train to the museum and he's flopping like a ragdoll all over the seat, I find myself wishing I'd gotten up at 7am to give him his Focalin.

Still no sign of reimbursement from the Dept of Ed and we already had to leave the deposit for next year's school. Still no sign of school bus service and I am due to have foot surgery in April and dread having to travel five days a week with a Frankenstein boot on my foot in rush hour just to escort him back and forth. We got paperwork for his yearly CSE (Committee on Special Education) asking permission to observe David in class...at PS 107. No wonder they couldn't teach him to read; they don't even know what school he's in. Although I corrected the school on the form, I still expect them to show up at the wrong school.

Friday, February 1, 2008

Better living through chemistry?

Although we tried to avoid it for about a year, David went on meds about a week ago to help lasso his impulsivity and distractability. I thought that was what all kids were like, but apparantly not. And not to that degree. To a certain extent, I felt like we'd lost, like we had no choice, like our backs were up against the wall. I had a tough night accepting it, boo-hooing and the whole bit. There's the whole unknown about how a 50 pounder will react to a stimulant like Focalin, even only 5 mg. There are a bunch of nasty side affects like loss of appetite, insomnia, even heart attacks.

So far, so good. No bad side affects, though he does seem more emotional than usual and less able to handle minor disappointments like change of menu (no pizza for dinner) and playdates that didn't materialize. There are minimal behavior changes but nothing drastic. We are getting daily reports from his teacher, who sees subtle changes, but in more challenging subjects, like reading, he seems as distractable as ever. We report to his doctor today and I have a feeling they will up the dosage. I guess he should be somewhere between a Mexican jumping bean and an extra in "One Flew Over the Cuckoo's Nest."

MMCL has been so good about this, keeping us posted, keeping an eye on him. This all happened so quickly, just 2 days after a meeting with the school psychologist, who, unlike a standard Dept of Ed school psychologist, seemed to know details of his personality intimately, even after his being in the school for only a month. David tries hard to concentrate and sit still but seems unable to. We are hoping we will find the right combo/dosage so that he'll be able to blossom, not be a zombie. I would rather have him bouncing off the walls that be comatose.

It might be my imagination, but he seems to have even more energy with these little blue pills. But maybe it's just the weirdness or exhiliration of taking a medicine when he knows he's not "sick." They make all kinds of allowances for his energy level at MMCL, just so long as he's not disturbing anyone else. He can do his work standing up. He can get up and walk around and take breaks. But apparantly, he's been laying around on the desk and doing other distracting things. We'll see.