4 posts tagged “autism”

The Good News: According to standards, India's early intervention and ABA therapy over the past two years have resulted in remarkable improvements in her speech and sociability, and she is ready to move on to a less restrictive environment for Kindergarten in the fall. Effectively, she is no longer considered autistic.

The Bad News: According to standards, India's early intervention and ABA therapy over the past two years have resulted in remarkable improvements in her speech and sociability, and she is ready to move on to a less restrictive environment for Kindergarten in the fall. Effectively, she is now being considered a tempermental kid with a speech delay who needs more structure than a traditional classroom offers, but might not qualify for the only special ed program that actually meets her needs because she's not considered autistic anymore.

Special Education Funding

The Problem: If India doesn't get accepted into the NEST program (which is looking less and less likely with each meeting and evaluation, the most recent of which saw her scoring 4 points below the "mild autism" range that would have kept her in the running), she's looking at a CTT setting* in a regular public school. In theory, it's a great idea, but as is often the case here in NYC, the execution leaves a little something to be desired as overcrowded classes are the norm and the thought of her in a classroom with 30 other kids, even with two teachers, is a bit worrisome. It's the kind of thing that is overly dependent on the teachers involved, and while I've always believed that a good teacher and attentive parents can overcome many (not all) systemic deficiencies in a school, it's a real crapshoot here as most good teachers tend to flee the City after a few years for more money and better resources in the surrounding suburbs.

Because she still hasn't been assigned a school by the CSE yet, and the June 15th deadline has passed, we still have a shot at getting a Nickerson letter which would require the DoE to cover the costs of a private school setting that meets her needs, finding such a program will be difficult since most are either too restrictive and/or autism-specific.

Right this minute, though, we're sitting in limbo, and it's a little difficult to focus on the good news aspect of all this when the bad news looms on the horizon, threatening to blot it out completely. Nevertheless, it's what I'm clinging to, because as cyncial as I tend to be about a lot of most things, when it comes to my kids, there's always going to be a silver lining.

* Random Side Note: PS 75 is where I went to school for 4th-6th grade. If we could find a place in that neighborhood, I'd move in a second!

Jordin Sparks

** It's becoming clear to me that no matter how much I enjoy going to Shea Stadium to watch the Mets, I am apparently bad luck for them as they've lost the majority of times I've been in the stands. Sunday's Subway Series finale was particularly painful to watch, not just for the loss, but because I was literally surrounded by Yankees fans. Most of them weren't terribly obnoxious -- if anything, Mets fans were worse, especially with the unnecessarily crude "Yankees suck!" chant. It's long past time to get over the inferiority complex and act like we believe we belong on the same field, you know? -- but I now understand what the handful of loyal Marlins fans must feel like whenever the Mets go down to Miami and are greeted with healthy cheers of "Let's Go Mets!"

** Speaking of the Marlins, the Pee Wee version had their first mid-week practice yesterday, and more than half of the team showed up, which was nice to see. The 20-30 minutes of hurried practice we manage to squeeze in before the game every Saturday isn't nearly enough for the individual attention many of them need at this point to progress to the next level. I gave them all progress report cards at last week's game, rating them in the fundamentals along with some specific feedback on areas they need to focus on, and we worked with those who showed up at practice on some of those things. A few of the kids have awkward swings that needed tweaking, and it was great to have 5 minutes to work with each of them individually. Isaac has a weird hitch that comes from his skinny little arms, but we adjusted his stance, pulling his back foot further away from the plate, and it made a big difference. The most confounding was one of the two girls who has trouble putting all of the little steps involved in taking a clean swing together seamlessly, causing her to appear like she's swinging in stop-motion animation, and she has a similar problem with throwing. It's going to take a lot more practice to get her straightened out, but she's a great fielder and has a great attitude about the game so I'm sure she'll be ready for the next level with enough practice.

There's no game this weekend, so we'll have one more practice session next Wednesday, and then our final two games of the season over the next two Saturdays and we'll be done.  I had no idea that I'd enjoy coaching them as much as I have, nor so willingly throw myself into the extras like the newsletter and report cards, or the baseball cards after every game, but I've been feeding off of their enthusiasm and the positive feedback I've heard from the parents and it's been a blast.  I wish the season were longer so we could keep playing through the summer. :-(

** In about 15 minutes, at 10:30am, India will be visited by someone from the ASD Nest program for observation in consideration of her being admitted for the fall. She cleared the first step, a review of her CSE records, which was probably the trickiest step since they removed the Autism classification, but the evaluations make it clear that she needs a more structured setting than General Ed or even the standard CTT setting can offer. I'm cautiously optimistic about the whole thing because she seems to perfectly fit the profile they're looking for, plus she's a girl, which is a relative rarity for ASD and I got the impression that that could work to her advantage.  Cross your fingers!

** The Walk NOW for Autism is next Sunday, and I'm at 91% of my upwards-adjusted fundraising goal of $1300. Another $120 and I'm all set.  If you haven't yet, and you're able, help me out.  If you have, thank you again!

** Did I nail American Idol or what? Jordin might end up surpassing Kelly as my favorite winner, and Blake just might end up being the most popular runnner-up yet. That duet with Doug E. Fresh was bananas!

India at Shea Stadium

Two years ago, our daughter India was diagnosed with PDD-NOS - an Autism Spectrum Disorder. After two years of intense therapy and lots of support from organizations dedicated to families of children with Autism, India still has some trouble with speech and language but no longer presents with the symptoms associated with Autism. Please help me give other children the same opportunity by supporting me as I walk with Team 352X in this year's Autism Speaks Walk Now for Autism fund-raising event.

Walk Now for Autism is the signature fundraising event of Autism Speaks and is the nation's largest Walk program dedicated to autism research. Since its inception in May 2000 we have collectively raised tens of millions of dollars to fund autism reasearch. We have come far in that time, but so much remains to be done.

I am asking you to help by supporting my fund raising efforts with a donation of any amount, from $5 to $500, or more!

Your tax-deductible gift WILL make a difference. Together we can make a difference by advancing and accelerating autism research. It is faster and easier than ever to support this great cause - you can make your donation online by simply clicking on the link at the bottom of this message. If you would prefer, you can also send your tax-deductible contribution to the address listed below. More information on Autism Speaks, its programs and autism in general can be found at their website: www.autismspeaks.org.

Remember, any amount, great or small, helps. I greatly appreciate your support and will keep you posted on my progress.

Click here to visit my personal page.
If the text above does not appear as a clickable link, you can visit the web address:
http://www.autismwalk.org/goto/glecharles

Click here to view the team page for Team 352X
If the text above does not appear as a clickable link, you can visit the web address:
http://www.autismwalk.org/site/TR?team_id=116240&pg=team&fr_id=1531&s_tafId=44606

Click here to view the company page for P. 352X
If the text above does not appear as a clickable link, you can visit the web address:
http://www.autismwalk.org/site/TR?company=P.+352X&pg=company&fr_id=1531&s_tafId=44606

Beyond Salomé and the kids' birthdays and our wedding anniversary, I'm not very good at remembering specific dates, but 5/3/2005 will always be a memorable one because that's the day India was diagnosed with autism*. "Pervasive Developmental Disorder-Not Otherwise Specified" (PDD-NOS), to be specific, the catch-all term for a laundry list of autism-related and autism-like disorders that, I think, is part of the reason for the recent explosion in autism diagnoses over the past 10 years or so.

It's been a long two years for us since the, full of emotional highs and lows, but overall, she's come a long way thanks to early intervention and the educational services she's received, and as important as anything else, Isaac, the most patient and caring brother I've ever seen or heard of in my life. He's been a brother, a friend and a teacher/mentor to her and I honestly don't think she'd have progressed half as far or as fast as she has if not for him.

This morning we had our meeting to hear what the Committee for Special Education had recommended for her for this fall as she's aging out of pre-K and into Kindergarten, and we make the move from a relatively supportive system that attempts to help as many kids as possible, to one that nickels and dimes kids and narrowly categorizes them, leaving way too many to fall between the cracks. According to her evaluation, she's within the “non autistic range of functioning” (CARS: Childhood Autism Rating Scale), but "A general education program without related services would not address India’s needs at this time." and "A special class in a community school is too restrictive at this time."

Cracks, meet India.

The good news is that she's no longer considered autistic, and honestly, I never thought she was but the diagnosis meant she got the services she probably wouldn't have otherwise if she'd simply been thought to have the speech impairment she's now labeled with. The bad news, though, is that the autistic label was the only thing that would keep her out of the general education setting they initially recommended, and allow her to go into a program more suitable to her special needs. That's the problem with standardized scores of any type, is that they're very black-and-white, and in this case, her CARS score overshadowed all of the specifics in the two evaluation reports in her file that are pretty explicit about her having special needs.

"A general education program without related services would not address India’s needs at this time."

I mean, it's right there in the report, and yet they were still recommending general ed! We argued against it and got them to change the recommendation to say that her needs can be met by a general education teacher AND a special education teacher, together, and after some discussion of our options, it's pretty clear that we're not going to find what she needs within the public school system. That means a possible court fight to get them to pay for a non-public school setting, which is exactly what we were prepared for, and even without the autism label, we have a pretty good shot at getting what we want. It helps that Salomé is a teacher now and knows the system, which should cut through the first layer of bullshit they typically throw at parents.

What started out as a rather anxious morning turned into a pleasant afternoon as we investigated one of our options -- a promising one that's actually within the public school system, and in the Bronx, but is relatively brand new and funded by NYU -- and then spent an hour walking around Arthur Avenue, the Bronx' Little Italy, talking through everything and, consciously or not, decompressing. I ate a half-dozen raw oysters at a "raw bar" counter that was set up outside one of the seafood shops (one of two doing so), and we stopped at a bakery for dessert and one of the strongest double espressos I've ever had. It's a nice little neighborhood with what looks like some good restaurants that we plan to go back and check out one of these days.

All in all, a rather big day for us in the grand scheme of things, as it represents a positive half-step forward towards figuring our plan for the next few years.

* "With autism" vs. "as autistic", as my opinion has changed greatly over these past two years. I used to think the diagnosis defined the patient, but have come to understand that it is simply one aspect of who they are. No one is "a cancer", they "have" cancer.