Clouds, May 2010

Clouds, May 2010

Wednesday, September 4, 2013

good yom tov & good apples

I went to one of those big chain office stores the other day, to get school supplies for Hayden. Specifically I was fulfilling the list sent from his 2nd Grade teacher.

his is the first year that we got one of those lists & I can honestly remember every item on it without even looking: 3 different color-specific folders, plus 1 of our own choosing for Spanish, a composition notebook, 2 pencils, 3 highlighters, wet-erase markers, chalk, scissors, 1 large book cover, 1 small book cover, & a glue stick. These are the things they need for Grade 2. 

(Oh, & he has Science this year too!)

Anyway, the place was way more crowded than I have ever seen it-- kind of like a home improvement store the day before a blizzard is predicted to hit. It seemed like every customer in there had a minimum of three children in tow, with each child holding their own teacher-supplied list of necessities. If they had all been plucked directly from the store & placed anywhere outside, it would have looked like a scavenger hunt.

I took a shortcut by interrupting a young sales person & asking for directions to this & that aisle, so I could get the heck out of there as quickly as possible. He managed to escape me when I still had one item to go, so I summoned an older woman from her ladder as she was adding stock to those higher shelves... the ones far above the reach of the ducks on the ground, where there is always something you need & never anyone around to get it down for you.

I almost bought whatever she was putting up there just for the sake of convenience... it reminded me of passing an empty deli department when you don't even need to take a number, & consequently find yourself asking for a half pound of low sodium turkey which you already have at home. But the oddly enthusiastic meat cutter in white garb & enticing idea of not having to wait in any line is too tempting to pass up. (I sort of wonder why those people are always so chipper anyway, but I imagine that guiding a deli slicer could potentially feel powerful & almost fun, challenging yourself to see just how thin you can shave the cheese. Better than cutting it, anyway.) 

Well, I'm trying to lighten the air but I actually have a pretty significant observation to share.

I recently had a heated conversation via email, with a woman from an agency that services people with special needs of all ages-- including geriatrics. They pair up therapists & home care specialists with clients seeking assistance. They are linked with various other agencies as well, to expand their network of resources.

We worked together this summer to incorporate childcare services, along with H's regular sitter, who actually has other commitments & can not give us all of her time (how dare she).

For the most part things went well this summer. But upon these home care services coming to a close as the new school year begins, the woman from the agency was now encouraging us to be paired with a therapist. She is a strong advocate & I suppose she was only trying to offer her professional opinion.

However, very long story short, we already learned through a lot of investigating, advocating, etc... insurance will not cover these services. And the fact is, they are beyond our resources to pay out of pocket.

That being said, the truth is during the regular school year Hayden's curriculum is not exactly lacking. During the summer months his program is significantly reduced, but for the rest of the year... he has at least 100% support if not more.

But this woman was persistent & began to make assumptions. She told me that by sitting & waiting we were stunting Hayden's growth, & that his school district is not equipped to handle his needs. This is just the tip of the iceberg as far as her "expert" opinion. She even judged some of Hayden's specific accomplishments, as being less progress than they should be, for an 8 year old. And no, unfortunately I am not kidding.

So here I am doing all this preparation for H's Second Grade year, & I foolishly start thinking about what she said & pretty soon I get myself in a funk. Because the reality is his day will not be the same as the other Second Graders. He will have all the same supplies & he will be included for some things, but not others. He will fulfill most of his academics in a different setting that is more appropriate for him... the pace, the teacher-student ratio, the material, etc. 

Even though I believe Hayden's school schedule has a truly beneficial balance for his personal growth, I do occasionally second-guess. Because as the kids grow up-- yes H continues to make progress-- but the developmental gap between him & his peers only widens. 

But then I started to really sit & think about how far we have come... how far Hayden has come...

And I sat down & responded to this woman. Here is just some of what I had to say. I have omitted portions of personal information, but I also borrowed a lot of her own verbiage & threw it right back:

"I have been advocating for the best possible services & curriculum for Hayden, literally since the first month we had his diagnosis in November of 2006. Never for one moment am I in any sort of "sit & wait" mode, regardless how difficult something is to achieve.

In addition to all of the services that my husband & I were personally able to obtain for Hayden-- (beginning with tripling his Early Intervention hours, & through preschool when we customized an all-day program for him which didn't even previously exist, & now during his elementary school years to appropriately balance his academics with his social needs--) we have also supplemented countless hours of private therapies over the years.

This has been a tireless journey that I can not begin to summarize in a few sentences. I know in my heart of hearts that he is being challenged to his ability of achievement. From our point of view... I will say the school district has proven to be equipped to fully educate a child with the type of needs Hayden has. Budget cuts pose a continuous challenge, but there is never a time when my voice is not heard or my concerns are not addressed.

At one point we actually had a specialist from the FX clinic in NY come & observe Hayden at school. Not so much because we had problems, but rather we wanted reassurance that we had an appropriate program in place. And truthfully, his team was equally eager for the input. Following the visit, this doctor who has 30+ years working with kids with fragile x... said that the people who work with Hayden 'renewed her faith in public education'. (The fact is, many of the people she met that day are still a part of his team... the same therapists, & so forth.)

I have never felt we were stunting Hayden's accomplishments/ achievements.... His needs are always our primary concern. I know whatever we line up for Hayden in the future, he will be in good hands."

She has not yet replied.

Meanwhile, I was at H's school today for my 2nd annual FX talk with faculty. (You know, because my decisions are clearly stunting Hayden's growth.) But anyway, following my brief presentation, a few minutes of mingling, & a couple of side conversations... I learned some pretty jaw-dropping news about staffing & other details for this year (i.e. tomorrow).

Despite all of the changes that H will surely notice, I was simultaneously reassured (believe it or not). There are definitely some kids who will have way more adjustments to deal with, than he.

The quiet way some of the teachers responded to my eyebrow-raising how-can-that-be comments, & all of the how-can-they-do-that rhetorical questions, strongly demonstrated the difference between students whose parents are very involved, & students whose parents are not as involved.

Certain tight-lipped teachers who did little more than nod, offered strong (albeit subtle) suggestions... just how influential parental involvement really is.

Not that I didn't begin suspecting this some 5 years ago when H first entered the school system (for pre-K)... & I literally threw myself into the thick of it  (at the very least to ease my own anxiety & at the very most to make a difference)... but wow... today offered some concrete proof. 

This evening marked the beginning of Rosh Hashanah, which is the Jewish New Year. Ten days following Rosh Hashanah or the Day of Judgement, is Yom Kippur-- the Day of Atonement. It is believed that G-d opens the Book of Life on Rosh Hashanah, & the 10 days between Rosh Hashanah & Yom Kippur are viewed as an opportunity for Jews to repent, to ensure a good fate. During Rosh Hashanah it is a mitzvah to hear the shofar or ram's horn blown, as a literal & spiritual "call" for this special time of year.

There is not much of a Jewish population where we live, & as a matter of fact the first day of school is on Rosh Hashanah... something that never would've happened in the township where I grew up.

But on this day I should never discount the fact that the incredible
people on H's team are truly good apples, & they are always looking out for my guy. Perhaps even more than I realized.

I brought snack packs of sliced apples to the meeting today... sort of a dual-meaning gesture: apples for the teachers & apples for Rosh Hashanah.

H's teacher is bringing in honey tomorrow to share the sweet New Year treat with the kids, on their first day of the new school year.


So what can I say... do I still have Second-Grade anxiety?
But Second-Grade hope? Yes, that too.

Wishing a Good Yom Tov, or Good Holiday, to all who observe.

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