Clouds, May 2010

Clouds, May 2010

Thursday, June 26, 2014


This is a long-ish one... with a lot of links... but I've fallen behind on posting Hayden-specific updates...

Aside from a recent brag post for a dear friend & her courageous, incredible book
... it seems several of my updates have been of a more serious tone lately ... the most recent is a completely sarcastic segue into a lovely complaint altogether.

Therefore, today I am sharing a long overdue breath of positive fresh air... for the most part... (doesn't that count?) :)

Last weekend we celebrated H's 9th Birthday-- I purposely kept the guest list small because I knew we would be having it at the house. Of course with all of the repairs to our home which kept getting delayed, one might think why would I do that... but it's because of those repairs that it also wasn't the best time to host his birthday elsewhere, which would cost even more money.

So in case of unfinished repairs and/or bad weather, I needed to make sure we could accommodate everyone. Hence the small guest list... which I actually still feel bad about, because Hayden is so social we only want to encourage that. Not to mention his birthday last year had a hint of a melancholy (if you will), having been right after the time of my grandmother's passing... & this year his birthday was right on the heels of something else going on with one of my nieces, which has had everyone in quite a bit of a difficult state of mind. 

I only wanted to make the day as happy & awesome as I could. His week had been busy but a good-busy... the kids had Field Day, plus two class parties, & they also had a class trip to the zoo. Although Hayden didn't quite interact as much as I had hoped with his peers, his distractions were sweet nonetheless... mainly his new sitter who joined the trip for the day (so of course he wanted to be with her, but that's a good thing), & he was equally determined to remain near another little boy in his special ed class who was having a tough time. Hayden paid little attention to the animals but he LOVED the sprinklers & he LOVED the train ride (I'll refrain from recapping the awful meltdown on the long line beforehand).

At the end of the day though, he even picked out something from the gift shop which was not a car!

Sunday, the day of his birthday, things were going well so that was good-- mother nature was definitely on our side & my dad even figured out a temporary fix for the net on the trampoline. (Of course the new net should have arrived in time, but instead it was the day after the party.) We kept the menu simple--  burgers, veggie burgers, hot dogs, chicken, corn, watermelon, blueberries, & a couple of salads.

Hayden had a lot of fun-- he doesn't stop sometimes unfortunately, even when he truly needs a break-- but it didn't really catch up with him until the last hour or so. I've always said it's as if he simply can not accept his own state of tired sometimes. This can lead to a very loud, angry Hayden & a version of himself who could not be further from his true self... & one that I hate for other children to witness. So I basically said it was cake time & then shortly after began handing out goody bags to try & wrap things up.

Party aside, I must say though, I really can not believe that I have already been a Mom for nine years. Sometimes it honestly feels like we're just getting started.

This year has been a lot of trial & error for Hayden's treatment plan-- this holds true for recent years in general, but particularly this year because we were so close. At our final progress meeting of the school year, I collected input from 2 teachers & 3 therapists.

One of the global challenges reported is that Hayden's difficult behaviors are more inconsistent & more sudden, & seem to have fewer identifying antecedents. About once every 2 to 3 weeks he will experience a truly bad day all around... doesn't sound like much... but that is excluding days where things might be tough here & there.
I guess to be expected...
I also asked the dreaded question of how these behaviors are impacting him socially-- & obviously this answer is not great but it could be a lot worse: they basically summed it up by saying that it's not so much what other kids think of Hayden, as much as it is his ability to interact back. Which can ultimately affect the aforementioned, & is inexplicably frustrating because we know he can when he's in his regular state-of-mind.

So then when we got into more specifics about his learning, I asked how he was doing when his difficulty in regulating behaviors is not getting in the way...

And they said his fine motor is better... he will often do tasks for longer periods of time (when he is able to apply himself)... he has better articulation... & he is even listening quietly for longer periods of time, when the lessons are being taught from a text book (vs hands on).

...quite awesome...

They also said that if he's absent from science, for example (one of the classes where he is with his mainstream peers), that the kids will ask where he is. They said he is generally perceived as a joyful kid & he's well-liked.

But the thing I am most proud of, because we waited years to hear that voice of his... & to learn what his many thoughts are (because it was clear there were many running through his mind)... would be his consistent improvement in expressive language.

The speech therapist-- who also bought & read that book I mentioned-- said, "Hayden is my kid that I am most proud of." She is one of the few who have been working with him since he stepped foot in that school back in 2008... & she knew him before he could barely even babble... & she has witnessed right alongside us, his phenomenal language progression.

She recently applied for the Principal position, too. I didn't realize she was applying, & it sort of sucks that she didn't get the job (but it was a pretty sought-after spot, so I get it). But the day that she had an interview with the Board, she asked if she could share a couple of letters I had written to her over the years. I was so ecstatic that I think my reply sounded like a goofy teenager but it was truly an honor.

As the school year officially came to a close, Hayden's special ed teacher sent home a framed picture of him... I remember when the photo was taken, it was the day he returned to school after the dentist ... & he was doing so well they thought something from his appointment hadn't worn off yet :) when it reality there was nothing to wear off... (who knows what his surprisingly amazing disposition was all about that afternoon... maybe being done with the dentist?)...

But sensing the gift was something breakable I carefully removed the tissue paper labeled "Mom & Dad", & then saw our present:

The frame is certainly a great accessory to that big, cheesy grin. Isn't it?

Summer school starts on Monday & I'm sure I'll have plenty of new stuff to vent about, but for now... a little bit of sonshine. (I should paint over the "u", huh?)


Tuesday, June 24, 2014


How psyched is everyone that summer has finally arrived! RIGHT? WOO HOO!

We've kicked that Polar Vortex to the curb, swapped our boots for sandals, & reached for the sunglasses... 

Kids are happily following in their parent's lead, as they skipped through their final days of school... 


Well, not in my world.

For starters, Hayden attends a much-needed summer school program called ESY (Extended School Year). But (a) it's only a couple hours in the morning, (b) the staff is different than the people who work with him during the regular school year, (c) there are far fewer kids (as most students do not need ESY), & last but not least... (d) it's summer school. BLAH.

Basically what this boils down to is an interruption in our day. We rush out the door & a few hours later he's home-- even earlier than a typical half day or early dismissal day.

By about 1pm he will have eaten breakfast, gone to school, come home from school, eaten lunch, & is ready to be entertained for the next 7 hours.

We enlist the help of a sitter until I can get home from work, but I am still on-the-clock when I return. This is hardly the perfect recipe for providing my child all of the attention & fulfillment he needs & deserves. Furthermore, most days of the week we lack a Plan B.

But if you think that sounds fantastic, wait until I tell you what happens after six weeks... no more summer school. So, we bribe the sitter for even more hours to cover even larger gaps of time.

Over the years, as Hayden has aged in & out of various programs-- all the while surrounding his ESY schedule-- Hayden's summers have included: home services for therapy, daycare, a few weeks of camp (which he attended with his sitter as his "Shadow Counselor"), or, services through a local special needs agency... to name a few.

Each option had its own issues, if you will, where certain aspects were great & certain things were not working for him (or us).

Nothing was just right.

Yes this summer there may be moments of picture-worthy joy, or carefree glimpses on lemonade days, with my sun-kissed kid frolicking around near the water's edge, waving a theoretic roasted marshmallow on a stick, while his father is relaxing nearby in an Adirondack chair... but Hayden truthfully only drinks water & is not likely to roast a marshmallow-- much less eat one-- & we're really not down by the lake much because during the week it's too difficult with our work schedules, & the weekends are usually busy with other family stuff.

Quite honestly, with the reduced school schedule & loose daily structure, summer's for us are kind of stressful. When that final school bell rings... it's as if I can hear it in my head... with a creepy inner voice... have fun for the next couple of months!

Maybe I should start counting how many times I am scared half to death by some nasty bug I find in our house.

How psyched AM I that summer has finally arrived! RIGHT?!

If you see a bumper sticker that says, "I'd rather be fighting over homework, air-drying cable knit sweaters, or cleaning snow off my car" ... then send me one.