Clouds, May 2010

Clouds, May 2010

Thursday, December 26, 2013

good grief

I do not want to talk about the reasons why parents of children with special needs often go through periods of grief. I do not want to discuss that throughout any given year there is no shortage of events which might trigger this, nor explain why the holiday season is pretty up there on the list.

I could barely begin to summarize why most holiday festivities are so challenging. But I will say when our children have anxiety this  not only translates into grief for the parents, but often guilt as well. Particularly on a day that we're just feeling drained or defeated... or maybe it's a a day when we question whether or not we're doing enough... or worse, a moment when we might even look up & ask why. No we did not deliberately, knowingly pass this unique gene to our children... but the fact is that we passed it to them. (Well, one of us did.)

Still, while there are some days that we wish life could be "normal", or at least calm (we would settle for calm), we also have days when our pride is immeasurable.

I am convinced-- & willing to admit-- that I might not even appreciate H's milestones & progress to the extent that I do, if they were achievements that we expected. Would I honestly feel the same sense of pride if they're accomplishments that kids are supposed to have?

For crying out loud I remember the first time Hayden successfully drank with a straw... as much as I will always remember the very first Random Acts of Kindness Award that he just earned. (And the straw thing might even make me more misty-eyed than the latter.)

Parenting must be one of THE most popular blog topics, but I've also noticed a trend of related themes... such as fellow parent-writers posting lists of why we are all good parents, even if our house (for example) might appear to the contrary... or our frenemies might suggest otherwise... or we don't look a damn thing like those celebrity moms when we look in our own mirror... the ones that look like they really have it together.

Then all of this made me wonder... perhaps someone ought to point out why you just might wish you had a kid with special needs like mine.

I mean that sincerely, not sarcastically. I can not count how many times someone has said something along the lines of... I don't know how you do it, or I give you a lot of credit...

We do this parenting thing because we are Hayden's parents. That's how. I do not deserve any extra credit, but here's why you might actually envy me:

1. My kid might have behavioral challenges like you have never seen in your life, HOWEVER, he literally wakes up in a great mood almost every single day. The first thing he says to me when I walk in his room is, "Good Morning".

2. Yes, by the way, 99% of the time Hayden patiently stays in his room after he wakes up... until one of us comes to get him.

3. An advantage to having a child who needs assistance with most self-help skills is that as a parent, we always feel needed.

4. I am so over the idea of my kid taking a regular, full-size yellow bus to school. You would be too if your kid was practically chauffeured door-to-door. Having a peace of mind is quite a tolerable side effect to having an IEP.

5. Oh, I'm sorry... what is an IEP? Well it might not stand for Ivy-Leage-Bound Exceptional Pupil but it is the law. Hayden's Individualized Education Plan is a thick-ass document which essentially specifies, & protects, everything Hayden needs in his learning environment.

6.  Between his Aides, teachers, therapists, & so forth... my guy practically has his own personal army of superheroes. They are my sanity.

7. Do you know how many neuro-typical children do not even answer one thing they did at school during an entire week, let alone a single day? Well my kid might not put pen-to-paper but he does come home with a Parent-Teacher communication journal, & we exchange updates on a daily basis

8. Does Hayden understand how much things cost? No. Does he appreciate an inexpensive gift any less than an expensive one? Never.

9. Yes Hayden is different. But with that, he's an interesting topic of conversation. People want to get to know him, they like him, & they remember him.

10. At the end of the day, regardless what kind of day it was, Hayden truly loves us unconditionally.


Sunday, December 8, 2013


About a month ago we had our first snowfall out here in Jersey-- except it was more like a dusting than a fall.

Tonight it snowed for the second time this season & although it's once again barely a measurable amount, it is thicker. So when you look outside, especially if you're only 8, it looks impressive. Everything has a nice even coat of white.

H of course could not get out there fast enough & only wanted to shovel. At first we said no because it's very cold, it was actually still snowing, & also I was trying to cook dinner.

But as soon as the meal was at the point that I could safely step away from the stove, I told him we could go outside for 10 minutes (famous last words). Dan brought him out, got the shovels, & then I joined them.

Hayden was very happy to be shoveling. And I will say that just by pushing it along the road, he actually accumulated enough snow that the shovel had a full scoop.
He wanted me to take pictures so I did (even though they were blurry because it was night time & it was still snowing).

I watched him sort of weave the shovel all over the place & make a winding-patterned path. But he is such a good little helper when he wants to be... & he looked so cute in his bright green snow hat... my little smiling snow angel...

Until it was time to come inside & he would not listen. No more angel. Just Hayden.

Anyway, fast-forward to when we ran out of threats & he finally got cold enough (I guess) that he came inside on his own. After we calmed down I showed him the pictures I took. He was enjoying this until all of a sudden he sees a tiny thumbnail ad on the side of the computer screen, for a Sears Craftsman something-or-other. So I went to the site so we could look at the tools. He noticed a workbench & said he wants the "table" for his shed but I told him it's too expensive. He begged anyway & I told him I do not have the money to spend on that.

So then he answers, "Santa does! Tell him."

He put emphasis on "him" as if I should know better. And just like that he was my innocent little angel again & all stubbornness from the hour earlier was forgotten.

From his perspective he had an excellent point (the poor guy) but I also do not have practice answering these types of questions... because my parents never had to answer mine. When I was a kid there was absolutely no mistaking where our Chanukah presents came from, & there was no jolly old bearded man flying around the world & dropping them down our (imaginary) chimney. Everything we got was a result of Mom & Dad going to the store & all of us knew this.

In this house we do have a fireplace so that part isn't an issue, but I still needed to answer Hayden about Santa's budget. So I told him that Santa already spent a fair amount of money on him & he will see everything in a couple of weeks. (I think H got a little confused because I started to decorate the house this weekend, & perhaps this made him think the big day is much closer.)

We made a Christmas countdown calendar & stuck it on the fridge-- at the end of each day, a snowflake sticker marks that we are one box closer to the square with the evergreen tree.