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.


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