Tuesday, March 30, 2010

I'm much better now

So yesterday was not one of my better days. But what a difference an evening of Challenger League bowling, time with Tina, a good night's sleep and an hour of heavy lifting at the gym can do. Body and soul are recharged.

I don't get down on my situation very often, but I attribute yesterday's malaise to the ARD meeting. The meeting itself went well, the entire staff is on Amanda's side and do right by us. But even after a great party there is the residual hangover. yesterday was just that.

Monday, March 29, 2010

Post ARD

We had her ARD meeting last week. There were several test results we had to review, the least favorite being the IQ test. While the score was in line with what she has tested to in the past, it is still so painful to see on paper. All of what it means was laid before me, how our world will hardly deviate from its course, how I must continue to take care of myself so I can take care of my child for years after other parents are complaining of the empty nest. How I will never have grandchildren to spoil or will have to pick my own nursing home and all the things in between.

Yes, I joke that I am fortunate that I don't have to save for college or a wedding, but that is only the price of "normal." Sometimes I hate that has been denied her and me.

To quote the recently honored Dennis Hopper, "This is some heavy shit man." I think he has said that in most of his movies.

I was reading one of my favorite blogs, To The Max, and posted on it was the Parents Bill of Rights comprised by its author. I'm going to repost it here with a few coments, I agree with so much of it:

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are. - Tina says I have murder eyes that shield me from most people. She says she wants them too.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever. - It's great your child is so amazing, pardon me while I drag mine out of the store during a meltdown

* We have a right to wonder “What if…” every so often. - YES WE DO and that is just fine

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun. - She is an awesome playmate, channelling my inner child fixes most things

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout. - OK, I don't drink light wine, but believe me, the white cup in my hand doesn't have apple juice in it.

* We have a right to react to people’s ignorance in whatever way we feel necessary. - that would be the murder eyes thing again, coupled with my smart ass attitude I don't suffer repeat offenders

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child. - A-MAN!

* We have a right to go through the grieving process and realize we may never quite be "over it." - it's not for ourselves that parent's grieve

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us. - she is a great sweeper and laundry folder

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio. - or what ever

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things. - I've done that

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things. - tough days just happen

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs. - as you can tell at this moment, sometimes it's just plain hard

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it." - it's as simple as this, failure is not an option

* We have a right to wish that sometimes things could be easier. - yes we do

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.