I was asked to (or have the honor to) blog about what I want in 2013. I was given the freedom to write about anything I wanted... funny, long, short, serious, autism related,whatever. So, I farted around for a couple of days not getting anything done really, stressing myself out not getting my assignment done when it hit me...
2012 has been a wild ride for the boy. We watched our first "major" regression in Jack's progress, and it scared the shit out of us. It lead us to one of those "put up or shut up" points with the school. And he put up. Things have been going better and better every day. We're not popping the champagne yet, as we want to make sure he gets through the transition after winter break, but it's looking great. We're spending the entire day in class now. We're completing assignments and instruction within the allotted time. We're performing at general ed levels... even excelling at times.
Then, we'll have one of those out of the blue aggressive/mysterious/non-compliant/regressive behavior therapy sessions. They always remind me of the same thing. We are not done. Our work will never be done. No parent's is.
But I have some great things going for me.
In 2013 (and beyond) I will try to:
Accept at long last that my child is autistic. He will always require extra attention. Celebrate his successes and not dwell on his failures
Accept that children aren't perfect and parenting never ends. Celebrate all of our children's successes and don't dwell on their failures (or our own).
Accept that I have an amazing support team. A support team that knows what they are doing and truly have the best interests of my child at heart. They do... all of them.
Accept that I have some amazing friends and family. Friends and family that know what they are doing and truly have my best interests at heart... and want to help.
Accept (and mostly) that I have an amazing wife who cares about the boy even more than I do. Additionally, she cares about me even more than I do. And she does it all while working a full-time job that allows us to have one parent home with the child a luxury I, embarrassingly, often overlook. She is the one I take advantage of most, but should the least. I need to accept that she is amazing and thank her more often.
Finally, Accept that I have an incredible son. He can do amazing things... and I need to remind him of that more often.
In 2013 I would like to be able to accept things better. I should start now.
Jack, you are an amazing child. I love how hard you work. I love your sense of humor. I love your creativity. Things aren't always perfect, my boy.
But I accept them.
You are good.
Thursday, December 20, 2012
There is a profound sadness in our collective soul. From this sadness comes hatred, accusations, assumptions, and blame.
And the inevitable "if onlys"...
If only he had a smaller magazine.
If only he had a knife.
If only the teachers were armed.
If only the school was locked.
If only he didn't kill his mother.
If only he didn't have Aspergers.
If only he wasn't insane.
If only we locked up the mentally unstable.
If only he had enough money to buy medication.
If only he took his medication.
If only his medication didn't have side effects.
If only this had happened in an inner-city.
If only everyone paid more taxes.
If only everyone paid less taxes.
If only we had national health care.
If only he had been a responsible gun owner.
If only he went to the police station instead of a school.
If only he couldn't drive to get there.
If only it was a high school.
If only he was still a minor.
If only his parents hadn't divorced.
If only he didn't play video games.
If only he didn't watch TV.
If only God was allowed in schools.
If only God wasn't allowed in schools.
If only he hadn't killed 1st graders.
26 "if onlys". One for each of the victims killed in Newtown.
And none of them are right or wrong.
I am not educated enough, clever enough, or powerful enough to tell you what the right answer is to "why did this happen?"
And neither are you.
What happened in Newtown is a tragedy. A tragedy that strikes me like no other because I have a first grade son, with autism, in our schools, that I want to protect. I want to do everything within my power to make sure this can never happen again. But, as the ironic song that titles this post suggests, it's not that simple. I am willing to take some time and listen to both sides of the arguments on gun control, health care, mental health services, god in schools, violence in the media, school safety, insanity, broken homes, taxes, genetics, prescription drugs, Autism, and atrocity.
How can we think about the unthinkable? How can we justify the unjustifiable? How can we explain the inexplicable? How can we listen to what can not be said? There are 26 less people to answer those questions now... most of them children.
Children for fuck's sake.
I've been trying to write something this entire week about Newtown. However, every time I try I'm just simply overtaken with a profound sadness. I don't live in Connecticut, but I am the father of every one of those souls that were taken from me. We all are.
And it's okay to not have the answers yet.
It's okay to simply be sad.
Thank you for reading this, truly.
Thursday, December 6, 2012
Something has been happening on the walk home from school recently. Something, perhaps, even beautiful. There is an apartment complex with one of those cool "walk-up" entrances (cool to the boy at least). It's become routine for Jack to check that gate every day. Annoying, but harmless, so I concede. About two weeks ago, something changed about those stairs and that gate.
There were people sitting on them.
So, Jack told them to move (of course he did), and "Jennifer" asked if she could have a hug before she moved. My little sensory-seeker happily obliged. Jennifer squeezed him tightly and kissed him for a minute, telling her how much she loved him. Jack couldn't have loved it more. After a minute, "Linda", the other adult, said "it was time to let him go". Jennifer is a developmentally disabled adult. Linda is her nurse/therapist/aide. So Jack hugged her good-bye and we hurried home, smiles on both of our faces.
Over the next week, Jennifer was there every day after school. She often has her alphabet flash cards that she shares with Jack. She's insistent that Jack learn the Spanish words for "car, umbrella, ice cream, and apple". She lauds his intellect and smothers him with attention.
A few days ago, Linda (the nurse) simply blurted something out in Spanish (I speak Spanish). "Su hijo es diferente, no"?
And that question floated in the air unanswered for a moment.
I did my best to explain that Jack is autistic in Spanish. She is an aide or a nurse or some sort of caretaker, so she already knew. Linda went on about how smart he was, how cute he was, and all the usual nice things we say. She said he must have a lot of friends. He does, but not really at school. Everyone is nice to him, but he doesn't reach out to his peers much (he's doing better, but that's a different post).
Jennifer (who I didn't realize was listening to us, or spoke Spanish for that matter), chimed in that Jack could be her friend. She said she loved him. Jack had been showing Jennifer the latest homes for sale in the newest edition of the "Call Maya" Real Estate ad from the corner rack, and he asked "why"?
And then Jennifer answered.
"Because I love kids. You're fun. All the other kids are scared of me. When I was three I got hit by a car and it made me kind of dumb. The other kids run away from me."
Again there was silence for a moment.
Jack pointed to an ad in his magazine and said "this says In Escrow".
And her disability was never mentioned again. And I was touched. For two reasons. First, Jack didn't notice or care about her disability. He doesn't see it. He doesn't fear it. He just likes the friend.
In a bigger picture, however, I got to thinking about Jennifer. There are several great autistic adult writers/bloggers/advocates out there. How often do we listen? Jennifer told me her story, and it was tragic. It was hers, though. How often do we listen to grocery store clerk in her thirties that works hard, rarely smiles, avoids eye-contact, and clutches her "Hello Kitty" backpack. What's her story? Or the young man that my wife insists is extremely handsome that we've never heard speak a word. What's his story?
I think it's time to ask.
I am embarrassed that I never have. I have always been overly nice and patient with developmentally disabled children and adults... even more so since my son was diagnosed.
But it took a six year-old to teach me to listen.
And listen we should. You might just discover something beautiful.