Friday, December 16, 2011

Everything You Want

I feel like ranting tonight. There are times when it's necessary. Being the parent of a child with autism is in turns scary, awesome, amazing and heartbreaking. I will admit that by autism community standards, I'm one of the "lucky ones": my son is verbal, he can function on his own in school for the most part, he can do things most autistic kids can't usually do.
For the most part, the autism is always there but not the deciding factor in life. It doesn't control him. Usually.
The past few weeks have been incredibly challenging for our family, especially for my son, who can't always express what's going on in his head or heart. The emotional roller coaster we've been on has been traumatic for me, let alone him.
Autistic kiddos can have a tic that they may use as a self stimulating behavior (stims). It's a way to calm or soothe themselves. When little man was younger, he flapped his hands like a bird. Then it was pulling his one shoulder up so he looked like Quasimodo. Currently it alternating between shaking his head and pulling his nose up compulsively. He doesn't even realize he's doing it, which can be quite maddening sometimes.
Then there are the moods. For the most part, my kid is happy. Complete and total bliss 98% of the time. However that means 2% of the time it can, pardon the French, suck big time. When these dark clouds move in, its not listening and tantrums. We fight over homework. We fight over going to bed and getting up in the morning. We become super picky eaters. We are obsessed with one thing and it's a compulsion. The tics are more noticeable. We don't want to do ANYTHING.
To make it worse, few people can relate. My fellow autism support group parents are all over the spectrum & I feel like I'm being petty. My friends with non autistic children don't get it, or tell me that's how boys are.
No, they are not.
My son can rage for hours, although he hasn't had one of those in a long time. He still has meltdowns and it's harder to explain them away at age 9 vs age 4. The disapproving looks people give you as your child is screaming at you in public are a stab through the heart.
These dark moods increase when he's stressed out or about to grow. Or both. It's not like we have had any stress lately...
So this past week has been an unmitigated disaster. Forgetting schoolwork. Back talk. Melt downs & attitude. Not wanting to eat anything. The sleep/wake cycle all disturbed. I'm exhausted, quite literally before I even got to work this week-with the added bonus of still recovering from surgery and the death of a dream. Mommy needs to wine.
All the "fun" stuff we were supposed to do this week didn't happen:
Cookie decorating at Sunday School
Christmas party at Youth Group on Wednesday
Neither one did we go to.
Last night we went to a kids party and he was in a "mood" so it was a brief stay.
Tonight we were going to a basketball game. The mood had endured.
I want my son to experience life so fully and have all sorts of opportunities and experiences. When the best laid plans fall through and the week is shot to heck like this past week had been, it hurts. It makes me feel like its a parenting fail. I struggle with not taking it personally, but you know what, it does hurt, and I do wind up taking it personal. When your kiddo is screaming at you and refuses comfort, it rips your heart out of your chest. When you exhausted all forms of reason and begging, that screaming at the top of your lungs is the only response you can think of in that moment, you feel like the worst mother in the world. When you can't take hearing about this weeks obsession another second and you snap because he's not listening when you say enough is enough, you feel like just total crap. When twitter is your only release because you've found a community of other moms & dads in the same boat, you at least know you are not alone.
There are days when I wish because I said so is an option.
There are days when I wish I could have that golden hour after he went to bed.
There are days when I just wish I could wave a magic wand and make it all better.
But I can't.
It's when it's dark out that I remind myself that it was because of autism we are a family.
I remind myself of all the joy and love he has brought to me.
I remind myself of all the good qualities he has.
It sustains me, because you have to deal with the rain if you want to see the rainbow.


BobbiSheahan said...

Well said! Thanks for saying it.

BeckyH_253 said...

This is exactly how I feel today. I just sent Hubby off with our 2 NT kids to see the light show at Macy's downtown. Where am I? In the living room, in tears, because our aspie guy couldn't do it today. I know he can't. Believe me, I know. But this is one of the first times (maybe *the* first?) that we've had to do separate things, particularly around the holidays. I completely get everything you're saying. You're not alone. And neither am I. And somehow, that makes it a little les painful. But like you, my friends don't get it. So glad for Twitter...I'll see you there.

Carrie said...

Wow. Amazing post. Thank you for sharing this with us.

I often find myself redefining the concept of a 'fulfilling life' for my son. However I try define it, it seems always at odds with how non-autistic people would define it. Lately, I think I've been thinking it is such a silly concept (who makes these ideas up, anyway?). Instead of living a fulfilling life, how about we just try our best to be our best each day... and that 'best' can change depending on how we are feeling on the given day. A fulfilling life seems like a lot of work trying measure up to others along with tons of pressure to do what others think you should be doing to get it right. If you spend time measuring fulfillment, you're not living. If you try your best in each moment, even the dark ones, you don't have time to measure.

I don't think I have a point. I think your post just got my mind working this morning. LOL All I know is that I see an awful lot of living in the tweets in our community and an awful lot of parents and kids trying their best. It amazes me.

I sometimes want to say "Up yours, NT society! Take your arbitrary NT ideas of life and suck it!". Especially around the holidays when we feel like we are supposed to do all this stuff in a certain way or you've failed.

MKosmicki said...

All I can add is me too, many times over. It slowly gets better, but the setbacks and battles still take it right out of you.

Tiff said...

I'm in the same boat. I hear about the car washes, and fans about 18 hours a day. And the days he has meltdowns are so hard. He not only deals with Aspbergers but dyslexia too. And I wish that my parents and friends would just understand what we are going through. They chalk it up many many times to bad parenting, him being a boy etc. There are days I just want to cry. UGH! I'm right where you are.