When we were making the video 4 Paws will use to match Riley with her service dog, it occurred to me, we don't have very many examples of the meltdowns on our own home videos. Usually, if one started, we shut the camcorder off. We needed to tend to her but also, who wants to capture that?We did receive some pretty strange looks while making our tape for 4Paws. What kind of lunatic just stands there, videotaping their child screaming? If Riley has taught us anything, it's things may not always be as they seem:
-Were we uncaring parents, getting their jollies taping their distraught child?
-Were we parents who were willing to try anything, even going out on a limb, doing a lot of work and (gulp) asking for help to see if maybe, just maybe, a service dog might benefit their little girl?
Looking through some old home videos recently I did come across one of Riley having a meltdown. She was three years old. In the video, she is bloated with a huge belly. Dark circles are under her eyes. We hadn't yet heard of special diets. We hadn't heard of bio-med treatments. We'd barely heard of autism and certianly never heard of Asperger's.
On the tape, Riley was singing and then I don't know what set her off, but she began to shriek.
In the background Todd asks, "What's wrong?"
My icy voice can be heard saying, "Just another tantrum." Then, sarcastically I added, "Each one just as charming as the last."
Watching this, hearing my tone, I cringed. We'd been to see the big guns. Some of the top neuro folks in the country told me I was making a big deal about nothing. No help. No true diagnosis would come until she was 4. A small tired part of me was believing she was just a willful child. Thank God the larger part of me didn't buy it. She'd been screaming for a year and a half at that point. It would go on for another year before we found help.
If you are in a similar place, keep looking. Don't believe there is nothing you can do to help your child. Biomedical interventions work. Find the right professionals. Get a loan if you need to. Your child's behavior is trying to tell you something.
In the video, in the middle of her meltdown, with tears streaming down her face Riley cried,
"I want to be happy!"
At three years old, she knew this was not how it was supposed to be.
"I want to be happy!"
It struck me as profound.
That's all any of us want, when we have our little tantrums. When the toilet paper hasn't been replaced. When the guy in traffic cuts us off. When we just want to type without being interrupted, for once.
I don't claim to always be happy, but I do know we got our child on the right track by focusing more on where we were going and less on where we had been. More on those who could help. Less on the rat bastards (not that I'm bitter) who didn't.
I want to be happy.
Some would say I abandoned *the cause* when I stopped involving myself in the political battles that swirl around autism. But things aren't always as they seem. I actually think more people talk to me about autism now, than when I was all fired up. I am happy to share what's worked for Riley and my opinions on autism with anyone who asks. Only if they ask.
There were moments I used to think Riley's screaming was a curse I was going to have to bear for at least the next 20 years, and then God knows what would happen. Go ahead and judge me, I don't give a rip. You listen to your kid shriek for 2 1/2 years and get back to me, okay? It turns out this child and everything about her has been the opposite of a curse. She's been the most precious gift.
Lesson one may have been "things aren't always as they seem." What I've also learned from having this beautiful child in my life is this: Even if we're not there yet, even if we can't see it, we always have the choice to turn in the direction of the happiness we want to feel, and keep stepping.

18 comments:
This made me cry. "I want to be happy," will stick with me for a long time. Thank you.
Lovely post Michelle. I'm totally with you on the anti-political life. Always amazed me how folks can get so caught up in the fight when they've got a special kid who may need lots of things but would really benefit from some attention (as hard as it may be to give.)
Said it before ... Riley's a lucky little kid. (Seth too.)
I don't mean to imply that those who are in the political fight are wrong. We all have our own way of doing things and none are better or worse. Different approaches, all valid.
"Even if we're not there yet, even if we can't see it, we always have the choice to turn in the direction of the happiness we want to feel, and keep stepping."
one foot in front of the other. wise words, my lady.
"Things aren't always what they seem" is so true for my boys-- on good days and bad. Maybe I should print that out on a card and hand them out.
I was just about to comment the other night about how far Riley has come because of all of the time you and Todd have put into Riley's heart, body and mind. Not to mention Riley's endless courage. Someone came to my door and I never finished my remark but this post is much better place to put it! Biomedical treatment has addressed so many of my son's physical and mental issues- but none of it has been quick or easy. Your response to Todd in the video is sadly familiar. It is so good that Riley can experience her own happiness now. It helps to read about your journey and to remember to keep going forward. I also think
political activism can happen in so many ways. Mine is to quietly tell Adam's story to the people who have questions and like you, I find that now that edge has been worn of off my anger they can hear me.
Beautifully said. I want to be happy.
We do not know how we would react or what we would do if given another persons problems.
Everyone should practice walking a mile in the others shoes.
What you have done for your child is remarkable and a tremendous example. There is a very useful book in your story. I hope you get to write it.
I want to be happy.
Out of the mouth's of babes.
I'm always struck by how fearlessly honest your writing is.
I will say that I think you made the right decision to move beyond the political phase. I've seen too many people who get consumed by some form of social fight and hold on to unhappiness, because without it, the fight can't continue.
Political fights just don't mesh with "I want to be happy."
Such wisdom - I learn so much from you. And Riley.
I believe that the desire to fight a wrong politically can co-exist with the desire for happiness. The political fight against some of the causes of autism is an unselfish fight, fought for innocent children. I don't want the type of happiness which erases the passion from compassion. I am not going to join any protests anytime soon. I'm more of a grass roots,'change comes through relationships' kind of gal, but I respect the passion and the determination of those who fight loudly, and I think that it is a mistake to assume that the pursuit of happiness is exclusive to those who don't.
Well put Naomi! We all do what we can in a way that feels right to each of us. I don't begrudge anyone else their feelings or their way. We all love the kids.
Wow, again your words are so personal to you, and so timely to readers. At least to me.
I have been thinking about a post I want to write, because I want to delve into this part of myself. This part of myself that gets so mad and worked up about certain things. But like sweet Riley, and you, I also just want to be happy!
*sigh*
You shine a light on the path, my friend. Thanks.
This post is good. All of it.
:)
"I just want to be happy." I wish I had known that when I was three.
Thank God for those who take the political path. Thank God that we are not all built that way.
Incredibly wonderful post. Thank you.
"I want to be happy"...your tone. HT's question.
Confusion on so many levels.
I feel for that family.
Sigh.
When we know better, we do better.
Don't beat yourself up, honey. We've all been there.
And I love the direction the New Family has gone in.
In this photo, Riley looks so much like you it's almost startling.
She gets her physical beauty from you, of course. She has learned an attitude of beauty from you and HT, too. Quite a combination.
If only we all could remember "I want to be happy," and follow that desire to right action. (sigh)
You know what you are ALWAYS doing right? You just keep searching. You needed a diagnosis, and once you finally got one, you didn't stop there. You just kept looking for what would help Riley.
You are amazing. You really are. Your whole family is.
love.
love.
I love this post, and I love your attitude. About Riley, about Asperger's, and about parenting.
Thanks for sharing.
she has grown so much and come so far- what an amazing job you all have done.
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