April 3, 2012 by Marj Hatzell
Just like everything else in life, autism can have its ups and downs. You know I don’t like to sugar coat things. Life ain’t all tea and cakes, yo. No one’s life is. And if you believe that someone can live that mythical perfect life I’ve got a fabulous business transaction from Nigeria for you.
Now, some people think autism families have more downs than up but LEMMEE TELL YA SOMETHIN’. BEYONCE IS THE GREATEST ARTIST OF ALL TIME. OF. ALL. TIME.
Ahem. I mean. That is…errr.
So we have our ups and downs but to me? The downs make the ups better.You know, kinda like without darkness there would be no light? It kinda gives us perspective? Sure, there’s plenty we struggle with. Like holes in the walls, having to rip up floors, bleach stains on carpet, running away, biting, medical issues…I could go on and on. But when there’s an ‘”up?”
Life couldn’t be sweeter.
It’s no secret. The last few weeks…well, the last few months have been one Aitch-EE-double-hockey-sticks of a roller coaster. It seems as though there have been more challenges than triumphs. I’m still recovering from the sudden/not-so-sudden death of my father and juggling everything left in its wake. Bugaboo has had major personality changes and hasn’t moved in weeks, let alone sleep. Bug Boy has been struggling more with OCD this year than I’ve ever seen and his anxiety is through the roof. There are many nights I feel as though I’m a total failure as a parent and when I finally get them to sleep (if they sleep) I am reduced to tears. There are some days I’m all, “Husband who? Oh right! I need to pay attention to him!” And the dogs. And the house… I’m weary, y’all. Weary. It’s the only word I can find that comes close to describing the exhaustion and sadness I have been feeling. And it’s not just S.A.D. I’m actually doing well handling that. For once.
I was riding in the car the other day with the boys and Bugaboo was singing to himself. It’s the first time in weeks I heard his sweet voice, other than shrieking and screaming. He hums his favorite music (Star Wars, Magic Flute, Hot Cross Buns) over and over. Or did, anyway. But that day…he hummed. I haven’t heard it in weeks. Then he babbled. He’ll “talk” to himself in his own little language and then snicker. It’s adorable. And he did it that day.
And tears welled up in my eyes. I was so happy to hear it. And to think, sometimes I shush him when he makes too much noise! BAD MOMMY! BAAAAAAD!
Then yesterday I got him out shopping for the first time in weeks. Now, Bugaboo LOVED to shop. He loves the big red bullseye store. He LOVES home improvement stores and Swedish Furniture Stores.
But not lately.
Yesterday? He was happy as a clam to see that red-dominant store. I pushed it, though, when I tried to return to get a prescription and he wouldn’t get out of the car. But! He went in the first time. AND ventured outside onto the patio for a few minutes that afternoon. AND has been eating. Not just eating strings and paper! FOOD! He’s sleeping better, too. I realized the boys have been slooooowly improving since we visited our new specialist and tweaked their meds. The med tweaking will take a few weeks, since you can’t just say, “NO MORE FOR YOU!” and then let them go from zero to sixty in twenty seconds or less. Because that would be bad, yo. Anyways, I realized we were making progress for the first time in weeks. Although he still hovers by the couch, Bugaboo has been sleeping and sleeping in his own bed! That’s progress! And taking showers and going upstairs without prompting! The old Bugaboo is on his way back. I missed my happy, smiling, carefree boys.
Then this morning? Bugaboo smiled. And this kid has a million dollar smile, y’all. I missed his smile so much. And it warmed my heart so.
That smile reminds me that I have a good life. Sure, we have our ups and downs. We’ll face many more challenges and there are going to be some days that will downright suck. But that smile right there? That’s what keeps me going. It recharges my batteries. It erases the pain of the bad days. And it fills me with hope. And dammit, I’m going to hope. Through the sh*ttiest of sh*tty days I’m going to have hope for a good future for my kids.