Mom Has Her First Epiphany

There's a lot to be anxious about these days, what with August looming and the end of our Early Intervention years. I'm in the midst of completing IEP paperwork, so this is utmost in my mind tonight. There are diagnoses and new terms being bandied about. There is talk that a little yellow school bus (well, two) will be pulling up to our house and that I will actually let my boys board them without me, off to a pretty lengthy school day. Lengthy for, hello, a three-year-old. I am also told that they will come to love this part of their day, the school bus pulling up, the very RIDE itself. I can't fathom their days away from me for that long. If I dwell and try to visualize what our typical day will look like (I gently wake them up, feed them a hearty breakfast, help them get dressed, beep-beep, up on the bus, wave goodbye with a tear in my eye...mom all alone...? mom all alone?!), I feel something akin to both panic and glee. How will they manage without their mother? What will I do with all this time!

Spring Has Sprung

What a glorious weekend. Just when you think you'll never see the sun shine again...pow! Many of my friends and family are Hokies, but you didn't have to be a Hokie to feel...out of sorts last week. To belong to a world where something like that could happen. To worry about your own babies growing up in these scary times. And to have autism uttered in the same breath as a tortured psychopath. Well. The sun this weekend is welcomed with glad arms. I'm grateful for all we do have today. I'm grateful for the smiles on my boys' faces the first time they saw The ELEPHANT! At the ZOO! (that's Z-O-O!). I am clinging to the memories of this glorious weekend. To sweep away some of the sadness.

I'd like to thank...

I received a lovely blog honor last week from fellow blogger Be A Good Dad.

He bestowed upon me a Thinking Blogger Award. I'm surprised how happy it made me, even if it is essentially a meme dressed up in a ballgown. For one thing, it introduced me to another parent of twins (one with autism) and you can never know too many of those. And another, his blog steered me towards even more bloggers. But the biggest thrill is, wow — there are others actually reading me.

I thank him, am humbled, and now I'd like to bestow the following five bloggers with their very own Thinking Blogger Award. Thank you for making me think.

1. Whitterer on Autism. Well, first of all, if it weren't for mcewen, I would not even know about my honor! But that is not why I award her. Mcewen is the Joan Didion of the blogosphere. So prolific, so funny, so real. And I dare say if you're an autism mom or dad you know what I mean.

2. This Mom. I love visiting This Mom's blog and reading about the Adventures of Fluffy. It's like curling up on a comfy couch with a good book. I also love going here to read about other therapies like RDI. She makes me think.

3. Mom Without A Manual. MWAM makes me think about different ways of looking at the boys' autism and is really the first one who made me go "Hmmm...biomedical therapies might help J&S."

4. Schuylers' Monster. I'm not even sure how I found this amazing blog. It is one dad's take on his daughter and living with a very rare neurological disorder. It is written with such insight, love and humor…I visit every day. So do many: he will soon be published.

5. Dooce. I am such a novice blogger that when I first started I thought a blog was a chat room (is it? I guess kind of? see...still a newbie) If we're all struggling writers, then Dooce is the one who not only got published but also got a movie deal. Five movie deals. She gets hundreds of comments. And she's hysterical.

All of this and I would just like to add that everyone on my blogroll makes me think, that's why you're there :)

Rules for participation:
1. If, and only if, you are tagged above, write a post with links to five blogs that make you think.
2. Link to this post so that people can easily find the exact origin of the meme.
3. Optional: Proudly display the 'Thinking Blogger Award' with a link to the post that you wrote.

Life on Our Spectrum

If you think of the autism spectrum as a seesaw, then I have two boys sitting at each end. By today's definition, one is "high-functioning," the other is "low-functioning". Both are quirky. I love their quirks. But one is super social, talks and engages with those around him. And one is nonverbal, stims in the corner and can't look at me. Even so, both are very loving. Both will creep up on my lap at different times of the day and the hugs each gives are precious. Did I say they are quirky? And that I love their quirks? But I wish that John could speak. I wish he didn't have to stim, even as I recognize that it's his way of self-regulating — it seems to require such energy from him. I wish that life were easier for him to process.

It should come as no surprise that in the beginning, I did not believe that Sam was on the spectrum. How could I? They are so different. John's autism shows itself daily in unusual hand movements, his inability to look at me, his fascination with light and shadow. His brother, by all accounts, is a people person who almost obsessively needs my attention and physical proximity. Eye contact has never been a problem for him. How could this child also be autistic?

Here in my home, in my family, I have the clearest proof that no two children on the spectrum look alike — even identical twins. I have, of course, come to accept Sam's diagnosis, though it's been a long road. I recognize that he has difficulty with transitions and that he is hyperlexic and scripts: his language isn't terribly functional ('though certainly adorable), and he has worse sensory issues than his brother. All this, and I'm sad to say that I often hope for a day in which John's autism looks like Sam's. If only he'd script. If only he'd sing the abc's over and over and spell everything in sight. If only he could look at me.

Does this mean I don't love John for who he is right now? No. I am amazed by him daily and by what he's absorbing from the world around him. I am in awe of his way of looking at the world. But this is a mother's wish: I want my boys, my babies, to have happy full lives. I want them to have friends who like and accept them for who they are. I am scared of the cruelty of children. I am scared of the first time that someone teases them for being different.

When the weather turned balmy a few weeks ago, we resumed our neighborhood walks. One afternoon, a group of children playing in the cul-de-sac rushed up to say hi. John whined and flapped his hands when we stopped and the "What's wrong with him? What's he doing?" hit me like pellets. Whoa, what to say to a group of 4- and 5-year-olds? How to dissipate the uneasy silence among the other neighborhood moms?

Life on our spectrum continues to have highs and lows, and some days are certainly "higher" than others. John is now getting close to 20 hours a week of therapies and has made strides in his programs. He is such an even-keeled boy, very happy most days (except when I need to go the grocery store or Target or any other place with people and noise and bright lights). Sam continues to thrive in his ASD classroom and has a great new friendship with a little girl named Lila. I love that for him.

We will turn three in four short months. I imagine that our spectrum will continue to morph and redefine itself. And thank goodness for that.

John's Artistry

When he first started drawing, John was tentative. He held his crayons gingerly and made slow, sweeping arcs with his left hand. And if he chose yellow or pink, the arcs were so light you could barely make them out on the paper. These faint half-circles were a constant as he became more comfortable, more sure of himself. His wrists are weak — he still has a hard time holding a spoon or fork — but the crayon is now at home in his small fingers and he tends to alternate between left and right hands (although he clearly prefers his left). I'm amazed he stays completely on the paper and love watching him study his art looking for empty white holes to fill. The other day, I watched him master a new technique: rapid stacatto movements with the end of the crayon to make a spray of dots.



He may be non-verbal, but he impresses me every day.

Sam, The Computer Man

Well, I suppose it was only a matter of time before Sam discovered the computer. His vocabulary is so extensive now that he can recite, verbatim, all of his favorite Wiggles episodes. The spelling continues, but we've tried to redirect him to doing so on the fridge or on his easel board. (For awhile there, that was his sole method of interacting with us and everyone else.) His favorite words to spell? B-U-S, O-A-T-M-E-A-L, S-C-H-O-O-L, but the favorites change frequently. Once I set him up at my laptop, he was in ABC heaven…