Postcard from Autism Land # 2

Today was a beautiful day in Autism Land. It was all sunshine and lollipops. Literally. Neener and Roo are two for two on good days at school and at home this week, so they certainly deserved the lollies we treated them to on the way home from school. Roo unbuttoned a button for the very first time. Neener helped Roo pour a glass of milk. Roo said “Thank you.” Neener said “You’re welcome.” There was no frustrated echolalia yelling, no “incidents” noted at school, and no meltdowns. There was no trace of the white knuckle days we experienced last week. Today was a new day. A beautiful day.

Part of the reason today was so great in Autism Land was that I had a meeting with our social worker. I spent a big chunk of this sunny afternoon talking with her about Roo’s challenges and how we deal with them, and I learned something very exciting: We are not fucking up! We’re actually doing really well when it comes to managing Roo’s behaviour and helping her develop the skills she needs. Now, folks who know us may say “Well duh! You guys are doing a great job. Roo is a great kid, and you put so much into helping her.” But they are our family and friends. They have to say that. Besides, it is much easier to see that when you view Autism Land from a distance, and can see the whole landscape. We live smack dab in the middle of it, which makes it very hard to see the progress made over time, and even harder to feel confident in our day-to-day and moment-to-moment actions and reactions. All parents second guess themselves. Many parents of children with special needs second, third and fourth guess themselves, especially on the days when it feels like your entire world is being drop kicked into hell in a handbasket.

It helped to have an objective third party hear our concerns, hear the solutions we’ve cobbled together, and then tell us that we are actually doing things right. Things like ‘the hold’ that I get Roo in when her meltdowns spiral into hurting herself or others. I felt like shit for using that to calm her down and keep everyone safe, thinking I should not have to physically restrain my child that way. Like if I was just better at handling her, it would never have to happen. Turns out that those types of meltdowns are not unusual, and  ‘the hold’ is a good technique for our situation. And the deep pressure of the bear hug coupled with my slow, soothing voice in her ear talking her through the steps to calming down is teaching her tricks that she will eventually be able to use by herself. Ignoring the spitting and the stomping? I worried that doing that was on par with letting her get away with it. But nope, it’s actually a good strategy for making it stop. Talking to her, and to Neener about Autism? God, am I fucking them up with labels, and making Roo think there is something wrong with her by telling her that her brain is different?  No, apparently not. Kids really do deal much better when they have some information to go on, and we are respecting their intelligence and their need for an explanation by being open and honest with them. So, even though I might feel like a heel sometimes, I’m not! At least, not when it comes to doing the whole Mother of a Child With Autism thing. Our social worker will back me up on that. I might get her to put it in writing.

I still worry about what Neener and Roo know and think about our life in Autism Land. I probably always will. I hope we can keep accepting Roo’s Autism as a part of our lives without making it the focus. And on the good days, we can actually even laugh about it. Today was indeed a good day.

As we walked down the busy street to get that after school candy, Roo began chanting at the top of her lungs, ” I am autistic! I am autistic!”

“What?” I asked, to clarify what I’d heard.

 “Autistic.” she repeated. “I’m very good at aaht.” 

“Me too.” chimed Neener.

Ah yes, the newly adopted English accents courtesy of Mary Poppins.

” Right. Well, our whole family is aahtistic.”  I grinned.

It was a beautiful day in Autism Land.