A Parent's Persepective - Jester Queen

Let’s give a warm welcome to Jessie Powell of Jester Queen! Jessie is mom to Caroline, 9, and Sam, 5. Both of her children have been diagnosed with Asperger's Syndrome, which manifests in drastically different ways in each of them. Caroline struggles with gross motor dyspraxia and trouble processing abstract concepts, while Sam has behavior and sensory processing issues. Take it away, Jessie!

Our life in five words:

Dyspraxic, Urgent, Scheduled, Bouncy, Huggy

Four qualities I look for in a therapist:

1. Flexibility. Caroline has ODD. Sam has behavior issues out the yin yang. If you try to force either of them to do something through confrontation, you will both lose. Our therapist when we first moved down to Montgomery (who was not our very first therapist – that was in Lexington) was an awesome lady. She was not, however, a good fit for Caroline, because she was too much like me, too blunt and direct. Caroline responds better to a back door approach.
2. Honesty. Here’s the cool thing about that therapist. She was willing to make the call that this wasn’t working. Without acting like a jerk, she helped us find a therapist who was a better fit for Caroline’s personality, and she remains one of Caroline’s most ardent cheerleaders.
3. Creativity. Sam’s big thing in therapy is “no, I can’t.” But his therapist has turned that on its head. When he comes in the door, she says, “Sam, I’m having trouble with my pencil. Help me hold it right.” And within moments, he’s forgotten that he “can’t write” or “can’t color in a box”. She anticipates his objections and develops creative workarounds to help him make progress.
4. Playfulness. I’m bad at childhood. I wasn’t very good at it as a kid, and as a consequence, I struggle with enjoying kids’ games. My kids value their therapists because they absolutely love  children’s games. They enjoy the crazy funny things they have to do to make my kids move their bodies in space.

Three resources I can’t live without:

1. Fidgets. Caroline’s first OT gave her putty, and it was the first time I’d seen her grasp and hold something tightly in her hands. Even as a baby, Caroline had a very weak grip, and it took a lot of smooshing to help her get the hang of it. She’s also got to have something in her hands or she can’t focus. We have sand animals, koosh balls, rubber erasers, and a dozen other things to keep those fingers busy.
2. John Elder Robinson’s Look Me In The Eye. I love this guy’s voice. He describes his own growing understanding of what it’s like to live with Asperger’s in an approachable way.
3. Temple Grandin’s Thinking in Pictures. This should be required reading for parents of kids with an autism diagnosis. It’s a reminder that whatever changes we parents are having to make in our lives to adapt, our kids are making a hundred thousand more. And it’s a reminder that autism is not a death sentence. It doesn’t mean your child won’t be able to achieve and succeed.

Two words (or more!) of advice for therapists working with children with Asperger’s:

 

Sell books.

No really. Sell books. Be prepared for parental shock. Take a minute to explain what’s going on when you start your first session. Pause between activities to make sure Mom and Dad are acclimating as well as junior. When the inevitable tears begin, take a minute to reassure the grownups that this is normal and that the same activity making their child cry now will be a triumphant success very soon.

And to help them understand, have a lending library or offer books for sale. Our first therapist gave us a handbook. We bought it from her because I could tell right away that I wouldn’t be giving it back. I don’t have it anymore, and I’ve forgotten the title. It was a brown workbook. But it was such a wonderful resource for me. It helped me figure out not just how to anticipate some of Caroline’s needs, but also how to tell when I could combine therapy and parenthood and when I ought to just back off.

A word of advice for the parents of a child newly diagnosed with Asperger’s:

Not all kids with Asperger’s struggle with expressing love in conventional ways, but many do. If yours is one, don’t despair. Your child loves you very much, even if he or she isn’t doing any of the things you have been prepared to expect that mean love. Instead, love is being expressed in offbeat and unexpected ways.

Caroline had this paper towel holder that she was convinced went with her train set. She called it her trestle and lugged that thing everywhere with her. She didn’t say the words “Mom” or “love” on her own, even though she could quote episodes of Dora the Explorer verbatim and at length. It took me two months to realize that when she shouted “trestle trestle” at bedtime, she was saying, “I love you, Mom.” I finally stopped saying, “Yes, your trestle is right here,” and handing it to her, and saying, “I love you, too, Duckie.”

Sam talked late and his first words were angry ones. He struggled so much with his inability to communicate his own wants and needs that every waking moment was a battle. He showed his love with laughter. He’d be in the middle of some meltdown, and he’d just break out of it and laugh madly for a few minutes. It was disconcerting, but also comforting. He was still out of control in those moments, but he was saying, “I love you.” 

With therapy and love, things improve. The early days of a diagnosis are so stressful. You have to manage and adjust your own hopes and expectations while dealing with a whole host of emotions from those around you. Many families struggle with loved ones in denial. Don’t let them get you down. Remember to breathe, accept help where it is offered, and do what you need to do for your family. 

One dream for my children:

That they should grow up and live their own dreams. Our family is lucky. Nobody has ever questioned our kids’ innate intelligence. Every doctor, every therapist has always started our conversations with, “you have a very bright child here.” I have no doubt that if these kids want to go to college, they will be able to do so someday. And if they want to do something else entirely, I am completely confident of their ability to figure it out and soar. 

What I do to rest and recharge:

I take my own meds. Seriously. I struggle with bipolar, and that flatly cannot get in the way of my children’s lives right now. I read and write. A lot. I wish I could say I had a regular date night with my husband, but quite frankly, that’s not happening. There is one sitter who can manage Sam’s behaviors, and when she’s available, we go out. Otherwise, one of us has to be with the kids if they’re home. But we know to trade out and take care of ourselves or we’ll get burnt out and run down.

Jessie, thanks so much for stopping by to share your perspective! Readers, be sure to visit Jessie’s blog at www.jesterqueen.com. Not sure where to start? Check out this post to learn about Caroline or this post to learn allabout Sam. You can also find Jessie on Facebook, Pinterest, and Twitter.