Hoping

The Reason I Write

Chris Irvine, Parent CoachLeave a comment

Recently I was thinking, after posting the story of yet another challenge with my daughter, about the content of my blog. I started this project as (1) an avenue for sharpening my writing skills and (2) a way to express myself in the face of some difficult circumstances. Once I decided to write, the subject was obvious. This is the thing I have to talk about.

It just to happens that the subject of my blog–parenting my Asperger’s kid–is fraught with a tremendous amount of emotion. Much of that emotion is sadness, frustration, and anger. Some of it is also hope (as you know, I’m focusing on that), admiration, and gratitude. My days are unpredictable. I think a lot, I feel a lot, but mostly I just cope. And I try to be optimistic. And I often fail at both.

This is definitely the story of my daughter and me, but I hope it’s much more. Because once this blog got rolling, I found my true purpose. And that is to speak for all of us parents of autistic kids. Or parents of special needs kids in general. And sometimes even just parents.

What I hope to do is be honest and open about this aspect of my life, to share my victories and defeats, my successes and failures, my moments of genius as well as all the times I royally screw up. I want you all to feel less alone in your struggle. I want the rest of my readers to have more insight into the life of a special needs parent.

So when I tell the story of a particularly terrible morning, it’s not to get your sympathy (although that’s a nice side benefit). It’s to illuminate the kind of struggles the parents of autistic kids might face, to lay bare our frustrations and fears.

I also realize that kids on the autism spectrum are individuals, and that our stories are unique to us. Some kids on the spectrum are very motivated but have social anxiety, the opposite of my daughter. Some kids are rigid and angry. Some kids are emotionally fragile. Maddie is easy-going and happy, stubborn and impossible to motivate. Some parents are more organized than I am, some have been ferociously fighting for their kids since they were toddlers, some have yet to fully recognize what they are dealing with.

But the overarching story is the same: Our kids reside at least in some ways outside of our society’s expectations, and they struggle to fit in. And we as parents have anxiety over how to help them now, and what their lives will look like in the future–next week, next month, next year, next decade. We love them fiercely, we want to both push them and protect them, we feel their pain and rejoice in the tiniest of victories. We feel alone much of the time, as if a chasm exists between us and other parents with only typical kids. We know they don’t know what our lives are like. We know they can’t. It’s a unique experience, parenting an autistic kid. Those of us who do it need each other. And this is why I write.

But something else miraculous has happened in the process of writing my blog: I am better able to clarify my own thoughts and feelings in a way I really hadn’t before. When you write things down (hello, journaling!), you take what might be murky ideas and emotions and put them into words. And it turns out words are really helpful! I might start a blog entry feeling defeated and sad, and by the end I’ve decided to forgive myself and be happy, to focus on gratitude and hope. What a gift!

The truth is that every day that I write, I am finding those things anew. I wish I could say these little daily epiphanies stick with me and that I am suddenly transformed. Nope. It’s a journey, a process, a lifetime project to figure out what to do and how to do it and how to find happiness and joy and cope with fear and hopelessness and frustration. And each day I work on those things. I write them down here, hoping the writing will help all my mental lightbulbs stay illuminated at least a little bit. Maybe a bunch of little lightbulbs will accumulate and eventually light my path so that eventually I can see very clearly where I’m going. We shall see.

In the meantime, I hope my blog is helping some of you. It is certainly helping me.

Hoping and Knowing

Chris Irvine, Parent Coach9 Comments

This is the year I have been waiting for. And by year, I mean school year, because as a mom that’s how many of us view the calendar. The “year” starts in August and ends in June, and the months in between, AKA summer, somehow find their own way of existing outside of The Year.

This is the year my daughter turned 15. She is about to start her sophomore year at a public high school after spending three years in a private school for kids with special needs. Maddie has Asperger’s Syndrome, what is now no longer considered a separate diagnosis from Autism. My fingers are crossed so hard it hurts. I want her to make friends, find her passion, somehow become more organized and motivated so that she lives up to her great potential. Mostly, though, I want her to get up in the morning even when she’s tired, and take showers at a reasonable interval so she doesn’t stink.
I lied before. This hasn’t been “the year that I’ve been waiting for.” Not really. I don’t think in years. Not until just now. Because life as the mother of a special needs child is best taken day by day.
I get up in the morning, hopeful but knowing exactly how it’s going to start. I will wake Maddie up gently, with a loving hug and a back rub, and now perhaps a tail-wagging puppy. I will tell her what time it is, place an outfit on her bed with a can of deodorant right on top so she’ll remember to use it. I leave, hoping but knowing this isn’t the end. I go to the kitchen and make her breakfast and then return to her room for another wakeup. She is unmoved, wrapped in her blanket like a caterpillar in a cocoon.
“Maddie,” I say gently, “it’s time to get up now.” Silence. “Maddie, it’s getting late, you need to get up.” Silence. “Maddie, please just make a sound so I know you’re awake.”
“Mmmm….” she finally utters.
“I made you some eggs. I have to go work on your lunch now,” I say, trying to hide the frustration in my voice. Maybe successfully, maybe not. “Please get up. Everything is on your bed. Don’t forget deodorant.”
I leave again, once again hoping and knowing. This goes on until a panic starts to set in. Most days my husband takes her to the van stop on his way to work. The van will be full of kids, waiting for Maddie to arrive because everybody else was on time. Maddie will be late. Again.
The scene almost always dissolves into mass chaos, with me running around, yelling at Maddie, often hastily shoving her shoes on her feet and tying them for her. Even though she’s a teenager and perfectly capable.
Her hair is unbrushed AGAIN. Most likely greasy because I couldn’t get her to shower the day before. Her dandruff is getting really bad. She isn’t wearing the pants I put out, but instead has chosen a pair she likes better that are smeared with dried avocado. Maybe she did her homework. Maybe she didn’t. Maybe she did it and it’s now under her bed somewhere. I am yelling, my husband is yelling. Somehow they get out the door, her breakfast in her hand. By 7:45 a.m. I feel emotionally depleted, defeated. Again. I didn’t cry, though. I don’t cry much anymore.
At least this is the story up until now. Tomorrow is the first day of her sophomore year, and this is the year I am determined to help her become more self-reliant, self-motivated, even a little more organized. I am counting on her school to hold her accountable in a way her sweet little private school did not. I also know that if we can’t achieve some success, the last resort is a therapeutic boarding school. I will have actually been defeated as a mom, now willing to give her to somebody else more qualified to teach her how to be a grownup. I don’t want to send my child away, but we have to do what’s best for her. For now, we are counting on this new environment to be successful.
So tomorrow is a new day. It’s a big day. But it is still just another day. I am hoping, but not knowing. Not yet.