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Back on the Horse

Chris Irvine, Parent CoachLeave a comment

It’s been several months since I’ve written. I’m not completely certain why I’ve had such a dry spell. Certainly life has continued to provide challenges, failures, successes, more questions–with or without answers–and even some adventure.

I have my suspicions, though.

This blog has been primarily about raising Maddie. And in the last several months, although she has provided many an interesting moment, there have been some other serious issues on my mind, and I didn’t want to necessarily write about them.

One is my health. I’m one of those people who always has an issue. Or two. Or three. It’s my back. And migraines. And terrible allergies. And unexplained and ongoing gut issues. And my ankles are messed up. And I have an allergy-related sleep apnea that makes me so tired all the time. I might sleep for ten hours and still feel exhausted all day. It sucks. I’m slowly trying to address all of those things, but I’ve found it hard to say, stick to a Pilates schedule when my stomach hurts so bad all the time. I’m finally figuring that one out, so maybe it’s time for those Pilates classes again. And yes, I have to do something like Pilates where I’m less likely to aggravate my ankle or back or hip or whatever. I have one of those bodies.

Second is my marriage. It’s a struggle sometimes. Statistics show a greater risk of divorce among couples with special needs children. Boy, ain’t that the truth. As if being parents isn’t hard enough, you throw in some extra challenges that nobody’s really equipped to deal with, and you’re rolling the dice.

Third is the other kid. Our son. He’s almost 14. He’s such a cool human being. I’ve been challenged with two completely opposite children, so parenting each one is an adventure, to put it nicely. H is intelligent, thoughtful, philosophical, and deep. Sounds awesome, right? Well, those qualities are admirable and desirable and all that good stuff, but parenting a kid like that is hard. He can argue you into a corner, for one thing. And he never ever gives up. While I admire his persistence, sometimes it’s just exhausting. More on him later, though.

Also my parents. I love my mom and dad. They live about 45 minutes from us. I wish they were closer. So I could help them. On the other hand, they’re not super great at accepting help (like mother, like daughter, I’m afraid). My dad has suffered from debilitating depression and anxiety for many years. My therapist thinks he’s agoraphobic, among other things. The word “bipolar” has reared its ugly head of late. I suspect he has some PTSD from a few episodes from his younger life. Whatever the diagnosis, and whatever the cause, he is severely disabled. He rarely leaves the house. It’s too stressful. Just riding in the car is often more than he can bear. He hasn’t driven for years even though he is only just turning 70. So I worry about my dad. But even more so, I worry for my mom. She is a doer. A worker. A creator. She likes to make things, so for several years she has been sewing items to sell at a local consignment store. Or two. Or three. She also refinishes furniture and makes things like framed chalkboards for kids’ rooms. She cooks up a storm, too. She recently completely re-landscaped their front yard so it’s more drought-friendly. She likes to be industrious. She has also spent her life without a lot of extra money, so when something needs doing, she does it, for the most part, rather than paying somebody else to do it. Every once in awhile, there is something beyond her scope (particularly since becoming permanently partially disabled some years ago because of chronic wrist pain in both arms) and she’ll have to hire somebody. But her go-to is “just do it.” How do a person who can’t do anything and a person who only wants to do things live together? Guess what? The doer, my mom, adjusts her life to suit the other. There is a lot of going nowhere. Particularly because Mom worries about what might happen when she’s gone. Dad’s just not reliably level-headed anymore. I want to help them so desperately, but it seems to be out of my hands. I want my dad to be well and, even if he can’t be well, I want my mom to have a life.

So I’ve been distracted, I guess. And I haven’t felt compelled, or maybe just comfortable, putting all this in writing. I don’t want to “expose” anyone. I also don’t want to make this blog a tribute to all my problems, and most of all I think some of this stuff is kind of private. At least the other parties involved might think so.

And then there’s Maddie. She’s still exactly Maddie. She’s at camp right now, the camp she absolutely lives for the rest of the year. When we were anticipating a New York-London trip we took last month, I asked her if she was excited. “Meh,” she said. “CAMP!” That pretty much sums up her experience of our trip (another blog or two will cover that). She just wanted to get it over with and go to camp. So right now I can rest easy knowing she’s in her happy place. She’s probably filthy and she probably has terrible B.O., but it’s out of my hands, and isn’t that a beautiful thing!

And before that, of course, the infamous school year (the actual “Year of Living Hopefully”) came to a close. More on that in another entry, too.

So today I’m back. I remember now that I can write and I like to write and I have something to say. A lot of somethings to say.

The story continues.

The Problem with Geometry

Chris Irvine, Parent CoachLeave a comment

When I had geometry in high school, I loved it. Math came easily to me. Geometry was intuitive and satisfying, especially proofs. If this, then that, and then this, and then finally that. I think what I enjoyed about math was coming up with a solution that is objectively right. You know when you are done, too. It’s probably the only field of study that is so concrete. Science is as well, but even as we answer questions using science, there is always the possibility that those answers are wrong or just incomplete. Math is so much better in that way.

Unfortunately, I am finding my battle with geometry a bit less satisfying this time around. As I like to say, “School was so much easier the first time I did it!” I was in charge of myself, for one thing, and nobody else. I did my work and that was that. Now I’m coaxing and helping and struggling and sucking at it.

My husband and I were both excited for Maddie to have geometry this year. She’s very visual and spacial, so we thought it would be a good fit. Also proofs were alway satisfying to both of us, so we anticipated Maddie would find the same interest we had. Uh, nope.

What I hadn’t thought through was her difficultly anticipating the future and how it might affect her ability to do a proof. You have to have a vision of how to get from the beginning to the end, and all the steps in between. She is having trouble. They’ve just started on this particular section, so I’m certainly not throwing in the towel, but I can see already that proofs aren’t coming as easily to Maddie as the rest of geometry has.  That mental follow-through just isn’t happening.

Furthermore, as you probably know, math has changed so much over the years. While premises and conclusions might be the same as they once were, the methods for getting to the end have changed dramatically. This has been a problem in our house for years. Do I remember algebra? Sure, but I’ve never seen it done that way. Proofs, it turns out, look different too. I could learn the new method–once I seriously reviewed the theorems involved–and then I could help Maddie. But for now I’m stuck.

Because math has historically come easily to Maddie, having trouble with a concept doesn’t sit well with her. She has little patience for going to battle with her homework. If she can’t do something right away, and do it easily, she gives up. She gets discouraged. She certainly has grit in other facets of her life (she has had to develop that), but homework isn’t one of them.

So over the weekend, when she had numerous missed days to make up for, geometry just didn’t go too well. We looked up a tutorial on the internet. That was potentially very helpful, but without the theorem knowledge in my head already, and without Maddie’s commitment to really trying, watching the video was pointless. I gave up. I got her through the homework she could do without much trouble, and hopefully she’ll seek out the help she needs at school.

The problem is, once again, she is not at school. She wanted more sleep, she said. She’d go later, she said. I knew she was tired. I also knew she wouldn’t go at all today. She has never once done that.

And so I accepted it. I knew she would never wake up, stretch and look outside, and think, “All right! I’m going to school! I’m ready for action!” She promises she will go the rest of the week. And for now, she means it. But she can’t really anticipate tomorrow, or what will happen if she doesn’t go yet another day. Just like the proofs, she can’t get from point A to point B to point C in her head. She’s living in point A. Always.

And unlike geometry, there is never a right answer with raising Maddie, or really any kid. You never know if you’re right or when you’re done. You can never write down that number and drop your pencil in a dramatic fashion as if announcing victory over your homework or your test. Problems aren’t solved. They morph into new ones. Or the answer you thought was right appears to be wrong now. This stuff is hard.

So we begin the week with Maddie behind severals days in her school work, and getting behind yet another day. Apparently the school’s current solution is to continue lunch detentions (Who cares? she says), and then bring in a truant officer. When? I want to know. And to do what exactly?

I don’t know what the solution to Maddie’s attendance issue is, but I’m pretty sure we are miles away. I guess the key is accepting that. Maybe even accepting the a solution or answer isn’t possible at all.

I have a friend on Facebook whom I knew in high school. He is a kindhearted, lovable and well-loved man who was in the special education class. He’s in his early 50s and still lives at home with his parents, who obviously adore him and fully participate in his life. His posts are typically upbeat and fun as he gets to do so many fun things with all of the people who love him. I don’t think he works. He’s very much like a kid in an adult body, and he gets to live out his childlike existence in such a lovely way. Nobody is forcing him to grow up, and nobody is pressuring him to be any different.

I was suddenly very struck by that yesterday. What if I discarded the idea of finding a solution? What if I went all the way, one hundred percent, to acceptance? What if I just focused solely on Maddie’s happiness and let her be the kid she seems to want to be?

The problem (if you want to call it that) is I know Maddie’s intellectual development is not an issue here, and she is quite capable in many ways, so I’m not sure at all when to give up the idea of her moving forward in life, living on her own, maybe going to college, maybe having some kind of job, maybe even having a family.

I think for now I’ll keep pushing forward, with the knowledge that at some point I’ll have to shift my expectations. And accepting that possibility.

For now I just have to get us through this day, and this week, and the next. At least at that point she’ll be on winter break, so I can relax a little. And maybe re-learn some geometry.

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.