hope

Plan A

Chris Irvine, Parent CoachLeave a comment

Yesterday my husband and I met with a quintet of professionals at Maddie’s school to discuss her attendance, or lack thereof. I’m pretty sure she’s missed at least 50% of the school days so far this year. Most of the time it was a result of my failed attempt to get her going (or alternatively, her successful attempts to resist). But for the last couple weeks I had just given up. I have talked about acceptance so much in the past, and tried to distinguish between that and giving up. There is definitely a difference. And this time, I was really just giving the hell up. I couldn’t take it one more day. After weeks and weeks of a migraine, I had started to think maybe I would just always and forever have a migraine, and that’s not acceptable. I had to give myself a break for once.

I didn’t have a particular outcome in mind when I anticipated this meeting. I just wanted a plan, any plan, whether it involved home schooling or online schooling or a high school proficiency exam in lieu of continuing school. Maybe she would in fact be done with high school and we could just move on to something else. What, exactly, I couldn’t fathom because the struggle is simply to get her to get out of bed and go somewhere on a somewhat regular basis. So would there be another somewhere she’d be more motivated to get to? Maybe–hopefully–someday, but certainly not now. So am I just trading in one headache (quite literally) for another, unknown, new and equally bad one? Who knows.

We showed up on this beautiful fall day and in the conference were the usual IEP team: Maddie’s teacher/case manager, the school psychologist, the assistant principal, her counselor and a teacher (in this case, her PE teacher, who mistakenly showed up our meeting instead of another IEP but gave his two cents anyway: “She’s great when she’s here!” The usual refrain.)

The meeting went like this:

Chris, what does her day look like when she’s not at school? Does she have access to electronics?

Well, normally I take stuff away, but the last couple weeks I had just given up. I let her do whatever she wanted. But I did hide her computer a few months ago and I just finally found it yesterday. (I failed to mention she’s just been using my laptop instead.)

Usually we advise making staying at home as boring as possible.

Madz doesn’t get bored. If she can’t use electronics she’ll craft, or work on a costume, or make a sword, or put stickers on her wall, or go pick flowers, or lie around with the cat.

(Looks of skepticism from the team. I know it’s the truth but I feel guilty anyway.)

Okay, what is the minimum she can go to school and still make it work? I asked.

Hmmm…that’s a very good question, they all agreed.

And it was a good question, because I do believe it led to the best possible solution that still involves going to school.

Thanks to this dedicated staff, who are always flexible and motivated to make things work, we decided to propose to Maddie a 2 1/2-day week, basically, beginning after Thanksgiving break. A shortened Monday, and then full days Wednesday and Friday. No two school days in a row. Hopefully having a recovery day in between school days will help. Hopefully a late start on Mondays will help. Hopefully, hopefully, hopefully.

Some months ago we installed a hot tub in the back yard. In addition to the usual benefits of a hot tub–muscle therapy and general relaxation–I have found an even more beneficial outcome, and that is the time I spend with Maddie. She loves the hot tub and nearly every night she invites me to join her for a soak. I always say yes. Always. It’s quiet and peaceful and we’re alone out there, so there is literally nothing to do but talk. And when you have a kid who’s not much of a chatterbox, or who finds expressing herself either challenging or unappealing, it’s a gift to have a half-hour chat each night.

Sometimes we talk about astronomy (she teaches me things, for I know nothing). Sometimes she utters a phrase to be funny, and I find it appalling, and then I have to tell her what it means so she can make better choices about saying that phrase again. Sometimes we talk about boys. And sometimes we talk about school or living skills or what she might like to do with herself in the future.

Tonight, after proposing the new and updated schedule, I mentioned, when I thought of it, that if she’s enrolled in her high school, she could go to prom. “Huh,” she responded, clearly interested. I told her about how when I was in school, students could only attend prom as part of a couple. Now, I said, you can go with friends.

“How does a date work?”

“Do you mean to prom? Are you thinking of Aaron?” I asked.

She nodded. Apparently there is a mutual crush thing going on between these two. I have not met him, but I do know they both love art and work together in the cafeteria (that’s another story). The have gotten to know each other well. I think they’re both a bit on the outside, but they found each other last year when they both spent lunchtime in their science teacher’s classroom.

“Does the boy ask the girl, or the girl ask the boy?” she asked. Such a different conversation from those I have with my 14-year-old son, who’s savvy enough to realize that an eighth-grade “relationship” isn’t really much of one, so he’d rather wait until high school, at least, when he can actually date.

I assured her that either way is perfectly acceptable, and I even suggested how she might ask very casually, so she wouldn’t feel too nervous. “Well, I told Colton I liked him,” she reminded me. Colton is a boy she knows from camp, and she somehow conjured up the nerve to say those words to him. I’m pretty sure his response was “thank you.” I don’t think he has any more experience dating than she does, so overall I think that went pretty well. However it had gone, I would be proud of her. Such courage to put yourself out there like that, not having any idea what the response would be!

Anyway, back to school. I’m hoping that with the modified schedule and the temptation of going to prom with Aaron, perhaps she can manage to get up and go enough to make it work. I’m feeling a teeny bit optimistic, uncharacteristically, but I think that’s perhaps more wishful thinking than anything. I just want this to work out so much, mostly because I think it’s the best thing for Maddie, but also because the idea of figuring out something else to do and then embarking on a whole new scenario is daunting. I’m not sure if that’s even the right word. Or maybe it is. Maybe daunting and depressing and just a giant bummer, just a new battle to fight, a new source of stress, a new source for migraines.

But for now, we have a plan. We’ll look into Plan B, which–for now, at least–does not include boarding school. I don’t even want to think about alternatives, but I have to be prepared for disappointment and frustration, and perhaps if I have a Plan B in my pocket, saying goodbye to Plan A won’t be so painful.

Fingers crossed, though. Fingers crossed.

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.

Winter Camp

Chris Irvine, Parent CoachLeave a comment

It’s December 30th and Maddie is at winter camp. She loves this camp so much that as soon as she gets home she starts the countdown until next time. Last year was her first time doing the winter session, and after two years of balmy weather, a cold snap that particular week took us both by surprise a little bit. The whole time she was gone I worried that she would be warm enough. She managed, apparently, by wearing everything she could pile on. But she was cold.

It’s cold again this year, and although that didn’t come as a surprise, I didn’t help her pack that much because I wasn’t feeling well that day, so I have no idea if she packed gloves or a scarf. I know she has a down jacket, hats, and Uggs, though, so I think she’ll be OK. Still, I couldn’t help hunting down a pair of gloves and enclosing them in a box with some Cheetos, M&Ms, and glow sticks for New Year’s Eve. I hope she’s happy! Last year’s care package was a big pile of new wool socks. Not very exciting apparently, but I was in a panic about her survival, I guess, so I overnighted some directly from Amazon. I now imagine her delight at receiving a package followed by bewilderment upon seeing what was inside. Apparently the other kids got cookies and stuff. Oh, well. I try.

So today I’m thinking a lot about Maddie in her absence. I know she’s having fun. I hope she’s staying warm and dry. I hope she got her care package today and was delighted instead of deflated by the contents. I hug her in my mind. I tuck her in and kiss her at night. She’s not here, but I feel her anyway.

It’s pretty quiet around here. Mellow. Easy. Frankly either kid without the other is easier than both together, so I try to enjoy the quiet. I asked my son if he missed Maddie. I was joking. He just laughed. Fair enough.

But when Maddie is away, I really do miss her. I miss her in the sense that it’s weird for her not to be here, but I also miss her liveliness, her spirit, and her sense of humor. I imagine she’s yelling “CAMPFIRE!  I LOVE CAMPFIRE!” as loudly as she yelled, “I GOT A CAT BAG!” when she opened the cat-tapestry duffel bag my mom made for her Christmas gift. Oprah-style yelling. Or “HOLY bleep!” when she opened the box of maybe 60 rolls of duct tape I gave her, which, incidentally, she packed in her CAT BAG! to take to camp. It was so heavy that I sneaked a few rolls out before she left. She had to carry that thing quite a distance to her cabin. She didn’t care when she packed the bag, but she might have cared halfway to her destination when a heavy bag, a rolling suitcase, a sleeping bag, and her backpack might have suddenly become too much. Hopefully, though, she didn’t look in the bag and think, “Hey! Who took out that fourth roll of blue I packed?” I wouldn’t put it past her.

Last summer on the last day of camp, I showed up for the usual end-of-week celebration. In the first 30 minutes, at least two people asked Maddie for duct tape. She had come prepared, and she had now become The Girl with the Duct Tape. It’s nice to have a recognized role in society, isn’t it? Especially when it’s a helpful or meaningful one. I’m so glad she discovered the importance of duct tape! I imagine her at camp now, rolls of duct tape around her arms as far up as she can comfortably wear them, always at the ready for a repair or prop construction, feeling like a queen because she really matters. I love that thought.

As this cold and wintry week continues, and the year 2015 is wrapping up, I anticipate Maddie’s return with somewhat mixed feelings. It feels right to have her home. The dogs will attest to that: when the pack is together, all is right in the world.

But two days after she gets back, school starts again and so does the stress that comes with it. I know it’s coming. I’m thinking about that knowing now. Knowing. Maybe I can find an ironic sense of comfort in the knowing, even though I’d prefer the truth to be otherwise. I know what’s coming, though. I do. Perhaps I can relax into the knowing, the predictability, and just let it go. At least for a day. And let 2016 start off in the best way possible, with a lot of love and appreciation for my kids, and a mixture of optimism and acceptance for whatever is to come.

And a lifetime supply of duct tape.

 

Step One

Chris Irvine, Parent CoachLeave a comment

I decided some time ago that I wouldn’t chronicle in my blog the minute details of when Maddie does and does not go to school. Too much of the same thing day after day. She went to school, yay! She wouldn’t budge, boo.

Today, however, the travails of school attendance leaped onto the forefront of my parenting life as my husband Jake and I met with the educational consultant to discuss the possibilities for Maddie. Or really to discuss how to determine what the possibilities are. At this point, we don’t have a clue.

There are many challenges in choosing a path. As with every fork in the road, where the paths lead is uncertain. What if we…? Who knows? Who knows whether each decision we make is the right one or the wrong one? Nobody. So we do the best we can we the information we have (and whatever information we are still to get), and hope for the best.

When the topic of boarding school comes up, people are generally sympathetic. Often they see how this challenge takes a toll on me. Well, they are right: the effort I expend parenting Maddie as a teenager and the general feeling of futility put an awful lot of stress on me.

But if we do in fact send her away, it will be for one reason and one reason only: it’s the best thing for Maddie. It will not be to save me any stress. In fact, the thought of not being there for Maddie when she comes home from school with a problem, or when she wakes up sick, is heartbreaking. But what we want for her is to live up to at least some modicum of her potential. She is a clever, creative, lovable, warm, interesting person. She is passionate about the things that interest her. She is resourceful and enthusiastic. She’s also hilarious. For her, a meaningful life should include friendships and some way of contributing to society, whether paid or not. She is fully capable of accomplishing things, whether she’s gardening or teaching or working with animals or writing or making things with duct tape. Plus, people love her. She’s so fun to be around. She should feel the rewards of friendships and feel appreciated for her gifts.

At the moment, those things seem so far away. At least once a week she decides she’s not going to school. We don’t know why, exactly, but we’re pretty sure the problem lies not in the school Maddie attends, and not in Maddie’s performance when she’s there. A day at school is typically pretty successful across the board. She’s productive, happy, and well-liked.

The problem is getting her there consistently. And getting her to do her homework when she’d rather not. It’s a daily struggle. The point, though, isn’t necessarily her academic success. For right now, it’s learning to do it anyway. Learning to get up when she’s tired, to do the things that are boring or laborious or challenging anyway. I don’t care if she gets straight A’s or straight C’s as much as I care about her finding something inside of herself to motivate her. I realize she’s only 15 and anyone that age has a lot of growing up to do, but her future is so uncertain, I’m afraid to just wait around for her to figure this out on her own.

Today the question arose: What if she can never find motivation? What if that never happens?

My response: I can’t go there. I have to have hope. I have to believe in Maddie. I have to believe that she will be able to be a contributing member of society, to have friends, to get out in the world and share her tremendous gifts. At the moment it seems that, if given the choice, Maddie would spend her days in her cave of a room playing Minecraft. Uh, no. She’s too awesome for that.

And because she’s so awesome, it remains my job to try and try and try to help her live her best life. We just want her to be happy, and to be happy, I think she needs to feel valuable, important, appreciated and loved. And so I continue to fight for her, to ponder the possibilities, to investigate possible avenues to bring that to fruition, to make the most of the resources we have, and to find new resources, whatever they may be, to push her as much as I can without pushing her too far, to encourage her without berating her, to love her and cherish her and figure out how much, exactly, to expect and demand from her.

The result of the meeting today was this: I am going to get additional evaluations of Maddie so that we can be better informed about her strengths and challenges (not academic–it’s called a personality screening), for ourselves and for any potential educators. The consultant will go to the high school and observe Maddie to help round out the picture. Then we will consider the options. It may be leaving her at her current school with additional help; it may be moving her to another local school that’s more compelling to her; it may be sending her to a mildly therapeutic boarding school. That’s the order of my preference, with the first being WAY out in front. We don’t even know if there’s a boarding school that would be a good fit. We don’t know if there are resources here that can help us. It’s all very much up in the air.

So there we have it. We are nowhere closer, really, to knowing what the plan is than we were yesterday. But we have, at least, begun the process of making a plan. And we know that plan could change, or we could take a path and it might fail and we might have to redirect. Such is the nature of parenting. Such is the nature of life.

At best, we make informed choices and hope for the best. And then we remain open to making a different choice. When a change of course is necessary, it’s just information. So we take that information and try again.

And hope for the best.

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.