Monthly Archives: August 2010

Home Again…

…home again, jiggity–700-mile–jig.

Please extend a warm welcome-back to Adam, who turned 14 on the 15th:

and Neil, who acquired a hand-me-down laptop this summer:

I don’t even have an iPhone, but anyway, my boys are back, and I am complete again. I remember a few summers ago when I was lamenting to an acquaintance of mine (who did not have children) about how much I missed them. He said, “If you miss them so much now, how are you going to manage when they go to college?!” I bristled and tried to be diplomatic when I pointed out that they’re supposed to go to college when they finish high school, not preschool, as Adam had the first summer he spent away from me. Leaving home is “supposed” to happen when they’re eighteen or nineteen, not when they’re five. It’s not supposed to be like this, I would moan every summer. They’re so little! They’re supposed to be with me now. But that’s not how it happened for us. I’ve had to get used to not seeing my children for several weeks at a time, since they were very young. Sometimes it’s been outright surreal, year after year. I would liken it to how it might be if I were in the military, but I have no experience in that area, so that’s merely speculation. I do know that these last nine summers have been yet another lesson for me in letting go, in trusting, and in being open to something outside the typical parenting experience.

In any case, we are now in the midst of the end-of-summer shuffle: the filling out of registration papers and standing in line to turn them in and pay fees, the scheduling of IEP meetings, the inventorying of past school supplies and the shopping for what’s needed, the getting back in touch with friends, therapists, and teachers. But it’s good to have them home. It’s good to know that they’ll be comfortable when they start school in less than two weeks. It’s good to have things settled. It’s all good.

And for the record, I’m still going to miss them when they go away to college. But oh, when and if that day comes, I will be one proud mom.

Of course, I already am.

The Everyday

When you have a special-needs child, there are plenty of things that you wonder if your child will ever be able to do. So when they actually happen – when you hear your five-year-old say I love you, even though it’s echolalic, or when your child sleeps in their own bed, or doesn’t wet it, or when he holds a pencil for the first time, or pets a dog – we note the occasion with much fanfare, and rightfully so. We know the effort involved in making those things happen, how long we waited, how much we hoped. They are nothing less than miracles.

But milestones don’t happen every day, of course. If they start happening every day, they’re no longer milestones. They become part of our daily life, the status quo. They are the everyday. And sometimes I find as much hope in the everyday as I do in the milestones. Why? Because we can’t live from milestone to milestone. We live from day to day.

My son was diagnosed with autism at the age of three and did not start talking until he was five. In 1997, we didn’t know for sure if he could learn to talk. And so when he slowly got started – first with various stages of echolalia, then, when he was using more spontaneous speech, learning pronouns, articles, tenses, and syntax – I was overjoyed. It didn’t matter to me that his voice was always flat, usually expressionless. I figured it would always be that way, and I loved it. I never even hoped that he would develop voice inflection because I was just glad to hear his voice in the first place.

Two years ago, our regional autism consultant created a weekly social skills class for my son to attend at his school, so that he could learn to communicate more appropriately with his peers. The object of the class was to instill conversation skills and teach socially appropriate behavior as well as how to interpret gestures and non-verbal communication. But something unexpected happened, and I can only attribute it to the social skills class. About three months after he started the class, I began noticing that he was using voice inflection. And he was doing it appropriately, not just random variations. He was putting emphasis on the right words and his tone was no longer as flat. And he’s been doing that for almost two years now. The boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people is now regularly conversing with voice inflection. That is now my everyday. And that is what gives me hope.

It’s true, the milestones sustain us. They are remarkable, miraculous, and worth every bit of celebrating. But when you sit down and stop to think about it, when you realize, hey, we’ve been using the PECS cards for three months now and my child rarely shrieks at home anymore, thank God, that is your everyday. That is where hope lives.

I’ve had many different everyday realizations over the years. In fact, that one about the PECS cards was one of them, over twelve years ago. Then I had another one a few years later when I realized that we were no longer using the PECS cards. There have been many other everyday realizations, equally hopeful. But now, my son is speaking with voice inflection, an unexpected gift, and that is now my everyday. What’s yours?

Plan B

 

Sometimes I think that the last sixteen years of my life have all been one big Plan B. One long divergent path. Sixteen years ago I graduated from college and quickly found myself with two children long before Plan A had stipulated. Having two children with special needs was not in Plan A. Autism (although it starts with A!) was not in Plan A. Divorce – no. Single parenting? No way in hell was that part of Plan A.

And so I learned that I didn’t just need to have a Plan B, I was constantly living it. We all do to some extent – life takes different twists and turns, and we all must adapt to change, some of it completely unexpected. Plan B has to happen whether you planned for it or not, whether it was an actual plan or a split-second decision. You go into the grocery store, race around throwing a few things into your cart, hoping that your distressed autistic child can hold it together for just a few more minutes, and then someone turns on an electric coffee grinder and it all goes to hell. Your child shrieks and tries to bolt, and it’s time for Plan B. You leave the blasted cart in the blasted store and carry your hysterical child out to the blasted car, dragging your other reluctant child by the arm because you can’t leave him in the store because he’s a toddler for God’s sake and you’re a blasted single parent. Everybody’s either shrieking or crying or kicking you or pulling on you or staring or shaking their heads at you. And you still didn’t get the few groceries you needed. Plan B sucks. Sometimes, even, it’s the loss of a job, a home, or a loved one – and then Plan B takes on a whole different persona, a whole different significance. It’s no longer just a new plan. It’s a safety net. Those, of course, are the most life-altering Plan Bs of all.

But I’ve also learned that Plan B, whether big or small, doesn’t always have to suck. Sometimes Plan B can even offer some comfort in disguise. And even though it’s not what you wanted or hoped for, you can make it work. It’s not Plan A, but in most cases, you can live with it, sometimes because you have no other choice. Slowly you get used to it. And you might even warm up to some aspects of it.

My latest Plan B, in a long string of Plan Bs (sixteen years’ worth), involved what to do after I’d moved my two teenage boys seven hundred miles away to live with their father in Los Angeles while I stayed in Oregon to sell the house. First, Nigel’s IEP wasn’t amended so that he could go to a special school for students with autism. So we came up with the Plan B of their father moving to a better school district in the L.A. area, one that had a good special education department. Meanwhile, I felt so confident with the timing of this major change in our lives that I was certain my house would sell before August. Surely one of those two things would work out. But neither one did.

So technically, we’ve moved onto Plan C at this point, or perhaps Plan Q by now. The boys are coming back to Oregon and will attend the same schools that they did last year. I have taken my house off the market. I’ll have to work extra hard to get Neil’s team to meet his academic needs, which is the whole reason why I wanted him to go to the special school in the first place. But here’s the wait-a-minute moment, the half-the-battle factor – Neil loves his school here in Oregon. He has friends here, he’s comfortable here, he’s safe, and he’s happy. Why would I want to mess with that?! Well, there are two reasons why – one, his father’s not here. Two, the school hasn’t yet figured out how to teach him to work independently. And those are pretty significant reasons.

In spite of that, every day I’m feeling better about this particular Plan B. The boys will be back at familiar schools in which they are comfortable. And I don’t have to find a new job (even the thought of that was a huge stress for me – those of you going through it, you have my deepest empathy). Those are pretty significant reasons too. And so, although Plan B isn’t what I’d hoped for (is it ever?), I can live with it. It might turn out just fine after all.

This and the photo at the top are of our much-loved and oft-climbed tree, which split in half a few years ago during a storm. The stronger half is still standing in our front yard, and the firewood from the weaker half lasted a long time.

Thoughtfulness

One of Neil’s favorite conversation-starting scripts (when “What’s your favorite natural disaster?” doesn’t go over too well) is “What’s your favorite Disney movie?” He loves to ask people this and has asked me many times over the years, even though I’ve told him the same thing each time – The Rescuers.  I think I was seven or eight years old when it was released in theaters, and I just loved it. The story intrigued me, and I found the characters both touching and funny. When we got the LP record, I listened to it so much that I memorized many of the lines (um…I guess it runs in the family). Neil always seemed to forget after I told him that it was my favorite, but I didn’t think too much of it. It could be that it was just a comforting script for him, and the repeated asking (fortunately not daily!) didn’t bother me too much.

*

Several years ago, on one of my occasional trips to the bookstore to hunt for autism books (this was back in the days when Barnes & Noble did not have an autism section; the entire special needs category, in a large bookstore, encompassed a single shelf with maybe only one or two books on autism, if I was lucky), I happily discovered Exiting Nirvana by Clara Claiborne Park (who also wrote The Siege). Neil was seven or eight at the time, and this was the first book I’d read on autism that not only gave me hope, it was actually helpful. I highlighted many passages throughout the book (on almost every page!) because so much of what I read of the author’s daughter reminded me of my son.

One of the sections that really stood out to me was about her daughter’s development in thinking of others and doing thoughtful things for other people, keeping in mind their needs or preferences. The most memorable part of the book for me was an anecdote that illustrated how, in adulthood, she had finally mastered this. While walking on the beach with her father on a cold and windy day, she decided to go back to the house for a sweatshirt. When she returned, not only did she have her sweatshirt, she had also brought her father’s jacket, unasked. My heart soared just reading about it, thinking that someday my son might do the same.

*

My sons are 700 miles away, visiting their father as they do every summer, and I haven’t seen them for six weeks. We talk on the phone and occasionally exchange little emails, a new development since last year. A month ago, after they had been gone two weeks, Neil asked me to email him pictures of our cats, so I took some new ones and sent them. The next time we talked on the phone, I asked him if he received them, and he said yes and thanked me for them (!), and I thought that was the end of it. I was just happy about the unprompted thank you (a recent milestone for him)!

A few days ago, I received the following email from Nigel. It might have taken four weeks for a response, but it was worth it. Imagine my complete delight.

Hi mom, thanks for the photos. So I thought of a photo to send to you in return. It’s of two of the characters from your favorite Disney movie: The Rescuers.

I love and miss you and I hope to talk to you again sometime.

Love,
From your son, Nigel