Teen Autism

The Scene:  Interior of suburban family home. A mother, exhausted from just another regular day, collapses on the couch in her living room. She has just completed her responsibilities for the evening, taken a shower, and dried her hair. Alone, looking forward to some time to herself, she takes a deep breath and picks up a book that she hadn’t been able to get back to for several days. A minute later, one of her teenage sons opens the door of his room and walks down the hallway. He stands at the entrance of the living room, waiting for his mother’s attention. She turns her head to look at him, thinking that he’s going to announce some historical or scientific fact that he has just discovered. Or that he’s going to remind her once again about the Goonies 25^th Anniversary Event that he wants to attend the following month, in a city four hundred miles away. Or that he’s going to announce that he has to go to the bathroom.  His tone is serious as he begins talking.

Teen son:  My path is not out here [gestures to indicate the area in front of him], but in here [lays his fist over his chest and pauses before continuing.] Even if I find answers at that school in L.A., I will still have questions.

About a year and a half ago, a fairly new friend of the family came over for a visit on a day that Nigel had forgotten to take his medication. Behaviorally, he was difficult - highly agitated and unfocused.  At one point, when he was prevented from doing something that he wasn’t supposed to do, he went into full meltdown mode, growling and writhing on the floor, grabbing my legs and biting them.

Our friend tried to put a humorous spin on things. “Oh, he’s freestylin’!”

“Yeah,” I said, yanking a leg out of my son’s grip. At the time, it was painfully obvious that Nigel very much needed his two types of medication to manage his behavior, both at home and at school. And it made a huge difference for him, enabling him to be mainstreamed with assistance and - unless a dose was forgotten - eliminating or subduing his meltdowns. I think both of us were relieved by it.

But Risperidone, like most medications, has its drawbacks. In addition to Nigel’s excessively itchy scalp, it also caused noticeable joint stiffness for which he needed to see an orthopedist. And then there was something noticeable only to me - his eyes. I didn’t get to see much of them anyway, but I saw them enough to know them. Now when I looked in his eyes, there was a listlessness - a vacancy - caused by the Risperidone. I wanted his behavior to change, not his countenance. Of course I welcomed the behavioral management, but his eyes were different. He didn’t look like himself, even when he smiled. I looked forward to the day when I could look into his eyes and see him again.

That day came last week.

This past November, we discontinued the Zoloft, and he did fine with that. Every week afterward, Nigel kept asking me when he could stop taking Risperidone, and as much as I also wanted him to stop taking it, I wanted to be sure that he was ready. If not, we could have him go back on it, but that would have been difficult after the six-week weaning process (cessation of Risperidone can cause withdrawal symptoms if not done gradually). In March, I felt that he was ready, and we began the process. There were a few times when I wondered if it was too soon, but we pulled through. In fact, Nigel’s overall adjustment has been phenomenal. During that six-week period, we had two weeks of considerable upheaval while all of the flooring in our home was being replaced. Every room of the house, including Nigel’s, had to be completely emptied and furniture had to be relocated, including pieces of our sectional couch being kept in the kitchen for three days. Nigel was a bit on-edge during that time, and his medication was down to half-dose, but I am thrilled to report that he did not have a single meltdown. Not even close.

He became a little agitated at school during the weaning process, but he worked through it. This is huge progress for him! In the past, his agitation would lead to outbursts because he could not regulate his emotions or behavior. And now he can. The real test came last week when he was completely unmedicated and we attended his Court of Honor to receive a Scout rank advancement that he’d worked toward for two years. He had a new merit badge sash that he spent quite a bit of time applying his merit badges to, and he looked forward to wearing it. That night, we ate dinner and then got ready to go to the Court of Honor. After he dressed in his uniform, Nigel built some Lego while I washed the dishes. When it was time to go, I grabbed my camera and my dessert contribution, and then we left. The meeting room, before the presentation started, was unstructured and loud with parents chatting and kids playing, and I looked to see how Nigel was handling it. I could tell he was getting a little amped up, and then I noticed that he had forgotten to wear his new merit badge sash. I had to tell him before he discovered it during the presentation, which could have been disastrous.

I approached him quietly and broke the news. Angrily, he sucked in his breath and clenched his fists by his side. “It’s okay,” I told him. “Look - several of the other Scouts forgot their sashes too.” I could see him processing, regulating. Within ten seconds he had unclenched his jaw and fists and merely sighed in disappointment. “I was distracted by the Lego,” he muttered.

Sighing and muttering. This is freestyle now, and it’s a far cry from growling and writhing on the floor. In addition to that, he reported last week when he got home from school that for the first time ever he did not feel drowsy during second period, and he feels like he’s able to focus better. His scalp no longer itches. To top it all off, the next night at dinner he looked at me as he described a new movie idea, and he held eye contact for the longest I’ve ever experienced. It was incredible. And this time, the vacant look was completely gone. It was Nigel again. I gazed into his beautiful eyes, absorbing his essence.

I’ve got my son back. And he’s better than ever.

Do you remember the first thing you thought you wanted to be when you grew up? When I was four years old I decided that I wanted to be a writer. I could not yet read independently, but I so loved the books that were read to me that I wanted to write my own. I wanted to contribute to the universe of stories that enveloped me, entertained me, influenced me, and later, sustained me. I wanted to create worlds with words. And although I could not verbalize this at age four, I wanted to tap in. I wanted to be a part of the magic.

And so, at age five, I wrote my first book, illustrated it, and “published” it. I took a piece of cardboard from one of my father’s shirt packages and designed and bound my book with a cover. I even gave it a spine (although I didn’t know that’s what it was called). My accomplishment spurred me on, and I wrote more stories, “published” more books. I started a series about a mouse with a puffy hat and her animal friends. In sixth grade I wrote a novella about a mystery in my classroom. One of my friends illustrated it, my mother typed it, and my father took it to his work and had several copies printed and spiral bound. I just loved creating books. I continued to write more stories throughout high school and college, and then I had children and set my fiction writing aside. And although my boys are wonderful beings who completely enhanced my life, there was a hole where my writing had been.

So, five years ago I decided to follow the old adage “write what you know” and wrote a novel about a single parent raising two children, one with autism. It went through many drafts, was edited by a complete stranger who knew nothing about autism, or me, or being a single parent, and went through several more drafts. At no point had I attempted to solicit an agent. It’s not that I have anything against agents or the publishing industry! Definitely not. It’s just that that avenue was not this book’s destiny. This book was to be the culmination of what I dearly loved to do in childhood - write and publish my own books.

I still love to create worlds with words. And now, I’m thrilled to announce that my first novel, Slip, has been published! It’s available to order on Amazon, although they seem to be having trouble keeping it in stock (!) It’s also available directly from my publishing company: http://kovapublishing.com/books/

There’s a quote by James Allen that I read on the back of a Celestial Seasonings tea box years ago: You will always gravitate towards that which you secretly most love. And I’m happy to say that I’m still gravitating, still loving, still writing. I’m still tapping in.

Last April I had a bunch of Autism Awareness Month announcements that I posted periodically throughout the month. I had been contacted by several agencies and individuals requesting that I share their information with my readers, and I was glad to oblige. This year, for whatever reason, I only received a couple of requests. So without further ado, and before the month is over, I’d like to highlight a company that I’m sure you’re all familiar with.

I’ve written about CafePress before, when I first discovered how many autism T-shirts they have available. There truly is something for everyone! And now when you buy from CafePress, a portion of proceeds on every sale from the Autism Awareness page benefits Autism Speaks. Plus, orders through 4/30/10 of $40 or more receive free shipping.

When I last wrote about the autism T-shirts at CafePress, I mentioned the “Autistic and Proud” shirt that I saw there, hoping that someday Nigel would want to wear it, because I want him to be proud of who he is. At the time, he was pretty down on the subject of autism - “the A-word,” he called it - and certainly would not have donned a shirt advertising it. But in recent months he has been feeling better about his autism, his “difference,” he calls it, and so last week I showed him the shirts and asked him if there were any he liked. He immediately chose this one:

It says “Wish you could see the world through my eyes.” And I thought, Yes. That’s the one. It’s perfect for him.

We still have plenty of rough days and difficult moments. But some things, with time, therapy, and lots of repetition, can get better.

Please join me at Hopeful Parents today. 

When Nigel was diagnosed with autism in 1997, his father and I immediately enrolled him in an ABA-based program that we were fortunate enough to have access to all those years ago. We hadn’t even heard of ABA. But we were steered in that direction by the therapists, teachers, and autism consultants who had identified him, and we went with it. We were surprised to learn of the intensive nature of the program - thirty hours a week with two weekly home visits. At that time we were living at poverty level, so the state paid the staggering costs of the therapy our nonverbal son so desperately needed, and we were grateful.

But had we been faced with footing the bill ourselves, we would have moved heaven and earth to do so. As it was, I went back to work shortly after the diagnosis. My then-husband worked evenings and weekends while I worked weekdays. Even with our nearly opposite work schedules, we still had some crossover time when we both needed to be at work. Nigel could not be put in daycare due to the severity of his autism at the time. We tried a few places and were turned down. There was also Aidan, who was eighteen months old then. My father had recently retired and offered to babysit a few afternoons a week to fill in the gaps, and I am forever grateful for that. My boss allowed me to leave work early when needed, and I am equally grateful to her. We made a lot of sacrifices and relied on the assistance and understanding of those close to us to get through those early years.

At some point, we noticed with dread that Aidan had strong sensory issues and a delay in language development and enrolled him in a therapy program similar to Nigel’s, minus the ABA component. Having two special-needs children with all of their therapies, doctor appointments, teacher and specialist meetings, and juggling work and, ultimately, single parenting was painful, especially when their father moved 700 miles away. But I did what I had to.  And I would do it all again. There is nothing I wouldn’t do for my boys.

And I still do. When Nigel was terribly bullied at his middle school two years ago and the administration would not, as I requested, talk to the student body about developmental disabilities, I pulled him out and made sacrifices to be able to homeschool him. When Aidan developed an unknown health issue last year, we racked up innumerable hours scheduling and attending all of the various medical tests he endured and then the surgery, once his condition was identified. But that’s what you do. You do whatever your kids need. And it has become painfully obvious that my boys, now teens, need two things: more time with their father and specialized instruction for Nigel.

Nothing I wouldn’t do.

So I take a deep breath as I write this, as I commit the concept to print: We are moving to Los Angeles. Not next week or next month, but soon. In mid-June, for the past eight years, the boys have gone to visit their father for several weeks. This June, they’ll move. I’m putting my house on the market in about three weeks, and I will join them in L.A. as soon as it sells.

It’s a huge change for all of us, but one that I believe will yield many positive results. Nigel will attend a specialized school for autistic students that will target his lack of executive function. And with his recent announcement of wanting to go to film school for college, we’ll be in the right area for that to happen down the road. Aidan, who has had the hardest time living far from his father, will be near him year-round. And I plan to finally find a job that fits a little better with my English degree, as well as spend time with other family members whom I have missed for many years (I was born in L.A. and moved to Oregon for college).

But I can’t begin to describe how much I’ll miss beautiful Oregon and our family members and friends who live here. I have no doubts that this move is the right thing to do, and that this is the right time, but I have spent half of my life in Oregon, and there is much to be missed. It’s not called “God’s Country” for nothing! Then again, the other half of my life has been spent in the “City of Angels,” and, truth be told, my feelings aren’t too mixed about returning to it. But for now, I’ve got a yard to spruce up and lots of paperwork to fill out.

It’s time.

Are you ready for the irony of Autism Awareness Month ironies?

As many of you know, I am the southern Oregon chapter rep for the Autism Society of Oregon, and I facilitate the monthly support group meetings. Since, as all of you know, this is Autism Awareness Month, I planned to show an informative DVD of a presentation given by an adult with Asperger’s, loan out many of the books I’ve reviewed here, share some Easter candy, and give out various autism-related “goodies” - magnets, bumper stickers, symptom cards, etc. I got there a few minutes early, set up the TV/DVD player, put out all the books and paraphernalia, and thought about what I wanted to say during the meeting.

But no one came.

Now I know that many of the support group members also read this blog, and I want to assure you that I am not writing this to complain or to indicate any sort of disapproval. It’s totally okay! Some of you e-mailed to let me know that you would be out of town or otherwise engaged or might not have childcare. And while kids are always welcome to attend the meetings, I completely understand if you, the parent, would rather not have your child there, for whatever reason. Believe me, as a long-time single parent, I understand! I know how it is when you just want to get out of the house by yourself, but can’t. And I definitely know Busy. Busy and I have been hanging out too much together lately, I’m afraid. I know how it is when you just can’t add one more thing. When you’re so busy that it wouldn’t be a break to attend the meeting, and a break is the thing you need most.

And I know how it is to need a break from autism. Not necessarily from your child who has it (although that is often the case!), but from the barrage of all things autism - books, DVDs, news stories, events, meetings. I’ll be the first to raise my hand and say that I’ve often felt this way! Coming up on thirteen years post diagnosis, I sometimes feel over-aware. Saturated. Not to mention tired. All of us feel this way more often than not; it comes with the territory. And so, we need a break from autism. And it’s understandable to feel a bit “over” the idea of Autism Awareness Month.

Tonight, I waited in the meeting room for twenty minutes, metaphorically shrugged my shoulders, packed up all of the autism stuff, and ate some Easter candy as I drove home. And I thought about the fact that the people who most need a break from autism don’t get one. Every day our kids must contend with painful sensory issues, communication difficulties, social misunderstandings, vulnerability, and many other issues described so well by my friend, Jess, who wrote this post that I highly recommend you read. And I highly recommend that you pass it along to your friends and relatives. Because so often we talk about what autism is, but we don’t always talk in specific terms about how it really is for our children. And once people can grasp that, wrap their minds around the reality of it, I think it will make a tremendous difference in how they view our kids and this thing called autism. That’s what I think Autism Awareness Month is for. I’m aware. You’re aware. But there’s a world of people out there who aren’t.

I tend to notice a lot of things in early spring. By the middle of spring, I am usually plagued by spring fever and am unable to focus on much of anything. But in early spring, I’m alert, I’m happy that winter has come to an end, and I’m much more observant. I notice, of course, that the grass and weeds in my yard grew while my back was turned and that the tree in the front has lost all of its pre-leaf blossoms overnight. I notice that my cats are shedding like we’re in the middle of a heat wave. And I notice that my sons seem much taller than when I dropped them off at the airport nine days ago.

This time, at least, driving to the terminal to pick them up, I don’t cry. I take it in stride now, their new ability to take a direct flight on their own. I will never take it for granted, but it is the new norm, the status quo. Of course, it is still a novelty, and I wait with excitement on the receiving side of the revolving security doors, watching. I see Aidan first, notice the sun across his nose, his hair, the color of milk chocolate, casually falling across his eyes. He wears cargo pants and flip-flops and sports a new shirt. Nigel towers behind him, also in a new shirt, and jeans, carrying a tote bag. I smile and wave as I approach them. I embrace Aidan, inhaling the scent at the top of his head, realizing that I won’t be able to do that much longer. Nigel stiffly accepts a hug. Usually I don’t think about it; this is how he hugs. But sometimes I wonder if it will always be this way. No matter. It is what is, and I love him for it.

I notice a wide ring of chapped, irritated skin surrounding Nigel’s mouth, and then I notice that he has shaved. Shaved! The last time he had gone to L.A. to visit his father (at Christmas), I had mentioned to him that Nigel might need to start shaving soon, but we hadn’t discussed it since, and now, it’s done. My little boy! Shaving!

“Wow! You shaved!” I exclaim.

“Yeah,” he replies in his deep, steady voice.

We step out of the way of the other passengers filing through the security doors and start making our way to the luggage carousel. “It looks like the shaving caused some irritation to your skin,” I say, which he denies. He claims that it had been windy and dry on a day that they were outside all day long, and that had caused it. But Nigel has always had extremely sensitive skin, so I am not convinced. He seems to believe that I might tell him not to shave any more if he admits that it irritated his skin, and no way would he give up a rite of passage that he’d long awaited.

“Well, I think your skin just needs a little time to heal before you shave again,” I suggest. “It needs to get used to the sensation of shaving, and then it won’t get irritated when you do it. We’ll put some lotion on it, and it should be fine in a few days.”

“Okay,” he says.

Later, at home, I bring him some facial lotion. The lower half of his face is red and dry, the skin tight. He has been opening his mouth in an exaggerated manner, trying to “stretch the skin so that it won’t crack.” I suggest that doing so might make it worse, but he is adamant, even though he complains that it hurts. I cut to the chase.

“So how do you feel about shaving? Do you feel like you’re growing up?”

“I’m fine with it,” he states. “It’s just another step to adulthood.”

Apparently the rite of passage wasn’t as big of a deal as I had thought. He takes it in stride, my not-so-little boy. I think I’d do well to follow his lead. But for the moment, I can’t get over the fact that my firstborn is shaving! Even though I knew it was coming, it snuck up on me faster than the grass and the weeds, faster than any sign of spring. Yes, spring is here, and my boys are growing up. All at once.

You’re probably going to see this often when reading reviews of The Autism Mom’s Survival Guide: Susan Senator has done it again. Her second book is excellent on its own, or as a companion to her first, Making Peace with Autism, which I loved and reviewed.

And I love this one, too. Reading it was like Senator holding my hand, leading me through the process, coaching me. The first chapter is an essential look at perspective and how it shapes our views and emotions. It refers not only to our own perspective, but that of our relatives, friends, and neighbors, and society in general. Senator deftly and graciously addresses the issues of depression and coping with judgment and criticism, and she lists helpful strategies for parents to free themselves of “autism baggage.” What follows is a chapter on the various types of therapy and autism treatment, as well as a discussion about the variance of the spectrum and how the autism community is divided over the cause and cure issues. Senator offers concrete advice for gaining perspective on these issues and choosing therapies for our children.

The bulk of this exceptional book is filled with many personal anecdotes from various autism parents interviewed by Senator while she researched and wrote the book. These parents candidly offered their experiences in different areas, including having fun with their children on the autism spectrum, planning successful trips, taking care of their own needs, focusing on their marriages, and getting help from others. Senator herself contributes many personal examples and advice in these sections, including a lovely description of a trip her family had taken to Colorado, which involved much planning and preparation. Her son, Nat, attended an extreme-sports camp specifically designed for kids with autism while she, her husband, and their two other children explored Colorado. One of my favorite parts of the book was Senator’s beautiful description of coming back to the camp to pick up Nat. “I was ravenous to see Nat again. We all were, but Nat was nowhere in sight. ‘Keep watching the trees,’ a counselor told us. The trees? A few moments later, a rustling sound, and then, suspended on a rope from a zipline, Nat came sailing through the trees with a hardhat on his head and a smile on his face.”

The final chapters of the book cover our children’s growing up years, including the subject of residential placement, and becoming adults, with sections on independence and advocacy. Since my own son is rapidly approaching this point, I found all of the information especially helpful and comforting, coming from someone like Senator, who eloquently describes both the beauty and the difficulty of her experience. She ends The Autism Mom’s Survival Guide with an absolutely brilliant epilogue that I’m not going to give away in this review. You’ll just have to read it for yourself!

An e-mail I received today:

Hi mom,

This is my pipe cleaner sculpture of Charlotte and her web. I made it 
today. What do you think of it? We are  having so much fun with dad. I love you and I’ll see you soon.

Love
Nigel

* one of the words Charlotte wrote in her web (and also what I think of the sculpture)!