Teen Autism

                                                                        Crater Lake

Is summer over yet?

Don’t get me wrong. I’m a heat-seeker. I thrive on the warmth, crave it all year. So I love the weather. But I hate missing my kids.

This is their ninth summer in Los Angeles with their dad, 700 miles away from me. For nine summers I have sat at my desk and stared at their pictures and talked to them on the phone. My “conversations” with Nigel haven’t always been on track, but he’s gotten better as the years have gone by. And I’m just glad that he has the ability to talk on the phone in the first place. Because that wasn’t always the case. These nine years have brought so many changes.

So I sit here, looking at my desk photos, clicking through summer posts from 2008 and 2009, wondering what the heck I wrote about when my kids weren’t even here. I wrote about several phone conversations, and I did a series on Nigel’s early development. I wrote book reviews and posted about miscellaneous autism and special needs topics. Last summer I wrote about my incredible trip to Nepal for autism education.

But this summer I find myself at a loss for material. My main sources of inspiration are not in my presence to say funny or profound things. Our phone conversations consist of what-did-you-do-today and I-miss-you and the occasional movie idea/obsession monologue.

But the real reason is that I’m not at my emotional best right now. I’m disjointed without my boys, I’m disappointed that my moving plans aren’t coming together, and I’m disheartened in general. Plan B will go into effect soon, and it’s a letdown. I can dress it up and say that I’m hopeful, but it’s not at all what I had hoped for. It just doesn’t seem right - or fair - to have the blues in the summer. But I do.

What do you do when things don’t go the way you’d hoped?

Please join me at Hopeful Parents today.

It would be almost impossible to enumerate the many things we learn from our children, particularly those who have special needs. Infinite patience, for one. Hope. Perspective. Appreciation. Acceptance. Love. And maybe a thing or two about dinosaurs or natural disasters.

But with each of our children, special needs or not, if we really stop to think about it, we might find that one thing stands out above all else. The one thing that we really needed to learn from them, and from them alone. I wrote recently that what I have learned from Nigel is the power of belief.  More than anything else, every day of his life, Nigel has taught me to believe. But what I have learned from Aidan is just as valuable.

In a word - surrender.

We’re not conditioned to view surrender as a good thing. To most of us, it means giving up. But to me, surrender means letting go. It means letting go of that which I cannot control. It means letting go of expectations placed upon a near-typical child. It means accepting What Is. And it’s something that Aidan, even more than Nigel, has taught me every day.

*

Unfortunately, I don’t write as much about Aidan. This website is called Teen Autism, and Aidan was never officially diagnosed on the spectrum. He did, however, experience a significant delay in language development, necessitating speech therapy until almost age ten. But what really affected him - and still does - is his sensory processing disorder. He must have been miserable as an infant, toddler, and even a preschooler. It wasn’t until age five that he seemed to be somewhat at home in his body; he was finally talking and smiling more often than crying and yelling.

But his eating issues continued to get worse. Whereas I would call Nigel a picky eater, Aidan is a limited eater. A year ago, as he was nearing 13, I started to realize that it seemed to be a control issue with him - not to control me, but to have some control in his life. He couldn’t control that his dad, whom he idolized, lived 700 miles away. He couldn’t control that he had an autistic brother. But he could control the food that he decided to eat. So what started off as a sensory issue developed into something even more involved.

And it bothered me greatly, not just because I worried about his health and his growth. It bothered me that I couldn’t just cook dinner for my child and he would eat it. Even at age 13! It bothered me that he was a teenager and, like his brother, should have been eating me out of house and home (even though Nigel is picky, he still manages to eat a variety of foods, and in mass quantities). And it bothered me that Aidan would eat more food when he was with his father. I took him to see a counselor, and he fought me, saying, “You’re making me do something against my will!” I compromised, telling him that if he increased his dinner choices to seven things, one to rotate each day of the week, that we would stop going to the counselor. He reached that point within three weekly sessions, and although I followed through, he has since lapsed to five or six items on the rotating dinner menu.

So I surrendered.

I let go of my expectations about Aidan’s eating habits. I let go of my expectations about how he responds to having an autistic brother (hint: it’s not always noble or gracious). I had to surrender. I had to. And I thought that if he could spend more time year-round with his dad that he might start eating better when he’s with me, too.

*

He has been with his dad for over three weeks now. I’ve talked to him several times, and the last time I did he told me, with excitement and pride in his voice, “I’ve been trying lots of new foods, Mom! I’ve been eating a lot.” And I told him, choking back tears, that I was so glad to hear it.

And someday soon I will tell him that there is nothing I wouldn’t have done to help him to be as happy and healthy as possible. I will tell him that it’s okay that he’s not always glad to have an autistic brother, that I honor his feelings. I will tell him that I accept the fact that he eats differently. And I will tell him that I have become a more balanced person because of it, because of learning to surrender.

Aidan, age 9, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

I had this great idea many years ago. At the end of every school year, I would write a review of how that year was for my two sons, a separate entry for each, describing not only their progress but also their personality, their likes and dislikes, and things they said or did. As a writer, I figured that was the least I could do.

So, that idea lasted about two years. Life sort of got in the way, along with other writing endeavors. I had always meant to pick it back up again but never did. Then I started blogging, mostly about my children’s development, and I feel better about all those years that I didn’t write about the kids (although most of those years were documented in IEP paperwork). Their development is described in detail in over four hundred blog posts. I no longer feel like I should write about them individually once a year, because I write about them all year long.

But this year was a milestone year with Nigel starting high school and making some incredible social gains, and now that we’ve reached the end of the first year, I thought I’d recap the highlights:

September: Nigel advocated for himself for the first time at an IEP meeting and learned to safely and responsibly ride his bike to and from school independently.

October: Nigel turned 15 and wrote a guest post. Also, he and I had a difficult discussion about not learning to drive yet, he successfully used his cell phone for the first time when he had a problem with his bike, and he revealed that, after many years of self-loathing, he is learning to accept his autism.

November: Nigel, for the first time ever, joined a sports team, and my heart soared at his achievement. In other news, he prepared and drank a pizza smoothie.

December: Nigel’s language skills took a step back (or sideways) with some lengthy delayed echolalia, and then dramatically forward with the most amazing conversation I’ve ever had with him.

January: Nigel (with Aidan) took his first solo flight! A mere week later, I overheard his first unprompted thank you! However, the month ended on a sad note due to his needing to quit the wrestling team for unfair reasons, but he handled it with the utmost maturity.

February: Nigel attended his first high school dance, but he still exhibited some heartbreaking social vulnerability.

March: Nigel and I watched the movie Adam together and had a great discussion about it, and Nigel found his niche in his theater class, where he made some truly wonderful new friends. I got to meet some of them when Nigel attended his first play and I accompanied him, where I witnessed a beautiful spontaneous hug.

April: Nigel started shaving! And I experienced the wonderful novelty of enjoying myself in a restaurant with my sons and having a stranger compliment me on their behavior for the first time ever.

May: Nigel went off of his medication and has been doing an amazing job overall of self-regulating difficult emotions and managing his behavior. He also achieved the rank of Star Scout after six years of Scouting.

June: Nigel had a major seizure, his first. Then he had to say goodbye to extended family members and his long-time Scout friends before moving to Los Angeles to be with his dad.

As you can probably gather, Nigel’s growth this year has been tremendous. When I look back to his earlier years, still not functionally verbal at age five with extreme sensory and behavioral issues, I can’t believe all that he has accomplished. This year alone blows me away. It’s been a lot of work, with a great deal of assistance in various forms, but he has continued to learn and to succeed on his own terms, as I knew he would. I know there will be future struggles; he still requires constant assistance academically and will continue to need help with social issues. But we’ll take it on. My son gives me so much hope that I can’t wait to see what the next school year will bring. I know it won’t be easy (none of it has been), but ultimately, it will be good.

Nigel, age 11, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

When you’ve got a kid who chews things to bits (Lego, ice cubes, wood, hair, his own fingers) due to some extreme combination of sensory issues, OCD, and anxiety, you’re always on the lookout for ways to alleviate that. Medication helps, as does learning relaxation techniques. But sometimes, the bad habits stick around or the sensory issues remain. And even though he stopped pulling out his hair and eating it, the kid still needs to chew.

Enter Chewy Pencil Toppers from National Autism Resources.  These durable, flexible tubes fit over the ends of pencils (or thin pens) and provide deep pressure through the use of biting or chewing. I recently received a sample and enjoyed trying them out myself! I’m sure they will be very beneficial for Nigel, especially with the potentially increased anxiety due to moving and starting at a new school. Anything that would help relieve his poor, often bleeding fingers certainly has my endorsement!

Sometimes you’ve just got to get outta Dodge. And with the boys happily in L.A. for some time with their dad, that’s just what I did. I took a drive up to the Olympic Peninsula in Washington, jogged over to Rainier National Park (well, not literally), and then visited some friends in Portland on my way there and back. It was a great trip - a little retreat for myself. But when you take a trip alone, you often end up with some pictures that look like this:

And if you’re used to going to National Parks with your kids, you’re going to really miss them when you drive around one all day, and then again that night when you’re in the motel room by yourself. And since you were really looking forward to some time to yourself, it takes you by surprise that you’d rather have them with you instead. But then when you stop to think about it, you’re not that surprised at all. And you’re wishing that they were in this picture, standing on the bridge:

The rainforests are beautiful - lots of moss and ferns and old trees with pretty creeks gurgling by. Lush greenery and gorgeous wildflowers line every road, even the highways. This is what the Pacific Northwest is known for.

Next I headed over to the coast. Not being a reader of the books, I unwittingly found myself in Twilight territory. There is a rather large store in Forks, Washington, called Dazzled by Twilight, which I happened to drive by. I glanced at the life-size cardboard cut-outs of the characters lining the sidewalk, smiling as I thought of my sons and their disinterest. (Well, Nigel has disinterest. Aidan has disdain.) Closer to the coast, I saw “Welcome, Twilight Fans!” signs posted on little motels I passed and another souvenir shop devoted to the series. In fact, the photo below was taken a few yards away from the official “Twilight Tours” bus, which a young couple was waiting to board.

The next day, I drove to Mt. Rainier National Park, and at first I had no idea how lucky I was that it was a clear day. I later learned that the majestic mountain is often cloaked in clouds. As I rounded nearly every bend in the road I had to pull over to take a photo, gasping at this fourteener’s beauty. This picture really doesn’t do it justice.

After my cozy night’s stay at the lodge, I decided to stop at one last waterfall on my way out. Fortunately, there were others there at the same time, and I asked someone to take a photo:

But wait, there’s more for this Lowdown post! Months ago, my friend Jazzygal bestowed the Happy 101 award on me, and I’m finally listing the 10 Things that Make Me Happy. It’s something I always need to be reminded of, but I’m really needing it now, so thanks again, Jazzy!

1. spending time with Nigel and Aidan - watching movies together at home, reading, playing games
2. writing novels
3. enjoying meals with friends
4. reading an amazing novel
5. sleeping in
6. blogging
7. winetasting
8. traveling
9. savoring a piece of chocolate
10. being home when the boys are, but doing my own thing and just hearing their voices, happy doing their own things - Aidan on his X-Box Live and Nigel scripting the movie he’s watching - makes me so happy.

There you have it. I’m going to opt-out on the tagging this time, but if anyone feels like leaving a comment listing the things that make them happy, all the better! These days, with the boys gone and the stress of a big impending move hanging over me, I need all the happy I can get!

These goodbyes are just about killing me. Since school is out, I did what I usually do at the end of every school year - I write a thank you note to those who had worked with my son, telling them how much I appreciate all they’ve done. Only this time, it wasn’t a thank-you-for-the-great-year. It was an I-can’t-thank-you-enough-for-the-difference-you-have-made-in-my-son’s-life.

A few days ago I sent an e-mail to the Regional Autism Consultant for southern Oregon, who has known Nigel since his non-verbal days and worked one-on-one with him years before she took her current position. I think she has worked with my son for twelve years. So I began with, “You’ve been in the picture so long that it’s hard to come up with an adequate way to thank you” and proceeded to express my gratitude for all that she has done, including designing Nigel’s weekly social skills class (and recruiting other students to be in it) specifically for him. Her gracious response made me cry, of course, especially when I read “Nigel brought such wonderful perspective to the social skills group, he was so very open and honest and a very active participant which really made the group successful - I will miss him so very much.”

*

Last week, I took Nigel to his last Scout meeting, where they had a goodbye party for him. Being in this particular Scout troop has been so beneficial for Nigel, for many reasons. As can well be expected (due to terrible news stories about abuse in some Scout troops), a Scout troop is only as successful - and as good - as its leader. And I don’t see how there could possibly be a better Scoutmaster out there. We are so blessed with the troop that Nigel’s been part of for almost six years. Our Scoutmaster is by far the most patient person I’ve ever known. He also truly cares for Nigel. When the party was over and it was time to leave, the Scoutmaster said some generous parting words about Nigel and his progress as a Scout, and then he asked Nigel to stand at the door so that every Scout could shake his hand on their way out. I was so touched, so emotional, that I couldn’t even watch.

Our main consolation, which I keep reminding myself, is that we have close family that we will be able to see much more often in L.A. The boys can spend unlimited time with their father, who has lived there for over eight years. They have an uncle and two aunts there who adore them. And then there is their grandfather, who plans to take them to Thailand later this year. I have missed all of them tremendously over the years that we’ve been apart, and I’m so looking forward to sharing more of our lives with them. But as important as family is, kids - especially teenagers - need their friends.

As we drove home from the Scout party that night, Nigel said to me, “I don’t know if I’ll be able to find such good friends ever again.” And of course that really did me in. I croaked, “Oh, honey. I know that your friends here mean a lot to you, and you’ll miss them so much. But you’ll be able to find new good friends in L.A. And they will find you. Because you are a very friendly, caring person, and good people will always want to be friends with you. I really believe that, Nigel.”

He simply said, “Yeah.” But there was hope in his voice.

*

The boys have gone now. They are in L.A., barbequing and bodysurfing with their dad, while I remain in Oregon (for now) to sell the house. I have started sorting through things and packing, slowly but purposefully. Over the weekend I came across an assignment that Nigel had done in middle school, during a time when he was being bullied relentlessly. It was from around the time that he had taken his yearbook and scribbled on all the faces of the kids who had bullied him, and when I looked at it later I cried because there had been so many scribbled faces. This assignment that I found was a “time capsule” that the teacher said she sends to all the students when they graduate from high school, so that they can remember what middle school was like for them. It had items like “My favorite foods” and “My pets” listed next to a blank line. It listed “Friends” with a blank line after it to write your friends’ names on.

But instead of listing his friends’ names on the line, like most kids would have done, next to the word “Friends,” Nigel had written “many.” Even then, he believed that he had many friends. Even then.

Happy Father’s Day, everyone! I’m over at Hopeful Parents today, writing about - who else? My dad.

The Scene:  Interior suburban family home. A mother and her two teenage sons are seated around a wooden coffee table in the living room, playing the board game Risk. Her older son, who loves military history and geography, is rapidly gaining control of the Western Hemisphere. The mother marvels at the fact that he now has the patience to handle long, strategic board games. Her younger son, influenced by his Eastern European ethnicity and a recent interest in dictatorships, sets up Moscow as his home base and systematically conquers Asia. The mother hangs out in Africa and Australia as the two brothers conspicuously gang up on her. Secretly, she loves the fact that they are working together and considers it a bonus that the tediously long game appears to be winding down (or at least her role in it), although she has enjoyed the family time and hopes that her sons have as well. She smiles contentedly as she surrenders another territory.

Younger son: This may not be the appropriate time to mention this, but I can feel my first armpit hairs growing.

Older son (keeping his eyes on the board): Mine are longer than yours.

It seemed like it came from out of nowhere, and in some ways, it did. But lately I’d been noticing ambulances around town, even those without their sirens and lights on. And three weeks ago I commented on my friend Elizabeth’s beautiful post that the only child I’d witnessed having a seizure was not my own.

A few days ago, Nigel had his first tonic-clonic (formerly grand mal) seizure. He had been on the couch in the living room watching a movie, and I was reading in my office. I started to hear a repetitive banging noise coming from the living room, and I yelled out, “Stop the banging!” When it did not stop, I marched out to the living room. “I said to stop the banging! What are you doing?!” I yelled again, looking at Nigel, whose body was half-off the couch with his legs stuck under the heavy coffee table, banging it. I thought perhaps he was acting out a scene from the movie or laughing in an exaggerated way, but that was before I saw his face. I pulled back the blanket that had been covering him, and then all at once it hit me. The violent convulsing, the profuse frothing at the mouth, the eyes rolling back in his head: He was having a seizure.

I was terrified. My legs started shaking as hard as Nigel’s. I pulled them out from under the coffee table and placed them on the couch and shoved the blanket out of the way. With dread I realized that he was having great difficulty breathing and yelled out to Aidan to call 911 and bring me the phone. The dispatcher kept me calm while waiting for the ambulance to arrive. Nigel’s breathing alarmed me, but after the convulsions stopped, it seemed to come a little easier, although it was still ragged and rapid. The EMTs arrived, checked him out, and tried to insert an IV (which he fought off, even in his semi-conscious state).  Then they placed him on a gurney and wheeled him out to the ambulance.

I rode in the back with Nigel and Aidan rode up front. The EMT in the back asked Nigel questions and he answered them.  Later he would tell me that he had no memory of the ambulance ride or the first two hours in the hospital, even though he was conscious and speaking. I sat there behind my son as he spelled his name in the ambulance, berating myself for yelling about the banging when he was having a seizure. Of course, there would have to be some element of the experience for which I would feel guilt. How long had the seizure gone on before his legs got stuck under the table? Why was my first inclination to yell about it?

Three hours later, everything checked out clean at the hospital (the brilliant ER doctor said that because the CT scan was clear, he might not have had a seizure. Um, yeah, he really did. Guess you had to be there, eh, doc?), and after waiting almost an hour post-discharge for a cab, we arrived home past 2:00 AM. I put the boys to bed and tried for at least an hour to fall asleep, but each time I heard a noise (usually because of the cats), I jumped out of bed and went to check on Nigel.  My mind kept fixating on questions I had about seizures and how they would affect Nigel’s life. What does this mean for his future? What if he has one while riding his bike? Or in the shower? Where do we go from here?

I woke up exhausted and called the doctor’s office. His regular doctor was not in, so we saw another doctor in the practice who recommended a referral for an EEG and MRI. But, with Nigel moving to L.A. next week, there’s no point in receiving a referral here. We’re on our own to find one there as quickly as possible.

Except we’re not on our own. We’re part of this amazing and wonderful online community of families with special needs. So I contacted Elizabeth. And not only did she answer my questions and recommend her daughter’s specialist, she calmed my fears and provided empathy. And I am so grateful. I couldn’t help but remember a post I had written over two years ago about my fear that Nigel might develop seizures in his teens. It was only the third post I had written, so it didn’t receive any comments, but in it, I had asked for other parents’ experience and advice about seizures. And now, right when I need it most, I have it. We are truly blessed to be a part of this community.  

I still have many questions, most of which we won’t know the answers to until the testing is done, and even then, the results may be inconclusive. I still have a lot of anxiety. My legs are still sore from being so tense during the whole experience that night. I still have fears, but I’m trying not to focus on them. I’m trying to focus on the good and move forward, knowing that we’re not on our own.