Teen Autism

I’ve been getting a lot of “How are you?”s lately from friends and family. It’s sort of like when I was going through my separation twelve years ago - the same concern is there, the wishing they could help, the commiserating over things not going according to plan. I had hoped to share some of the school year custody with Nigel and Aidan’s dad by moving to where he lives, and that, as most of you know, didn’t happen. At this point, the bottom line is nothing new. I’ve been doing this (full-time single parenting) for nine years, and I guess I can just keep doing it. But I will tell you this - it doesn’t get easier. The boys don’t get up much during the night now of course, but the days. Oh, man, the too-full days just about kill me. The strain just builds and builds. By now I feel like I’ve got a piano on my back.

For most of this year (and some of last), I had been searching for a life coach, just wanting help in figuring out how to approach my life so that I would feel less overwhelmed. I’d read about various life coaches on friends’ blogs and would come across a few online, but none of them felt right for me. One day a few months ago, Eithne left a comment on one of my posts. She linked to her website, and as soon as I clicked over, I knew that she was the one.  Through her excellent coaching I am learning to prioritize my life according to what I value, and I definitely feel that I now have the tools to enable myself to feel less overwhelmed. To anyone looking for a life coach, I highly recommend her!

She also helped me to figure something out. You see, several months ago, I had this gut feeling. I just knew that it was the right time to put my house on the market. There was no doubt in my mind, and I felt confident in doing so. It was all about the timing - I knew that I was supposed to do it. But I thought it was because I was supposed to move to L.A. this year. I thought that the timing was right for that. Of course, the house didn’t sell in the time frame that I needed it to. And at first I was crushed - how could that not come together? I just knew that the timing had been right to put it on the market. I had been so sure. But wait. It turns out that the timing was right to put the house on the market when I did. Why? Oh, you’re going to love this! Because I am now dating my real estate agent! That’s right! After not dating for almost two years, it’s so nice to enjoy that again. And it’s great to have that gut feeling turn out to be right after all.

Last, but certainly not least, I recently received a lovely new (or new to me) blog award:

Isn’t it cool? I love the design. And I also love the cool blog from whence it came: Big Daddy Autism. Thanks, Big Daddy! If you haven’t checked him out yet, head on over there for some much-needed humor and some thought-provoking posts.

Apparently in accepting this award, I must reveal seven things about myself. So I’ll follow Big Daddy’s example and mention the following:

1) I have two tattoos, a tiger and a Celtic knot. The tiger has been on my arm for ten years, and it’s really beautiful. During the summer I receive many compliments on both of them.

2) I have written and published a novel, and I’m (slowly) working on my next one.

3) My eyes are green with gold flecks in them.  Sometimes they appear to be hazel.

4) I have driven the same car for over ten years, and it feels like an extension of myself. I love it like I would a horse.

5) My favorite hobby is winetasting. So much so that I wanted to put a bocce court in my backyard because it’s the only sport you can play and not have to put down your wine glass.

6) I have sustained three major injuries from one of my other hobbies - snowboarding. I can assure you that no wine was involved, although it certainly was afterward.

7) I drink green smoothies every morning for breakfast. A green smoothie in the morning and a glass of wine at night - it’s all about balance!

There you have it. I’d do the tagging thing, but I have a big IEP meeting tomorrow morning (more on that next week), and must use the rest of my evening to prepare. You know how it is.

Cheers, everyone!

…home again, jiggity-700-mile-jig.

Please extend a warm welcome-back to Aidan, who turned 14 on the 15^th (and is excited about his “golden” next year):

and Nigel, who acquired a hand-me-down laptop and iPhone 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 Aidan 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 to let them know what happened, or rather what didn’t. 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.

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 never thought it would be like this . . .

That my child would cry so much for so long

Or have great difficulty in learning to talk

That one would shriek and writhe on the floor because someone flushed a toilet or turned on a coffee grinder

And the other would only eat four foods and couldn’t learn to ride a bike

I never thought that my children would have special needs

That I would be a single parent

That I would have to attend so many meetings and therapy appointments

That I would have to mastermind my son’s education

That I would homeschool him for eighteen months

I never thought that my older son would wander and get lost

And that my younger son would have to help look for his older brother

Or that I would still grieve whenever I heard young children talking . . .

I never thought my heart could be so full

                                                    *

I never thought it would be like this . . .

That one child would learn to read at age three and the other at age nine

That the one who lacked imaginative play would someday love fiction

And the other, who couldn’t hold a pencil, would become an artist

I never thought it would be so monumental to take a nine-year-old into a grocery store without a sensory meltdown

Or that a fifteen-year-old’s first unprompted ‘thank you’ would be so gratifying

I never thought that one son could play on a team sport, attend a concert, or enjoy the theater

Or that the other son would design his own video games and become a voracious reader

I never thought anything could give me as much peace as when they get home safely each day

That there would be so many “little” things to celebrate

Or that through my sons I would meet such wonderful friends of my own

I never thought that the emergence of voice inflection would be such an unexpected gift

Or that I would weep with joy when my son made a new friend . . .

I never thought my heart could be so full

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.

I’ll bet you have A-Files too. Read all about mine over at Hopeful Parents today.

Sometimes, when you’re the parent of a teen with autism, you have to write letters like this:

Dear [Regional Autism Consultant] and [Nigel's speech therapist],

I hope this finds you both well. Nigel continues to benefit from your social skills class, and I want to thank you both for doing it. I wanted to run something by you that I think would be an important addition to the regular social skills teaching. Today I had a meeting with [his case manager], and she mentioned that a student told her about a situation in which Nigel was being taken advantage of and laughed at. During lunch, a group of students were encouraging Nigel to tickle random people, and they would laugh when he did it. As you might remember, Nigel has been targeted in this manner before, and it always pains me to hear of it.

I would be so grateful if you would work something into the social skills curriculum to help him learn to recognize these sorts of situations when people have fun at his expense by telling him to do something inappropriate. He doesn’t realize that it’s inappropriate or that he could get in trouble for touching other people. He thinks he is making friends this way, but the “friends” are laughing at someone with a developmental disability. They know that Nigel lacks social awareness, and that’s why they target him. They are not innocent little kids anymore. And yes, Nigel has been told before that real friends will not get him to do things that he shouldn’t do and then laugh. But he needs constant reminders from people other than his mother. He needs to be taught how to recognize these sorts of situations. If a random student notices and takes the time to tell a staff member about it, then it’s pretty significant. And I’m sure it’s not the first time, even though it was the first time that was brought to our attention (that I know of).

So I think it would be helpful for Nigel to have some reminders about what’s inappropriate at school, and that if someone tries to get him to do something and they are laughing about it, they probably don’t have his best interests at heart, and they should be avoided. I tell him these things, of course, but I think if he hears it from other adults (or peers who care) and is taught how to recognize those situations (perhaps through roll-play), then he might start to understand.

Thank you so much for your time and the work you do with my son.

Best regards,

Tanya Savko

And it breaks your heart, again and again. You believed that things were going well socially at the high school, that the other kids had matured since middle school, that these things weren’t happening any more. You hoped that no one would be insincere with him at his first dance, and you wonder if they were and your son just doesn’t have the social awareness to realize it.

Sometimes, as the parent of a teen with autism, it hurts. You’ve been advocating for over twelve years since the diagnosis, and you still have to do it. You still have to manage your pain and quell your anger. You have to keep moving, keep doing, keep hoping. You have to keep being the parent of a teen with autism.

And no matter how much you love your son and the wonderful person that he is, no matter how far he’s come and how much he’s achieved and how high your hopes, it still hurts. For both of you.

It used to be, up until less than two years ago, that my favorite time of day was in the evening, when the boys went to bed, and I had an hour or two before my own bedtime. The day was over, and I had a sliver of time to myself to read, meditate, write (if I had the energy), or watch a movie. And it wasn’t just the time to myself that I loved, it was the security in knowing that my children were safe and (usually) well, and that we had made it through another day. All was right in my little corner of the world.

I still love the evenings and the sense of peace and comfort that they bring. But my favorite time of day has changed. It’s now 3:40 PM. That’s my new serenity time.

I get off work at 3:00 and head home, stopping to pick up the mail at our local post office, since I am among many in our small town who do not have mail delivery to our homes. I am usually home around 3:20, alone except for the cats, who rub against my leg to welcome me (or, as I’ve read, to mark territory, but affectionately so). I set my things down and go put on my slippers as part of my little transitional routine. Then I sort and read the mail until 3:30, when Aidan arrives. He comes through the front door, calls out “Hi, Mom,” and I go over to give him a hug and breathe in the scent at the top of his head. Home. One down, one to go.

Usually within ten minutes, by 3:40, Nigel comes through the back door, after he has put his bike away in the shed.  As soon as I hear that door open and shut, I breathe a sigh of relief. The route is less than two miles, but any number of things could go wrong. Once, a few months ago, he had been delayed due to bike problems and called me on his cell to ask me to come and get him. And so, when he wasn’t home by 3:50 one day last week, I thought at first that perhaps it was because of bike trouble again. I waited for the phone to ring, but it didn’t. When the clock struck four, I was out the door. I instructed Aidan to man the phone and to call me on my cell if Nigel called or came home.

I drove his usual route, checking down side streets to see if he had stopped to talk to someone or pet a cat. Then, about a third of the way, I saw him riding toward me (thank God), and I pulled over. He came up to me, breathless, and launched into a monologue about how he’d stayed after school to talk to his new drama teacher about a play that he wanted to write and produce based on Honey, I Shrunk the Kids. He had that dazed, New Obsession look in his eye, and I groaned inwardly. In his present state, he could not fathom that I had been worried, that he should have called. Midway through his prop ideas, I gently cut him off, saying that we needed to get home and he could finish telling me there. “Okay,” he said, and started off. “But take your time! We’re not racing!” I yelled out quickly.

We got home, and as I climbed out of the car, he rode up and started in again about the play, right there in the driveway. “Put your bike away, and let’s go inside to talk about it,” I said gently, but business-like. And he did.

I got in the house, still feeling the uncomfortable effects of the adrenaline, and called out to Aidan that Nigel was back. I collapsed on the couch, and he came inside a moment later. I stood in front of him and put my arms around his unbending frame before he could start talking. “I’m glad you’re home safe,” I said. “I was worried because you were late, and you didn’t call to let me know.”

He got it. “I’m sorry,” he said sincerely. It was one of the rare times he’d said “I’m” in front of “sorry.” He said that he got so excited with talking to his teacher about his ideas for the play that he didn’t think to call. Of course, I’d figured that’s what had happened the moment I first saw his face, lost in a new obsession. I know that look.

He drank some water then, and sat on the couch to finish telling me his ideas. After a few minutes, he got up and announced that he was going to his room to start writing the script. I sat there on my couch that I love, listening to the sounds of my boys happily preoccupied in their rooms. Home. My favorite time of day might have come a little later that day, but there it was. I sat and breathed deeply, enjoying my moment of peace, security, and serenity.

Remember Silly Putty? You could pull it apart slowly, and it would keep stretching and stretching and stretching. But if you tried to pull it apart really fast, it wouldn’t stretch. It would snap.

Sometimes I feel a lot like Silly Putty, trying to stretch to accommodate all of the elements of my life. But I think that the hardest part for me, besides my sons’ father living far away, is being pulled in two directions trying to meet the needs of both of my boys. I feel like I’m just stretching and stretching. Most of the time, I can keep stretching, and I do. But sometimes, too many things that require my attention happen at once, and I reach a breaking point.

Take last weekend, for example. Nearly all day Saturday was spent doing Nigel’s Boy Scout event with recycling Christmas trees. We got home from that, I made dinner, cleaned up after dinner, and started doing some work that was due for a client. I figured I could finish it by Sunday afternoon before heading out to the animal shelter to do the weekly volunteer work that Nigel needs for a Scout requirement. Then we’d get home, I’d make dinner, fill out some paperwork that needed to be done, and that would be the end of the weekend. No down time. I felt really stretched.  

So I was sitting at my computer, working on some spreadsheets, and Aidan walked in to ask me to take him to the mall tomorrow so that he could trade in some old video games and get a new one. I sighed, trying to avoid snapping. I felt like I was being pulled apart too fast. I started to complain about how busy I was, being gone all day at the Scout thing and having work to do, and the animal shelter tomorrow, and more work, and . . . Aidan’s face fell. He started to walk away.

And then it hit me. Again. I do so much for Nigel. He requires so much of my focus and time. And Aidan asks for so little. How could I not do this for him? All I needed to do was stretch a little more, to make a little time for my second son, who so often feels like second fiddle.

“Wait, honey,” I said. “I’ll be able to fit it in. We’ll go right after Nigel and I get back from the animal shelter. And after the mall, we’ll go out to dinner, okay?”

“Okay. Thanks, Mom,” he said, his face brightening some.

And that is what we did. Sunday afternoon, Nigel and I got back from the animal shelter, and Aidan had his bag of old games all ready to go. I changed my clothes for dinner, then we drove to the mall and exchanged Aidan’s games for the new game that he wanted, and he was happy. We went to the restaurant, and Nigel, without prompting, actually thanked the waiter when his plate was set in front of him. That’s twice in one weekend, for anyone keeping track!

And I’m so glad that I stretched myself a little more. It’s often a huge challenge doing this on my own, but it’s worth it to keep stretching. It’s worth it to make sure Aidan knows that he’s also my priority. Fortunately, I’m a lot like Silly Putty. When it snaps, you can easily connect the two ends together again.