The Lowdown, Vol. 3

Since the boys are gone this week for Spring Break (visiting their dad in L.A.) and I am feeling the usual disjointedness with them away, I figured it was time for another edition of Personal Posts. Because I’m sure you were all waiting for it with baited breath, right? No? Okay.

So, we’ve lived in our current home for almost seven years, and the carpet is sporting seven years’ worth of stains and hard living (with two boys and various pets trampling it), so I’m having it replaced. I had hoped to have it done while the boys were away, but it turns out that the installers are on Spring Break as well. So it’s going to be done next week, and I’ve spent all of this week moving everything out of the rooms and closets – seven years’ worth of books, DVDs, papers, Lego, clothing, Nerf guns, action figures, cars, stuffed animals, and whatever else I stuffed in our back room, to be sorted later. Then I touched up the walls in the rooms that will get new carpet, and I used up a half gallon of paint just “touching up” the boys’ rooms!  Not to mention half a container of Spackle. God help me, boys are hard on a house!

But those boys are also the loves of my life, and I enjoyed talking to them on the phone yesterday. They are having a blast, spending time with their dad and visiting with L.A. friends, and they even got to go to Universal Studios! Neil was ecstatic over the Jurassic Park ride, of course. Adam, with his vestibular issues, preferred the Mummy ride. They had flown down again, their second solo flight, and everything went well. When it was time to board, I waited with them in line for a few minutes, and as they neared the ticket-taking agent, Adam said gently, “Mom, I think we’ll be fine now. You don’t need to wait with us.” And Neil chimed in, “Yeah.” So I tried not to cry and hugged them, saying, “Be safe and have a great time. I love you!” And as I stepped out of the line, an older lady a few feet behind us said good-naturedly, “You boys be good now!” And right then, at that moment in the airport, I felt like a regular parent. A regular parent saying goodbye to her teenage sons as they boarded a plane, trusting that everything would be fine.

I smiled and waved, watching them pull their carry-ons. And for the first time, I felt normal. I know – we shouldn’t use that word. I even discourage Neil from using it when he describes non-autistic people, because I want him to think of himself as normal too. But the nonchalant way that woman said what she said, and the way I felt just knowing that I didn’t have to worry, I can’t think of another word for it. I guess the fact that I was aware of feeling that way negates the normalcy of it. But I don’t care. I felt normal, or what I assumed felt normal, and it was great, that little glimpse. And hard-won. I sat at the gate for a while longer, and then I watched the plane take off, taking my beautiful, almost-grown boys with it. And although I feel disjointed with them away, somehow it feels a little more manageable this time. A little more normal.

The Idea Man

Image credit: Melissa Balkon

Recently, someone found TeenAutism by searching “Can autistic teens have obsessive thoughts?” and probably stumbled upon the entire Obsessions category over there on the right. Because in Neil’s case, you might as well ask, “Is there snow on Mt. Everest?” and the answer would be all the time. And while of course not all autistic teens have obsessive thoughts, it’s probably safe to say that many do.

At this point, I should probably define what I mean by “obsessive thoughts.” I am not referring to what is commonly called a “specialist subject.” Neil has those, too. Those are things that he has a strong interest in, usually over a long period of time. Things like Lego, Disney, dinosaurs, space exploration, time travel, science, geography, history, and movies. Neil has been intensely interested in all of those things since he was very young. These interests tend to ebb and flow, with him focusing on one or more at a given time, on some sort of a rotation. Two things – Lego and movies – have been a necessary part of his daily life for many years. But I wouldn’t say that he is obsessed with them, even though he loves them.

“Obsessive thoughts,” at least in Neil’s case, generally revolve around his ideas. Neil is a classic “idea man.” His first great idea was putting his wooden alphabet blocks together to spell the things he wanted – because he couldn’t talk. And his ideas only took off from there. Now, he has ideas about everything. But they often become obsessions – some good, some bad. Take, for example, his science-related obsession with creating fire using a magnifying glass a couple of years ago. It did not end well (sorry, not divulging details), and I’ll never forget his remorseful plea – “Don’t obsessions ever go away?” as he voluntarily surrendered his collection of magnifying glasses.

Potentially good obsessions include his recent idea for a school play based on Honey, I Shrunk the Kids. He wanted to call it “Principal, I Shrunk the Students.” The problem was that he became so obsessed with the idea of it, centering the entire play around a Lego mini dinosaur that he wanted to use as a prop, that he lost all track of time and got home from school late, causing me to drive around looking for him. The play idea, like most of his obsessive thoughts, fell by the wayside within a few days. Seldom do they last more than a week, which is why I call them Obsessions of the Week.*

Why do they fall by the wayside?* It’s simply a lack of executive function. Neil does not have strong executive function skills, so he is not able to follow through with most of his ideas. He becomes obsessed with the possibility of them, but he does not have the ability to organize his thoughts and plan out his actions to make his ideas reality. I have tried teaching him how to outline projects on paper, but he is not able to generalize from one thing to another, nor is he able to work independently for any length of time. So, most of his ideas and projects are abandoned after a few days.

Not surprisingly, this often causes him much frustration. A few weeks ago, he had another idea which turned into an obsessive thought. He wanted to plan a trip to Disneyland for all of the students in the special education program at his high school. The problem was that he wanted to do it for Spring Break, which was less than three weeks away. He went online and found out the cost of Disneyland’s admission ticket, excited because it was less than a hundred dollars. I had to remind him about transportation costs for 30-some students to travel 720 miles by bus, hotel rates, and food. The adjusted cost was much higher, and I tried to explain to him that nineteen days was probably not enough time for the students and their parents to come up with the money. Then he proclaimed that they would do car washes and bake sales, and I calculated for him how many cars they would need to wash or how many cookies they would need to sell each day to raise enough funds for the trip. He suggested that they should wash cars on weekdays, during school, not just weekends. I didn’t even go into the fact that seasonal timing was not on his side – a car wash in February in Oregon? But he would not let it go. He was obsessed; he went on about it for a week. And no matter how gently I tried to let him down, he could not comprehend that nineteen days (or twelve) was not enough time to plan a trip involving fundraising. Finally, I think his sped teacher at his school was able to get him to realize that something of that scope wasn’t going to happen when he wanted it. He came home, thoroughly dejected, typed the following on his computer, printed it out, and handed it to me: I might as well just accept and pay for my mistake. I’ll never again make new ideas. Here is an excerpt from The Raven by Edgar Allen Poe that I’ll say before I go into self pity: “And my soul from out that window, that lies floating on the floor, shall be lifted, NEVERMORE.”

The good news is that his teacher is helping him to plan an end-of-the-school-year day trip to a local attraction, so he’s feeling a lot better. And hopefully the experience will help him to realize that we can have great ideas, but unless we allow enough time to organize and plan for them, they’re only going to be obsessive thoughts. And for my idea man, with all of his marvelous ideas, that would truly be a pity.

*Update: A few years after this post was written, Neil was diagnosed with bipolar disorder, and it became clear that some of these “Obsessions of the Week” occurred during manic episodes.

The Play’s the Thing

I come from a family of theater enthusiasts, myself included. And although I am the only one of four children never to have starred in a play, I was always happy to watch them. Enthralled, actually. A good production is amazing to see, and even better to share.

So I always wondered if my son, now fifteen, would ever be able to enjoy seeing a play with me. In the past, it was out of the question. His sensory issues due to his autism and his need for frequent breaks would not have made a play possible. He would have never made it to intermission. But his love of movies has sparked a recent interest in theater, so he started taking a theater class as an elective. And when comp tickets for a student-written play were given out to his class, he was motivated to go.

We ran through a little social story beforehand to prepare him – must not talk or make any noises during the play, must not get up before intermission unless it’s an emergency, etc. The theater class students were to sit in a reserved section of the theater – the first three rows. I urged him to sit near the aisle in case he needed to leave, and then I went to find a seat several rows behind him. I loved watching him choose his seat in the ten minutes before the play began. First, he sat in the third row near the aisle – good, I thought. He stayed there for a few minutes, and then he got up and nonchalantly moved to the middle of the front row. Probably not the best choice for him. He seemed a little uncomfortable there, and sure enough, he got up after a moment and moved again. Then Goldilocks settled in the second row, a few seats over from the aisle. Well done, I thought. And there he stayed.

The lights dimmed, and the play, a musical adaptation of The Lord of the Flies (yes, I said musical), began. I was highly intrigued to see how the songs would be handled, and I must say that I was quite impressed. This was definitely not a comedic musical; the songs were well written in a dramatic tone and fit seamlessly in the course of the story. And what a talented group of young actors and singers! The boy in the roll of Ralph had an incredible singing voice – I could have listened to him for hours. All of the students amazed me – the set was admirable, and the performance was flawless.

At intermission, Neil got up and I met him out in the aisle, where he quietly told me that he was going to the bathroom. I told him how well he was doing and went back to my seat. Neil came back a few minutes later and returned to the same spot in the second row. He turned around and gave me a little smile, and my heart soared.

When the play ended, he applauded with everyone else and then came back to find me. I could tell that he was a little worked up, and I stuck close to him as we filed out of the theater. We entered the foyer, and all the actors were out greeting people. Neil walked toward the actor who played the character Piggy, held his (own) arms up, and said triumphantly, “It was magnificent!” I smiled, not remembering when I last heard so much emotion in his usually stoic voice. Piggy thanked him and said, “I’m so glad you could make it!” My son then introduced me to the talented boy, a senior, who had adapted the play and written the songs, and had starred in the roll of Jack. I shook his hand and congratulated him, telling him how amazing it was. Inside, I marveled at all these wonderful kids who had befriended my son, a freshman with the different speech patterns, sensory issues, and social mannerisms of autism. These kids were so genuine, so sincere. They welcomed him as one of them.

I asked Neil if he was ready to go. I could tell he was a little amped up, and even I was starting to feel a little claustrophobic. Things had gone well, and I wanted to get home and relax. “Wait! I want you to meet Ian,” he said, looking around. How did he know all these kids?! This was a side of him I had never seen before! And then, as if to illustrate that point exactly, he suddenly called out, “Ian!” and threw his arms around the boy who had played Ralph, the one whose voice I loved. Neil gave him an immense hug – a victory hug. And Ralph/Ian hugged him back, smiling and thanking him.

It was the first time I had ever seen my son initiate a hug. All his life he’s patiently – albeit stiffly – accepted our hugs, indulged us. I’ve always said that hugging Neil was like hugging a surfboard, and the taller he gets, the truer that is. Once, when I surprised him with homemade chicken tacos (his favorite dinner), he tackled me with a wrestling move that literally took me to the floor, but I’d never seen him solicit a real hug in his fifteen years.  And now there was this. This perfectly executed, wonderfully appropriate, well-received hug. And I got to see it happen, right before my eyes. It was beautiful, something I didn’t know I’d ever see.

“This is my mom,” I heard my son say. I felt like I was in a dream – people talking and moving all around me, creating a sort of buzz that put me in a hazy state. And I was overjoyed, just filled with emotion, choking back tears as I smiled and shook the hand of yet another talented young man who obviously means a lot to my son. I told him how much I enjoyed his singing; I wasn’t able to get much else out.

We left soon afterward, walking side by side to the car in the cold night air. Neil exclaimed how great the play was, and I was so happy to have enjoyed it with him. I breathed in sharply to fend off my joyful tears, thinking only of the wonderful gifts that were bestowed upon me that night – watching a play with my son and witnessing a most glorious, unexpected hug. Every day with my son I learn that the simplest things are often the most profoundly experienced.

Image credit:  weatherbox

The Year He Was Indiana Jones for Halloween

The Scene: Interior of suburban family home. A mother is cleaning out the closet in her office. Storage boxes – some opened, some closed – surround her where she is seated cross-legged on the floor. She holds several papers in her hand and emits a chuckle as she reads things that her autistic son has said over the years. He started putting two words together at age five and gradually, with time and therapy, increased. She marvels at his progression from “Green is in the finger,” said at age 6 when he noticed green paint under his fingernails, to “If it gets too cold or too warm, then I would call out for you,” said at age 10 while his bathwater was running. But his lifelong interest in geography and history produced some of his most memorable quotations. The mother laughs as she discovers her scribbled notes from when her son wondered, at age 8, “Does Canada speak Leafish?” as well as the following discussion that took place three years ago, at age 12:

Son: Would it be offensive if I was Adolf Hitler for Halloween?

Mother: Probably to some people.

Son: What about Japanese Naval General Isoroku Yamamoto?

Mother: The one who bombed Pearl Harbor?!

Son [pauses, considering]: Mussolini?

Re-Evaluating

I used to love Magic Slates when I was a kid – those black wax drawing boards with gray plastic sheets on top. Not so much because if I messed up, I could start over, but because I could adjust my drawing as I went along. If I started at the top and worked my way down, I could lift up the film a little bit to make changes. Nothing was set in stone.

And so it is with behavioral medication. If a certain type isn’t working, you can try another one. If the dose doesn’t seem right, you can increase or decrease it. And when you think you’ve reached a point where it’s no longer necessary, you can stop taking it. Or, you can ask your mom for six months until she agrees.

Neil had an appointment with his psychiatrist on Friday afternoon. As we often do in that office, we waited for quite some time before she opened the door to the waiting area. And then she called in someone else whose appointment, we learned, had been scheduled forty-five minutes before ours. I looked at the doctor, and she suggested that we reschedule, which I got up to do. I was shocked to find that she had an opening just a few days later, and we took it.

We got back in the car to leave, and Neil began his negotiating process. He’s been doing this with me since at least October – telling me that he wants to stop taking the medication, that he doesn’t think he needs it anymore. And I respond the same way, telling him that he feels this way because the medication is working. But this time was different. This time I thought about the fact that he has been on the same medication for fourteen months, and in the last twelve months, we have not increased his very low dosage. During that time, his height has increased by five inches (!), and his weight accordingly. At this point, the medication is probably having minimal effect. And even though it helped him when he really needed it, I’ve never felt comfortable with him having it in his body, and I’ve looked forward to the time when he could discontinue taking it.

And I think that the time has come. He has enough medication left to gradually wean himself off of it for the next three weeks. Half of that time is Spring Break, so it will be a low-stress time for a transition. And we’ll be checking in with his doctor tomorrow to confirm our plans.

What’s comforting is knowing that, as with my childhood toy, we can always start over. If it turns out that we were a bit premature and that Neil still needs the mood stabilizer to help regulate his behavior, we can always have him start taking it again. But we wouldn’t know unless we tried, so we’re going for it. He thinks he’s ready, and now, so do I.

Image credit:  foxumon

Gravity Pulls You In: A Review

I couldn’t wait for Gravity Pulls You In to come out, and not just because I know several of the contributors (although that was part of the reason, of course). It’s because the very idea of this book – a collection of essays and poems written by different parents of very different children on the autism spectrum – is unique and remarkable.

Kyra and Vicki have done an amazing job of editing and sequencing the contributions; the essays and poems flow into one another with the grace and beauty with which they were written. Each piece is an integral part of one of three sections: “Notes from Autism’s Edges,” insightful writings about the experiences of and observations on being the parent of a child with an ASD; “String Theory,” emotional offerings on the connections we have with our children; “And the Shoes Will Take Us There,” inspiring pieces about where we have gone with our children, and how we got there.

They are all beautiful, all universal. I found myself alternately laughing and crying my way through the book, all the while nodding my head. This is quite a journey we share. Our experiences may well be different, but we can identify with all of them. We empathize, we understand. And several times I felt like I was reading about my son, as if I had written it. As if this fellow parent had looked into my memories and said, “Yes, I’ve been there too. You are not alone.”

Gravity Pulls You In is a wonderfully touching anthology that I highly recommend to anyone whose life is affected by autism, whether a parent, relative, friend, neighbor, teacher, or therapist. This book is the parents’ perspective – what we think and believe, how we feel, what we do, and why. I’ve read many autism-related books over the years since my son’s diagnosis. Almost all of them I enjoyed, but only a few found a permanent home on my bookshelves. The rest have been given away to others who might also enjoy them or learn from them. But not Gravity Pulls You In. It’s staying right here. It’s that beautiful.

Watching Adam

Ever since the movie Adam came out on DVD, I’ve debated watching it. I was curious but skeptical. I wondered how realistic it could be, or how stereotypical, how formulaic, or how Hollywoodized. I feared that it might be contrived, either an Apergerized, Rainman-esque “autistic-people-are-savants” portrayal, or a glossy “people-with-Asperger’s-are-quirky-but-they’re-just-like-everyone-else” feel-good portrayal. And, having watched it last night, I must say that there were a few implausible things I noted, but I could have been wrong about them. After all, Neil does not have Asperger’s. Some areas of his development have differed from the characteristics of AS. But these days, there are plenty of similarities.

In any case, this is not a review of Adam. This is a post about what happened when I decided to watch it. With Neil. Yes, I took a leap. I’ve been taking a lot of them lately, trusting that I’m doing the right thing. When I rented it, it was with the intention of watching it alone, but given Neil’s interest in relationships, I thought it might be good for him to see the film, and then we could discuss it and how it relates to him.

And discuss it we did. My son said so many profound things that I was constantly choking on my emotional reactions, trying not to let him see how his words affected me. With the movie, he took it all in. At times, such as when the two main characters were in bed together, he would avert his eyes, and I told him that it was a PG-13 movie, and I didn’t think we needed to be concerned about things going too far on film. Neil said, “It’s not that. I’m just afraid that he’s going to do or say the wrong thing and mess it up.” And I died inside, thinking of all the times in my son’s everyday life that he must feel that way about himself.

Neil noticed what difficulty Adam had in a restaurant, and that prompted a discussion about Neil’s own sensory issues. He remembered how hard it was for him to go into public restrooms because of the air hand driers. “They were like screaming banshees,” he said. And I pointed out that he learned how to filter that sound. “Yeah. They’re still loud, but I can handle them. It seems like Adam couldn’t handle the sounds in the restaurant,” Neil said, and I could hear some self-confidence (or was it relief?) in his voice that he had progressed to a point where he could handle being in a restaurant. And, Neil was quick to point out, he’s an extrovert who wants to do social things, whereas Adam is definitely an introvert and experiences much anxiety about doing those things. Neil may share the lack of social skills, but at least he is motivated to be social, and this made him feel good about himself. He also commented on a scene in which Adam becomes angry and does not deal with it well, raising his voice and throwing things. Neil said that sometimes anger feels like “a nuclear bomb going off” and “it’s so hard to control it.” But he also realized that he is learning to control it, and that, at fifteen, he is doing a better job of it than Adam.

A couple of areas really seemed to hit home with Neil. One was the focused talking about “specialist subjects.” For Adam, it was telescope facts and local theater history. For Neil, it’s a range of all his favorite movies, military history, and his favorite authors (Jules Verne and H.G. Wells). In this area, he is much like Adam—not realizing when he’s going on too long or noticing that he’s monologuing and the person is bored. Neil believes that he’s got this area under control because, in his social skills class, he’s learned to ask the person if he should continue talking about something. “And if they say ‘yes,’ I do.” But he doesn’t have the awareness to realize when he’s been talking too long and the other person is just being polite.

Also, Neil totally identified with the big picture social issues. “Normal people usually don’t get different people,” he’d say. Of course, many times I’ve said to him that different people are normal too, but that doesn’t seem to make sense to him. However, toward the end of the movie, he did say, “Eventually, people learn to understand people like . . . us.” I wasn’t sure if he hesitated because he was trying to remember Adam’s name, or if he was processing the fact that he identified with him. It’s been very hard for him in the past, although recently he’s felt better about it.

Overall, I’m glad I watched Adam with Neil. It’s true that seeing some of the behavior on film was hard for him, but I think that makes him more aware of it. If he knows what the challenges are, he can face them armed with that knowledge. In addition to that, seeing this movie prompted a discussion about the importance of jobs, and that if you get tired of doing your job after just two hours, you can’t say, “I’m done” and then leave. “I have to stay at the job so that I get the paycheck and can support myself,” Neil said. Halle-freakin-luiah! This understanding is a long time in coming. A long time. For years, he’d say that when he grew up he wanted to be an inventor of time machines and didn’t want to do any other job because it would bore him. I would suggest to him that he might need to do another job while he was inventing the time machine so that he would have money to pay for his food, etc., and this concept was completely lost on him. I don’t know what it was about watching Adam that changed his thinking, but it did, and I’m very glad. I think both of us are a little more optimistic about his future now. And that’s saying a lot about a movie I wasn’t sure I wanted to see in the first place.

One Way of Putting It

The Scene: Interior of a small SUV. A mother is driving her teenage son, who has autism, around to several different stores looking for the DVD of the original 1973 version of Charlotte’s Web. He is 15 and it is one of his favorite movies. The mother silently wonders if there are any other teenage boys who love Charlotte’s Web as much as he does. She marvels at his innocent nature. They are stopped at an intersection and the son begins reading aloud the bumper stickers on the car in front of them.

Autistic teen: It says, “Politicians and diapers get changed for the same reason.”

Mother (pauses, wondering if she’ll have to explain the meaning by using a phrase that includes the words “full of”): Do you understand what that means?

Autistic teen: That they are both stinky.

Emotional Rescue

Emotionally, we take flight when the strength of our passion exceeds the strength of our blockages; the floodgates open and we are free to feel fully.   —Daily Om

It wouldn’t be stretching things to say that I’ve been an emotional wreck lately. I’ve been pushing myself to meet deadlines both at work and at home, and it frustrates me to no end to not be able to meet my goals. I try not to let the reality of my situation—being a full-time single parent—get in the way of what I want to achieve, but the undeniable fact is that it often does. Combine that with my increasing concern over Neil’s academic/work challenges and his social vulnerability, and it’s no surprise that I’m overwhelmed.

So, everything has been on the surface lately, emotionally speaking. Every day has been like a marathon. This week could not end soon enough. The boys and I got home Friday afternoon, did a bunch of chores, ate dinner, and then Neil and I went to our local grocery store for a few things. First, we recycled our bottles and cans at those machines that count and crush them and dispense receipts for the deposit refund. At one point, the plastic machine got stuck, and I took a leap of faith and instructed Neil to go inside the store and tell an employee. Okay, he said, and he went and did it. I had never had him do that before, but he certainly knows how to ask for help while looking for a certain DVD at the video store, so I figured he could do this. Moments later he returned and said that someone would be out soon to fix it. My heart nearly burst. I had no idea how it actually went down in there, but the end result was that Neil got his point across. A guy came out in a few minutes to fix the machine, and inside I felt like a kid on Christmas morning. Even now, I never take anything for granted. Even the simplest of things.

Afterward, we went inside to wash our hands and do our shopping. Neil found the DVD he wanted to rent, and it was only fifty cents. Without my prior knowledge, everything I had already planned to get was on sale – the organic butter lettuce, the Virgil’s Black Cherry Cream Soda, the Haagen Dazs dark-chocolate-on-chocolate ice cream bars. I could see Neil across the store picking out some candy for himself, and even at fifteen, he just looked so sweet. I reveled in feeling my mother-love. It was like this little trip to the grocery store was my gift for having such a tough week. But the best gift of all was yet to come.

We got in line at the checkout counter and put our things on the belt. As we stood waiting, I heard a girl’s voice say, “Hey, Neil, how are you?” This was not the first time someone had greeted him in the grocery store, and I quickly assessed her. Some kids make a show of saying hello to Neil in a manner that indicates that they see him as a novelty. Some kids are nice enough, sincere even, but they don’t really understand him. And once in a great while, a kid will say hello to Neil, and it’s real. I could tell instantly that this girl was real. She was genuine. Just lovely. Neil said hi, accepted a hug from her (with his trademark stiffness, which didn’t faze her in the least), and then told her, “This is my mom.” She looked me in the eye, and in my ridiculous current emotional state, it was all I could do not to cry. I wanted to hug her. Because I knew. I just knew that she was the type of kid that we parents of ASD kids hope for. The angels that look out for our kids when we’re not there. I felt it with my entire being—she was definitely one of them. And so, suppressing my urge to throw my arms around her, I told her my name and shook her hand and smiled. And I hoped that my smile conveyed my deepest appreciation. Thank you, sweet girl. Thank you for caring about my son. For not only respecting him, but for including him. Thank you for being the wonderful person I know you are.

After our brief exchange, Neil told her that he had rented The Time Machine. Not only did she say that it’s a good movie, but when he mentioned that it was based on a book, she knew who had written the book (H.G. Wells) and said that she’d read it and liked it! She totally gets him! Then she said a few more things to Neil as I paid for our items, and she left. Neil and I picked up our bags and walked outside. “She seems really nice,” I said. “Yeah,” Neil said. “She’s in my theater class.”

The tears came then, and I was glad that it was now dark. I hoped that Neil couldn’t see them, because they would be so hard to explain. Hell, I wasn’t even sure why I was crying. Was it happiness? Relief? Why do so many emotions—especially unidentifiable ones—drive me to tears?

In the end, I think I was just overcome with gratitude. Not just because she was so good to my son, but because, at that moment, she was unwittingly there for me, when I needed her most. At the end of a long, hard, emotional week, she was there. She’s not only Neil’s angel, she’s mine, too.

Looking Not-So-Far Ahead

A quick look at my Amazon Wish List conveys what’s been on my mind lately: my son’s future. I mean, it’s obvious when you look at the titles –

Now that Neil is fifteen (and a half), we really need to get going on his transitioning plan. But how? How do you do plan for adulthood when your high schooler has the emotional maturity of a ten-year-old? He talks about wanting to go to college, which is great. But how can I realistically plan for that when he can’t handle the modified workload of his freshman year of high school?

Yes, Neil can progress. He has proven that over the years. He is handling things now that I would have never thought possible, even three years ago. So it is within the realm of possibility that three years from now, he could be going through the admissions process for college. But as much as I believe in my son, that’s a big maybe.

You see, Neil lacks executive function skills. And I don’t just mean that it’s challenging for him. I mean that they’re pretty much nonexistent. This is why he requires one-on-one assistance in his classes and two study period pull-outs every day to do his regular classwork (with constant assistance). Every advancement he’s made in Boy Scouts is because an adult (usually me) has walked him through it, outlined the work for him, and kept him on track. He is unable to do it himself.

And so, I worry if college is a realistic goal for Neil. He is certainly intelligent – he’s just not able to do the work, nor is he motivated to. And college is a lot of work. There are no IEPs in college, no educational assistants hovering over him to keep him focused. There’s no modified curriculum. I know that there are programs to help people on the autism spectrum navigate college as far as housing and living independently. But they don’t write the students’ papers. They don’t do the work for them. That’s what executive function is for. Either you have it or you don’t.

I suppose that it’s something he could be taught, but that’s one of the things I tried to do when I homeschooled him for a year and a half. I taught him how to do math problems step-by-step, how to write essays, organize his thoughts, and outline. And it didn’t take. I don’t think his brain functions that way. Perhaps he wasn’t ready for it at the time, but it wasn’t that long ago, and at this point, time is of the essence.

All I’ve ever wanted for my children was for them to feel loved and to lead happy, fulfilling lives. I know that doesn’t have to involve college, but Neil’s dream of being an astronaut does. And there are times when I wonder if all the years of therapy got him to a really good point, but it’s not good enough. We got him to the point where he can communicate verbally and go to restaurants and grocery stores and interact with people and make a grilled cheese sandwich and ride his bike to school and back independently, but he can’t work independently. And while I am so happy and proud and grateful that he is able to do all those things that were impossible for years, that glaring difficulty remains. Once more with feeling: he can’t work independently. And I don’t know what that means for his future.