Tag Archives: independence

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 Nigel 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, Nigel 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, Nigel lacks executive function. And I don’t just mean that it’s challenging for him. I mean that it’s 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 Nigel. 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 Nigel’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.

Staying Home Alone

“Independent functioning is not simply the ability to do something, but also the ability to decide what to do. It is not only the ability to take care of oneself. It is also the ability to take responsibility for oneself.” — Elaine Heffner (20th century), U.S. psychiatrist and author

Michelle at The Sneathen Family Site, one of the blogs I read regularly, posed an excellent question at the end of a recent post. She asked, “When, if ever, have you let your kids stay home for short periods on their own?” And since one of the most common searches used to find Teen Autism is “should an autistic teen be left home alone,” I thought I would do a search myself. There are plenty of parenting sites out there that offer guidelines for non-autistic kids and staying home alone. Given the fact that I couldn’t find much when I added autism into the mix, I figured that this subject warranted a post.

I started letting Nigel stay home alone for short periods starting at age twelve. We began with 20-minute increments and worked our way up to a few hours. I felt comfortable with that only after he had shown proficiency in the following areas:

1) Being able to call out if necessary and taking periodic check-in calls from Mom

2) Not opening the door for anyone, unless it’s the neighbor yelling “Fire!” Fortunately, that second part has not happened.

3) Knowing how to get out of the house quickly and where to go if something blows up

4) Staying in the house the entire time unless something blows up

5) Not doing anything that could cause anything to blow up

I reluctantly admit that we have had problems with items 4 and 5 on that list, resulting in the suspension of staying-home-alone privileges for periods of time. Apparently, the euphoria of being home alone sometimes causes my son to climb the 40-foot high tree in the backyard or set the couch cover on fire using a magnifying glass. Thus, he is also working on impulse control. For an autistic teen yearning to be independent, this is quite motivating, because he detests having his home-alone privileges revoked.

So, basically, what it boils down to is a combination of verbal ability and safety awareness. If Nigel did not have the ability to use the phone in an emergency, I would not consider leaving him home alone. His safety awareness has been developing for the past few years, and even though he “forgets” the home-alone rules once in a while, he is constantly improving. Someday, I may even return his magnifying glass to him.

Wing Check

I remember the public library near my home where I grew up – in a suburb twenty miles east of Los Angeles. I felt comfortable there, surrounded by books and like-minded people. I loved to go there, whether it was to find a cozy novel or to do research for a report or essay (definitely pre-Internet). When I was fourteen, my parents would drop me off with instructions to be standing out front for pick-up in an hour, which always went by too fast.

I still love libraries, especially small ones like the one I grew up with and the one in the small southern Oregon town in which I currently reside. Once every two weeks, Nigel and I walk the third-of-a-mile distance from our home to the library. I read magazines while he peruses the juvenile shelves for his favorite book series, Eyewitness, covering topics as varied as the Civil War, Ancient Greece, pirates, knights, and everything in between. After a half an hour, he has made his selections, and we check them out via the self-checkout (which he loves), and then we walk home. Often, since it is a small library, we need to request certain books through the inter-library loan service, and that is what Nigel did last week for the book The Neverending Story. And they called today to let us know that it had arrived.

I was busy working, trying to meet a deadline, and of course Nigel had to get his book right then. I thought for a second. He is fourteen, he can communicate, and he wants to be independent. He can do this, I thought. I took a deep breath and the words came out as I exhaled: “Would you like to walk to the library to get it yourself?”

“I can go,” he said, some excitement in his voice. “I know how to get there. I can get the book myself.” He quickly went to put on his shoes and jacket, as if worried that I would change my mind. “I’ll watch for cars,” he added.

I opened the front door for him as he left. “Be careful,” I said. “And come right back after you get the book.” I checked the clock and allotted enough time for him to walk there and back, added a few extra minutes for distraction, and noted what time I should start to worry if he wasn’t back yet. Ha! Start to worry. Like I wasn’t going to worry the entire time he was gone.

A minute after he left, some idiot on a scooter sped down our 25-mile-per-hour residential street, and I worried about Nigel reacting to the sound, or worse, not getting out of the way fast enough. I worried about him crossing the busier street that the library is on, I worried about someone luring him into their house. I worried about him darting away from bees and other flying insects, I worried about him leaving his library card at the library and having to go back for it (which has happened before, even when I was with him).

But these are the baby steps we must take. I would love for my son to at least have a semi-independent life, and I must start fostering that. I must let go a little. I have to trust. I’ve laid the groundwork, and now it’s time for him to test his wings a little. And it’s time for me to let him. I just hope that the idiot on the scooter is long gone when Nigel makes his way back to the nest.

It was silly of me to think that I could focus on my work while Nigel was gone. He has gone out on his own before, for bike rides around the neighborhood or to go to a friend’s house, and I worried those times, too. I don’t suppose it will get any easier, especially as he gets older and wants to do even more things independently. And I know that this is something all parents go through to a degree, especially since I have a younger, non-autistic child and go through it with him. But it is different – they are different.  They have coping tools and social skills to see them through many situations that Nigel does not, making him far more vulnerable. But I can’t deprive him of the satisfaction of walking to the library himself to check out a book if he is able to. And I believe that he is.

Right on time, actually early, he walks through the door, book in hand and library card in pocket. “Everything go okay?” I ask. “Fine,” he says, and shows me the book. It’s probably the same exchange that took place with my parents when they picked me up at the library all those years ago. And it feels just as good, all these years later.

Adventures in Cooking

At some point in the last couple of years, Nigel, like another skillful boy his age, learned to make toast. He has this routine of pre-slicing the butter so that it has softened by the time the toast pops up, placing the thin pats on the toast, waiting 30 seconds and then spreading them.  Then he actually wraps up the bread and butter and puts them away. It’s one of the things he does perfectly. And until last week, it was the only thing he could cook. Not anymore!

Last week I came home from work (I usually work from home so that I can homeschool him, but I go into the office on Fridays), and I could tell by the smell that something had been cooked. And not just toast. I put my stuff down and called out, “Nigel?” “Hi, Mom,” he answered from the living room. “How was your day?” I calmly asked. “Fine.” Did I really think I would get more than that? “Did you do your schoolwork?” “Yes,” he said, keeping his eyes on the TV.

“What did you cook?” I asked.

“I made grilled cheese.”

I surveyed the kitchen and noticed that my 12-inch risotto pan was out on the stove with a spatula inside of it (and the remnants of browned butter). The cheese, bread, and butter had all been put away. “Wow,” I said supportively. “How did it turn out?”

“Fine.”

“How did you know how to cook it?”

“From watching you.”

Thus my son proves that, once in a while, he does pay attention. And, more importantly, that he can cook on a gas stove without blowing up the house! Without burning anything! I am so proud. Emeril, watch out.