Tag Archives: Future

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.

Thinking Ahead

My younger son Aidan, who is twelve, has recently discovered Bob Marley. He found one of my CDs from my college days (when I first discovered Bob) and it was love at first listen. Aidan plays it day and night. He tells me that he likes the music, but also the lyrics. And I’ve noticed that, too. Aidan seems even calmer and more introspective than usual. What I hadn’t noticed was that Nigel had also started listening.

Last weekend the boys were very excited because The Day the Earth Stood Still was opening. They had recently seen the original and looked forward to comparing the new one to it. I told them that we’d wait until the following weekend so it wouldn’t be so crowded. Then I made the fatal mistake of writing on the calendar the day and time I hoped that I could take them to see it.  If it’s on the calendar, it’s in stone as far as Nigel is concerned. It’s going to happen. And usually, it does. But that morning the schools had scheduled an emergency 2-hour late start due to bad road conditions, and that threw everything off for the day. Because Aidan started school two hours later, I couldn’t go into work until two hours later. Consequently, I didn’t finish my work until two hours later than I normally do. By the time I got home, I could not do all I needed to do in time to go to the movies that evening, and we would go the following day, I announced.

Nigel got upset. “But it’s on the calendar!” he yelled and began breathing heavily through clenched teeth, eyes wild as he quickly went into meltdown mode. This was not good. I had plans with a friend later that evening (something I had planned to do after the movie), and if Nigel didn’t calm down, I wouldn’t be able to leave him. I tried reminding him about “Old Plan, New Plan.”  “That doesn’t work!” he yelled. He then took a wooden ruler and mutilated a piece of pizza with it. I could tell he was escalating. He went to the living room and broke one of my hand-painted pysanky eggs from relatives in Slovakia. I knew that my response was crucial – he wanted a reaction out of me, so I did not react. I calmly said, “Nigel, pick up those broken pieces and put them in the trash.” And I think he was a little surprised that I didn’t yell at him about the egg, so he actually cleaned it up. He resumed his verbal tirade, but at least he stopped being destructive. Then I had an idea. An alternative for him. It was a “New Plan,” but I didn’t want to call it that.

It was risky, because I didn’t want him to think that I was rewarding him for his behavior. But what I hoped to accomplish was to help motivate him to regulate his behavior himself. Some would call it a bribe. But God knows that when you have to change plans on an autistic teen, you better have an acceptable back-up plan.

I sat him down and tried to look into his wild eyes. “Nigel, here are your choices. You can be mad about not going to see the movie tonight, but that’s not going to make it happen. Or, you can calm down and come with me to the store to pick out a video rental and get some ice cream, and we’ll see The Day the Earth Stood Still tomorrow.” Then I got up and went to my room to get my boots and coat.

Aidan followed me into my room. He looked at me. “Why does he act that way?” he asked with concern and sadness in his voice. “Honey, it’s because the autism makes it hard for him to regulate his emotions and his behavior.”

“Then how is he going to take care of himself when he’s an adult?” Aidan asked in a sincere voice.

A chill ran through my body. I looked at him. “We don’t know if he will. But he’s learning; he’s trying. I think he’ll figure it out. And he can live with me as long as he needs to. So can you.”

I put my arm around him and we walked out into the hallway. Nigel was standing by the front door, with his shoes and coat on. I looked at his face, and the wildness was gone, replaced by a look that I couldn’t determine. Remorse? Gratitude? Maybe both. “I’m ready,” he said. “Okay, I’ll get my purse and keys,” I said. As I walked off, I heard Aidan quietly say to him, “I’m glad you were able to calm down.” And my heart filled with far too many emotions to identify.

A moment later, as I started the car, Nigel asked from the back seat, “Can we listen to ‘Don’t Worry About a Thing’?”

“It’s called ‘Three Little Birds,'” Aidan said.

“Sure,” I said, inserting the CD. And then we all sang, even Nigel:

Don’t worry . . . about a thing . . . ‘cause every little thing . . . gonna be all right . . .

A Little Hope

Yesterday I attended the first family-centered support group meeting for ASD families in southern Oregon. I’ve previously attended other support groups for parents, and they were always welcoming, but I felt like something was missing. I would leave without feeling better than when I had arrived. It wasn’t the type of support group I was looking for.

This one yesterday was different. It was so affirming to have the kids there. The parents, the ASD kids, and the siblings all there, all interacting – it just felt right. I met other parents also at the teen stage as well as others just starting out. The level of understanding was inherent, as was the bond. I saw tiredness on some of their faces, and stress. But I also saw hope.

And the hope was there because the older kids were there. I saw some young parents watching Nigel, and that gave me a sense of pride. Because I know how far he’s come. I still have many concerns about the future, of course. But if Nigel, just as he is, can give some young parents hope for their child’s development, that’s something. That’s really something.

I did the same thing when I went to the autism and puberty seminar that I attended in October. One of the presenters at the seminar was a higher-functioning autistic adult. All the parents were rapt as we listened to her, watched her, absorbed her. She was hope to us, those of us with teens. She patiently answered questions, related stories of her childhood and teenage years, what she had been like. We all wanted to know when she had started talking so that we could compare that to our own children’s past development, and look ahead to how far she progressed, thinking that the potential was there for our kids. Of course, there are no guarantees, and we know that. But still. We hope.

If you ever have the opportunity to attend a seminar where an autistic adult will be presenting, I encourage you to do so. You will come away with a sense of understanding that you couldn’t possibly get from reading a book. You can’t look at that person and think, That’s what my kid could be like. But looking at them and just experiencing their presence will give you hope. And we could all use a little more of that.

Right on Schedule

The future will arrive when it’s ready. Whether it seems so or not, your life is right on schedule.                                       –clipped from an old horoscope, author unknown

I have spent most of today thinking about the future, specifically, thinking about the subjects of yesterday’s post. I sat at my desk for an hour last night writing it, carefully wording what I meant to convey, not sure if I was doing it right. What I neglected to say was this: Even if Nigel doesn’t progress any further, even if he hadn’t progressed to the point where he is now, I would be fine with that. I hope for his progress, but not because I want him to change. I am so happy with him the way that he is, the way that he’s always been. I hope for his continued progress because it would open more doors for him. It would enable him to experience more of life, and that is what he wants, and I want that for him. We all dream for our children. Autism doesn’t put an end to that.

And so this morning, having been up late thinking about what I had written, obsessing about the future, I came and sat down at my desk, my big L-shaped desk with all my projects spread out all over it, and my framed family photos of my loved ones smiling at me, and my soothing candles and bamboo, and my eyes fell on that little quote I had taped to the bottom of my monitor. The future will arrive when it’s ready. I needed that reminder today more than I usually do.

Whether it seems so or not, your life is right on schedule. And so is Nigel’s.

The High Functioning Threshold

I recently came across this survey taken by one of my favorite sites for autism information, Natural Learning Concepts.

Over 5,000 people have been asked this question.  The results of the poll are:

 

WHEN MY CHILD IS AN ADULT, HE/SHE WILL:

1. Live independently 8 Percent
2. Live independently but require minimal support 42 Percent
3. Live in a group home 14 Percent
4. My child will probably never leave home 36 Percent

 

These results intrigue me, and make me wonder two things. First of all, how old are the children of the parents surveyed? I know that my answer would vary depending on the age Nigel had been at the time I was asked. Between the ages of three and seven, I would have chosen #4, My child will probably never leave home. Between the ages of eight and thirteen, I would have chosen #3, Live in a group home. But now, as he nears fourteen, I might possibly choose #2, Live independently but require minimal support. Or, it might be #4 until his late twenties-mid thirties, and then #2.  And then, as I look back at how far he’s come and dare to dream about how far he might be able to go, I wonder if the possibility exists that in a few years I could actually answer #1, Live independently. As the years have gone by, his functioning has gone from fairly low to moderate to fairly high. What if he continues to improve? What is his true potential?

And this brings me to my second question: At what point do we say that someone is high functioning? The definition is rather subjective. I have acquaintances who’ve said to me, “How wonderful that Nigel’s so high functioning!” But I think, if he were so high functioning, wouldn’t he be able to be mainstreamed? Wouldn’t he be able to make it through a typical school day? At this point, he talks HFA (high functioning autistic). His sensory issues, so severe in the past, are now at a manageable level. So how do we quantify our child’s level of functioning? Where is the high functioning threshold anyway? At what point do we know that our children have crossed it? And what does that mean for them and their future? Trying to make their way in this world that could easily take advantage of them? What does it mean for us, their parents?

Of course, if Nigel were still non-verbal or still had severe sensory issues, I would not be asking these questions. I would choose answer #3 or #4, as I would have when he was younger. I would still think about his future, of course, and mine. I would obsess about finding a good facility for him. I know that it would not be easier, because I had been in those shoes for several years. But it would be different. My concerns about my son’s future are different now than they were before he began reaching for the high functioning threshold, but no less worrisome, no less consuming.

And so, regardless of our children’s age, regardless of their functioning level, we all face the question posed by Natural Learning Concepts regarding our children’s future. We all wonder and worry. Some parents’ worries evolve and change, and some are unique to their own circumstances. But we all face the prospect of how autism will affect our children’s futures. We all have our own suitcases to carry. And whether we cross that threshold or whether we’re at the opposite end of the spectrum or somewhere in between, we still face this challenge. And that is no small feat.

3 Greatest Concerns

A friend of mine recently suggested that I identify and write about the three biggest areas of concern for parents of autistic children. I quickly determined my three, and they are probably universal.

1) Safety

Our children’s safety is a huge life-long concern. We worry because they can have extreme responses to sensory issues, like darting into the street because a bug flew in their face or screaming and writhing on the floor in a public restroom because someone started the air hand-dryer. Our children are also vulnerable to being coerced into doing things that are dangerous or illegal because they are trusting and many of them want to have friends. We worry that they might be abused at some point in their lives, and worse, not be able to tell us. Some of our children have seizures, which can be deadly. We worry if our child leaves the house when unsupervised; some are runners who like to “escape.” We worry about our children injuring themselves or others when they lash out due to frustration or fear. We worry about how people out in the community will respond to them. Safety is definitely a primary concern, and parents must be vigilant.

2) Education

We parents are equally concerned about our autistic children’s ongoing education. We want to make sure that they are in cognitive-appropriate programs and that they have access to the various types of therapy that they need so that they can progress to their optimal level of development and functioning. If our children are mainstreamed, we constantly have to check in to make sure that their needs are being met, that they are not being bullied, and that they aren’t just being sent to the library to watch videos. Our children’s academic and social development greatly affects their potential, and we always want them to be happy, learning, and valued. This involves a great deal of parent advocacy.

3) Future

It may only be an occasional thought for parents of younger autistic children (mostly because we were too busy trying to deal with the present), but once our children hit adolescence, it becomes a major concern. What does the future hold for my child? How will he be in adulthood? What happens when I’m not around to care for him? These are all questions that entered my mind upon Nigel’s initial diagnosis, and infrequently in the ensuing years. About a year or so ago I started to really wonder about his future, to think about it on a regular basis. I have concerns about how independent he will be, how he will navigate the community without my intervention, how he will interact with people. Most importantly, I want him to feel fulfilled with his life, to have a job that he enjoys and people around him who appreciate him. I want him to be happy. Of course, that is what all parents want for their children. But with autism in the picture, parents so often have to orchestrate the outcome, since in many cases we are heavily involved for the rest of our lives. Our concerns about our child’s future become our champion cause.

The Autism Club

When I was in high school I had a good friend I’ll call Eddy. Eddy and I were in several of the same classes since freshman year, and by junior year, we had become pretty close. We never dated, but we talked a lot, and one day during class he ran out, visibly upset, and the teacher suggested I go check on him. I found him sitting on the steps of the side entrance of the building, and I sat next to him and gave him a hug. He told me that he was coming to terms with the fact that he was gay. He didn’t know how to tell anyone; he felt confused and a little scared. I assured him I would be there for him.

Months later, Eddy felt better and more sure of himself. His family had responded positively to the news and his friends supported him. He said that he couldn’t believe that it was happening to him. He had read and heard about people being gay, but until he acknowledged that he was, he never realized what it would be like, how it would affect him. He said that he felt like now he belonged to The Gay Club. And that it would determine the rest of his life.

I certainly didn’t feel it at first, but over the years I have come to realize that with my son’s diagnosis I was granted lifetime membership in The Autism Club. I had read and heard about autism, but I had no idea what it was like until, through him, it became present in my life. I never realized how that would affect our whole family.

I’m sure it’s the same for any parent of a child with a disability. You start going to all the IEP meetings, the team meetings with therapists, the therapy appointments, dealing with trying to take your child out in public, finding a good fit with a program or school and changing frequently when it doesn’t fit. You come to terms with how the disability affects all the family members, now and in the future. You realize that your lives are going to be different than those of your neighbors, and even your friends. You wonder how it will affect your other child, having a special needs sibling.

So you go to the meetings, you do what you need to do, you give attention and show empathy to your other child, and somehow, as the years go by you realize that you are functioning, you are doing this. Life goes on. It’s different, it’s not how you thought it would be, not what you would have wished for yourself and your children, but it’s okay.

Some might think I’m trivializing the experience by calling it The Autism Club. It is in no way trivial, and I know that only too well. It affects me deeply. I realize that I’m not the one who lives with it, but I am connected for life to the one who does. There are millions of parents of autistic kids, all going through what I go through. And that makes me feel like we’re all part of some special club or association. We didn’t ask to join. But we’re making the best of it. And it’s good to know that we’re not alone.