Category Archives: Misc. Autism topics

When I Told Him

I have put off writing this post, but it is time. Holly at Fearless Females, one of the blogs I read on a daily basis, wrote about this subject, and it encouraged me to write a post about when (and how) I told Nigel about his autism. On that day, Nigel had experienced something that I’ve referred to as a “lucid moment” or a “moment of clarity” (which Holly also recently wrote about). It was a rare moment when he might ask me a question, or I’d ask him a question and he’d answer me, not in the rote tone of autism, but in his own sweet voice, with complete comprehension and perfect enunciation. The words he used were his own, not echolalic, not a phrase he had memorized from a video that would fit within the context of the situation. And during these fleeting moments of clarity, I could see in his eyes that it was really him, not the autism, the usual vacant quality, that was communicating. At least, that’s what it felt like to me.

On the day in question, I had received a call at work (up until I began homeschooling him a year ago, not a day went by that I didn’t fear receiving the dreaded calls that my son’s behavior was too disruptive, and I needed to leave work to come and pick him up). I’m not sure what he did that day. It was a blur of many days, many issues. Once a boy who had somehow antagonized him came up to him, and Nigel grabbed him by the shoulders and swung him around and threw him on the ground. Another time he threw a pinecone in a friendly girl’s face, because someone else had riled him up. He had chased kids with sticks in his hand. He had knocked desks over and screamed in class. He had refused to do class work, complaining, “I’m too hard,” back when he was still learning pronouns.

So I picked him up from school, and his full-time education assistant explained to me what had happened that day. Nigel, age eight, stood with us for a moment, then walked off a little ways until we had finished talking. He hates being talked about, always has, and he’s never been oblivious to it. And he knew that other kids’ parents didn’t talk to any teachers about what kind of day they had, every day. But that day, he was able to verbalize it.

I will never, ever forget the feeling in my body as we walked to the car, side by side, and he looked up at me and said, so lucidly, “What’s wrong with me, Mom?” Those words gripped me, set off a knot in my stomach, chilled me, stunned me (since most of his speech at that point was still echolalic or with incorrect syntax). I knew the day would come, because Nigel had always been social, and he was developing verbal skills. I knew one day he would wonder, and he would ask. I was not prepared for it that day, in the middle of second grade. So soon, so harsh. I stopped for a second and put my arm around him. “We’ll talk about it when we get home, honey,” was what I said.

I berated myself later, wondering, Why, when he asked me what was wrong with him, didn’t I say, ‘There’s nothing wrong with you, honey’ ?  To this day, I wish I had said that instead. But his words had caught me off guard, and I wasn’t prepared.

How do you explain autism to your eight-year-old autistic son? I don’t even remember how I began. I’m sure I tried to keep it as simple as possible. I think I started off by saying, “Some people have a disability in their eyes and they can’t see. And some people have a disability in their legs and can’t walk. A disability is something that makes it hard for people to do things. There is a brain disability called autism. Autism makes it hard to learn to talk, and it makes your ears sensitive so they hurt when you hear air dryers in public bathrooms or leaf blowers outside or the vacuum cleaner.” I wasn’t sure if he comprehended what I said, or if he was even listening. He didn’t appear to be. I continued by telling him that his teachers and family will help him with understanding autism, and there are some good things about his autism too, like learning to read early and knowing how to read maps. I told him it’s okay to have autism. He seemed fidgety at this point, and so I told him he could go watch a video. I hugged him, and after he left, I cried.

But not for long. I’ve always acknowledged my emotions concerning having an autistic child, but I’ve also come to realize that vigilance and advocacy are two things that I need to focus on, and they take up a lot of time and energy. So I let myself cry when I need to, but my mind soon jumps to begin composing an email to the Special Education Consultant (advocacy) about whatever issue caused me to cry, and then a split second later I’m dashing out of the room (vigilance) to find out why Nigel’s yelling or what just crashed.

So that day that I told my young son, with a huge lump in my throat, about autism, I did cry for a minute. Then I got up, went to my computer, and wrote “Nigel’s Autism Book.” I wrote it in the first person, starting with, “My name is Nigel. I like to run, read, laugh and play like other kids. But there is something different about me. I have autism.” The rest of the book talked about how autism affects him. Things like, “Sometimes I don’t know what to say and I say something from a video. I like to watch videos. But other people do not know words from my videos. First I will tell them what video I am talking about when I say something from a video.” I ended with “Other people have autism too – other kids and adults. Someday I can meet them.”

Unfortunately I didn’t finish the book until after he had gone to bed, so we didn’t have the opportunity to read it. The next day was traumatic for him. He was beside himself, physically and verbally acting out with anxiety and mentioning autism to all the teachers (I guess he was listening when I had talked to him). And, of course, I got a call at work that I had to come and pick him up. We came home and I read him the book I had written for him, and we read it with Aidan, who was six at the time. Nigel spent the rest of the day carrying his book around and later stated that he wanted to bring it to school the next day. He had such a relieved look on his face that I reprimanded myself for not preparing the book before telling him that he had autism. Of course! He needed something visual in order to gain some understanding of this bomb I had dropped in his lap. Now he had an explanation. Something he could show to other people because he couldn’t explain it in his own words. He took it to school and showed his teachers and the kids in his class. And some of those kids still care, still look out for him, six years later.

I consider “Nigel’s Autism Book” to be the most important thing I’ve ever written. If I publish nothing as long as I live, I have helped my son with my writing, and that is worth so much. Nigel still keeps the book on his bookshelf, and every now and then I see him reading it, as if to remind himself how far he’s come.

Renewing My Vows

Sometimes I need a wake-up call.

Last week Nigel attended a Scout meeting, which he does about twice a month. There are four Scout meetings scheduled per month, but he can only handle two, so that’s what we do. He has been around most of these boys for a few years now, and they do the best they can to accept Nigel’s idiosyncrasies, or at least tolerate them. Most of the time, he gets through a meeting with minimal disturbances, and so I develop a sort of complacency.

Nigel had a bit of a hard time at the meeting last week, and I couldn’t figure out why. I sat on the sidelines, with a few other parents who attended, and kept an eye on him, hoping he wouldn’t get out of hand. He kept talking out of turn, interrupting leaders who were speaking, getting in kids’ faces to spout movie echolalia, making noises, and generally not participating. Generally not functioning very well. I was convinced that he had forgotten to take his medication that morning. That has to be it, I thought. Usually, if we forget his medication in the morning, by evening he is disruptive and exhibits the behaviors I described. I kept looking at the clock, hoping he would not become unmanageable, and finally the meeting ended and we went home without any major catastrophes.

When we got home I immediately checked his pill container for the day. It was empty. He had taken the medication in the morning, so it wasn’t that. What then? What had caused him to become so disruptive in a familiar environment with familiar people? And then the alarm went off in my head. My wake-up call.

This is what autism does. This is what it has always done, since he was a toddler. There are some things you can predict, some behaviors you can prevent, but some you can’t. And there will be some things, plenty of things, you can’t understand. I know this. I’ve lived this. This is autism, and it’s the reason why he acts the way he does. And medication helps, dietary changes help, and therapy helps.  Advocacy helps. Awareness helps. But it’s still there. It’s still autism.

So I dig my heels in a little deeper. Eleven years post diagnosis, I choke up on the bat, I go deep, I open my eyes a little wider. I renew my vows. We’re in this for the long haul. I know I won’t always feel strong, but I do now, and it feels good.

My Radar

After many years of living with my son’s autism, I feel like I know autism when I see it. It’s like I’ve got this radar, and I’m sure other long-time autism parents sense that as well. There’s a difference between a “terrible twos” tantrum and a sensory-overload meltdown. There’s the unmistakable taking an adult’s hand over to the refrigerator to open the door to get something rather than asking or pointing. The lining up of toys, the not responding to questions or comments. And yes, these are rather stereotypical signs. But it’s the child’s presence, and face, that I recognize more than anything.

A while ago I attended a child’s birthday party with a friend. It was for his co-worker’s three-year-old son, with many friends and family members present. Within minutes of observing this little boy, I knew that he had autism, not just by his mannerisms and the signs, but by his face. It was so familiar, and my blood turned to ice because I knew that his parents didn’t know. A few moments later, I turned to look at my friend, someone who had spent much time around my son over the years, and my friend’s eyes were wide. He knew, too. “I think he has autism,” my friend said quietly to me.

I felt strange. I was not close to these people. How could I go up to them and say, “I think your son has autism”? Or even the less-shocking, “Have you looked into speech therapy?” I was torn because I felt like I should do something to steer them toward early intervention, and to somehow convey to them that I understood. But it was not my place. I was an outsider.

I continued to observe the little boy and his family. There was so much love and acceptance, and so much accommodation of the autism that they didn’t know about. Was I obligated, as a seasoned autism parent, to say something? Part of me thought so. What if they knew something was different about their son? What if they were searching for answers? But a larger part of me just realized that, as a stranger, it wasn’t my place. It was a birthday party. I told my friend to give them my number if, in the future, his co-worker approached him to say that his son was diagnosed with autism.

The radar will always be with me, and I’m sure that other situations will occur throughout my life in which I find myself faced with the “should-I-say-something” dilemma. It comes with the territory. But so does a lot of support, knowledge, and understanding that I can offer down the line, when they’re ready. That’s my place in the picture.

Savant-Garde

A few weeks ago we enjoyed a visit with some long-time friends who live out of state. Our families have been friends for so long that we joke that our sons were “friends before they were born.” At one point, their NT son Jonathan, who is twelve, was talking with Nigel about how he (Nigel) learned to read when he was three and a half.

Jonathan: That must be your savant skill.

Nigel: My what?

A sort of chill permeated the air, even though it was about 105 degrees around the patio where we sat. Jonathan didn’t respond, his parents didn’t respond; I think everyone was waiting for me to jump in. It had never before occurred to me to talk to Nigel about autistic savants. I had never thought that his hyperlexia qualified as a savant skill. Sure, it was astounding at the time, but the sources I checked do not include it as a sign of Savant Syndrome.

Me: A few autistic people have skills like computing difficult math problems in their heads, playing music very well, painting or drawing something in great detail, and memorizing lots of information. They’re called autistic savants. But not every autistic person is a savant. In fact, most are not.

Nigel: Good. Because I hate math.

So glad that’s settled.

Army of Advocates

I’ve been thinking lately about this army that I’ve been part of for almost eleven years. The first few years I was fighting the autism itself, grasping at therapies and treatments when there wasn’t much out there, as far as resources and current information. And, in my state of shock, I was referred to an excellent agency called Child Development Services. They had current information. They helped my son, those speech therapists, occupational therapists, behavior consultants, and autism specialists.  In my mind we were fighting the autism. I wanted things to get back to normal.

Then I realized I had to find a new normal. I realized that my son wasn’t going to “grow out of it.” He would progress, he would slowly, painstakingly learn to talk, he would gradually learn to filter the sensory input that often caused him to scream and writhe in public. And my fight changed a bit. I tried to mainstream my son, and I came to feel like I was fighting the school district. He had an educational assistant (two, sometimes); we had weekly meetings during which his teacher actually rolled her eyes when discussing my son; I came to the school and found him running around the halls aimlessly. This was not a new normal that I could live with, so we switched schools. Again.

Now I’ve accepted that the fight will continue indefinitely, but it continues to change. Now that I’m homeschooling, I don’t feel like I’m fighting the school district, although I should have. In the space of his last six weeks there, they suspended my autistic son twice, for behavior that he could not control. Part of me wishes I had taken them to court, but I didn’t have the time or the energy, really. And my younger son had to still be enrolled in that district, to stay with his friends. I had to consider his needs as well.

We are all still fighting. We all have our own crosses to bear. I once read or heard an analogy that if all the people in the world were lined up next to each other, and we could put all our problems in a suitcase and set it in front of us and then trade suitcases with someone else, in the end we would pick up our own suitcase and carry on with that. Some of us are fighting the autism, some of us are fighting the school district, and some of us are fighting the ignorant public, trying to find a place in it for our kids. A place of acceptance and a place of dignity.

So here’s to all of us who pick up our own damn suitcase every day and continue on. We may not have enlisted in this army, but we believe in the cause, and we’ll keep fighting.

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.

A Secret

For years I had a secret that I was reluctant to tell, and rarely did. After Neil’s diagnosis, I thought that people wouldn’t believe it. But people here might, and so I divulge: I have always been fascinated by autism. I first read about it when I was eight years old and I used to read the twenty-five volume hardcover Encyclopaedia Britannica volume by volume. I would sit in the brown upholstered rocking chair in our living room, open up the large, heavy book in my lap, turn the crackly new pages, and smell the fresh paper-and-ink scent of a previously unread book. I’m sure I didn’t read all of them cover to cover, but I read enough to learn all sorts of things. Autism was one of them.

I became intrigued right away. I studied it throughout childhood and adolescence (although the only printed information I found was archaic), and in college I received my minor in psychology, stemming from my long-time interest in autism. Even at a young age, I wondered what caused it. In adolescence I wrote a story about a teenage girl who had autism, and she could talk, but her speech was echolalic. I didn’t know about echolalia at the time; I hadn’t even heard of the word. I just somehow knew that autistic people communicated that way. It was as if I had this innate understanding of autism. When Neil was diagnosed at age three, however, at first the idea seemed impossible to me because he was so affectionate. The old stereotypes (and the archaic descriptions I read) really got in the way of recognizing it.

Many parents whose child is diagnosed with autism will feel a need to grieve. The future of their family will be vastly different from that of most, if not all, people they know. They are fearful, not knowing what to expect, and their response is only natural. Oddly, emotional as I am, I did not cry when Neil was diagnosed. I have on many occasions since; for example, out of frustration and sadness for not being able to do things with my child that other people take for granted (going to the grocery store or a restaurant), and, in recent years, I’ve cried because it pains me to see Neil try so hard to fit in with his peers only to be laughed at and bullied. But I didn’t cry when he was first diagnosed, and I’ve often wondered if, in addition to it being a shock, maybe I subconsciously knew that I was destined to have an autistic child. Maybe all those years I spent reading about and studying autism, due to a childhood interest, was my subconscious mind prepping me, saying, “Start wrapping your mind around this.”

Is that farfetched? I’m fascinated by autism for most of my life and wind up having an autistic child? I don’t know. I remember a chill came over me when Neil’s diagnosis was uttered. I was scared, it didn’t seem logical, based on what I had read, but deep down I knew it was true. Some words etched themselves on my soul: This is my path. Somehow I have always known it.

Genes

Even though I miss my boys during the summer, I enjoy being by myself so much. I savor the quiet. I enjoy being free to spend my time at what I choose, but especially, I enjoy not having to talk. And that’s kind of the stereotypical hallmark of autism, isn’t it? Not talking? Of course, there’s a world of difference between not wanting to and not being able to. But stay with me . . .

My mother said that when I was a baby I would get on my hands and knees and bang my head into the headboard of my crib in a rhythmic, repetitive way. And I rocked. As a child I rocked myself on couches if there were no rocking chairs available. To this day I love to rock, I love the soothing element of the motion. Isn’t that a form of stimming? Rocking and banging my head repetitively?

Apparently I was also resistant to touch, to contact. I am told that I didn’t like to be held. Where have we heard this before?

This is why I believe that some people are genetically predisposed to autism. Even though I was not autistic (I talked very early and exhibited a high level of social awareness), I can see some faint characteristics in my infant and childhood self. The writing was on the wall. All it took was the combined genes of someone else who had been a bit like me, a dose of terbutaline in utero, and a whopping bombardment of thimerosol within the first few months of life and  . . . voila! Autism.

Autism T-Shirts

Yesterday I noticed at Café Press that there are a lot (thousands!) of great autism awareness T-shirts available. Some of my favorites can be seen by going to this link and then just clicking through the pages. “What? Is my autism showing?” is good, “Hang on, I know I have a social story for this” made me laugh, “Yes, my son has autism. No, he’s not like Rainman” is another good one, “When children cannot learn, it’s time to change the way we teach” hit home with me, as did “Parenting advice not appreciated unless you also have an autistic child.” Amen to that! I think I’ll buy that one! Wish I had it years ago!

There are so many good ones. One I really like is “got autism?” styled like the “got milk?” ads. I don’t know how Nigel would feel about wearing it, though. His favorite T-shirt has a silhouette of Bigfoot on it and says “I believe” across the bottom. He proudly wears it everywhere.

And then I saw a T-shirt that read “Autistic and proud” and I got chills and a lump in my throat. Nigel would probably feel self-conscious about wearing it. But I think the reason why it resonated with me is because I’m so proud of him. Yes, there are plenty of T-shirts that read “I’m proud of my autistic son/daughter/brother/sister/grandchild/etc.” on them. And those are great. But ultimately, I want my son to be proud of himself and all that he has accomplished: wanting to communicate, learning to talk, which was so difficult for him, figuring out how to filter his sensory issues (equally difficult), learning about all the social expectations of this NT world and dealing with its ignorance. But even if he hadn’t done all of that, I would still want him to be proud of his unique, amazing self. All auties should be “Autistic and proud.” I salute every one of them.

The Autism Fairy

I found out an amazing coincidence yesterday. I ran into an acquaintance of mine from a couple of years ago, and we started talking about our sons, since we remembered that we both have sons of approximately the same age. It turns out that his son and Nigel were born on the exact same day, same year, same hospital, within two hours and fifty minutes of each other. Bizarre. I thought, aside from the autism, they must be a lot alike.

And that got me thinking. Out of the seven or so babies born in that place at that time, we were visited by the Autism Fairy. The luck of the draw. But I don’t think that in a Why us? sort of way. There are times, like when I was at work and the school would call me about a behavioral problem, and when I was at the movie theater and the manager and Nigel came to me in the middle of the movie, that I think Why me? at that moment, because I am stressed. But my big-picture thought process is more accepting.

I’ve heard it said that God, or the Universe, won’t give you anything more than you can handle. And if I had a dollar for every time I cried, “I can’t handle this!” I could easily buy myself a nice case of wine. But you do what you have to, you get through it, and, ultimately, you handle it. Maybe not optimally. But you do the best you can.

Because I believe that we were chosen to have autism be a part of our life’s journey. We are a special needs family. And the Autism Fairy visited the right room in the hospital that day. I’m sure of that.