Participation

This is a picture of Singularity and a few of his Cub Scouts friends marching in the parade at the beginning of our town’s annual street fair. He is the one with the long ponytail and headphones. The headphones block about 27 decibels. Since acuity of hearing is one of Singularity's superpowers, he needs them as a defense against an onslaught of random sounds coming from all directions. The headphones are like a security blanket for him. He almost always wears them when he is out in public. They have made it possible for him to be out in the world.

The headphones are an outward sign of difference. They attract a lot of questions from other children, and Singularity is now able to explain to them that he is sensitive to loud noises.  I’m proud of him for that. But I do worry that he may someday become self-conscious about wearing them. There are enough things to worry about already, so we’ll just cross that bridge when we get to it.

Anyway, back to the parade. Singularity got off to a great start, but he became less able as the parade went on. Our group was right behind a (very loud) Brazilian samba percussion band, and the street became more and more crowded as we followed the parade route.  As I mentioned, Singularity is very sensitive to loud sounds and unpredictable crowd scenes, and after about fifteen minutes he had become pretty dysregulated. He was aware of this (yay, Singularity!) and he asked me if we could take a break.

Part of me wanted him to fully participate in the activity with his friends and to go along with the program, which is one of the behavioral goals we are working on. On the other hand, it was clear that he really couldn’t participate independently.

I’m kind of glad that there isn’t a picture showing what I decided to do. I piggybacked him through the second half of the parade. I think that this is probably the last year of his life that I will be physically able to do this, and it worries me that I don’t have a better tool in my toolbox to handle situations like this. 

The real reason I wanted to write about piggybacking my sixty-pound nine-year-old is that I did it again last week and I’m still trying to work through my thoughts and feelings about the whole episode. 

Here’s the backstory: We decided that we would like Singularity to attend an afterschool program one day a week with his behavioral interventionist. We had wanted to have her work with him in his classroom at school, but the school has policies against this. So I thought that having the behavioral therapy push into a similar kind of group setting would give us the opportunity for her to work with him on generalizing skills he has mastered at home in a group setting. The program that we picked is also attended by several of Singularity’s best friends and classmates. As with many of my great ideas, Singularity was dead set against it.

It was important to me that he go to the program, so once again I piggybacked him along the route from school to the site of the afterschool program. I could have driven him, but I wanted him to walk with the other kids from his school. The walk is probably about a half mile. At the beginning of the walk, he was screaming and crying and trying to hit the behavioral interventionist and our program supervisor. As we got closer to the afterschool site, his behavior escalated to the point where he actually bit me. Now, I am the favored parent and Singularity’s most beloved person, so biting me was like his last resort. 

After he bit me, he saw that his behavior hadn't achieved its desired result, so he settled down a bit and accepted the reality that we were going to be going to the afterschool program, whether he liked it or not. From a behavioral point of view, this may have been an "extinction burst", where the undesired behavior has a sudden increase in intensity, before it decreases. It's too soon to know if the biting behavior was an extinction burst, as we'll have to try it again and see what happens.

Did I mention that I was taking him to a program where he would be able to spend more time with his best friends? And that there were three adults, including his beloved mom, to make sure that he was going to be all right?

Non-autism parents reading this at this point are probably wondering why I would be so cruel to my child to drag him kicking and screaming to this program that he so clearly did not want to attend. Honestly, as I am pondering the experience, part of me is asking myself the same question. And then I remember that my goals for Singularity's attendance at the afterschool program are for him to learn to manage himself in group activities, to self-regulate better, to go with the program, and to be able to participate in things he is interested in. He is going to need to be able to do these things to get what he wants out of life. I think. OK, I'm pretty sure. After all, Singularity is quite motivated socially. On the other hand, what if he turns out to be able to construct a happy life for himself where these skills don't matter? It is impossible to know. 

Being an autism parent requires a lot of tolerance for not knowing how things are going to turn out. 

This week, Singularity announced that he was not going to the afterschool program on Thursday. He was truly distressed about it. After conferring with the behavioral team, when I picked Singularity up after school I told him that I had decided that this week we would not go to to the afterschool program, but that we would have a home behavioral therapy session instead. He then declared that he would not be participating in the home session either. But he did so willingly in the end. 

And we will be giving the afterschool program another try next week. Next time, I will probably drive him over to the afterschool site in time to meet the walking group when it arrives. And over time we will work our way back to having him walk there himself. Or not. It is possible that this may never work out, but we are going to try to work through it. 

Questions of identity

That is a hair tie carefully placed on the sticky-outy things (cup holders?) on the dish drying rack. When I see things like this, I marvel at the thought process Singularity must go through: Hmmm, there is a hair tie. There is the dish rack. Those things sticking out seem to be just the right distance apart to hold this hair tie. I was right!  At least that is what I imagine he must be thinking. He never says.

Singularity has very long hair, because he has a lot of sensory issues that make haircuts difficult. I think that the problem may be the sound of the scissors so close to his ears, but it is difficult to remember, as it has been over two years since I cut his hair. (He may have had two professional haircuts in his entire life so far.) He is also very sensitive about having his hair washed. He hates it when water gets in his face or ears.

About six months ago, we finally settled on a hairstyle to keep his hair under control. I usually put a French braid in the crown section of his hair to keep the straggling hairs out of his face, and then I  put the rest of the hair into a ponytail. I’m not sure why this innovation was so long in coming. Prior to that, we had taken to making him wear a hat at the dinner table, to keep his hair out of his food.

People make a lot of assumptions about others based on their appearance. Over the summer, Singularity got tired of explaining to people that he was a boy. (This happened most often when he was entering a public men’s room.) So we made a special hair tie using letter beads that says, “I am a boy”.

A friend of mine wanted to know if Singularity is transgendered, because of his long hair. No, he isn’t. (But it would be fine with me if he was.) Singularity seems very clear about his gender and sexual identity.  I am quite certain that he is attracted to women, as he is taking a rather, um, Oedipal interest in my curvy female body.

He has also informed me that he is going to marry a woman and become the father of six children. They are already in our family tree on Ancestry.com. (Genealogy has been a special interest of his.) He has already named his six children, although I am sure that their future mother might have something to say about that. I love it that one of his daughters is named after me. He says that he doesn't know yet whom he will marry, but that he might already know her.

Singularity gets anxious about having someone to take care of him. I told him once that he could live with me as long as he needs to. So now he is planning for his wife and children to live with me when he grows up!

This post is reminding me of a very fine book I recently read, called Far From the Tree by Andrew Solomon, which is a thoughtful exploration of “horizontal” identities, identities that separate you from your family, but which make you part of a community with others who have dwarfism, who are Deaf, who are gay, who have autism, who are transgendered, etc. Solomon doesn't write about this, but being an autism parent is another horizontal identity. Nothing from our prior lives has prepared us for this adventure.

Last fall at our house, we went through a "Flat Stanley" phase. Flat Stanley is a boy who became flattened when a bulletin board fell on him. He has many interesting adventures, all made possible by his flatness. In The Japanese Ninja Surprise, Stanley mails himself to Japan to meet a famous movie ninja, who imparts the wisdom that a flat boy is what Stanley is, but it is not who he is. 

Just as being an autism mom is part of my identity, Singularity is forming a sense of autistic identity. "Autism mom" and "boy with autism" are what we are, not who we are.

Hello world

Over the last several months, I have been taking photographs of everyday objects I find in odd places in our home. I’m not even sure when my son first began making these art installations. He has has probably been doing it for years. But suddenly one day in May, this plastic goose standing on top of the globe caught my eye. It struck me as the physical manifestation of a mind that sees the world in a special way. Once I began seeing through the lens of autism as a different way of looking at the world, I started to notice these installations all over our home.

My name is Amelia, and I am an autism mom. This sounds confessional, but I assure you that if you saw me out in the community with my son, you would either think (a) that I am an autism mom or (b) that I was a terrible parent for allowing my child to act the way he does sometimes. There’s just no hiding it, and I wouldn’t want to.  I would never have chosen to be an autism mom, but at this point I can’t imagine being any other kind of mom. Just as I couldn’t imagine having any other kind of child.

Amelia to Singularity: You’re the perfect kid for me.
Singularity to Amelia: You’re the perfect mom for me.

Be still, my heart!

My treasured boy, whom I shall call “Singularity” for the purposes of this blog, recently had his ninth birthday. He is a singularity, along the lines of the old saying “if you’ve met one person with autism, you’ve met one person with autism.” In other words, all people with autism have their own individual flavor of autism, their own particular strengths and challenges. I also like this moniker, because of technological and quantum physics usages of the word. And because it reminds me of Star Trek: The Next Generation.

I am starting this blog for mainly selfish reasons. I want to elaborate on my thoughts about the experience of being an autism mom in more depth than I might if I were just writing a personal journal. I kept a personal journal for many years, and my experience of it is that I just didn’t explore things fully when I was writing for myself. After all, I already knew the context for everything I was writing. I think that the process of doing outward-facing writing will make me reach deeper. If this helps any other parents in a similar situation, all the better.

I have chosen this wordy blog title for two reasons. First, people with autism may have different views of the world than the rest of us. I don’t believe that we “neurotypicals” can really imagine what it feels like to have autism, but I do think that we get an occasional glimmer.

Second, autism moms have a different way of looking at their children’s development. We look at our children’s behaviors that are considered inappropriate for children their age by the wider world, and we rejoice to see that our children are reaching developmental milestones  that their age peers have long since passed. Seeing our children do something "normal" can bring a tear to our eyes. It is also painful for us to watch our children struggle with things that come easily to other children.

OK, maybe there are three reasons. I am a former librarian, a present-day indexer of books, a lifelong reader. I love words. My husband loves words. We are a wordy family. My son learned to read when he was 18 months old. So, naturally this blog must have a wordy title. 

I don’t know yet how I feel about allowing comments on this blog. As I alluded above, I am used to people criticizing my parenting. I am inured to that. But being an autism parent is a journey through Elizabeth Kübler-Ross’s stages of grief. After all these years, I live mostly in the acceptance stage. But if someone were to post an inflammatory comment on a day when I’m in an anger or depression phase, it could be devastating. So for now I have turned commenting off. Please feel free to email me at AutismADifferentWay(at)gmail(dot)com.

Update as of 11/7/2013: I have decided to turn on comments, so that it doesn't feel as if I am writing into a void. I hope that people will be kind and respectful.