Estée KlarThe Joy of Autism

As you read yesterday, I lost Adam for about 10 minutes. It seemed a lot longer. When I returned home for the day, I was feeling down. I thought, just when things seemed to be going so well…another challenge. Then, my ceiling leaked from the rain.

Ah well, I said to myself as I opened my eyes this morning. At least Adam had the sense to re-enter that church all by himself. At least there was no tragedy. At least my roof isn’t caving in. Someone is coming to look at it hopefully later today.

I think it’s good to let the down go through us — to hibernate after an event like this. But I also reached out. I contacted every team member, my friends. I was so surprised by the deluge of support. I realized, that even as I think I’m alone, a single mother, I am not. I learned this by not keeping yesterday’s event to myself. I realized that I cannot do everything by myself.

I am really grateful to my friends, family and Adam’s support team who are always there for us, and even you readers who take the time to lend your support by commenting here and on Facebook. For me, writing is a way to survive, to think, to overcome my challenges. I cannot let them fester. Other people manage other ways. I manage this way.

I spent many years learning how to build a strong team of support. I realize that network has been carefully woven and I’m in awe of the time it took. I hope to be able to write a piece how I was able to create this web of support, and the trials of putting it together.

When we are building teams for our children, we have to look at good fits. We have to feel good about who is working with our children. For myself, I could not hire people who treated Adam in a way I did not want him to be treated. It was simply an intuitive way of parenting him. Building a team later became supported by what I was reading and hearing about certain therapies and ways people with disabilities have been treated. I never realized it, but I have a distinctive parenting style. I appreciate sensitivity because it suits Adam’s needs. I love kindness. I adore when people realize he is a person full of potential, despite his challenges. As I built a team to support Adam, I realize I also built one to support me in my ability to parent him. I realize my limitations and my need for others to help, and how we work as a unit. I am his mother. I am suited to loving him well. Although I teach him as a parent would, I am not a great teacher. I reach Adam by being gentle, not impatient. His interest in music and art is nurtured by my interest and activity. I’m good at a few thing and not good in others. When I think Adam needs to learn something I cannot teach, I am happy to hand him over to those who can give him those other gifts.

I ended the evening yesterday talking to one of my best girlfriends. She has a typical daughter. She talked about how she lost her daughter at the cottage. So many parents have reached out and told me their tales of losing their children — typical and autistic. When I rethink everything, I realize that exploring is a rite of passage. Adam wants to be independent — the very trait we want our autistic children to learn. He wants to explore, hide, and thinks excitable voices are really funny. I wonder if we target the autistic child for wandering, like so many other challenges, and forget about how the typical child does the same things as our autistic children do. The age ranges may be different, but sooner or later, it happens. Sure, I’m nervous about this and will be on top of it as will his team. Yet there is a side of me that thinks — tragedy averted, of course — that he made his way back into the church. He wants to explore and do his own thing. He tried to make his own popcorn the other day and wrecked my microwave. I mean, how many parents have the same story of their homes being near destroyed by a clever, well-meaning child?

It’s time to support Adam again and make a new plan. We have to avoid danger and we have to support his need to explore and be independent now. I just have to learn to keep up.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

I haven’t written because I’m having nightmares. Last Sunday, the house I built with Adam’s dad (it took us from start to finish maybe three years and a bit) went ablaze. It’s completely ruined. The outer structure looks fine but the inferno shot flames twelve feet out of the garage. The entire inside is charred and burned.

I was the first to get the call. My neighbour/friend called me in trying to reach my ex, “Es, there’s twelve foot flames coming out of your garage!” she panicked in her othewise cheerful South African accent. I told her to hold on as I frantically tried to contact Adam’s dad who was in the air enroute home. I fumbled with my cell phone calling every number I could think of, and the people who might know where he was — my voice was urgent. Adam quieted as he could see something was wrong.

“You should see it, man! There are firetrucks and police cars everywhere. There’s so much smoke you cannot even see down the street,” said my friend when I called her back. She sounded out of breath and I noticed that my hands began to shake. I learned in the meantime that Adam’s dad would land with devastating messages on his Blackberry.

I could not go to the house right away. I knew it was being looked after. I could not go to the house where I moved my toddler-Adam into, now completely ruined. I went later after I gathered my thoughts and courage.

All I can think of since that time are the what-ifs – that stuff people tell you NOT to think about because thank God no one was in the house and everyone is safe, bit. It’s just a thing, some say. It can be replaced. While all of that is absolutely true, I do know that this new house Adam and I moved into rebuilt me. I know intimately, the value of space — how we shape it and it shapes us. I put every bit of my energy and spirit here to start our new lives…and it’s lovely, I have to admit. Adam feels at home here and we two cheerfully snuggle lots on our comfy couch.

Adam felt at home there, too. Adam’s dad and I have managed to keep his routines and environments as consistent as possible. So, we decided not to tell Adam about the fire or take him near the house. It’s not necessary to expose him to such tragedy when environments are so important to him and when he might fret over a disaster over and over like a bad commercial jingle we can’t get out of our heads. Thankfully, he is used to his dad’s parent’s house where they can stay when they are together. In the meantime, as his dad figures out what comes next, we can prepare Adam for his next move.

That’s the practical side of me. There’s that scared sick side, the what if side that is giving me nightmares, and yes, a grateful side that we are content in our new home, and that everyone is safe. It was a a disaster indeed, but a tragedy averted. It has opened my eyes — yet again — to the fragility of everything.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

As Adam begins to get older and the more options that become available to him, like overnight camps and aide workers, I am more attuned to the many stories I hear regarding the abuse of autistic people. There was a time when Adam and this blog were younger, that I had followed a website that tracked nearly every case of murder and abuse. It’s hard to get wrapped up in that for too long. One has to know when to look and when to carry on. There is fear and then there is awareness.

I never bought into the “recovery” model of autism — that the onus was on us and our children to “become normal.” To blame the autistic person or a family for a child not being able to talk is ludicrous and unsupportive. Rather, I believe we have to keep aware of the many cases where vulnerability lies, and provide the finanical support so that families can hire the aides they trust. While nothing is fool-proof and many of our children can be susceptible to abusers, autistic or not, it is helpful when parents have the right to choose a school aide or any type of support worker. A parent or primary caregiver should have the right to turn down someone they do not feel comfortable with. I say this because many children are ascribed workers and Educational Assistants here in Ontario. It might be assumed that if one needs financial support, then one must accept the individual ascribed to them. If it’s an issue for the family, that is if they want to change the worker, there seems to be a lot of red tape. I want to reiterate that the right to a support worker, that both the autistic and the family are comfortable with and trust, is an accommodation and should therefore be a right for autistic individuals.

More and more, I believe that autistic people, including our non verbal children, and parents must be central to the process in building our support teams. As I’m seeking camps and other activities for Adam to grow more independent and enjoy his life, I want to try my best to ensure he is protected. I’m not sure I can at all times, and maybe that is the most frightening part. Yet, Adam can indicate to me when he’s distressed by virtue of his behaviour. Just transitioning to a new home and a new school, he indicated to me that it was very difficult by body-jerking and losing some of his words. He was disorganized and needed more physical stimulation. He also expressed more repetitive behaviours during this time. Of course, Adam is still learning how to communicate in a typical way by typing on his computer and his devices.

These behaviours, however, were such important examples for me to see how Adam can express himself during stressful times. It is something I am tuned into now as he grows older and perhaps will express other distressing things to me where he needs more of my intervention and support.

For more reading material on autistic abuse see neurodiversity.com.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

Safety is a big concern for many autistic people. Sometimes, it’s just not possible to walk across the street by oneself, even though one might be extremely intelligent and capable in other areas. I think of this often so as not to be disappointed if Adam will need assistance in the future. As a parent, I consider it one of my obligations to Adam to ensure his safety. I therefore do everything I can, with the help of others too, to teach Adam safety skills. In the event I cannot, I try to ensure his safety in other ways.

One thing Adam loves to do is go for long walks. On the verge of beginning a new school tomorrow that will teach him safety, social and other life skills in addition to academics, Adam and I took a walk after dinner to his favorite icecream joint. Adam does not run off into the street, so lately I’ve made sure that he walks alongside me without holding my hand. This way I can see how he can walk pretty much on his own. It would be his tendency to flap his hands and look to the ground, and I have no issues with hand-flapping except when he is in an area where he really needs to be paying attention to his surroundings.

“Walk safely,” I repeat. I have chosen this instead of “nicely.” This is not about looking appropriate or “nice.” This is truly about keeping one’s eye on the cars and other hazards. Adam listens. He knows what this means now and he is walking and looking around him.

“What’s coming up?” I ask Adam approaching an intersection and prompt him with “in.” “What do you have to do here?”

“Stop,” he says abruptly.

“Stop and?”

“Look bot ways,” he says, his words staccato, unfinished, and somewhat robotic-sounding.

“Right. And what are you looking for?”

“Cars,” he says loudly.

“Is there a car coming?” I crouch down to his level pointing around us. Adam looks and answers a yes or a no, depending on whether or not there is one.

I am rather pleased this evening. With the constant repetition of this script that I’ve made up after numerous walks up and down the same heavily trafficked streets, I feel that we’ve made some headway.

I’ll be repeating this routine over and over again I am certain, even if I’m not certain if Adam will be able to one day walk the streets of Toronto safely on his own. It’s worth trying. Worth repeating.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

Lately I’ve used this term: “the normal path of autistic development.”  I use it because I do believe that the path of autistic development seems to take on familiar patterns like later acquisition of language, motor planning skills and social skills, to name some. So, although we recognize that while autistic people are similar they are, like all people, also very unique. For the purposes of this post, however, let’s just say, it’s often more elegant to compare apples to apples.

Every once in a while, however, I go check out the oranges. Perhaps it’s because I’m a first-time mother to an eight-year-old boy. I’m quite familiar with that path of autistic development as I find stories in common with other autistic individuals and the parents of them. Yet as a parent of a young boy, I’m curious about the typical eight year old boys. Aside from the speech, the social skills, the sports (among other things),  I notice that Adam is becoming a, for lack of a better word, typical eight-year-old.

Case in point:

He is curious.

I can’t keep up with him in the house.

He wants to be independent and doesn’t want my help.

If I tell him to stop doing something, he gets angry with me.

He climbs and moves and climbs.

I tell him not to.

He does it anyway, even though I know he understands.

He thinks disgusting things are funny.

I don’t like it.

He thinks that’s funny.

I feel out of breath trying to keep up with him.

He thinks that’s funny.

He seeks out attention.

He likes attention.

I find myself sounding like a nagging mother.

I don’t find that at all funny.

He knows things.

He figures people out.

He can manipulate people.

He is becoming more aware.

He is becoming self aware.

That makes me short of breath….my list goes on…..

Are we getting the point? Adam is a boy full of beans. He is growing and maturing and often gets frustrated because he wants to be so independent. That sometimes gets me frustrated as well because I wonder why I feel so ill-prepared.

After climbing upside down into his trundle bed and tearing off the guard rail (I guess he means to say he no longer needs it), I decided to pull out the old Alphasmart Neo keyboard that is so handy to carry around because it is so light weight. Even though we are practising on the Vanguard, a much heavier AAC device, I find the Alphasmart still useful in a pinch. Adam has been practising writing stories on his computer independently. We write them out together, then transpose them, if you will, onto the computer to improve his typing skills. I was quite pleased today to see how his spontaneous communication via typing has also improved. It helped us calm down before bed time this evening and he told me about camp, his counsellors and his day. His body calmed and he was not just the active eight-year-old, but a more empowered one this evening.

Adam wants what he wants when he wants it, sometimes. For the most part, he listens, puts away his things, is now more inclined to get his own things. Then I wonder why I am so out of breath. I mean, it’s what we’ve been working towards for so long. He can put on his own shoes, is beginning to dress himself (okay not perfectly, but I don’t care), and wants to give himself his own shower (I am fearful of the hot water). For certain, I must worry about safety and must always try to stay a step ahead of him. It was this boyish progress that prompted me to check out the oranges. I realized that really, all kids are the same. Just because some can or cannot do certain things, it doesn’t take away the will or desire to do them. Just because Adam can’t talk fluently or initiate play with other kids regularly, does not make him any less of an eight-year-old.

I’ve known that, but to live through our autistic kids’ development just be different for us parents, after all. For so long, we worry about what our kids will not do, and we spend inordinate amounts of time and resources trying to teach them how to do things. There is nothing wrong with this!! Yet when it happens  we sometimes speak about our kids as a series of behaviours instead of noticing that they are growing and maturing as they should — as they should differently, autistically and at the same time, very similarly to any other same-aged child.

I must consider to stop running out of breath and learn to just breathe.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

I am writing this at 3:00 a.m. I left Adam’s room at approximately ten o’clock hoping he would go go sleep. I know I did, but I suddenly woke up at two. I was hoping to fall back to sleep but decided to heed some sage advice and not fight it. I’ve heard that if you cannot go back to sleep, just get up and do something else. The sleep will come.

Sleep is a huge issue for many of us. I remember three years of complete sleep deprivation after Adam was born: three hours of soothing and rocking him alone in a dark room, creeping out of his room on all fours because the floors were creaky and would wake him, only to have him wake up every hour and a half anyway. I remember feeling tired, frustrated and this certainly had an effect on the way I interacted with Adam in the early years, and I didn’t even get a reprieve by way of a naptime. I tried to “Feberize” him to no avail.  I was always flabbergasted that Adam could keep on going on such little sleep. Later on, we discovered Melatonin  which is the only thing that usually helps him fall asleep when he is particularly wired, except for these monthly anomolies where it has zero effect, and I have not discovered the reason specific to Adam.

As I began to quietly descend the stairs in what is typically called the dark night of the soul, coined by F. Scott Fitzgerald,  I hear Adam mumbling softly to himself — quite a change from the infant and toddler days when he would cry.  In fact, my office is directly underneath his bedroom and I can hear him moving about contentedly right now.

I write this because it’s another feat in our coexistence as two different kinds of people. It used to be that Adam would make much more noise and I would spend hours trying to settle him. Perhpas because of experience, knowing that autistic cicadian rhythms have been reported to be different in autistic individuals, I have decided on an alternate strategy: not to fight it. I am teaching Adam how to stay alone in his room quietly and do other things. It still requires some of my effort, my reminding (and perhaps some dark circles under my eyes in the morning), but I know it will be worth it as he is growing and maturing.  As he grows older, he will be able to use this time to read, study, work on the computer, but right now I would hesitate putting him on the computer because he will gear him up rather than wind him down.

This happens to Adam about once a month, I’ve recorded. He seems to wake at 2:00 a.m. and he goes to camp or school and has, usually a fabulous day while I am otherwise dreary-eyed. Still, I am discovering that I too am developing a remarkable energy that I didn’t think I had before. It’s amazing how things don’t feel as difficult if we try to work with the circumstances. In fact, I planned on reading and writing a bit before I realized that Adam was awake.  I’ve ensured that the house is safe in the event I do doze off and he decides to roam, and this might be in large part why I can relax.  So far, Adam stays in his room.

I suppose the only thing is my sensitivity to Adam. I didn’t think I  heard him at two, although I must have. It would be nice to know thatI can sleep through the night while he does what he has to do….safely. We’re getting there.

I sit here writing sort of amazed at how far I’ve come in this. Another milestone, perhaps, not for Adam, the autistic child, but for Estee, the autism mom. It’s past three a.m. now. The dark night will quickly turn to dawn.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it

This is the first article published by realtorsthatcare.ca that I wrote on making safe yet attractive living spaces for autistic children. Thank you, Zeshan, for both caring and for being interested in this topic.

While safety may involve anything from picture symbol reminders to locks, I’ve also paid attention to “safe spaces,” that is, making safe sensory places where Adam can escape and learn to self-regulate. As I mentioned in the article, as I learn about what Adam needs, I like to create fun, aesthetically-pleases places and devices that both Adam and I can live with and enjoy.

Photo credits (and all good photos of Adam are taken by) Mike Klar whose work is linked here.

• Digg this post
• Recommend on Facebook
• share via Reddit
• Tweet about it