Sometimes a simple photo inspires me. This one was taken over a year ago. The gal Adam is holding hands with is the daughter of my most beloved girlfriend in the world. Life got a little hectic for everyone and Adam didn’t get to see T (the girl) too often this past year.
T was here with her mom about a week ago and in Adam’s way, he swam at his own pace, doing his own thing. The water calls him to dive under, I imagine because the feeling around him makes him feel secure. For Adam, tight spaces and squishes are an essential part of living well. T was diving into the pool with such enthusiasm, asking her mom to “look” as she demonstrated the various poses while jumping and then plunging into the water.
In the picture above, we had spent a weekend together in the same hotel room. Adam got cozy with T, although in Adam’s way it always takes some time. Last week, Adam watched T closely, sometimes doing his thing, gazing out of the sides of his eyes, sometimes watching her straight on. Unlike other children, however, Adam cannot yet consistently initiate play or “get in there” at the same pace. I know that if T were around a whole lot more, he would be following her around, or at least he might go along with what she wanted to do.
It’s just that way with my little autie. He is like the proverbial cat circling and scoping. Eventually he’ll just snuggle in your lap.
In the sweltering heat, Adam has returned to the camp he has attended for several years now.
“Hey Adam!” the counselors greeted, eager to embrace him under a tent yesterday which did not quell the wall of heat in Toronto. Adam processed the swarm quietly, standing before the semi-circle of enthused pubescents taking his time to assess the environment and some new faces, let alone the emotional excitement and kindness before him. Sometimes it just takes some time before Adam is ready to jump into their arms with a like embrace.
Before yesterday, Adam and I spent the week together — that space and time between the end of school and the beginning of camp. Long, hot days needed to be filled because Adam doesn’t love to stay at home. He loves to go out and explore new places all the time. He likes to walk and walk, and if there is an intriguing pathway or staircase, he might convince me to go along with him. Sometimes I can convince him to come with me too, and so “well-behaved” is he with his now single mom who needs to get “stuff” done. I find myself, in my newer role, asking for his patience with me and he obliges generously. I realized that we have become quite a dynamic duo in our new circumstance, although I admit that being a single mother of an autistic child isn’t always easy in the sense of Adam’s differences and my need to always check my beliefs and expectations at the door.
It also occurred to me that my mother, in a different time and circumstance, spent a significant amount of time with me. She lugged me to the grocery store, her doctor’s appointments. Where-ever she went, I accompanied and I recall what an important life lesson this was. I got to see how my mom acted around the doctor and the dentist; how she interacted with the butcher, the neighbour, the banker, and how she negotiated with life.
In this day and age of programs — and don’t get me wrong, I believe children benefit by them — I not only thought about how children lack going outside to play the way we did when we were kids, but that I tend to get things done only when Adam is in his programs or in school. My parents didn’t have the benefit of such programs. Nor were they considered as necessary in the day-and-age of “go outside and play until the sun goes down.” I suppose our parents got things done when we were out of the house too, but I remember being more connected to their activities overall.
Certainly it’s not safe these days to let our children out all day long without supervision. The world is a changed place indeed. For my autistic boy, safety is of vital concern, friendships are not made easily, and he would wander off and get lost if left to his own devices. Adam’s playmates are aides and kids with aides, camp-mates and like children in music, art or sports programs. Sigh…the world today.
Yet last week, that dear week, I had Adam to myself. Adam accompanied me (almost) everywhere and didn’t complain, in fact, he seemed to enjoy every moment with me. When someone stepped in for a bit to see him, he took me by the hand to insist I come with. All parents know those days when the babysitter arrives and the child doesn’t want mom or dad to leave. My son Adam didn’t express that all too much when he was two and three-years-old. At eight, he is able to show it more.
And so, last week when I left to do some more grocery shopping on my own Adam asked his aide, “where’s my mother?” For a child only beginning to talk in sentences, and ones that are still very hard to come by, it’s quite a question. Perhaps he had been thinking that all along. In those earlier days, we parents may be inclined to think that just because our autistic children are not verbally articulate, that they are not wondering, thinking or understanding so many things the way a typical child might. Surely this sentence, relayed by his aide to me, was music to my ears, but I’ve never ignored the fact that I think Adam often wondered many things.
As I walked into the house carrying a load of groceries, overheated and glad to be home, I saw Adam at the end of the hallway in my kitchen, eating his snack looking at me, beaming from ear-to-ear.
This is the phrase that Adam begs of us when he wants to jump.
Here is a video of Adam that his dad taped which may just put a smile on your face as much as it does mine. This is the kind of exhilaration I think we all need at least once a day!
I haven’t put music to it yet. I was thinking of the song When You’re Smilin’ by Louis Armstrong. Then again, I sort of like it without any music at all.
I have to admit that I’m adjusting to my new role, still, as single mother. There are lovely days, like yesterday, when I want to spend my time with Adam. We awaited a thunderstorm that never came, but watched Disney’s Mulan anyway — a movie Adam has not yet seen. Adam is more interested in watching movies from start to finish now that his attention is stronger, his awareness keen. In the “early days,” Adam could only sit still for about ten or so minutes and movies were simply not possible. These are rather nice days, like the time today we spent walking around the Scarborough Bluffs, listening to the waves gently swell upon the shore and watching the geese fly off as elegantly as immaculately set-up dominoes. Adam lead me to the shore-side restaurant and we ate together. I’ll admit that sometimes I miss having someone to share this with us, and then again I cherish every moment now because I have learned that life changes in a moment.
Sometimes we spend our afternoons by the pool and he is content in what I have called his nest (see picture) — I have this chair outside even though the rain is determined to wither the wicker away. He will curl up after a swim and stare at the maple leaves hanging above him in the sunlight, reluctant to depart at my declarations that he must be getting cold and it’s time for a hot shower. No, he prefers to cuddle up and listen to the birds. I don’t blame him — it was the same chair I healed in after surgeries a couple of years ago and I dragged it outside because it’s far better to heal outside than in.
As his treat, I purchased Adam a new nest for his room today so I could put it in the corner where he has come to read his books. I placed it under a canopy I also created for him with twinkling lights when I set up his room in his new house. Like all things these days, it was over-wrapped. We arrived home and I was determined to get this simple task done for him. He helped me lug a bag inside and I asked him to play on his own nearby. He wanted to eat, he wanted to do something else — he wanted my help.
“Adam, mommy doesn’t have any help so you have to be my helper today,” I said. New single-mother talk, I’m thinking. But I’m also thinking how frustrated I am over trying to do everything as quickly as possible, wishing right now, in this moment, that I had someone to do it for me so I can turn to Adam instead.
“Just wait, Adam,” I say with irritated breath, unraveling yards of ties and cardboard with an inappropriate pair of kiddie scissors that were handy. It’s me that I realize I’m telling to wait, though. Adam is doing just fine.
I struggle to carry the big hoop of the chair to the upstairs and set the chair up, going as fast as I can.
“Come see, Adam. Come upstairs,” I am now asking after I just told him to stay put. I imagine my son thinks I’m nuts. He obliges me and goes into the chair and curls into it contentedly reading his series of I Spy phonics books, reminding me that “it’s not a horse; it’s a duck.” His language skills have improved. He talks in more sentences, in particular to tell me everything he sees. I suck in some air and sit on the edge of his bed, enjoying him enjoying the chair. I like to watch Adam happy and calm. Heck, I like to experience myself happy and calm.
I know I have to prepare dinner. The grandparents are coming soon, Adam was searching hi and lo in my kitchen for something, as usual, to eat. It’s a wonder the boy is so slim with all he eats.
I am breathing more calmly thinking that I know I can’t do everything at every moment I want to. I know that something’s gotta give; of some things I must let go at certain moments, and maybe even for life. I am still in that growing phase of learning to be on my own as a parent. Although life isn’t bad, it isn’t the same when you have to do everything yourself. I am learning, still, after two years to be okay with this.
While I get a lot of snuggles from Adam and a lot of kisses too, I realized that I don’t get a lot of “how are you’s?” from anyone, really. I don’t get the “how are you really doing?” kind of caring-talk. I suddenly realize it when Adam pops out of his room and hollers from the top of the stairs, “I wub you!”
“What?” I ask loudly as I am in the kitchen preparing food.
“I wub you mum!” All his words were spoken with force but with the same intonation. Then, I hear him go back into the room and shut the door.
I am stunned. I think Adam is saying thank you for the chair, for his little nest. I think he totally knows how much I love him.
For over a month now, Adam sings this song a lot to me. It’s so ironic, isn’t it? My “little guy,” as he now calls himself, is beginning to talk more, is in to show-and-tell, and even playing the “teacher” — asking me to answer HIS questions (as if I didn’t already know that he is the Master and I am the student), and his voice has grown louder when he talks as if he is saying HEAR ME, HEAR ME… HEAR ME!!! When he sings this song to me, I imagine him thinking of how indeed when he grows older, he knows he will grow stronger.
“This movie is rated G and is suitable for all audiences.” Adam sat on the couch when we arrived home from Florida, both of us exhausted after waking at 3:30 in the morning to catch an early morning Westjet flight that was cheaper than the rest. The early bird catches the worm indeed, but you have to be prepared to be sleepy for the rest of the day. As I turned on a movie for Adam and I to watch together, this silent caption came on the screen and he read it, fully understandable to me. Adam’s speech over the past several weeks is becoming markedly clearer. Then, something suddenly went wrong with my cable box (as it has all year long — I need to write a separate post on the ABSOLUTE RIDICULOUSNESS OF TELEVISION TECHNOLOGY AND HOW FRUSTRATED IT MAKES ME, but let me save that for another day), and then the sound went mute.
“Oh my God!” exclaimed Adam. “Oh my God,” he said again like a Valley Girl. It is something that I say when I’m COMPLETELY AND UTTERLY FRUSTRATED WITH THIS NONSENSICAL TECHNOLOGY, and my boy is listening indeed. Coming out that cherub mouth, that voice that still sounds so very tiny let alone the mouth that says so little, I am of course ecstatic and laughing.
“You’re right Adam,” I affirmed by hugging him and scruffing up his dark blonde hair, “Mommy is really fed up with Rogers Cable. Just wait and I’ll see if I can fix it.” I attempted changing inputs, mumbling my frustrations to myself lest Adam learn some words I’d prefer he learn later on in life, checking cables and rebooting several times — all which seem smart and logical attempts at fixing the sound problem. Instead, Grandpa, who studied electrical engineering no less, jiggled the box and voila… the came sound back. If only I had thought of that. There is irony in this, I hope you see. Sometimes we try so hard to fix things when all it needs is a little jiggle.
I have to say that this Monday morning, the day after Adam’s 8th birthday and back to work and school, I am kinda floating on air. It was very apparent to me how much Adam needed me during this trip and how happy he was to see his mother happy again. Something has shifted during the heavy period of separation and we seem to be settling in. I think it started when I created my own space, made it mine and began to live in it. I knew that fixing a house was a process of also fixing me. I had thrown every effort and last bit of energy making it Adam’s and mine — a place where we could be happy again, and it saved me during this most difficult time. Yet by throwing myself into this, Adam was also needing me. While I was still living in the matrimonial home during the process of fixing up this house, the weight of it felt as heavy as being buried six feet under. The house I had built with my ex now came to represent loss. The foundation that had been faulty in that house and needed rebuilding, so symbolic. So how fortunate I was to have the time to create something new for Adam and I — something now that I have come to appreciate so much. So blessed do I feel today with spring upon us and having finally made that move so that we can move on with other things.
The house has a lot of light which was important to me when I found it. I wanted Adam to feel the light and the air as well. Moving was tough, as many of you already read in previous posts. For Adam, security is found in environments. It takes him time to adjust and this was extremely difficult beginning from late last fall. Every time I thought we were over a hump, we were right back where we started with really bad-looking spasms. I did not see Adam smile very much during this period, and it made my sadness and worry ever more pressing.
Despite having the house prepared, there is always more work once one moves in — things don’t work properly and living in the house day and night, I began to feel how it wanted to live. The house asked me to learn all of its idiosyncrasies. It asked me to support it and work with it. It has been a couple of months now since we moved in and I believe I am getting to know her well. I think the house is certainly feminine because she is beginning to support us.
In Florida I was relaxed and didn’t worry about the house or anything back home as I had in the past. I had completely relished in taking Adam many places, and swimming with him every day. I noticed his great huge smile returning, the way he listened and talked to me more than ever before. It seems every year and every trip and every new experience (even after hard ones) sends us forward again. Adam wanted to be with me so much as he grabbed my hand or told me what he wanted to do, looking up at me, smiling. All he wanted was his mother back and all to himself. Going through divorce I know I had tried even harder to be present for Adam, feeling so guilty about the breakup and upsetting his life. Such contrast in my states of being seem so stark now that time has passed and I am feeling relaxed again.
Returning from the airport was a little strange as this was the first time we would return from Florida to our new home and I realized it when we took the new route. I was concerned that the house would feel foreign again after nearly two years of hard labour and emotional work. Yet, when Adam ran up the stairs towards the front door, threw off his shoes and ran into the kitchen with a great big smile, that was it.
I did it, I thought. I made this house a home. Adam’s smile and getting right back into his routines was testament to this and his being here with me upon a return was one of those markers in my life that I will never forget. It was as if he gave me further permission to relax as he stuck in his metaphorical flag in our family-room floor. We belong here and we belong together.
The following day I set out hurriedly to prepare a birthday party for Adam that was suitable for him — the chocolate birthday cake, the sparkler, his favorite friend and cousin, and some family. Presents came next. The boy who never understood that there were presents underneath that paper several years ago (the paper had been entertainment enough back then) has learned to open them with greater anticipation. He was happily answering questions and hanging out with people, and took his favourite friend by the hand to show him his room. When we parents checked in on them, they shut the door on us, not wanting us to disturb their playing.
Adam’s happiness clearly has a direct effect on mine, and mine seems to have an effect on his. His happiness over the past twelve days has helped me and his feeling at home in his new house makes me feel as if I’ve earned, and learned, something important. Both the house and Adam pulled me out of my head during one of the toughest times of my life. Adam needed me every day and it was every morning that he got me out of bed during the first six months of my separation. Then, it was the house and a vision of Adam and I being happy together again that became a necessary obsession. Working on the house was the promise of hope.
While I have not written about my situation, and my deadline for finishing my manuscript is the end of this year, I’ve come to realize that even writing about writing here is a little difficult because I’ve been so close to intense emotions. I’m not so certain that no matter how a divorce happens, that the details matter in the end, although they make for my truth and the story itself. A marriage is so utterly complex that it is difficult to pinpoint one exact reason for it not working, and it is simply too easy to cast blame on people. For now, that’s all I say about the subject, except that like I always talk about in autism, life is supposed to be filled with challenges and joys. We so often want to avoid the things that are difficult but we forget that all of life’s events are unavoidable so we might as well live them well and let them build us. For that reason that I must be an optimist by nature and I will always be a risk-taker. I will always believe in love, partnership, marriage — whatever works. I believe in it even when I have tripped and fallen on marriage before.
I am still on a path on my own and with Adam. I am finding out where and who I am again. These are two separate things — this healing from divorce as well as raising a son with autism, yet I cannot avoid intertwining the experiences as Adam and I grow together. I do find it difficult to relate to other people who are divorced, for they do not have autistic children, and going online to talk about parenting children with autism is a little difficult when the parents are not divorced. Like my house, our lives are unique and we are growing into them every day. While I’d love to find easy answers on some days, or support networks on others, they never quite hit the mark and then I realize that I am truly on my own, no matter how supportive and uplifting friends are.
After all the guests left after chocolate cake on a sunny spring day, I remembered the day Adam was born and showed him a picture that sits at the entry of his bedroom with his birth announcement. His dad was equally excited the moment Adam was born and it felt a little odd that he was not with us yesterday, but I plugged on knowing that this absence is now permanent, at least for me, and our relationship as co-parents is also evolving and growing — all another step in accepting what is and what makes Adam and I a complete family. I let the moment pass through me thinking back to those eight years and quietly asked Adam to the wall where I could measure how tall he was. I miss the old measures in our old house where I marked the wall there beside his bathroom. I no longer have the measures when he turned two, three-years-old and so forth and something about that makes me feel a more profound loss, as simple as markings on a wall beside a bathroom may seem.
So at twilight I asked Adam to stand next to the rocket-ship measure I placed on the wall beside his new bathroom. He stood against the wall and I put a book on his head to mark it right, saying very little, feeling hushed by this moment:
47 inches
Adam, 8 years old
April 11, 2010.
Right there, on the wall of his bedroom. Like the flag being put into the ground.
A continuance of my last post “My Very Important Job,” I want to talk about how Adam becomes very relaxed by the ocean. The sound of the waves, of course and that beautiful sunshine — everyone was out on the beach yesterday on Easter Sunday, digging in the sand and laying around like beached whales. Adam I spend our days together and I take him to restaurants and new places to explore. I take Adam many places in order for him to become accustomed to them. He also enjoys new places especially when he’s relaxed. It is my goal as Adam is able to travel — although we have had difficult moments in our eight years. Yet I’d have to say that the difficult ones are rather rare, which might be why I tend to spotlight them when they occur. It’s funny, really, because as I talk to other parents, it seems to me that other “typical” children have had heart-wrenching tantrums. When Adam is distressed, what is heart-wrenching for me is not the “behaviour” but rather the fact that he can’t tell me with words what he needs. As his mother, I’ve had to learn to never take Adam’s movements, gestures, even types of cries for granted. They are all important pieces of information to me.
The kind of transitions that have been happening such as moving into a new home during a divorced situation is not fun for any child. Adam had his moments of extreme anxiety. In fact, it went on from the late fall until late February. A long stretch like that made me wonder if I’d ever see him smile again. Even though I knew it deep down in my heart, I did experience those moments of absolute panic.
Being in the south with Adam reminds me how anchored he is to me; how much he needs and wants me, not to mention how much he wants to see his mother smile. Watching how much he reciprocates, plays with me, wants to go everywhere with me, and talks (yes talks — he is very verbal down here this trip), is testament to the need for quality time spent with mom doing easy things. It’s also proof to me that I have to work on my own happiness and spend time doing the things I need to do to nurture it because I am not just doing it for myself. It has taken me two years to begin to realize this.
During that transition from fall to late February, there were days when he was so stressed that Adam didn’t even seem like Adam anymore. If I were a parent who would use this kind of lingo (which of course many of you know I am not), it may have seemed like “he wasn’t even in the room,” (which we know that of course autistic people are aware despite what others think of their behaviour, but this seemed like the appearance of a what Kristina Chew has coined the “neurological storm,” and I like that expression very much in terms of describing what these moments are like). For others who distill autism into that robot-type of cold person, Adam may have appeared “distant” — that we were “losing” him. He had lost all of his words, even. For Adam in particular, who is very affable and connected to people he knows well, this was a stark contrast. Yet, maybe mom was similar. Maybe it seemed like mom wasn’t really in the room anymore as I was trying to find the ground beneath my feet again after separation. I wonder how I may have appeared to my son.
Here, happy, relaxed and spending all of our time together, Adam has spoken the following:
Scenario 1: Browsing through a Payless Shoe Store looking straight at us: “Are you done yet?” Now for a parent with a more verbal child, this might seem like a nagging comment. For a parent with a child with few phrases, we were so happy, laughing hysterically!
Scenario 2: Getting ready to go but mom is trying to find her keys: “Let’s go, let’s go! Time to go, mom!!!”
Scenario 3: As he is doing something contentedly and I am trying to rush him out the front door: “Be patient with me.”
Scenario 4: After swimming and tugging on a wet bathing suit: “It hurts me.”
There are many more phrases coming out of his mouth down here in South Florida. He is not speaking in paragraphs, but such sentences are really nice surprises that this mom obviously doesn’t take for granted. Of course, Adam also has lots of physical activity down here. For a child like Adam who always needs to move around, a full day of swimming, running on the beach, climbing and swinging at the park, and going for long walks all seem to be another key to organizing that precious neurological system of his. Mind you, I’m not sure how to replicate the extent of this — the sheer quantity of exercise back in Toronto. Yet it’s another clue into how Adam needs to organize his neurology and attests to the things that make him feel happy and calm.
I had a very important job today. One that surpasses all administration, bills, and the like. My mandate for the day? Make Adam giggle… a LOT. I realized that he hasn’t been giggling as much as he used to. Adam, who is about to turn eight, is becoming a much more serious little boy, but he is also a little boy who is experiencing so many changes.
Adam is on vacation and as usual, we head to his home away from home: Miami. I haven’t been away with Adam since December and we are both having a really good time. Adam looks up at me often and smiles, hugs me, grabs my leg and is a lot more verbal down here. He seems glad to be spending lots of one-on-one time with his mother who is not otherwise distracted getting our lives back on track. I realized, while walking along the edge of the ocean hand-in-hand with a contented little boy, that in between school and programs and the big move, we have been drifting through our days trying to survive all of the changes of separation and divorce. While it’s a part of living, may it only be temporary! Adam sure likes his mother happy (and so it goes, mother likes Adam happy too).
Sometimes we just keep doing things day-after-day and we forget about the sun, the ocean and the importance of doing very little in order to make room for all of the possibilities. In the sea of change, we try so hard to find the lifeboat forgetting that all of this too is what life is about. Change is the only thing certain — so goes the saying. With change, opportunities.
When the sun shines and Adam smiles, there seem to be so many more of them.
Adam and I have birthdays fairly close together. It’s my birthday today and Adam and I spent the entire weekend celebrating.
Our first excursion was toCanada Blooms at Toronto’s Exhibition Place. We spent about an hour-and-a-half strolling and looking at garden constructions (which I love), and Adam seemed to enjoy it too. He loved the many water features and water falls and in particular, a tunnel made out of leaves in a children’s garden where little fairies were tucked into trees and other flora. Little surprises abounded like an Alice in Wonderland world — wine glasses embedded in wood logs, a tunnel made out of leaves, and other neat objects for the imagination. In our new garden at our new house, I’ve tucked away similar items for Adam to find — mostly animal and Buddhas. I think I may be hiding a few more things to make it more magical. There’s nothing better than watching a child intrigued and delighted by such things — simpler things that we can create rather than those we must buy.
As you can see from the photos above, this was the first time that Adam ever allowed his face to be painted. He chose the “red lady-bug,” he said specifically. “Red.” He smiled and tilted his head a little at the tickling feeling of the paint brush against his skin. I am thinking of how crowded it was and the little guy enshrouded by taller people. I specifically remember that feeling as a child — in malls and other crowded places where adults felt like a dense jungle above and around me that eventually I’d feel overheated and get a headache. While we left before it became too much for him, I’d say an hour-and-a-half was a pretty good chunk of time!
The following day we spent out for lunch and a walk, and finding ingredients for the recipe of (red) tomato soup he wanted to cook (he is reading a lot of cookbooks). So we made a list and went to the grocery store where I asked Adam to push the cart, and find each item on the list. He really enjoyed this even though he only spent about ten minutes with me in the kitchen because, frankly, I do not want Adam chopping onions and garlic for the handling of the kitchen knife. Instead, he got to stir the pot. Just the smile on his face from being able to do his own shopping was enough gift for me. Adam so wants to do many things and his pleasures are mine.
Then, we went to Riverdale Farm to see the animals. The Clydesdale horse came to see us and the cow’s face was so close Adam was enthralled. He watched it chew its cud for a long time and like watching him shop for groceries, I enjoyed watching him watch the cow. He reached out his little hand and I lifted him so he could pet the cow along its nose. He was also interested in the sheep. I reminded him of the sheep inBabe – the movie he watched almost every day when he was a toddler and wonder if he was thinking about them too. We walked around Riverdale and then came home to make dinner for my folks.
So it has been a simple birthday for me, full of earthly delights. And as for the ladybugs, let me quote Francis in Under the Tuscan Sun — may there be “lots and lots of ladybugs” in the coming year. I think I’ve shown this clip someplace else before, but this has been my movie of 2009:
I was taking a forced break this week. I contracted that nasty stomach flu last Friday and today is the first day I’m feeling better. It’ll knock you down off your feet if you get it.
I realized too that it was a forced break and how I push myself too hard. I had been moving and fixing this new house for a year, I’m still doing it, I tried (with success) to transition Adam through a difficult time moving homes and then I suppose I should not be surprised that I got that nasty flu bug.
I got to thinking about how we push through things and quality of life. I’m a real doer by nature and compulsive at that. I often put way too much on my plate until I realize I simply cannot complete all the things I set out for myself. I don’t like to call it ‘setting myself up for failure,’ but rather just that I still need to learn that compulsive doing is perhaps a way to avoid other things (which granted, I’ve been dealing with), and it’s just time to slow down and catch my breath.
We do it with our children too. We can throw so many things at them and change the course too soon. We doubt their schooling, their programs and we throw, oftentimes, too much at them to see “what will work” (to make them “better” or “progress”). Despite my intellectual knowing that this can create stress on children as well as adults and stress hinders any kind of progress, I’ll admit that I have the same feelings as many other parents out there. Thankfully, for the most part with Adam, I’ve stayed the course, that is, once we found the course that seemed right for him.
Adam and I are due for a break soon — to enjoy our new house, take leisurely walks in our new neighbourhood — to learn the routes that Adam enjoys creating to soothe himself and feel at home. We need to play a board game and some more Go Fish. We were doing nicely with that game. I helped Adam turn-take by using visual cues and the joy of this is, we are enjoying each other’s company in playing it.
I am feeling better now and Adam has been smiling a lot in his new home. One of my strategies was to bring Adam home early from school with his aide and surround him with familiar people, and this helped a great deal. It took three weeks before I really saw him begin to settle in. As you may remember from previous posts, he was having severe spasms that made us very worried about him, not to mention extreme sleep difficulties. Anxiety will create sleep difficulties in anyone, not just autistic people. In order to ease his anxiety, I’ve followed Adam’s lead and have tried to stay on top of when he is about to become over-aroused so I can redirect him to something less upsetting. Adam is pretty good at trying to do all of this for himself, but there are simply times, as he is still a child remember, that he needs some guidance and support. It strikes me as odd that we expect our autistic children to “behave better,” and do not consider the stressors in their lives with more deliberation and compassion. It was when I wrote down many notes about Adam’s behaviour during this transition, for there came a point that I didn’t know what else to do, that I not only came to see the patterns clearly, but I, as his parent, could settle down myself. My worries and expectations about Adam may have been so high, that I forgot to slow down for him too. I thought I had charted a pretty good course, but it wasn’t exactly what he had needed. It was at this point I decided to bring him home early from school for two weeks and enable him to have fun in his new home. It was also at this point that we began to see positive results.
Transitions are one thing — they are very difficult for all children, autistic people and especially for Adam. During these times, we have to take more time out of our “regular” routines to accommodate our autistic children. Sometimes we think we are doing everything we can and we can become frustrated with our efforts as parents. When we take the time to look carefully, it becomes easier to alter the accommodation to meet the person’s needs.
So we’ve come this far, and indeed I’ve learned another valuable lesson. Now….BREAK TIME! (Or maybe some Go Fish).
It’s not all that easy to read in this day and age of watching our words regarding “struggle” and “fight,” so overused and sensationalized in the media to the detriment of autistic individuals. She uses these words more often although the tone of acceptance runs throughout, and this is a point I like to make often about autism acceptance: it doesn’t come without facing our inner doubts. If it were, it would lack real meaning and substance. Acceptance is something we must earn by facing them.
Adam spends some weekends with his father. This particular weekend, I caught the the stomach flu. Alone and sick (thus feeling particularly so…it always happens when we’re not feeling well), I yearned to speak Adam more often and to ask how his day went. I was yearning for connection and I was also feeling guilty of not being able to take Adam back on Sunday night, when I would typically after a full weekend with his dad. I wished to explain this to him, but Adam does not love sticking the telephone to his ear. In fact, he is exceptionally averse to it. My mother says Adam lives in the right era with all the technology that can help him. I’m not certain it is as good as we yet want it to be, but one thing’s for sure — thank goodness for Skype.
Skype is a recent life-saver. Adam’s dad and I have begun using it often and Adam holds his attention longer than using a telephone, as the visual is easier for him to understand. I can see him and he can see me and I feel a sense of huge relief. Then I wondered if Adam did too as he had to stay two extra nights with his dad because I did not want him to catch this outrageous flu. He loves his dad, but I wondered if he had natural questions about what was happening to his routine, and his mommy.
It was in Eustacia’s introduction that I tried to seek solace from this weekend. She said, “I’ve learned how the parents of autistic children suffer from a loss of their own sense of self. We all know that a baby needs a mother to know she’s a baby, but, equally true, a mother needs a baby to know she’s a mother.”
My friends and family, even my ex, all assure me that Adam knows I’m his mother during my more vulnerable moments, like this past weekend. I asked his aide today to help him understand that Adam would have to wait one more day to see mommy — as I was hoping he could come home, but I am still too ill (do you understand how worried I was about this yet?). Adam texted me the following, I’m fairly sure, with a few reminders from his aide:
hi mommy
i like mommy
i like dinosaurs
mommy feeling sick. Feel happy. Feel better
i had chocolate after lunch
bye mommy
love you
Adam
I’ll take it. Yet I wondered today if Adam really missed me. It’s a natural wonder, I think. Even parents of neurotypical children might wonder the same when their children are with another parent, or with friends. We too need to receive love. We need these expressions of love that we have become so used to.
Later on Skype this afternoon and evening, I had a virtual “dinner” with Adam, thanks to his dad who put the camera straight on him. After he became upset later in the evening, his dad put him in front of the camera. When he saw me, he calmed right down and smiled again. I spoke to him softly in my mother-voice, reminding him that I will see him again tomorrow. Again another smile; crying abated. That is the mother’s reward — her ability to calm her child. I completely understand the angst mothers feel when they do not feel they can appease their child’s pain or distress because I too have been through that.
So I am elated for it’s what I get — not yet the long drawn out conversations about what is happening, what may be confusing him, what he is excited about. Yet I think I can decipher it enough. We are communicating. Indeed, I need to remind myself of this in such times when I think of Adam as a person and his future, and my future as Adam’s mother.
“Think of me as your future,” says Eustacia. “I am where you will be many years from now, when you know how it all played out, when ‘what will be’ has turned into ‘what was,’ and you will have to come to terms with it.
Perhaps not in the way you thought you would, but you’ll no longer feel trapped in a morass of angst and guilt. You will have resolved your child’s future and your own. You’ll know you’ve given full measure, and the measure you’re given has never been pointless.
I offer you my story as a promise of that: an overall insight to carry with you as a talisman. And I promise that, in the future, to your surprise, your dreams will have changed and changed you.
I know that’s not what you want.
What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will. There was no magic; there was just doing the best I could. That’s the point; that’s the talisman.”
I’ve understood my son. Maybe he understands me better than I can know in the obvious, typical way. For certain, love goes deeper.
We are confronted with new challenges in our new home. Adam seemed to transition well at first, but now it is difficult again. As mentioned in the previous post, we do not know if Adam’s spasms are seizures or are spurned by tumultuous transition. On my end, all I want to do is get back on track with Adam. I for certain want my sleep as I function horribly without it. I want him to get over the hump as smoothly as possible until he can have his tests and/or become comfortable in his new home and situation.
But there’s another problem.
It could be me.
I need to re-learn my ABC’s. Remember those: Antecedent, Behaviour, Consequence? We put an autistic child under our neurotypical microscope (as if that doesn’t cause distress), and evaluate the antecedent (or cause) of a behaviour so that we can seek to change (or eliminate) it. The Consequence in behavioural-speak is what happens after the behaviour. I’m not saying that these tools are not useful to us. They can be if we learn how to assist autistic children cope. I’m not a fan of eliminating behaviour. But there’s another side to this story.
When I worry I am studying Adam. I watch for every little sign. Then I realize that I’m not watching myself. How am I feeling? How has my anxiety triggered a course of events? Adam just wants to explore, and yes, he cannot sleep like most autistic people who, as they become adults, learn to cope on very little. In his new home, Adam is very “disorganized” in his body (for those unfamiliar with this language, it means that Adam is moving his body in unfamiliar ways or hyperactive ways and it can appear distressing), and I still do not know for sure if it’s medical.
Yet, I also am thinking he is learning about every nook and cranny of the house as he used to memorize routes on road trips from school to home or from his old house to the park. While he didn’t get upset if we changed the route, he certainly memorized it. I’m thinking of Dawn Prince Hughes, author (and new friend of mine since I met her in Toronto a couple of years ago — little did she know that I was a HUGE fan of her book beforehand) of Songs of A Gorilla Nation: My Journey Through Autism and the excerpt on herself as a child running around in the same circle in her house. Experiencing this first hand, it’s exhausting for a parent who wants their child to “behave” or settle. Then I have to think again.
“The way I said ‘siiiilllverrr doooollllaaarrr’ was only the start of a profound pattern I had throughout childhood saying words and phrases in peculiar, experimental ways and having a complete fascination for words. When I was young, my parents and I often stayed at my mother’s new house, and my favorite uncle lived there also. A hallway ran around the perimeter of the house, past the dining room, the bedrooms, the bathroom, the front door, and through the living room back to the dining room, in a big circle. My favorite game (to the exclusion of all others) was to wait in the dining room for the adults to come up with a word — the more difficult the better — and then I would speed off down the hallway, in the same direction every time, either on my tricycle or on foot, repeating the word over and over.” (pp. 17-18).
Hughes describes then running to each of the rooms saying the word “where the word would absorb the comfort of my grandparent’s bed, their clothing, the beauty of the vanity table, and the smell of cedar drawers…” (p. 18)
Not only have I found Adam enclosed in drawers, but under the bed, and in the deep dark crawl space in our new basement. It takes a lot of effort for me to stay awake and keep an eye on him, as his safety always comes first. His body jerks, he lays on his back and holds his legs. He opens every cupboard, closet and drawer and is still absorbing them — and maybe he can do this better when he can enter them. Save for the things that he knows — books, his computer that still has the same “Alligator King” from Sesame Street on it, and a cupboard full of crackers and goodies he now knows is his own, he is still disorganized here but is working so hard himself on trying to get organized and calm. Indeed, my boy is making gargantuan efforts.
To this Hughes writes, “I also wanted to keep as many of my own accoutrements as possible the same. This meant that I did not want a new toothbrush, new clothes, new shoes…When I went shopping for clothes with my mother [Hughes describes being afraid of mannequins]…My strategy for survival was to hide inside the clothing racks…the lack of light would calm me down. Hiding was yet another thing that later connected me to my gorilla family — when they went behind the hills to sit or seek out the little caves in the underbrush or rock to be by themselves, I would understand.” (p.21). Similarly, Adam has gone to the books that were the same from his old house. He is not interested yet in new things.
Adam’s grandparents have been around a lot to support him. I believe his grandparents are two of his favorite people (and most consistent). Again this relates so closely to Hughes: “When I was young I stayed with my grandparents on the weekends, and those were among my favorite times. I did feel safe there.” (pp. 21-22). Ask my parents and they’ll likely say that their condo is his “turf.” They have been helpful to Adam and I during this time.
Adam craves lemons during this year of transition. To this, Hughes writes, “I craved salt and would eat it straight from the shaker. I craved burnt matchheads and would suck on them whenever I could find them. I craved Alka Seltzer for its taste and feel….A sound like the thrum of a tumbler full of milkshake when is was tapped [Adam does this all the time] by a spoon or the Westminster chime of the clock would fill me with rapture.”
So I give Adam his lemons. Right now, I’ll buy him a bucketfull, although other people will tell him to “stop eating lemons,” or, “stop doing that.” Sure, I worry about his teeth, or of Adam’s safety in potentially dangerous situations. I’m not saying that we have to allow our kids to do everything, but I have to let him do more than usual and I have to change my behaviour to accommodate it right now, for this is an exceptional situation. I’m always trying to stay one step ahead of Adam to figure out how he can explore safely.
“Most autistic people need order and ritual and will find ways to make order where they feel chaos. So much stimulation streams in, rushing into one’s body without ever being processed: the filters that other people have simply aren’t there. Swimming through the din of the fractured and the unexpected, one feels as if one were drowning in an ocean without predictability, without markers, without a shore. It is like being blinded in the brightness of a keener sight. Autistic people will instinctively reach for order and symmetry; they arrange the spoons on the table, they line up matchsticks, or they rock back and forth, cutting a deluge of stimulation into smaller bits with repetition of their bodies’ movements.” (p. 25).
This is quite an overwhelming statement for me on how Adam may be experiencing his new life situation. It is quite a disability and a sensory overload.
My point is, Adam is adapting as naturally as he can in a home that is entirely new to him. He will thrust his body upside down, will spin, will seek those dark tight spaces and not be able to sleep in his new bed precisely because he has not yet created his order. But he is doing what he needs to do. I, on the other hand, despite knowing this, am having difficulties of my own in managing it. Watching my son in distress distresses me. While this may be natural for Adam, it was re-reading some of Dawn’s excerpts this morning that helped me realize what I’ve learned in the past, but am now experiencing first-hand in a larger way.
I realize that I too am adjusting to my new surroundings as I listen to the house and figure out how I’m supposed to live in it. Things break down and I get frustrated because I am not yet calm and oriented, and this is difficult on both Adam and I. While I feel guilty much of the time that my own anxiety is not helping Adam, I know too that we are not in control of everything that happens to us. Life happens. We are dealing with it. Like Adam, I am human.
So I was thinking about going back to the ABC’s and I thought of using it as a pun on behavioural-speak because what most of us want to try and do is “fix” the situation or behaviour. Today, I am reminding myself that this needs exploration and time — we’ve only been in our new house for a week! Not only does the alphabet, which Adam loves, stay constant in a world that is always changing, but re-reading Dawn’s book has helped me realize what tumultuous change feels like to an autistic child. It may require more effort on my part now to help him adapt by creating safe ways for him to do so. Adam will reach for his ABC books that always stay the same and he’s doing his part, and I am having this feeling he will eventually make lemonade out of lemons.
We’ve had some encouraging messages lately, haven’t we? The HBO production of Temple Grandin played by Claire Danes shows that while (and many of us have read Temple’s books already) the world caused her anxiety, she could “see details other people are blind to,” she says. “I have a gift.”
Certainly the idea of giftedness, which happens in non autistic and autistic persons, can be yet another stereotype in assessing autistic people. Perception, on the other hand, is something to think about deeply.
When Adam was very young, we had these water blocks that were dyed different colours. Adam was mesmerized by these blocks watching the water swish and swoosh. Then all of a sudden, my wobbly toddler took them up to the window and peered through them. Ah, I thought. If only we could all stare at the world through coloured water blocks. How beautiful it would be. I know was also in part a cooing mother of a young autistic boy, so anything he did like this made me hyper-aware. But still.
When he got his “legs” and we began walking around the neighbourhood, Adam memorized his routes. To this day, if we take him to his old house and walk from there or the park nearby, he will remember how to get to that park or get back through the old “secret pathway” to the old house — which has even since been torn down and rebuilt! Remember, that was his two-three year old brain. In April, he will be eight-years-old.
Coming out soon will be a new version of Lewis Carroll’s Alice in Wonderland, directed by Tim Burton. Many people suspect that Carrol was himself autistic with his different perceptual abilities. He is often cited as a person who “suffered” from micropsia and macropsia, which is a neurological condition that changes the way the brain perceives the size of objects. When Alice falls down that rabbit hole, we get a look into Carroll’s mind.
Scientific American Mind published Extraordinary Perception by Wray Herbert this month. It discusses how psychologists at University College London “think that it might be a mistake to consider [autistic] distractability as simply a deficit. To the contrary, Anna Remington and John Swettenham and their colleagues speculate that people with ASD might have greater than normal capacity for perception, so that what appears as irrelevant distraction is really a cognitive bonus.” I added autistic to distractability as many therapies for autism as well as medications are geared at lessening it.
The test, the article shows, was for subjects to “rapidly determine if the letters N or X were present in the ring” on a computer screen. Participants had to then “hit the corresponding key on the keyboard. Some of the circles — those with more letters — were more difficult to process than others. There were also other letters floating outside the circle, but the subjects were specifically instructed to ignore those letters. Those floating letters were the laboratory equivalent of an irrelevant distraction in the real world.” In measuring perceptual capacity, researchers saw that “everyone was slower at the task when the ring contained more letters. The researchers were also measuring distractibility. When a letter outside the ring was one of the target letters (N or X), the subjects often took a longer time finding the N or X in the ring — indicating they were distracted by the presence of a target letter in the location that they were supposed to ignore.”
The researchers reasoned “that as long as the subjects’ total perceptual capacity was not exhausted, they would also process the irrelevant, distracting letters within their visual field. Once they had surpassed their perceptual capacity — once the ring of letters was sufficiently complex — irrelevant processing would stop [bold mine]. So if ASD subjects in fact have greater processing capacity, then they should process more distracting information even as the main task becomes increasingly complex.”
In conclusion, “although there was no difference among subjects in either reaction time or accuracy on the main task, those with ASD processed the irrelevant letters while solving much more complex problems...Put another way, they weren’t ignoring the main task, nor were they distracted away from it. Instead they were completing their work and moving on, using their untapped capacity” [bold mine].
This article also concludes that while this is a benefit, it also does have “real-life consequences.” They begin and end the article citing Tim Page, an author with Aspergers from his book, Parallel Play: Growing Up With Undiagnosed Asperger’s. Page recounts his time in school who failed an essay about his field trip which was quite detailed in terms of his way of perceiving it, and how he was scolded for writing in that particular way. “I had noticed the wrong things,” he writes.
As a parent of an autistic child who has difficulties with verbal communication, I have to ask the question: “whose problem is this anyway?” Certainly I have been dealing with issues, at least issues for me as Adam cannot comment here yet, so I am fully aware that I need to be fair. He has very real sensory and perceptual differences, so I set up a basement full of equipment for him to self-soothe. He has even learned to “self-regulate” by going to read his own books, and I never had to teach him that. His body will completely quiet as he flips through pages of encyclopedias, dictionaries, cookbooks, among many other subjects. He may even appear to layperson as not really paying attention and just flipping pages, but I know it’s more than that. His body-jerking almost always stops, which is how I conclude that he is soothed by his books. I am imagining him looking at those books over and over again, and what he may be gleaning from them. Still, when it comes to getting the responses WE need, he using a “special” reading program at school. Indeed it is really helping with his expressive reading ability, and maybe even with his vocabulary. So I need to let him do both. He needs to learn to respond in a world that doesn’t yet understand the way he learns. He also needs to flip through pages and pages on his own. I can sit beside him sometimes also and talk about the books he is reading. We can type about what he is reading, we can draw stories and make more conclusions or assumptions about what he is reading. When we do things together calmly, we are having lots of fun.
When we teach him a new communication device, it may appear to the person who is teaching that Adam is not focused enough — indeed he appears to be “highly distracted.” On an AAC device (we are still awaiting one from a service-provider here in Toronto) his finger will go to the right picture, letter, or answer, and then he will quickly go to another one to check out what it will do. A keyguard helps him direct his finger more quickly to the correct response. He may have trouble finishing sentences (when he types) and then be reminded to “stay on task.” This is in large part what Facilitated Communication attempts to assist with if done correctly — to remind and assist with the focus. To a person who cannot detect that Adam was about to give the “right” answer (or rather the answer that was requested of him), he would receive a failing grade. Adam is very young and I believe he is not given the benefit of the doubt enough, although his team members are good with this.
It is only fair to say that we do not KNOW everything he knows. We do not fully understand how he takes all this knowledge in and we are the ones that deem his versions of knowledge as irrelevant. We have not developed sufficient ways to measure his responses or his way of learning and seeing, except for the ways we measure responses and knowledge from people who are not autistic. This brings me back to the old ABA adage, “if we can measure it, we can deal with it.” Unfortunately, the way we have historically dealt with autism is by eliminating the behaviours and learning patterns that are essential to an autistic person’s existence. Perhaps continuing to fund this research more heavily is important because as we understand how autistic people learn, we can not only develop better learning tools, but come to better appreciate our children.
Trying to understand this is a first step. As Adam’s parent, I see many of the so-called “issues” being mine, and yes, I become just as frustrated as many other parents out there. It’s really hard to see Adam in distress and it’s even harder to always be guessing what may be causing anxiety or body-jerking (Lack of calcium? Trouble at school? New self-awareness of difference? Trouble with transitioning from task to task? Lack of sleep? Seizures? A very long winter? Lack of exercise? Another neurological issue?…The guess work list is too long). Since Adam appears to be in discomfort since late last fall, I am really working hard at figuring this out (wait-lists are long here in Toronto). Sleep issues, anxiety issues — I know when I have a level head, there is more that I can do for him to ease the situation. We need science now to figure out many of our questions.
Sometimes it feels that makeshift solutions only lead to more issues. Sure, we all want things to be a little easier, but Adam requires more consideration in order to achieve that balance between helping him through discomfort as well as accommodating his needs. As I have been through a difficult year, like many of you out there, I completely understand the reasoning, but I have to keep a level head and look at what Adam has also gone through with a “broken” family. I have needed my sleep, but if Adam cannot, I have to find safe ways of letting him stay up until his body will sleep naturally. I know what I’m saying isn’t easy and there are still days I will resort to the Melatonin, even though, because of the guesswork involved, it pains me to do so. Yet I also know it’s important to stop and slow down and think about how Adam feels and perceives. When I do, everything seems a little easier. As a parent, I can even become proud of myself (it’s important) that I’ve not only managed well, but have helped Adam out too. We are still on that path to finding out if we can help Adam, but I am always wondering excessively about how I perceive the “problem.”
I’m interested in what people in science think about this Perception study. I think we have to spend a lot more time imagining what it feels like to be in Wonderland.
——-
Excerpts from:
“Extraordinary Perception” by Wray Herbert in March/April 2010 issue of Scientific American Mind, pp. 68-69.
Further Reading:
Selective Attention and Perceptual Load in Autism Spectrum Disorder, Anna Remington, John Swettenham, Ruth Campbell and Mike Coleman in Psychological Science (in press). Published online October 14, 2009. www3.interscience.wiley.com
I’m clicking my heels this morning. Adam is so happy in his new home that it seems he likes it better than his old one! So all that worry has turned into joy, joy, joy.
This isn’t much of a post except that I had this song in my head this morning and I dedicate it to my Adam:
I’m not talking about relationships. I’m talking about Adam’s third night at his new home. After letting him explore, be tense, be happy and then settle, he spent his third night in his own bed.
The past two days when I’ve picked Adam up from school he has been running into my arms with a huge grin on his face. I have to admit that his hugs and grins are like Valium — the moment he does that my entire body relaxes. As his mother, I am happy when Adam is happy. Adam is happy when I am happy.
One thing is for sure as I watched his face searching mine this morning and on his way out the door to school is that for Adam, I am home. This is home because I am here. For all the worrying I’ve been doing, it dawns that I am the most important person in Adam’s life. I am the most constant, the most present, although, of course he has many people who also love and support him.
Below is a little snapshot of Adam when he came home from school as I let him relax. It doesn’t show the exuberance that came afterward — and the searching for mommy in order that he could snuggle in the crook of my arm for me to read him his favorite books (Little Ms. Shy and Mr. Quiet, no less). As I watch what Adam does and how he does it; as I pay attention to the books he brings me, he is telling me a whole lot. I say this as I am also skeptically reading about a cuddle drug for autism (Adam is the best cuddler and most affectionate child). It can be frustrating when I am worried about Adam and he cannot communicate everything that’s on his mind. Considering all the issues with autism and communication, it is those moments when I step back and pay attention that I can really appreciate Adam and the many things he has to say. Thank goodness for autistic behaviours for they are telling me so much! Adam is telling me how much he needs me and my support. He is telling me how much he loves me!
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
