Estée KlarThe Joy of Autism

We hate it when we see our children get sick. When we watch them suffer, all we say is that we wish we could suffer for them. Honestly, watching Adam be ill is one of the hardest things.  Yet I know what to do. I know how to take care of him. As a single mom who becomes ill herself I am more at a loss.

After that wonderful weekend in New York with my fellow autism bloggers, I seemed to be functioning fine. Then on Monday evening,  all of a sudden, I began to shiver uncontrollably. In the middle of one of Toronto’s hottest summers, I began layering myself with winter socks, sweaters  and six blankets. This began to happen when Adam came home from camp and from time spent with his dad and I hadn’t seen Adam for a few days!  I had to pull myself together long enough to get food on the table, and ready him for bed. I could hardly read the books and play the games I had planned for his homecoming. Adam’s face was beaming at seeing me and I felt like I was cheating him, even though I knew it couldn’t be helped.

After I got him to sleep, I went to my own bed, layering myself with more blankets and a heating pad, knowing full well I must have a raging fever.  Then it suddenly began to hurt when I was breathing in on my right side. I knew I was getting a kidney infection after having one when I was a kid. I have never in my life shivered like that and I knew I should probably go to the E.R. Yet with Adam sleeping, I had to consider if I could make it through the night until I could see my doctor in the morning. The shivering was so bad my muscles began to hurt.  I had to start considering my options.

I am an only child. I don’t have siblings to call on for assistance. I have friends who I would call if it really was my last option, as I’m the type who doesn’t like to ask for help unless it’s critical. Instead, I have parents — the loving grandparents of Adam who take him on long walks in our beloved city or some forest path in the country, for subway rides and to places I’m certain I’ve never been.  As long as they are here, they are always  ready to help Adam and I, always on call, and this is a gift I don’t take for granted. They were eager to come over but I waited a little bit until I could wait no more (because I am stubborn). Dad took me to the E.R. while my mother stayed at my home for Adam. Yet I wonder how I would have gotten to the hospital  if I did not have anyone to call in the night for help with Adam. If I was single without children, I would have just called a cab and made it to the hospital myself. It’s not like that when we have children. With autistic children, if this were the daytime, I would also need extra assistance because Adam would have difficulty playing quietly in a room for hours and hours.

It got me thinking about single parenthood and how we all need support. As single aut-moms or dads, we need extra support in times like these precisely because our autistic children need extra assistance as well. It got me thinking about our interdependence and community and how we need to be on call for others as much as we need others on call for us. I don’t know if it’s an only-child thing, but it’s difficult for me to ask for help.  I also wonder in all of this, if  Individualism may have gone too far, and it’s something that we all know as autistic people and parents of autstic people that we cannot afford.  No wo/man is an island, although we seem to think that we should be.

There are writings out there about how we can seek extra supports. Books like More Than A Mom, for parents with special needs children. There are some good resources out there that can help us with ideas. It’s definitely important to create a back-up plan as single parents, for it really does take a  community to raise a child, and we need our support systems organized and ready. In the meantime, I’ve not only learned another lesson in my new role as single parent, but I am humbled, if not grateful, that there are people willing to lend a helping hand.

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“Before you break something apart, it helps to know how it hangs together.”

 – a quote from SEED magazine regarding art and science and the contributions art can make before distilling the neurological nature of being human.

It helps to know what makes a marriage or relationship hang together. The manner in which we build a union between two people can be pinpointed from the moment it begins. Over time, I’ve come to believe that strong foundations for a relationship are built on honesty, sharing, trust, communication, respect, personal character and commitment. These attributes become ever-more important when we decide to start a family. I might suggest, as a woman with some experience, that a serious review of some of these attributes in ourselves as well our partners, and an agreement of some kind, is of prime importance before starting a family.

Instead we get swept up, probably because most of us are young, in the idea of what a marriage should be instead of looking at the practicalities of construction. Naively, we come to believe that having a baby is romantic and naturally, all we want to do is proliferate the romance. In an age where we are encouraged, and should to some degree, go with the flow, we may have swung too far. Perhaps we do not consider our partners in construction carefully enough because it seems too “business-like.” Yet real life seems to be that fine balance between the two. As the saying goes, all we have at the end are the relationships we’ve built, and might I add, maintained. In a society that values Individualism, it seems to me that many of us have forgotten that it takes a community to not only raise a child, but to also sustain us as adults, so we better be paying attention to how and what we build. As Thoreau said, “build [those] castles in the sky…” but it helps to place the foundations under them. It behooves us to try our best to ensure they are strong.

Let me clarify here that I am a woman writing in retrospect as I am now a single mother of an autistic child. I’ve seen that when relationships fall apart, we blame it on other things. No matter what, external factors will impact a life and a marriage — illness, disability, death and other unfortunate occurrences. We hear it in the marriage vows (for better or for worse, in sickness and in health), yet it seems few of us care to consider the meaning of those words which, in my view, can apply to our friendships and other types of partnerships. I mean, no one can really scoff at those marriage vows even if one doesn’t believe in the institution. We all want someone to see us for who we are, and to love us until the end. Yet, sometimes the two people who came together with the best of intentions cannot endure the stress and do not function well as a team when challenged. In an era of extreme autism fascination and fear we can be ultimately challenged. As such, it is also assumed, and often written, that autism is a main cause of divorce. The unknowing, innocent autistic child is then targeted by society as a result, and it is yet one more reason added to an exhaustive list of why we must cure and change the autistic child as quickly as possible. Instead of considering that all children are a test — that in fact, all of life is one big test — we yet again blame the autism.

I have always found the idea of blaming the autistic child for the deterioration of marriage as something unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might even in some small way be true. There can be more stress because our children have atypical needs that are not easily accommodated in our communities. In North America, we are still in the process of legislating what the rights of disabled (including autistic) people must be. We have acknowledged that the rights of autistic people are about thirty years behind of how we regard and grant rights to people with other disabilities. In other words, there is still a journey ahead.

As a parent also living in an age when governments do not understand autism and the accommodations autistic people need to contribute as autistic people, there is more stress when we have to fight to get our kids into schools, obtain financial support, acquire respite help, augmentative communication devices, social skills and vocational training and later, appropriate housing accommodations, access to community colleges and universities with aides and supports that allow our adult children to continue to learn and contribute. By default, we’ve become activists, advocates by no choice of our own. Daily, in some way shape or form, we always seem to be negotiating prejudice in order to get our children and our families what they need. Yes, it can be exhausting in the beginning. I believe all parents need to pace themselves for like life, the journey is long.

I’ve heard that some spouses complain about mothers (let me clarify that the bulk of writings on the topic seem to address the mothers) who take on such a role. “If only the child was “normal,” then the mother would be able to attend to her husband more often. I’ve also heard single moms of more than one autistic child claim that their entire identities are entwined in autism, and as you can see from the laundry list above, it is with good reason. Further, some families that are mixed with typical and autistic children also seem to experience more stress because the autistic child is held up against the typical one and there might be some unhealthy comparisons. As a mother of only one child, I have to consider that some of my stress may be alleviated by the fact that I know of no other way to live. I have no other child to compare mine against. I consider this one of my many blessings.

It might be true that some husbands (and this can also apply to mothers, I do not wish to target husbands, so let me clarify this here even if I do state either “fathers” or “mothers”) do not care to participate in the intensive initial learning curve of raising an autistic child. It is true that some partners bail and leave the brunt of the work to the mother. It is true that in the first years after a diagnosis, and in our new age of autism fascination and fear, autism required a lot of reading, research and self-enquiry. Yet, life evolves, our children mature and we move beyond that “crisis” phase. One can only hope that our partners will hang on until we get there. Still, blaming the mother for the failed marriage is an old idea — we’re either as cold-as-ice- Bettelheim- Refrigerator-Mothers or we are terrible wives. Misogynistic ideas flagellate us and the ideas run so deep they are tough to beat. While there are single mothers truly struggling and are in need of respite, access to services and financial support, I also suggest that these are the caregivers who should be at the top of the list for such support. For after all, it is true that if a mother does not explore herself and her own needs, she will not be able to give herself to her family.

I also think there are all kinds of mothers, those with special needs or typical children. Some are the ones always carpooling, always talking about their children at social functions — forgive me please if you are one of them for it’s your right, but it’s just not my style. Although I spoke a lot about autism in the early years as I tried to figure it out for myself, and I often write about my son on my blog, I do not always wish to talk about him or about autism and I never wanted a bucket full of kids. In short, I’ve seen more women of typical children get so caught up in their motherhood roles that I find it so ironic that mothers of autistic children get blamed for failed marriages because we get so involved in our “autistic” children’s lives! Indirectly of course, the autism, or autistic child is also blamed. In all of my years I’ve tried to always enjoy my passions, even if I’ve had to sometimes put them on hold at various points in my life. Even while my autistic child is a huge source of happiness for me, I recognize that in order to be a good mother, I have to explore and live my own life. I believe that by being my non-super-mom (hence the lack of carpooling) very basic self, I am setting a good example for my son. Mothers of autistic children are also professors and other professionals with successful partnerships and marriages and others are struggling to care for the children on their own while trying to make ends meet. Like everyone, we are also a diverse community. No matter where we are at, finding the balance is an art we seem to always be working at.

A new study debunks the incorrect divorce rate and some of the assumptions that we have mustered that belong to the myth. Dr. Brian Freedman of the Kennedy Krieger Institute found that a child’s autism “had no effect on the family structure.” In fact, he found that 64 per cent of children with autism belong to a family with two married biological or adoptive parents compared to 65 per cent of children who do not have ASD. Freedman’s study acknowledges that parenting an autistic child may be more stressful and it may put pressure on the marriage, which he found in past studies. As I looked back to reference this, I found one executed in the Journal of Autism and Developmental Disorders (Vol. 19, No. 1, 1989): Brief Report: Psychological Effects of Parenting Stress on Parents of Autistic Children (Wolf, Noh, Fisman, Speechly). What was noteworthy to me in this study was an assumption that parents felt that their own personal goals were delayed or forfeited (Kohut, 1966), disappointments with delayed developmental milestones (Howard, 1978), worry regarding future self-sufficiency (Wing, 1985; Wolf & Goldberg, 1986), and the unpredictable, ambiguous nature of autism as important sources of life stress that impose physical and emotional strains on parents exceeding levels experienced by parents of normal children (Bristol & Schopler, 1984; Korn, Chess, & Fernandez, 1978). Freedman seems to have used these assumptions when citing that parents of autistic children suffer a greater amount of stress than parents of children with Down Syndrome or typical children; that mothers report more depression and fathers deal with stress by distancing themselves and becoming less involved with the family. (Source: Kennedy Krieger Institute).

Yet, in an analysis of the National Survey of Children’s Health, data showed that other factors can contribute to divorce, “such has having a child with particularly challenging behaviors with and without autism [bold mine]. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point.” Freedman wishes to conduct more longitudinal studies to find out how relationships can survive such stressors and what factors may enable the successful marriage. Alison Singer, founder of The Autism Science Foundation agrees that it would be helpful to find the “net stress reducers,” for families, noting also that the 80% divorce-rate myth may have added to our stress as parents and marriage partners.

It might help to add here that Canadian researcher Lonnie Zwaigenbaum in his paper A Qualitative Investigation of Changes in the Belief Systems of Families of Children With Autism or Down Syndrome (Child: Care, Health and Development, 2006,32: 353-369) concluded that families with autistic and Down syndrome children resulted in a reconstruction of values, expectations and actually added to a sense of overall happiness and joy. His team noted that most families believed that their children improved their quality of life. I will concur. Having an autistic child, even with the challenges, has brought me down to earth and made me appreciate many more aspects and people that are currently in my life. My son Adam has been my most profound teacher in helping me see not only the realities of life, but in living with them to the best possible degree.

Still, I thought it really important to discover why so many people believe that families with autistic children in them, are subject to higher divorce rates. They seem to be based in our beliefs and fears, whether they are real or not. We are told many negative things when we first hear the word autism and the idea of having a difficult marriage is not a welcome message. As a single parent, I also have to consider what of those negative messages permeate societal thoughts and the potential for future relationships as society (and potential partners within it) believes that life is so hard for us that we do not have time for the pursuit of happiness.

We learned the extraordinary lengths we would have to take to help or “cure” our children — the strain on our financial resources and time — but the future, even with such investments, looked uncertain. When I consider stress, I have to account for some of the images I have had in my own journey, particularly the early ones. Thoughts like: thwarted dreams, a curbed schedule, shiny white hospitals with fluorescent lights, and spare cots (as seen in the neglected institutions of the 1960′s) popped into my head as I lay putting my autistic son to bed, his hair still baby-soft and face so sweet. The images did not fit with my reality, yet, I wondered how these haunted thoughts would effect the way I dealt with my son. Those images collide against the perfect Hollywood glam of serial daters and spouses with their perfectly coiffed children in gleaming black limousines. Let me quickly add that you will find me often blaming Hollywood for our warped self-images.

By taking a serious look at these narratives and images, it is possible to come back down to reality and back away from feelings of doom. Not only do I know my marriage did not dissolve because of my autistic child, but I became interested in the underlying fears that may prohibit some people from believing that future relationships with autistic children are possible. In other words, I think there is a correlation between our idea that autistic families must have higher divorce rates because,

- we believe we suffer more stress because we feel we devote much more time to the autistic child than the neurotypical child, possibly without considering the issues that many typical children have that can also put a strain on marriages and the outcome of all children is uncertain;

- we have automatically concluded without further inquiry into our belief systems, that single parents of autistic children have it tougher and therefore have less time for current or future relationships (as compared to families with typical children);

- and that our historical view of the disabled as asexual non persons is inherited in how we view ourselves as parents and human beings.

The stigma facing the disabled community still lingers. We see a person with real physical or cognitive issues, and a slew of ideas and images cross our minds. I find it helps to always catch myself in these moments of thought and question the immediately. It’s not that most of us really know anything about the disabled person’s life, for many of us have never had a family member or lived with a disability. History continues to pulse through our veins and when we view disabled persons, we think of institutions, hardship and poverty — not the typical attractive traits we think of when exploring sexual relationships.

In autism in particular, we are all too familiar with the head-banging narrative. It was the first thing we envisioned when we heard the word AUTISM. Whether our children were diagnosed at the age of two, three, four or beyond, that very word altered our perspectives of both our children, and our futures. I can think of no image associated with a word more powerful in my lifetime. It takes so much time and self enquiry to unravel the fear and begin to find that balance again. In addition to unraveling and reconstructing our expectations for our children, we need time to discover what we need as parents to live a full and “balanced” life. As a newly single parent who has spent two years thinking hard about this, I can think of nothing as important as taking care of myself and having an important relationship (one can be happy being single — everyone has to find their own path, of course) as not only setting the right example for my autistic child, but for my own happiness which is as much as my right to have as it is my son’s.

It is said that the most successful people in life are the ones who are most adaptable. We are put to the test time and again. We try to build strong foundations and sometimes the end result doesn’t turn out the way we expect. So we keep trying. I’ve given myself some space and time to create a positive atmosphere and peace around myself and my son. This painful time has been precious and with every day comes an awareness that life is neither perfect nor predictable. We cannot predict the outcome of the autistic or the typical child, as much as we would like to think that we can and for that reason I believe things are meant to fall apart so we can rebuild them again with more wisdom and a healthier outlook. I share this story in hopes that we can all exchange our experiences and become a little wiser. Today, we are so fortunate to have the benefit of more autistic adults showing us what they need to contribute to society. We have more positive examples to live by and this by its very nature gives parents more hope. I find it quite relieving to see that there is a sort of “normal” path of autistic development. We are made more aware of the stigma that influences our thinking and can choose to move away from it.

The outcome of divorce and lack of support can fall on single parents with all kinds of children. Yes, autistic children need more support in a world that doesn’t value them as they are. In a recent conference called Autism, Ethics and Society, based in the U.K., the introduction to the sessions read: “Autism is a common [italics mine] neurodevelopmental condition that has dramatically captured attention in the last decade.” While there is much concern about further stigma regarding genetic testing and other scientific discoveries, there is comfort in common-ness, commune and community. Might we be coming to a new decade where autism isn’t as scary and we as parents receive more moral and practical support (like getting into schools), that ease the mental stress that seems to going along with both marriage and single parenting? I definitely believe that along with new people that will come into our lives, this is the new frontier for Adam and myself. At least it’s my castle in the sky. I’m in the process of rebuilding the foundation underneath it.

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A little postscript today: After writing this, I received a note from Adam’s camp counsellors describing him. It says, “Adam brings charm to the senior 24 group. Like the gentle Snorlax Pokeman, he maintains peace with everyone and shows a love for nature. If it was not for him, we would have never found all the golden eggs.” All I can say is….exactly.

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Adam and I are enjoying what Toronto has to offer. A lover of music, I’ve lugged him to the jazz festival and other performances in our great city. We play piano, sing a lot and I’ve been teaching Adam how to dance. He took it upon himself to dance on my feet. It’s something my dad had to teach me when I was a little girl. Adam just did that on his own. With all of this activity, one would imagine that child would sleep well.

Like many autistic folks, however, Adam doesn’t always need a lot of sleep. I, on the other hand, need my seven hours. He’s still so young, I am unable to teach him at this point to do work, go onto the computer and let me get what I need. In many ways, it can be like having an infant, still. If I left him to his own devices at this particular age, he would turn his room into a gymnasium, climbing all the furniture (which thankfully I bolted down).

It might have been the storm last night that woke him, I’ll grant him that. I heard him yelp. As Adam begins to talk more and find his “voice,” he is also becoming much LOUDER. In the middle of my daze at 2:38 this morning he came into my room and said, “Wake up! Let’s talk!”

My eyes groggy, I couldn’t help but smile, even though I wish this came at seven in the morning. “Adam quiet,” I said, not believing that I’d ask my previously non verbal child to be quiet! “It’s time to sleep,” I pleaded. To this he responded with laughter, like the gods.

I could have gotten really frustrated, the way I have in the past sometimes. I just told him to climb into my bed and I let him chatter away as I dozed beside him, knowing that at least a little rest is better than nothing at all. Occasionally I tried to persuade him with a “sleep,” word or two, and he would at least quiet down for a bit.

At six this morning I gave up trying. I turned on Nora Jones, made breakfast and dealt with my fatigue with a dance. Adam, still energetic and happy took his position.

Sleep or no sleep, I know I should not be complaining.

Our morning dance:

This morning’s song, Shoot the Moon, by Nora Jones:

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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.

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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 what it’s worth, I needed that.

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“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.

Home.

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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.

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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 to Canada 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 in Babe – 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:

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Now I know first hand what it’s like to feel dark inside — when my child is disorganized and appears to be in pain and cannot tell me. These are the toughest moments when a parent feels helpless. Also frustrating are schools that claim they are there to support autistic children but will not take “non verbal” autistic children. Believe me, the conditions out there in order to participate in society are just plain ridiculous and prohibitive, so I’m going to make a strong plea to everyone — INCLUSION IS NECESSARY. Stop pretending to be inclusive to autistic children if they have to “talk and walk” at the same time. It’s not autism-friendly! Argh.

Yet when I am feeling depleted, I fight it and I will urge every single one of you to do it too. For each one of us has that power, if we can be aware and monitor what’s happening to us inside. It’s important to remain honest with ourselves and then be able to step back from those feelings that can suck us down.

I reach out for help. I call people. I call Adam’s aides and therapists for help when I’m feeling overwhelmed. This is a good place to start. Always call for help and bring in only those who support you and your child in the manner that you need. Do not bring people in who will put you down, make you feel lower or try to fix your child. The most important thing you and your child need are love and respect.

One thing I know FOR SURE, is that there comes a time in life when we really do have to muster every bit of strength we have and resist the calls of the demons. The echoes of The Autism Everyday video and “wanting to drive over the George Washington bridge is like a siren call and this is why this kind of marketing — the kind that exploits and capitalizes on people’s pain — should be illegal in my opinion. It’s not that I disrespect Allison Tepper Singer for her genuine feelings that might be expressed cautiously in a book or another venue. It’s about how those feelings were exploited for capital gain: make autism desperate enough and we can raise money to cure it. Well, I’ve said it before and I’ll say it again: I believe this kind of marketing (consider type of presentation, method of delivery etc.,) is more harmful to parents than ever.

People shouldn’t have to stifle their feelings — that doesn’t help and can an adverse effect. I’ve read Sylvia Plath’s The Bell Jar and it’s all about wanting to die. Beautiful work exists because of honesty and by sharing honest feelings we do not feel alone. There are expressions of hopelessness everywhere — and some quite well-written in fact. Yet these can be used to empower and can also be used as cautionary tales. It’s the latter cautionary tale I wish to dwell upon. People must reach out in a world where literature on loneliness prevails. In this past weekend alone, I’ve found one book on Lonely by Emily White (it destigmatizes loneliness and it is an interesting read) and two articles on loneliness and depression (The New Yorker and a review of White’s book in Saturday’s Globe & Mail). It feels as if we live in a technologically hooked-up world that seems, in fact, to be coming socially undone.

This morning I find the following story on the murder of an autistic child (see below) which is why Autism Acceptance is so vitally, URGENTLY important — not just for parents but for society at large. Society must begin to realize the incredible challenges that families with autistic kids have when they are NOT included and accepted. If we are a community, then EVERYONE IS RESPONSIBLE. I take the story of Gigi (excerpted below…almost there) very seriously. It shows that no amount of money can fix anything. Better spent, is money accommodating autistic children and making sure every child gets a fair shot at being included and educated. If I have one dream, it would for The Autism Acceptance Project to raise more money to advocate more strongly that acceptance is a social responsibility, and to make a place where autistic kids can be fully accepted and receive an amazing education.

My former neighbour Mike Lipkin is motivational speaker extraordinaire and author of several books, one called Strong Mind, Strong Heart, co-written with Dr. Bernard Levinson. I’m very good friends with his exceptional wife and herself an inspiration, Hilary. Re-reading some of his chapters after a very challenging couple of weeks with Adam reminded me how certain thoughts are defeating. Mike reminds us:

“Are you worried about your children’s future? Are you unsure whether you’re on the high road or the low road? Have you noticed that everyone you talk to has a different idea of where you should be going? Are you slightly confused? Are you a little exhausted by having to make so many decisions all of the time? Are you being bombarded by massive change? Is your brain frying?” (p.88)

I think that many parents can say yes to all of these questions. We worry what will become of our children and where they’ll end up.

We want our kids to go to school, to have places to be social and be accepted there too. With so much negative information getting into our brains from the media or from individuals who believe that an autistic person is only better once they are cured, there are real dangers that lie ahead. By reading Gigi’s story (still coming, I promise) it was clear that she was overwhelmed with trying “fix the problem.” When one discovers that autism cannot be fixed or changed, but perhaps begins to appreciate that while there are challenges, there are many advantages, life begins to look a little less desperate. I urge everyone to consider the list of what an autistic child contributes to the family instead of what s/he takes away. While the rhythm of life certainly changes, it is only those who can adapt and learn to walk to the beat of the new drum who will find joy in life. An autistic child demands that we learn to go with the flow.

Mike Lipkin talks about this a bit, albeit not about autism specifically. He talks about how life “will hit you hard like hail from the sky.” (p. 79) He says that people need to learn how to be resilient. “Resilience is the ability to heal after a hurt. It’s the knowledge that bad things happen in this world, but just because bad things happen, it doesn’t mean you’re bad. People who lack resilience are people who invest too much negative meaning in what has happened to them. They obsess on the dark side of their psyche. They focus on why the knocks happened to them. They ask the fatal question:

Why does this have to happen to me?” (p 80)

We all have dark days. Autistic people also have dark days and learning to be resilient is hardest for them. The world is tough and it hits you hard. And you have to fight it with everything you’ve got. Gigi Jordan could not:

A few weeks ago a terrible story unfolded in a posh midtown Manhattan hotel where a 49-year-old mother, Gigi Jordan, was found “babbling and incoherent” beside the body of her eight-year-old son Jude, dead from an apparent overdose of ground up prescription pills, including Ambien and Xanax. Later it was revealed Jude was autistic.

In his press conference, the stunned and shattered father, estranged from his ex-wife and son for the last two years, said he had no idea what provoked his ex-wife to kill their child. “To be honest, she was the most wonderful mother I’ve ever seen. She left her business, left everything, just to take care of Jude.” Her oldest friend, Dr. Marcus Conant said, “She went to clinics all over the country looking for new treatments, grasping at straws, trying to fix the problem.”

The kind of hopelessness that Gigi faced might have been averted. Also new as a single mother, I know those nights when I feel I have no one to call upon. In those moments, I know I have to pull myself together again and remember that it’s always darkest before the dawn. It doesn’t have to be Adam that can make me feel this way. It could be a separation, a loss of a loved one.

Mike Lipkin would agree:

“One of the greatest sources of stress afflicting the people who come to us is the discontinuity that prevails everywhere. Just when our clients thought they had finally figured out a pattern, the pattern splintered into pieces again.” (p. 88) That pattern in the autism world is expectation. If we expect our children to change, to be fixed, to adapt easily, we cannot be resilient parents.

Mike suggests that we “sketch out many different paths” in our minds to “create an array of different possibilities.” He reminds us that not only is life unstable but that “as human beings, we have deep-rooted desire for certainty and stability, ” and quotes Francis Bacon who nearly 400 years ago said, “If a man begins with certainties, he shall end in doubts. But if he will be content to begin with doubts, he shall end in certainties.”

In autism too, there are no certainties. The article that talks about Gigi, talks about how the autistic brain “hardens” at the age of eight, and it would make any parent want to cry if you’ll believe it. Again, the article is somewhat misleading. It’s only through misleading expectations that a child must be fixed before the age of eight or all is lost that sends many parents into a tailspin like Gigi. Not only is this inaccurate about autistic people, but it’s this type of limited thinking that can stifle us and make us feel hopeless.

I for one know that autistic people continue to learn and the possibilities are endless as they are for any human being. Instead, as Adam also turns eight this April, I will ask myself how Adam and I can make a difference in the lives of others who are also on this path. For helping others and having this self-ascribed mission helps us. We have opportunities to learn. Every hard-knock and experience is another opportunity to learn. We get our hard-knocks every single day every time a school or a program doesn’t appreciate the special contributions Adam can make to the world. It’s enough to make me want to start my own school — and I know many other parents feel the same way (can we harness this energy??).

Do not listen to the media, but trust that your child is a human being filled with potential. The media will always be there, and sometimes it’s just a good idea to turn it off or give it a hearty guffaw because you will be tempted to feel sorry for yourself and this will deplete your capabilities as a parent. Become the kind of warrior that fends off the demons of the mind and the media. Remember that every child has difficult times and when our autistic children have them, we have to take deeper breaths, ask for help and figure out where this journey is supposed to take us alongside our children. While times seem a little easier for those with special needs, there’s a whole lot of discrimination still going on in our communities. WE have to change this together and support each other in our efforts.

“So once again, here’s one unchanging Life Principle over and over again,” says Mike. “You need a Still Mind to think through the confusion and noise. The only way you can master the cacophony on the outside is to have harmony on the inside. Without inner harmony and quiet, you cannot have a Strong Heart. And without a Strong Heart, where are you going to find the resources to not only brave the darkness, but lead others as well?” (p. 90).

It looks like all of us have to lead. It is also important to stop listening to others and begin believing in ourselves and our children.  We are forging ahead with a new demand in this world and that demand is that our children be integrated into our communities. For this, we need to be brave.

Adam and I had a tough weekend adapting, still, to his new home. So much so that I’ve asked his aide to bring him home early so we can begin implementing fun activities here and teach him some structure. It is my hope that he will swagger on his turf soon and we can both get back on the path of working on our mission which is to help others along in the Inclusion Process.

Yesterday morning, after a very dark night, I stopped my inner fight. I leaned in to Adam (who has difficulty speaking but not always understanding), and modeled language (this means that I say a sentence that he might wish to say himself in order to show him that I understand) while he was trying to soothe himself by playing on the computer. “I’m not feeling well, Mommy,” I said in a soft sweet voice. Immediately, Adam stopped what he was doing, came over and leaned his head of feather-hair into my arms for a hug, and we remained like that for a while. As the day wore on, Adam became calmer and things got a little better.

This morning, the sun came out and his happy grin made me shine inside. If we can hold on, the sun will come out again and the possibilities are endless. But you have to believe it. I hope by sharing a bit of our story and adding some inspirational words from my friend Mike, I have helped anyone who is reading this a little too.

For more reading on how to cope with dark days and how to take care of yourself in order to care for your child:

Still Mind, Strong Heart by Dr. Bernard Levinson and Mike Lipkin (not specifically on autism but created for inspiration)
More Than A Mom by Amy Baskin and Heather Fawcett
Autism Acceptance and Survival Guide by Susan Senator

Other Back to Basics Autism Books:

The Autism Answer Book by William Stillman
Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm
Autism Handbook for Parents: Facts and Strategies for Parenting Success by Janice E. Janzen
Parenting Your Complex Child, by Peggy Lou Morgon

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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!

We are home.

Here’s the little after-school video:

VID 00039

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I am awaiting Adam’s arrival home from his midwinter break with his dad. If you’ve been following my blog, the short story is that today, Adam will sleep for the first time in his new home as his mom and dad have separated.

On Family Day, I eagerly await him. On Valentines Day, I felt his absence, but knowing that he would be away, I arranged my first dinner party with family and friends who have been like family to me. Today, Adam’s grandparents and I will welcome him in a way that I have ritualized home and family for myself.

The year of adjusting to single parenthood has been interesting. I find myself brooding sometimes over stigmas that I have inherited. Things like encoded beliefs that we are more valued if someone finds us valuable, or that perhaps I’m not giving everything Adam deserves by being a single parent — that by being single our children feel the empty hole in their existence and it’s somehow our fault. Of course the emotional sides of these questions can be torture (and I’m sorry to say that I think they are unavoidable at first). Yet since these and other questions have caused me a great amount of pain, I am decoding the stereotypes that society has embedded into me that somehow I am incomplete; that to be a “complete family” means a mother, a father and a brood of children. Religion can be cited as a root cause of such beliefs. In order to protect the “tribe,” the history of the Hebrews – as one example – thought it was important to have many children, and Monty Python , well, they had a comment or two about the Catholics and breeding — but this is not to finger point in any way shape or form. It’s just that religion once had much to do with the way people made families and thought about them. War and the costs of having children also contributed to the decline of birth-rates in addition to families without fathers and brothers. Many events have changed our views about the constitution of the family.

Yet in this “day and age,” there are many kinds of families. In fact about 16% of Canadian children are raised by their mothers alone. While the couple stat is still the largest according to Stats Canada, the numbers are rising for “differently configured” families:

Since 2001, there has been a large increase in one-person households.

The census counted more than three times as many one-person households as households with five or more persons in 2006. Of the 12,437,470 private households, 26.8% were one-person households, while 8.7% were households of five or more persons.

Classroom course-packs are created to explain the different configurations of the family. “Learners will explore how Canadian families have changed over time and examine the factors that contribute to changing family and household structures. They will then create written or illustrated profiles of families and households to describe key trends and changes,” it reads.

I’m thinking about Family Day awaiting Adam to come home, but of also the many friends I have who are single parents now. I think of all the friends I have as well who are only-children (do we attract one another or is it really the sign of the times?). So I walk and I’m thinking about being an only-child, how my dad is an only, adopted child, and how Adam is more or less an only-child. Like my mother, Adam’s half-siblings are so much older than he that my mother can attest that her life was very much like that of an only child. As an only child and as a person who has had to adapt many times over the course of her life, I became more flexible about the people in my life and how I regard them as family. For me, the family is an act of daily creation and that of my own making.

I’m quite certain my yearning to belong made me gravitate to people bigger families, but I can also say it’s an alien experience being there. People in big families don’t always understand that people in small families have to work hard to fit in and we don’t necessarily want to, entirely. We need to be accepted for who we are. While we, in small families, may escape the drudge of the family-guilt trip, the feuds or the politics, I suspect people in larger families don’t understand loneliness (another word that is a taboo and way over-stigmatized, thank you very much) and the need to be alone, while also the special skill we have at creating very close friendships. And yes, we need to be social too. As a quick aside, research into loneliness and solitude notes that people who are only children want and need solitude, and are sometimes lonely. Solitude and loneliness are not the same. If you don’t come from a large family, you just don’t get it completely. Having had the experience, it’s sort of like Christmas and all the presents at the beginning, but there exists an overall lack of understanding by both parties — the big family and the lone ranger — on how to co-exist. The lone-ranger, understanding that nothing in life is forever and certain, doesn’t quite comprehend how the big family member can take it all for granted (and sometimes even envies that!). The lone ranger needs to get close and sometimes big families just don’t have that kind of time. It is only at the point where things fall apart can the lone ranger really use her skills and hold people afloat. The big family is created. The small one keeps creating. One is not better than the other. They just are.

I am very close to my parents and to some of my extended family members. My shape of family may not be traditional, but it exists. The act of creating families is an active experience not exclusive to a couple and procreation. Let’s just say that I don’t take my version of family for granted, and I highly appreciated the bigger one I once belonged to (and of course who are still there and who I still love in my lone-ranger kind of way).

I watch the other single people today as I go on my walk on this chilly February day in Toronto — some are eating alone at restaurant tables as I pass by. I imagine some of them are without children and others are older who perhaps have lost their families, and I think about how most of us are trying to do the best we can, and some of us can feel particularly lonely on a Family Day. Yet I bet that most of these people have friends (who are with their families) and are chit-chatting with the people who have to work today, or maybe with the person at the table next to them. Some other families might be taking great advantage of the holiday and may be spending it together, hopefully not pitying those who are without families (remember, pity stands perilously on the ledge of fear). Like Christmas, contrived holidays can make a lot of people who do not belong to a traditional family, feel like they are missing something. No one should have to feel as if they are missing something!

What I’m happy to see is that all kinds of families are beginning to become more accepted, but we need to discuss the nature of the family even more so that we can support all kinds of families — gay, single, common law, married, separated, extended, and the groups of friends that really, can be more like family than the families we’re born to. Because really, none of us are alone. We are one big family and an important member of mine is about to join me in his new home.

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It is Valentines Day. Aside from the red commercial hearts and roses we will buy only because the storefront displays will beckon, I wonder if people will remember fragility. The red hearts may be plastic but the real human ones bear no resemblance.

Today is my official final day in my old home — the home I built with Adam’s father. I did move from it a few days ago — I don’t think leaving precisely on Valentine’s Day would have been easy because my mind tends to brood over such Hallmark things, despite my keen awareness of plasticity. As I said I would in a previous post, I ritualized in my own way. I said goodbye to the rooms, picked out a stone from the backyard. But I couldn’t stay long. It was just too painful once all of my things were gone. My memories are still too recent — Adam and I there snuggling just a few days earlier.

“Someone else lives in the house I thought I’d never leave. And the life I’ve lived in that house, I now speak of in the past tense….The keys now belong to someone else. I can’t open that door anymore, and the place beyond it is now as inaccessible to me as all the life I’ve lived there, retrievable only in photographs, story and memory. Still, while I lived in that house it seemed that my life would continue there forever, that it was as substantial as the sofa I settled into in my study with a cup of tea at the end of each day.” (Excerpted from Louise DeSalvo’s On Moving: a Writer’s Meditation on New Houses, Old Haunts And Finding Home Again.)

I created The Autism Acceptance Project in that study. Now, I’ve created a new study where you see me sitting now. I am moving on. Aside from organizing a few things, I am trying to settle in my new home. I feel like maybe I can get back to deadlines, TAAProject and my writing. This evening, my friends and family will gather in my new dining room to help me toast a another new journey in another new home. Again, I believe rituals are so important.

I await Adam to return on Monday afternoon from his mid-winter break so I can help him adjust here. We saw the neurologist last week who believes his spasms have more to do with transitions than anything else. Yet, to be prudent, he must still have the EEG to ensure this isn’t something biological. My suspicion, however, is that Adam has been just as stressed as I have been. According to that infamous “top-life stresses” list, moving and divorce are right up there. Dash in a few other things over the past two years and the plate, as they say, has been pretty full. Being in the new house and taking it in for a few days on my own helps me calm with it, and I need to be calm for Adam. He feels and takes on every emotion I have. As his mother, it’s hard not to feel guilty, but I try to fend that off as it is such a waste of precious energy. I have to teach Adam many things two of which; 1) I am human and, 2) that the only reason we are here is to make the best of what we have. I believe these are good things to teach autistic children — the children we so often say need consistency and structure. While I believe that to be so true, it’s not always the way life goes.

Saying that, I’ve also learned an important lesson on the fragility of the heart and of the roots we think we build. In fact, I think the lesson I was meant to learn was that of impermanence. We all want our children to feel stable as it is an important factor in healthy growth, but I’m beginning to believe that an important gift we can give to our children is to also teach about how things change. “Paint peels, plaster cracks, and gardens, of course, are the most ephemeral constructions of all.” (Louse DeSalvo p. 149). I know we are supposed to keep structure in our children’s lives — particularly autistic children who are so prone to anxiety — but the fact of the matter is that all of life is outside of our control. We take what we are given and polish it. And it’s definitely okay to cherish it too.

“The gleam of a loved house lasts only as long as he who loves it can keep polishing.” (p.149) This goes for all the people we love too.

Happy Valentines Day.

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This post will be brief as I am living in the moment of moving homes. Adam came to our new home today before he goes on a mid-winter break with his dad. His body-jerks have returned and he cries in his new room. “Are you scared,” I ask.

“Are you scared?” he echoes back with then a slight delay. “Scared,” he says forcefully.

We have made numerous visits to the home, but because Adam can understand what he cannot express fluidly with words, he is reacting. It is strange. He knows the move is now imminent. He is experiencing the stress that other children experience. He has experienced so much.

It brings me back to the time when I was six years old and my parents moved homes. I remember when they looked at it, when they purchased it — my dad and I put the “sold” sign on the front yard. So new was the house, the lawn was not yet in and we perched the sign in the dirt. Dad made a big deal out of it, I remember that much. He was proud. It’s amazing what impressions we retain from out childhoods. It wasn’t much longer after that — I returned from a weekend with my grandparents to sleep (all of a sudden) in my new home. I believe there was even a stuffed animal waiting for me in a newly erected brass mailbox by the front door. It was summer. The “welcome committee” was ready to do its job and make me feel right at home. That committee was my parents.

I remember that arrival and how strange it was, but I’ve lost the memory of sleeping there my first night. I’m certain my extremely attentive and loving mother did everything she could to make me feel I was at home. Yet, it didn’t feel quite right. I couldn’t ride my bike around the house in my old neighbourhood where a garden was planted and grass was laid and my good pals were gone (I was particularly close to the boys I punched in the stomach — it wasn’t my idea… it was my father’s. He tried to make me into a tough girl and STILL relays that story proudly to anyone who will listen…kind of embarrassing at my age). Nope, they were all gone and all I had was the bike and the dirt for my early introduction. The plumbing still wasn’t working in the block so new, that we had to use the model home down the street to take a pee. Indeed, that was a strange feeling.

My parents are still around and are extremely loving grandparents to my son, not to mention incredibly supportive of their daughter who is now not only a single mother, but also their only-child having another life “adjustment.” Let’s just say that they mean the world to me and I’m certain to Adam. On Monday, when Adam returns home from his break with his dad, those same grandparents will be the welcoming committee to his new home that he will settle into with mom.

Adam is only a year or so older than I was when I made the major move. I try to appreciate how strange this all feels on top of parents who are no longer together. I think of how confusing that must be; how stressful sometimes, and because Adam is autistic, he manifests that stress in physical behaviour. It is the only outlet he has. Even though we are all doing our best to help him along, Adam has been expressing how he feels about the matter.

Expressing boldly without words.

I now play a video I made with Adam’s grand-dad a few years ago. I love the little guy more than words can say. This is a look backwards with gratitude while also hoping the future will bring us both peace.

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Curiousity is a wonderful human trait. Adam is autistic and while he needs some regularity and structure and familiar environments, he also needs to explore new ones. He is curious. He likes to explore — in his own time — new foods, new things, new places. I pride myself on having traveled with Adam even when it wasn’t easy to travel with him. I do it with him as a single parent now, and his dad and I did it together when we were married. While I was tentative in Adam’s early years of flying him as far as Africa, I do not rule it out as he grows older. Just because Adam is autistic does not mean that he should not see the world. It’s how we orchestrate the process and itinerary that’s important. As a parent, I know I also have to be prepared for anything. Too many expectations can foil the best of plans.

We’ve had great flights and not-so-great-flights. I can never predict or prepare enough. I have learned from Adam to give ourselves plenty of time, to pack his bag with his favorite toys, foods, and DVD’s. I generally know that early morning flights seem to be easier than mid-to-late afternoon flights, although like everything, there are exceptions to that rule. Adam can be happy and calm as I “work” the flight with him. As a parent of an autistic child, I have learned to stay on top of Adam’s needs before any anxiety is triggered, for once triggered, it can be difficult to calm down. So as a parent, I don’t get to read the paper or a good book when I’m on a flight with Adam, but I still believe the effort is worth it. Travel, like autism and life, is a journey we cannot perfect. We cannot always predict how bumpy the flight may be. We can’t predict delays that are a normal part of travel. We can’t predict the mood our child might be in as much as we cannot predict our own. We can, however, try to prepare ourselves and do our best to keep calm in challenging circumstances.

I’m talking about travel because not only do I thrive on it myself, but as a single mom I look forward to exploring the world with my autistic son. We’ve been to Alaska, we’ve been to the U.S. and the Caribbean. I am looking forward to taking Adam to Italy where I have a feeling he will love it for the sights, the gentle sounds of a murmuring town square, the Gelato, tomatoes and salami — not to to mention the flocks of pigeons he can chase and the magnificent art. It’s my dream to take Adam abroad. But it’s not my dream to endure a difficult flight. It’s my problem, I know. I don’t like to see Adam suffer. I think I have to just get things organized (like rent one place and make it our “home base” for several weeks). I am admittedly tentative about the overnight flight to Europe. Everyone tells me that this should be the easiest because children “can sleep on an overnight flight.” They don’t know my Adam. I remember that twelve-hour day from Alaska back to Toronto where Adam was beside himself. We learned that Gravol didn’t put him to sleep as it sometimes does for other children. I’ve learned that Chlorohydrate doesn’t settle Adam before an EEG. I’ve learned that Melatonin won’t relax him on a flight, either. Adam, my Adam, is my prize-fighter. If Adam is anxious and does not want to sleep, giving him sedatives may have the opposite effect. He may metabolize medication differently. Or, he just too anxious, period.

I will eventually book that trip to Italy at some point, deal with my fears and see what happens. I think I’m a well-prepared mom and it’s the times when I’m most prepared that I find easiest for both Adam and I. I’ve found some good suggestions on traveling with the autistic child (see below) that others may find useful and I’ve employed about all of these strategies. But I’ve not yet traveled afar with the little one and I notice that no one else has written a thing on the Transatlantic flight and the autistic child. I assume (hope, really) that some autistic adults may have some suggestions on helping a prize sleep-fighter enjoy his mid-air travels. Like so much information we seek as parents of autistic children, there simply isn’t enough to support us on our travels in life and abroad.

Travel Tip Sites:
Autism Family Travel
Coping With Autism (on Vacation)
How To Prepare For Traveling With A Child With Autism
Caring for Kids — Air Travel

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I feel manipulated. Not by a person, but by the many messages I am getting about autism and high divorce rates. Imagine me now looking through new eyes. Adam’s dad and I have been separated for little over a year now. Last night on TVO aired Autism The Musical and the BBC production of The Autism Puzzle (the latter which I found to be a good documentary…it is the second time I’ve watched it) and today on CNN (again) I am confronted with a deluge of autism media and I am sitting in my bed, alone, weeping, laughing at myself — weeping again. I might look to an outsider like Meg Ryan in some Hollywood romantic comedy. It’s not that I didn’t appreciate Autism The Musical. It’s just that I have to think critically of how a general public might view some of the very real comments — so real they made me weep. Take a look at this story before continuing to read:

Lisa Jo Rudy of About.com on all things autism (an autism mom herself) also recollects about Adam’s dad (from the movie — not my Adam):“Adam’s dad, now estranged from his mom, is bitter because of his wife’s obsession with Adam’s autism. Mom, meanwhile, spins out of control when she thinks her son’s cello solo will be cut from the final musical production.”Adam’s dad (in the film) suggests that he believes all autism moms suffer divorce because they are scrounging every ounce of information for the benefit of the child. Adam’s mom and dad are still together during the filming and the mom discusses how dad has had a long-standing affair, and she is clearly overstressed and bitter and I understand all of that.

As I’ve said, I’m looking through different eyes now. Yes, Adam didn’t sleep and I was so grossly sleep deprived. Yes, I was obsessed with finding out every ounce of information in a world that doesn’t accept autism. As a mother who loves their child (or a father — think Robert Hughes, Ralph Savarese among hundreds of other incredibly dedicated dads), this was the obvious choice. As an educated person, I read and study…and go back to university to get a degree in Critical Disability Studies. It is my way of dealing with things. I have a need to help Adam in this world that still does not offer enough programs, services, care, respect and inclusion. And I’m choosing to accept the choice with open arms. I’m choosing to move forward and continue learning from all the lessons on this autism journey.

Truth about divorce lies somewhere between anecdote and statistics. While I have compassion and I feel that this is so real for so many families, I have to question if we are all being manipulated. I am thinking of Jenny McCarthy and her story of feeling alone in her marriage with her autistic child. I think many parents feel alone when they are researching and searching for scarce programs — indeed there is a feeling of isolation that sometimes even extended family members will never understand. I remember the Autism Everyday Video and how the number “eighty percent of all autism marriages end in divorce” was thrown out as a matter of fact, rather than what it is — speculation. I spoke out about the “wanting to drive off the George Washington bridge” with the autistic child comment because it was used in a campaign to raise money for autism by making autism look terrible, not because I don’t believe or do not have compassion for the moments when some parent may be in a moment of despair. It’s all real, you see. The divorce is real too. Some partners do not want to deal with the responsibilities of raising children — particularly disabled children. Some partners do not leave just because of autism. The problem with using these stories in autism promotion videos is that it is used to sway our feelings about autistic people in particular. It uses autistic people as a crutch for the gamut of natural human emotion. People with non-disabled children also get divorced. People with non-disabled children also do unspeakable acts to their children. It is simply not fair to blame autism or disability as the cause for despair and divorce.

There may be some truth to divorce and disability, but statistics don’t necessarily agree. Apparently divorce rates, according to Kristina Chew’s article, are down and I’m particularly concerned when disability is used as the sole reason for a divorce. Kristina also writes: “Citing autism as the reason for a marriage failing can be seen as yet another reason for saying why autism is so awful. Taking care of Charlie is a privilege but it is not always easy. Childcare arrangements are a constant juggling act for Jim and me and we tend always to think of Charlie’s needs first, and of each other’s after that. We both agree that it should be this way. Jim and I would much prefer living closer to New York City due to our jobs but Charlie’s education comes first. We left the house that we planned to live in for 30 years in order that Charlie could have the right school placement. (And until this September we were living with my in-laws, which was very, if not too, interesting at times.) Jim and I have made many of our choices based on ‘what Charlie needs’ rather than on what would be best for the two of us and I do hope that, ultimately this will be best for the three of us.”

It doesn’t matter what stressors are involved in marriage — the more there are, the more vulnerable a marriage becomes. Some couples manage to work together, some do not. Sometimes, when the marriage is done and some of the stressors are gone, parents become better at working together. Sometimes challenges bring couples closer together. There is no magic formula and there are no right or wrong answers. Is raising a child with a disability more challenging? Absolutely. Should it be blamed for divorce? No.

What we need along with the compassion is to look at our sorry weeping selves in the mirror to ask analytical questions. Who is producing the video? Is it a real story or is a fundraising video? What is it asking us to believe? Does it pull on our heart-strings to sell copies? Telling truth means that the conclusions are not necessarily clear — at least not for public consumption. I for one, will not blame autism or Adam for my marital situation, even when day-to-day life is not always easy. In her article Genie In A Bottle, Shelley Hendrix in HuffPo discusses divorce, emotion and her autistic son: “For a very simple reason over the last six years, I have clung to the hope that my son Liam was insulated from the emotional distress that can envelope a child when their parents divorce. He has autism.

For once, I had hoped that his exceptionality was a perk, protecting his innocence and preserving his heart. I was wrong. Very, very wrong. With his nonverbal days behind him and his growing conversational skills he can express himself, just like any other child that experiences divorce.

His message this summer? He desperately misses the unified family that he once had. His questions and comments mirror the conversations I have had with his younger sister throughout the years. Is it his fault? Why can’t we get back together? Why did you get a divorce? Did you love daddy? Did he love you?.”

I worry like any other parent during a time of divorce. I too want to protect Adam, as all children of divorce seem to do, from blaming himself. I am particularly aware of how he manifests anxiety and worry that it’s because of divorce — and as autistic children are not unaffected, I must assume that there are days when his head wonders what the heck has happened. One day, like Liam, he may be able to tell me so, and I don’t think anyone should underestimate the effects of divorce on the autistic child just because that child seems happy all the time, or cannot talk, or does not appear to be aware of what’s going on.

Two adults are responsible for making it (or not) and society is also responsible for supporting marriage and families — particularly families who have more on their plates because of the lack of community supports. (And uh hum — who is going to want to provide supports when people — as the woman interviewed – discuss autism as worse than getting a root canal?!) Two divorced adults are also responsible for making transitions in life for the autistic child as smooth as possible, while respecting the child’s need to express their concerns which are manifested by anxiety (and we know as autism parents that anxiety doesn’t always look anxious, but also hyper). Adults are responsible for taking the responsibility. There is no easy answer for our lives in marriage or divorce; no predictions.

The work I must do for Adam still sits in front of me. The assistance he may require in his adult years is likely. I look at it this way: when a marriage ends there are new opportunities — to build strength and hopefully cooperation. Right now, as I myself am going through this new transition I have yet another opportunity to look at pity in the eye and step forward proudly with my autistic child.

Of course I would not be human if I did not wonder if more support, programs and information would have lessened the time I spent assisting Adam, coordinating his teams, his school requirements, his IEP, his communication devices and needs, playgroups… Would I have done things differently if there was more support out there? If I had had more sleep? This is a question I cannot yet answer. All I can say for now is that it was a choice grown from love and devotion. Choices have consequences and rewards. I don’t blame autism. I don’t blame a person. It’s what was meant to happen. The work we do today, I believe, may help others tomorrow. Adam, for one, will know that he is valued and that I valued the time I was married to his father. I value the lessons we continue to learn and the many joys and struggles on our journey.

I started the Joy of Autism blog in 2005 with the support of my then-husband who told me to “start a blog” not unlike Julia’s husband in Julia and Julia. He apparently believed that, like Julia, I “have thoughts.” :) He supported the work I did for The Autism Acceptance Project. But life, as they say, is “complicated.” Here we are. Who would believe that I think that even all of this is a gift?

I do. Now, on with the future.

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