There is one thing I’d like to point out to Ms. Grandin, if I may. It’s the assumption about the autism spectrum or “continuum” as she puts it. It is tricky because it has been an easy way to describe and try to understand autism. Yet like most things easy, they are not fully descriptive.

It is the point at which she, perhaps inadvertently in order to simplify the description, lowers the intelligence level of non verbal autistic people to the bottom of the “spectrum,” to the “verbal” autistics who are “brilliant.” For all the non verbal or partially verbal autistic people out there, many of who comment here and/or write their own blogs and even do their own presentations, I’d like to add that non verbal people can also be of “normal,” “bright,” or of “gifted” intelligence. Of course verbal and non verbal people can also be more cognitively challenged. There is no way we can use the “continuum,” really, to effectively describe autism and intelligence and I think we need to talk about this more.

Temple Grandin talks a lot about thinking in pictures and she can verbalize this well. For many autistic folks who cannot, like my son Adam among others, I can say that verbal ability does not equal intelligence. I hope that Temple Grandin can speak a little bit more on that in the future so as not to cast another stereotype that she perhaps does not intentionally mean to cast.

In this blog, I speak a lot about the visual — visual data and the potential for many autistic people to translate so much data into the visual so that we can better understand it. There could be many opportunities for our children if we look at this seriously and nuture the skills. As for her segment on visual perception, I once posted a drawing by Adam, who has motor planning issues, but clearly had an advanced perspective, demonstrated in some of his artwork, over his same-aged peers. I have always noted and recognized Adam’s visual abilities. It’s still incredibly difficult to find teachers who recognize and are able to nuture this ability. It’s incredibly frustrating, in fact.

I do thank Temple Grandin for being out there to discuss the need for mentors and the contributions our children can make to society, if given the chance and opportunities.

In keeping with this post, Tyler Cowen, author of Create Your Own Ecomony also writes another piece on autism, ability and autism diversity.

Watch her now on TED:

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Watching me these days and I think you will find me deep in thought. I’m dreaming, thinking. Not the kind of dreaming where I’m floating (well, okay, sometimes), but the kind that I think is important for all parents of autistic children. Maybe this comes at the right time — right before Adam begins his new school.

Usually when we speak of the future, there is fear in our voices. We believe that there will be fewer services, aides and opportunities once our kids turn twenty-one. This is the case for many people. While we must work on the programs and services that autistic people may need throughout their lifetimes, I also want to think about all that is possible. I believe that the more we do this, the more likely we will achieve the kinds of supports and opportunities for our kids that we fear we will lose.

I dream about riding a bike with Adam. Kristina Chew’s stories about Charlie and her husband James has motivated me to teach Adam how to cycle better (he has a tendency to always be looking where he has been rather than where he is going…a rather ironic notion).

I think about taking Adam around the world, and if not entirely around it or entirely with me, I’d like to think he will see the world in any event. I think of Horseboy and recently the travels of Larry Bissonnette and Tracy Thresh as part of the film Wretches and Jabberers (great title). I think that if we’ve come this far, we can likely go farther both physically as well as mentally. I took Adam to Mexico last year, and lugged him deep down into Mayan caves, and there will be more. Sure, we’ll have to endure some discomfort along the way, some rude comments, leering eyes and possibly some meltdowns with delayed travel and other frustrations, but I consider when the time is right, it will be worth the try. I mean, Adam is already an explorer. He will find every nook, every cranny, every inviting pathway that I, in my perpetual goal-state-of-mind, will miss far too often. Even with the liklihood of some discomfort, I can’t help but wonder if moving around and seeing new things may be the best education of his life, and quite likely, of mine.

I dream about Adam in higher education — be in college or university, exploring what he loves and being assisted if he needs it. So many people delay their entrance also into higher education. So the timing just doesn’t matter. There are many stories of autistic adults in universities right now and thanks to them, it keeps my dream alive.

I dream of Adam having his friends and people he loves around him. He likes people. Although we are addicted to social networking (you can find me everyday twittering and FB’ing and blogging — I’m torn about the whole matter), I had written for the TAAP exhibition in 2007 how technology really assisted the social connections between autistic individuals. Adam also uses the computer (although not yet for that) and he has a friend he goes to school with. I see no reason, as he is helped along the way, why the wouldn’t have people he loves to have around him. The many autistic friends I’ve made along the my journey of learning how to support my autistic child has helped me keep this dream alive.

I was also thinking of the dreams I had for Adam when he was newly diagnosed and a toddler — how I had hoped he could go to a good school, become more independent and begin to communicate. Although he is still challenged on the latter, he communicates far better than he used to. The autistic teenagers and adults who use Assisted and Augmentative Communication have helped keep this dream alive.

I dream of Adam cooking his own food because he seems to enjoy helping me out in the kitchen. Although this is not always possible for all autistic people, for others, it is. Susan Senator and her family write a lot about cooking (or is it that I’m especially alert to Susan’s food postings?). She and her son Nat have helped me keep this dream alive.

I dream of Adam continuously enjoying self-expression. He has shown a particular fondness towards art. Those of you who know my passion for this subject will know that I have many autistic artists to thank and who have kept this dream for Adam’s happiness in self-expression, alive. It would be difficult for me to list everyone here.

I realize that since before I started writing The Joy of Autism blog, I have so many people to be thankful for in helping keeping dreams alive. There are many stories on the web now that weren’t when I began writing in 2005. The daily successes are worth reading every day.

Although Adam is still quite different, he has accomplished so much. As his parent, my dreams for him as well as myself are thriving. I think this is what we most fear as new parents — that the weight of unknown responsibilities will take these dreams and hopes away — not only for our children, but for ourselves. While I have not written the entire list of my dreams here today, I see that dreams, as we adjust our views and expectations of our autistic children, really do come true.

As for Adam, I’m quite certain he’ll have many of his own dreams to share one day.

What are yours?

——–
There are so many autistic people and parents who have helped keep many of my dreams alive that I have not listed here today. I’ve been writing about many of them for a few years now.

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Sometimes a simple photo inspires me. This one was taken over a year ago. The gal Adam is holding hands with is the daughter of my most beloved girlfriend in the world. Life got a little hectic for everyone and Adam didn’t get to see T (the girl) too often this past year.

T was here with her mom about a week ago and in Adam’s way, he swam at his own pace, doing his own thing. The water calls him to dive under, I imagine because the feeling around him makes him feel secure. For Adam, tight spaces and squishes are an essential part of living well. T was diving into the pool with such enthusiasm, asking her mom to “look” as she demonstrated the various poses while jumping and then plunging into the water.

In the picture above, we had spent a weekend together in the same hotel room. Adam got cozy with T, although in Adam’s way it always takes some time. Last week, Adam watched T closely, sometimes doing his thing, gazing out of the sides of his eyes, sometimes watching her straight on. Unlike other children, however, Adam cannot yet consistently initiate play or “get in there” at the same pace. I know that if T were around a whole lot more, he would be following her around, or at least he might go along with what she wanted to do.

It’s just that way with my little autie. He is like the proverbial cat circling and scoping. Eventually he’ll just snuggle in your lap.

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I was very excited when Pascal Cheng told me that Larry Bissonnette and he, both of whom I brought to Toronto several years ago, and Tracy Thresher were traveling the world to change views about autism. They travel to Finland, Japan and Sri Lanka to change minds, attitudes and debunk myths which was documented in the film Wretches and Jabberers. We have learned from anthropologists like Roy Grinker in Unstrange Minds, among others, that the views about autism around the world can be less forgiving because of cultural differences.

 Adam was diagnosed at 19 months of age as a hyperlexic, “high-functioning” autistic boy. Over the years, however, he shows ability, is very bright and intelligent, but Adam has real communication difficulties and more “classic” aspects of autism…so dx is always precarious in the early years. I think of the very different experiences between Adam and Larry — how the world has changed so for autistic people and I am grateful for the generousity of autistic adults. 

As a parent in this for just over six years now, I have to say thank you to everyone who put forth this effort. I often dream of Adam traveling the world, talking to other people, helping other people. That’s my dream, I suppose, and not necessarily his, but that’s what parents tend to do. So even if Adam chooses another path,  I am thrilled that Larry and Tracy are forging a path for all the “Adams” who will grow up very soon.

“We are more like you than not,” says Larry in the following trailer.

That’s for certain.

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

Case in point:

He is curious.

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

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

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

He climbs and moves and climbs.

I tell him not to.

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

He thinks disgusting things are funny.

I don’t like it.

He thinks that’s funny.

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

He thinks that’s funny.

He seeks out attention.

He likes attention.

I find myself sounding like a nagging mother.

I don’t find that at all funny.

He knows things.

He figures people out.

He can manipulate people.

He is becoming more aware.

He is becoming self aware.

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

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

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

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

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

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

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Tune in 10:00 a.m. Central Time as I will be speaking on The Autism Acceptance Project on blogtalkradio.

Also posted on their website is a video I made several years ago regarding autism represented in the media:

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“There is joy and happiness and laughter in our homes, just like in yours. We have dreams and so does he. We go out for pizza and play on playgrounds and drag our children on boring errands for back-to-school clothes. We bribe and scold and lose our temper and make mistakes and start over the next morning. My son is “lucky” because his father buys him eleventy hundred Star Wars toys every month, and because sometimes I make a pan of chocolate brownies before dinner, and because we live in an area with well-funded, progressive early intervention and special needs programs … not because the stars aligned and blessed him with two perfect, sainted parents who are uniquely suited to drive him to occupational therapy.”

Love that.

I also really enjoyed reading about the IPad lately and Shannon has written a great article about it here with some videos. I’ll definitely be checking it out for Adam.

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

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

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

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

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

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

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In response, I got a comment stating that I should attend Autreat. Well, I had in 2007. Back in my earlier days, because the climate among parent communities was so negative, I sought out autistic individuals who shaped my view of autism and assisted Adam and I on our journey. I thought instead of having people sort through 800 pages of archived Joy of Autism blog (on the right margin), I’d dig this up. It’s a copy and paste job, so  I apologize in advance if the formatting appears off. No matter how I tried to fix it, it just kept reverting into a mess.

I called this post:

Are We Listening?

The audience waved their hands in the air – the deaf sign for waving. There were others who

rocked back and forth, some other adults who gracefully flapped their hands. Drake sat in

the front and squealed in acknowledgment when the speaker said, “just because you

don’t cry, doesn’t mean you are not sad,” in acknowledgment to how many autistics take time to

process their emotions. The squeal was a “yes yes!” to the speaker’s comments, and in any other

setting, this highly intelligent, non verbal autistic eleven-year-old may have been

asked to leave, or others might have stared, thinking that he didn’t

think of anything at all. Yet Drake kept doing this. He sat longer

than any other eleven-year-old I’ve ever met and made his noises

in acknowledgment of the important points.

“I am fortified by being here,” he wrote on his Lightwriter, a keyboard with a small

screen that speaks for him after he types his sentence.

I sat in the room and wished Adam was with me, his soft fiveyear-

old hair brushing my jaw, snuggling up to me as he always

does, and then taking breaks to jump up and down. Yet, I felt

comforted in knowing that he would be there next year, and the

year after that. I felt comforted that all of these people are him

years from now, and how privileged I felt that they were paving

the way, for it is a tough way, like swimming up a rapid flowing

stream.

It is rare to sit in a room with so many other autistic people, some

walking back and forth in the lunch room humming to themselves

in a heightened perhaps even ecstatic state, where I can only

imagine in other less accepting settings, would be frowned upon.

When I came to squeeze into the small space where this young

man hummed to deposit my lunch tray, he politely moved away to

make room for me, extremely aware despite the fact that some people

might believe otherwise.

When I saw him next time in the leisure area, he was asking others

to play a board game with him. Other autistic kids were hanging

out together, and sprawled themselves out on couches in front of

the TV, not unlike other teenagers. Around the grounds, people

wore badges that indicated if they wanted to talk, if they would

only talk to people they knew, or if they did not wish to talk at all.

There were many times I wanted to flip my own badge that

indicated the latter – as I am a person who likes to absorb and

observe, yet have been taught to socialize and be diplomatic and

suffer from a compulsion to keep that impression going. Although

it’s a skill I’ve acquired, I still find it exhausting. I wished that

those badges existed at the many functions I have attended,

where most people pretend to be something that they’re not, or

interested in things that others say that they actually have no

interest in at all. I consider all the wasted time I’ve had to spend

doing “small talk.” and all the time I spend in explaining life as we

know it to people who don’t have the time to understand.

The heat was oppressive this time of year. Yet, we were shaded by

trees. My hair unkempt and my skin moist from the humidity, I

unraveled. I could do what I needed to, to think. We were free to

lie down during lectures, or roll up and be comfortable on the

otherwise uncomfortable frayed wool couches — remnants from

the 1970’s. No lights were on in the summer heat, the hardworking

garbled hum of old air conditioners tilting precariously in

the windows of the lecture room.

The atmosphere was as honest as the discussions were. We tried

to figure out how to manage all the issues confronting autistic

people today, how to give another message to parents that there

are more options than they are aware of – because they don’t hear

it when all they hear about is ABA (in Canada specifically). The

atmosphere was welcoming, where fear and confrontation were

strangely absent. Strange because it is a sad reality of autism

politics these days – where some non autistic people never get

exposed to disabled people to hear the real views and issues. It

was strange as it was relieving. This was autism, and it was

comfortable. I didn’t have to be appropriate, I could say when I

had to leave without a guilty fuss. No one will judge me here. And

no one will be judged.

It’s called Autreat. It’s a place I’ve never felt or experienced

before, and I will want Adam to come again so he too can be

fortified. Adam’s fortification is what’s tantamount here, as I try to

raise him so that he knows who he is with autism, amidst a world

that doesn’t understand it or explains it inappropriately. It is

important that he understand himself as not a defect, but as a

person. It is why we as parents cannot accept misery rhetoric,

because no matter what level of “functioning” (that term means

nothing as it has no bearing on either intelligence or awareness), no

autistic child should have to grow up in an inhospitable

environment that threatens their self-worth. Inhospitable and

unsafe environments are those in which we seek to normalize and

reward normal responses to tasks where the autistic response is

never acknowledged, rewarded or accepted, thus valued. By never

rewarding an autistic person for being autistic, we threaten their

self-esteem and identity. Most will grow up being confused

because every well-intentioned therapist was so “nice” to them.

We have to train our therapists and clinicians to understand

autism – because most of them currently do not. They do not yet

understand how an autistic person learns. They turn to

operationalized methods that all seek at this time to make the child

not autistic, without valuing the autism. DRI and RDI are also

designed to “create a mind,” or have a child “play normally” to

which the autistic audience gasped in disgust. What are those

“gurus” implying? That the autistic people who could sit and listen,

and contribute, either verbally or in writing need to re-create their

minds in a fashion that suits the rest of the so-called “normal”

population?

I surmised that many parents are and are reluctant to give up

ABA becasue they may not understand that there ARE so many

options and so many opportunities to educate and for a great

quality of life. The latter is what hopefully unites us. What

disunites us is the definition of what that quality of life entails – a

life with or without autism. I seek the former because I have seen

that we can live a good life, thank you very much.

Quality of life is not determined by whether or not you drive a car,

but rather, what you make of your life, and your attitude. Autistic

people are capable, and how can we express to parents who only

see — particularly those whose children who are more profoundly

affected by the disabling aspects of autism – sensory issues,

anxiety, no spoken communication – that their children are there

and aware.

How can we express that the most important thing – our

children’s right – is to be who they are, but to provide AC

(augmentative communication) in the absence of speech, instead of

trying to force them to talk when they cannot.

How can we express that it is the teachers and clinicians who must

learn how an autistic person learns, and not expect a typical

response that can render an autistic person a robot. (All an autistic

person ends up learning is to respond the way the instructor wants

so that they can get the hell out of there).

How can we express the dangers of therapies that try to teach in a

way that is not natural – for our benefit so WE can feel satisfied

that the child has responded – that the child may in the future as a

result of such approaches, not understand who they are?

This is the most important aspect. Know who you are. Accept

your autistic child for who they are because this will allow

them to know themselves. Pave the way for acceptance and yes,

teach. But learn first. Learn how an autistic person learns and keep

trying to adapt until you find the method that clicks with your

child. That will constantly change.

Be a parent, not a therapist. Do not treat your child as a project,

but rather, treat them and raise them as a child. Model actions so

that a child can learn. Do not expect typical answers to “what is

this?” and other typical questions. Find out ways to pull out what

the autistic child does know. Do they know and answer better on

the computer? Then use that. Accept all forms of communication,

for they are valid and real. We are all obligated as parents to find

the AC that works best for our children. That is their right to have

over and above all those other therapies and monies wasted on

“behavioural therapies.”

Allow breaks for autistic children to re-focus. Truly seek to

understand their sensory needs. Do not offer artificial

reinforcements, like “good talking!.” They are fake and the child

will know it. Accept echolalia as sometimes the only language a

child can retrieve, particularly in moments when they are

overwhelmed, and then listen to what their body language and

faces are telling you.

Most parents want the best their our children. The difference is in

how we regard autism – a medical disease, which it is not, or a

disability with social implications, in other words, we have to deal

with the societal barriers that obstruct the opportunities for our

children. We cannot accept the latter. We must accept autism and

move on with the real barriers – the attitudes that will continue to

proliferate segregation.

We need to be advocating for inclusion in the school system and for

the accommodations that need to be made to acquire that. We

need to educate others as to the value of doing this – for all

children, not just the disabled ones – in cultivating sensitivity and

understanding. We need to teach our children how to advocate for

themselves – yes, even the non verbal ones. And for those who are

more profoundly affected by the more disabling aspects of autism,

we can seek the help of other autistic individuals to be mentors

and to advocate for the services that do not degrade and oppress

others.

The one thing we must do is to make other parents aware that

there are so many options about which they hear little or are

belittled by an ABA movement that continues to espouse

inaccurate facts about ABA under the guise of false scientific

“proof.”

We need to stop participating in genetic research studies which

determines only “prenatal risk” and threatens the existence of

autistic people. This research is done under the guise of providing

“better and earlier interventions,” which are non existent. What

babies need is love, support and engagement like any other baby.

The only purpose of this research is to determine genetic risk

factors. We do not hear about research that seeks to help autistic

people be the best autistic people they can be.

We need to redirect our attention to merging help (with the more

disabling aspects of autism) with respect (respecting the autistic

person’s right to exist) and realize that there is life beyond an

over-simplified “cure.” Further, helping the more disabling aspects

of autism (anxiety, sensory issues) can exist outside of a “cure” for

autism.

I urge every parent (but for those who visit this blog, I bet I’m

preaching to the choir), to actively seek out the alternatives and

become proactive in not accepting strategies that change your

child to “appear normal” because they will ultimately be very

damaging to their self-image as teenagers and adults, and we will

have greater problems to contend with later. There are options

outside of ABA which takes time from you to actively watch and

listen and respect your child.

Above all, as Anne Donnellan said in 1984, “make the least

dangerous assumptions” about your child. Or as Douglas Biklen

said, “presume competence.”

“The least dangerous assumption states that in the

absence of absolute evidence, it is essential to make the s

assumption that , if proven to be false, would be the least

dangerous to the individual.” (Zach Rosetti and Carol Tashie

from the Communicator, Autism National Committee Newsletter,

Inclusive Education edition.)

The constant banter that autistic or non verbal people who do not

look you in the eye are “not there” or “not aware,” or “cannot

speak for themselves” is an extremely dangerous assumption. All

people can speak for themselves in many different ways.

Are we listening?

PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 6/29/2007 09:20:00 AM

23 COM M ENTS LINKS TO THIS POST

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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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Fellow Aut-Mom Bloggers: Kristina Chew, Kyra Anderson and Me

I’ve been to a few autism conferences in my time since Adam was diagnosed in 2003. The ones I found most helpful to me in those early days were the ones where many autistic adults “ran the show.” There was nothing more helpful to me at the time in trying to understand Adam, autism and the future for us both, than in meeting adults who were living their lives successfully — non verbal typists to wonderfully verbose Aspergians. I learned from everyone that there is a future for autistic people except that the issue for autistic people was that they were often not invited to speak at autism conferences for parents, or invited to participate on policy panels regarding the treatment and services required for autistic people.

As I said, I think this helped me become a more settled, accepting parent. I avoided parent conferences after that primarily because I was avoiding negative messages, fear and stereotypes perpetuated largely by non autistic “autism experts.”

A couple of years later, interested in pumping my writing life “up” again, I attended this year’s Blogher Conference in New York City where I met many autism mom bloggers that you may already be familiar with:

This Mom
Niks Mom
Thinking Guide to Autism
Susan Senator (although we crossed paths this trip)
Stimeyland
We Go With Him
Love That Max
MFA Mama
Sneak Peek At Me
Have Autism Will Travel
Pixie Mama
The Betty And Boo Chronicles
AspieAdvocate

Squidilicious

(If I missed a blog, can someone please post it in the comments?)

At the autism panel I was really overjoyed at the outcome as I have never heard parents so contented with the state of autistic being. For me, this is a real change from parent conferences I attended in the past. Perhaps this is the next step in the history of autism acceptance within which we are all participating and creating.

There was discussion about the isolation as an autism parent — that the diagnosis of autism, we were told, is “life-ending.” Then, there was laughter in the room.

Yet, I acknowledge that I did feel in the beginning that I would be all alone in this. There is some truth that when speaking to others about autism, it is sometimes tiring in that we are always educating others and thus feeling separate from them, not to mention some missed coffee klatches because our lives are different. Feelings of isolation are very real, and yet, I was wishing that every newly diagnosed parent and child (and I will say parent and child because it effects both so deeply), could listen to this kind of presentation. Maybe newbie autism parents would feel a sense of relief that we all so deserve.

My favorite line was from a mom who described her child having fun and being happy to which she responded with ironic laughter, “oh isn’t it so sad, there’s the misery.”

There was no misery in this autism room in NYC, We’re no psychedelic dreamers. We have our feet on the ground, and we’re still smiling.

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After being a little overwhelmed with goodie bags (and I’ll note that I have no need for the stuff so if someone is here and wants mine….come and get it), and loads of women fretting in hallways that Twitter was down for a bit today (I went for a walk), I’ve settled into my hotel awaiting tomorrow’s autism blogger panel and meeting some bloggers I’ve known for years but have not yet had the honour of meeting.

I am also quite interested in the other human rights bloggers that are here.

Keep ya posted!

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The Autism Acceptance Project is the subject of an upcoming program with myself and blogger/Professor Kristina Chew on Voice America’s Family Caregivers Unite with Dr. Gordon Atherley. If you are so inclined, it airs August 3rd. Click here for the link

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 – 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.

—–
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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“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

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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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One of the most talked about issues in autism is the issue of verbal communication or “functional” speech. That is, speech that is reciprocal, social, conversational. For Adam, there have been major challenges in this area and he has had to use augmentative forms in order to communicate many things, yet for the person who understands his communication, he is communicating all the time. I do not find it too difficult to understand and the one shortcoming I may have is the tendency to feel frustrated when he is — when he cannot get a more complex message across.

Adam turned eight this year and much of this is beginning to change. Adam began to talk in sentences, began to show me things and started to become “the teacher,” in the sense that he would test me on the things he wanted to talk about in books. He learned certain concepts such as what something was NOT as opposed to what it was, among other concepts.

There are a couple of things I want to write with respect to progress in communication ability, quite unscientifically, in this post, for I have not yet found some good citations to support my theories about autism and development. So take it for what it’s worth and perhaps you may see some more of my posts deal with this — with citations.

I’ve been reading how to teach philosophy to children through children’s books: Big Ideas for Little Kids: Teaching Philosophy Through Children’s Literature, by Thomas E. Wartenberg. When we refer to teaching “critical thinking” to autistic children, it usually has to deal with teaching the more functional types like putting puzzles together or teaching Feature, Function and Class — for those familiar you know what I mean. These are the basic skills we believe are absent in autistic children because their very expression is difficult to manifest — be it for attentional reasons or motor planning issues, or both.

We do not address for the “profoundly autistic,” “severely autistic” or any autistic child, for that matter, often enough, how to read books, how to question and how to think abstractly because we have decided that autistic people learn literally. While this may be in part true, we miss an opportunity to help along the critical aspects to being human — the ability to question. I’ve read many a time how we wish to teach some flexibility in thinking in autism. To me, teaching through books and by taking a lead in creative ways to view things from different angles is not only an exercise for Adam, but also for myself. We would all stand to gain from working to think in ways that may not be familiar to us.

We are more often concerned with our children knowing how to read the words (certainly this is the first step to reading at all). We do not learn how to talk to an autistic child who has difficulty with that reciprocity, how to really push forward, even though their manifestation of understanding is not what we expect. In my view, I feel it is dangerous to assume that Adam does not understand as much as it is to take for granted that he can just learn the way a typical child does. Yet all those years of puzzles, functional skills and communication issues makes me worried that Adam is missing the most important component of life learning, that is, to ask questions about everything. I’m quite sure I will be writing more about my in-house experiments here.

That said, I have a short story to tell. With some severe weather hovering around Toronto, there was a downburst, or a tornado. Both Adam and I enjoy watching the weather reports. With bad weather, we are glued to the TV. I was talking about funnel clouds and how they are dangerous.

“Why?” Adam asked.

“Because they can rip down houses and trees,” I said.

“Why?” he asked again. I am thinking about a three-year-old I once knew when I was an older kid and how every answer to a question he had ended up with yet another “why?” Like that, the conversation went on a bit between Adam and I. He kept asking me “why?” until I ran out of answers!

For a typical child, asking “why?” is expected. For an eight-year-old developing autistic child, it was another one of our milestones.

With that “why?” also came a series of sentences and conversations this week. With those conversations came difficulty falling asleep and some body jerks. Also interesting that along with an increased in verbal expression came an improvement on his fine-motor skills at the dining table as well as gross motor skills I noticed while watching him outside climbing structures I’ve never seen him climb before. Could this be a reason for the sleeping issues? Could his body be a-buzz?

Again, I am making a possible correlation that needs to be tested because dad let him sleep in over the weekend (school was out) and this is reason enough for not being able to go to sleep the following day and, perhaps lack of sleep and other frustrations lead to more body jerks. Yet I also wonder, only because I’ve seen it before, if sleep issues and body jerks have to do with an increased output of communication and other “manifestions,” — overall “progress.” So often we view “issues” as a result of “delay” and “behaviours” and we label it as if it is something we have to get rid of or something that worries us. Yet, with this example, Adam is trying so hard to express himself and his body may be following him as it attempts to process the steps we have taken for granted. If we take a view that such preservations, behaviours, sleep problems might have to do with processing, progress and development, how might we address and teach autistic children differently?

It’s something to think about when we study autism and when we rethink the, perhaps, very “normal” path of autistic development.

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I was in Yorkville last night when police told us to get out as rumour had it that protesters were on their way. It was probably one of the more anxious moments of my life as I remembered the Seattle tragedy.

John Mayer sings a good song about Belief. It’s time to listen again. I recommend listening to the song while playing the videos of the protests underneath.

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You have to hand it to kids. Just when I forget to laugh, Adam comes up with something to make me laugh about.

Like all boys his age, the proverbial fart joke is something hilarious. What makes the fart so darn funny? I remember my step-children, now all adults, in the backseat of our Durango farting and laughing. “Whoever smelt it, dealt it!” They would giggle, sounding like hyenas in the back seat between whines and squeals, between farts and trying to pinch and smack each other. Of course I laughed. The child’s giggle is infectious. The fart is eternally funny. It takes pretense back down to the level of human.

I was reminded of all this — what seems like eons ago now — when Adam farted this morning before school. “Oops you farted,” I commented and his giggle, the one he never wants to end, ensued.

I suppose I’m writing this not just because farts are funny, but because such toilet humour does not get lost on Adam — the autistic child who supposedly doesn’t get humour. It seems so incredible to me now these vast generalizations are so not applicable in the autistic people I meet.

While I’m not sure what this really says about me, tell me really if this doesn’t make you laugh. It makes Adam laugh!

Click for fart sounds here.

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