Estée KlarThe Joy of Autism

Adam and I went to see Seussical at Young People’s Theatre in Toronto. Adam likes the theatre more than he does movies.

I’ve always refused to stay isolated and Adam doesn’t like to be, either. He likes people and outings and even though we’ve been through ups and downs of anxiety, we tend to overcome our obstacles — our own and the ones that seem outside of us. But as usual, I digress.

Adam was his usual attentive self to the play. There were a series of questions afterwards and the theatre writes them out in the program for parents to work on at home. I also sent the questions to school today. I always wonder why there are not more field trips and plays for autistic children. Thankfully, Adam is going to the library a couple of times a week.

Many people don’t think autistic people understand or “get it,” and that taking them to a play or an outing would be a useless endeavour– one that would require too much effort, or parental fortitude and heartbreak to withstand stares. I’ve never been to Young People’s Theatre when a young person doesn’t make a whoop or two. Adam’s not yet a whooper, he’s more of a giggler. Perhaps because I see some parents of typical children sternly turn their disturbed heads (yes, my perception and interpretation…my bias), I refuse to look around. It’s not that I don’t want to. I’m actually thinking to myself hey, who’s the cool kid having the really great time!

Adam’s eyes were glued. His grin was wide, his eyes beaming. It feels so good to watch him enjoying himself. Since he’s been young, even though he has real challenges with expressive communication, he’s given me fantastic glimpses into his perception and understanding. His very attention to the play was proof- positive. Today he wrote me an email (the school lets him email me). One of his teachers asked him what he did on the weekend, not knowing the play at all. Adam replied by typing “elephant sat egg.” Horton was the guardian of the egg. He would not leave the egg or abandon the Whos on that little speck of dust in this mix of Dr. Seuss stories, no matter how awful and skeptcial the Wickersham brothers and other townspeople are to him. He endures the abuse, the naysayers, the people who call him a chump.

I know I have to keep working with others to show how to get more typed communication out of Adam and not give up. At the same time, I’m also thrilled that people are trying and doing. I know I need more patience. I worry and wonder how many hours in the day autistic kids are working on labels, mands and putting together Mr. Potato Head. Even though practice is always essential, and the goals are about attention and things other than the label or putting together a head, the work it takes to collect the expressive communication is big and we need to focus more on exposing autistic kids to interesting material, even when we don’t get immediate reward of a child’s recognition. I think our kids should be asked more complicated questions and working on really interesting age appropriate material. Of course, there’s also the fact that the stuff autistic kids are interested in can seem boring or useless to the rest of us. We need to learn how to nurture these interests. Also beware of objects that autistic children become attached to. Clinginess to baby books doesn’t mean an autistic child doesn’t want to read chapter books. I am reading Diary of a Wimpy Kid to Adam (he giggles), and have no idea yet what he’s getting from it. Although I do know, as but one example, that when we get wild weather, he’ll reach and start reading a book for teens on weather systems. The baby books are a form of familiar for Adam. He uses them to comfort himself and to create order in a world that can often be overwhelming. They don’t indicate what he’s also interested in, or what he’s capable of.

Readiness is essential but there can also be many opinions on what makes an autistic person “ready.” Is it the ability to sit still, act normal, attend for long periods of time? If so, an autistic person may never be deemed totally “ready.” If these are some of the prerequisites to “readiness,” how far held back is the autistic person who’s otherwise sopping up so much in the environment? Adam got his musical notation, to his music teacher’s surprise, very quickly. Learning to “attend” is a social “norm” imposed to people who find that really challenging. It’s not that I don’t think Adam shouldn’t learn that, but it’s not the only thing he needs to learn. Adam needs to learn things that interest him, and like other children, we don’t know what interests our children unless they get exposed to things. His movement and activity is likely the way he learns best, and despite my repetition in life and here on the blog, he is often treated like that round peg being squeezed into a square hole, no matter what my beliefs.

Help, hello. Is anyone there? I’m trying to write with the greatest of care. As I convey ideas about Adam over and over, we need to settle him down safe, on a soft bed of clover.

I guess you can say I’m holding on to this egg.

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Adam sits at the kitchen counter. I don’t have a proper table in my kitchen so he sits on a high stool at the counter, his chest meeting the edge. It used to be that his chin met the edge of the counter just a year ago. He’s grown.

It’s an early winter evening and the sun has gone just set. As usual before dinner, he’s eating sliced green and red peppers or cucumbers. “Vinegar!” he implores with a firm voice. His other choice condiments that go with everything are mustard and Tabasco sauce. I stand on the opposite side of the counter because I like to see his face, as if we were sitting across from each other at the table after a typical day. Even though we don’t have deep conversations verbally yet, we do have meaningful exchanges. I’ll ask “Adam how was your day?” and he might say, “It was fun.” Unless I bring out the typing devices, that may be it for our verbal social exchanges. He still needs prompting to sit down at his device and “talk” to me. I talk to him nevertheless and I’m okay with not always getting a reply back most of the time. We can discuss what he wants for dinner without the devices and he has chosen spaghetti this night. I am unpacking what’s left over from his Toy Story lunch box. He left the raisins, I sigh, and ate only half a sandwich. I continue to mumble about the uneaten parts of lunch and look at him. He searches my face.

“Ffffff…” His eyes turn mischievous. “Ffffffffuck,” he says tentatively, looking straight at me with a wily grin.

“What did you just say?” I ask, trying to be stern, but the way he looks into my eyes is something a parent with an autistic child doesn’t take for granted. I know I should be scolding him, but I am surprised at what I think I heard.

“Fffffuk,” he says again ever so quietly, now showing his big front teeth.

“Adam, what did you say?” I ask again. “I hope you are not using a bad word.” He’s still smiling the oh-yes-I-am, smile. I’m not pulling off my proper parental serious-face and tone well. I try to hide my laughter. “Adam!”

“Fick,” he changes his word deliberately and giggles. Shit, I can’t help giggling too.

And there it was. My nine-year-old testing out a bad word on his mom to see what she was going to do about it. So much for teaching my nine-year-old socially appropriate language.

:)

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I haven’t written in a long time. Since we changed schools I decided to focus solely on Adam. I’m also very cautious of what I write about, because while it’s important for me to do this, it’s important to protect Adam’s dignity as he is maturing fast.

We made the official switch to an ABA school. Frankly, it was getting exhausting trying to find an inclusive school to support Adam’s needs. Adam needs understanding, lots of structure, lots of practice for the work that’s difficult for him, and people who greet him every day with a wide smile. I have been struggling on how to write this because I’ve been so critical of ABA. I have come to peace with this decision for now. We didn’t have good early experiences. I’ve learned that it’s not just some ABA therapists who didn’t accommodate or treat Adam with respect. Understanding autism, accommodating, accepting isn’t reserved for the non ABA teacher. Maybe times are changing.

Adam has Occupational Therapy equipment and goes to the gym every day at his school. He gets his sensory breaks. He uses a Vantage Lite and now the iPad — from the notebook, to text-to-speech for typing, which he is doing more independently. He also enjoys using the Vantage Lite. Adam also started using the Vital Links headphones which help him be able to calm his body and sit at a desk and do work. This works by choosing various MP3 music chips. He can sit and work and still hear and listen to his teachers. It’s a much better option than the Ritalin we once tried in his other school — a nightmarish experience.

After June, Adam went also to a new camp. We lost our aide worker of seven years. For the first time I had to let Adam “go.” I had to learn to trust that others would treat him well and I had to trust that Adam would rise to the occasion.

He did, although his new obsession with exploration and doors took over. He typed to me in the summer that “door is a question.” A question so powerful, in fact, that sometimes he seems to have little control over his insatiable curiousity.

We incorporated exploration time at the end of each day, with supervision. He was still adored at his new camp as he was at his older camp. Both camps are fully inclusive. He needed a bit more support after incidents at the end of his the year at his other school. I called the summer “operation calm down” as Adam was highly stressed and the door obsession began. As the summer unfolded, he calmed. By the end of it, his ability to speak reliably soared in ways we had not yet experienced. He was relaxed and happy and of course, we always try and type a little more each day at home since he got his iPad.

This was the biggest change in Adam’s communication — his verbal ability increased and between typed and verbal, I could trust that what he said, he meant. Instead of echoing or saying things he learned elsewhere, Adam began telling me real things and he still does — from how he is feeling, to what happened to him, and what he does and doesn’t like or want. Some days I will get an interesting full blown description of something I didn’t quite ask for, with language full of imagery that I have to interpret, which gives me clues into the way Adam sees things. I have asked the school to verify things I do not know, in order to test myself as Adam’s communication partner. I am always trying to ensure that I enable Adam by testing myself and watching for his cues. I am a work in progress.

Adam writes emails to me every day — something I still insist as part of reciprocal communication (and a safety necessity in my view). Yesterday, he independently wrote me that his tummy was sick. I had to call the school to verify and the senior therapist ran down to check on him. “Isn’t this a wonderful call?” I said. Sure, my son could have been barfing, but hell, he could tell me! Adam is assertive when he can speak. I can see more clearly now that he has a fighter spirit.

Yesterday, Adam was unusually upset in his OT appointment and I had to intervene. I brought in the iPad and he typed “I want dinner!” As he typed, he said the sentence before he finished typing the word dinner. When Adam is anxious, like so many autistic individuals express, it can be harder for him to access language. Sometimes it’s not, so there are no clear cut “rules” here. Yet, as soon as he was able to have access to the device to type, he immediately calmed down.

The same thing happened this morning. He was quite upset. I brought out the iPad to type on the text to speech application, which he really likes. I asked him if he was feeling tired or sick. He wrote back, “No school because I tired.” He smiled because he obviously feels more empowered when he can tell me what he really wants to say.

I get asked a lot from parents on how I taught Adam how to type. Believe me, I was criticized by people who believed that supported, or facilitated communication, was a hoax. I simply kept it up (I started when Adam was around four years old). Now Adam can type unsupported most of the time. My priority with his school is following up with is literacy and unsupported typing. At home, we play poetry games and type in the nuanced ways that are difficult to explain without writing it out in a longer essay or post. It is always best to see Adam and I doing this a few times to see how varied it can be.

Today, I promised myself I would write again, and I’m enjoying writing about Adam’s writing, which is much more interesting than mine. Sometimes I feel that I am climbing a never-ending mountain when I say it is Adam’s neurology, not behaviour, that make it difficult for him to communicate and do tasks consistently. So I stopped writing and talking for a while and just lived our lives. This is one of the reasons I had to take a break. I needed to be with Adam, go through all the changes, and just be.

So far, I like what I see as Adam happily runs to the school door every morning. We went through some difficult days with certain ABA therapists when Adam was a baby. It is now, as he’s older, that I see that consistent practice is important and helpful to him, as well as a structured day that he can predict and have some control over. For Adam, I am still convinced that the early engagement was very important through a play-based method. He always had a combination of methods that are currently out there. Being with other children was wonderful. I wish he could still be with all kinds of children, of course, especially since he typed a couple of weeks ago, “I want friends.” But when schools do not fully understand and accept autistic kids, I had to pull back and ask myself where Adam might be treated better. In this case, he’s in a place where the staff seem open minded and we work together on planning Adam’s programs and various teaching methods. Adam’s extracurricular activities include now skiing, a Friendship Club, piano lessons, and an art class.

I am hopeful because I know that Adam will progress because of maturity and because of finding the environments, support and methods that best suit him, and these may or may not change. I am also hopeful for myself that be it good or bad, writing and talking about Adam in respectful ways is still very important to how I support myself as his mother. Both Adam and Estee find writing really important, and I know Adam would tell you so.

Every parent has a dream and an expectation for their children, and expectations never quite turn out how we envision. I always had a dream that Adam and I will tour around and he will be able to tell you many things on how he grew up and learned all by himself and I can talk about the journey I took to try and help him. I can imagine Adam and writing to each other, because that’s what we are doing! Maybe soon I’ll find the energy to show you. I believe Adam the fighter will want to show you for himself.

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About once a month Adam cannot sleep. It’s so regular, in fact, that I’ve come to call it our “monthly trip to Europe.” The time zone change would feel about the same.

So it was we had another one of those nights last night. It’s been a bit of a crazy week — I just returned from Costa Rica and am trying to pull myself back together. Adam also had some vacation time with me down south and then spent the rest of the time with his father. He returned to me on Monday and I was expecting him not to sleep on the first night of his return home — not the fourth.

Last night, we also played a game of I Spy. We used one of Adam’s books for this. For those of you who are not yet aware, Adam is not a fluent talker. I was quite surprised that we could play this game back and forth for about thirty minutes.

“I spy with my whittle eye something that dances,” he said in his tiny staccato voice, so soft like a whisper. While Adam has typed a few sophisticated sentences before, we’ve rarely had such interchanges, let alone ones where he’s asking me to guess the object by naming its attribute.

“Is it the ballerina?” I asked him, pointing to it.

“Ballerina, yes,” he replied.

Maybe his head was dancing for the rest of the night. Dreary eyed today, I’m still so very thrilled about the interchange.

A belated Happy New Year to everyone, by the way. I tried so hard not to blog while I was away.

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“Turn it off!” I had been watching some old videos of Adam before he was even two years old. Adam, now eight-years-old, stood in front of the television and watched for two minutes intensely before he told me what to do.

There are two therapists in that video, in front of him talking fast and loud. He is sitting in a chair and they insist that he stay there — he small enough that every time he tries to escape they physically replace him onto the chair. The video begins with Adam crying, squirming and trying to get away. He is so small, such a baby. He is saying many things, although they are hard to hear because the therapists are talking so loudly compared to his forming, warbled articulation. As one of the therapists replaces his tiny body in the chair, she tickles his stomach.

“Don’t,” I hear him say in a super tiny voice. I hear him say it now re-watching these, but I may not have heard it back then. I may have not heard it in the frantic effort to get Adam to do and say what the therapists wanted him to say. I would have not heard it over their loud voices.

I am watching these videos six years later, as Adam has developed and changed so much. I feel we have very much entered a new phase of life together, a new phase of understanding our lives as an autistic family.

Adam then went to his Vanguard device after telling me to shut off the TV. “I am uncomfortable,” he pressed. I suppose I can say, said. We call it his talk box. The Vanguard device, which is a series of pictures and words can be programmed to make sentences. Things like verbs, feelings, activities are all categorized on it so Adam can tell us many things. Sometimes Adam can type sentences on his computer, sometimes he uses the Vanguard and sometimes, especially this past weekend, Adam can talk. Adam talked more this past weekend than I can remember in his lifetime.

I have set out to watch those videos on my own without Adam present. As I watch them now, I am highly disturbed. We made him sit so young, and forced him to watch the therapists. Although this was NOT a strict ABA program, we did attempt to “programme” Adam in an ABA format. The therapists talked, they wanted him to answer, they dangled coloured circles over his head so he would repeat the colours, blew in his face, repositioned him on the chair — all at a roaring rate. I cannot imagine how completely overwhelming that experience was for Adam.

All I had in the beginning was ABA therapy. Then came along RDI (Relationship Development Intervention). I thought I kept helping Adam better each time I learned about something new because no one offered us any other solution. While I tried to follow my instinct, what was available to us wasn’t keeping pace with the values I was forming about Adam as an autistic person. Still, Adam was forced to “conform” no matter how much we said it was to “engage” him. Later, we became more adept at involving ourselves in his games. Later, we became quieter with him.

As Adam’s mother, I sometimes want to cry when I watch these videos. He was bombarded. In no way was he respected as an autistic person from the get-go. A couple years after that I definitely learned more and tried harder. Yet I wonder, since we are still talking about finding genes in autism and intervening earlier, what kind of life experience our autistic children will have and remember, when they are programmed to be typical.

I find it so ironic that Adam talked the most he had in his lifetime this weekend, and he told me to turn off one of those “early intervention” videos. I suspect he does not feel good about it at all. What makes me feel so guilty, because I love Adam so much, is that even though I searched for ways of assisting him while trying to respect him, he may have not been in those earlier years when he was so vulnerable. He couldn’t really communicate in words then. He has severe difficulties, even now, to do so consistently. As Adam becomes his own self-advocate, I just found it so striking to have this juxtaposition between the old videos against the Adam of today. Even back then, just because he wasn’t talking, he was still a person. I suppose I could say he was ignored like the moment when he said in a voice so quiet, “don’t.”

I think if someone had shown me this when we received the diagnosis, if autistic people could recount their stories and be available to all “new” autism parents, my life may have been calmer and Adam may have had better supports that accepted him as autistic. I write this with forboding, wondering what kinds of early interventions are being concocted for infant autistics. Certainly, I changed the approaches after those first two years, and he became happier for it. He has had many challenges, but he is also now talking. As he does so, while it is nice to know what our children are thinking, I can tell you it is not a solution. It is not the Holy Grail. We will have many years ahead of dealing with Adam’s unique way of functioning in the world, and I don’t always expect it to be easy. Communication is important. Acceptance is vital.

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Tonight has been a most remarkable night. Adam has probably talked the most he has in his lifetime.

I have no answers why. We’ve supported him, taught him, spent six years fine-tuning, changing and adapting things. By “things” I mean his therapies and education, devices, strategies, habits, you name it. We made sure he didn’t do things too soon, trying to be attune to Adam’s needs, which have been many. His needs keep changing. It’s a journey. It’s a dance where the steps keep changing, a jazz troupe with a new riff or musician every few weeks. We aim for consistency yet nothing stays the same. Adam never stays the same.

As I said in The Autism Acceptance Project video a few years ago, “when a children are happy, they can learn.” Sometimes I had doubts. Should I have pushed Adam harder?, I asked myself after he lay sound asleep after a difficult day, or a day when I was challenged by others who insinuated I was not doing enough for my child (while not really knowing us). I’m not here trying to give myself kudos or to dismiss the choices of others. Yet, there is a part of me tonight that is proud that I stuck to my guns by doing what I felt was right for Adam as well as my needs and values as his mother.

Our lives, as that saying goes, are comprised of the choices we make. I’m quite certain I’ll continue to make mistakes like all parents, but overall I’ve always believed that being as sensitive to Adam as he is senstive to his environment and to others has been a necessity. By viewing it as such, I made the choices accordingly. For those of you who don’t know us, this started Adam was only 18-19 months old. By the way, I expect my ideas and parenting style to be continuously challenged. It seems to go along with the territory of being a parent. It is gratifying that once in a while we get some kind of affirmation about the choices we have made. That is what this blog post is, in part, about. But really, it’s more about the need to be sensitive and to be open to change as well as our ability to adapt. These are the “things” I have to continuously re-learn. I hope I’ll get better at it.

Adam has had quite a year, not to mention years of going through “people” in his life because of the education and support he has required. His life has been pretty consistent, mind you, but not without upset, as life is for everyone one way or another. This year, he began a new school and the change took a few weeks of getting used to. He lost his words and he engaged in more “OCD” or ritualistic behaviour, desperate to create order out of chaos.

Over the course of four weeks, this has abated. He still has some difficulty letting go of some of the rituals that he began as a result of the change.

“I can’t stop. I can’t stop,” he told me tonight after I silently redirected him towards my bed. Too many words from adults can be irritating not to mention too many “no’s.” He has taken to getting in and out of two bath-tubs in my home. He wasn’t that happy with me, but the crying was brief, about two minutes. I turned on the soft music, helped a rash that was bothering him to soothe Adam a little more, and we just hugged. “I can’t stop,” he said again calmly.

“I understand you are telling me you can’t stop,” I repeated so he would know that I was listening. His body relaxed and he lay deeper into my arms.

That was the only challenging part of the evening. The rest was a night of Adam telling me that he went to the zoo today, that he saw a Gorilla and a Lion, that his rash was “itchy…it is bothering me,” to what he wanted to eat, in full sentences — not the usual two or three word phrases. On his walk he said things like, “I want to go this way,” or “I don’t want to go there.” Perfectly. In the evening he asked for certain lights to be turned off. When I was getting it wrong several times over (there were a few lights on and it took a while to figure this one out), he pointed towards the hallway. “Turn the light off outside!” he said forcefully. Phew. Glad I finally got that one right!

He was asking for books unseen (therefore unprompted… all of this was not prompted in any way), and we read quite a few, of course ending with Dr. Seuss. Tonight was Horton Hears A Who …”a person’s a person no matter how small…”

Change is hard. Change can be good. We can’t stop change. Finding the right time to teach certain “things” has been a challenge because Adam is bright but very sensitive. Knowing when to push and when to back off is based on the uniqueness of Adam, not solely on Adam’s autism. I thank the team who keep sticking with us on this remarkable journey.

A remarkable, notable evening.

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I really like what Temple Grandin is doing in many ways. I like that she supports different minds and describes very simply and concretely what autistic people need and might be able to do as work.

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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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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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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It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).

There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

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The nice thing about art is that it is a language without words. It’s why I believe strongly that it is an important (not nice and trite, isn’t-the-Autie-a-genius) approach to appreciating not only how autistic people may see and develop, but of course of understanding humanity — a very broad statement, I know, but art is a way to bridge the barriers of looking at people with neurological differences as “abnormal,” “retarded” and the like.

It is also highly ironic that I write about art and that the art world seeks so many words to critique and analyze it. Yet, at the end of the day, we have a gut response to art before we have an intellectual one.

I was thinking about this as Adam has turned to art. This is not just peripheral observation…it goes deeper. Adam studies all the elements of things with ferocity and concentration. He will hold any object in his hand — even a part of an object, turn it around and study it, tap it and consider all of it’s physical properties. He may or may not label it, as he has done since he was eleven months of age (labeling, that is), but I consider that his sharing in this manner is simply his way of sharing with me because he has trouble with words. Yet, his understanding goes far beyond the label.

W.J.T. Mitchell, in his essay Visual Literacy or Literary Visualcy? (excerpted from Visual Literacy edited by James Elkins) asks how seeing is different from reading. “Even more interesting, what would happen if we reversed the positions of tenor and vehicle in the metaphor, and treated reading as ‘tenor’ — the thing to be explained — and vision as the vehicle that might help explain it? What would happen, in other words, if we thought of our task as one of research and teaching in reading, based in models drawn from seeing and the visual system?” (p.11).

It is in this vein that I believe we can begin to explain our words about autism and challenge our very basic assumptions. For instance, consider the two drawings below. Adam, at the age of 8 has fine motor planning difficulties. It is very hard for him to hold a pencil or crayon, but in the first drawing one can see it’s coming and that he is trying extremely hard to express himself.

The drawing beside it, also a Lion, was executed by a same-aged “typical” peer. By contrast, one can see the marks in this drawing made with strength and certainty whereby Adam’s drawing seems a little tentative and soft by virtue of his motor planning difficulty. Take another look. Adam took great care and time rendering that drawing. So much so, he even walked away, came back to reconsider it and lightly put the finishing touches carefully on the tail several minutes after it seemed finished. It was so lightly drawn that it was difficult to photograph. Look at the perspective and how he tries to implement it. It is not a flat drawing. He can see how the body has several dimensions. Compare it to the “same-aged typical peer” drawing — wonderful in its own rite but by contrast, there is, as of yet, no conception of perspective. In one drawing the earth is round, in the other, flat.

Adam's "Lion King"

A drawing of a lion from a same-aged "typical" peer

It is interesting to me to watch Adam’s “visualcy” manifest. It is interesting because he does not fit into any developmental mold. While his hand his light, he is ahead of the curve by way of his perception. One might mistake motor-planning difficulty with Adam’s “retardation,” as it was formerly labeled. Now how dangerous is this when we consider how to teach an autistic person? What assumptions about his intelligence are we making? When I think of schools I get extremely nervous about moving him too slow or too fast. One simply has to SEE.

——

Reference:

James Eklins, Visual Literacy, New York: Routledge, 2008.

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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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While Slade is using the Dynavox in this video, I have to attest as we prepare for Adam’s new device (which will not be the Dynavox but a similar device) that this can really change your child’s life. I am so excited that we are entering this new phase of his life soon, and we have done it with the help of others who are experienced in this field.

It takes time to teach the child HOW to use the device and I have to admit that having Adam use the Qwerty board in preparation for receiving this device, it does help with the navigation. One can begin with low-tech options to prepare a child for such communication including PECS (Picture Exchange System) as well as using computers. Adam does most of his school work on a MAC computer to-date, and he has used the Alphasmart Neo to type because it is easy and lightweight. As Adam improves his reading/comprehension skills (expressive output I’m referring to as we never know the extent to what Adam knows), he answers his multiple choice questions one-hundred percent correctly. However, if Adam would be asked a comprehension question in an open-ended manner, he may not always answer correctly.

I encourage people to look at AAC and our institutions to take it VERY seriously in providing this opportunity for our non-verbal autistic children. It is one step closer to enabling their “voice.”

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Eustacia Cutler is the mother of Temple Grandin. With the recent HBO program lately on her, I returned to Eustacia’s book, A Thorn In My Pocket: Temple Grandin’s Mother Tells The Family Story.

It’s not all that easy to read in this day and age of watching our words regarding “struggle” and “fight,” so overused and sensationalized in the media to the detriment of autistic individuals. She uses these words more often although the tone of acceptance runs throughout, and this is a point I like to make often about autism acceptance: it doesn’t come without facing our inner doubts. If it were, it would lack real meaning and substance. Acceptance is something we must earn by facing them.

Adam spends some weekends with his father. This particular weekend, I caught the the stomach flu. Alone and sick (thus feeling particularly so…it always happens when we’re not feeling well), I yearned to speak Adam more often and to ask how his day went.  I was yearning for connection and I was also feeling guilty of not being able to take Adam back on Sunday night, when I would typically after a full weekend with his dad.  I wished to explain this to him, but Adam does not love sticking the telephone to his ear. In fact, he is exceptionally averse to it. My mother says Adam lives in the right era with all the technology that can help him. I’m not certain it is as good as we yet want it to be, but one thing’s for sure — thank goodness for Skype.

Skype is a recent life-saver. Adam’s dad and I have begun using it often and Adam holds his attention longer than using a telephone, as the visual is easier for him to understand. I can see him and he can see me and I feel a sense of huge relief. Then I wondered if Adam did too as he had to stay two extra nights with his dad because I did not want him to catch this outrageous flu. He loves his dad, but I wondered if he had natural questions about what was happening to his routine, and his mommy.

It was in Eustacia’s introduction that I tried to seek solace from this weekend. She said, “I’ve learned how the parents of autistic children suffer from a loss of their own sense of self. We all know that a baby needs a mother to know she’s a baby, but, equally true, a mother needs a baby to know she’s a mother.”

My friends and family, even my ex, all assure me that Adam knows I’m his mother during my more vulnerable moments, like this past weekend. I asked his aide today to help him understand that Adam would have to wait one more day to see mommy  — as I was hoping he could come home, but I am still too ill (do you understand how worried I was about this yet?). Adam texted me the following, I’m fairly sure, with a few reminders from his aide:

hi mommy

i like mommy

i like dinosaurs

mommy feeling sick. Feel happy. Feel better

i had chocolate after lunch

bye mommy

love you

Adam

I’ll take it. Yet I wondered today if Adam really missed me. It’s a natural wonder, I think. Even parents of neurotypical children might wonder the same when their children are with another parent, or with friends. We too need to receive love. We need these expressions of love that we have become so used to.

Later on Skype this afternoon and evening, I had a virtual “dinner” with Adam, thanks to his dad who put the camera straight on him.  After he became upset later in the evening, his dad put him in front of the camera. When he saw me, he calmed right down and smiled again. I spoke to him softly in my mother-voice, reminding him that I will see him again tomorrow. Again another smile; crying abated. That is the mother’s reward — her ability to calm her child. I completely understand the angst mothers feel when they do not feel they can appease their child’s pain or distress because I too have been through that.

So I am elated for it’s what I get — not yet the long drawn out conversations about what is happening, what may be confusing him, what he is excited about. Yet I think I can decipher it enough. We are communicating. Indeed, I need to remind myself of this in such times when I think of Adam as a person and his future, and my future as Adam’s mother.

“Think of me as your future,” says Eustacia. “I am where you will be many years from now, when you know how it all played out, when ‘what will be’ has turned into ‘what was,’ and you will have to come to terms with it.

Perhaps not in the way you thought you would, but you’ll no longer feel trapped in a morass of angst and guilt. You will have resolved your child’s future and your own. You’ll know you’ve given full measure, and the measure you’re given has never been pointless.

I offer you my story as a promise of that: an overall insight to carry with you as a talisman. And I promise that, in the future, to your surprise, your dreams will have changed and changed you.

I know that’s not what you want.

What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will. There was no magic; there was just doing the best I could. That’s the point; that’s the talisman.”

I’ve understood my son. Maybe he understands me better than I can know in the obvious, typical way. For certain, love goes deeper.

And it is louder than words.

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