First Week of Kindergarten - Conquered!

Congratulations to Aidan - he made it through his first week of kindergarten. And thanks a million to his teachers for helping him through it. There were ups and downs and challenges, but in the end, I think we both survived with flying colors.

Of course he took his ipod with him per the recommendation of his special ed teacher, but surprisingly, he did not even have to use it once. At least not that I know of - and definitely not on the first day when you'd have thought he might have to. The reason we send the ipod is because when he gets frustrated, or goes into sensory overload he can put the earphones in and turn on the music and it allows him to calm down much more easily. That little ipod was a great investment!

This week he learned about red (he can spell it and sing a song about it), squares and circles ("a square is a shape with 4 equal sides" and "a circle is a shape that is round"), and how to write the number one. Of course he wouldn't talk about it at first. In fact, for the first 3-4 hours after he got home from school every day, he wouldn't talk at all - only pointing and grunting, and if I tried to get him to talk, he'd scream at me not to talk to him. But Friday night he was a little talking machine, so I guess he finally transitioned.

The only other issue we had, and I'm not sure this had anything to do with autism, was that he didn't eat his lunch the first day in the cafeteria --- the teachers let him only get chips and cookies and beans, and he didn't eat the beans. Genius, you have to tell a kindergartener what to eat. Sorry, but really? I made it clear to the teachers and Aidan that he had to have one food from each food group and eat some of everything. I guess the rest of the week went better - they didn't email me after the first day, and he wouldn't talk to me...

We'll see how next week goes!

Bill of Rights for Parents of Special Needs Kids

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

((This is not mine, I found it on someone's blog))

The need for a new charity... and how to provide for it.

So I've been thinking for nearly a month now about how to start a charity for local children with autism. It would be a way to provide grants or scholarships which their parents could use to pay for therapies, treatments, tests, or whatever autism related things they could present a need for. I'm not sure how I would even get something like this started, although I know how to proceed once I do. Fundraising wouldn't be terribly difficult, holding charity auctions and walks and events, asking bands and bars and businesses to sponsor the charity. Having gigantic parties with local bands performing wonderful music and lots of people coming and donating.Giving those of us who would give anything to be able to provide some basic treatments and therapies for our children with autism, but who just can't come up with the thousands of dollars a month it costs, and whose insurance won't cover it, some hope and resources. So many ideas are bouncing around in my head. I'd love to get the ball rolling. It would be a simple bank account full of the funds to be distributed on a first come, first serve basis. The parents would only have to provide three things - a proof of diagnosis that their child is on the autism spectrum, a proof of monetary need, and some sort of information about the amount needed and what the treatment, therapy, or test is.

Thoughts, ideas, advice, donations?

From the inside out

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:

Autism is not an appendage

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

I wish my child did not have autism,

what they're really saying is,

I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Autism is not an impenetrable wall

You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.

Autism is not death

Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.

But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--

but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died.

You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.

After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."

If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

Jim Sinclair.

A growing imagination

One of the many things that contributed to Aidan's diagnosis of PDD-NOS was his lack of self-initiated imaginative play - or make believe. He could make stuff up that perfectly echoed whatever he was watching on a movie, and could sometimes play along with someone else's idea, but even that was rare and challenging for him.

Today, Aidan tore apart a cardboard box from a giant wall map we bought for him. He stuck the pieces on his arms, put his Optimus Prime mask on his face, and walked outside. "I'm a superhero," he told us as he ran out into the backyard. This time last year that would never have happened. Six months ago, that would have been unheard of. But today he made up the most awesome make believe superhero, and I could have jumped up and down with joy.

He still prefers to copy whatever movie he's currently watching for his play - the last few days it has been a noisy version of Cars. Right now his challenge to overcome is how to deal with the frustration that occurs when you have a plan for your imaginary story and it doesn't work. He will literally scream as though in pain when something fails to do what he had intended. Also, interrupting or even speaking to him while he's making believe can be hazardous to one's health. It's as if once he makes it into his own world, anyone who happens to speak to him is an intruder.

The leaps and bounds are amazing. I'm so proud of him, and I can't wait to see what he accomplishes next!

Alabama Autism Insurance Reform

Alabama still doesn't require insurance companies to cover treatments and therapies necessary to assist children with PDD-NOS or other autism spectrum disorders. If you want to help, you can contact your congressman (or senator or representative or whatever) and tell them how important it is to you that the children you know with autism be able to have equal coverage under insurance. You are also welcome to donate to a fund I'll be starting soon for Aidan to be able to try to get him into as many therapies as possible while they'll still be beneficial to him. This article is very informative:

Do you know Jack (and Jill)? State mandates coverage for autism

Updated: 08/01/2009 05:02:03 PM EDT

Jack and Jill have autism spectrum disorders.

At first, Jack's parents thought their little Lego-building genius had a hearing problem. So, they brought him to audiologists. The doctors plopped headphones on the toddler, turned on a set of mechanical clowns who shook tambourines, played drums and clapped.

The clowns resembled the "It's A Small World" dolls at Disney World. Jack tilted his head in the direction of the sound, but his eyes often looked passed them -- wandering to the scenery behind the clowns, to a seam in the wall or to some colorful detail, the zigzag stitching in their costume.

The good news was that Jack did not have a hearing problem. It was something else. Something that took another two years and other specialists to diagnose -- pervasive developmental disorder, not-otherwise specified. PDD-NOS.

The diagnosis from the Yale Child Study Center when Jack was only 4 went down hard on his folks. It was harder to accept a decade later with their feisty daughter.

In a note to her parents, the day care informed the couple that Jill "is always the last one anyone picks" when it comes to choosing teams. And that Jill "is oblivious" to other people's feelings, holds crayons with an awkward grip and has trouble forming letters, coloring pictures within the lines, even when she tries.

The evaluations of their children set Jack and Jill's folks back $9,200 and the therapy with a speech pathologist twice a week for seven years cost another $70,000.

Their insurance refused to pay a dime. The policy excluded autism services.

This couple was able to afford these services out-of-pocket. Having an evaluation early allowed them to gain special education services for both children.

Countless others aren't so lucky.

When families can't pay for these evaluations, children start out behind the eight-ball, and as they grow older, they drop further behind their peers because either their disabilities or the severity of them don't attract the attention of educators at the earliest point where offering them services will have the most impact.

The picture however for kids with autism spectrum disorders is about to brighten somewhat. Connecticut is joining a host of other states that mandate group insurance plans pay for autism spectrum disorder evaluations, prescriptions, physical, speech and occupational therapy.

That shouldn't supplant a school's obligation to provide those services to students. But it's possible that given the tight budgets that everyone, including school systems, operate on, it's conceivable that it may. Schools might balk at continuing to pay for these services.

"While there are some very on top of it school systems when it comes to autism, that is not the norm," says Hal Gibber, executive director of Favor Inc., an advocacy organization for people with behavioral, developmental and mental health issues.

"Most of them will want to do as little as possible until somebody requires them to do more," Giber says.

And that shouldn't happen here when this law has the potential of making the difference between giving kids with autism spectrum disorders the tools to succeed in the neuro-typical world. "Schools often ask the question what is 'educational'?

They are mandated to provide for children's needs in so far they these needs are educational," says Dr. Ami Klin, director of Yale Child Study Center's Autism Program.

"For children with autism spectrum disorders, we've been arguing -- and many school districts agree -- that education is more than reading, writing and mathematics. It's a child's ability to succeed in aspects of daily living -- to navigate social interactions, communications and move through and engage in everyday life in their community."

Making an autism diagnosis is tricky -- even for the trained medical professionals. At Yale Child Study Center, teams of neurologists, psychiatrists and speech pathologists meet with youngsters for two days straight and ask parents, teachers and caregivers to complete a two-inch thick questionnaire, surveying a child's development, medical history, academic and social interactions.

It takes hours for parents to complete, and even longer for Yale to analyze.

These days, Jack sometimes makes honor roll at his high school. He works hard for every A or B he earns. The only subjects that come easy are algebra and calculus because those are subjects where there is no gray to Jack. Something is right or wrong. And he doesn't have to read his teachers' faces or his fellow students for the non-verbal cues, like a raised eyebrow, a smile or a grimace.

At home, Jack's nickname is "The Capitalist," owing to his ability to negotiate high baby-sitting fees, impose an early return surcharge and devise novel, legitimate ways of making money.

For her part, Jill, a fifth-grader, is reading the fifth Harry Potter book. When she meets somebody new or goes on a trip, her parents have learned to "rehearse" what she can expect to see or do. Consequently, they repeat themselves a lot. The upshot is that eases anxiety all around. And it gives Jill ideas for conversations.

MariAn Gail Brown, a columnist for the Connecticut Post, can be reached at mgbrown@ctpost.com