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I wrote this for my brother who is having trouble accepting his son may be autistic. Others wished me to share it with others, so I am posting it here. It's the first post I've ever made here on WrongPlanet, and don't pretend to be the only one here who could have written this. It's for a lot of us and about a lot of us. This is my own story about my own son and me.

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Blemished Us

On any day it is easy to hold an unaffected child's hand and feel proud of the work you've invested to make them who they are. First steps are followed by other firsts: the day they climb on the school bus, going underwater, a home run, a kiss, a graduation. The joy of those moments can not be fully described, they must be known firsthand. They are natural moments that are the common privilege of parenthood. At least that's the common hope.

For some of us that's the Disney version of parenting, nothing but a tale of perfection as unrealistic and untouchable as the story of the gods of Olympus. For some of us the best story we dream of is one where our child isn't ground zero for the abuse of his classmates, or perhaps one where our love insulates them from the the world where "different" isn't a sentence of loneliness, rejection and personal frustration.

Life is different raising what others so "politely" call a "special" child. We do become isolated by other parents who don't understand while our child is derided and held in contempt by the children of those same people. Parents of "perfect" children look down their noses as they ignorantly wonder, sometimes publicly, how any mother or father could lack such basic control over a child as to keep them from the affects of their handicap.

At the pool, on the playground or in the store the parent of such an imperfect child measures "good days" and "bad days" differently from other parents with young ones in tow. Indeed, one has to first overcome the sorrow that "good days" don't take the same form as those enjoyed by carefree parents of more perfect children. And each child's "good day" isn't the same as another's. A profound victory might take the form of your son being able to pass by the packages of Hot Wheels without having a fit, or expressing a simple feeling of gratitude, revealing a glimpse of humanity beneath the layers of cold emotional isolation.

This life my wife and I share isn't easy. While four of our children navigate life with relative ease, the other one becomes mired in social and intellectual pits we never imagined existing. Simple changes of routines torment him and his body fails at games as simple as catch. Digging a hole in the ground or mopping the floor are monumental tasks for him while his peers move effortlessly through such mundane work. The sequence of loading dishes into the dishwasher must be written down and referred to several times, but that job will only be attempted if and when the need to have clean dishes even occurs in the first place.

All of that was ahead of us when we sat in an office that day years ago when we found out what was causing our son to be such a damaged individual. What brought us there was the fact that our son seemed to live to torment other members of the family. By every appearance he was a hateful, spiteful, obnoxious person that we didn't much like and could not exert much control over. How could we have four wonderful children and this one bad egg? What could we do to protect our other children, ourselves and even this child from himself? How could we possibly afford to pay the emotional and social costs of keeping him in our family when we were so emotionally and physically drained? Who had we become to have fallen to the depth of beginning to feel anger and disgust at the sound of his voice or the sight of him sleeping? He didn't look handicapped; he looked mean, and our hearts had grown hard towards him.

All of that gave way to shame and heartbreak when we discovered our son was handicapped. It was only then that we discovered how amazing our boy really had been all that time. His own craving to be whole was what lead him to try to interact, even though he couldn't begin to comprehend how to fit in. He hadn't been trying to bother us; he'd been trying to interact with us in the only way he knew. He didn't hate us. He loved us.

When he couldn't ride a bike like others he didn't take it out on us; he hid his fear and attempted other things, begging us like any other child does to watch his physical prowess. He talked about the same old things every opportunity he could get in order to feel human. He did everything he could do to be loved by his mother, father, sisters and brother, unable to see why he was driving us farther away yet knowing something wasn't right.

Our son was damaged and wouldn't be fixed. And I'd expected so much more than he could possibly give. I'd expected him to fly without wings, to sing without a voice, to paint a masterpiece without so much as a brush, and it broke my heart. It was one of the most humbling and shameful moments I've ever known. I wasn't simply broken for my son. Of course there was that, but there was also the realization that I had done so much to cause my son to despise me, yet he didn't. When he needed me to be there I had missed the signals. When I reacted to his behavior I had assumed we were working from the same definitions of social language. I had punished him and withheld the steady guidance of a father's hand because I simply didn't know better. And all he wanted was to be loved by his papa.

It was the moment I knew that as high as my other children would ever fly, as great a work as I'd ever done as a parent with them, my greatest accomplishment in life wouldn't be equipping them–it would be the daily effort of forming this boy who lived in more isolation than I could ever imagine into a man able to navigate his own life, with his own friends, capable of seeking his own joys and working through his own fears and failures without giving up.

Does it matter that I am kind to people when it's easy? Who doesn't do that? Who doesn't put his money on a sure thing? Is it a great accomplishment to be a fantastic father when the children have no significant problems? My own life of suffering would be meaningless if I turned around and was unable to show compassion to my own son who suffered his own hidden handicap, and my own attempts at being virtuous would be as empty as a huge redwood, fallen and rotten on the forest floor. If I hid from his diagnosis I would be the lowest sort of coward.

Just this morning my son showed me I've done so well by the simple act of giving to his sister his own share of a favorite food, when after some thought he said "You may have it. I'll have something else." For my other four to do this is kind. For him to do it is victory beyond explanation. It is a brilliant flash of color left by a carefully applied stroke to human canvas. A canvas I will never understand and to the rest of the world may always look odd and not quite right.

A canvas on which lays my most glorious work.

Don't mistake this for romanticism. I am human. There are moments I must escape, moments where I don't care whether it is a handicap that makes him press me harder and harder for the same thing he pressed me yesterday. I feel despair and anger that I have to hire a neighborhood boy to do a task he should be able to perform-but can't. I'm furious when I have to take a clean pair of pants to school when he wets himself yet again, or when he loses all control and screams how much he hates me and that I'm less than an as*hole. Sometimes I fail and am just plain mean, and I hate myself for it. When I give everything I have and the well is dry I don't have any choice but drill deeper.

But this is my life, and he is my responsibility. I wish he didn't have this thing called Asperger's Syndrome, but he does, and there's nothing to be had by dreaming of a different scenario. He can never be everything I wish he could be, nor will he be what he wishes to be- the perfect child. He's not that. He's my child. And I'm proud of him. Proud of him for things no one else will ever understand.

Together we will work through the problems that arise instead of living a destructive illusion that all is well. Step by step we will take each day as they come, working hard for what comes easy to other sons and fathers. We will get laughed at for our faults when we don't measure up to our neighbors. We will cry together when the glory goes to those to whom life comes easy while he comes in last. We will rejoice we are the best mules we can be instead of weeping that we're not pampered stallions.

And please, don't call me a wonderful man. Call me a dad.

You've journeyed far getting to know your son. I hope you are open to continuing that journey, to seeing his gifts more fully. He isn't broken, he's just different. Some of those differences create real burdens; others create gifts that you and I cannot imagine having, they are so far out of our own life experience.

I like to tell parents, when they get a new diagnosis, that they've been handed a set of keys. They now have the information they need to understand their unique child. And when they understand their child, so much that once seemed like a problem will melt away. You have to take a unique approach to parenting with an AS child; most of the traditional ways don't work. Knowing that makes a huge difference.

I think it was easier for my family, since once the diagnosis came up, and we completed our research, we were able to see the history of it in our families. Our AS child has never been THAT different from the rest, he mostly had the added burden of heightened sensory issues, and a joint co-morbid that is his true handicap. AS by itself, discounting any co-morbids, doesn't have to be a handicap; that is a relative thing, caused by an environment that doesn't take the time to understand this one unique person, and choses instead to fault them for not understanding the world. When you eliminate that barrier, you also eliminate most of the issues your child will face.

Just for reference, I think you'll find that Wrong Planet members tend to take a different view of the spectrum than many other parenting forums. It's less a problem to be fixed than a difference to be understood. You can accomplish a lot of positive in parenting an AS child simply by taking that approach. And avoid the need for things like medication, which have long term and unknown risks. Amazing how one can choose a drug, or accomplish the same thing by realizing their child does better if confronting the world wearing ear phones, or chewing on a straw ... It isn't always that simple, of course, but a far better approach than running first to the doctor.

I am also going to forwarn you, hopefully needlessly, that the many AS adults and teens who read this board don't always take too kindly to some of the words and phrases you've used. And, well, they tend to express that in the usual blunt, no holds barred, AS way. Remember that many of these individuals grew up with parents who never tried to understand them or help the world conform to them; it was always about them conforming to the world. You can understand how some resentment grew. Read those words for any lesson buried within, but please don't allow it to upset you. These are thoughts and feelings that I believe we, as parents, really need to know, even if they are difficult and often unfair or misplaced.

I think you are very brave to be so honest. And I am very glad that now you have the diagnosis and the will to go forward, teaching your son with as much patience and understanding as you can.

My parenting experience has also been different. Both of my sons have AS, so there were no other children to compare their behaviour with, and I recognized many, many Aspie traits in myself and my husband. So we never felt that sense of "brokenness" and we all love being "different". I have always felt that they were "special"...but in the good way, and been so proud of them.

But I have felt some of the confusion and frustration that you describe, and that I was failing as a parent and didn't quite know why (pre dx when we were using a lot of the wrong methods to teach and motivate them), and I have been angry at how unfair it is that my sons have to work 10 times harder at everything than the other kids, for poorer results. There are days when we struggle just to get through.

Then there are days when we soar, and I just can't believe how lucky I got in the grand lottery of life to be these two boys' mother! Like you said, we find so much joy in each small milestone and triumph, and their unique perspectives never fail to amaze and inspire me.

My sons aren't "blemished" in any way. Sure I wish life was easier for them at times...their allergies, the sensory stuff, the social difficulties can really suck! But the counterbalance is provided by their incredible passion for their interests, their creativity, their strong sense of justice and fairness, their individuality and their bravery.

Wrong Planet is an awesome place for learning and celebrating our Aspieness. Welcome.

Thank you for sharing that.

I wonder how your brother is coping now.

I remember our shock that a great-nephew had been diagnosed with autism, and the parents NEVER talked to us about it. I asked our brother-in-law why they hadn't talked to us and wanted our knowledge. Your daughter scares them too much, he said.

Well, their little guy talks and reads and all that good stuff, so they don't have anywhere near the worries we've dealt with our non-verbal daughter with autism plus. Our wookie has a happy ending in her own home with a companion care provider with lots of respite (why couldn't they give Me that much respite?). Her life example shouldn't be so scary any more. But they still have never said a word to us about their son's autism.

DW, you are so right about the words I used, and they have every reason to be angry if they feel I believe anyone with an autism spectrum disorder to be less than anyone else. If anything it is the families and friends of these people who haven't developed the inner strength required to make it through a single day of what they endure. They are, as I tell my son, "most cool."

We've lived with our son's diagnosis for nearly seven years, and we speak quite frankly about it. He and his friends are some of the most courageous people I've ever met and are nothing short of amazing. It's not them who tend to be the weak ones - it's us when we demand more of them than we have the right to expect. I don't think of my son as a freak, as a worthless person or less complete than anyone else. He's simply different and sees the world through eyes that aren't my own. He and his friends often surprise me with their tenderness towards everyone else who may suffer.

I hope folks don't take it that I think my son is inferior to some personal standard. I was writing about how we felt when we finally discovered what was going on, when we were ignorant of the cause of his behavior or what the diagnosis meant. When I said my son was "handicapped" I very poorly chose my words. I was ignorant when the diagnosis was made, and I've learned that "handicapped" is so far from describing AS that it doesn't belong in the same sentence. To be sure he faces challenges others don't, but if someone were to tell me my son was handicapped I'd politely tell them they don't know what they're talking about.

"Damaged" I will actually, and very reluctantly have to keep, and with great sorrow. My boy actually was diagnosed with congenital brain damage in his frontal lobe, which makes his AS even more frustrating. His brain cells are improperly insulated resulting in his thoughts literally short circuiting. This means that in addition to the normal AS outbursts he doesn't have the emotional brakes others possess, so we have to work around it. Logic is not his strong suit, either.

And if that weren't enough, he suffers from bi-polar disorder.

That being said, he is one of the strongest people I've ever seen. I could bore you to tears with stories, but the only thing I need to say is that he is very high functioning, is exceptionally gifted in working with low functioning autistic kids as well as being a magnet for disabled kids of all other sorts. He is kind to them, empathetic and is often the one telling them tricks he's learned to cope with his own many issues. While our other kids are the "super-achiever" types he lives as a social outcast, all the while possessing every bit as much mentally as his popular siblings.

Heck, I'm not busy feeling sorry for myself anymore. That was years ago. And if anyone wants to lay out the anger at my words I completely understand both the reason and their blunt way of expressing themselves. It's part of what makes them so likable once you get to know them.