My son has come a long, long way from where he started. At 3 he would have sudden and uncontrollable tantrums -- just out of nowhere - wham! Screaming, throwing himself on the floor, flinging everything in sight every which way. For no apparent reason, at least to me. I was always on edge, waiting, anticipating the next outburst.
We attended a special nursery for kids with autism, and things got a little better. I learned to anticipate some of the conditions that might set him off, and how to manage his outbursts better. I would have to remove him from the scene, hold him securely, and tell him his tantrum was "all finished". Those became the magic words. "All finished". Soon he would be sobbing in the midst of his meltdown, "All finished! All finished!"
As he got older, we were fortunate (for the most part) to have access to really good programs and teachers (god bless them!) in our district and out of district as well. He (and we) learned more ways to cope with the sudden explosions that seemed to mark Zac's days. "Use your words" became our new motto. Sometimes he did. Sometimes he didn't.
At this point, I adopted a saying that an autism dad in the nursery used: "Never let your guard down". It has proved invaluable. Because, just when you think you've got things under control. Just when you tell yourself he hasn't had a meltdown in weeks, and finally he's getting the Big Picture. Just when you're reaching around to pat yourself on the back, it happens. A call from school. A big scene in public. Banging and slamming at home. Whatever. It's like old times.
At any rate, you soldier on. You try new things. Some work, others don't. I honestly think that just the act of maturing helped in Zac's self control quite a bit. But I also see that even after all these years, there are those times when things don't go his way, or he has a big disappointment, his first reaction is to lose it. Thank the Lord it's not a falling on the floor, kicking and screaming fit. At 6 feet, 200 pounds that would not be pretty. Nowadays outbursts manifest themselves as huffing and puffing, maybe stamping his foot, a shout of disappointment or a quick storming around. Sometimes he will wail "Oh noooo!" Sharp words will usually bring him around.
And this I now see. In my frustration at his lack of self-control, I can see that it's not a conscience thing for him. He doesn't do this by choice. His initial reaction of anger is not one he chooses. This is just what happens to him. After years and years and years of classes and doctors and medications and social skills classes and whatever other therapies you can name, he can't help it. Even though he knows -- he knows this kind of reaction is inappropriate -- it just happens - Bam!
There has been progress. He has grown more tolerant of conditions that tax his patience. Waiting is still not one of his favorite things (but then, who does like to wait?) The outbursts usually last only a few seconds and he seems to shake himself out of it, is very apologetic. He knows this is not the right way to behave. But that initial zen moment of "doom" is still his go-to emotion. One that he still struggles to master.
And so, looking back to the earliest years, I can trace a path of progress. He is more aware of who he is, and his actions and their consequences. His efforts at self-control are, at times, heroic (at least to an impartial mother). He (and we) are forever learning and moving forward, and we will never stop. I am so very proud of him, and all he's accomplished. I look ahead to see what is next.
Saturday, September 29, 2012
Tuesday, September 25, 2012
To Be (Social), or Not To Be (Social)
I wish my son had friends. Not even a lot of friends, just one or two would be great. Like-minded guys (or girls) he could hang out with, go to movies with, play video games with, go for a pizza with.
Who am I kidding? I know with a fair amount of certainty that that probably is not going to happen. I don't mean to say it's hopeless, but after 20 years of throwing social interactions at him in the hopes that something would stick, I don't see it in the cards for Zachary. He is a solitary person.
But here's the thing: he likes and enjoys his solitude. Who am I to interfere?
When he was 4 or 5, we (the mothers in our therapeutic nursery) would always get together with the kids, pushing and prodding, having activities and crafts and outings in the hopes that we would all fall into the wonderfully normal life of normal parents and kids having a good time with friends. The grown-ups would have a good time, but we were constantly corralling our kids, directing their interactions, instructing them in how to play, to share toys, how to be with each other. It was fun, but exhausting.
In elementary education, Zac was in a variety of situations. A transitional kindergarten, a closed classroom, integration into regular classrooms with a "shadow". He mixed with a variety of kids with different needs, and some who were just regular kids. There were initial attempts by others to interact with Zac, but he would have none of it. And predictably, after a while, they left him alone.
We've spent thousands upon thousands of dollars on social skills classes for this child. And he has picked up some rudimentary social "routines" he knows are expected of him in certain situations. But he's picked up no friends along the way. From the age of about 8 he's been on medication basically for anxiety and some obsessive/compulsive traits, which required periodic visits to a very nice and somewhat understanding psychopharmacologist (shouldn't every child have one?). On these visits he would ask Zac about what he'd been doing, about school, his activities, if he had developed any friendships. Always with the friends.
And then on one visit , Zac articulated what I truly believe is his take on things. After the thousandth time of asking about friends, the doctor wondered aloud why Zac seemed to not want friends. And my son said simply, "Because I think they would interfere with my lifestyle."
And there it was -- like a revelation to me. Ah ha!
Zachary was never one of those autism/aspergers kids who desired to have friends, but could never figure out the social intricacies that opened the door to friendships. He was never at the window, looking out as others played, wanting to join in but not knowing how. Looking back, I realize I was the only one with the heavy heart as I watched my little boy all by himself.
Today, Zac is still a solitary being. But today, as when he was younger, he is comfortable in his solitude. Happy, even. He has interests and pursuits: computer, sports (he follows them all and goes to games with his dad), cars, movies, tv, books, video games. He reads the Post and Daily News. He's been taking computer courses at the local community college towards a computer support certificate and perhaps even an associates degree. He works per diem at a company that employs people with disabilities as a data entry specialist (their title, not mine), and once a week attends a "job club" at his agency that helps him troubleshoot any problems on the job. On good days I tell myself it could be worse. But, of course, it could be better.
I have come to an understanding with my son as to his status as an island in this sea of humanity. So, okay, you don't have to be Mr. Sociability (as if!). But you do have to learn to navigate and deal with other people in the course of your day-to-day life. You may want to be alone, but you cannot live entirely alone. You have to deal with people in a variety of situations: the store clerk, the waiter, your class instructor, the bank teller, the guy who cuts your hair, your family and relatives. Our dogs. And on and on. This concept is a work-in-progress.
And so it goes. Perhaps one day he'll turn a corner and things will change. He could find someone on the same wavelength -- a fellow autistic traveler; or a nice bossy girl who will take over looking after him. Maybe he'll get a cat! We all change as we grow and get older. Who's to say he won't?
I will remain eternally optimistic. For now.
Who am I kidding? I know with a fair amount of certainty that that probably is not going to happen. I don't mean to say it's hopeless, but after 20 years of throwing social interactions at him in the hopes that something would stick, I don't see it in the cards for Zachary. He is a solitary person.
But here's the thing: he likes and enjoys his solitude. Who am I to interfere?
When he was 4 or 5, we (the mothers in our therapeutic nursery) would always get together with the kids, pushing and prodding, having activities and crafts and outings in the hopes that we would all fall into the wonderfully normal life of normal parents and kids having a good time with friends. The grown-ups would have a good time, but we were constantly corralling our kids, directing their interactions, instructing them in how to play, to share toys, how to be with each other. It was fun, but exhausting.
In elementary education, Zac was in a variety of situations. A transitional kindergarten, a closed classroom, integration into regular classrooms with a "shadow". He mixed with a variety of kids with different needs, and some who were just regular kids. There were initial attempts by others to interact with Zac, but he would have none of it. And predictably, after a while, they left him alone.
We've spent thousands upon thousands of dollars on social skills classes for this child. And he has picked up some rudimentary social "routines" he knows are expected of him in certain situations. But he's picked up no friends along the way. From the age of about 8 he's been on medication basically for anxiety and some obsessive/compulsive traits, which required periodic visits to a very nice and somewhat understanding psychopharmacologist (shouldn't every child have one?). On these visits he would ask Zac about what he'd been doing, about school, his activities, if he had developed any friendships. Always with the friends.
And then on one visit , Zac articulated what I truly believe is his take on things. After the thousandth time of asking about friends, the doctor wondered aloud why Zac seemed to not want friends. And my son said simply, "Because I think they would interfere with my lifestyle."
And there it was -- like a revelation to me. Ah ha!
Zachary was never one of those autism/aspergers kids who desired to have friends, but could never figure out the social intricacies that opened the door to friendships. He was never at the window, looking out as others played, wanting to join in but not knowing how. Looking back, I realize I was the only one with the heavy heart as I watched my little boy all by himself.
Today, Zac is still a solitary being. But today, as when he was younger, he is comfortable in his solitude. Happy, even. He has interests and pursuits: computer, sports (he follows them all and goes to games with his dad), cars, movies, tv, books, video games. He reads the Post and Daily News. He's been taking computer courses at the local community college towards a computer support certificate and perhaps even an associates degree. He works per diem at a company that employs people with disabilities as a data entry specialist (their title, not mine), and once a week attends a "job club" at his agency that helps him troubleshoot any problems on the job. On good days I tell myself it could be worse. But, of course, it could be better.
I have come to an understanding with my son as to his status as an island in this sea of humanity. So, okay, you don't have to be Mr. Sociability (as if!). But you do have to learn to navigate and deal with other people in the course of your day-to-day life. You may want to be alone, but you cannot live entirely alone. You have to deal with people in a variety of situations: the store clerk, the waiter, your class instructor, the bank teller, the guy who cuts your hair, your family and relatives. Our dogs. And on and on. This concept is a work-in-progress.
And so it goes. Perhaps one day he'll turn a corner and things will change. He could find someone on the same wavelength -- a fellow autistic traveler; or a nice bossy girl who will take over looking after him. Maybe he'll get a cat! We all change as we grow and get older. Who's to say he won't?
I will remain eternally optimistic. For now.
Tuesday, September 18, 2012
Yes Houston, He Has a Problem
You know, it never ends. From the time he was diagnosed to today, we're still asked to provide proof that our son has a disability. I guess part of it is that he doesn't look disabled (unless you happen to catch him grooving to flashing lights or something). But really. Still? It started when we wanted to get him into a therapeutic nursery outside of our district, continued after a disastrous kindergarten year and we wanted to go out of district again, and once more when we wanted a particular program in a high school other than our own.
We have the reports. We have the medical forms. The evaluations. The tests. We have a file drawer full of paperwork. It all points to the diagnosis of Autism. It's official. He's been inspected and detected. I am getting tired of having to prove this over and over and over.
This time, we're trying to get waiver services for an employment training program. The Development Disabilities Service Organization (DDSO) isn't sure he's qualified to receive this service. We provided the initial reports, reviews, evals, etc., and were sent a letter requesting additional information. Okay, we know the drill, we gave them more reports, reviews and evals. Not enough. They wanted to see him in-person, up-close and personal. Fine with me.
Took him to the meeting. A panel of 3 professionals and the social worker. I admit, I was not prepared for the formality. I thought it was a chat between him and the social worker. Oh no. It was much more. They spoke with him, then with me. Now we wait for 2 to 3 weeks to find out if he's approved or not. If not, then we go to appeal. He'll be 40 by the time this thing resolves!
I'm so tired of this. Yes, he was crowned autistic at 3. And guess what -- he's still autistic at 23! No miracles have occurred. He hasn't grown out of it. And the long-range forecast predicts continued autism. I've come to terms with it, why can't the agencies-that-be realize this?
We have the reports. We have the medical forms. The evaluations. The tests. We have a file drawer full of paperwork. It all points to the diagnosis of Autism. It's official. He's been inspected and detected. I am getting tired of having to prove this over and over and over.
This time, we're trying to get waiver services for an employment training program. The Development Disabilities Service Organization (DDSO) isn't sure he's qualified to receive this service. We provided the initial reports, reviews, evals, etc., and were sent a letter requesting additional information. Okay, we know the drill, we gave them more reports, reviews and evals. Not enough. They wanted to see him in-person, up-close and personal. Fine with me.
Took him to the meeting. A panel of 3 professionals and the social worker. I admit, I was not prepared for the formality. I thought it was a chat between him and the social worker. Oh no. It was much more. They spoke with him, then with me. Now we wait for 2 to 3 weeks to find out if he's approved or not. If not, then we go to appeal. He'll be 40 by the time this thing resolves!
I'm so tired of this. Yes, he was crowned autistic at 3. And guess what -- he's still autistic at 23! No miracles have occurred. He hasn't grown out of it. And the long-range forecast predicts continued autism. I've come to terms with it, why can't the agencies-that-be realize this?
No Screaming
We found a wonderful therapeutic nursery for Zac to attend -- it probably saved my life, actually -- and discovered that Zac could read at an early age. Signs and lists were invaluable to us, so, for about 3 to 4 years, we had a big sign taped to our refrigerator "NO SCREAMING!".
Guests new to our home would frequently look startled when confronted by the signage, and then proceed to speak in hushed tones.
Guests new to our home would frequently look startled when confronted by the signage, and then proceed to speak in hushed tones.
Monday, September 17, 2012
The New Normal
Yes, autism does change things, doesn't it? You go in to the pediatric specialist with your 3-year-old who's "a little delayed", and a few hours later, you come back out with a 3-year-old with autism. Wow. Where'd the sun go? Are those storm clouds in the distance? Boy, did it get chilly fast!
I knew nothing about autism when Zac "got his papers". Remember, this was 1992. Autism had not become the high profile disability it is today. (Yes, we were ahead of the curve!) The internet was not as available as it is now, so I couldn't click my way to knowledge. Barnes and Noble had 3 -- count 'em -- 3 books on their shelves dealing with autism, and they were not encouraging.
A well-meaning librarian where my husband worked gave him a file full of xeroxed articles and studies and research that I truly think made my hair stand on end. I combed those papers looking for the least little sign of encouragement and hope, and found very little. We contacted a support group and were taken aback by the casual, easy manner of the woman who headed the group.
"How do you all deal with your kids, and this disability?" we asked.
"Oh, we use a lot of sick humor!" she told us.
Sick humor? We were sick, all right, but not with humor. More like shock, despair, anger. How could she sound so calm? Of course, years later, I understood perfectly where she was coming from. But we were far from jokes at that stage.
And so we scrambled around, trying to find out what to do next, who to see, where to go. We were at the beginning of a lifelong mission: to explore this strange, new world; to seek out our new life and new civilization; to boldly go where no parent should have to go!
I knew nothing about autism when Zac "got his papers". Remember, this was 1992. Autism had not become the high profile disability it is today. (Yes, we were ahead of the curve!) The internet was not as available as it is now, so I couldn't click my way to knowledge. Barnes and Noble had 3 -- count 'em -- 3 books on their shelves dealing with autism, and they were not encouraging.
A well-meaning librarian where my husband worked gave him a file full of xeroxed articles and studies and research that I truly think made my hair stand on end. I combed those papers looking for the least little sign of encouragement and hope, and found very little. We contacted a support group and were taken aback by the casual, easy manner of the woman who headed the group.
"How do you all deal with your kids, and this disability?" we asked.
"Oh, we use a lot of sick humor!" she told us.
Sick humor? We were sick, all right, but not with humor. More like shock, despair, anger. How could she sound so calm? Of course, years later, I understood perfectly where she was coming from. But we were far from jokes at that stage.
And so we scrambled around, trying to find out what to do next, who to see, where to go. We were at the beginning of a lifelong mission: to explore this strange, new world; to seek out our new life and new civilization; to boldly go where no parent should have to go!
Sunday, September 16, 2012
Diagnosis TV
Directly after we got "the word" that our son was autistic, we were kind of shell-shocked, to say the least. All the usual cliches apply here -- "going through the motions", "sleepwalking", "in a fog", etc. etc. All I really remember from those times was somehow making it through the day, getting Zac to bed, and then watching marathon Dick Van Dyke episodes on Nickelodeon. From about 8 to midnight, it was Dick Van Dyke non-stop.
I wanted to be in another world -- another dimension -- another place -- than the one I was in. If I was with Rob and Laura and Sally and Buddy, then I didn't have to deal with my life. And it worked. From 8 to 12 things were great. Give me Nickelodeon and a blanket to wrap myself in, and everything was fine.
Unfortunately, the Dick Van Dyke Marathon was only a week long.
I wanted to be in another world -- another dimension -- another place -- than the one I was in. If I was with Rob and Laura and Sally and Buddy, then I didn't have to deal with my life. And it worked. From 8 to 12 things were great. Give me Nickelodeon and a blanket to wrap myself in, and everything was fine.
Unfortunately, the Dick Van Dyke Marathon was only a week long.
In the Beginning......
I have a video of Zachary when he was about 10 or 11 months old, carefully pulling himself up by a bookshelf, only to plop back down on his behind. Tears ensued. When he saw I was behind him with the camera, his eyes lit up, the tears changed to a huge smile, and he crawled happily over to where I was. That happy, smiling face filled my viewfinder.
Anyone with their first baby knows those wonderful moments -- they're around every corner. They fill your days with joy and surprises and a constant sense of wonder. Anything is possible.
But then, around a year and a half, things started to change. The smiles weren't as forthcoming. The few words he had started to use vanished. He would play differently with his toys -- looking at them too closely, doing the same thing over and over. He seemed distracted, distant, preoccupied. He wouldn't look at me when I called his name. When we went to the playground he had no interest in the other children -- he was a solitary little boy.
Looking back, if I had known then what I know now, I would have had him to a specialist at 18 months. As it was, we muddled along like this, with our mysterious little boy, for another year and a half. It wasn't until his third birthday that we received the diagnosis. Autism.
And so began the "journey to another planet". Where we've been living ever since.
I started this blog to share my adventures with autism -- the good, the bad, and the ugly. There have been incredible highs, and overwhelming lows. We've experienced giddy happiness, crushing sadness, and regret; laughter and tears, tantrums and meltdowns. Oh yeah, and love. Lots and lots of love.
Anyone with their first baby knows those wonderful moments -- they're around every corner. They fill your days with joy and surprises and a constant sense of wonder. Anything is possible.
But then, around a year and a half, things started to change. The smiles weren't as forthcoming. The few words he had started to use vanished. He would play differently with his toys -- looking at them too closely, doing the same thing over and over. He seemed distracted, distant, preoccupied. He wouldn't look at me when I called his name. When we went to the playground he had no interest in the other children -- he was a solitary little boy.
Looking back, if I had known then what I know now, I would have had him to a specialist at 18 months. As it was, we muddled along like this, with our mysterious little boy, for another year and a half. It wasn't until his third birthday that we received the diagnosis. Autism.
And so began the "journey to another planet". Where we've been living ever since.
I started this blog to share my adventures with autism -- the good, the bad, and the ugly. There have been incredible highs, and overwhelming lows. We've experienced giddy happiness, crushing sadness, and regret; laughter and tears, tantrums and meltdowns. Oh yeah, and love. Lots and lots of love.
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