The first thing I have to say about 2013 is that I'm glad it's nearly over. It has been a tough year for our family with illnesses, hospitalizations, recoveries, and the deaths of several close relatives. It's never easy, but it can be very overwhelming when it happens all at once. I'm hoping 2014 can bring us a chance to catch our breath and find some balance again.
That being said, as far Sam is concerned, I feel like 2013 has been a good year for him overall. I have seen tremendous growth over the past 12 months in many ways. Last year at this time we still had the little boy Sam very much in residence, this year we are living with a young man.
It's hard to put a finger on just when it happened, but definitely during this year I've noticed him embracing middle school a bit more and expressing the desire to become more involved. This was the first year he became an active participant in his social life, coming up with his own ideas, picking out his own friends, communicating with them. A huge change from the control we have always exerted over his social encounters.
Mostly I would say we have something called the PEERS program to thank for this, but I think readiness and maturity has played a role as well. I first heard about the PEERS program through my involvement with CARD and SUNY Albany, and thought it sounded a lot like something Sam could benefit from. We signed up and waited for a few months for the funding to come through and the program to begin. As luck would have it, we ended up in a summer session that required a big time commitment on our part- and severely cut into the little free time we normally have during the summer. Anyway, we did commit to it, and, looking back, I'm glad we did. The benefits have been enormous for Sam. He learned about many aspects of life as a teen that would probably never have crossed his mind if left to his own devices. The working on phone skills alone was worth the 7 weeks of meeting 2x times a week. Before PEERS, Sam was reluctant to use the phone at all, and definitely not to communicate with any friends. Since graduating from the program, he uses the phone regularly to communicate with Nick, his best friend.
A best friend! Yes, Sam really has one. Years ago when I started this sorry excuse for a blog, I never could have imagined such a thing might happen. Sure, Sam was always pretty social, in his way, but always had a much easier time of it communicating with adults rather than peers. He's had playmates, classmates, kids he hung around with, but never a real, true friend. Until Nick. Nick and Sam met at Friday Knights. They have much in common (both 12 years old, in 7th grade, loving taking Spanish, both with an ASD, both love Angry Birds, etc), but they also have some very important differences, which I think makes it work for both of them. Nick is more serious than Sam, and one can tell someone who thinks a great deal about things. Sam is much more reactive, and I've found over the months that they've been hanging around together that some of this thoughtfulness has rubbed off on Sam.
Another thing I love about their friendship is that they not only have fun together cooking up this elaborate Angry Birds adventures, they also talk about serious subjects. Sam asks Nick's advice about dealing with the girls in his class, Nick tells Sam about when kids in school are mean to him and what he does about it. This, to me, is the sign of a true friend. Someone with whom you can have fun, but also talk to about your innermost thoughts. This is so valuable for Sam on so many levels, and it makes me feel so happy for him.
Sam has also discovered girls this year- really he had no choice in the matter, since he is surrounded by females in school, and attends all his classes with 3 of them! He is getting a crash course in how middle school girls operate, which, as many of us might remember, can really be a minefield! He developed a crush on one of the girls in his class, and we have been treated nearly daily to the "drama" unfolding at school as she began "dating" another boy, "broke up" with said boy, only to have Sam declare he was only interested in being friends with her. He has also established a friendly relationship with a girl he previously had a problem with last year. In 7th grade, they have found common ground and are getting along well. It makes me feel so satisfied to see him navigating middle school as well as he has so far. He continues to receive good support at school, and we are happy with his placement, at least through next year.
This progress has us thinking about the future, and we are looking to maybe make some major changes. My goal is to try to use this blog to sort my way through this process in the next year, record my thoughts and impressions as we move forward. A new journey is beginning soon, so it's never too early to prepare for it.
Tuesday, December 31, 2013
Tuesday, April 2, 2013
World Austim Day, April 2, 2013
Today is World Autism Day! I know I haven't written on this blog in awhile (I guess that must mean things are going well and I have nothing to vent about!), but I wanted to share some thoughts on this occasion, as Autism Awareness month begins!
When I think about the effect that autism has had on our family and on my life personally, I can only say it's been a blessing, and I mean that in the fullest sense of the word. Anyone who knows me knows that I tend to have a positive outlook, not in a "Susie Sunshine" kind of way, but in a realist kind of way. It's rare that I get depressed or think of things negatively, and if I do I don't stay down for long. I've been blessed that way. This past winter has been full of challenges for our family- deaths of close family members, serious illnesses, life-changing events. A few times I've felt numb, but each time I could feel myself pulling out of it and into the light again. My experience with autism has kind of been like that, too. Sometimes there have been steps backwards, false starts, disappointments, but each time I've gotten back on the horse, because, as I've stated on this blog before, failure is not an option.
But I digress. Why do I feel like autism has been such a blessing for us? There are many reasons, but mainly I feel like Sam's autism has made me a much better person. The things I have learned about myself in the last 12 years would fill a book, and I keep learning every day. First of all parenthood made me feel a love for another human being I never thought possible, then when that was established a monkey wrench called Asperger's Syndrome got thrown into the mix. Here was something my son had that I had never even heard of, much less know how to deal with. Even without the knowledge of how to help him, the commitment to do it was there. So we sought out the people and places with the knowledge to help us, stumbled through the first few years (as chronicled in the early posts of this blog), found our way into "normal" life, and now here we are. I've learned that I have a whole aspect of my personality that is fearless when it comes to my son's needs, I've learned how to articulate that fearlessness in a diplomatic and persuasive way, I've learned that I have a capacity for patience that is pretty much bottomless (well, maybe not with Tom or my mother!), and I've learned that I can reduce the stress level in my life to barely a pulse, something we all benefit from!
Another thing I can thank autism for is the excuse to live life in my own way, and not have to feel weird or outcast if we don't follow the crowd. One reason I waited so long to have a child in the first place was because I knew I would not fit in with the "typical" parents and want to do the "typical" things most families do. I did not think I would have permission to do things they way I wanted to. Autism frees me from the world of organized sports, PTA fundraising, and "keeping-up-with-the-Joneses" syndrome. Sam is his own kid with his own timetable and his own interests. The things his 12 year old peers are doing now he might not want to do until he's 15 or older. I've had to grow into being ok with his timing, but the fact is that it's HIS timing- he eventually does most things that NT kids do, or has outgrown them by the time they are relevant, and usually he doesn't care. We can surround ourselves with people with whom we actually have things in common and whose company we enjoy. We are not just thrown together because our kids play baseball at the same time. Having never been much of a "joiner", I appreciate the fact that Sam's autism encourages all of us to seek out people with similar experiences, or to be with the people who have come to know and love us, quirks and all.
We've been so blessed to have the help and support of good friends and family over the years. People may not have known what to say or do to help, but they were there and their support has been invaluable. I've met so many wonderful people in the Autism community and made quite a few close friends. Those people simply would not have been on my radar if it weren't for autism. I've met kids and adults who range from one end of the spectrum to the other, and it's been such a blessing to see them all as individuals, and not just defined by their diagnosis. I've also met many others with different abilities. This community is one I would not have been exposed to if it wasn't for autism.
I also am thankful for the challenges autism has thrown our way. Sam's behavior problems in his younger days were definitely hard to deal with, but I am thankful they happened to us because it gives me the power to empathize with those who are dealing with it now. Unless you have had to deal with behavior challenges, it can be very difficult to put yourself into the shoes of a parent who is struggling. Our experience with Sam helps me to understand what others and going through, and also to offer them a glimpse of hope for the future.
I know not everyone who is dealing with autism in their lives can look at it in the way I do, and there are days when it's not such a blessing for me as well. Not everyone has the benefit of a supportive spouse, time and financial resources to try different strategies, help from family and friends, living in an area where there are resources and a community of families with similar challenges. I'm not much of an activist when it comes to "the cause", but I do pray that awareness allows people who are struggling to find the strength within themselves to do all in their power to help their loved one with autism. The rewards for everyone involved are priceless!
When I think about the effect that autism has had on our family and on my life personally, I can only say it's been a blessing, and I mean that in the fullest sense of the word. Anyone who knows me knows that I tend to have a positive outlook, not in a "Susie Sunshine" kind of way, but in a realist kind of way. It's rare that I get depressed or think of things negatively, and if I do I don't stay down for long. I've been blessed that way. This past winter has been full of challenges for our family- deaths of close family members, serious illnesses, life-changing events. A few times I've felt numb, but each time I could feel myself pulling out of it and into the light again. My experience with autism has kind of been like that, too. Sometimes there have been steps backwards, false starts, disappointments, but each time I've gotten back on the horse, because, as I've stated on this blog before, failure is not an option.
But I digress. Why do I feel like autism has been such a blessing for us? There are many reasons, but mainly I feel like Sam's autism has made me a much better person. The things I have learned about myself in the last 12 years would fill a book, and I keep learning every day. First of all parenthood made me feel a love for another human being I never thought possible, then when that was established a monkey wrench called Asperger's Syndrome got thrown into the mix. Here was something my son had that I had never even heard of, much less know how to deal with. Even without the knowledge of how to help him, the commitment to do it was there. So we sought out the people and places with the knowledge to help us, stumbled through the first few years (as chronicled in the early posts of this blog), found our way into "normal" life, and now here we are. I've learned that I have a whole aspect of my personality that is fearless when it comes to my son's needs, I've learned how to articulate that fearlessness in a diplomatic and persuasive way, I've learned that I have a capacity for patience that is pretty much bottomless (well, maybe not with Tom or my mother!), and I've learned that I can reduce the stress level in my life to barely a pulse, something we all benefit from!
Another thing I can thank autism for is the excuse to live life in my own way, and not have to feel weird or outcast if we don't follow the crowd. One reason I waited so long to have a child in the first place was because I knew I would not fit in with the "typical" parents and want to do the "typical" things most families do. I did not think I would have permission to do things they way I wanted to. Autism frees me from the world of organized sports, PTA fundraising, and "keeping-up-with-the-Joneses" syndrome. Sam is his own kid with his own timetable and his own interests. The things his 12 year old peers are doing now he might not want to do until he's 15 or older. I've had to grow into being ok with his timing, but the fact is that it's HIS timing- he eventually does most things that NT kids do, or has outgrown them by the time they are relevant, and usually he doesn't care. We can surround ourselves with people with whom we actually have things in common and whose company we enjoy. We are not just thrown together because our kids play baseball at the same time. Having never been much of a "joiner", I appreciate the fact that Sam's autism encourages all of us to seek out people with similar experiences, or to be with the people who have come to know and love us, quirks and all.
We've been so blessed to have the help and support of good friends and family over the years. People may not have known what to say or do to help, but they were there and their support has been invaluable. I've met so many wonderful people in the Autism community and made quite a few close friends. Those people simply would not have been on my radar if it weren't for autism. I've met kids and adults who range from one end of the spectrum to the other, and it's been such a blessing to see them all as individuals, and not just defined by their diagnosis. I've also met many others with different abilities. This community is one I would not have been exposed to if it wasn't for autism.
I also am thankful for the challenges autism has thrown our way. Sam's behavior problems in his younger days were definitely hard to deal with, but I am thankful they happened to us because it gives me the power to empathize with those who are dealing with it now. Unless you have had to deal with behavior challenges, it can be very difficult to put yourself into the shoes of a parent who is struggling. Our experience with Sam helps me to understand what others and going through, and also to offer them a glimpse of hope for the future.
I know not everyone who is dealing with autism in their lives can look at it in the way I do, and there are days when it's not such a blessing for me as well. Not everyone has the benefit of a supportive spouse, time and financial resources to try different strategies, help from family and friends, living in an area where there are resources and a community of families with similar challenges. I'm not much of an activist when it comes to "the cause", but I do pray that awareness allows people who are struggling to find the strength within themselves to do all in their power to help their loved one with autism. The rewards for everyone involved are priceless!
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