My oldest son Samuel has Asperger's Syndrome. Many don't know what that is. It's kind of complicated, but I'll try to make it simple. Hans Asperger published the first definition of Asperger Syndrome in 1944. He identified a pattern of behavior and abilities that he called "autistic psychopathy". The pattern included "a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements." Asperger called children with AS "little professors" because of their ability to talk about their favorite subject in great detail.
When I first read this definition I was struck dumb. All of a sudden it made sense that I had a three year old that related everything (and I mean everything!) to Star Wars. He became obsessed with everything Star Wars and one day in church right up at the alter while the pastor was trying to give the children's message he expounded on the topic of the Gospel according to star wars. 'It seems to me', he said "that Luke Skywalker is kind of like Jesus and that Darth Vadar is kind of like Satan, or at least works for him. The force is like God and Satan because there is the dark side and the light side." It seemed to me that the windows of the sanctuary were about to blow out with the laughter that came from the congregation. The pastor just sat there, kind of dumbstruck. Remember, this child was three at the time. I was in the audience trying to decide if I should slink down the pew in embarrassment or beam with pride that my three year old was so insightful! The pastor eventually got back on track. I never have.
My son is now 9. He's in grade three. He's extremely bright, as are most kids with Asperger's Syndrome. He does well in school, and loves to learn. About sixteen seconds after he learns something he is in the backseat of the van telling it to Abby, his seven year old sister, because the only thing he likes better than learning is telling other people what he has learned. Yes, "little professor" applies perfectly to him.
Some of the other symptoms took more time to figure out. Like his lack of Empathy. I thought he had empathy. He had me fooled. I got sick when he was just a toddler and I was throwing up in the toilet, and next thing I know here is Sammy patting my back and saying "shhhh, shhhh Mommy". Wow, how sweet is that? When I was sick in bed with a stomach virus last year (that he was just getting over), he brought me blankets and cold clothes. He took care of me like nobody could, without me even asking! So how is it his sister can fall off her scooter and be bleeding and crying and he can scooter right past her without even seeming to notice? Things that make me go hmmm. I realized at some point that Sammy is a very good mimic. He takes care of me when I'm sick in the exact way I take care of him when he's sick. In his mind, that's how you do it. Like mom does. When he was sad I would hold him and pat him and say "shhhh Sammy, shhh! It's okay". He loves me more than anyone. Joshua calls me "his home base", and in many ways that is true. So he uses me as a model of how to feel. I'm still trying to figure out how much of his "thoughtful" behaviour is learned and how much is true feelings. We went to the fair not long ago and Jackson, his little brother, fell down. Sammy came running up to me and he had true worry in his eyes as he said "mom, come quick, Jackson is hurt!" I went and comforted Jackson (just a little scrape on his knee), but the whole time I was thinking "that was real Empathy!" and I was rejoicing.
Inside, though I was firm on the outside, I also rejoiced the first time Sammy tried to be sneaky last year. My son doesn't lie. He just doesn't. Josh didn't believe that when we first got married. He said "all kids lie". I said "Sammy doesn't". He believes it now. I've never caught Sammy in a willful lie. He may lie from misunderstanding the question, or being frustratingly literal in his answers ("I didn't hit him! I SLAPPED him"). We now ask questions like "Sammy, did you hit, slap, punch, tap, harrass, annoy or otherwise offend Jackson?" He tells the truth, the whole truth, and nothing but the truth. Last year he tried to sneak his Nintendo DS outside after Josh told him he couldn't take it outside. He was transparent about it. Josh saw through it in a new york minute. I was simultaneously very concerned (HE WAS SNEAKY!!!!) and rejoicing (HE WAS SNEAKY!!!). It's a hard line to walk as a mom. You are happy because it is "normal" behaviour, but you still need to teach them it's wrong. Only other Asperger's mom's or Autism mom's really understand this feeling of rejoicing over "bad" behaviour. It means they are making progress. It means one more step out of his little world and into ours.
He still sees HIS problems as huge. Any injustice done to him is horrible, but the same injustice done to a sibling isn't a big deal because he "didn't mean to". If his motive wasn't bad, he sees nothing to feel sorry about. It is a very hard concept to get him to understand.
The inability to make good friendships, and one sided conversations are also a specialty of his. He thinks that everybody should enjoy the play by play of his Nintendo game as much as he does. We've had to teach him what a bored person looks like. We've had to teach him to ask about somebody else and what they like. There is a little boy about his age that lives down the street. I guarantee you he's got Asperger's even though his parents have not had him diagnosed. He is just like Sammy. It is funny to us, and confusing, because this boy will come over to play and an hour later the boy will be in Sammy's room playing DS and Sammy will be in the living room watching TV. I'll say "where's your friend" and he'll say "oh, he's in my room". It doesn't occur to either one of them that when you play together you ought to be .....well....together. They are a perfect pair. I hope that boy never moves.
Sammy, strangely enough,is intensely social and loves to be with people and meet people. He can talk to almost anyone. Unfortunately, though adults tend to adore him for his intelligence, enthusiasm and advanced speech, his peers seem to know that there is something a little different about Sammy. Something not quite "right". He has some incredibly kind children in his class at his small Christian school and for that I'm very grateful. I've always believed and I still believe that public school would chew him up and spit him out in a month. I appreciate the chance his school gives him to grow and learn socially at a pace that he can better cope with. Sammy has had two total meltdowns since school started in August. His classmates don't judge him for it, and his teachers try hard to understand. They pray for him, and they all try to look for the positive in him instead of focusing on the issues. I couldn't ask for much more. He's come a very long way in a year. Josh has had a lot to do with that. My husband looked at Sammy from a step father's perspective, which is a little less involved and emotional than my ex husband and I tend to be. He said basically, "He's a great kid but in a few years if he keeps talking like that he's going to get the crap beaten out of him". Well then. That was hard for me to hear. Over a year later when I ask my child if he'd like me to make him some oatmeal for breakfast says things like "that would be cool mom", "awesome" or "that would be perfect. I'd love that!" When we got married he was answering. "oatmeal? why yes, I adore oatmeal. That would be absolutely wonderful! Thank you SO much mommy!" Though I'm sure you can see why his mommy was charmed with the old way, the new way really will help him get beat up less as he gets older. For this I really appreciate my husband. I'm the momma bear who always jumps to Sammy's defense. Over the years I've had to learn to fight hard for him. To fight for diagnoses, to fight for treatment, to fight for equality, and to fight for his innocence and his childhood. It is hard sometimes to step back and stop fighting. Josh has taught Sammy to be much more resilient. That's a good thing, though it's been as hard on me as it has been on Sammy. Maybe harder.
The thing with Asperger's kids is that they have no filter for stuff coming into their heads. Most of us can disregard the unimportant stuff. They can not. I read once in a wonderful book called The Case of the Dog at Midnight, which is written from the point of view of a teenager with Asperger's, something that explained to me perfectly one of the reasons Sammy is the way he is. It said (and I am grossly paraphrasing because I don't have that book anymore) that a regular person will look at a field and see a field with cows and flowers. Sammy would look at that same field and he would see a field with 17 cows, seven of which are black and white. He would see that the field slopes down to the left. He would see that there were four different kinds of flowers and he would note where they all were. He would notice if there was any dew and he would notice the color of the sky. He would notice cow patties. You get the idea. His brain takes in EVERYTHING he sees. It makes him sensitive (for some it is sound, for Sammy it is smells) to certain things, and it makes it so that sometimes he has to go somewhere and be alone, just to regroup. We always used to find it odd (pre-diagnosis) when we would take him to a party and he would laugh and play and then all of a sudden we'd notice he was gone. He'd be in the birthday child's room quietly playing with a toy. We now know this was a coping mechanism for him. He was always such a sweet and good natured boy that his way was just to slip away. Now that he is older he doesn't always physically get away (especially in a house with six people and 3 rooms). He goes to a place we affectionately call Sammy Land. It's in his head, and by his own admission, it's a very nice place. Sammy Land is not always an easy place to come back from, and it is the creation of Sammy Land that helped us realize that something was wrong. His preschool teacher would tell us that she had to touch him to get him to hear her when the class would switch activities. Many of the little girls in his class would take his hand, lead him where they were supposed to go, or fetch his snack for him (They were all little enablers). In this way he would be gone so often that he couldn't pick up the classroom routine, even halfway into the year. For some born with a less easy going nature the result of overstimulation can be tantrums, running in frantic circles, or any number of other disturbing things. For us, thank goodness, it is Sammy Land.
My ex has many of the same symptoms as Sammy does. There has been research that Asperger's is highly concentrated in areas where there is a high concentration of geeks marrying geeks (okay, the research didn't put it in those exact terms) like in Silicon Valley in California. My ex husband's mom and dad are both engineers. He is also an engineer. All very logical and linear thinkers. Linear marries linear and has a little double linear. He then goes on to have Sammy. Take Sammy and Sammy Land and times it by 10 and you have a severe autistic child who can never leave his own land. We are blessed.
I believe it is people like Sammy who will grow up thinking outside the box, making headway into places other people might not dare to go, or even be able to. Many people think Einstein probably had Asperger's syndrome. Well, you could do worse than Einstein! Even if Sammy doesn't grow up and invent something wonderful (as his three siblings readily admit to believing he will), doesn't discover the cures for (his list) cancer, spina bifida and Asthma, or change the world in a profound way, I wouldn't change one single thing about him. He has profoundly changed MY world already, at the tender age of 9. He has widened my heart, opened my eyes, and given me insight and understanding into people. He has taught me greater Empathy, greater patience, and greater love. Second only to Jesus Christ has anybody ever so profoundly changed the substance of who I am. God made him a miracle, and meant him to be exactly who he is. I'm not trying to change Sammy to "fit in" with the world, I'm just working to help him cope with having to live in it. Couldn't we all use a little help with that? Here's the bottom Line:
He's my Sammy, and I love him so.
Blessings and good night. Tanya
p.s. for more information on Asperger's syndrome, a good site to visit is http://www.aspergersyndrome.org/
| “ | We are convinced, then, that autistic people have their place in the organism of the social community. They fulfil their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers. - Hans Asperger. |
