I've read a lot about Aspergers. We've talked with countless professionals, gone to conferences, classes and workshops. There are so many insightful people out there! We have two sons diagnosed with Aspergers, or Autism Spectrum Disorder. The thing is, I just do not see it as a Disorder, without making a recognition that most of the focus goes to how people with Aspergers are different and need to adjust to every day situations, yet most of us rarely take any responsibility to doing some adjusting too. I am always amazed at how much change in behaviour and emotional states for the boys comes when we do some common sense adjustments to the environment. There is a possibility that kids with "special needs" may be barometers in a faulty system that always defaults to accomodate for the majority - like in school classrooms, but we can evolve with initiatives to include everyone, and embrace difference as contributory. There are exciting currents in these directions everywhere.
Ben and Davis' perception indexes are different, and although differently ordered than the more general population, not disordered. The negative connotation that comes with the word "disorder" causes me concern. They struggle partially because most of us want them to see the world "our way" - the "neurotypical" way. A great thing is, there is a huge concentration on helping kids with Aspergers learn how to self regulate, become more flexible, understand the perceptions of others etc. I would like to add that making an equal effort to understand and respect their points of view, and making changes in ourselves and common environments is equally important. We can ask questions. We can listen.
Sunday, 24 February 2013
Wednesday, 20 February 2013
Goggles
My sister and I took my two boys and her twelve-year-old son swimming last week. It was fun... watching from the side, because I got to see the kids enjoying themselves, and doing interesting things.
Ben lost his goggles. As he was leaving the pool, I mimed a reminder to him, making glasses shapes with my fingers circling my eyes. He walked back along the side of the pool, slowling, thinking. He got back into the family hot tub and and sat down. I watched as he started pulling his hair out, one at a time. I remarked to my sister about him just sitting there not looking for the goggles. And why was he trying to pull out individual hairs? Was he ignoring me completely and just goofing off?
I watched him for a few more minutes until he proved he had forgotten all about the goggles by floating on his side. I began to dismiss them as lost, and focused my attention on reminding the other two boys it was time to leave. A few minutes later Ben came walking up, dangling his goggles, I gave him a thumbs up and the boys went to get changed.
Later that night I asked Ben how he found the goggles.
"Well," he said, "I thought about where I had seen them last. In the hot tub. So, I went back and sat down where I had been sitting. I wondered where they would have gone if I had dropped them in that spot. I noticed there is a current in the water from the air jets on the sides. Goggles float for a while and then will either sink or stay afloat depending on the current trajectory and pulling force of the undercurrent."
"Why were you pulling out the hairs on your head?" I asked.
"Each hair is light enough to stay afloat, so my thinking was if I watched the pathway of the hair it would lead me to a more probable and logical destination of the goggles. But, the hair was too light and fast and difficult to track. So, I made my arm as limp as possible and allowed it to float, watching its direction, and tried to follow it. This led me to a different part of the hot tub. I then found a water toy with a similar weight and boyouncy to goggles; I let them go, which actually worked and led me straight to the goggles."
---------
My assumptions of his intentions contradicted the reality that his behavior of sitting and playing with his hair and trying to float in the hot tub were actually clever ways to fulfill my request that he find the goggles. And it worked:)
Ben lost his goggles. As he was leaving the pool, I mimed a reminder to him, making glasses shapes with my fingers circling my eyes. He walked back along the side of the pool, slowling, thinking. He got back into the family hot tub and and sat down. I watched as he started pulling his hair out, one at a time. I remarked to my sister about him just sitting there not looking for the goggles. And why was he trying to pull out individual hairs? Was he ignoring me completely and just goofing off?
I watched him for a few more minutes until he proved he had forgotten all about the goggles by floating on his side. I began to dismiss them as lost, and focused my attention on reminding the other two boys it was time to leave. A few minutes later Ben came walking up, dangling his goggles, I gave him a thumbs up and the boys went to get changed.
Later that night I asked Ben how he found the goggles.
"Well," he said, "I thought about where I had seen them last. In the hot tub. So, I went back and sat down where I had been sitting. I wondered where they would have gone if I had dropped them in that spot. I noticed there is a current in the water from the air jets on the sides. Goggles float for a while and then will either sink or stay afloat depending on the current trajectory and pulling force of the undercurrent."
"Why were you pulling out the hairs on your head?" I asked.
"Each hair is light enough to stay afloat, so my thinking was if I watched the pathway of the hair it would lead me to a more probable and logical destination of the goggles. But, the hair was too light and fast and difficult to track. So, I made my arm as limp as possible and allowed it to float, watching its direction, and tried to follow it. This led me to a different part of the hot tub. I then found a water toy with a similar weight and boyouncy to goggles; I let them go, which actually worked and led me straight to the goggles."
---------
My assumptions of his intentions contradicted the reality that his behavior of sitting and playing with his hair and trying to float in the hot tub were actually clever ways to fulfill my request that he find the goggles. And it worked:)
Thursday, 7 February 2013
Bens
On Saturday Ben and I walked down to the Central Library, he’s doing a project on the War of 1812. It was a nice walk. We talked about his upcoming 12th birthday. As we walked passed The Art Gallery, we saw signs that read “Autism is not a Crime” and “Give Ben a Chance at Life”. I looked at Ben.
We were drawn to the tent made of white tarp, large photos of a boy named Ben lined the walls, “Free Ben” handwritten on poster board. And then I remembered, I had heard on the news about a family pushed to the edge. A family battered by injustice, but not broken. Not broken because of a Mother’s unwavering voice of love, and her strong, clear stand against an appalling lack of basic care and dignity from a Psychiatric System, who’s mandate it is to improve and monitor the mental well-being of those in its CARE. This family feels their only hope now is to appeal to the public to unite with them, because their voices have become hoarse from shouting into the wind of apathy and bureaucracy. Literally, this mother was losing her voice while speaking to us. She was living in a self made structure in a desperate attempt to raise awareness of her son’s plight, and unfortunately there are others like him, with unique profiles of strengths and challenges who are mislabeled and unjustly confined. As her sign read, “Autism is not a crime," nor should people with autism be treated as criminals. Right now, her son, Ben, is not being given access to care compatible with his current needs as a person with Aspergers.
He deserves access to mental health agencies and housing accommodation specifically addressing his needs as a person with autism, by a team of professionals specializing in autism, with consultation from his family. People with autism are highly capable of contributing generously to society and living independent, happy lives - like everyone else. To be honest, it feels a little on the ridiculous side that this situation is even possible in a world as capable of compassion and educated choices as we live in today.
She asked me, “How would you feel if your son were kept in solitary confinement, overly medicated without meaningful and appropriate access to professionals in our city who have offered their expertise and are willing to help him transition into independent living?"
How would you feel if that were your son? I know how I would feel.
There is plenty of hope, because with action we can ensure that all children with autism are enfolded with respect and understanding to the benefit of all.
Go to their website http://silentnomorebc.com/
Wednesday, 30 January 2013
Gross but encouraging
Davis had a cold, which shifted into viral induced asthma. So, he looks and sounds quite awful. Which is a step up from frightfully congested and coughing up a lung. On the mend, he went to school yesterday after being away for more than a week. I picked him up at noon and we went out for sushi. We talked about Minecraft, or rather he told me all about his house in the hill and how many diamond and gold blocks it would take to make a wedding ring for a potential wife if he ever wanted to get the mod? that would afford him interaction with villagers, but he finds them too scary looking so he is content on his own. And did you know that it is quite hard to be a vegetarian in Minecraft? Anyway, I learned that and many other weird and wonderful facts about his new life's passion. The most interesting part of our conversation came when I asked him about how his morning went.
"We'll, the SSW (Student Support Worker) had super terrible breath today!"
"Oh," I said. I've heard plenty of feedback about my and everyone else's body odor from my two olfacorily enhanced boys. They are very sensitive to smell. (Ben told me in the school lobby the other day that he knew I had entered the building before he turned around because he could smell me- because of the same perfume I've been wearing since he was born, he says. Makes me sound on par with a teenager in love with his Axe Body Spray.)
"We were sitting at the same table doing math, but I had to get up and walk around, to get a break from the awful smell," he said. "I hope she didn't know why I got up."
"But I can still smell her in my nostrils."
"Interesting," I said.
"It smells bad, like a foreign Chinese food restaurant where somebody was murdered."
He blew his nose. He stared, looked at his Kleenex, blew his nose again.
"It's me," he said. "It's my snot."
"Pardon?"
"It wasn't even her, it was in my nose the whole time," he said musingly.
"We'll, as disturbing as that is, I am really impressed that you didn't say anything to her about what you thought was her intense and disgusting smell. That may have hurt her feelings."
"I know... I didn't want to make her feel bad, so I just got up and moved away until I could stand it again... But then it stayed with me..."
"That is pretty funny," I said, smiling.
"Well, it's informative anyway," he said, nodding.
"You handled that very well," I said.
"Thanks," he said. "I still smell stink everywhere I go."
---------------
I am proud of him for trying to be sensitive to her feelings by not accusing her of smelling like death and bad Chinese food.
"We'll, the SSW (Student Support Worker) had super terrible breath today!"
"Oh," I said. I've heard plenty of feedback about my and everyone else's body odor from my two olfacorily enhanced boys. They are very sensitive to smell. (Ben told me in the school lobby the other day that he knew I had entered the building before he turned around because he could smell me- because of the same perfume I've been wearing since he was born, he says. Makes me sound on par with a teenager in love with his Axe Body Spray.)
"We were sitting at the same table doing math, but I had to get up and walk around, to get a break from the awful smell," he said. "I hope she didn't know why I got up."
"But I can still smell her in my nostrils."
"Interesting," I said.
"It smells bad, like a foreign Chinese food restaurant where somebody was murdered."
He blew his nose. He stared, looked at his Kleenex, blew his nose again.
"It's me," he said. "It's my snot."
"Pardon?"
"It wasn't even her, it was in my nose the whole time," he said musingly.
"We'll, as disturbing as that is, I am really impressed that you didn't say anything to her about what you thought was her intense and disgusting smell. That may have hurt her feelings."
"I know... I didn't want to make her feel bad, so I just got up and moved away until I could stand it again... But then it stayed with me..."
"That is pretty funny," I said, smiling.
"Well, it's informative anyway," he said, nodding.
"You handled that very well," I said.
"Thanks," he said. "I still smell stink everywhere I go."
---------------
I am proud of him for trying to be sensitive to her feelings by not accusing her of smelling like death and bad Chinese food.
Lemonade
Ever had a really long day, and you are so tired and you just want to go to bed, and there is still so much to do, and it's midnight which makes it technically tomorrow, and time is running out on the deadline for the inspiring new initiatives your new boss has stipulated you propose to him or you will lose your job, one of your children has a double ear infection, the other two are coughing and calling for you, your wife is crying while updating you on all the rotten things that happened this week that you can do nothing about, including that your son accidentally broke her computer while trying to do something nice for her by updating her system and she is expecting you to be a miracle worker and fix it before her 9:00 am meeting, and you haven't eaten since lunch, and you saw a picture of yourself today that made obvious to you that you are losing your hair...
Anyway, this is a sampling of my husband's day last week, which put him in the state of mind to heavily sit and slump, and say to me:
"They say when life gives you lemons, make lemonade.
But you can't make lemonade out of urine."
We both laughed, and felt better.
Anyway, this is a sampling of my husband's day last week, which put him in the state of mind to heavily sit and slump, and say to me:
"They say when life gives you lemons, make lemonade.
But you can't make lemonade out of urine."
We both laughed, and felt better.
Thursday, 10 January 2013
Reminder to me
We've all had times in our lives we would like to forget. Some memories are super embarrassing or painful. Some just remind us how dumb we can be. We need to give ourselves and each other a break. We all make mistakes.
Something I say to myself that applies to everyone, especially kids with exceptional strengths sometimes hidden to the untrained eye:
"Just because you've seen me at my worst, doesn't mean I don't have a best."
One of the boy's teachers forgot this and it made for a very hard year.
Cheers, to all the teachers and student support teams who see the golden nugget in every kid. And here's to the resilience in all of us.
Something I say to myself that applies to everyone, especially kids with exceptional strengths sometimes hidden to the untrained eye:
"Just because you've seen me at my worst, doesn't mean I don't have a best."
One of the boy's teachers forgot this and it made for a very hard year.
Cheers, to all the teachers and student support teams who see the golden nugget in every kid. And here's to the resilience in all of us.
Monday, 3 December 2012
Butt Mom
I finally got to do something I've been wanting to do for years. It was as funny as I had hoped, to me anyway.
Years ago I saw the movie Jack Frost; it was Christmas and I was feeling brain dead/cheerful enough to watch the TV holiday movie on at the moment. Now, the context is hazy (I've forgotten the entire movie except for one part), but there's a scene where the young son is complaining to his Mom about having to do something he doesn't want to do. You know, we've all done it as kids, but it so annoying as a parent to be on the other side of immature manipulative techniques (or sophisticated, depending on the level of charming). The boy says, in a whiny voice, "... but Mom..." and her response was great. I laughed so hard. And I resolved right then and there that I would tether this comeback in the back of my mind, and let it loose at the perfect moment.
Ben was a toddler at the time, but yesterday, almost 10 years later, my opportunity came, unexpected, like magic. Un-magically, I was unloading the dishwasher. I asked Ben to help. He came in the kitchen, head to the side, shuffling slowly. "But, Mooommm...." he started, and I perfectly timed,
"Did you just call me butt Mom?"
He stared. The wheels turned. "Nooo..." and while he back-pedalled, I laughed, and then we both burst into laughter. He has a great sense of humour. I even slapped my knee.
Part of the reason why I found this funny, was because it was a hard-earned joke. Ben is, almost always, highly effected by language. Where a coma is verbally placed, tone of voice, order of words, logical context requests(?)... can bring a smooth response and easy compliance, or a long drawn out argument, integrally linked to his mood and level of sensory overload. Oh, the stubborn stare that could have been avoided recently if I had just said "Yesterday you helpfully pointed out that we are low on toothpaste and batteries. I would love your help to make sure we get the right kind of batteries, and at the best price, so how about we go to London Drugs right now which is right beside the Rec Centre where Kate will be for a birthday party from 12:30 to 2:00. This will give us plenty of time to also compare the Canon and Nikon cameras you have been wanting to show me," instead of saying, "We need to leave now to take Kate to the birthday party," in a directional, distracted tone.
And if you just had the thought that kids should just listen to and obey their parents regardless of how they stipulate that the chores get done, I used to agree with you, but then I didn't have a son with Aspergers. And believe me, how you say it matters.
But, sometimes we can breezily shake off words, they make a soft sound, like plink plink of keys on pavement, like I can imagine they might in one of my favourite books, The Phantom Tollbooth. Who needs words when conversational nods communicate the restful delight in sharing an amazing cinnamon bun. Those connections are awesome.
Ben's laughter is infectious and his smile changes how I perceive time; a moment can feel like the best kind of forever.
(Ben just read this post, and said "It was funnier than that, but I can't think of any advice for you.")
Years ago I saw the movie Jack Frost; it was Christmas and I was feeling brain dead/cheerful enough to watch the TV holiday movie on at the moment. Now, the context is hazy (I've forgotten the entire movie except for one part), but there's a scene where the young son is complaining to his Mom about having to do something he doesn't want to do. You know, we've all done it as kids, but it so annoying as a parent to be on the other side of immature manipulative techniques (or sophisticated, depending on the level of charming). The boy says, in a whiny voice, "... but Mom..." and her response was great. I laughed so hard. And I resolved right then and there that I would tether this comeback in the back of my mind, and let it loose at the perfect moment.
Ben was a toddler at the time, but yesterday, almost 10 years later, my opportunity came, unexpected, like magic. Un-magically, I was unloading the dishwasher. I asked Ben to help. He came in the kitchen, head to the side, shuffling slowly. "But, Mooommm...." he started, and I perfectly timed,
"Did you just call me butt Mom?"
He stared. The wheels turned. "Nooo..." and while he back-pedalled, I laughed, and then we both burst into laughter. He has a great sense of humour. I even slapped my knee.
Part of the reason why I found this funny, was because it was a hard-earned joke. Ben is, almost always, highly effected by language. Where a coma is verbally placed, tone of voice, order of words, logical context requests(?)... can bring a smooth response and easy compliance, or a long drawn out argument, integrally linked to his mood and level of sensory overload. Oh, the stubborn stare that could have been avoided recently if I had just said "Yesterday you helpfully pointed out that we are low on toothpaste and batteries. I would love your help to make sure we get the right kind of batteries, and at the best price, so how about we go to London Drugs right now which is right beside the Rec Centre where Kate will be for a birthday party from 12:30 to 2:00. This will give us plenty of time to also compare the Canon and Nikon cameras you have been wanting to show me," instead of saying, "We need to leave now to take Kate to the birthday party," in a directional, distracted tone.
And if you just had the thought that kids should just listen to and obey their parents regardless of how they stipulate that the chores get done, I used to agree with you, but then I didn't have a son with Aspergers. And believe me, how you say it matters.
But, sometimes we can breezily shake off words, they make a soft sound, like plink plink of keys on pavement, like I can imagine they might in one of my favourite books, The Phantom Tollbooth. Who needs words when conversational nods communicate the restful delight in sharing an amazing cinnamon bun. Those connections are awesome.
Ben's laughter is infectious and his smile changes how I perceive time; a moment can feel like the best kind of forever.
(Ben just read this post, and said "It was funnier than that, but I can't think of any advice for you.")
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