Do you have a hobby or an interest? Maybe a collection? Me too. As a kid it was baseball cards, stamps, coins and beer cans for me. I still have a bunch in a closet upstairs. At any rate, many of us have some semblance of an interest in something be it a sport, a collection, history, etc.
People on the autism spectrum have interests too. In the early days, my son was fascinated by spinning wheels and water. Something right out of the autism brochure you'd pull from the doctor's office. I remember when he was 2 he sat on the driveway and pulled a washcloth out of bucket of water and suds for close to an hour while I washed the car. He sat so still and was so amazed by what he saw. I wish I could see the wonder in simple things like that.
I've met people on the autism spectrum with all sorts of deep interests like hairless dogs, the Simpsons, or particular movies and movie characters! The desire to focus, the ability to memorize all the details and the skill to focus so deeply, and often for so long at a stretch, on these topics is really amazing. With all of our multi-tasking at home and at work, I can't help but want to emulate them. Their deep interests are the antithesis of Attention Deficit Disorder.
Interestingly, my son doesn't have really deep interests. I describe him as a skipping stone along a smooth lake. Interests come and go. Novelty is what drives him. There are recurring themes but he moves from one to another relatively quickly. What's the same between my son and many others on the autism spectrum is that for the short stints, his interest is almost all consuming. The last 2 days it's been a notebook with notes on the tricks he's learning on his razor scooter. Before that it was bottlecap pins made by taping safety pins to beer bottle caps.
I love the deep interests. I love when parents and friends support those interests. I crave for the ability to focus in a similar manner. Every once and a while I'd like to be something other than 'Master of many and expert of none'.
Saturday, April 6, 2013
Friday, April 5, 2013
Autism Awareness #3 - Sibling rivalries
I grew up in a big family - 7 kids. Yours. Mine. Ours. I'm intimately familiar with sibling rivalries whether it was sports and competition, the seemingly endless pranks like short sheeting beds, or just the day-to-day stuff that drives each other crazy. I get it. However, I didn't have a sibling with a social and communication disorder.
The rivalries between my sons are not "normal" stuff like I mentioned above. They are rarely obvious and so filled with the complexities of autism that they make them difficult to identify and navigate through. The rivalries are really when his brothers push too hard, take too much charge of situations, or don't let games play out. M's best friend is his little brother. In some ways, though, the relationship is inverted as his little brother has been raised around therapists. He knows how to direct M. That's all fine and well until M has had enough. But they don't really compete in the traditional sense.
A sizable struggle throughout is that M's brothers don't know how to monitor where he is at, what's causing him issues and when he's had enough. Not that it's all on them to adopt but tracking M's status is an important skill to have if you want to connect withhim. From the outside when things go wrong it looks like M's emotional state goes from 0-60 in a second. Tracking that is hard enough for my wife and I. What comes out is a torrent of emotion. This is so polar opposite of his typical quite and kind behavior. It shocks my wife and I but really hits home on his siblings because his angst is pointed at them. Hurt feelings are exascerbated because he doesn't always have the right vocabulary to access so he uses words like "hate" and statements like "I wish I had a new family". Those things are tough to hear from a sibling especially when you don't see how you've hurt him. It's difficult to hear when you're 8 that talking too loud causes you're brother to hate you. That's not the same as bugging each other in the back seat of the station wagon or a fist fight with a sibling in your teens.
So my request to you is this. If you hear a parent like me talk about sibling issues when one is on the autism spectrum, please don't respond with blanket statements like "don't all siblings drive each other nuts once in awhile" or "that's just so normal". At some level I'd agree with you but what's different here is the fragility of the situation. What you think might be supporting comments may come off as dismissive. As a parent of a child with autism, I'm hyper senstive to dismissive comments because I've been fighting for his needs for so long. Instead, try a supporting statement like "that's got to be difficult to see happen" or "that must be tough for all of you guys". Those types of statements will make all difference.
The rivalries between my sons are not "normal" stuff like I mentioned above. They are rarely obvious and so filled with the complexities of autism that they make them difficult to identify and navigate through. The rivalries are really when his brothers push too hard, take too much charge of situations, or don't let games play out. M's best friend is his little brother. In some ways, though, the relationship is inverted as his little brother has been raised around therapists. He knows how to direct M. That's all fine and well until M has had enough. But they don't really compete in the traditional sense.
A sizable struggle throughout is that M's brothers don't know how to monitor where he is at, what's causing him issues and when he's had enough. Not that it's all on them to adopt but tracking M's status is an important skill to have if you want to connect withhim. From the outside when things go wrong it looks like M's emotional state goes from 0-60 in a second. Tracking that is hard enough for my wife and I. What comes out is a torrent of emotion. This is so polar opposite of his typical quite and kind behavior. It shocks my wife and I but really hits home on his siblings because his angst is pointed at them. Hurt feelings are exascerbated because he doesn't always have the right vocabulary to access so he uses words like "hate" and statements like "I wish I had a new family". Those things are tough to hear from a sibling especially when you don't see how you've hurt him. It's difficult to hear when you're 8 that talking too loud causes you're brother to hate you. That's not the same as bugging each other in the back seat of the station wagon or a fist fight with a sibling in your teens.
So my request to you is this. If you hear a parent like me talk about sibling issues when one is on the autism spectrum, please don't respond with blanket statements like "don't all siblings drive each other nuts once in awhile" or "that's just so normal". At some level I'd agree with you but what's different here is the fragility of the situation. What you think might be supporting comments may come off as dismissive. As a parent of a child with autism, I'm hyper senstive to dismissive comments because I've been fighting for his needs for so long. Instead, try a supporting statement like "that's got to be difficult to see happen" or "that must be tough for all of you guys". Those types of statements will make all difference.
Thursday, April 4, 2013
Autism Awareness #2 - In bed but not sleeping
I travel a lot. Planes mostly but sometimes by car for local trips. Putting my son to bed feels like a plane trip. Why you as? Well, you know how you arrive at the gate good and early and they board on time and everyone gets to their seats only to pull away from the gate to sit on the tarmac? Rumor has it that the grounds crew's primary motivation is to simply "leave" on time.
Sometimes putting my son to bed feels like that. My wife and I focus on having a consistent bedtime process but I know darn well he will just lay in bed, wide awake for hours. At least sitting on the tarmac I can read a book or possibly take a nap. In this case, though, I'm rarely sure what he's thinking about. I don't want to just leave on time. I want the darn plane to take off!
I check on him 2-3 hours later when I'm going to bed. Most often he's awake. I kneel down beside him and on occasion ask him what he's thinking about. He always pauses and unless something really big is happening the next day (like Christmas, departing for vacation, etc.), he responds "I don't know".
From presentations at the Autism Society of Wisconsin's Annual Conference by the likes of people like Judy Endow, I have a pretty good idea of what he's doing. He's processing. I guess it's kind of like when I can't get to sleep because I'm worried about that presentation, the mortgage, or a sick loved one. At her keynote a few years ago, Judy talked of going to New York to places like Times Square. She talked of lieing in bed at night and reliving theprocess. She saw in incredible detail all the images, the sounds, the smells. I think that's what my son is doing in some way. His answer of "I don't know" really means he simply can't express all the things that are going on in his head. Is he reliving the past in exquisite detail or just repeating the same thought over and over like he's stuck? I don't know.
The whole concept just scares me. I try to focus on the fact that he may be reliving all the wonderful things that happen to him. But I also know he is processing the bad things. He clearly gets less sleep than other kids but this time seems to be critical for him to make sense of the world.
My hope is that he'll be able to express to me and his Mom some day what he's thinking about so that I may help him in some way work through what he's thinking and feeling. For now, I do my best to give him time to do so. I hope that's the right decision.
Sometimes putting my son to bed feels like that. My wife and I focus on having a consistent bedtime process but I know darn well he will just lay in bed, wide awake for hours. At least sitting on the tarmac I can read a book or possibly take a nap. In this case, though, I'm rarely sure what he's thinking about. I don't want to just leave on time. I want the darn plane to take off!
I check on him 2-3 hours later when I'm going to bed. Most often he's awake. I kneel down beside him and on occasion ask him what he's thinking about. He always pauses and unless something really big is happening the next day (like Christmas, departing for vacation, etc.), he responds "I don't know".
From presentations at the Autism Society of Wisconsin's Annual Conference by the likes of people like Judy Endow, I have a pretty good idea of what he's doing. He's processing. I guess it's kind of like when I can't get to sleep because I'm worried about that presentation, the mortgage, or a sick loved one. At her keynote a few years ago, Judy talked of going to New York to places like Times Square. She talked of lieing in bed at night and reliving theprocess. She saw in incredible detail all the images, the sounds, the smells. I think that's what my son is doing in some way. His answer of "I don't know" really means he simply can't express all the things that are going on in his head. Is he reliving the past in exquisite detail or just repeating the same thought over and over like he's stuck? I don't know.
The whole concept just scares me. I try to focus on the fact that he may be reliving all the wonderful things that happen to him. But I also know he is processing the bad things. He clearly gets less sleep than other kids but this time seems to be critical for him to make sense of the world.
My hope is that he'll be able to express to me and his Mom some day what he's thinking about so that I may help him in some way work through what he's thinking and feeling. For now, I do my best to give him time to do so. I hope that's the right decision.
Wednesday, April 3, 2013
Autism Awareness Month - How has my awareness changed?
I thought one way to honor my son during autism awareness month is to post a thought each day about what he and his autism have taught me. How has my awareness improved? Frankly, I could pop off 30 things off the top of my head but you'd get overwhelmed. Heck. Maybe that's the first topic - getting overwhelmed.
Sensory overload is a big deal for those on the spectrum. For my son.
A few days ago, my other two sons were struggling to understand why their brother was so upset. He was able to communicate to me that there was just too much noise. To you and I, it was just a busy household of kids playing. But, I told his brothers that it was too loud for him. It's easy to empathize a physical handicap. If he had no legs I think we'd more easily understand why the staircase would be frustrating. But, typical noise being too loud for him just didn't really compute for his brothers. To help them, I suggested that they imagine that everyone around throughout an entire day screamed. All out screaming. Me. Mom. Each other. Friends. Teachers. People at the grocery store. Everywhere. With that imagine in mind, I asked them "How would you feel by dinner time?"
We agreed to try and be more sensitive to his needs. Headphones aren't always in reach for him so we need to do our best to adjust our actions and our environment. It's a small modification.
Sensory overload is a big deal for those on the spectrum. For my son.
A few days ago, my other two sons were struggling to understand why their brother was so upset. He was able to communicate to me that there was just too much noise. To you and I, it was just a busy household of kids playing. But, I told his brothers that it was too loud for him. It's easy to empathize a physical handicap. If he had no legs I think we'd more easily understand why the staircase would be frustrating. But, typical noise being too loud for him just didn't really compute for his brothers. To help them, I suggested that they imagine that everyone around throughout an entire day screamed. All out screaming. Me. Mom. Each other. Friends. Teachers. People at the grocery store. Everywhere. With that imagine in mind, I asked them "How would you feel by dinner time?"
We agreed to try and be more sensitive to his needs. Headphones aren't always in reach for him so we need to do our best to adjust our actions and our environment. It's a small modification.
Thursday, September 27, 2012
My violinist
Mitchell started violin this school year. The beginnings of greatness! I'm so impressed with his interest and focus. The first weekend he brought the instrument home he practiced on his own 4 times. I probably don't have to tell you this but that is not normal! Most kids need serious urging to get them to practice. I sure did back in the day.
I'm learning as he goes too which is cool. Here's a short video that resulted from the question "Can you show me what you learned this week? I didn't expect a full on lesson!
Kudos to all the hard working music teachers within the Middleton Cross Plains School District particularly Mitchell's teacher - Kristine Corey. You guys work magic so keep up the good work!
I'm learning as he goes too which is cool. Here's a short video that resulted from the question "Can you show me what you learned this week? I didn't expect a full on lesson!
Kudos to all the hard working music teachers within the Middleton Cross Plains School District particularly Mitchell's teacher - Kristine Corey. You guys work magic so keep up the good work!
Thursday, September 8, 2011
What a summer!
My wife Krysia is amazing. Throughout the summer I kept thinking about how she did a great job of planning summer activities for our boys. Planning out the right mix of things to do/sign up for is always tricky. I suspect you can relate. In doing so, we think about the following:
It's a tough balance. We've overcommitted in previous summers that's for sure. I think back to January, February and March of this year when Krysia was pouring over all the options that exist, balancing dates and times and evaluating costs. What a juggling act! I think all families struggle with this no matter if your child has special needs or not but the special needs factor definitely adds a new level of complexity to the equation.
We enjoyed a variety of activities including:
I'm thrilled that our summer was fruitful, safe and filled with a well-balanced mix of activities to nurture our kids yet not overwhelm my wife and I. Now we tackle the day-to-day grind of school.
- Get them out of the house, but not too much where you're running around non-stop.
- Get them some social interaction so that they can practice social skills.
- Get them some physical activity as opposed to letting them be raised by their DS or Wii.
- Try not to lose ground on the academic progress you were able to accomplish the previous school year.
- Oh yeah, maintain a marriage and have some vacation time for yourselves too while you're at it...
It's a tough balance. We've overcommitted in previous summers that's for sure. I think back to January, February and March of this year when Krysia was pouring over all the options that exist, balancing dates and times and evaluating costs. What a juggling act! I think all families struggle with this no matter if your child has special needs or not but the special needs factor definitely adds a new level of complexity to the equation.
We enjoyed a variety of activities including:
- Camp Woodbrooke out in Richland Center, WI
- Camp Invention in Waunakee, WI
- Camp AweSum in Moon Beach near Minocqua, WI
- Peer play groups with select individuals
- Swimming lessons at the local pool
- North Branch Music Festival in Waubeno, WI
- Art in the Park at Lakeview Park
- Neighborhood Kickball at Parisi Park
- Family cottage in Sturgeon Bay
I'm thrilled that our summer was fruitful, safe and filled with a well-balanced mix of activities to nurture our kids yet not overwhelm my wife and I. Now we tackle the day-to-day grind of school.
Sunday, April 24, 2011
Tae Kwon Do And Special Needs
Last weekend Harrison and I competed in the Association of Acadamies of Martial Arts Spring Classic Tournament (AAMA) in Grafton, WI. We went there with our Tae Kwon Do school - Oh Do Kwan Tae Kwon Do - and our instructor Mr. Kevin McDaniel. It was my first Tae Kwon Do tournament and Harrison's second. One of the TKD schools in attendance was the Special Needs Academy of Martial Arts which works with kids with disabilities.
I was so proud to participate with them and, on several occasions, compete against them. They certainly didn't go easy on me! I sat and waited with my group of beginners for 30 minutes prior to our patterns and had the opportunity to speak with each of them. They were so proud of their abilities and were eager to comment about how much practice they'd be doing. It was great to see the boost in confidence and the joy on their faces when people applauded after they completed their patterns. Check out some video we captured of Harrison and I giving it our best. Take note of the young woman I compete against in our patterns. She does the best 4 Direction Block I think I've seen from a white belt. Of course, I didn't notice until I reviewed the tape afterward. Good stuff.
It was a great experience and very inspiring to see people of all ages, shapes, sizes and abilities getting out there and doing their best. My bruises are almost healed.
I was so proud to participate with them and, on several occasions, compete against them. They certainly didn't go easy on me! I sat and waited with my group of beginners for 30 minutes prior to our patterns and had the opportunity to speak with each of them. They were so proud of their abilities and were eager to comment about how much practice they'd be doing. It was great to see the boost in confidence and the joy on their faces when people applauded after they completed their patterns. Check out some video we captured of Harrison and I giving it our best. Take note of the young woman I compete against in our patterns. She does the best 4 Direction Block I think I've seen from a white belt. Of course, I didn't notice until I reviewed the tape afterward. Good stuff.
It was a great experience and very inspiring to see people of all ages, shapes, sizes and abilities getting out there and doing their best. My bruises are almost healed.
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