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.

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.

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.

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!

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:  

1. Get them out of the house, but not too much where you're running around non-stop. 
2. Get them some social interaction so that they can practice social skills. 
3. Get them some physical activity as opposed to letting them be raised by their DS or Wii. 
4. Try not to lose ground on the academic progress you were able to accomplish the previous school year.
5. Oh yeah, maintain a marriage and have some vacation time for yourselves too while you're at it...

No pressure really.  Can you sense my sarcasm...

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:

1. Camp Woodbrooke out in Richland Center, WI
2. Camp Invention in Waunakee, WI
3. Camp AweSum in Moon Beach near Minocqua, WI
4. Peer play groups with select individuals
5. Swimming lessons at the local pool
6. North Branch Music Festival in Waubeno, WI
7. Art in the Park at Lakeview Park
8. Neighborhood Kickball at Parisi Park
9. Family cottage in Sturgeon Bay

What I thought was great about this year was that the planning effort also fired up an effort on our part to raise awareness in our town about the lack of options for kids on the spectrum (and non-sports loving kids in general).  So many of the activities are sports driving and team oriented not to mention facilitated by people (often teens) that aren't trained to handle kids with special needs.  Once again Krysia got to work.  She put together a meeting in our living room one afternoon this spring that was attended by our State Senator - Jon Erpenbach, City of Middleton staff as well as about a dozen concerned parents.  That was a great meeting to share concerns and raise awareness. Action items came out of that meeting that are still being pursued including finding meeting space for the group Middleton Abilities Group Improving Community (MAGIC), engage with new leadership at the City to look for additional recreational options that better suite our kids, and continue with positive dialog.

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. 

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.

The Poop and Run

Potty training is a rite of passage for every parent and their child.  Unfortunately, the process is notoriously difficult for kids on the spectrum.  We've certainly had out battles.  I used to joke with family and friends that I was going to write a book on potty training entitled "How To Potty Train Your Kid In 3 Easy Years".  It would have sold millions...

We are fortunate in that all 3 of our boys, whether on the spectrum or not, have figured out the benefits of potty training.  There was a time, however, that I seriously doubted if the time would every come.  What we deal with now is what I've affectionately come to call the "Poop and Run".  It's namesake is the criminal "Hit and Run".  You know that feeling you get when you come out of the grocery store to find your car door dented and nobody around to own up to it.  It's a crappy feeling (pun intended).  That sense of disrepect.  The anxiety over the fact that you now have to deal with someone else's mess.  You look around to see if someone is peering at you from around the corner but there's never any sign of anyone.  You look for clues.  Who did this?  When did it happen?  Why didn't they flush?  There's not even any toilet paper in the toilet?  Geez.

But then you resolve to the fates and the good samaritan in you kicks in and you think "maybe they didn't even realize it" or "maybe they just don't know how to drive yet".  So you buff out the scratch or dent and you forgive 'em and move on.  You flush.  You tiddy up.  Then you do your business.  It could be worse.  You could spend days on horseback in northern Mongolia to meet with a shaman of a tribe of nomadic herdsmen.

An obscure reference you might think.  Mongolia?  Shaman? What are you smoking Paul? Oh contraire.  I watched "The Horseboy" with my wife the other night.  The Horseboy is a documentary about a couple and a 6 year old boy named Rohan.  Rohan is on the autism spectrum.  He's got serious issues with incontenance and like me, his parents coined their own phrase of "code brown" to refer to his regular accidents.  Rohan has an uncanny relationship with horses and he is cured of his incontenance after they take an adventurous trip to Mongolia and meet with shamans.  You can believe in shaman or not, but the immediate results don't lie.  It worked. 

The story illustrated so clearly to me the extraordinary lengths we'll go to in order to help our kids be it with pooping, speaking, socializing or anything inbetween.  I guess dealing with the poop and run isn't so bad after all.