Passover Puzzle Piece.

source: BlingCheese.com

April is Autism Awareness Month. My son Mario has Asperger's Syndrome, placing Mario somewhere on the autism spectrum. One of the many characteristics of an Aspie is extreme rigidity in routine. Aspies can be extremely challenged when  encountering change. The onset of Passover this Friday night will present multiple challenges for Mario and his food routine.

source: Wikipedia

It took a while, but Mario finally got settled in a good breakfast routine. An egg (either scrambled or hard boiled), oatmeal and another starch (usually pancakes or waffles). We don't eat bread or bread-like starches on Passover. For Mario this means no oatmeal, pancakes or waffles for the week of Passover. Additionally, Mario's favorite (daily?) lunch is a PBJ sandwich. Sandwich and Passover go together like... the Cubs and the World Series (opening day is Thursday). Yes, there is matzah. A talented surgeon with the world's most trained hands will merely cripple a sheet of matzah while applying butter. For an Aspie, buttering r nprayers amatzah will likely lead to a crumb encrusted meltdown. There are plenty of foods available, but the only spectrum that applies to Mario is the autism spectrum.

source: Super Mario Wiki

I know how it sounds when parents whine about their lot in life. I love my son and wouldn't trade his challenges for another's challenges. Still, the prospects of a Breakfast Battle Royale with the potential of a redo the next day are daunting. We will survive, as will our Passover traditions. Mario, on the other hand may have a tough week.

Your Help.

My friend Marjorie fell down some stairs and susatined some significant injuries. Please keep Marjorie and her family in your prayers and thoughts.

Gracie's Birthday.

My neighbor, Union Jack says, "I don't understand people that humanize pets. Yes, pets are part of the family but pets are still animals." I understand Union Jack's point.

Candy was born at the Beagle Barn, near Joliet, IL on March 13, 2007. At the time, Mario was 7, just diagnosed with Asperger's Syndrome and Little Suzy was barely 3. We chose a beagle for a beagle's size and temperament with kids. We chose a purebred over a shelter dog because given our kids, we needed a dog of certain lineage. We chose The Beagle Barn because the pups were raised in the house, around a family with a family's foibles. We wanted a dog because given my Aspie's inability to make friends we wanted Mario to have a best friend. Candy was "Mario's dog" but Mommy always wanted a dog named Gracie. Mario decided we should name our dog Gracie, but retain Gracie's birth name Candy as Gracie's middle name. That's how Gracie Candy Silver became a part of our family.

Gracie slept thru the 1st night at our house and has been sleeping through the night ever since. Whenever the kids come home from school, Gracie greets the kids audibly and doesn't stop until the kids say hi to her. Gracie has been licking my face and head since her 2nd day with us and hasn't stopped (except for meals and naps). As Mario has gotten older, Gracie has taken to giving Mario a frequent tonguebath as well. Most importantly Gracie has been and continues to be Mario's best friend.

I agree with Union Jack that it's silly for people to humanize pets. Still, we have to hold off Gracie's birthday party until Saturday. Tomorrow isn't a school day for Gracie, but it is for the kids.

Happy Birthday (and many, many more), Gracie.

ROL: Confirm Terms.

ROL (Return On Life) is a soft measurement for lifestyle comparable to the hard marketing measurement, ROI (Return on Investment). ROL addresses small or simple life changes that can greatly improve quality of life. This week's ROL is about speaking the same language.

Saturday Stuff.

I had a long to-do list for last Saturday. The primary item on Saturday's to-do list was to take Little Suzy to the library to get a biography for an oral book report. Usually, when I have to take Little Suzy somewhere, Mario (my son) prefers to stay home for unfettered Wii and all things Mario (the plumber). I always ask Mario if he wants to come with, knowing the answer is usually no. Much to my surprise, Mario said "OK, We're going to the public library, right?" "Yes, Mario. We're going to the public library".

Not That Library.

I briefed the kids about a stop at Big Box Mart before going the library. When we arrived at Big Box Mart, Mario said "Dad, I don't want to go in. Can I start walking and meet you at the library?".
"Mario, the library is 5 miles away. You can't walk to the library.", I replied.
     Mario responded, "NO, the library is just down the street."
"Mario, we're going to the library on 2nd Street.", I answered.

North Suburban Branch Library, Loves Park, IL

     Angrily, Mario said, "YOU said we were going to the public library. The library on 2nd Street is the North Suburban Library."
"Mario, they're all public libraries. The library on 2nd Street is the North Suburban Branch of the public library.", I answered.
    Mario ended the conversation, "Maybe, but that's not what the sign says."
OK, But That's Not The Library You Said.
The whole public library/North Suburban Library conversation may seem like minutiae, but Mario has Asperger's Syndrome.  Aspies are very literal and often inflexible, so to an Aspie, the North Suburban Library is significantly different than the public library. These seemingly insignificant differences can end a day or waste many hours for an Aspie. On this Saturday, Mario rose above it all (after 5 minutes).  A successful library trip and a good day was had by all.

Lesson Learned.

This is a wonderful lesson Aspies can teach the non-Aspie enabled world. It's easy to assume everyone is talking about the same thing, even with simple terms. Simple terms don't necessarily mean similar and certainly don't mean the same terms. Little differences can have major implications and turn good exchanges bad. Taking a moment to confirm terms keeps life simpler and more enjoyable.

Do you have any examples of finding out something you said was heard differently than it was intended? How did everything turn out?

Everything Old Is...Just Old.

The last couple of weeks have been nice. I've had the chance to spend time with Little Suzy. Halloween, Doughnuts for Dads and just hanging out with Play-Doh has been really good. Suzy is on the express for eight years old. Mario was different (I know they're all different) at seven,  with the ensuing Asperger's diagnosis just down the road.

source: Wikipedia

Saturday, Suzy was doing her Play-Doh thing at the kitchen table while I was cutting vegetables for crock-pot stew. T.V. was in a time-out due to a joint venture between Suzy and Mario. I took the opportunity to indulge and queued up "Beatles For Sale". The boys hadn't even reached the bridge in "No Reply" when Suzy said, "Dad, why don't you play music kids like, like the stuff on Bob-FM." Bob-FM is the local we're so cool we play whatever we want format station.
     I said, "Suzy, they play the Beatles on Bob-FM".
Suzy said, "No they don't."
     "Suzy", I said, "Everything they play on Bob-FM started with the Beatles".
Suzy said, "No it didn't".
At that point I stopped talking and enjoyed the music.  Later, Little Suzy said, "Eight Days A Week doesn't make sense. Everyone knows there are only seven days in a week." At that point my head blew up.

I realize Suzy is still too young to understand that much of what we see, feel and hear is based on what others have seen, felt and heard before us. I assume as Little Suzy grows, she will gain perspective. Then again, she might subject her kids to the musical stylings of "Lemonade Mouth."

What You Say?

The whole family was in the car on the way to somewhere when my son, Mario concluded a sentence with "a word I'm not supposed to say." I replied "Well, not only don't say that word, but don't make reference to the word" (I don't remember the context, nor the intended word). I added further, "When I was your age, one of my sports heroes was Randy Hundley, because he didn't swear. Lovie Smith, the Bears coach also doesn't swear." For the sake of full disclosure I didn't include myself as a non-curser.

I don't live my life with blinders on. I expect that Mario's vocabulary is already beyond PG. I harp on the cursing because Mario is an Aspie. Mario doesn't quite understand that you shouldn't curse with your teachers or parents (due to Asperger's) though you might curse while hangin' your circle of 7th grade friends (which doesn't exist due to Asperger's). My method seems to be working. I rarely catch Mario cursing.

source: morgueFile.com

I'm hoping to help Mario build on the don't swear (often) meme. The whole concept of not cursing breaks down to 2 significant points:

• Don't do, wear or say something just because everyone else is doing, wearing or saying something. If everyone else is doing, wearing or saying something, it is no longer a statement of individuality.
• Think before your speak. Start with reviewing content before hitting send (that's simple enough, right?) and build to thinking before speaking. When involved in an emotion fueled conversation, slow down speaking to allow thought and reason time to be involved. The proper sequence is ready, aim, fire when using a weapon. Words can injure (or ruin reputations) just the same as bullets.

How about you? How do you feel about cursing in speech, print, public? What guidelines would you share with your children (or children of the world) to highlight individuality and safeguard reputation?

ROL: The Other Child.

ROL (Return on Life) is derived from the metric ROI (Return on Investment). Just as changes (hopefully small) to investment increase profitability (hopefully disproportionately larger than the increase in investment), small incremental changes in behavior can greatly increase QOL (Quality of Life). This week's ROL is about recognizing the other child.

Family Hand-Me-Downs And More.

I have ADHD. So do both my children. There should be some award given annually named for my wife. My daughter, Little Suzy has classic ADHD and the inattentiveness, impulsiveness and clumsiness that helps define the diagnosis. My son, Mario has Asperger's Syndrome, ADHD and some other organic stuff. Suggestions are now being taken for my wife's award.

Equity Requires A Fluid Definition.

When it comes to sucking oxygen from the room, Mario wins hands down. That's not a critique, that's a fact. Kids compete for attention and use of familial resources (TV in family room, for example). Mario being older and more volatile tends to win more than his fair share. On top of that, Mario absorbs more than his share of family finances. I'm not complaining. Aspergers is neither fatal nor rare. No critical surgeries (we know of that 1st hand; another post for another day), no weekly blood draws. Still, during the third meltdown on Saturday morning perspective disappears. Often, it's just not fair to Little Suzy. So...

Different But Equal.

Little Suzy is not yet 8 years old. She has a loft bed (Grandma and Grandpa bought her a good mattress for her 1st bed so mattress got recycled) with a recycled family futon click-clack on the ground level. Pink and zebra decorating thanks to Mom. A wall mounted (thanks to a neighbor, I'm not handy) TV (thanks again Grandma and Grandpa) with a DVD player (again household recycled).  Little Suzy does live in the lap of luxury, but...

Suzy's 1st bed was falling apart. My wife suggested (and I agreed) to do it once and do it right. Wife further suggested that Little Suzy's room be set up as an oasis. A place where Suzy can bring a friend to play, chat or sleep over. A place where Suzy can go hide when Mario can't be settled. A place where Suzy can be reminded that she isn't 2nd class to her brother the oxygen sucker.

3 months in and it seems to be working. Suzy spends equal amounts of time in the family room and in her special place. More importantly, Suzy know she has a place to go.

We Aren't The Only.

Everyone has Marios and Little Suzys. There are friends, co-workers, supervisors and committee members that drain a disproportionate amount of time and attention. It's vital to put the Little Suzys of the world on equal footing. Little Suzys deserve equal standing. It's good for Suzy, Mario and "parents" that Suzy gets her share. 

I've told you how Little Suzy gets her due in my world. Who are the Suzys in your world and how do you compensate? How does Suzy feel about your choices? How does that make Mario feel? How does that make you feel? What would you do differently?

Find The Good.

My son Mario, who has Asperger's Syndrome (along with ADHD and some other short odds lottery genetics) is mainstreamed in the local jr. high school system. As part of his IEP, Mario receives significant accommodations. With his accommodations and very little effort, Mario is a solid 'C' student. When Mario puts in effort he has been an honor roll student.  This wide swing always makes for some interesting parent-teachers conferences.

Mario and Little Susie

Mid-Term Reports.

When we received Mario's 1st quarter mid-term achievement report we were very excited; Mario was on track for honor roll. My wife and I are not that tied up in Mario's grades, but his sister Little Susie is at the honor roll equivalent for her age. Self esteem issues often accompany Asperger's and ADHD. My wife and I both thought it would be good for Mario's self esteem to have some acknowledgment for his scholastics, especially since his sister excels academically*. Needless to say all four of us (with some coaching) were amped up for 1st semester conferences.

 A Lesson From The Teacher.

The absolute highlight of the conference was meeting Mario's language arts teacher. We found out that Mario was one of only two students that would receive an 'A' for the quarter. Great news but this wasn't what thrilled my wife and I, though. Mario's language arts teacher was also his case manager (responsible for making sure all Mario's accommodations in Mario's IEP were being met). After we introduced ourselves, the language arts teacher/case manager asked "So, what's Mario's gift?" My wife and I didn't understand the question. I thought, We're not even to Thanksgiving and this guy is asking about holiday gifts?" The teacher saw our puzzled look and said, "I'm Mario's case manager so I know he has Asperger's and we all know the challenges someone with Asperger's faces. I'd like to know if you've found his gift**, the things that compensate for his challenges." I knew right then, that Mario was lucky to have this gentleman as a teacher and a case manager. This guy gets it.

In Real Life.

I recall that conversation with Mario's teacher often. I think it's human nature to dwell on what we aren't getting or what isn't happening. Similarly, I often evaluate people in terms of their specific weaknesses, in terms of who these people are not. But frankly, we all have things we wish we could be better at accomplishing. I find my days happier, more fulfilling and more successful when I look for the best in those around me and think of those I love (and even those I merely know) in terms of who they are and what they do best. I try and incorporate Mario's teacher's lesson as often as possible.

Do you find yourself gravitating towards the negative? How do you accentuate the positive in those around you? How do you feel when you are evaluated based on your weaknesses as opposed to your strengths? Do you do better when you are complimented on what you do best? Or do you respond better to negative criticism?

*By the end of the year Mario had enough of academic excellence and wound up with a solid 'C' average.
** Mario's primary gift is his  rote memory. He remember many facts after seeing them only once. In grammar school he never studied for spelling tests and usually received a perfect grade. To this day he remains a visual learner.

Emmy Awards. Somebody Got Robbed.

In my continuing effort to stay behind the curve, I seek redress on a grave injustice served at last week's Emmy Awards. Peter Dinklage won the Emmy for Best Supporting Actor in the series "Game of Thrones". I am completely unfamiliar with both the actor and the series. Still I am completely comfortable in saying that the best supporting actor in a drama series received neither the award or even a nomination.

The Emmy Should Go To...

Source: Wikipedia

As a fan of "SportsNight", "Six Feet Under" and "The Gilmore Girls" I should have taken to "Parenthood" immediately. For inexplicable reasons, I didn't find the show until the middle of the first season but due to the magic of Netflix, I caught up immediately. In the midst of an incredible ensemble is an actor that doesn't appear to be acting. Max Burkholder as Max Braverman isn't playing a child with Asperger's syndrome; he is a child with Asperger's Syndrome.

He's Just Acting, But... 

Before I go further, Max Burkolder does not have Asperger's Syndrome, though it's hard to tell. As the parents of an Aspie, neither my wife nor I were sure Mr. Burkholder was acting in his roll as Max. He has the manifestations of Asperger's (inflexibility, lack of eye contact while conversing, mastery of minute details) down pat. His timing as he enters meltdown mode is impeccable. His (lack of) dealing with social situations and unspoken communication is pitch perfect. Max's portrayal of Max should be recognized by his peers in the acting community.

Older, Not Nearly As Good.

There have been adult characters with Aspergers on TV in the recent past. Mary McDonnell's Dr. Dixon on "Grey's Anatomy" was two-dimensional. Christian Clemenson as attorney Jerry "Hands" Espenson on "Boston Legal" started well but soon went over the top ("Boston Legal" was not noted for continued nuance).  There have been other characters with Aspergers as well, but none portrayed as well as Max Braverman by Max Burkholder.

So I now ask you: Do you have any other examples of outstanding representations of characters with challenges? Do you agree with my thoughts about Max Burkholder? Any ideas on the next step to getting Max Burkholder an Emmy?

Ralph Waldo Emerson Trust 30 Challenge: Alive-est, With My Kids.

This Trust 30 prompt is from Sam Davidson. The charge is to recall a recent time when I felt most alive. Record the scene, feelings, even the smells. That recollection recorded can serve as motivator whenever I hit the wall.

Summertime and the Livin' is???

This summer had all the requisite protocol for disaster. The kids weren't going to camp, my wife rejoined the workforce (2nd shift, no less) and July was hotter than a pizza oven. My wife had always originated kids activities, but now it was my turn. I wasn't worried about taking care of my kids, but keeping them occupied and engaged well... I was a bit concerned.  Then voila, the obvious smacked me in the face and a plan was hatched.

It's Fun to Play at the YMCA.

We  were lucky enough to be gifted a summer membership to the local YMCA. In the middle of the heat wave I checked the YMCA pool schedule and found that Tuesday and Thursday evenings were conducive for a family swim. In order to beat the heat and help the kids burn some energy, I decided we would go the next night, Thursday.

The Waiting is the Hardest Part.

Thursday was a day full of excitement. The kids wanted to get ready for the pool at lunchtime, even though we weren't going until after dinner. I set 4 PM as the get ready time to avoid them waking up the next pool day and going from pajamas to swimsuits. The picture of my daughter coming to dinner in her pink cover up, pink swim goggles and purple backpack will stay with me forever. And that was merely a beginning.

Jump in, the Water's Fine.

I had some concerns, especially about taking them into water without my wife's help. The kids are 51/2 years apart and both are blessed with ADHD. Additionally my son has Asperger's Syndrome. Turns out, I had nothing to worry about. Like most kids, my kids love the water. This wasn't always the case with my son but this summer was different. We all played catch. My son and I watched my daughter go down the waterslide repeatedly.  My son found a rubber duck which I proceeded to put on a duck shaped hard foam sponge creating a rubber duck on a duck raft. (This became our 1st thing in the pool ritual).  My daughter even made up a game: "Floatie in the Middle". Instead of "Monkey in the Middle" the one in the middle held up a swim noodle in a semi circle and the ball had to pass thru the noodle on the way to the other player. These Y trips were among the best parts of summer. Whenever I smell chlorine, these swim nights will always come to mind. I consider this event(s) an example of how my family and I can rise to an occasion simply by getting with the program. I put aside my concerns to get things done. The results were better than I could have imagined.

What about you? Any examples of how you forged ahead and felt great?