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?

Gifts, Memories and Today.

source: Amazon

As I posted previously, Chanukah with my family was rather disjointed due to a 2 week contract for me. We finally exchanged gifts as a family (Mommy, Mario, Little Suzy, Gracie the wonder beagle and me) on New Years Day. I scored a major haul. Texting gloves (for texting while driving in cold weather), a tripod for my smart phone (hello, vlogging) a huge bag of Belly Flops (all the flavors, all the calories, a fraction of the price) and the Tom Lehrer collection (including a DVD of a concert from Oslo, hopefully subtitled).

Matt Jaffe

I was turned on to Tom Lehrer in junior high by Matt Jaffe (if you enjoy hiking, check out Matt at about.com). We spent hours listening to That Was The Year That Was. I even went with Matt and his family to see Tom Lehrer for a McGovern fundraiser. In retrospect, McGovern needed a vote raiser. I understood much (not all) of Lehrer's context and the time spent with Matt and Tom certainly shaped who I am today.

As I was listening to the CD yesterday, I realized that Mario is the same age I was when I started listening to Tom Lehrer. I know Mario wouldn't listen to Tom Lehrer with me. Mario is very young for his age and being an Aspie, Mario can't share my sense of humor. I know Mario picks up on household values from our conversations. Still I am concerned about how Mario will shape his views on the world around him. Friends help kids with defining themselves (especially during those years when parents know nothing) and being an Aspie, Mario has no friends. Finally I know there are no simple answers and things work out. Still, I can't help but worry.

Any recent gifts that bring up old memories? Any worries about your kids that you like to think you can change, but really can't change?

Robbed At Church.

Those expecting a rambling anti-religion screed will be disappointed. Denizens of organized Christianity are not only heroes of this post; these fine people serve as a shining example of customer service to money hungry materialists everywhere. The title refers to the theft of Little Suzy's coat while we volunteered at a local church this past Saturday.

Why Was I At Church?

14 months ago a friend referred me to the NonWorking Networkers of Westminster Presbyterian Church.   The Networkers are an all-sectarian group, part of the church's outreach. The Networkers group has provided emotional and physical sustenance to me and my family. One of the Networkers activities is to join the church in packing food for Christmas for local needy. The packages are picked up and distributed by Rockford area social service agencies. This year I brought Little Suzy with me to help pack.

It's Good To Help.

Packing started at 8 AM, coffee and doughnuts at 7:30 AM.  We arrived at 7:40 AM. Little Suzy was excited about packing food for the needy and really, really excited to begin with a doughnut. Suzy is too young for coffee (and I'm a coffee snob/sissy) so we brought our own drinks, hot cocoa and a mocha.

At 8 AM the chairperson, Sadie, gave a brief overview of the packing procedure. Both hands are necessary for the assembly line so I ducked out and put the mugs Little Suzy and I had brought on the shelf over our coats. Pastor Pasteur offered an invocation and the packing began.

Daddy, Where Is My Coat?

Westminster has run this project for a number of years so the packing went quickly. In under an hour 300 packages were assembled and it was time to go home. Suzy and I went to get our coats, but Suzy's coat was gone. We both looked in all sections of the coat area, but the coat wasn't anywhere. While looking for Suzy's coat, I heard another woman describing her purse which was apparently stolen, too.

I found Sadie and told her about Suzy's missing coat. She apologized profusely and took my name and a description of the coat. Suzy and I returned to the packing area to wait, in case someone had accidentally put on Suzy's coat. While waiting, Pastor Pasteur found Suzy and me. Pastor Pasteur apologized and made sure the church knew how to reach me.  As more people left the church, it was obvious the coat would not reappear. Suzy and I looked through all the coat areas one more time but didn't find her coat. I put my coat on Suzy (tried for a picture but as a young clothes horse Suzy wasn't buying) and we drove home.

The Day Improves.

We got home, told Mario and I texted Mommy at work. Suzy kept it together at Westminster, but once home the tears flowed. Little Suzy was a bit overwhelmed by her coat getting stolen, from a church, while packing food for the needy. I explained that someone must have really needed that coat and Suzy accepted the explanation. Suzy and I settled in.  I figured we would be going for a winter coat when Mommy's work day concluded.

Within the hour the house phone rang. It was Sadie arranging to deliver a gift card to replace Suzy's coat. While talking to Sadie, the head of the Nonworking Networkers called my cell phone to tell me the church wants to replace Suzy's coat. In the ensuing conversation, it was obvious that at least two people from the church wanted to arrange for Suzy's coat. I made sure the church Deacons weren't duplicating effort and made arrangements to pick up the gift card from Sadie as our house was not receiving guests on Saturday. Before Suzy and I reach the car to go to Sadie,  the friend that had sent me to the Nonworking Networkers called for Little Suzy. Our friend wanted to apologize to Little Suzy for the theft of her coat and make sure Little Suzy wasn't overwhelmed by the experience. Suzy had made peace with the theft of her winter coat and how could she be overwhelmed with so many people working to make things right?

The Coat.

When we arrived at Sadie's, Sadie had the gift card and a pair of peace sign earrings. The earrings were the perfect size for Suzy's ears and Little Suzy loves peace signs. Mommy took Suzy to Kohls (biggest sale of the season) and was able to get her the exact same coat. Grandma and Grandpa told Mommy to get a backup coat, on them. Upon hearing the story of the stolen coat, the clerk at Old Navy took 10% off the purchase of the back up jacket Grandma and Grandpa bought. Back at home, Suzy modeled both coats and started talking about going back to Westminster next year to pack Christmas food packages.

Lessons.

If you have ever chaired a major project you understand the adrenaline rush to completion and the ensuing crash when finished. Once the project is over you either want to unplug or write the evaluation then unplug. Sadie on her own behalf and that of the church didn't do that. Once Sadie and Pastor Pasteur had overseen the distribution of the food packages to the various social service agencies, they checked the church once more for Suzy's winter coat. Then Sadie bought a gift card, found my phone number and put the rest of day on hold while waiting for me to pick up the card. Sadie also found the earrings, providing immediate gratification for Suzy.

Have you ever been on hold for 35 minutes reporting an outage to Comcast (or pick a company)? After you lose service for 3 1/2 hours ever had Comcast reduce your bill by $1.37 but only because you stayed on hold another 35 minutes the next day? Do you think Comcast (or pick a company) could learn a thing or fifty from Sadie and the hierarchy of Westminster Presbyterian Church?

Thank You.

I was reminded of a couple of lessons by Sadie's reaction to the theft of Suzy's coat.

• For every creepy story that gets tagged to organized religion, there is at least one good story left untold. So I told this story.
• When you think something is the right thing to do, the right time to do the right thing is right now. It may still be right to do the right thing tomorrow, but it's righter to do the right thing today.

Suzy is writing a thank you note to the church Deacons. I guess I just wrote a thank you note, too.

Thankful Every Day.

We got a call from Mario's pediatric neurologist in November, 2004. Mario's head CT didn't look right (Mario was still having a terrible time potty training at 5 1/2, so everything was being reviewed).  We were referred to a pediatric neurosurgeon, Dr. Standish, at Children's Memorial Hospital in Chicago.

It's All In His Head.

source: morgueFile

Dr. Standish is kind and soft-spoken. Dr. Standish doesn't own a TV. If you have to see a pediatric neurosurgeon it's comforting to know he's not staying up late, hooked on "Survivor". Dr. Standish pulled up the CT and showed us a blob in Mario's frontal lobe. Dr. Standish believed the blob to be an arteriovenous malformation (AVM). Mario was asymptomatic and with the neurosurgery suite at Children's being upgraded, Mario would not be scheduled until renovations of the suite were finished. Dr. Standish expected to call us with a late January, early February date. As it turned out, Mario didn't get scheduled until April, 2005.

The Day Finally Arrives.

Dr. Standish wasn't sure if surgery was required or even possible. CT scans are a big improvement over 2 dimensional X-Rays, but CT scans don't show everything. So we took young Little Suzy to Grandma and Grandpa, packed a weeks worth of stuff (Dr. Standish told us normal recovery time from brain surgery was about a week as a inpatient) into the Caravan and headed to Children's Memorial Hospital.

Good News.

We arrived at the hospital and went through the normal check-in procedure. After a while, the staff carted Mario to the neurosurgery suite and Mommy and I went to the cafeteria for a little sustenance. Mommy and I checked in at the OR waiting room after a short breakfast and settled in for what we expected to be a long day. I hadn't read more than two pages when the radiologist struts in all gowned up, looking for us. "Good news", he says. "It's not an AVM. Dr. Standish will explain in detail, but what Mario has doesn't require surgery. There is a small chance the artery could rupture so we will have to monitor the artery annually (now biennially). Mario will have to lay on his back for six hours and spend the night here, but you can all go home tomorrow morning." Mommy and I exhaled, got Mario through the six hour lay down, spent the night at Children's and we all went home the next morning.

Post Script Surprise.

I hadn't told many people about Mario's pending surgery, but there will still a few phone calls of joy to make. Mommy and I each called our sides of the family. I called our Rabbi and then I called Godfrey, the best man at my wedding. "Godfrey", I said, "Good news. No surgery for Mario."  "Hey Barry", Godfrey interjected, "I can't stay on the phone long. I'm at Evanston Hospital. Hortense (Godfrey's wife) is in surgery. Seems she has necrotizing fasciitis (flesh eating bacteria). The doctors were able to stop the spread and now they are removing a small amount of dead tissue from Hortense's hip. Can we talk tomorrow?" Necrotizing fasciitis is so rare that it is often diagnosed too late to save a patient's life. So on that day in April, 2005 I could have left the hospital (after Mario's surgery) to arrange a funeral for my best man's wife. Instead I took my son home the next day and after getting Mario home, called Godfrey to talk about the Cubs.

It Can Always Be Worse.

Since that day in April, 2005, I've had good days, crazy days, quiet days, happy days, sad days and tough days. But since that April day, I've never had a bad day. That's why I'm thankful every day.

From me and mine I want to wish you and yours

HAPPY THANKSGIVING.

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."

Ralph Waldo Emerson Trust 30 Challenge: Self Portrait.

This Trust 30 prompt is from Matthew Stillman. The challenge is to: a) intentionally look less than my best according to societal norms b) capture the "look" in a photo and c) blog about it.  And away we go.

I Am Not A Morning Person.

I get up at 5:20 AM weekdays. Why? Because my 2nd grade daughter, Susy* has to catch her school bus at 6:45 AM. She gets up at 5:40 AM. I need to be up and moving before Susy, otherwise I spend all morning catching up. My son, Mario** doesn't need to get up until 7:30 AM, so after I put Susie on the bus, I go for a 35 minute walk.

Wednesday, Sept. 7, 2011
6:33 AM

Warts And All.

Yup, that's me via my MyTouch 4G. No shave and that's the t-shirt I slept in. I probably haven't brushed my teeth, either. Hopefully my Andy Warhol 15 are not about to happen.

Comfortable In My Own Skin.

When I leave the house, I try and look presentable. T-shirts and gym shoes occasionally, torn jeans almost never.  If I'm specifically going to meet someone or network, I'll dress nicer. Shaving is a must and if I have enough notice I'll get a haircut (insert own joke here).

What's The Point?

I've never been particularly concerned with fitting in and I don't care if people don't care for my choices. Still, since the rest of the world is in the "You don't get a second chance to make a first impression"club I have to act accordingly. I do live in this world. Besides, I do feel a bit sharper when I dress with care. Sometimes that little extra edge is all it takes to carry the day.

How do you see yourself? How do you display your self image? Do you make a point to dress up, dress down or just put on whatever is handy?

*not her real name, named in honor of Susy Johnson, Jeremy's cutting edgy little sister on Phineas and Ferb.
**not his real name. My son's an Aspie and one of his areas of expertise are all things Mario, hence the name.