Summer Wind

Mark’s paternal grandmother Margaret went to bed as usual on Friday, July 19th.  My birthday.  Sometime in the night she crossed over, warm in her bed.  Though she was 92 her passing took us all by surprise.  She had been doing so well.  It was exactly the way she wanted to pass.  She told us so.  Can you imagine, one moment here and the next – gone?  We should all have such a sweet sending off.

Our hearts and thoughts have been in Iowa since we got the news.  In an effort to celebrate life and recharge our batteries, we headed off for a day at the Shore.  Ocean City, NJ never disappoints. 

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In the coming weeks we will make the 18 hour drive to Iowa.  We will attend Mark’s 20th high school reunion, visit with family and friends, and then Alexander and Helena will stay in Iowa for a long visit when we return.  Sophie will enter an intensive feeding program at the children’s hospital from 8am-5pm, Monday – Friday for the entire month of August to train her to eat.  Sophie and either Mark or I will be at the hospital for the duration. 

We are in the midst of grief and apprehension, yet all we can do is move forward.  We boogie board.  We body surf.  We build sand castles and work so hard to create memories filled with joy for our children.

Wood Rot & Carpenter Bees

When we bought our home two years ago we didn’t have rotten wooden window frames, or so we thought.  Being from the midwest, we were unfamiliar with the damage that carpenter bees can do on fascia boards.  We would quickly learn about both.

When a part of a window frame swung off the house this spring, we knew we had a problem.  When we were bombarded by low flying Cessnas (dang loud, dumb carpenter bees) and had to avoid their falling larva from the roof (yuck), we took a close look and found that they had pretty much destroyed a number of boards at the roof line by drilling holes for their nests.

Grumble, grumble.  After taking a few bids, we settled on a company called PJ Fitzpatrick to help us.  We would need the rotten wood replaced, new gutters, soffits and fascia which would be capped (but with wood grain design) to prevent the dang bees from being able to nest and to protect the wood from rotting again.  This type of work is way above our skill level so we were happy to let the experts have at it.  Frankly having professionals help us makes me feel like I’m actually a grown up.  Weird, I know.

They finished at 5pm today, just in time for us to set up for our 4th of July party.  They got the job done in two days and spent much of it working in the rain.  The crew of hunky Russian guys were skilled, polite, cleaned up after themselves, and I highly recommend them.  I sent them home with goodie bags of left over candy from Sophie’s 6th Candyland theme birthday party (which will be another post as soon as I get more pictures from the other parents).

So before I put up our decorations for the party, I decided to quick post the before and after shots.  The transformation is amazing and better yet, Mark should have no reason to be on the roof spraying the dang bees!  Peace of mind, baby.

BEFORE

*basement and 2nd floor windows had horrible wood rot unrelated to the dang bees.  Look at the damage the dang bees did to the wood!

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AFTER

So pretty!

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Ladies Who Lunch

Helena, (A.K.A. the Schmoog or Schmoogie) and I had a great day together.  It started in court for my hearing to contest two tickets related to our annual van inspection and emissions certification.  She was great and charmed the police officer that we worked with.  We won our appeal!

After our brief court appearance, we decided to hit up our favorite thrift stores.  Mark, myself, and Helena love thrifting.  To us it is a treasure hunt and an adventure.  It’s not wise to head out with a particular item in mind, but rather a “let’s see what they’ve got today,” attitude. 

Helena and I like to peruse the toys, jewelry (pins/brochures in particular), hats, books, and antique furniture.  I also love to find the exceptionally strange or unique items that pop up from time to time.

After a quick deposit at the bank between thrift stores, I decided to take us out to eat for lunch.  No place would suffice except our favorite Indian cuisine restaurant, Ekta.  If you know our family, you understand that Sophie and Alexander have very limited foods that they will eat.  Mark, while he has expanded his palate considerably in the last decade, is still a mid-western meat and potatoes guy.  Schmoog, however, enjoys a wide variety of food.

As we waited at our table by the window, she breathed deeply and listened closely to the music.  She exclaimed her joy with the rhythm and declared that the instrumental songs must be about Jesus.  I marvel at the way her mind works.  The smell overwhelmed her and she became patiently impatient for our meal. We started with vegetable samosas with mint and tamarind chutney. 

Then, we split basil naan, basmati rice with chicken tikka masala and saag aur paneer.  “MmmmMMMmm,” she declared over and over.  We stuffed our bellies and she delighted over a simple slice of orange.  Enough was left over for 2 more meals.  Yum.  As we ate we started getting texts, fb posts, and phone calls about the tragic building collapse in Philly.  A building adjacent to the Salvation Army Thrift Store collapsed and trapped a number of people.  I had recently posted on fb that we were thrifting and people were worried.  Have I mentioned lately how much we love that we are loved?

Logy (loooo-g-E means happily stuffed) after our feast, I thought we should head home for a nap.  Instead Schmoogie asked (repeatedly) to go to a candy store.  So we did.  On the drive home she munched on Swedish fish and I on a dark chocolate covered graham cracker.  Then we snuggled and napped.  We needed this kind of low key day. 

I watched the 11pm news conference that night with Major Nutter about the building collapse who said, “We are a pretty tough city and we are quite resilient.”  Nonetheless our prayers go out to those who are seriously injured or who lost loved ones.

Cub Scouts Awards

We enrolled Alexander in Cub Scouts in the fall.  As a Wolf he interacted with new and old friends and learned new skills.  Tonight we had our end of year awards ceremony and graduation to the next level.

This is the face of pride in accomplishments.  He’s now a Bear and we are excited to continue with scouting.

Making a Difference Award

The following is the text of the Delaware County Right to Education Task Force nomination for a Making a Difference Award that I submitted for Sophie’s friend Eliza.  The Making a Difference Award recognizes staff members and students who have gone out of their way through their work, support, or friendship to be accepting, understanding and make sure to include children of all abilities. 

“My daughter Sophie, who is in kindergarten at XXXX Elementary, happens to have a developmental disability. Her placement is in the regular kindergarten classroom with supports and services pushed into the class. As excited as we were about our daughter going to school, we were also nervous. Would she be happy? Would she make friends? On the first day we instructed her brother Alexander, who is in the 2^nd grade, to sit next to her on the bus so that she wouldn’t be alone. He held her hand and the two of them got on the bus together.

From day one Sophie and Eliza became friends. Eliza is a fellow kindergarten student who does not have a disability. I have watched how naturally this friendship developed into something really special and ordinary at the same time. Parents of children with a disability can relate that the most basic experiences of life don’t always come easily for our children. Having a true friendship is something we dream of for our kids, but often fear that it might not happen. 

Our first clue that kindergarten was going to be ok was during the first week of school. As Alexander and Sophie boarded the bus together, we noticed a group of her peers sitting in the front seat next to Sophie’s safety seat. They were excited to see her and clamored over which one of them would get to sit next to her. The same thing happened shortly afterwards when Sophie arrived at Back to School Night. We watched as Sophie ran off with her peers, leaving us behind. It became routine and was apparent that these friends were in it for the long haul.  Every day they are excited to sit with her on the bus.

Eliza, in particular, has a special friendship with Sophie that I’ve been blessed to quietly witness. On the many days that Sophie has stayed home sick this school year, as we said good-bye to Alexander on the bus Eliza was visibly disappointed and asked about her friend. In class, Eliza and Sophie are frequently together. They often sit close during story time and next to each other at the tables during projects. When it is time to put materials away, Eliza gently guides Sophie to their cubbies as they scamper off to the next lesson. During one lesson, the children were to draw a picture and write a story. Sophie worked with her aid while Eliza sat next to her. Eliza drew a picture and wrote about the two of them playing together. This friendship extends outside of school as well. When the girls are at a birthday party, for example, they play together beautifully.

Eliza is a beautiful child. She accepts Sophie and understands her in a way that I as her mother or the professionals that work with Sophie can only strive to see her. Eliza does not see through a lens of ‘disability.’ She does not care that Sophie has a very limited vocabulary and learns differently. She knows nothing of IEPs, social goals, or modified curriculums and yet she can teach us all about inclusion because it has come naturally for her. She has no idea that her love of my daughter has been a dream realized. She’s a little girl who loves her friend. How amazing and how ordinary.”

I’m thrilled to share that Eliza won!  The banquet took place this week and it was a beautiful event.  Our family joined with Eliza, her parents, two bothers, 3 grandparents (who travelled to get here), and Eliza’s former pre-K teacher.  The girls were glued together and when it came time for them to go on stage, for Eliza to accept her award, and for them to pose for a photo, they both did great!

This is a special and unexpected friendship that we will treasure always.  Although I had begun to imagine watching the girls grow up together, her father has finished his residency and accepted a position in another state.  They will move away this summer but will never be forgotten.  Many tears were shed that night and not all of them were mine.  Eliza is a beautiful girl who comes from an amazing family and we are blessed to know them.

Our New/Old Normal, part 3

continued from part 2

I went back to the office and as I worked my mind kept churning the same questions over and over.  How could I have missed this?  How could we have explained away so many things?  How could we look to his father as a model for why it was normal?  And then it hit me.  Hard.  I stopped typing.  I stopped breathing and began to shake.  I knew the truth before the thought, which felt gently whispered in my ear, was fully formed.

I sent Mark the following text to which he responded immediately, “yes.”  “Mark, have you thought about whether or not you or I have Asperger’s?”  I couldn’t just say, “Dude, you totally have Asperger’s,” could I?  He responded, “Yes.  Most definitely.  Did it ever strike you as odd that I can concentrate on writing a vodka book for years on end, or focus on driving for 20 hours straight, but I can’t seem to keep straight our schedules one day to the next?  I’ve certainly thought about it.”

That was the moment.  The big one.  The ground shifting under my feet insight to the reality of our lives that have completely changed my view of the vast complexities of human existence and our family truths.  As it turns out we know quite well what Asperger’s looks like and it doesn’t resemble Max from the great tv show Parenthood AT ALL.  Except a little, depending on what you’re looking at. 

A flurry of texts between myself and my husband continued through the day recounting his traits that seen through the lens of Asperger’s made perfect sense.  These are things that I both love, love, love about him but also the things that drive me up a wall backwards.  Mark completed a series of Asperger’s questionnaires and would text me the results each indicating a strong likelihood of Asperger’s with something like, “Huh. Who knew?”  There is a reason we think of Alexander as little Mark.  He is little Mark.  He called his mom who said she understood some of the things she saw as he was growing up and beautifully said, “but this doesn’t really change a thing.” 

Except it does.  It changes everything and I will be forever grateful that my son was diagnosed with Asperger’s.  Now we can learn more about it so that we can support him in the ways that he needs.  Facing this reality which was at first a trip to Hell is now just our new/old normal.  The best part, the BEST part is the fairly certain conclusion that we (admittedly as lay people) came to about Mark likely having Asperger’s as well.  He says this is probably why it didn’t faze him much when we learned about our son’s diagnosis.  Somehow he felt the truth of it on an unconscious level and KNEW that despite the challenges, the benefits and joy are real.  In that millisecond when the thought was whispered in my ear, my heart lightened.  My grief left me and I began to laugh so hard I cried. 

People say all the time that people with Asperger’s can lead happy and full lives and we KNOW this to be true.  We live it every day.  Just ask my husband, the mighty professor, author, hilarious, affectionate, kind, father, and friend about his happy and fulfilled existence.

Our journey to accepting (with relief and even joy) our son’s and possibly my husband’s diagnosis of Asperger’s couldn’t have happened any other way.  It was all perfectly timed.  We have our precious daughter Sophie to thank for teaching us about our own disabled attitudes and our subsequent metamorphosis.  As humans, we all are different and different does not equal less than.  We all have different skills, interest, strengths and areas that we need support.  I thought I understood that but I didn’t truly get it like I do now. 

This is the global shift that is happening.  As a community, people with disabilities or differences and their loved ones are standing together to demand that the rest of the world get on board.  We are blessed to be a part of it.  I am so proud of my family and my husband for having the courage to look inward.  Despite the struggles that will surely arise, I am GRATEFUL for this life. 

to be continued…

Our New/Old Normal, part 2

continued from part 1

It took a couple of months to finish and the final report itself is 21 pages long.  The school psychologist had Alexander self report, she had his teacher, OT and ST therapists complete evaluations, she conducted classroom observations, and Mark and I complete questionnaire after questionnaire.  The tests bore out what we already knew.  His IQ is 111 or above average.  He has a superior vocabulary but delayed processing speed.  Areas of significance include emotional control, initiation, working memory, planning/organizing, organizing materials, and monitoring.  ADHD was ruled out but attention problems were highlighted as well as adaptability, functional communication, attitude towards school, and activities of daily living. 

Perplexed by his speech pattern, his ST called a stuttering expert at CHOP who indicated he has seen the same pattern in people with Autism.  This was about the same time that the latest series of parent questionnaires started to scare me.  His pediatrician did not think it was ADHD and began asking questions that scared me.  We were headed in a direction that I was desperate to stop.

That’s when we got a phone call from the school psychologist and speech therapist.  They didn’t want to send home the parent questionnaire for Asperger’s without giving us a heads up, which was a good move.  Three days later the reports were completed and we were told that “results of the social-emotional and behavioral assessments along with the testing results, the data from the questionnaires, as well as the observations indicates that Alexander demonstrates behaviors that are consistent with the characteristics of children with Asperger’s Syndrome.”  

I spent the weekend alternating between crying, raging, drinking wine, cursing God, painting my kitchen blue, researching Asperger’s, bargaining with God, searching for ways to blame myself, and then landed firmly in denial.  Mark was unfazed and that fazed me.

How could this possibly go unnoticed for so long?  Taken separately each of the traits that I now suspect are tied to Asperger’s could be explained away.  Much of them were exactly how Mark was as a child.  The trains obsession, the picky eater, the meltdowns and on and on.  I became depressed and felt like such a failure.  Still I dragged my butt to work and commiserated with my colleagues who also work in the disability field. 

It was a miserable few days and I was so disappointed in myself that I couldn’t stop looking at my son differently.  Not negatively per se, but with eyes that know too well the struggles that go along with disabilities and the immense load of work that had just landed on my shoulders to ensure he will have everything he will need.

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