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.

continued HERE

Our New/Old Normal, part 1

Our son Alexander is eight years old and he was just diagnosed with Asperger’s Syndrome.  Many shorten it to Asperger’s or AS.  Read about it HERE. 

Hind sight being 20/20, it seems perfectly obvious that Alexander has likely had Asperger’s his whole life.  Mark and I have spent a lot of time combing through memories of our son with a new lens and saying, ah ha! over and over again.  I’ve been playing the game Asperger’s or Alexander?  Is his demand for peanut butter sandwiches on wheat bread with the crusts cut off served for two meals a day a result of Asperger’s or is it just a preference?  What about this preference or that behavior?  I’ve started a list that is quite long.  I don’t know why but I suppose it has something to do with my own understanding and acceptance of this new/old normal. 

We are experts on Asperger’s and yet we know nothing about it.  I think it’s safe to say that about the specialists as well.  Looking back I can recall incidences at a very young age that point to Asperger’s.  Alexander’s food restrictions began as a toddler.  One night rather than eat one bite of a vegetable, he waited us out and eventually fell asleep under the table.  As we carried him to bed for the night I was so frustrated with my stubborn son.  I realize now that this wasn’t him being stubborn.  This would become our pattern.  Alexander would or would not do something and I would be frustrated with his stubbornness.  So it is a relief to finally be given a tool with which to understand my child in a way that I could not prior to this diagnosis.  Relief, however wasn’t my initial reaction, but I’ll get to that.

Looking back there were signs all along.  Even in preschool he had difficulty interacting with his peers.  He has friends now, but not many close ones and still prefers to be at home entertaining himself.  His lagging social skills is why we enrolled him in Cub Scouts this year. 

He and his father have spent countless hours learning about trains and the railroad, an obsession that we assumed Mark passed down from his own childhood.  As a family we all got into trains and have enjoyed this hobby immensely.  As the years went on Alexander has had other intense interests.  He loves and has an encyclopedic knowledge of the Titanic.  This has led to an interest in ships and when he pretend plays it is usually about something real, like the sinking of Poseidon.  He talks incessantly about whatever his interests are (currently Minecraft and Godzilla), but who doesn’t talk about subjects that get their juices flowing? 

His vocabulary has pretty much always been advanced, which we attributed to his obvious brilliance and the fact that we never have used baby talk with our kids.  Although he had memorized Green Eggs and Ham by age 3.5 HERE, he struggled with reading comprehension and received extra help in kindergarten through first grade.  Writing has always been a struggle and I had inquired about dyslexia early on.  Instead of a diagnosis, he started occupational therapy for poor fine motor skills and a possible processing delay.  He is an artist and if he’s not on the computer or iPad you can often find him drawing about his current obsession, which we attributed to the many artists in the family. 

Just over a year ago he began an odd speech pattern where he breaks words up with a pause on the vowel.  For example he might say bo(pause)oat for boat or do-og for dog.  It comes and goes and sometimes is so strong that you can’t understand him.  We brought it to the attention of the school, who didn’t see it, until they did, so he started speech therapy.

A social skills program began in December and Alexander was invited to join.  He spent six lunch periods with other 2nd graders who were seen as lagging behind socially to play games.  The kids just thought it was something fun to do and he was upset when it was over.  He was getting upset more and more and it began to cause us great concern.  Homework that should take 20 minutes would last at least an hour and would include meltdowns of epic proportions every.single.day.  We know he’s smart so we got frustrated with him for not hunkering down and getting it done.

The odd speech pattern became more prevalent.  The meltdowns increased to nightly at bedtime, because bedtime means that when he wakes up he has to go to school.  He really does not want to go to school.  Waking him up leads to a daily meltdown as it means he has to go to school.  Breakfast leads to a meltdown and the need to remind him 60-70 times to eat.  He struggles with following through with simple directions such as; go upstairs, change your clothes (which we lay out or he would end up in a sweater with shorts or some other odd combination), remember to change your socks AND underwear this time, brush your teeth and come back down.  On most days he can remember 1 or two of those steps and we have to send him back up and often fix his miss buttoned or backwards shirts, unzipped flys, missing socks, or unbrushed teeth.  He always responds with a meltdown and says he forgot.  So we get frustrated at his stubbornness and inattention.

With the addition of ST to OT and perceived social skills deficits he received a 504 plan and a SRT or Student Resource Team.  I knew something more was going on, so I did some research, decided he had dysgraphia or ADHD and insisted on a team meeting.  Note:  don’t say dysgraphia to a team unless you want everyone to freak out.  Yet finally they decided to listen and investigate further.  This is how the school psychologist began an intensive series of evaluations.

continued HERE

Be the One

Please enjoy this wonderful video and share, share, share!

"Be The One" {Music Video} from Life Stage Films on Vimeo.

8th World Down Syndrome Day

This is Sophie’s first professional photo with her daddy holding her.  It was inspired by the cover photo of a book that was very important to me after our prenatal diagnosis of DS called, Gifts, Mother's Reflect on How Children with Down Syndrome Enrich Their Lives.

Why March 21st?  Down syndrome, also known as Trisomy 21, means that instead of having a pair, people with Down syndrome have 3 copies of the 21st chromosome.  That’s what makes 3/21 our special day.

This is a karyotype, or picture of Sophie’s chromosomes.  You can clearly see the trisomy of #21.

In honor of our daughter and all our bazillions of lovies with DS around the world, please enjoy this video created to celebrate this special day by the International Down syndrome Coalition.

While today is a day to celebrate our loved ones with Down syndrome, it is critical to point out that we have SO MUCH work to do in this world of ours.  Our loved ones with disabilities are far more likely to be abused in all forms and repeatedly throughout their lifetime.  Our culture still supports exclusion in our language making the Spread the Word to End the Word Campaign so important.  Our children are still being denied access to inclusive education with critical supports and services far too often.  More and more I am hearing of families still facing exclusion from the faith communities that should be at the forefront of acceptance.  Mothers receiving a prenatal diagnosis of DS are still given limited, outdated, and gloomy information and are often encouraged to terminate their pregnancy.  This has lead to a 90%+ abortion rate once mothers receive a prenatal diagnosis of DS.  Outside of the disability community, we face brick walls and locked doors in every direction.

It is a daily fight and it is exhausting and it is worth it.  I have to agree with Maureen Wallace in her article Down syndrome: Is awareness overdone and action overdue? when she, in righteous indignation, practically screams her demand for action.  As a community we have shown the power we have when we unite.  Although regular life is exhausting enough before adding advocacy into the mix, we need more people to pick up this mantle.  Whether people are natural leaders or not, our children teach us that we MUST be their voice.  We must take a stand and fight for their safety and dignity.  We must.  We must know our history and honor the warriors who came before us who fought for the rights our loved ones have today.  Please visit Visionary Voices, a project collecting information and stories of these warriors so that we cannot forget.

In that light and in honor of those who go to battle every day, enjoy the video below.  Oh, and happy World Down Syndrome Day!

For more who feel the same about the need for action, visit http://downsyndromeuprising.blogspot.com/

For Sophie

The wound that never fully heals, sighs as

I dared to lay down its protective armor hoping

for a moment’s breath without the weight of it

when Ignorance launched a stealth attack.

 

I am just One but I am fierce. And I am weary.

Stinging, raw pain threatens to bring me down and yet forward.

You gaze at me with beauty, resting in the safety of my arms

which are too weak to protect you always.

 

As your accidental warrior thrust into the fight

you trust me to be your voice. Failure is not an option.

I’ll never stop. My hands shake with rage or despair

at the indignity of the battle that cares not if I need rest.

 

I speak out but it is your strength that feeds me.

You deserve nothing less than everything.

When I falter, legions rise to carry us through the task.

I am One but we are countless in our numbers.

 

No darkness can survive your light.

Every cell of you is love that you give away to all

blessed to cross your path.  Drawn to you,

we are forever altered from touching Grace.

 

The truth of your lessons cannot be denied.

We’ll win them over Baby, for your message is timeless.

I am your accidental warrior and you are my tiny teacher

changing the world with your gentle, forgiving embrace.