This time of THIS year.

I'll just come right out and say it: I have felt a bit "off" lately. I love this time of year, the end of May. The flowers are blooming, the days are getting longer, the weather is getting warmer, and SCHOOL IS ALMOST OVER. Whoo hoo! As a teacher, these last few weeks of school are a futile exercise in herding cats - and I love every minute of it. However, I haven't felt the energetic buzzing of the end-of-the-year joy I usually feel. It's been mysterious in its elusiveness.

Elijah & Ethan, Class of 2014

The end of May is typically a time of endings and new beginnings. Seniors are graduating and moving on to college or other exciting endeavors. My mom and step-dad, both teachers, are retiring this year, venturing on to the next stage of their lives together. This time last year our twins, Ethan and Elijah, were graduating from high school...


 ...and then, like a ton of bricks, it hit me: Emmett should have graduated this year.

Emmett, had he been neurotypical and not autistic, would be graduating and moving on with his life. He'd be a proud graduate of the Class of 2015. This is one of those ultra-rare moments when I allow myself to grieve a little bit; when I permit myself to wallow in the "what ifs" and indulge in the "if onlys." It is a time when I wonder how different our family would have been if Emmett had been "normal" - I picture him driving a car that he bought himself from money he earned while working. I picture him laughing and hanging out with his friends, going to movies and parties. I picture him with a girlfriend who is caring and beautiful. I picture him walking across the stage, receiving his high school diploma. I picture him a thousand ways that he will never be, a thousand things he can never do, a thousand things he will never have...

Emmett in front of his school, the Grandwood Education Center

 

Then I snap out of it.

 


Emmett doesn't know what he is missing.



He's a pretty happy dude.





 So instead of planning a graduation party for Emmett, we are planning what comes next in his life. Yes, he will graduate - three years from now, in 2018, when he is 21 years old. Instead of going to college, Emmett is going to court, so Scot and I can become his legal guardians and continue to make decisions for him. Some day, maybe after he has graduated, he can live in a special home with staff who care about him - so he can learn not to depend on Mom and Dad all the time.

Emmett and his dad, Scot, at State Special Olympics.

One thing is for sure: Emmett will have his own adventures and achievements. This isn't about what our family is missing - having a son as special as Emmett . This is about Emmett having a life that isn't directed or determined by normal, neurotypical rites of passage and age-appropriate accomplishments. 

It is about him having his own life - but with help. 

And when he does graduate in 2018 (along with his younger brother), we will be having one SUPER graduation party.

Emmett's Buttons: An Autism Journey - Part 2

Suspecting that something may be developmentally “off” with your child is scary enough, but hearing the words “Your child has autism” can be devastating…

Emmett will be turning 16 on April 12^th. This month I plan on writing about some of the details of our journey with Emmett. Some of it might be in chronological order, some of it might be about some of the special gifts he has. But all of it will be about how blessed we all are to have Emmett in our lives.

 

“Emmett is autistic.”

At this point I was drowning in a deep well of grief and self-pity.  My vision of a “perfect” family was shattered.  I felt so selfish thinking this way…up until Emmett’s diagnosis things had been going so well for us: I was back at school earning my BA in Art Education at Drake University, Scot was a full-time dad and a working musician.  I had a plan for our family, and it didn’t include a complication like this.

Our family was wonderful.  Our friends were supportive.  Not everyone understood what autism was – it was mid-1999 and people were just becoming more aware. The statistics from Autism Speaks at that time were from 1995, stating that 1 in 500 children would be affected by autism (which was changed to 1 in 250 by 2001)…unless a person was directly affected by knowing or having a child with autism, the easiest explanation we could ever give someone was, “Have you ever seen the movie Rain Man?”

…and Emmett is quite a bit like Raymond Babbitt on some days – but that’s another blog.

 I loved my son - so much I ached - but I kept thinking, “How the hell are we going to manage this?” Inside, I was completely falling apart, while outwardly I took action: setting up early childhood education intervention, calling for therapy services, scouring the Internet for information, taking him to see more doctors, reading books:  my motherhood instinct kicked into gear and I found my groove. 

Scot would take Emmett to an adaptive play group, where he could play – but Emmett didn’t play with other kids. He parallel played…played in the same room, but did his own thing. He lined things up, he flapped his hands, he laughed, he smiled, he threw tantrums. Emmett still didn’t talk, but we noticed something extraordinary: he knew the alphabet.

Not only did he know the alphabet, but he knew how to spell and we figured out that he also knew how to read. He was two years old - not even two and a half, we hadn't taught him how to read! What was going on? As luck would have it we were scheduled to take Emmett to the University of Iowa Hospital and Clinics in Iowa City to see Dr. Wacker at the Center for Disabilities and Development.  There, we expected to get a few more answers about Emmett and hopefully a few ideas of things we could do to help him. 

In Iowa City, Emmett was evaluated and observed, and we answered a ton of questions about him. In the end we received an array of puzzling diagnoses: PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Semantic - Pragmatic Disorder, and Hyperlexia. The PDD-NOS and the S-PD explained the autism, and the Hyperlexia explained his obsession with the alphabet, his ability to read/spell (though he still wasn’t speaking).  I began to realize that although Emmett had this great disability…he also had a great superpower. 

Could we tap into it?

(read more about Hyperlexia here: http://www.articlesbase.com/health-articles/understanding-hyperlexia-407915.html)

NEXT: Our first steps inside his beautiful mind…

My Reality, My Truth

I teach.

One of the questions we discuss with students is if there is a difference between reality and truth.

Is there a difference?

We usually conclude there is: the difference between "reality" and "truth" is that truth is subjective - formed by our paradigm and how we perceive things.  Truth can be altered. Truth differs from person to person. Truth is based on our beliefs and our experiences.

Reality is what can't be changed.  I can't change reality for myself or anyone any more than I can change the color of the Pope's eyes.  Reality is what can blindside you after the veil of truth has been ripped to shreds.

I was just trying to think about how Emmett fits in to this way of thinking - for me, as his mother.  I didn't ask for him to be autistic, can't change the fact that he is, can't "get rid" of him - he is mine for life...  So I choose to be happy every day I can - but that, again - in theory - is my truth.  Most people couldn't handle my truth, much less my reality.  I'm not saying I am a better person because I have a son with a significant disability, it's just that my truth and my reality are complicated things and that some days I am not even sure that I can handle either one of them.

My dad once told me to only worry about things that you can control...in other words, don't spend your time worrying about things that you can't do anything about...focus on what you CAN do. Most days that is easier said than done, especially when every single moment of every single day seems to be the product and folly of Fate:

...can't stop Emmett from screeching loudly in the grocery store
...can't stop Emmett from crashing onto the floor at WalMart
...can't stop Emmett from hitting or smacking me or his brothers when he is upset
...can't stop Emmett from breaking windows or putting holes in his walls when he has a meltdown
...can't stop Emmett from picking his nose and eating his boogers in the middle of a restaurant 
...can't stop Emmett from constant persevering about any random subject for hours and hours
...can't stop him from throwing his arms around me for a big bear hug when he knows I am sad
...can't stop him from caressing my cheek and saying "You are so sweet."
...can't stop him from asking for snuggles and tickles
...can't stop him from laughing hysterically at nothing at all
...can't stop him from singing random songs from Sesame Street
...can't stop him from creating witty and amazing drawings

With Emmett I can't stop being fascinated and frustrated; overjoyed and overwhelmed; exhilarated and exhausted - running whole gamut of human feelings and emotions on any given day.

...and all I can do sometimes is just breathe. In and out, in and out, in and out....waiting for some moments to pass and for some to last just a little bit longer.  It is similar to what I feel with my other children...but infinitely amplified. I know our other three sons will grow up to be fine independent men with their own lives and their own families...but Emmett will always be dependent - with the language, verbal reasoning, and social functioning of a 4 or 5 year old.

That's my truth and my reality.


...and I wouldn't change it if I could.