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.

Turning Away From Hate (OneWord: MINDFUL #1)

Thanks to the principal at the school where I teach, I was introduced to "One Word That Will Change Your Life." After much consideration, I picked my word and spent many hours practicing it as I illustrated it:

In the few weeks since I drew the word, MINDFUL, I have reflected on it - meditated over it - daily. I allow myself to "rearrange" what I consider to be thinking errors on my behalf - to find my weaknesses and tear them down so that I may, with thoughtful purpose, renovate my paradigms.

Here is one:

I came across this quote on a friend's Facebook Page. I thought of all the times I've been hurt, the times I've seen people doing this to each other - either openly or surreptitiously. I thought about the  hard feelings I've clung to for years - for people I care nothing about - and how I feel when I speak poorly of them or even when they just drift into my mind. 

So I unwound those those bindings of ill will and allowed those feelings to scatter to the wind.

 It takes more character and strength to forgive...to let go...to just plain not make a person you don't like or who's done you wrong, a negative issue in your life. When you allow someone to make you angry, or when you harbor ill feelings for a person, you are giving that person control over you...you are making them matter MORE to you - when most likely you desire the opposite.

We are all human...and, individually, we are all doing the best we can. Unfortunately, we don't all fit together like pieces in a puzzle. Ours lives, ideas, values, and whatnot are full of fuzzy, ripped, and jagged edges that blend, overlap, and poke each other. What I mean is that we aren't all meant to be friends, we aren't all meant to get along, and sometimes blood is drawn (literally and figuratively) along the way.

All you can do is be the best and most loving version of yourself. Let your words and actions not cause hurt...even when you hurt...even when you are angry, sad, or afraid. Slinging bad thoughts, tossing hurtful words, and throwing jabby things only perpetuates and feeds those bad feelings - it doesn't rid you of them - it INCREASES them. You hold within yourself the immense power to stop it. To end it. That shows the greatest strength and character above anything else.

It took me a long time and a lot of hurt to embrace this. It was worth it, because the lesson is mine and is now a part of who I am becoming.

It's the Little Things...

Not really a big deal, but I have to share what happened when Emmett and I were checking out at Dahl's (Ingersoll) this morning:

Emmett was asking over and over and over for a quarter...I was trying to pay for our groceries, and was getting pretty distracted by him (he kept wanting to reach over to grab something off the cashier's register because he thought it was gum). I was trying to remain calm because between him asking for a quarter, asking what's for dinner, and getting grabby...I realized I had no quarter (I'd emptied out all the change in my purse on Friday). So then I started telling Emmett I'd bring him back later (when I pick Elijah up from work) and he could have a quarter then...and he kept asking - but he wasn't upset or anything.

Then the young man bagging our groceries reached into his own pocket and gave Emmett a quarter. He was so kind and sweet about it. Emmett, smiling, bounded over to the gumball machine to get his treat, and I thanked the young man from the heart...as much as I could before getting all emotional.

It's little gestures like this that give me hope - that as people become more aware about autism and see others like him in the community, kindness and understanding will become the norm. Emmett's quite the spectacle at times: towering over me by almost a foot, dressed like Inez from Cyberchase, a little bit of jumping and hand flapping...he's one special dude...

...and so is that young man at the grocery store.

Like I said - not a big deal. But it kinda is.

UPDATE: I called the store this afternoon to get the young man's name...Matthew. Dahl's will be receiving a letter from me. 

Emmett, dressed as Inez from the PBS show, Cyberchase.
He wears this outfit practically EVERY DAY (not sure what
we'll do when winter comes!)

Please Stare: Positive Autism Awareness in the Community

Earlier today a picture of a father/daughter popped up on my Instagram feed. It was posted by Autism Speaks an organization that has a high visibility in the Autism community.. In the photo, a father is standing next to his daughter and he is wearing a red shirt that says, "Keep Staring It Might Cure My Child's Autism Then We Can Work On Your Social Skills"

I paused, re-read the t-shirt several times to make sure I was reading it correctly. I tensed up in frustration...I WANTED TO SCREAM (not only because of its lack of punctuation...but that's definitely annoying)

Seriously? I mean, REALLY? Is this what Autism Awareness is nowadays? Offending and alienating bystanders who may be curious about your child and/or not understand what they are seeing? To immediately present a rude and sarcastic (not even remotely funny or educational) statement on a t-shirt...I am stunned. 

Maybe it's because I am so used to my son getting stared at, and I am beyond caring anymore. How other people look at my son is inconsequential. I don't wear my son's autism like a wound for which I feel other people should apologize. Humans are naturally curious and it doesn't take a typical bystander more than a few seconds to catch on and realize that my son Emmett is operating on a totally different level than everyone else...and if they find that entertaining, I hope they enjoy the free show...but I am NOT going to chastise, belittle, or say something rude (or let my t-shirt say it for me) in response to them looking...

...because how would that be raising "Autism Awareness" in a POSITIVE and WELCOMING way? 

Yes, I know my son is 6'5" and flapping his hands like he might take flight any second...have a look - he's happy. PLEASE LOOK AT HIM. Yes, that's my son, carrying an arm full of stuffed animals through the grocery store...they are his best friends. PLEASE LOOK AT HIM. Yes, that's my son, loudly reciting hundreds of animal names in alphabetical order while our families are all waiting for the waitress to bring us our food...he's hungry. PLEASE LOOK AT HIM. Yes, that's my son, big and tall and all 260 pounds of him throwing himself on the ground having a meltdown because he is so frustrated about something and he doesn't have the functional language skills to express himself using words...PLEASE LOOK AT HIM.

Look at him. PLEASE. Please - I won't think you are rude - stare all you want...and LEARN something: he's different, beautifully different...different in infinite ways that even I - the woman who gave birth to him and knows him better than anyone else - can even possibly grasp. I understand why you want to look, and I don't care - because when you look at him you are learning something: you are observing that this human is having a good/bad/happy/angry moment. You are seeing me (or any member of my family) interact with him in a patient, loving way. You are becoming AWARE that children like this exist in our community...maybe you already know one...maybe one day you will. 

So, please, stare at my son all you want. 

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…

Emmett's Buttons: An Autism Journey - Part 1

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 was a great baby. I’d had a healthy pregnancy and a normal, all-natural childbirth with midwives. My husband, Scot, and I already had two healthy identical twin boys who were born 19 months before. Emmett was a cuddly and sweet child who’d hold my hand as he nursed, occasionally pulling his head back from my breast, milk dripping down his cheek, just to look me in the eyes and grin at me. He rolled over on time, he sat up on time, he crawled and walked on time…but as he grew we suspected that something just wasn’t right.

At first, my husband and I thought it was his hearing. Emmett had frequent ear infections as a baby. We would bring him in for a checkup, and his pediatrician would tell us he had an ear infection; most of the time he had no symptoms of an ear infection whatsoever.  One time we rushed him to the ER with blood running out of his ear: his eardrum had burst due to an infection.  We were referred to en ENT, who wanted to put tubes in Emmett’s ears.  A friend suggested taking Emmett to a chiropractor instead, just to see if it would make a difference. It made a HUGE difference – Emmett’s ear infections ceased almost immediately. Emmett was about 20 months old at this point.

But Emmett still wasn’t responding to his name. I would stand behind him as he sat in front of the television watching “Sesame Street” and I’d say his name, and he wouldn’t turn around. He also wasn’t trying to say words. He just didn’t seem interested in communicating with us or with other children. So we took him in to have his hearing tested.  The test came back normal. The ear infections hadn’t damaged his hearing. I was relieved…until they referred us to the psychologist.

Up until this point I was banking on having a hearing impaired child. I figured I could handle something like that, no problem. I’d just learn sign language and we’d navigate the world from there. 

But when are things ever that simple?

So when he was 25 months old we took Emmett in to see a psychologist. Over the course of several weeks she asked us questions about his health and development, took our family history, and had us fill out questionnaires.  She observed Emmett, interacted with him, watched us interact with him…it didn’t take long for her to come to us with a diagnosis. On a sunny afternoon in early June Scot and I heard the words that would change our lives forever:

“Emmett is autistic.”

The words hit me like a ton of bricks. By then, I’d had a suspicion. But hearing it confirmed by a professional only intensified the immense grief I felt at that moment.  All I could think about was my son and his uncertain future.  I felt guilt: what had I done wrong? How is this going to affect the family? How will my marriage survive? What will happen? What do I do next? Can I cure him? What do we do with him? 

We love him. We teach him. He loves us. He teaches us.

This was 14 years ago.

NEXT: Where do we go from here?

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.