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.

A Day to Remember...Our Love for Jer Bear

Four years ago today, the world changed drastically. Most of you may not have noticed that change, but for those of us who were blessed with the friendship of Jeremy “JerBear” Spencer, the change was devastating.

One less beaming smile.

One less endearing laugh.

One less comforting hug.

Jeremy was gone...just like that. Gone.

Did I really get a chance to say goodbye?....

Thursday, February 8th, 2007 6:30am....

     I picked up Jeremy at his and Jennifer’s (his mom) house. I was taking him to work with me at Woodward Academy, where I was teaching adjudicated teen boys. He was looking for a job, and we had spoken a few times about how he was interested in finding a career, maybe going to college. He wanted to work with troubled kids, to help them in some way, and so he was going to apply for a job at the Academy, and interview that day. 

     His interview went well, and I took him to lunch…a nice, long lunch. It was wonderful – I hadn’t seen a lot of him lately, I was busy with the kids and work, Scot was on the road with Tommy Castro, and Jeremy had just had back surgery in December. So we took advantage of the time that day to get caught up on what was going on in our lives.

     He was in a lot of pain, I could tell, and he shared with me his medication troubles and frustrations - but he was optimistic that his pain would soon be under control. (I’m not going to give a detailed account of our conversation, because it’s lengthy, but he did have plenty of reasons to be upset with his doctors).....

We got back to my house in Des Moines around 3:30pm…and he came in to say hello to the boys and Scot.

     Escher had an outing for TigerCub Scouts to the Channel 8 studio, and Jeremy - sometimes like a little kid himself – excitedly invited himself along....he got a kick out of things like that. At one point he handed me his cell phone and had me take a picture of him posing with one of the on-air personalities...to this day, Jennifer has that picture on her phone - it was Jeremy's last picture.  He's wearing the biggest grin.

     Afterward, I dropped him off at home - big hugs - I didn’t want to squeeze him too hard, with his back and all. Before I even got back to my house, he had called me on my cell phone, thanking me for a great day, for lunch, for the pack of cigarettes, for getting him the job interview. I told him to let me know when he heard back about the job. Goodbye. Click....

...and that's the last time we spoke.

Saturday, February 10 th , 2007 mid-morning....

     I was shuffling around the house, a bit tired from celebrating my brother’s birthday the night before, and the phone rings. I didn’t recognize the number on my caller ID, so I let the answering machine get it. I hear: “Jenipher, this is Vicky, Jennifer’s sister....I need to get a hold of you....Jeremy is dead. He’s dead....I have Jennifer over at my house – she wanted me to call you.”

No, no, no, no, no, no……NO. NO. NO.

     Within the hour I am at Jennifer’s side….struck with the hope that this is all a dream....this is NOT happening....this is CRAZY…what the HELL is going on? NOT Jeremy...not JerBear...no, no, no, no...all I wanted to do was to hold Jennifer and cry...why Jeremy? Why?

     The next several days were spent making phone calls, crying, making arrangements, crying, picking out flowers, crying, picking out a casket, crying, going through pictures, crying, planning the service, crying, trying to console Jennifer, crying – there was so much to do....I took the week off from work – Jennifer has always been a fiercely independent woman – but she needed us. I left Jennifer just to go home and sleep....but even that was hard to do.

The only thing harder? ....

Not knowing how to move forward in a world without Jeremy.....

     Jennifer and Jeremy…Gooch and JerBear....more than just mother and son....they were two peas in a pod – rarely did you see them separately....they were a package deal. Jennifer was a single mom, she raised Jeremy on her own – and she did a great job. Anyone who knew the two of them could tell you that their love for each other was amazing. Jeremy was genuine, kind, funny, and well-balanced...I mean, even when he was mad he was a good guy. I’m not just saying that, either...Jeremy was a gentleman, in the truest, most pure sense of the word.

     Jeremy loved music, with all his soul. He couldn't play an instrument....but his love for music was reflected in his wardrobe choices...usually a band t-thirt....and the fact that most of his friends were musicians. He enjoyed going to concerts and live music venues...whether it was a late night jam in a danky bar or a mammoth concert in a huge stadium. He surrounded himself with what he loved. 

     Only slightly overshadowed by his love of music, was his love of kids. When Scot and I had children, we chose four godparents...Jennifer and Jeremy were two of them. Jeremy was great with kids - in a way he was like a big kid himself. He’d get right down on the ground and play with them, join in their games, roll around, wrestle. He would have made an awesome father...guys like him are rare. Look at the pictures I’ve posted below, you’ll see what I mean.

     So, I could go on and on and on about what a fantastic guy Jeremy was...but if you knew him, then you don’t need me to tell you...and if you didn’t know him, well, your loss. But four years ago today, my best friend Jennifer lost her only son....this is for her.

     Although it's been four years, Jennifer is still in the process of grieving.  A couple of years ago, Jennifer and I went to go run some errands on the evening before the anniversary of Jeremy's death.   At one point between destinations she quickly glanced at herself in her rearview mirror and said “I keep looking for a spark (in my eyes), sometimes I can see one there.” I sometimes see it there, too...and I want to see it there more often...but I can totally understand why she still has her good days and her bad days. No mother should have to bury her son...it’s beyond sad.

     So, for the past four years, we have celebrated Jeremy’s birthday at his grave....lit fireworks, released balloons...stopped by to just say hello to him or to talk...he was always a good listener. Jennifer keeps his grave decorated according to the seasons....he’d get a kick out of that.  There are days when I swear he's riding in my car with me...a song he loved comes on the radio - and I can feel him riding shotgun, checking in on me.  I tell him his mom is okay...I tell him that we all miss him so much it hurts.

     Jennifer carries Jeremy on her shoulder – literally. Three years ago she got what has to be the most amazing tattoo of Jeremy...I can’t remember who did it (I’ll ask her and edit it in)....but it is spot on JerBear...beautiful smile and all...here it is:

I love to see Jennifer laugh:

     We all loved Jeremy....one would be hard-pressed to find someone who didn’t. His was a rare soul...one you would be lucky to know once in a lifetime....and he left us behind way too soon....standing and shaking our heads while our hearts shattered.

He was only 32.

One more star in the sky.

Jeremy "JerBear" Spencer

October 5, 1974 - February 10, 2007

JerBear...we know you are out there...we still feel you in our presence sometimes - but we always feel you in our hearts. Continue to show your mom your love and your signs...they give her strength and hope that someday you two will be together again...and that you are at peace. Please watch over us all. 

MY MAYFLOWER STORY

 

HAPPY THANKSGIVING!

Thanksgiving is definitely my favorite holiday of the year.  I love fall and all it brings - even the promise of winter.  Most of all I enjoy how it brings family and friends together to share in traditions and giving thanks, which we don't often enough take time to do throughout the rest of the year.  It's a time to slow down before the rush of the holidays, and reflect upon how truly blessed we all are to have each other.

My family are proud descendants of brave pilgrims who chose to come to America on the Mayflower.  These pilgrims are why we all give thanks - they struggled so that we could give thanks today.  With credit to our relative, the Hon. Harold Van Voorhis, I'd like to share our genealogical line to one young Mayflower passenger:

In 1620, Edward Fuller (13 G’s grandfather) and his wife Ann came to America on the Mayflower, with their son Samuel Fuller (12 G’s grandfather), who was 8 years old. Edward and Ann died the first winter. Their son Samuel was raised by his uncle, Dr. Samuel Fuller, the Pilgrim’s doctor.

Samuel grew up, married, and had a son named John Fuller (11 G’s grandfather), born in 1650,

John grew up, married, and had a daughter named Thankful Fuller (10 G’s grandmother), born in 1679,

Thankful grew up, married, and had a son named John Crippen (9 G’s grandfather), born in 1701,

John grew up, married, and had a son named John Crippen (8 G’s grandfather), born in 1730,

John grew up, married, and had a son named Ichabod Crippen (7 G’s grandfather), born in 1750,

Ichabod grew up, married, and had a son named David Crippen (6 G’s grandfather), 

born January 18, 1786,

David grew up, married, and had a daughter named Harriet Crippen (5 G’s grandmother),

born January 10, 1820,

Harriet grew up, married, and had a daughter named Tirzah Fuller (4 G’s grandfather),

born in March 14, 1849,

Tirzah grew up, married, and had a son named Ford Van Voorhis

(3 G's  grandfather), born September 4,1872,

Ford grew up, married, and had a daughter named Lena Van Voorhis,

(great-great grandmother), born May 8, 1896

  

 Lena grew up, married, and had a son named Harley Van Seibert (great-grandfather). born August 11, 1917

 Harley grew up, had a daughter named Teresa Ann Seibert,  (grandmother) born November 8, 1948

Teresa grew up, had a daughter named Jenipher Lynn Wilkinson (mother), born October 1, 1970

Jenipher grew up, had four sons, Ethan, Elijah (twins born September 14, 1995), Emmett (born April 12, 1997), and Escher (born June 27, 2000) Sutherland

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The 15 “greats” grandfather of these boys, on the Van Voorhis side of the family, was Reverend John Robinson (Born 1562, died 1625) He was the pastor of the Pilgrims, who encouraged them to come to America. He was too ill to come on the Mayflower himself, but his son came to America in 1630.

************************************************

Another one of our Mayflower ancestors was a man named Stephen Hopkins. BEFORE he came on the Mayflower, he had already been to America EARLIER!  Stephen was part of the team that was sent from England, to rescue the Jamestown settlers, in 1610!

That crew was shipwrecked in Bermuda, scrapped together another boat from leftovers and new wood they cut down on the island, and finally arrived at Jamestown on May 25th, 1610.  This spring, we held a huge celebration commemorating the 400^th anniversary of our family’s arrival on American soil!

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 So, whether your family has been here for 4 months or 400 years, HAPPY THANKSGIVING!