April 2, 2015

The Bright Side of Autism




Did you know that there's a bright side to having a family member with autism?
Well, there is.
A big one, actually.

Most of the stories we read online and in the news, are about the hard parts. There's a reason for that. Sometimes the struggles of parenting a child with autism teach us difficult lessons, and sharing those lessons with others can help us to find meaning in our trials. Sometimes we just need to get it off our chest. And sometimes, we're trying to help you - the person on the outside - understand us, the people in the trenches. Because, if you understand, you can help your own children understand, and bit-by-bit, the world gets easier for my son to navigate.

Education leads to some incredible things. Invitations to birthday parties. Inclusion in the games on the playground. Compassionate hugs instead of dirty looks. Helping hands instead of empty words. It leads to advocacy. It leads to treatment. It leads to answers.

And we need answers.
1 in 68 children born this year will have autism.
3.5 million people in the United States have autism, and that number is growing.
That's a lot of people.
That's a lot of parents of people.
That's a lot of people caring for people.
That means, it's very likely, that every person will eventually be effected by autism in one way or another. Including you.

That's why April is autism awareness month. That's why today, my family is lighting it up blue - to show our support for our children, family members, friends, and neighbors who have autism.

This post though, is not about the hard parts. Those posts are for another time. This post is for me to celebrate my incredible, unique, brilliant son, Clyde - who happens to have autism. This post is for the good parts - the bright parts - and this is what they look like.





Family and Friends

Harker Family 2014
Grandpa and Grandma McNair's with Cousins
























Terrific Teachers
Clyde and Miss Gwen
Mrs. K. (Michelle Keitzke) and Clyde


Miss Jelly & Class on "Clyde" Day
Mrs. McCann and Clyde





Fantastic Fun!

Bouncy Fun

Rock Wall at IFG

Mt. Rushmore
Swimming with Henry



Mattress Surfing
Sledding in Idaho
So. Many. Letters.

The Real Life Chicka Chicka Boom Boom Tree


4 Years Old

The Perfect Alphabet
Alphabet Puzzle

Letter Calisthenics (X & N)

Even. More. Dominoes.
The Great Domino Tower






A Different Way to See the World

Apples at Grandpa and Grandma Harkers

Can Tower - age three
Dentists office - 2015
A Few of Clyde's Favorite Things - Rice, Snuggly Blanket, Dominoes, Reading

Guard the Toilet Tough Guys
Phew - Perfectly Organized


Only Clyde Can Dwell Within

The Bright Side, My Son Clyde

First Day of School
Leaves
Our Friend Julian - the Gentle Santa, and Clyde

Working Hard
Easter 2013
Fries - The Favorite
Sensory Tub Time!

Steve or Clyde?
Toughies
Clyde is one-of-a-kind. There's no one else on earth quite like him. He has autism, and that means he sees world in a different way. He thinks differently too - and those differences should be celebrated. Clyde's mind is constantly expanding in new and incredible directions. He views things through a different lens, so he's able to see things in a we can't. I rejoice in his strengths and his small triumphs because they are so hard won. He is courageous in ways I am only now just beginning to understand. He is an incredible person. There are some hard parts to autism, but alongside the hard parts, there's an incredible cord of brilliance and spirit the runs parallel to the struggle. I see that light in him every single day. 

That's the bright side of autism.
I wouldn't trade it for anything.

February 23, 2015

When you Baptize your Son With Autism...

In my church, The Church of Jesus Christ of Latter-Day Saints, children born to member families are not baptized until they reach the age of accountability, which is eight-years-old. Baptism is a very special and sacred time. Usually, the child preparing for baptism first meets with the Bishop of the Ward/Congregation, and then spends some time at home and in primary, learning about the covenants of baptism. On the day of the baptism, there is usually a lovely program full of music, singing, and talks about baptism and the gift of the Holy Ghost.

Then, family, ward members, and friends, gather around the baptismal font, where a prayer is said by a Priesthood holder, and the child is gently immersed in the baptismal waters. Once everyone is dry, the child receives the Gift of the Holy Ghost by the laying-on-of-hands from Priesthood members who are friends, family, and members of the Ward. It's a wonderful day for the whole family. It's a day of joy, a day to remember. I've never made it through a baptism without being moved to tears from the Spirit.

But...when you baptize your son with autism... It goes a little more like this.

You start preparing six months in advance to get him used to the idea.
You talk about baptism in the most cheerful tone you can muster, bringing it up in random times and places - the bathroom, bedtime, the drive home from school - any time he's calm and content.
You pretend not to notice when he plugs his ears at the very mention of the 'B' word.
You start putting up pictures of children being baptized in random places in your house.
You pretend not to notice when the pictures miraculously disappear and you find them tucked away under beds and stuffed in corners.
You pray every night during family prayers that he'll have the desire and strength to get baptized.
You pretend not to hear when your son tells you that he is NOT getting baptized no matter what you say.
You take him swimming at the rec center every weekend to practice putting his head underwater with Dad.
You change the subject when he says he won't get baptized unless he can wear goggles.
You hold your breath the first time he says, "Maybe I'll get baptized."
You cry in the bathroom at church when he notices a picture of Jesus's baptism and says, "Hey Mom, look, Jesus got baptized."
You cry some more when you overhear your nine-year-old son encouraging him, "I got baptized last year. It was awesome. It wasn't scary at all."
You grit your teeth through the most agonizing Bishop's interview there ever was - where your son tries to run away, kick the Bishop, says that he "hates Jesus's mustache", and finishes off by telling the Bishop to "Never come back!" (door slam) Poor Bishop.
You try not to be embarrassed.
You hate yourself a little when you realize, that after all this time, after all you've learned, you still sometimes wish things were different.
You wonder if he's not ready.
You pray and pray and pray and pray and pray....
You pray that he'll understand, that he'll feel the Spirit and know he's doing what's right. You pray that he'll have a real desire, for himself. You pray that his anxiety will go away. Just for a day. Just for a moment.
You wrack your brain for a way to introduce baptismal covenants in a way he'll be able to understand.
You apologetically un-invite everyone but family, to the baptism, so he won't get overwhelmed.
You turn down all offers from your Ward family to play the piano, to sing, to make treats, to show their love and support. You say things like, "Sometimes music stresses him out." and, "The only treats he likes right now are 'pretzels' and 'Fritos'."
You tell your brothers that they can't stand in when he's blessed because he might not like the feel of too many hands on his head.
You try to prepare your family, who traveled from Florida and Idaho, that it might not happen...that he might scream bloody murder in the church, that he might have to get baptized in his swimming suit, (Can we even do that? Phone call - again, poor Bishop) that he might try and make a run for it...that we might have to try again next week, or next month, or next year.
Flier

The day comes....
You pray for a miracle.
That's what you do when you baptize your son with autism.

And then - The miracle rises with the sun.

He wakes up. Calm, and happy. He puts on his church clothes. He's anxious in the car, but the moment he sees his family, all waiting in the parking lot, he bursts into the biggest smile you've ever seen. He hugs every single person. He turns to you and says, "They ALL came, Mom."


Clyde's "people".
He runs, excited, into the church. He peeks into the font, a little nervous, but not afraid. He puts on the white suit, surprisingly proud to 'match' with Dad.


Clyde, Scott, and Henry

We sing one verse
of his favorite hymn, "Praise to the Man" and he doesn't cover his ears. He listens to a short talk from Mom, and actually understands what's happening.

He's only a little apprehensive about getting the white suit wet, but after a toe dips in, he enters the waters of baptism with confidence.


He's baptized.

He enters the room again with shiny wet hair, and my family can't help but clap a little - even though we're in the church - when we see him, smiling, proud, and filled with the Spirit. My sweet boy. He laughs. He hugs me. He tells the whole room that he's freezing his nipples off - because it wouldn't be Clyde if he didn't say exactly what was in his head.

He sits, only wiggling a little bit, while he receives the Gift of the Holy Ghost. His Dad blesses him. His Grandpa Dan stands in. It's simple, but powerful. I get the sudden, overwhelming feeling that there are others standing in too. People who love him. People who love us. People we can feel but not see.

He smiles. Grandma Sue cries when she says the closing prayer. He wants to go, but only because he wants to sit in the car and read all the little notes of love and encouragement his family left for him.




 
 
 

 
You drive home.
You go swimming at the hotel with Grandma and Grandpa.
You eat pizza.
You say a prayer of gratitude for your supportive, loving, understanding family.
You watch your son play with his cousins.
You realize he's so much stronger than you realized.
You hug him and tell him how proud you are.
You feel proud of yourself too, when you realize, that after all this time, after all you've learned, that you never gave up, trying to do what was right.
You learn that the light of Christ ascends above any weakness, and any disability.
You feel blessed beyond measure to be a mother, and not just any mother. His mother.
You help him put on his Mario pajamas.
You tack the notes his family wrote him up on the wall by his bed because he wants to see them before he goes to sleep.
You cry when you tuck him in and he tells you that he had a really good day.
You think.
You ponder.
You wonder why you ever doubted.
You vow to live a life with more faith and less fear.

"Baptism... takes us out of this world, and into the Kingdom of God," Robert D. Hales.

When you baptize your son with autism, you feel the Savior's love in ways you never realized you could. You realize that even though the experience may have different for a child with a disability, it wasn't less. It could never be less. The same Spirit testifies. The same covenants are made. The same holiness prevails.

"The greatest example who ever walked the earth is our Savior Jesus Christ." - Richard G. Scott

He was baptized to show us the way.
When you baptize your son with autism, it's no different than any other baptism. It's the same step on the pathway back to the Savior. The pathway home.

 

 


December 25, 2014

A Snuggly Christmas Miracle

It has been ages since I posted on my blog. So long in fact, that I nearly forgot I had one. I felt though, that this little Christmas miracle of ours needed some space to give it the justice it deserves.

2014 has been a challenging year for my little family. We moved. Twice. We adjusted our lives and then adjusted again. We've gone through a lot of changes in a short period of time. We had a tragic and unexpected death in our family. There have been many difficult trials for our loved ones, and for us.

Parenting, during times of change, is especially challenging for us. My son Clyde, who has autism, struggles with change. Even minor change, like our brand of turkey bacon, can give him stress and anxiety. He notices emotional upheaval, and he can sense tension and stress. His reaction to change is to become very rigid and inflexible. Sameness and uniformity become synonymous with comfort and peace.

That's why, when Clyde's precious "snuggly" blanket, got a long tear in it, it was a BIG deal. He cried about it for a long time. Over the years, my friends and I have patched, sewn, and tied together the tattered pieces of Clyde's "snuggly" blanket too many times to count. Every time I put in a repair stitch, I said a prayer that I could salvage it for another year, or even another month. You can imagine my distress when I realized that the blanket tear could not be mended.

Clyde came up with the perfect solution. I almost didn't catch it. At school, he wrote a wish list for Santa. The only item on the list was, "a new snuggly blanket with monkeys on moons". I found the list in a crumpled ball at the bottom of his back pack. Of course, I had to try. I had to. It's every Mom's job to do their best to make their kids Christmas dreams come true, right?

I searched everywhere for the fabric. I think I went to every fabric store in Grand Junction. I searched online. I called all the sewing enthusiasts and crafty people I knew. Everyone in my family was looking for the fabric, but nothing came up. The fabric was ten years old. It was out of print. It was impossible to find. I felt so discouraged. So, I did the only thing left to do when you get really really stuck. I knelt and said a prayer. I asked Heavenly Father to help me.

Maybe, to some, monkey fabric seems like a silly thing to pray for, but it didn't seem silly to me. Clyde needed that fabric for his sanity. He's had the "snuggly" blanket since he was born. We've tried a dozen other replacement blankets, but for some reason, that's the one that stuck. Then, the idea came to me to turn it over to my friends- all of the amazing, incredible people I've gotten to know over the years. I put up a facebook post of the fabric online, and for the first time, I made a personal post, (gulp) public.

The very faded fabric of the "Snuggly".
I couldn't believe the response I got. The first day I posted, I got 41 messages in my inbox with questions about the fabric. Soon, someone found a picture of the original fabric, but it was out of stock! (Thanks Kandice!)

The original fabric. 
The next day I had 111 messages in my inbox. 54 "close but not quite" alternatives were suggest to me by total strangers. Several people who were a friend of a friend of a friend, scoured the internet on my son's behalf. 748 people shared my post. I even got a phone call from a television show that was interested in helping me look for the fabric - someone, anonymously wrote them an email about Clyde's blanket. (Thank-you anonymous stranger!)

And then...

Success. A stranger named Louise Young (thank you Louise, whoever you are!), shared my post on a quilting site, and Kristy Monk, owner of Monk's Corner in West Virginia, found the fabric in her stash. The fabric was in hand the next week, exactly the same as the original. When I unfolded it, I burst into tears. It was inch by inch the exact size of Clyde's original "snuggly" blanket. I couldn't believe it!

My sister-in-law Kate and I finished sewing the night of December 23rd. Quite a feat for me since I haven't tried to sew anything in a decade....but, we made it in time for Christmas! Here are the results in video -!



As you can see, we have one very happy little boy.

Thank you so much. I can't say it enough. Thanks to everyone who shared my post, who looked online, who looked through their fabric stashes, who called a quilter or a seamstress in their family for advice, or even those who just said a prayer for us. Thank you from the bottom of my heart. I really don't have words to express how uplifting this experience was for me, or how special. I needed it so much. My whole family needed it. We felt the love of our Savior through you. Thank you, thank you, thank you!

Merry Christmas! Thanks for helping our Snuggly Christmas miracle come true!