Stories of Autism

Our story is a sadly familiar one. Carolina was a beautiful, bright-eyed, typically developing baby until somewhere after her first birthday. The changes were quite subtle, gradual, but not to be denied by the time she was two and a half. Her diagnosis was not surprising, but it was devastating, because I’d worked in this field and know it could be a cruel fate.

In the last seven years, we have tried many things, yet Carrie remains significantly affected by autism. While we never give up hope, we have come to accept that our lives are forever changed. Nothing conventional or boring here! A child who cannot talk or understand much of what is said to her, is not toilet trained, sleeps poorly, has stubborn compulsive behaviors and frequent emotional upsets, no awareness of safety and needs now – and will always need – constant supervision. Day-to-day life is unpredictable, a big, bold roller coaster ride.

Yet this doesn’t begin to capture the challenges, nor does it give you the whole picture, for we have found countless blessings and lessons along the way. Patience, courage, strength, perseverance, faith, compassion, perspective, grace, and unconditional love are the unexpected gifts Carolina has given us, and all whose hearts she touches.

Look closely at that pixie face, those doe eyes, and you will see beyond autism, to a free-spirited angel girl, my girl, Carrie.

Her Mama, Lynn

Dean has faced his challenge with autism the same way he takes on life – “head-on.” Most people who know him today could not begin to see or understand the challenges that he has had to overcome.

They can’t see the boy who suffered more than 130 stitches and nearly lost both ears and his life in a dog attack. They can’t see the boy who shied away from all eye contact and handshakes. The boy who would become upset with loud noises and had little control over what he said. The boy who was shunned and picked on because he was different.

Today they see an outgoing guy with no quit and a huge heart. A guy that works hard to overcome and get better with every challenge. A guy surrounded by friends and family who love him. An avid dog lover. A tenth grader that already has three varsity letters in two sports. This year Dean won second place in King County wrestling in the 285 pound weight class. He also won a state championship as a part of the Bellevue High School football team.

Dean is a great representation to all of us of what we can become despite our challenges.

Dwight and Yolanda, parents of Dean

It’s very hard to put into words how absolutely wonderful our daughter is to us. When you look at her, you probably don’t realize how hard she works every day to try to understand the world, and survive in it. She just sees and hears things differently than we do. Maggie has taught us so many invaluable lessons about life and ourselves – and mostly that being and thinking differently is OK.

It has been a long, difficult journey for us, learning to adjust to her constant challenges; but we have grown, and learned to accept her for who she is. She has taught us to be patient, work hard, to be accepting, and to appreciate the little things. Her challenges have also given us the opportunity to meet and work with many loving, talented, incredible people.

Maggie loves to swim and dive, go hiking in the snow, ride horses, and wrestle with her brother Jack. There is nothing better than getting a hug from Maggie, or hearing her laugh. She is determined, stubborn, adventuresome, playful, and loving. She continues to surprise and amaze us almost every day – with new accomplishments, and sometimes new challenges. Our family is blessed to be able to join and support her on her life’s journey.

the dream of little god lead poison

little boy born
to a poisoned greeting
throws the universe miles
takes seven steps back
proclaims himself master of heaven and earth

flaps his arms
takes flight
yet stays locked
in his own condition beyond our recognition in a world of his own babbling with only words and acts of peace as protection

he,
is for wonderful humanhood

he,
reminiscing on his view of the earth,
has given us real hope for the future

don’t start hurting feelings
of little god lead poison
build us a tower
to little god lead poison
to this small, forlorn, beautiful creature

and no one will resist falling in love with him

and everyone will want to protect him.

Ted, father of Sharkey

When Madison was diagnosed with autism a year and a half ago, I had no idea what our future would hold. At the beginning, there were many bleak days, but now I have been able to see all of the many ways that we have been blessed.

We have been blessed with amazing therapists, teachers, friends and family who want the best for her. Every single one of her accomplishments is celebrated by our entire team. I have also been incredibly blessed to meet other moms who understand what I am going through. I feel like at times it is a sorority that I didn’t necessarily want to join, but now that I am a member, it makes me appreciate these other mothers immensely.

Madison has a great sense of humor which has made those hard days much more bearable. One of my favorite memories of her is when she told me, “Oh mommy, you are my best friend.”

There are still rough days, yet I wouldn’t change her for anyone else. Although we still aren’t sure what the future holds for her, I know it will be a bright one.

Amy, mother of Madison

Hi, my name is D.J. I like when my family calls me “Deeg!” I will be 21 years old in January. I have limited speech, but I’m always trying to help others understand me. I’m very happy, mild tempered, and just a cool guy.

I love the color red. I love collecting sunglasses and shoes. I love plush toys because they are my “friends” and they help comfort and stimulate me. My favorite foods are: pizza, spaghetti, and lasagna. I love listening to music, watching T.V., or playing around on my computer or iPad. I also love going to church with my family.

My biggest struggle is communicating with people. I’ve had good and bad experiences due to my disability. This is why I’m extremely glad God has placed beautiful people in my life (my mom, sister Bria, and grandparents) who will always be there to help care for me.

D.J., in his own words

My husband, Charlie, and I had long awaited the birth of our daughter, Alyssa. She was so beautiful and happy – perfect in every way. Like most parents, we had high hopes and dreams for her, and the person she would eventually grow to be.

After a routine vaccination, Alyssa began to have seizures. She was left with profound developmental disabilities and, eventually, autism. The news was devastating, and all I could dwell upon was the life Alyssa would never have. I also felt tremendous guilt and shame, as if I had done something to cause what was happening to Alyssa.

I was determined to do everything humanly possible to make Alyssa “whole” again. We enrolled Alyssa in an early intervention program. We took part in numerous studies at the University of Washington. We were fortunate to have the resources to seek out the best and the brightest providers to become part of Alyssa’s medical team. We embarked on an incredible journey that would change us forever.

Alyssa has been in special education classes since the age of three. Now, at the age of 21, she is in her last year of public school. This June, Alyssa will “graduate” from Woodinville High School. However, for us, this is not the happy occasion it should be. We are being forced to confront the issue that has haunted us for years – what now?

What hasn’t changed for us are the dreams we still have for our daughter – that she live a happy, healthy, and full life that has purpose and meaning; that she live in a safe, nurturing, and accepting community amongst her family and friends; and that she’ll be given lifelong opportunities to realize her full potential and be all that she can be.

Alyssa has been our inspiration on many levels with her unconditional love and trust. She has transformed us, and we are better people for it. With Alyssa as our inspiration, Charlie and I, along with many supporters, are in the process of developing a lifelong learning, educational, and residential community setting where ALL individuals will be able to live the life they deserve, the life they’re entitled to.

So who is this beautiful young lady with the face of an angel? She’s a loving, sweet, and spirited young woman who has a smile for everyone. Someone who is completely non-judgmental, and accepting of everyone. The person who is Alyssa has touched and changed the lives of many – mostly mine. No picture can tell the whole story, but this is what autism looks like.

Barbara, mother of Alyssa

Shayan was born in 1996. Our life was ordinary and peaceful. We lived blissfully above Seattle’s Lake Union, where I watched the summer festivities from our balcony. He was a happy baby boy, but far from ordinary or peaceful.

Twice exceptional by autism and Tourette’s Syndrome, Shayan is truly one of the hardest working people I know, though it may not seem that way in our society’s eyes. He volunteers 4 times a week and walks 4 miles a day to get to school and volunteer sites. He has perfect pitch, has amazing recall of past events, remarkable spatial visualization ability and incredible taste in music. He LOVES cars, dreams about driving someday, and Disney Princesses!

Though loved by many who’ve known him since childhood, Shayan doesn’t have any friends, but working hard on it. Shayan is my moral compass, inspiration and EVERY DAY GIFT and I look forward to our next chapter together in his reluctant journey to adulthood

Arzu, Shayan’s mother