When parents have a diagnosis dropped on their child, we usually have a lot of grief about all the things he or she will never get to do or be. When Patrick was four, we entered into this dark post-diagnosis place unprepared and scared. But what we discovered instead is this non-typically wired brain is actually a free pass into some amazing and unexpected gifts.
It is not typical for seven year olds to use summer break to find out what 2 to the 200th power is, to create his own code for numbers.
It is not normal for an eight year old boy to intervene when larger boys are hurting a small bird and not understand the consequences.
It is unusual that a child can teach himself four different musical instruments and converse with the piano tuner about “growlers.”
It is unprecedented that a fourth grader would stand before his classmates and explain why he is not like them and tell them that bullying is wrong.
We are done grieving all that our child will never do. Now instead we tell others about our amazing boy with autism. If enough people only knew what we know, his future would be without limits.
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
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 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.
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
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
is for wonderful humanhood
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
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
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
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
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
Krizia enjoys playing on the computer, riding horses, travel, babies, music and dance. Kriz loves to watch, “Dora the Explorer”, “The Backyardigans” and “The Hoobs”. She joins the North Whatcom Special Olympics.
Our hope is to enrich our daughter’s life despite her challenge of dealing with Autism. Our faith is that God has blessed us and will provide us with the strength to succeed, “with Christ, all things are possible.”
Bebanie, mother of Krizia