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Autism Diagnosis: An Unexpected Journey

Last night, at the Fourth Annual Autism Speaks Classic at Baltusrol Country Club in New Jersey, Sarah Schwarz gave a moving speech about her son Cameron who is affected by autism and how her family is involved in Autism Speaks. She references the famous poem 'Welcome to Holland' and ended to a standing ovation. 

"I'd like to begin by reading a portion of an essay called, Welcome to Holland, by Emily Perl Kingsley.

Cameron Patrick Schwarz, my third son, was born on his due date - January 9, 2008. After laboring in the quiet of the night in our home nursery, John and I left at 6 am for the hospital. Our precious baby boy arrived into this world at 6:30am. A grey, drizzly night had blossomed into a brilliantly gorgeous day that began with the appearance of a rainbow moments after his birth. Despite some minor complications that sent him to the NICU for 4 hours, Cameron was 8 lbs 9 oz of perfection. A beautiful boy, a calm disposition- another blessing to add to our family.

When Cameron was around 15 months, we realized his speech was quite delayed. We had Early Intervention come to our home and a therapist worked with him until he aged out at 3. Next, he started the public school PreK handicapped program. After a year in that program, teachers were concerned that he was regressing and not happy. They felt he was not getting what he needed in the program. Immediately, we had him evaluated by Dr. Shelly Lanzkowsky, a pediatric neurologist out of Atlantic Health Systems. She confirmed what, in our hearts, we already knew. Autism. She recommended an intensive ABA (Applied Behavioral Therapy) program which fortunately, our public school offers. He is currently in a full day, self contained Kgarten program that addresses his needs very well. Since last January, when he was placed in an ABA class, he has shown marked improvement in his language. Although he is still quite delayed, he is progressing.

This is what we focus on. Progress.

Although Cameron's autism is high functioning, he has significant speech delays. It is difficult to express his thoughts in a "typical" manner, rather "parroting" much of what he hears from other people, television,  movies, or from school. His receptive language is quite delayed as well, making it very hard for him to answer questions that most 5 1/2 year olds can do with ease. Cameron struggles with developing friendships with peers because of anxieties and language issues. As his mother, my heart aches for him. Sensory problems create other challenges for him. He will not put his head under any body of water. Getting his body in to water is generally uncomfortable to his skin. Most often he dislikes taking a bath. Changing from one season to the next with clothing is difficult as well. Currently, he will only wear a brown stripped shirt every day. This predictable habit of consistency helps him to feel safe. Last year for nearly a year, he wore several dozen mardi gras beads around his neck every day. People thought it was cute; they didn't' realize it was to help him feel grounded. Cameron does not like to be hugged or kissed. Only if I tell him I have a boo boo on my cheek, will I get a kiss. He does not like to be held unless you twirl, flip, bounce or toss him in the air. Fine motor skills are very delayed - he struggles to grasp onto crayons and pencils comfortably. His diet is rather limited. Currently, he lives on Ellio's pizza- even for breakfast! Despite his nutritional inadequacies, he still manages to grow significantly each year. Visual stims have been a predominant problem. Often when in public, these "non-typical behaviors" - the stimming, or the "parroting speech" will catch the eye and ears of an adult or curious child.  Although I've gotten used to these curious or judging stares, it will often still tug at my heartstrings.  

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Ten years after "Welcome to Holland" was written, an anonymous author wrote a follow-up essay. In it, she says

"I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends....many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad."

For John and I, Autism Speaks has been that community. We have been embraced by this new family. We were provided with resources and guidance. We felt safe in this home where our child could be accepted, not judged. We were among compassionate, caring and helpful people. We no longer felt alone. We now have HOPE.

We are grateful to Autism Speaks for this gift.

In this hope, our eyes were opened to the beautiful gifts Cameron brings to our family and to the world.

He is a very happy boy.

He smiles and laughs a lot.

He loves climbing on the playground....trees... my French doors... the window sills... staircase banisters.  

He loves using the zip line my husband installed in our backyard.  

Cameron loves to endlessly swing on swing sets, bounce and flip on trampolines or beds or sofas...

 Cameron also loves music and  dancing! He is obsessed with playing The Wii - Wii Dance specifically. I dare any of you to challenge him to a dance off!

Cameron loves to hide in forts with all his light up toys and flashlights.

He loves the moon and stars and fireworks- things that are bright and shiny.

He loves to be tickled. Hearing him say, "Tickle me Mommy!" is music to my ears and warms my heart. This is when I get to be affectionate with him.

He finds comfort under heavy quilts and blankets.  At bedtime, he reads a few books with his Dad.  This is a tender, bonding time he shares with his father. That is his time to be affectionate with his son.

Cameron has autism. But autism does not have Cameron. We don't define him by his diagnosis. We embrace him for all that he is and all that he brings to our family. He is a blessing. No, we didn't land in Italy. But that's ok. We've accepted that. We landed in a world of windmills, tulips, and Rembrandts... a world that also have rainbows, just like we saw moments after Cameron was born. "

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.