Issue 86 / March - April 2012
For the Sake of Autism...
The courtyard vibrated at the sound of the school bell. Immediately the playground burst into life as children began to stream out of the classrooms and into the warmth of the afternoon. Like kittens released from a cage, they began to scatter - heading in all directions towards awaiting parents and friends.
The door to room 153 opened and a blond-haired, blue-eyed boy walked out alone. His eyes went immediately to the spot where he knew she would be waiting. "Mommy!" he squealed, and a smile brighter than sunshine burst across his young face. His lanky legs kicked out at a slightly odd angle as he ran towards the one person he had been waiting to see since 8:30 am that morning.
As he got near, he shed his backpack. As Mom welcomed him into her arms, the hug nearly knocked her over. "I missed you, Mommy!"
This is how you will find me at 2:30 pm every school day of the year. My name is Kimberly Parker. I am a mother of three children. My oldest son, Cooper, has autism.
When Cooper was born, I ended my career as a Sales & Marketing Director to remain home with him. I embraced this plan, as it allowed me freedom to not only spend oodles of time with our son, but also gave me time to work on creative projects, particularly writing, that I had abandoned in my climb up the corporate pyramid.
When Cooper was 16 months old, we realized he had significantly stunted language development. Specialists were seen, and we soon knew that the challenges we faced had a name: autism.
Fast forward 5+ years. Our family now consists of Cooper, age 8; Benjamin, age 6; and Kacey, age 4. My husband and I have worked hard to keep our heads above water while meeting our family’s needs, and our extended family and friends help us tremendously.
Even with all of the help, I know my son better than anyone else on this planet knows him. I say this not to sound prideful - it is a matter of fact. My husband is a wonderful father, however, since I am the person who is with Cooper the most, out of sheer desperation I have had to learn to understand my son by merely looking into his eyes. His language processing challenges make it difficult for him to understand things in the way typically developing children do.
Most parents of children with autism are in a similar position. They are the experts in dealing with their children. Because our day-to-day functioning depends upon it, we parents have to learn how to build relationships with our children. These relationships serve as the foundation for everything else that happens.
The problem is that the thousands of children who have autism will, one day, grow to be adults with autism.
I’d be a liar if I said that the question, "What will happen to my son when I die?" does not at times keep me awake at night. Does anyone know him better than I? Is anyone in a deeper relationship with him? Does anyone love him more than my husband and I do? When the loving, knowledgeable caregivers of these children pass away (which inevitably will happen), is our society prepared to care for people who are unable to fully care for themselves? It isn’t right now, but it can be.
Never mind 72 hours, 72 years would probably not be enough to fully prepare my son to face the world without the mother to whom he is attached. However, I believe that in 72 hours, I can ignite a fire that can help prepare the world for my son.
Many schools have begun to implement programs to teach kids about the various disorders and disabilities which are increasing in alarming numbers. Each school year Cooper’s classmates learn, to some degree, how to function in the classroom with a peer who has special needs. At the beginning of the year, teachers talk to his peers about autism. Kids learn that Cooper has challenges, and they are told that they must be accepting and helpful friends to him.
This is a good beginning. But it is only a beginning.
Is it enough to teach them how to co-exist in a world with people who think differently, who communicate differently, and who have extraordinary needs?
I don’t believe so.
Kids don’t simply need to learn how to tolerate one another - they must to learn how to build relationships with one another. Those who are different do not need to be merely acknowledged as different - they need people to come alongside them, people who will seek to understand the depths of their individuality.
When a child with autism is alone on the playground - it isn’t enough that other kids refrain from bullying him. Can even one child dare to come close and seek to engage him? And when that doesn’t work, will the child be content to sit near him and just share the same breathing space - because he or she understands that for a person with autism, simply having someone nearby can be enough to foster feelings of acceptance?
My vision is to see a system implemented in our schools in which children learn how to be intentional about building better relationships. We can empower and equip kids to care for their peers in a way that goes way beyond tolerance. No matter what their age, kids can learn skills at a level they can understand. Intentionally building upon these skills throughout their education will not only build a better world for kids with autism - it will build a better world for everyone.
There are experts who have dedicated their lives to helping autistic children and their parents learn to build relationships with each other. There are others who have developed peer-to-peer training sessions for school use. I believe we can take the knowledge from these experts, combine them into a complete program, and teach these skills in our schools so that parents are not the only ones who hold the key to their child’s relationships.
In my 72 hours, if given the resources, I would engage three experts: Dr. Steve Gutstein (Relationship Development Intervention specialist for children with autism), Dr. Gordon Neufeld (expert in attachment and anti-bullying) and Heather McCracken (founder of Friend 2 Friend Learning Society). They have each developed materials that address different components of this problem. However, if these experts came together, I believe a complete, life-changing strategy could be designed and presented to educators.
In 72 hours, I would seek for the four of us to spend a day brainstorming what this plan could entail, and then gather as many educators as possible to cast a vision and ignite a fire: from parents and teachers to University Education Department Heads to U.S. State Educators to the Canadian Minister of Education and all the way to the U.S. Secretary of Education. This fire would move them to action to see a new type of preparation brought into schools. Not for the sake of another program or something "to-do," but for the sake of building a society of people who know how to love selflessly, to prepare them for life together.
With myself as the parent-champion, my son at my side, and Dr. Gutstein, Dr. Neufeld and Mrs. McCracken to speak about the psychological benefits and technical aspects, we could introduce them to a new way to do "tolerance" in the form of attachment and relationship building in peers.
The 72-hour period was filled with a whirlwind of activity. Along with the field experts, Mom and son spoke powerfully to hundreds of people, presenting a radical vision. They shed light on the magnitude of the problem that autistic children and adults everywhere encounter. They also began an awakening of the need to prepare for a world to come. They saw faces light up with passion and high-level educators commit to not letting the dream of a selfless society fade.
As Mom hugged her son for what she knew would be the last time, her heart was not heavy - it was full of hope. Surrounding them were hundreds of outstretched arms which she knew would take her place in helping this little boy for the rest of his life. And as she said her final "I love you," she knew that her life had been well-lived.
In 2004, Kim's son was diagnosed with autism spectrum disorder. She writes to equip others to better understand autism and the families who love the autistic. She enjoys connecting with parents facing the seemingly insurmountable challenges of autism and helping them find joy. She is also a Christian author and speaker. Her first published book is called Radical Love...Forever Changed. You can follow Kim's blog or connect with her at www.SimplyCreativeWriting.com.