I happen to have 2 grandkids on the spectrum. I see their gifts. I see their challenges. I see the courage and fatigue of their devoted parents. This means that as their grandma I am divinely and willingly self-appointed to be a steward for their well-being. My calling is to love them passionately just as they are and with equal passion open the whatever doors and clear whatever hurdles necessary to foster their highest and best. Don’t mess with Tutu. I am here to make way for their light fully shine in any way I can and to demand that their gifts be respected. And, I apparently birthed two amazing advocate daughters devoted to doing the same.
The most recent statistic is that 1 in 50 (or 1 in 68 depending on which research source you read) are coming in on the autism spectrum. When we started the journey with my grandson when he was almost 3 the rate was 1 in 150. Only a couple of years ago it was elevated to 1 in 88. And now 1 in 50.
Why, why, why? Is it vaccines? Pollutants? Better diagnosis? Is it the definition of autism that is shifting? Does it matter? Of course it does, but arguing over our differences of opinion keeps us from serving these families and the kids they love.
What I do know is that when I was a young autism and other spectrum disorders were seldom if ever heard of. Those kids were hidden away and often judged as crazy because there were few ways of relating with them. Being with autism is not easy. By the time my kids were in school, autism was that odd kid who ate paste, made funny sounds, or was considered ‘geeky. ‘ Fortunately my kids were part of an Open Education Program built upon accepting differences and applauding individual gifts, rather than insisting on conformity. And, now made even more aware by having a grandson with ADHD and one with autism the story of a child with autism is only a conversation away. As parents, teachers, doctors, caregivers and grandparents we are struggling with how to best serve/tolerate these kids when our school system and culture as a whole is still painfully ill-equipped. As a former teacher myself I have great empathy wondering how a teacher can be expected to truly teach when one child is allergic to peanuts, one cannot tolerate loud sounds, one cannot be touched while another needs constant ‘squeezes’ and most kids on the spectrum can’t stay focused on the group task at hand very long with 37 kids in a classroom! And yet each child deserves the opportunity to learn. Each teacher at their core wants to make a meaningful difference. We all want to thrive rather than merely survive.
Last summer I spoke at the 44th Annual Autism Society Conference on “Finding Happiness in Unlikely Places.” It was here that the ‘1in 50′ statistic was announced. My initial reaction was despair because of my first-hand awareness of how overwhelming and demanding caregiving a child with autism is. Although there are more and more resources becoming available to support these kids, there is little no true respite and support for the caregivers and parents. Feeling deflated by this news I reached for a transformative thought to help me make sense of ‘what is.’ The best I could come up with was that at least we are now only 50 away from knowing that we are all one. It is our uniqueness that makes us who we are, not our differences. Celebrating this is the path to world peace. These kids are our peace pilgrims.
These amazing, brilliant kids are here to change the world. We desperately need their insights and to learn how to celebrate their intensity. It was Einstein who said, “No problem can be solved from the same level of consciousness that created it.” In their own edgy ways, this is their gift. Autism is here to help us broaden our perspective and to teach us to be more patient, kind, flexible, and intuitive. These precious children are here to make us more aware that we no longer can expect the child to adapt to the teacher or curriculum, but rather the teacher or curriculum must follow and be prompted by the child’s learning style and interests. Most important, these kids are here to pave a bumpy path that will teach us to shed judgments and embrace differences, and only if we will surrender control and open our hearts fully.
My journey with my grandson’s autism came when early intervention was possible if you fought for it, and our determination resulted in the power that comes from blending acceptance, building a trustworthy relationship as directed by the child, and finding the magic mix for healing and listening to a child’s bio-chemistry and sensory needs. The path continues to unfold with hills and valleys. We grope along on this personal growth journey we otherwise would have not chosen and remain pioneers in the land of autism with few definitive answers. We continue o hold one another up, deepen our commitment, and ride the unknown trusting our gut, for some spelled God by whatever name you choose.
These kids are the ‘canaries in the coal mine’ alerting us to the reality that our environment has become a broken place that affects a growing number is harsh ways but, regardless of what happens to be the unique tipping point for each child or the approach taken to manage the effects, a mother’s intuition is essential and needs to be honored at the helm. Each family faced with autism faces the challenge of defying protocol at some point along the way, which calls for courage. It takes its toll on marriages, too. We all are making it up as we go, doing the best we can with what we have in any given moment, reserving the right to change our minds. What is true is that we will do anything for our kids, and through trial and error we are paving the way for the growing number that follow to have a better experience.
At this conference I had a rich opportunity to learn from parents with adult children on the spectrum, those who started their journey with autism when few compassionate resources and little or no support was available. Early intervention was not an option then, and I am not sure if it comes from needing to make peace with the challenges they faced as a result, but many I spoke with accepted their reality rather than expressed regret. It was helpful for me to become more aware of this expanded timeline of autism when parents were even more isolated than now in their attempts to help their kids.
We all continue to stretch for greater understanding of something that often doesn’t seem to make sense. The autism community itself is fractured with judgements that range from “There is nothing to fix” to “I will do whatever it takes to ‘cure’ my child.” There is no certain path, no ‘one size fits all’ approach to autism. It is easier in the face of autism to give up, but as far as I have witnessed, kids with autism most often choose resilient parents. They may not have started our as strong parents, but have been made durable by loving someone with autism.
What I am certain of is that there is still so much we don’t know. More and more adult kids with autism have become articulate enough to break though and share their insights of their journey with autism by having lived it. With their valuable input we no longer need to assume and make it up that we know what’s best. We have their guidance, their spiritual depth and their ability to think outside the box, their expanded way of thinking that will help us find our way.
The truth is that with 1 in 50 coming in on the spectrum, your life will, if it hasn’t already, be touched by autism. So use the month of April as your opportunity to consciously stretch your awareness, understanding and compassion. Become more patient, tolerant, insightful,l and generous. Look beyond differences, whether subtle or severe and assume someone wonderful lives inside. Learn more about the challenges kids with autism face and offer respite when you can for those depleted in it’s wake. Trust each child with autism is bright, spiritual, wise, sensitive and determined with an important gift to give. Open your heart to them, their parents, their teachers and all who love them. Focus on our oneness and see the blessings in our differences.
Thanks to all who have helped to foster the well-being of my kids and grandkids in all our forward and backward steps on unfamiliar ground. The journey of autism, as the journey of life, is only about 16 inches. It is the journey from your head to your heart. Love somehow always is the answer to every question.
Nudge the conversation forward. I am interested in hearing how sharing my thoughts have stirred up your own.
Joy-fully, Rhonda
P.S. I would be happy to offer my talk on ‘Finding Happiness in Unlikely Places’ to any group of 10 or more during April if we can find a way of getting me to you! Contact me to explore possibilities. Rhonda Hull, Ph.D. Speaker, Mentor, Author
Phone: 360-385-5850 Website: http://www.CenterofHappiness.com Facebook: facebook.com/TheCenterOfHappiness[/vc_column_text][/vc_column][/vc_row]
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