At 2 years and 4 months Cooper was diagnosed with PDD-NOS. Although I was in complete denial for the weeks and months to follow, deep down I had known for a very long time. He was an exceptionally “good” baby, meeting all of his major milestones just inside the late end of “normal”, and even though I was a first time mom who had spent very little time around babies – I knew something was different. To this day I can’t explain how I knew, mother’s intuition I suppose.
When Cooper was around 18 months old, my husband, Grant, was deployed to aid in disaster relief operations for hurricanes Katrina and Rita. He was gone for 6 weeks. During that time Cooper began regressing, he started asking for “dada” all the time, I assumed he was just missing his daddy and didn’t realize until later that during that time he lost most, if not all, of his other words.
Cooper has been in weekly speech therapy since shortly after his 2nd birthday and weekly occupational therapy followed soon after. Desperate to feel like we had some control over this situation, biomedical therapies, diets, shots, supplements, listening therapy, chelation, and test after test after test followed. Despite all of that we were seeing very little progress. Two years ago, after 13 painful months on a waiting list we were able to get him into an amazing preschool designed specifically to meet the needs of children on the autism spectrum. Under the love and care of the wonderful teachers, therapists and staff there we have watched as he has blossomed.
Although he isn’t ‘conversational’ yet, he is now able to make requests to get his needs met. We certainly still have “days” but they are less severe, fewer, and farther between. At 5 years and 5 months Cooper is now “in our world.” It has been a hard fought battle and we still have a long way to go, but we are no longer ‘cautiously optimistic’ – simply optimistic.
Being a parent is hard; being a parent of a special needs child is hard to put into words. There are times of desperate isolation, when you’re just certain without a doubt that no one knows how you feel. There are times of overwhelming helplessness when you realize there is nothing in this world that you can do to take this “thing” out of your child’s life. There are moments when you feel yourself drowning in guilt although you know in your head there was nothing you could have done differently.
So I suppose my point in all of that is two-fold. First, to relate this back to art, art is truly therapeutic for me; my work has helped me through some very hard times and on many occasions helped ward them off. I know how truly blessed I am that my outlet/therapy is also my job and a big part of who I am. There is some sort of synergy there, most of my work, in one way or another, is inspired by Cooper and his struggles and victories, by the way he sees and interprets his world, by funny things he does or says, by his boldness and fearlessness to simply be just who he is without filter.
Secondly and more importantly – is to give some honest insight and to promote autism awareness. If you have concerns about your own child, force your pediatrician to hear your concerns, ask again and again, don’t let your concerns be dismissed – trust your gut. The earlier intervention begins, the better the outcome, I wish I had pushed harder. If you know a parent of a child on the spectrum, especially a newly diagnosed child, whether they realize it now or not, that family is overwhelmed and more than likely is grieving. If you can, offer a helping hand, any small gesture, odds are it will make a big difference. And if you see a parent struggling with a screaming red-faced child, perhaps sitting in the floor at Target, kneel down – look her in the eye and without fear ask her what you can do to help. I can smile about this now, partly because it hasn’t happened in a while, but mostly because I can still see the faces of all the kind souls who have done that for me.
As a result of Cooper’s disability I have learned a great deal about the world and the unlimited kindness out there. I have also learned a lot about myself. He has taught me patience and to such a degree I never dreamed possible. He has brought our family closer together. His needs have brought many wonderful, knowledgeable, kind and caring “angels” into our lives. He has made me open my eyes and heart to people and ‘things’ I might not have otherwise. And without a doubt, he is an overwhelmingly inspirational force.
My goal with this project, other than having fun with my son, is to celebrate his strengths and accomplishments while challenging myself as we work together within his abilities to make a beautiful body of artwork.
