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Invariably, when I write about some aspect of our life with autism, my thoughts on autism, my feelings about some part of the autism life--someone out there reading it can identify with just about every word. I tend to look at this as The Autism Condition.
The Autism Condition includes:
Worry. Worry about our children. Worry about our family. Worry about our marriages. Worry about our own health. Most of us worry ourselves into some serious health related conditions. Which then leads us to think about our own mortality and thoughts of what will happen once I die. Who will be the champion for this child if I'm not there to do it?
Guilt. As I posted earlier, guilt is a monumental force in our lives. We feel guilt and agony over every decision we make--because the decisions we make are so much greater than the average decisions made by average families across the world. It's not about Charmin versus Angel Soft here. Every action and reaction can be felt for years to come in this child's life. Guilt and regret--twin forces of pain we deal with for a variety of reasons. The 'Did I do enough' and 'Can I do more' thoughts that will plague you the rest of your life.
Pain. Physical pain cannot hold a candle to the emotional pain experienced the first time a child calls your child 'retarded'. All the looks we get at the grocery store, restaurant, library, and any other public place comes to resonate in your brain till all you see are condescending glances and all you hear is well meaning but often misplaced advice.
Insomnia. Whether it's because your child is literally the sleepless wonder of the world or if you are left sleepless because of all the above. For most parents, the sleepless nights revolve around infancy--a relatively short period in our children's live. Our sleepless nights last a lifetime.
Joy. Utter and complete joy over the most simple of what life has to offer. A smile. A word, 'mom' or 'dad', spoken for the first time at age 5. A hug, freely given for the first time at age 10. A friend first made at age 12. The things forgotten by other parents are what we take such overwhelming joy in. We cherish and treasure those things in life that others simply gloss over. What other parents put in a baby book, we have permanently etched upon our hearts.
Thankfulness. Our day of thanks isn't just in November, we give thanks far more often. Thankful for all the fundamental elements of life our children teach us every day. We are simply put, better people for the children placed in our lives.
Hope. When doctors, therapists, educators, family members, and others have said there's nothing you can do--you still had hope. Enough hope to push through the boundaries and prejudices our children face to change his or her life for the better. When everyone else gave up, you got creative. You still believed. When everyone else said 'it can't be done', you said 'watch me'.
All these things make up the collective 'Autism Condition'. We all feel the same depth of despair and the same level of wonder and amazement. We all get tired and think there's just no way I can do another day. We all feel that rush to the head and the heart when that last ounce of perseverance is unearthed from the depths. We are all looking for that great pediatric dentist. It doesn't matter where your child falls on the autism spectrum, what his or her abilities are, or what specific label he or she has. It doesn't matter if your child is 24 months or 24 years, we are on the journey together. This is The Autism Condition.