I never once imagined what types of challenges a family with a child with special needs faces until I had one. I never even considered their lives as perhaps different from my own until October 26, 2001 when my middle son, Wesley, was handed to me in the delivery room.
Since his birth his diagnosis has changed. New ones were added and some changed entirely. When he was ten years old the diagnosis of Autism was added to his resume. It did not come as surprise like the other diagnoses. This one was entirely expected.
When I speak about the world of autism to friends with typical children more often than not I receive one of three reactions. Sometimes their eyes glaze over and I can tell I am not speaking the language they know. Other times I am greeted with looks of pity and I am certain they do not understand. Yet other times they look at me as if seeking to understand but always as if looking through a window. They could not know my life in any other way other than peering into it but never stepping into the room.
The world of autism is a colorful, bright, confusing world. It often does not make sense to me but it doesn’t have to. It is seeing the world through the eyes of my son whose brain does not process information like mine. Sometimes it is a beautiful opportunity and other times it is heart breaking.
The world of autism is challenging. It is living in chaos while maintaining strict regimens. Deviations from the schedule can be catastrophic. Autism is violent and melt downs occur at any place and anytime. It is stubborn and unyielding at times.
The world of autism is beautiful. It is a place of unconditional love. A place where it doesn’t matter what you did or who you are. You are a beloved friend. Autism is loving others with reckless abandon. It is laughter over the silliest things and sometimes over nothing at all.
The world of autism is tiresome. It is constant exhaustion and being at a heightened stage of alertness at all times. It is trying to be one step ahead, attempting to predict the behavior of an unpredictable child. I am rarely rested or relaxed.
The world of autism is celebratory. It does not matter the size of the accomplishment but that progress occurred. We celebrate everything. Wesley put his cup on the table instead of throwing it across the room – celebrate! He put three signs together – celebrate! He got out of the car in under twenty minutes – celebrate! Autism does not allow anything to be taken for granted.
The world of autism is hilarious. I have developed a sense of humor to get me through. When the school emailed me to tell me Wesley was taking off his shoes and throwing them at people I couldn’t help but laugh and have a slight sense of pride. After all, he had put two skills together. He took his shoes off AND then threw them! Each one had taken years of physical therapy to accomplish. In the world of autism I laugh far more than I cry.
The world of autism is triumphant. It is reaching in and finding more energy, more patience, more wisdom, more knowledge, more everything in order to be the parent my child needs me to be. It is the fire which refines me into a better mother, daughter, and friend. I am a better human being because I know autism.
The world of autism is a blessed place. It is an impossible place on some days. It is an eclectic place every day. It is an amplified existence where the highs are higher but the lows are lower. It is not ordinary. It is our world. We can love it or we can hate it but we must live in it.
I am now not who I was on October 26, 2001. Not only did my life change the next day, my entire world did. I went from one reality to another in the amount of time it took for my then husband to say, “the geneticist will come tomorrow.” I did not have time to pack my bags and plan a trip. I had no opportunity to brace for impact. I found myself in a strange land with a different language and I learned as I went along. However, now I am stronger. I am wiser. I am unconquerable because my son has shown me how to be. I learned to be a warrior by watching him work for every milestone and from the other mothers who showed me their beautiful scars.
Our child does not “suffer from autism.” He has brown hair and green eyes. He has autism. It is part of who he is. He knows no other way to be. He does not look at his siblings longing to be like them. He knows what most of society still needs to learn – he is perfectly whole in spirit. I do believe he is more complete than I am. He is the most entire soul I know and it is an privilege to be his mother. It is my highest honor.
When I first met Autism it was as an adversary to be feared but became a constant companion. It is understandable. It is acceptable. It is even lovable.