Autism is like 1000 deaths
Having a child with severe Autism is like experiencing a 1000 deaths. The first blow is the diagnosis which hits like a ton of bricks. A list of things my child might “never” do floods my thoughts. Will he ever talk to me? Will I ever hear the words I LOVE YOU? Is there regular school in his future? I wonder if he will live independently? Apart from his father, sister and myself will anyone else love him? Is there a first kiss in his future, a driver’s license or a special someone? I know the answers to all these questions are sadly “NO”.
As we (my husband and I) bare witness to other children reaching their milestones we are constantly reminded of the ones Keyan will never: first sentence, high school graduation, driver’s license, first job, girlfriend, degree, first apartment, career, wedding, baby, travel, athletic escapades and the list goes on. As parents we have to hold onto hope for our children and their future – that’s our job right?! People think I am being a pessimist when I point out the obvious – highlight the things he will “never” do. The most popular response is always « you never know ». The truth is I am a realist not a pessimist and I f&%?ing know my son’s limitations. Keyan will live dependant on others, never graduate, marry or have a first kiss. Only his father, sister and I will love him unconditionally.
Remember every time I (we) am part of your children’s recitals, graduations and weddings don’t tell me « you never know ». What you need to know is that every time I attend a ceremony I survive another death. The heart break is real. I don’t want to make you feel bad or uncomfortable. It’s important for me that you know what I am going through despite the smile on my face. Every time you say to me “you never know” you are denying my reality to paint another life which is not mine. As you say those words to me I die yet another death.
Why do I say a death? The pain associated with what my son will “never” do is worse than I can ever describe in words. I wish I had the vocabulary or wizardry of words to paint an accurate portrait for you. An impossible task. The life you have with your normal developing children makes it close to impossible for you to empathize with me. You can pretend to know but I am sorry you don’t know the real pain, heart break, frustrations, stress, disappointment, and suffering of it all. I need to tell you that parents to children on the spectrum suffer. We may not want to show you all the suffering but it exists, it is intense and very real.
It’s like a death because when someone dies there is a plethora of emotions we must live through. When there is loss their is a unique grieving process attached. I lost my father 3 years ago and my grandmother 10 years ago – the way my mother, sister, brother and myself each grieved differently for those losses. I felt as though no one understood what I was going through. After all I had a tumultuous relationship with my father but it never meant that I loved him less than my brother had. I cried many tears over the loss of my father and trust I always will. My mother on the other hand has to learn to live life without the person she spent almost 50 years with. Her grief is different than mine. When we grieve it is a very lonely process. We have to learn to deal with the pain and go on. Yet when someone dies they die once and with time we learn to live without them. Albeit losing a loved one the grief makes it hard to see that with time we will move forward. We will never forget the person we lost (they live within the fabric of our souls) and every once in awhile we find ourselves crying for we yearn to be with them one more time. One more hug, kiss or laugh –another millisecond of togetherness. The truth is the intensity fades but the grief never truly goes away - but it does fade.
Having a child with Autism or any other severe disability means we die 1000 times.
Please give us the space, patience and grace to experience our deaths.