Many people seem to arrive at my website through an autism or asperger’s internet search. I’ve seen everything from “my autistic son walks in circles” to “I hate my autistic child”. As you can imagine, it hurts my heart when I see some of the more upsetting search terms. When I first saw the search about hating their child, I immediately began a blog post addressing it, but I stopped myself half-way in. The truth is, I can understand that moment, when you are so angry and hopeless and powerless over your situation and you feel such huge, overwhelming emotions and you desperately seek relief or answers. I probably have turned to the internet on more than one occasion, searching for similar help. I get it.
I recently saw a blog post on Blogher.com by a mother of a child on the spectrum, and she was talking about how she will not be one of those mommy bloggers (a term that I hate, by the way) that goes on and on about how terrible her life is because her child is autistic. She talked about how her child was unique, but that her life was enriched because of it. She did not care for the parents who have have blogs talking about the downside of autism. I guess, in her world, there is no downside. Or, she’s in denial and drinks.
I think that, when you are parenting a child with autism, your emotions and feelings run the gammot- from joy to anger, from love to hate, from elation to desperation. I don’t think that you ever hate your child, but there are times when you most certainly hate what your child and family are going through because of autism. There is a mourning period that you go through when you realize that the life that you planned, the family that you dreamt about becoming, was not going to play out the way that you thought it would.
I did not grow up in the typical family- my mother was (and still is) a lesbian (a dynamic that was far less accepted in the 80s in conservative Orange County, CA than it is in modern, liberal Portland) and my father was an alcoholic who got clean but never dug out of his depression and ended up taking his own life when I was in my early 20s. I lived with my father and an abusive stepmother through my teens until I moved out on my 18th birthday. My life was not the stuff that Norman Rockwell paintings were based on. It was not all bad, but it did not have the kind of relationships that I saw that my friends had in their families. I wanted two loving parents under one roof- I didn’t care if they were the same sex, I just wanted happy, supportive and loving parents. I did not have that, so when my partner and I decided to start our own family, it was my chance to create the kind of family that I’d always wanted.
Obviously, that Norman Rockwell picture didn’t quite come to life in my own family. We are as happy as we can be in our situation. We are adaptive and learning to define a new ideal. We are open and accepting and finding ways to communicate that we didn’t even know existed. Our language is different, our paths to solutions are newly navigated, we are writing our story as we go along, because this family that we have is not what anyone could have known to wish for.
I mourn the loss of the family that I really wanted to have. I do. But at the same time, if you meet me, you’ll know that I radiate happiness and joy. I smile incessantly. I have a spring in my walk. I suffer from depression and have days where I don’t want my life anymore, but more often than not, those days are fewer and farther between. I have a lot to be thankful for. My family has provided me with challenges that enrich me and force me to grow in directions that are new and exciting. Every day brings a strength that I didn’t know I had. And every day, my son brings joy to my life.
He knows that we try to help him. He gets it. In his own, 5 year old way, he knows that we struggle to remain calm in order to help him through. He scares the crap out of himself with his melt downs. He throws things at us, he hits us, he tells us he hates us, he wishes us dead… and then he breaks. And when he does, he runs into our open arms and begs for forgiveness and cries from his soul because he knows that he needs us and wants us and loves us. And he knows that we never ever stop loving him, even when we hate the autism.
If you came here because you’re in the middle of one of those moments where you feel like everything is falling apart, you are not alone. For whatever reason, you were chosen to parent a child with special needs and you have an amazing strength that lies deep down to get you both through this. I don’t know your exact situation, but I know your anger, your fear, your sadness, your exhaustion, your hopelessness. In those times, I will share with you my strength, my joy, my hope, my energy and my belief that you will get through this. You will, you just have to take it minute by minute, hour by hour, day by day. When the moments are good, savor them! And when the moments are bad, remember that they are only moments and not the truth of your entire reality.