Trigger Warning: Parental despair
Five years ago I was in a bad, bad place. Life felt unbearable. The future loomed ahead shrouded in fear. I could not imagine a life that was not bleak and filled with pain. There were times when I could not bear the thought of another day. There were times when I felt it was all too much. People would make kind suggestions, but none of their words made sense to me. I was sinking and saw no light. I thought it was because of my specific circumstances. I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her. I was told she couldn’t comprehend this world. I was told concepts like less and more, time, currency were beyond her ability to grasp. I was told she was in her own world. Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children had.
I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed… There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry. I cried for myself, but I also cried for my child. I loved my child. I ached for my child and what seemed to be her inevitable future. Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being. I had fantasies of “heading north”. I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.” Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing. There was a part of me that meant it. I wanted to leave all that pain behind me.
There are those reading this who will cringe at this description. There are those who will judge me and what I once felt. There are those who will point out how self involved all of this sounds. They will say, but how could you not see that what you were feeling was affecting your child? There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror. I understand those responses too, because now, I catch myself feeling those feelings too.
My daughter has defied everyone’s expectations, including ours. She is writing now.
She is writing such incredible words. Sometimes a sentence may take her five minutes to construct. I would cheerfully sit for thirty minutes or however long it takes for her to express herself. Parents hear about my daughter and they say, “Ah, but my child isn’t like that.” And so I ask, “How do you know?” Parents say, “I know my kid. He/she isn’t able to understand.” I once believed that too. And so again I ask, “How do you know?” Parents say, “I know my child better than anyone.” I once said this as well. I thought I knew. I believed what others told me. She would laugh and then run full force into a cement wall, using her head as a batting ram. We would get the dreaded phone calls from her school. All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.” “She does not know the value of a penny.” “We will continue to work on sight words.”
Today my daughter is enlightening me. If you want to know more, read “How We Got Here“. Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.” Her school is now trying to learn RPM so that she can write with them too.
I cried when she wrote that. I cried because I didn’t know until recently. I cried for all the years when she had no way of telling us. I cried for all the times I didn’t believe. I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams. I cried for every single parent who has ever felt the way I once did. I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them. I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.” I didn’t dare hope that one day my daughter might be writing the things she now writes. I didn’t dare hope, it hurt too much.
To the parents who feel overwhelmed with fear and despair – I was once just like you. Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant. I’m grateful now that I didn’t find such a group because there’s another way. I found another way, but not before making many, many more mistakes. This blog documents a number of the mistakes I’ve made over the years, but not all of them.
If there’s one thing I want to say, it’s please, dare to hope. Without that we are all lost.
*As always, I asked Emma for her permission to publish this post.
Wretches and Jabberers
Mark Utter’s I am in here
Ido Kedar’s book: Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.
Emma getting ready to write