Being a parent is a full-time job, regardless of the fact that I work outside of the house. And, early in my parenting journey I learned that part of that job would include acting as the “Autism Manager” for our life. It certainly was not a job I expected. I never imagined that autism would be a part of my parenting journey in such a real and all-encompassing way. But, along the parenting journey we rarely get to choose the things that our children will need from us. So we take it as it comes. Each day. We learn what our children need from us. And because of our love and adoration for our children learning what they need and giving them what they need and becoming what they need becomes your life’s mission.
When I became the “autism manager” for our family I learned quickly that I needed to make every effort to separate my emotions from the day to day pieces of this journey. The good the bad and the really really ugly. There is a time and a place for my emotions, but not inside of the thousands of meetings and decision that would lie ahead along our journey
This sounds impossible, right? After all, it is unnatural to remove emotions from anything pertaining to our children. And if I am being completely honest, it felt impossible. But, it also felt necessary. So I learned to separate my emotions from the scheduling and programming part of Grayson’s autism.
In Grayson’s autism treatment we meet bi-monthly with our top team in the program. This is 1 hour of time that I get 6 times a year with the head Psychologist in charge of Grayson’s program. And, I value every moment of this precious time.
I go to each meeting prepared with lists and talking points and clear objectives. We start by running through high points and low points of Grayson’s general progress and then we begin to dive deeper into specific behaviors. We brainstorm interventions and we talk about how Grayson’s symptoms will continue to change as he gets older and his speech continues to develop. And once we have laid out a plan we end the session with casual niceties and I head back out into the world. I punch out of my job as autism manager, I guess as much as anyone can punch out of that job, and I go back to work at my professional job and my daily job as “mom”.
And that is how those meetings go. Well, until yesterday. Yesterday, for the first time in 18 months (9 treatment reviews) I let go of my need to be in control and regimented and professional and I burst into tears. The tears came from a place so deep that I just could not find the off switch.
I apologized through my sobs. I knew that the people in this room were unprepared for me to show so much emotion. Not because it was inappropriate, because I am sure thousands of other parents come into that office and cry every day. They were unprepared because I had never done it before. They were used to me being all business.
I could see their eyes on me. I could feel their sadness for me. And, I could hear the empty silence. I knew that all four of them, women, mothers, and people who genuinely care about my son were feeling and sharing in my pain.
You see, right before I started crying I finally said something out loud that had been weighing heavy on my heart since our IEP meeting the week before. I said something that no parent should ever have to say. I looked down into my lap and told these women that the children in Grayson’s class were already deciding that Grayson was different. And because they did not understand his difference, and because it scared them sometimes, they were already backing away from Grayson. I shared with them what the IEP team shared with me: “We need to help Grayson now so that this does not impact his long-term social interactions.”
How could this be? My 4 year old and his 4 year old peers already understood enough about difference to decide that Grayson was too different to fit in. And, that is a thought that is just too heartbreaking.
So, I cried.
And when I was done crying the psychologist looked at me, as a mother and not as a professional and said this: “I know this seems sad and hard and every one of us feels your pain even though we cannot understand it the way you do. Use this. Use this experience and this information to continue spreading the word. If the world does not understand Grayson, help them. I know that you have the power to do that.”
And because she told me to…and because he needs me to…that is exactly what I am going to do. Difference and acceptance and tolerance and understanding and peace and love. Because nothing less will do.