To the Ones on the Outside Looking in While I Care for My Autistic Daughter
Dear Family and Friends,
I know you love us and you think you need to let your thoughts be known for how we handle our life because somehow you believe you are helping. I think there is something you should know.
When you single out how I parent my autistic daughter it makes me feel like less of a mother. It makes everything I do and fight for seem undervalued. It makes the places where I struggle and doubt myself the most fill with even more doubt and worry.
When you judge the accuracy of my child’s diagnosis it hurts. You minimize the numerous doctor appointments, massive amounts of paperwork, the struggles we went through as our concerns were ignored and our voices weren’t heard. You minimize the entire track of our diagnosis path, and you weren’t even a part of making sure my child received the proper diagnosis. You weren’t there, I was.
When you judge our screen time rules, but you don’t actually understand that this is how my child regulates herself; she chooses when she needs it and I allow her to do that. When you say that we should just take away the iPad more. You aren’t there to see the fallout. I am.
When you judge my child because the therapies aren’t helping like you think they should, or maybe the therapies are helping so much that you don’t understand why we would continue know that you aren’t there. You aren’t watching the small victories. The little victories where my heart leaps when she says “swing” or “the girl is swinging” to answer the speech pathologist. Or counter to that, when she’s out of therapy and I see the skills she’s worked so hard to gain get lost. When they slowly change, slowly disappear as we fight for more help. The right help from the right therapists. You aren’t there, but I am.
When you walk into my house and see the disheveled mess my living room is because toys are scattered everywhere. You see the sink full of dishes or baskets full of laundry and think I should do better. What you didn’t see was me at two in the morning when I was up for the sixth night this week with my child because she doesn’t sleep at night. You weren’t there, but I was.
You aren’t there as I sleep next to her, inexplicably allowing my child to yet again sleep in my bed instead of hers…my husband and I living in two separate worlds. You weren’t there when we decided co-sleeping would be best for our family, but you think it’s important to remind us why we aren’t making a good decision. You aren’t there. We are.
You aren’t there at that IEP meeting where I fight to ensure my child has everything she needs to be successful, as well as be included with her peers as much as possible. You aren’t there, but I am.
You aren’t there as I do my best to respect my child’s rigid routine. Planning each and every outing outside of the house, planning it from the minute we leave until the minute we return to ensure everyone is safe for something that for most families would be a simple grocery trip (full of anxiety for what could go wrong). You aren’t there knowing what could cause a meltdown, understanding exactly how things need to be done to prevent it…knowing what to do and how to react when the meltdown happens. You aren’t there, but I am.
You aren’t there as I try to balance all the demands of motherhood with the added demands of raising a child with a disability. You aren’t there while I walk through this so often feeling alone in this journey, doubting my ability to keep on going, and feeling judged by so many who are outside looking in. You aren’t there, but I am.
You aren’t there as I try to sort through what our next step is, plan ahead for what our next obstacle will be before it hits, plan what her future will be. What her diagnosis means for her life and the future. The questions I ask myself in darkness that I wouldn’t dare say aloud. The tears fall as my fears and worries grow from the unknowns of the weeks and months to come. You aren’t there. I am.
So to our family and friends I want you to know we love you. We desire your support because life is hard enough. I hope you will always ask questions. I hope you are willing to listen to me and understand the things I have learned from this journey with my autistic child. Maybe even ask if we are doing OK, or better yet is there anything you can do to help.
Please remember you aren’t here walking in my shoes taking on the responsibility of my life, or what it means to care for my autistic daughter. I am. I’m the one who is there through it all. Remember this when you speak about me, our family, and our children. Remember that you aren’t there with my family each day. I am.
A version of this story originally appeared on seasonsofautism.home.blog.