I was helping my autistic daughter navigate some personal medical issues that she had earlier today. I helped her through the hard parts and just went about my day.
As I sit here this evening, thinking about our day, this wave of sadness and fear hits me extremely hard.
When I am no longer here?
Who will make sure these situations are dealt with in a way that respects and allows her dignity?
I have dedicated the last fifteen years of my life to caring for this beautiful girl. I have not worked outside our home, so I can be here to care for her many complicated needs.
I’m on call when the school calls to say she is struggling and just can’t make it through the day. I’m here before school, after school, on sick days, and during school breaks. It is all me. I have no help; there was and is no daycare or caregiver that could or would meet all of her needs.
I am her person in every way she needs me to be.
I walk her through sensory dysregulation and the behavioral issues that often accompany it.
I care for her medical difficulties, make all the doctor appointments, and then I advocate at those appointments.
I work on her life skills to the best of both our abilities. I read to her and work on her math skills.
I sit in on all of her home therapy sessions.
I advocate for her every single day with her school team. I analyze her goal progress and help them decide what her new goals should be.
I make the final decisions about anything medical or educational. I make the decisions about everything in her life, and the reality is that I always will.
She has siblings that love her unconditionally, but they have plans and jobs, and they will soon have families of their own to care for. They cannot put their lives on hold to be her person.
What will happen to her when she doesn’t have me to depend on?
Will she understand that I am no longer able to care for her?
Will she wonder where I am?
Where will she go?
Will she be treated with kindness and understanding?
Will they be able to read her body language and facial expressions?
Will they make sure she is clean and straighten her pants when they are crooked?
Will they read her stories and sing her favorite songs?
Will they be able to calm her down when she becomes dysregulated and anxious?
Who will love and care for her the same way that I do?
All these thoughts and questions are now just swimming through my head and bringing me to my knees.
There are no clear answers tonight as I listen to her stim away to her favorite videos while relaxing on the couch.
Tonight she is clean, safe, cared for, and loved, and for now, that will have to be enough. It’s time to wipe away all the silent tears that I cried as I pondered a million little big things after a long day of being her person.
