It has been well over a year since I’ve written here. I’m tempted to criticize myself for that. Writing is an outlet for me. It helps me cope with stress and anxiety. And writing about my daughter has connected me with other Au-Kline Syndrome families. It has been a lifeboat.
The truth is I sat down to write many times. The words didn’t come. There were too many other words crowding my mind.The pandemic. Politics. Distance learning. Jojo’s services paused. The election. The insurrection. Family illness. Return to school. Covid surges. Being apart from family in far away places for the longest stretches in my whole life.
I don’t know what it is now. I went for a run the other day, and words poured out. I went to an IEP meeting, virtually of course, for Jojo several days before. It was wedged between work meetings during a long, busy day. It was a deeply frustrating and disappointing meeting. If I had given myself time to think about it, I would have realized I was devastated. But I didn’t. I fired up zoom for the next meeting and switched back to work. After work I probably poured a glass of wine and had dinner with my family and helped with homework and did baths and bedtime and crash landed into bed to watch Morning Show so I could get lost in someone else’s devastation.
And then, on that run, the IEP meeting bubbled up to the surface. And the words poured out. Maybe because when I’m running, it is just me. I feel the most like myself. I don’t lie to myself. I feel safe. I can think about things head on. I could face the ugliness of that meeting and take a good look at it. And here is what I wanted to say.
My daughter is
A student.
In the first grade.
In a special ed classroom.
My daughter has
Developmental delays.
Disabilities.
Special needs.
My daughter is
Beautiful.
Funny.
Spicy (like her mom).
My daughter is
A blessing.
A sister.
Struggling in a world that was not designed for her.
My daughter is
Deserving of education and care and love.
Not at fault for her differences.
Full of lessons if we just slow down and pay attention.
My daughter needs
A wheelchair.
A van with a ramp to port the wheelchair.
That parking space that is always taken by a car that does not have a handicap placard.
And no to the lady who just needs the space “for a minute”. The school office doesn’t give those out.
My daughter is
The best thing that has happened to me.
The hardest thing that has happened to me.
My daughter is just like your child, grandchild, niece, neighbor, friend.
My daughter is human.
#au-klinesyndrome
Jojo The Strong 