My pride in Constance’s hard-fought verbal speech was brazen. The only thing I did more than brag about her learning to talk was practice it with her. My professional biography at work had only one personal sentence in it: “Rachelle’s proudest accomplishment is helping her daughter overcome epilepsy and autism to learn to speak.”
Now that Constance has passed, I wish that her expressive language had been sophisticated enough to provide us with some warning about her malignant brain tumor. If she had been experiencing any warning signs, she hadn’t been able to tell us so.
The day before Constance died, she had a glowing report home filled with lots of good news about how she did. A big part of her day was spent working on verbal language skills. Perhaps, if I’d done more for her sooner, we could have treated the cancerous tumor and she’d still be alive.
There is no doubt that if Constance had the full autism therapy available to her from the moment she was initially diagnosed, she would have had significantly superior expressive language. That is a well-researched fact. As a result, I feel an incredible amount of guilt that I didn’t make more money or lived somewhere that had fully mandated autism coverage starting from her initial diagnosis. The slapped-together program of therapy via two insurance policies and whatever I could learn taking classes online at night wasn’t adequate. She did receive full-time therapy from professionals once the Affordable Care Act (“Obamacare”) passed but, by that point, she was significantly behind her typically developing peers.
Whatever I did to help Constance speak, it wasn’t enough. When she passed Constance could sing kids songs, ask for what she wanted, identify thousands of items, answer personal safety questions, recite vast sections of PBS Kids’ television shows, and introduce herself and her family.
She couldn’t hold a typical conversation or speak when there were auditory or visual distractions in her environment. I’ve never had a another child, but I imagine that her expressive language was closer to typically developing a three-year-old.
If she was experiencing them, she did not know how to say she was having vertigo or blurred vision. The other possible signs of a brain tumor are all things she would generally experience as part of her epilepsy diagnosis: difficulty speaking, seizures, headaches, muscle aches, and sleepiness. If she had vertigo or blurred vision she could have told us so. It is the ultimate failure. She’s gone.