I live well in black and white although I am trying to live in the grey. Grey is perfect. I love grey – it looks good on people and everything goes with grey. Living without black and white answers in general in life seems to be my new comfort zone. My go-to in the past was “Fine – if this is my life then just give me a f@%king moment, let me adjust and I’ll move on”. Black. And white. Maybe it was a coping mechanism when Hannah’s medical and autism ruled our life – like more than it does now. Knowing that the choices I had were zero going with the flow was the only way to go. But it was never graceful and beautiful.
When Hannah’s ABA – autism funding was cut for her at age twelve I was nothing short of devastated. ABA lit a pathway for her development and for every component of her life. The program and the staffing that accompanied it provided mass amounts of support. When it was ripped from our lives I did not know how we would carry on. How would Hannah learn?
Thankfully the school was able to carry on what was already in place in ABA program but without the supports of ABA professionals nothing new would be added (ABA-wise). At home we eventually succumbed to the fact that her years of being educated were finished and she would not be learning like she had during her ABA years. We felt she had “hit her ceiling”. I took my “f@%king moment”, grieved, pouted, mourned tantrumed … and then moved on. Black and white. Fine.
Now I knew she would learn things – I assumed a little bit here and there. But I had no expectations. For Hannah’s cognitive abilities and her level of autism ABA was the only way we saw any development. So I assumed the worst and made it right with my soul.
And it has been okay. She’s been happy and really if I admit it I enjoy not having my house second as a “Hannah incorporated business” with tutors, consultants and meetings running in and out (although those were fabulous years). And frankly if Missy is happy we’re all happy.
So on we went with Hannah out of school and in adult day programming where the focus is employment based on her abilities and respite for us. We are happy with our decision and Hannah is enjoying her life in adult day programming. Expectations from this type A- personality mom gone and learning to relax a bit.
As I have mentioned before Hannah’s verbal skills would be classified and named by me as functionally non-verbal meaning she can repeat many things and only answer yes/no questions with a maybe 30% accuracy and say short sentences that are sometimes audible and understood. They are usually things that meet her immediate needs or wants and are of very basic language.
So when the first question came from her I was stunned. Hannah was ready to go to her adult day program with jacket and back pack on, sitting on a chair with a few minutes to spare to watch a television show. She had her head oriented to the television show and her very flexible eyeballs sought me out. “Yes?” I said to her not expecting a response. “When are we going?” she asked. Stunned, my reflexes took over, “… in a few minutes. You have time to watch TV”.
This was the first time she asked a question (aside from “Where’s dad?”) and it was so natural and amazing yet not! But with my no expectations=happy life attitude I chalked it up to ‘that was cool – the end’.
A number of days later Hannah was enjoying some non-dairy yogurt (Silk brand found at Superstore) with granola on top. As she was picking through the granola and separating the ingredients she dryly said “Are there raisins in here?” Thinking she was repeating this from a Family channel show I just answered her “Yes I think there are”. Immediately she asked “Are there anymore” to which I immediately knew this was not an echolalic (parroting) phrase and a genuine question. She likes raisins!
I wish I could say that this would follow any book you have read on autism where there was a fascinating, exciting ‘recovery’ flowing with fabulous new developments and secrets into the mind of the autism person but that is not our reality. Our reality is that we take what we get and enjoy every fricken piece of appropriateness we get. The questions are still coming – maybe one or two one week then none the next.
Here’s an example of what we have been enjoying and celebrating:
We were on our way to Hannah’s cardiology appointment in Winnipeg. Byron was driving and Hannah was in the back seat. Byron was holding onto that holder thingy by the roof of the car. Hannah started to imitate him and asked “What’s this?”. I held onto mine and said “It’s for when dad is driving crazy and you hold on tight and say ‘help help!” Hannah laughed and said “I’m stuck!” Then after a few minutes more of driving she said “We’re going to Winnipeg. Where is it?” And I could tell her that we were almost there.
Then about a week later Hannah and I were driving in the car with a tablecloth folded in the back seat. Hannah asked while looking ahead, pointing to the back seat “What’s this?” The fact that we had to teach her pointing at age six in a very profound and purposeful way was not lost on me in that moment.
The last question she asked was while I was watching Grey’s Anatomy. There was a patient in the hospital and she was (spoiler alert for some) united with her son. The woman was crying tears of joy. Hannah while piling duplo unemotionally asked “Why is she crying?”. It is often misunderstood that people with autism have no feeling and no emotion. We have always felt the opposite – that Hannah has extreme emotion and feeling and shuts down rather than dealing with it the way you or I would. To explain to someone of her IQ level that she was crying because she was happy seemed a little daunting but we did anyway.
For now the silence continues and I don’t know if I’ll ever hear another question and if I don’t that all right. But I do know that we won’t be capping her capabilities quite yet and we’ll move on with cautious optimism! Look at me – living it up in grey!