April 1, 2016 – Ali Family Truths #1
D came up from the basement earlier today, hungry for dinner. Or rather, hangry – losing it in a way I know so well. Mood was restored after dinner was consumed, but that was when I noticed his right forefinger.
Whoa, whoa, whoa – wait a minute, I said. Let’s take care of that. And so he willingly allowed me to wash and clean the finger and bandage it. But I still haven’t figured out how it happened. I’m just glad I caught it.
D wasn’t able to tell me how he cut his finger. I’m pretty sure if I hadn’t seen it, he would’ve continued on with his evening and not made any indication that he was hurt. He also has been coughing a terrible cough all week and dealing with a runny nose – but he has yet to utter a verbal complaint or let me know if his throat is sore.
I just make my best educated guesses and treat him, like I always have. Most of the time the relationship and nonverbal language/intuitiveness we have developed work pretty well. Sometimes though, I miss things in the biggest way, wracking my soul with pressing guilt.
This is our autism. This is D’s autism. All encompassing, profound, unique, lifelong. Every day, every hour, every minute, every second. A life lived less ordinary.
This August D will be 16. And I, well I am old and only getting older. And here we are again, another April, another Autism Awareness (Action/Acceptance) month. My acceptance of D and our life as it is did not come with an epiphany-like moment, but rather it was something that always was. He is, after all, my son – my first born, the child who made me a mother. An extraordinary young man who has gone out and changed his family and the world simply by his character and authenticity.
But what is acceptance like for D? What are his thoughts, his needs, his feelings? What does he want out of life? These are questions I endlessly ponder, the answers for which I try and search for in whatever means and methods we can offer to D to help him communicate.
In the days leading up to the start pf April, I felt little motivation to embark on another 30-day post series delving into our Autism Truths. Last year I chronicled daily the truths of our life, of D’s life as best possible, knowing full well that I could never really, truly speak for D. This year I thought to myself – is there any value in doing this? Is it helpful? To whom is it helpful? If you are not touched by autism in some way, can you every truly be receptive to learning about the autism community and changing your perceptions?
Several messages in the past few days, however, make me think that it’s still worth it. This writing began nearly five years ago out of a desperation to tell a story and be silent no more. To show other families living this life that the living is real, truthful and honorable. That autistic children, teens and adults matter, and they deserve the means to live fulfilled lives as best possible.
That this is tough. And sometimes so very damn hard. But also beautiful and joyful and oh so worthwhile.
One mother wrote this to me:
It has been a tough journey, and reading your posts have really motivated me. I spent an entire year living in denial about it, not telling family and friends, not because I am ashamed, but because no one understands.
Another wrote this:
I have two children who do not have autism, and I care for my mother who has Alzheimer’s. For the longest time I couldn’t figure out how I understand and relate to your raising D so well. It’s because I face similar [things] with my mom. … Your blog helps me cope even though both of their diagnoses are completely different. The struggles to cope with the stresses of balancing my kids’ lives, my family life and the care of my mom are very similar.
And so I guess it’s still worth it to chronicle this journey, these truths – truths that are specific to our family and to D. I do not mean to speak for all of autism or for autistics. I mean to just offer a window into our life and ask you to consider this living and what your understanding of it may be. To stick with me for 30 days. To consider how we support and respect and live with people with autism and other special needs. To realize the struggles and the joys and the lessons learned along the way.
To consider the humanity that must live in us all.