To G.R.- muito amor e gratidão.
The first time we ever sat down to have a conversation between the two of us about 4 years ago, G.R. looked deep into my eyes and saw what nobody else around me was picking up on- I was stressed out of my mind and internally splintering out distress signals. Very few people looked past my game face and recognized what she did. And instead of walking on, she stuck around to become a treasured friend and part of the family of my heart.
She is one of a small group of people who listened to me patiently and helped me hold it together as Tony was adding diagnoses like bracelet charms to his medical records. G.R. also helped tame the wilderness of our front yard recently. She has generously shared her son’s clothes with us when he outgrew them, and has offered other things as well, though I know she does not do these things to see them publicly recognized in a list. My heart knows them all though. And I will forever love her for her graciousness with all our little man’s struggles at a birthday party for her son a few years back. Let’s just say I left covered in pee and leave it at that for now.
And, if you will remember one of last month’s posts and the picture of that crummy couch Tony gave a makeover to…When I expressed embarrassment about it upon one of her visits shortly before he broke the legs out from under it, both her lips and her eyes said “I am here to see you- not your house.” And she always has been. She has helped draw leaves out of me when my more introverted roots wanted to dig deep and hide, and had the courage to make sure I was OK when she thought I might be loosing too much weight a couple years ago. G.R., thank you for touching my life and making it better. Eu te amo meu amiga!
Some Reading to Consider
I am in Here, by Elizabeth Bonker & Virginia Breen
I purchased this book because I love poetry, and that is what Elizabeth (a non-verbal Autistic Individual), writes. I was also curious about her story. The method of communication embraced by her family is not without controversy, with one peer reviewed study flat out panning it for a host of reasons, but in part because someone holds the keyboard or letter board up for the individual.
Though I have not seen the rapid prompt method in person, I can tell you I hold Tony’s augmented communication device when we’re out in public because if I don’t, he’ll throw it. Me holding it for him is not making his choices for him. Sometimes I verbally prompt him about things he doesn’t want to communicate about but should (greetings for example), but I am certainly not moving the device in any way that makes the choice for him.
That being the case, I am inclined to give this method the benefit of the doubt and give an ear to proponents who feel such criticisms potentially represent another form of bias against communication that isn’t verbal. I myself have encountered similar responses from individuals who think that when Tony picks a picture showing what he wants, this isn’t valid communication. I beg to differ. He knows what he wants, but sometimes it is hard for people to believe this until they see it for themselves and watch the efforts he makes to get any requested items that have been denied him. And even then, sometimes people see it as a lesser approach. As a parent of a disabled kiddo, especially one deemed low-functioning, you often have to spend a great deal of time defending their ability to understand more than what their body can do.
I also found a great deal to admire about Virginia’s thoughts on their journey, though she and I may have some different perspectives on things. For me, I am not as concerned about defeating or curing Autism- which may surprise you given the amount of time and money I spend on therapy supports. In truth, my focus is on helping my son to find a life that feels joyful, meaningful, and allows him the greatest degree of independence possible for his disorders. Some days, that alone feels like a very tall order, and I personally don’t think it requires verbal skills to get there (although we are still trying to help him gain those also because I just like to shoot for it all while I’m at it). I feel like in the end if he’s able to communicate what he wants through tech, he’ll be able to convince the people around him who matter most about what he can or can’t understand all by himself without uttering a sound.
In case you may be wondering which poems I enjoyed the most, Elizabeth’s “Timeless Waters” and “Cycle of Life” were two of them. In her poem “Bright Future,” I see the hope of every mother for their child. Sometimes there is no tree so “tough and mighty” as the tree that has been ripped at by the winds of adversity. Elizabeth has been being schooled by those winds and is still standing…that is certainly “mighty” in my opinion.
