Today, on the 2017 Disability Day of Mourning, I am thinking about how to guide G toward the path of advocating for the rights of the disabled. We are all about Autistic pride around here; there is no doubt that being autistic is a grand way to be. We cannot deny the challenges, though, and one of my gravest responsibilities is to teach G to recognize his needs and request support.
At 13, and being a sensitive guy, G is a bit young for the full story of why we mourn. To be honest, this is a tough subject to broach at any age, but we have to begin somewhere.
So we begin where we are. By stating categorically every single day that he is valued and loved. By making clear that those who claim to love someone would never harm them. By reminding him that he belongs to himself above all, that he has the final say in what happens to his body, by teaching him that we always begin with "No!", but have a right to physically defend ourselves if need be. We set a tone through our conversations when these stories make the news.
This is the hardest part of special needs parenting for me, but I know it has to be done. There will likely come a day when he wants or needs to move through the world without me, and I have to make sure he is equipped to do that. I don't have all of the answers, and sometimes I have to tell him so.
What I do have, is the conviction that he has the right to live in the world just as he is, and a desire to help him do just that.
Wednesday, March 1, 2017
Wednesday, February 1, 2017
The Rhythm of Our School Days
In the morning, when the house is still silent, I curl up on the couch with my coffee and devotional, to spend a few quiet minutes studying before I give C his wake up call.
I open the blinds at the first sign of light, because even after almost 20 years in this house, I never get tired of watching the sun climb over the mountain.
Before long, I hear voices from the street, as our neighbors usher kids to the car, calling for people to hurry, honking their horns when the stragglers are unusually stragg-ly. I remember those days, bolting awake at the sound of my alarm, rushing to get myself and C ready to head out the door. No matter how well I tried to prepare the night before, there was always something that demanded just a little more time than we seemed to have. Of all the things I miss about our old life, I don't miss that at all.
I finish my study and planning, then go to open the drapes in C's room. He gives me a one-eyed groggy smile, bids me good morning, and I let him know how much free time he has before we need to start our studies.
I fix breakfast and call C to the table, where he eats and I sip coffee in between reading from whatever book we're working through. Breakfast complete, C rinses his dishes and we head to the couch to takes turns reading aloud until we reach the end of the chapter. On particularly gloomy mornings we call on the warmth and glow from the fireplace to chase away the last chill from our toes before heading to the school room, where our books and schedule lay waiting for another day of learning.
We work through our task list, pausing as needed (but not nearly as often as we did in the early days). There is time for discussion about a movie we've seen, or want to, time for C to tell me about the artwork he plans to do once the school day is over. Some days are a hard, and we take lots of deep breaths and use positive affirmations, tapping, and encouragement to get through challenging assignments. Some days are easy and we find lots to laugh about. Every day, I am amazed at how far this young man has come, and how resilient he is. The world was not made for C, and my attempts to accommodate and adapt things for him are sometimes inadequate, but he never gives up.
This life is not easy. It's most of all not easy for C. But I'm so grateful to be the one doing life with him, so grateful that D works so hard to give us this time. Even though some days are exhausting and it feels like we'll never get another reprieve, I know we will. Some day, I'll look back at this time and wonder how in the world it went by so quickly.
I open the blinds at the first sign of light, because even after almost 20 years in this house, I never get tired of watching the sun climb over the mountain.
Before long, I hear voices from the street, as our neighbors usher kids to the car, calling for people to hurry, honking their horns when the stragglers are unusually stragg-ly. I remember those days, bolting awake at the sound of my alarm, rushing to get myself and C ready to head out the door. No matter how well I tried to prepare the night before, there was always something that demanded just a little more time than we seemed to have. Of all the things I miss about our old life, I don't miss that at all.
I finish my study and planning, then go to open the drapes in C's room. He gives me a one-eyed groggy smile, bids me good morning, and I let him know how much free time he has before we need to start our studies.
I fix breakfast and call C to the table, where he eats and I sip coffee in between reading from whatever book we're working through. Breakfast complete, C rinses his dishes and we head to the couch to takes turns reading aloud until we reach the end of the chapter. On particularly gloomy mornings we call on the warmth and glow from the fireplace to chase away the last chill from our toes before heading to the school room, where our books and schedule lay waiting for another day of learning.
We work through our task list, pausing as needed (but not nearly as often as we did in the early days). There is time for discussion about a movie we've seen, or want to, time for C to tell me about the artwork he plans to do once the school day is over. Some days are a hard, and we take lots of deep breaths and use positive affirmations, tapping, and encouragement to get through challenging assignments. Some days are easy and we find lots to laugh about. Every day, I am amazed at how far this young man has come, and how resilient he is. The world was not made for C, and my attempts to accommodate and adapt things for him are sometimes inadequate, but he never gives up.
This life is not easy. It's most of all not easy for C. But I'm so grateful to be the one doing life with him, so grateful that D works so hard to give us this time. Even though some days are exhausting and it feels like we'll never get another reprieve, I know we will. Some day, I'll look back at this time and wonder how in the world it went by so quickly.
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