This morning I was thinking about the changes I've seen in Chef over the years; how it's really very amazing to consider how far he's come in his life. I was thinking about how he used to not tolerate praise and now he drinks it in like water in the desert. I remembered how hard he used to fight against getting ready for school because he just wanted to stay home with mom, and all the on-the-way-to-school events that have taken place while trying to get Chef to school over the years. Now he calmly and independently waits for his bus. I thought about how he always wanted to stay in his room if "new people" were in the house, and how bravely he has now ventured into all the "new" of high school. My mind went back to how looooong and difficult it was for Chef to learn any form of physical exercise, and how he now independently does 20 minutes of exercises every day plus uses exercises to help him find his focus or to deal with frustration. Chef isn't comfortable with loud noises, but he copes with them much better now, and no longer runs screaming into the house if there is a loud noise outside. And he is starting to occasionally discuss possible discomfort about an event beforehand. Chef used to be very clear about not wanting to have any disability or difficulty, but is now starting to appropriately communicate about and plan around his needs.
Last night there was a Halloween dance where I used to work. Chef's immediate response was that he didn't want to go because there would be too many people. I have taken Chef to these events for years, and he's even been up and smiling on the dance floor on a few occasions. At last year's Spring Social, Chef said he thought it might be too loud for him, but he agreed to come anyway and spent the evening sitting with other folks he knows (after being repeatedly encouraged by me so he isn't always just with me at a social event), up on the dance floor (after repeated encouragement from others who wanted to support Chef in participating), and volunteering with me in the drink booth. Last night he agreed to come anyway, and initially sat a bit of a distance from everything that was going on and focussed on his snack. Once everyone was finished eating, Chef asked if he could have thirds. I reminded him that chips (crisps) were a "sometimes" food and he'd already had two huge piles. Chef nodded, walked across the dance floor towards the chair where he'd been sitting, then stopped and sat down in a chair right by where people were dancing. At one point he came to me and said he didn't know what to say to a woman who was trying to communicate with him, so we talked about that a bit then I reminded him that he could dance or visit with other folks rather than just stand beside me. Chef nodded then went back to his chair across the room. He has been participating less and less at events, but when he "has" to come along he seems to still be finding ways to be ok with being there. There's been a change here; he used to come along with me to any event or outing and would participate with encouragement, then started to occasionally not get ready to leave or would do other things that would delay leaving. I noticed this about the time that I started nudging Chef to be a bit more independent when we were places where he'd frequently been. When we were going to our weekly music session regularly, for example, I started suggesting to Chef that he sit beside other folks he knew rather than sitting beside me and laying his head down on my lap, etc. Eventually, if it was a new or less familiar event and/or an event that held some sort of possible expectation for him and/or an event where I would be encouraging him to not be velcroed to me, he would act out after being at the event. Then there was a shift to Chef angrily refusing to go somewhere at the last minute. Very recently, he has started discussing concerns before events and has been open to discussing ways of coping with those concerns. It's still questionable as to how much notice to provide to Chef regarding events/outings. Two weeks in advance could mean two weeks of stressing/figuring out ways of not attending; one day or a few hours advance could mean one day or a few hours of the same stressing/figuring. There have been times when I haven't said anything until we're leaving and Chef asks where we're going. The latter has "worked" the best overall, but to me it feels disrespectful given that Chef's 15 years old. Chef says that he prefers knowing a few days ahead because he wants to know in advance, but acknowledges that it's easier for him if he doesn't know until it's time to leave.
"Where growth is greater than quandry, there is beauty."
This blog was initially set up as a means of communicating with my son's team. Since then, I've heard from other parents with similar stories. If you are living with challenges or journeying alongside someone who is, you are not alone. There are many of us. I'm a single adoptive Mom (http://richesofsimplicity.blogspot.com/) of a young man who lives with many abilities and many diagnoses. We have journeyed together through many challenges and a few adventures over the years as my son has tried to find space in this world that makes him feel more comfortable, an attempt made especially difficult when living with Attachment Disorder, PDD-NOS (Autism), Developmental Coordination Disorder, ADHD, prenatal substance exposure, etc. Some of the strongest elements used in this journey have been music, visual arts, therapeutic parenting, team-connection, boundary-setting, boundary-setting, boundary-setting, communication skills, community-building, continual lifeskills training, and elements of Theraplay. (Click here for some written resources.) On this journey, there is laughter and tears and growth and hope. The greatest of these is hope.