Last night after supper, Chef agreed that he needed to get his laundry done so he didn't have to worry about it the rest of the weekend, and said he would ask his sister for permission to go into the basement (because she is home and he has to walk through her room to get to the laundry room) as soon as she was finished with what she was doing. I told him that in the meantime I needed to chat with him. Our neighbour had told me that the last time Chef was at her place he was loudly and repeatedly passing wind and laughing. I reminded Chef that that isn't ok in our home and certainly not ok to do in the neighbours' home either. I told him he could go up to his room to think about that while waiting for his sister. I called him about three minutes later. No response. I called him again a couple of minutes later. Nothing. His sister finished what she was doing. After chatting with her a bit, I quickly ran an errand. I glanced up at Chef's window from outside and noticed his light was off. When I got home and peeked into Chef's room, he was sound asleep. I'd planned to talk with him about the weekend but sure wasn't about to wake him up to do so.
The weekend is a music and culture weekend event. Chef has previously attended, though has always participated very passively. One time, he did agree to attend a workshop on his own while I attended one (he has known most of the musicians for quite a few years, so he feels fairly comfortable around most of them). He was the only one in his workshop, so he had an hour of individual music instruction. That was awesome! With me being a musician, Chef has had much exposure to the music community, has attended many group performances, and has performed a few times with our group as well (including one time when he played part of a tune as a solo at a public indoor market and one time when he was even on stage with us at the Concert Hall). And though he's chosen to no longer play any instruments for the time being, he definitely still benefits from being at events. However, given the way things were around camping, and the cultural event in August, and him (suddenly not!) attending the music retreat in July, and the fact that Chef has often said to our neighbour, "I didn't want to go anyway" regarding music events, I chose to do this weekend on my own. Sometimes I feel like 24/7 staff whose only time off is when Chef is asleep or at school or with a respite provider. So even with recognizing all the social benefits and feel-goods this event may have provided for Chef - sometimes, I just need a break.
This morning, Chef independently started his day again with 20 minutes of exercising. Awesome! This was followed by much rushing-around-but-not-really-doing-anything. As of this morning, Chef has now agreed that he will go back to eating breakfasts that I make, so we will re-start that next week. I'm glad he has come to the point of recognizing that benefit.
Unfortunately, Chef was out and waiting for the bus before there was a pause for me to talk with him about the weekend (for those of you unfamiliar with Chef's challenges, there have been many times when I've started preparing Chef for something different a few days or more before the event, only to have Chef be all over the map for the entire time leading up to the event - it's always tricky trying to find that balance). When I told him I'd be going away and that he'd be at the neighbour's - he cried! This completely caught me off-guard. When I told him I was going for a music weekend (thinking he'd say he didn't want to go anyway), he continued to cry and said that he wanted to come. I was stunned. There wasn't much time before the bus. I asked if he'd put in his laundry so he had free time on the weekend, and regretted asking that question as soon as it was out of my mouth - as though he were missing the weekend away with me because he didn't do his laundry. I hugged him and told him there would be other music weekends together and that I hoped he'd have a great weekend. He dried his face and walked to the bus.
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.