Tuesday, October 31, 2017

Back To The Future:Raising A Son With Special Needs

Tonight is Halloween. My 4 children have graduated from trick or treating, as our youngest is in High School.  Finally. First year ever. Yet, Willie is back home living with us and wants to go trick or treating. Thus, I am back to my new future and will be the lucky companion to take Willie trick or treating.

Halloween is a trigger for Willie and for me. He loves dressing up, even when it is not Halloween. His costume has not come, so there is that. He will dress up tonight as a rock and roll STAR, in lieu of that costume that just won't seem to ever arrive. Willie loves candy. He loves to eat endless amounts of it. Ugh, I hate that. As I walk the streets with him tonight, I am full of shame. For what 24 year old still goes trick or treating. So I will look down as I pass neighbors and others I may know as I take my 24 year old trick or treating.  For he cannot go alone. He needs supervision. Supervision he so desperately hates and resents, yet knows is necessary.

Some have told me to embrace his joy about Halloween and lack of insight about how inappropriate it may be for an adult to trick or treat with his mom. To shed my embarrassment. Some have said you are giving him a great gift.  And I will stick with that version of my new future.

Trick or treat!

Thursday, October 19, 2017

Just Beep That Horn: Raising A Son With Special Needs

Transitioning in general is a challenge for Willie. Getting out the door when his driver arrives to go to his day program and his fitness program can be super problematic.

The complication is that at Willie's old group home, there was lots of "rushing" that Willie perceived to be bullying, and almost abusive. This morning when I knocked on his door to make sure he was getting dressed, he called out: "don't rush me." I said: "you are safe." He responded: "triggered." This is our banter back and forth to deescalate the many times during the day when Willie is triggered by seemingly innocent demands and environmental stimuli. It helps tremendously to deescalate him. His PTSD is alive and well.

So yesterday morning, at the suggestion of Willie's wonderful behavioral team, Willie's driver beeped her horn to prompt him to go to her car. It was a carefully orchestrated behind-the-scenes maneuver. Thought up by one specialist. Communicated to Willie's driver by me, so she would suggest this new approach, not big, bad, triggering mom. Texts back and forth that she may need to beep extra long and loud. And then TA-DA, magic.

Willie heard that horn, and within 2 seconds, called out to me: "better get going, see you later." His chipper voice was full of liberation and self-confidence. It was a giant coup. For months and months, we have been fighting over this very transition. And now Willie owns it, controls it, and is succeeding at it.

WOW! Recovery and healing are good. And possible.

Wednesday, October 11, 2017

Idiosyncrasies: Raising A Son With Special Needs

I prefer to view Willie's idiosyncrasies as just that, not signs of Autism, symptoms of OCD, or other such stigmatized terms. The power of the words we use when thinking about our children with special needs is worth paying attention to. I could easily scoff off all of Willie's strange habits with psychiatric labels, but I chose to think of them differently. I try to embrace them and sometimes even rejoice in these peculiarities.

Today I want to share Willie's strong interest in duct tape and electrical wires. When Willie is on his own at his day program and they go on a outing, he always comes home with duct tape. And not just any duct tape, but colorful, shiny, and patterned rolls. Willie also worries that his charger to his iPad is constantly breaking. His way to solve this problem is to wrap the charger in duct tape. I say nothing for Willie has figured out his own solution to this concern.  I say nothing as there is very little Willie can control in his daily life. I say nothing as what's wrong with obsessively wrapping wires in duct tape?
Eventually these cords get heavy, Willie decides they no longer work, and he instantly NEEDS a new one.  I buy him a new one. I hate to do so, but Willie again struggles daily with a semi-broken body and mind, and yearns to be a typical 24 year old young man. So the least I can do is to keep my mouth shut about his need to wrap his cords in duct tape month after month. And then when he requests a new cord, I owe it to Willie to comply with this very simple wish.

I chuckle out loud now when I see the duct tape remnants everywhere, spy the many extension cords he constantly buys from the thrift store, and watch myself patiently attempting to remove that tightly wrapped tape from the iPad chargers that still work. I could be angry and say something derogatory to Willie about all of these habits. Believe me I want to plenty of the time. Instead I am working on shifting my view and celebrating these idiosyncrasies. Most days....