We made the trek to MUSC yesterday.
Got Jim up at 6:00am and started off on the two hour journey to Charleston. We turned on the radio, set the blue tooth to shuffle and Willie Nelson came through the speakers singing “Crazy”, followed by “On the Road Again.” Honestly sometimes I feel like someone is watching us.
When my husband and I went to bed the night before, we were full of anxiety over what the next day was going to bring…especially with a car ride totaling 4 hours round trip, plus an appointment with a new doctor at a new hospital. We had made a late night trip to target to buy lots of edible reinforcements for Jim and had all of his favorite toys, movies and several changes of clothes packed. We find one can never be too prepared or organized when it comes to Jim. All of that preparation and Jim could not have had a better day. Sometimes I wonder if he just likes to keep us on our toes.
This is another lesson I have recently had to learn. It’s good to be pro-active and prepared – but I have this ability to tell myself how a situation is going to play out. It’s amazing sometimes the stories we can tell ourselves. Even if past experiences have led me to think this way about a specific situation, I need to treat each experience as a new one and avoid automatically assuming it will turn out a certain way. The reality is I don’t know how it will turn out, and as James showed me yesterday all that anxiety was for naught. I’m clearly a work in progress !
Jim could not have been better in the car, which is unusual and another example of the progress he is making. There have been times when a 10 minute car ride was practically impossible without him nearly kicking the windows out of our Jeep. There were days when I couldn’t make a left hand turn off my street because his behavior was too dangerous to continue on to our destination, and so I would have to throw the car in reverse and back up down the street and pull back into my driveway. Then I would have to bring Jim kicking and screaming into the house and call school and tell them we couldn’t get him there that day. We still have days where the car rides don’t go so well, but they are far better.
We often get asked, “Where does Jim go to school?” Which is then usually followed up with a puzzled look when we say, “He doesn’t go to a school, he has a home and community-based program.” We are trying to teach Jim with as many opportunities as possible each day to learn to function in his home with his family and in his community.
Part of the program that we have created for Jim includes outings 7 days a week. This not only allows him to practice behaving appropriately in a car multiple times a day, but also provides teaching opportunities for his therapists to work on functioning and participating in his community. These trips include going out to lunch, paying for food with a debit card (currently handing the card to the cashier), using community restrooms (many people don’t realize how different each bathroom can be and for a child that has trouble generalizing this can be difficult) doing some programs/work at the Autism Inc. Center, practicing going into grocery stores, clothing stores, target etc.
We arrived at the hospital and checked-in. Upon registering we were told by this lovely lady with a huge smile on her face that we would be there for approximately 3 hours. I almost hit the floor. I’m sure my expression was priceless. My mind immediately fast forwarded to meltdowns and screaming and falling to the floor… but none of that happened while we were there.
We first checked vitals and then waited to meet with the developmental pediatrician. While we were waiting we were asked to participate in a study concerning individuals with autism and elopement (that’s another unbelievable story that I’ll write about on another day – but I can tell you it involves an barbecue, a break-in, alligators and waffles). We were asked to fill out a survey and one of the questions was:
Please check the following: What is your child’s race?
My husband replied, “Fast!”…
These are the moments that help me get through the difficult doctors appointments, and the horrible tantrums and the disappointments and heartaches. A single word response like that. Jeremy always knows when I need his sense of humor – when I just need to laugh and breathe.
The entire staff could not have been more compassionate and caring and Jim could not have behaved any better. We discussed future plans and medication management and then came the question that had been pressing in my mind for days….
Over the past few months we have been noticing that Jim has started making strange twisting motions with his head/face, body and hands. It started off slowly maybe once every few days and then became more frequent. Currently he is making these movements daily and multiple times within an hour. We went through a scale with the doctor and answered a number of questions regarding the movements. The doctor explained that these movements are a result of the prolonged use of some of his medications. She called the movements dyskinesia.
I immediately started sobbing. I told the two doctors in the room that my heart is broken over all of the things my son has to endure and how hard his life is. I went on to explain that although James has autism and a host of other issues and diagnoses, he has always looked typical to me. When I look at him next to my other children, physically he looks like they do – minus the flapping, and not making a ton of eye contact. But now when his body seems to be making these involuntary movements and his face is getting all distorted while it’s happening I am reminded each time how profoundly disabled he is. And it’s like opening a wound over and over again.
Bottom line – he can’t come off of these medications right now.
We tried to eliminate some of them almost a year ago and the results were disastrous. Jim had become such a danger to himself and others that he had to spend a week and a half in a psychiatric facility to get his meds stabilized again.
So at this point it’s another thing I have to accept. I don’t have to like it… I just have to accept it. Funny… I went through most of my life thinking the two things were synonymous. Only in the last 2 years did I learn that’s not the case.
After the appointment was over and we returned home, I tried to focus on having gratitude for how well the day had gone, rather than on the news I had been given. And when the self-injury started at 2:48pm and didn’t end until 11:18pm, I still felt gratitude for the progress and the accomplishments Jim has made, for the therapists who work so hard with him, for parents that are always there in a clutch to help and offer support, for the doctors and staff at MUSC for being so wonderful and for the husband who always knows what I need.