It has been a while. Years actually. Years, since I have written a word. I think I ran out of stories to tell about my sister. She read every word of every blog. She cried while she read them and was shocked every time with my insight and perception. Apparently, I understood more than she ever knew. I had a book made, compiling all the stories. She loved it.
While writing, thegirlz, I had my own Respite business, and was working full time caring for a young woman who was medically fragile, confined to a wheelchair and non verbal. Stupid words. Non of those terms come any where close to describing who I spent 50-60 hours a week with. Why do we need labels? Why did I need to describe the person I cared for? What difference does it make? The term caring implies the recipient is in need of assistance. Period. I cared for a living while I wrote that blog.
I cared for a living for two decades. The first for an agency and the second decade for my own company. I was good at it. I learned so much. I gave pieces of myself over those years. It is just one of those careers. Caring for the same people for long periods, becoming a constant in their lives, spending time in their homes, with their family members and pets, is a career very different from others. It nearly ate me up.
On a bus. I am the sole occupant besides the driver. My job has been explained to me. If she screams, we are to exit the bus. I am to explain to her the expectations of the bus are no screaming. If you scream, we have to walk. The bus went about its daily route. Stop after stop, the doors would open and welcome another rider on board. Each new occupant would greet me, Good morning, and find their seat. I was curious when I noted each rider to have cotton batton in their ears. It was a warm July day with no wind at all. On the final stop, she got on the bus. As she made her way down the aisle, I overheard words of encouragement from the passengers, ‘Good morning Katie. You can do this.’ and ‘we know you can do this Katie’. As I marveled in the kindness I was observing, I realized the cotton batton was a coping strategy and these passengers all knew what my job was today. None of Katie’s fellow passengers were judging her at all. They found a way to cope and were implementing a circle of support and encouragement for Katie. I was deeply touched by this act of humanity I was witnessing.
Then Katie screamed. She scared me right out of my pleasurable moment! The passengers were all bent over with their hands over their ears like a gun had been shot! Katie and I walked a few blocks before being picked up by the manager who the bus driver had notified. Katie seemed quite happy to walk and listened intently as I discussed bus protocol, behavior expectations, people’s rights. I told Katie how lucky she is to have such a supportive group on her transit each morning. Katie kept repeating, ‘yes’.
I rode that bus every morning for the next week. Katie and I never had to walk again. The cotton balls disappeared but the morning salutations and kind words never did. I learned about tolerance, acceptance and friendship that week.
It was Mother’s Day. I was at my caring job. It occurred to me, Elizabeth may want to buy her Mom a gift. When I asked, I received an overwhelming ‘Yes’ to the idea. Off we went to the Garden Centre. Elizabeth’s enthusiasm did not dissipate in the time it took us to arrive. Inside the Garden Centre, I explained to the staff member, Elizabeth would like to purchase two red carnations for her Mom. The staff member, as with everyone when they first meet Elizabeth, was absolutely charmed by her and thought the gesture was the sweetest ever made. Elizabeth waited quietly for the lady to return with her order. When the staff member returned, she had in her arms one dozen red carnations and she was headed to Elizabeth to present them to her. The staff member was proud of her generousity and was excited to see Elizabeth’s reaction…
Elizabeth refused the gift of flowers adamantly. The staff member was confused by this reaction but quickly collected her composure. I buffered the interaction as per my duty in caring. Honestly, I was just as confused by Elizabeth’s reaction. I expected her to be thrilled and giggly about it. Elizabeth wanted nothing to do with the flowers even after we returned to her home. Elizabeth went back to her regular routines but there was a quiet sense to her now.
When Elizabeth’s Mom came home, I encouraged her to give the flowers to her Mom and she did but her heart wasn’t in it. I explained the transaction to her Mom and was further puzzled by her reaction to the story. I watched while Elizabeth’s Mom, in the way only Elizabeth’s Mom perfects, sign to her daughter about her gift. Elizabeth’s mood brightened as the loving communication continued back and forth and then I heard the classic giggle only used when ‘someone’ (and that someone was me) used the wrong signs and caused a huge misunderstanding. As it turns out, I asked Elizabeth if she would like to buy her Mom a red ‘TREE” for Mother’s Day. Elizabeth was looking forward to seeing a red tree! The carnations just weren’t crazy enough for Elizabeth’s quirky sense of humour. When I apologized, Elizabeth let me know I silly I am and then, as she always does, forgave me and gave me a hug.
I learned the importance of communication, patience, empathy and forgiveness that day.
Why did you say that to Linda? You know she isn’t pregnant. Why did you keep saying ‘baby’ and touching her stomach? It was another night of deep discussion with Helen. The communication board had opened up relationships for Helen and allowed her to express herself. Helen was a gentle and intelligent person who had specific likes and dislikes. This new communication allowed Helen to broaden her likes and wishes and to teach us more about autism and why certain behaviours occurred at certain times. “I was angry with Linda and I wanted to embarrass her. When I get upset, those words come out of my mouth.” That’s interesting.
We would converse for some time everyday about nothing in particular. I learned something within each conversation. First of all, Helen had a wicked sense of humour. Helen rarely laughed on the outside but did she have laughs we knew nothing about.
The night she shared she was scared came out of the blue and out of context so I was unaware of how much pain she was in. Helen was able to make me understand she didn’t feel well, her stomach was upset. I thought Helen was afraid she might vomit. I brought towels and a pail and gave her lots of reassurance and comfort. I had no idea Helen had a twisted bowel and would end up in emergency surgery the next morning.
In bed, she was quietly self abusing her stomach trying to cope with the pain. Bed checks fooled us into believing Helen was sleeping. It is a gut wrenching experience when you realize you missed something big, perhaps not preventable but at least treatable. It broke my heart, that feeling of inadequacy – blatant failure to understand. Helen must have been screaming on the inside when she tried to explain to me there was something wrong.
I was there before she was wheeled into surgery. Helen was glad to see me and there was no need for a communication board. Helen’s stomach was distended, she was in pain and scared. I apologized for not understanding last night and promised to be here when she woke up. I explained the surgery to her, knowing the details were important to her. Helen sailed through surgery and her recovery went well as well.
I learned about communication, intuition, forgiveness and fear that week.