Experiencing Disability

    

    I have not written anything for this blog since before February 13th when I had surgery for a hip replacement that didn't go well. In the process of inserting a prosthesis into my right femur, the femur was cracked, resulting in my inability to put weight on my right leg for six to eight weeks. If you want more details, you can read about them if you click here: The Unwanted Elephant and Let Justice Roll Down Like Water.

    I have just passed the four week mark, counting down the days (twelve) when I will get x-rays and find out whether I can begin the physical therapy that should have started a month ago. Meanwhile, I am spending most of my time on the first floor of our two-story house, using a walker to get from bed, to half bath, to table and recliner. Two weeks ago I started to go upstairs twice a week, sliding on my bottom, using a shower chair with Mark's help, to get from the top step to the landing and then into the bathroom for a sit-down shower. 

    I am learning what it is like to live with a disability. I am grateful that my disability is temporary, but still, this experience gives me a little glimpse into the life of someone who cannot walk or take care of themselves. Because I am dependent on a walker for mobility, I can't fetch things for myself. I am dependent on Mark to get me a glass of water, to prepare my meals, to put on my compression socks, and bring me the things I need with which to occupy myself. It is a humbling experience.

    Since my surgery Mark and I have enjoyed a lot of support from our family, friends, and church community. Many have brought us meals and homemade cookies, sent cards and flowers, and come to visit. It feels wonderful to be showered with so much love, care, and prayers. When this is over I hope I will remember what it's like to be helpless and remember that there are many who never recover from a disability and may be forgotten with the passage of time. I hope this experience will serve as a bridge of oneness between me and those who spend their lives in a wheelchair. 

    Yesterday Mark took me downtown for my first stroll in the wheelchair we borrowed from a friend. I hadn't expected such a bumpy ride which made me realize what it's like, not only for those in wheelchairs, but for toddlers in strollers! When we saw a woman coming toward us with her dog I held my breath until she pulled the leash closer to her body. I did not want it jumping up on my lap. She asked if I like dogs and I said, "He does," pointing back to Mark. Coming face-to-face with a dog is another thing people in wheelchairs have to beware of. I am grateful that this dog owner was courteous!

    Mark took the above photograph as he was helping me back up the stairs after our stroll. If I was permanently disabled I guess we would have a ramp and not have to use the shower chair method to get in and out of the house. For now, I am grateful to the physical therapist who taught us how to use the adjustable chair to go up and down the stairs. Yesterday was my first outing other than to a doctor's office in more than a month. People with disabilities need to get out of the house, even if it's a big ordeal to get them out. I am very grateful to my husband who also took me out for breakfast this morning and then helped me upstairs so I could take a shower and write this blog on my computer.

Neurodiversity

        

       When a child is born with a disability, building bridges of oneness is the last thing on the parents' and grandparents' minds. My grandson was two and a half when he was diagnosed with autism. I didn't know anything about autism then, but I've learned a lot over the past four years. One thing I've learned is that autism is a common disability, and having autism in the family creates understanding and connections with people we wouldn't have known otherwise. 

       Before our grandson's diagnosis, I didn't think a lot about neurodivergent people. In fact, I wasn't familiar with that term at all. Knowing and loving my grandson has opened my eyes and mind to the challenges of raising a child who does not communicate, learn, and play the way a neurotypical child does. I have struggled to find the spiritual reasons for autism, and what I've come up with is that it teaches the family how to love unconditionally. Whenever we are called upon to make sacrifices in order to care for another person, our hearts stretch and grow just a little bit more. I think that's what this is about.                                                        

       A year and a half ago my husband and I left our New York home of thirty years and moved to Wisconsin to be closer to our children and grandchildren. The main reason was to be here for our grandson, who can't be left with a childcare giver who doesn't understand his disability. While he attends an ABA clinic, there are many times that he can't go for one reason or another, and his parents have to leave work to care for him. When the Covid pandemic hit last year there was no childcare available before and after the clinic hours, and no child care for his younger sister, either, so we realized that our presence in Wisconsin was essential.                                

       Making friends in a new town is difficult in the best of circumstances, but add a pandemic that requires social distancing, and it's nearly impossible. Fortunately I made one new friend before Covid shut everything down. I met JoAnne at the gym, but we were drawn together by the commonality of my special needs grandson and her special needs daughter. Kathleen was born with a genetic micro deletion called 1q44. It is so rare it doesn't have a name or a syndrome associated with it. Some of Kathleen's behavior is similar to that of someone on the autism spectrum. Because she has trouble communicating, JoAnne became a speech pathologist. Before we were separated by social distancing JoAnne came to our house to work with my grandson one day, and she and I got together on several occasions.

                                                         JoAnne and Kathleen

Now that we are fully vaccinated, JoAnne and I are socializing again. The other day we went to a coffee shop together and I wore the T-shirt my daughter had given me for Mother's Day. The purchase was a fund-raiser for the ABA clinic. It tells people to "Embrace Autism." I have to say, while I embrace my grandson and others with autism, I can't embrace the disability itself. If I'm misunderstanding the meaning of this slogan, I'd love to hear from anyone who can explain it to me.

After we finished our coffee and muffins JoAnne and I were browsing through the gift section of the shop when a young man who obviously knew JoAnne said hello. She introduced us and I learned that he had been one of her speech clients when he was three years old. He noticed my shirt and told me that he has a disability, which JoAnne later told me is autism. I realized that by wearing that shirt I helped him to feel comfortable with me. Just acknowledging an awareness of neurodiversity and the people who struggle with it can build bridges between people from different backgrounds and forge new relationships. When I meet people with disabilities now I am much more sensitive toward them and their caregivers than I used to be. But I'm still working on it, realizing it is a lifelong process!