A happy new year!
I wish you all the best in 2023 year.
I am writing this email in the hope that I can be of some help to Rett’s mother and father who are raising little Princess.
Our daughter, who will be 39 years old in 2023, has been in a wheelchair since she was in her first year of high school, and has been in a wheelchair except for going to the toilet and bath. Her scoliosis was getting worse year by year, but we decided that she would not progress any further due to her age, so we did not have surgery for her.
I used to live mainly at outpatient facilities, but when a new facility was opened in my area, I attended an information session and applied for admission. When the facility opened, three years had passed since the briefing session, and was it okay to let my quiet daughter enter? There were also changes in my state of mind (parents who could not leave their children), and after repeated interviews with government offices and admission facilities, I made the decision to enter. What supported my decision was the very smooth cooperation between the Welfare Division, outpatient facilities, residential facilities, and doctors.
About two years have passed since she entered. It’s also a corona disaster, and the rhythm is that we meet once a week for 30 minutes and go home every other week on Saturdays and Sundays.
After entering the facility, anxiety and expectations were mixed in various situations. (I still do)
The biggest merit is the improvement of the constitution of my daughter who was diabetic.
She was able to reduce her weight from 55 kg to 41 kg in about 1.5 years, and thanks to her, she recovered to normal weight,
She is taking no medication for her diabetes. This is a diet therapy led by a nutritionist, and I am grateful for the cooperation of her supporters and visiting doctors. In her household, she was forced to eat what she liked, and she feels that she could not have dealt with it that way. She is currently undergoing diet therapy in cooperation with a nutritionist. (I think it was hard for her, but…)
The disadvantage is that there are few people with experience in setting up the new facility, and many deficiencies stand out. There is a lot of turnover of people, and I wonder if they understand each person’s disability and respond accordingly. Anxiety continues.
Last year, we established the “Parent’s Association”, and while confirming the issues and problems one by one, we are working on improvements while involving the Welfare Division. What should this meeting do to protect my child, but what should I do to make it a better facility in 10 years? We are having a discussion while being conscious.
What I have learned over the past two years is that entering a facility requires a close relationship (collaboration) with facilities, government offices, parents, and doctors.
If I have a chance, I hope to report it again.