Admission Rett-chan to a group home

Tamaki Sakurai (23 years old) Mizuki (23 years old) written by Sae Sakurai of their mother ,Lives in Suginami Ward, Tokyo

Our twin princesses, Tamaki and Mizuki, were born on February 5, 1999  and are 23 years old this year. They were diagnosed with Rett’s syndrome when they were 3 years old after undergoing genetic testing at the Department of Pediatric Neurology at the National Psychiatry and Neurological Medical Research Center Hospital (then National Psychiatry and Neurology Center Musashi Hospital) in Kodaira-city, Tokyo.This hospital have always been a special home one. 

When Tamaki and Mizuki reached adulthood when they were 20 years old, I felt uneasy that I, the mother, would take care of them for the rest of my life. I’ve started thinking about moving in. Around that time, I heard that a new group home was being built in Musashino City, Tokyo, which was close to my home. The coronavirus pandemic started around the same time as when I applied for the group home, and the scheduled interviews were not going well.

 I heard later that there were nearly 10 times more applications than the capacity. Once you have decided to move in, you can choose the wallpaper, curtain color, floor material, etc. for the room. It was a very busy day, such as purchasing and transportation. There are two times when it is for two people, but I also have a younger brother and a younger sister, and the preparation period while taking care of four children was quite hectic. 

Due to the influence of the corona virus, the move-in time was delayed by about 3 months from the original schedule, but I was able to move in safely from April 2021. 

I was the first one to move in, so for the first two months, the apartment was reserved for two people. Regarding my life after moving in, I go to nursing homes during the day on weekdays, go out with helpers on weekends, and sometimes come back home. Also, every time I go to a regular hospital such as a dentist, I pick them up by car and accompany them. In the past, we used to go to the hospital because we were taking medicine for epilepsy treatment, but now both of us are completely cured and we are not taking any medicine, so the only regular visits are to the dentist. 

And because of the corona crisis, if you suddenly have a fever, you have to go home and wait until you have a medical examination and the PCR test is negative. 

Once, Mizuki had a fever and became a positive test, and although the fever subsided the day after the fever, she had to recuperate at home for 10 days. was really poor. In addition, I was inevitably treated as a person who had close contact with Mizuki, who had been taking care of me every day. 

I enjoyed getting rid of it and redoing it. About a year has passed since the two of us moved into the group home, and our life has changed completely, but the rush is still the same as before. 

And there are still many problems in the lives of the two of them, and there are a lot of things to think about, decide, and choose. However, it is an experience that can only be achieved by becoming a parent of two people, and it will eventually become an asset and a treasure. Well, more than that, I think it’s enough if the children are happy and having fun.

*group home

A house where people with intellectual disabilities, people with mental disabilities, and elderly people with dementia live in groups with the support of specialized staff. 

Since dementia may progress faster in hospitals, where life tends to be monotonous, this nursing care service was created to provide life that is closer to real life and home-like care. Usually 5 to 9 elderly people live together with the help of a helper.