■ Introduction
After receiving a talk from Mr. Tanaka of the Japan Rett Syndrome Association about Princess Rett’s admission to an institution, I decided to introduce my daughter’s case
Parents with a child who has Rett syndrome may need to consider the following things.
(1) In the onset stage, the biggest challenge is to find the identity of the disease and the treatment
(2) After knowing the name of the disease, I searched for a special needs school that was more likely to be in conflict with Princess Rett.
(3) When graduation from school approaches, look for a day care facility to maintain contact with society
(4) When you start going to a facility, you will be looking for a final home when your parents are declining.
(5) The life of Princess Rett after being orphaned (including adult guardianship)
This time, I would like to introduce the search for our “final home”.
The number of facilities where Princess Rett is admitted is small, and unlike facilities where elderly people are admitted, the period of admission is long, so it is difficult to find vacancies.
Depending on the area where you live, the situation of the facility may be different.
(1) Arrangement of conditions at an early stage
(2) Commencement of candidate research at an early stage
(3) Specific actions toward admission
(4) Parents’ determination to send their children to institutions
I think it is necessary.
For this reason, we recommend that you sort out your conditions as soon as possible and start looking for facilities.
■ Until the decision to enter the facility
In my family’s case, we started thinking about our final home from the time we graduated from a special needs school and started going to a day care facility.
The conditions are as follows:
(1) Within 1~2 hours by car from our home (required)
(2) Able to provide medical care (if possible)
(3) Where an adult guardian is not required for the contract (preferably)
I was thinking.
The reason for this condition is as follows:
(1) It is easy to arrange visits and switch out seasonal clothing.
(2) Since there is an epileptic seizure
Since there are epileptic seizures, it is preferable to have medication treatment and the ability to respond when seizures occur. If there is no affiliated medical facility, separate visits for medication will be necessary.
(3) Under the current system→, there is a high probability that the parent
It comes to.
Fortunately, the hospital where my daughter had been taking care of her for rehabilitation (physical therapy, occupational therapy) since she was in school was a hospital that was a “medical facility for children with disabilities and a recuperation and long-term care facility with a medical institution (hospital) attached to it.”
Naturally, at the time of consideration, there were no vacancies in the facility, and it seemed that there would be no vacancies for the time being, and at that time, there were about 10 applicants in front of us.
Immediately after graduating from high school, I applied for a short stay at this facility every month, and if I was selected, I continued to stay for one night. (2~4 times/year)
When I was around 25 years old, I clearly communicated my intention to enter the facility, and they said that in order to enter the facility, it was necessary to accumulate a track record of short-term stays, so I began to do short-term stays of 2 nights and 3 days 1~2 times a year.
We were informed that short-term stays of 2 weeks in 2022 and 3 weeks in 2023 were available, and we have built up a track record.
Now that I think about it, the facility may have been checking my suitability for admission.
At the same time, from around 2022, I asked the care manager to let me know if there was any information about the opening of a new facility, and I went to the place where it was opened, and I started looking for options other than my first choice facility.
(Care manager equivalent: A business operator who does not have enough care management and submits a plan for a day care or helper to the government office on behalf of the company)
In September 2023, peritonitis was discovered, and I was hospitalized for about 3 weeks to deal with inflammation with antibiotics, and in January, I completed surgery to remove the cecum, and I was relieved to be hot, but in February, I suddenly received a call from my first choice facility saying that I would be able to enter the facility from April, but that I would be able to answer within a week if I was willing to admit it.
I thought that if I missed this opportunity, I would not have a chance, so I decided to join the institute immediately.
Before the COVID-19virus pandemic began in earnest in February 2020, my wife was unable to move for about two months due to back pain caused by a hernia, and after that, she needed continuous treatment with chiropractic, and her ability to care for her eldest daughter was reaching its limit.
In addition, the reason why our daughter had a high fever almost every year for many years was that I had peritonitis or there was a possibility of inflammation of the kidneys due to urinary reflux,
■ From the decision to enter the facility
For a month after I decided to join the center, I made memories such as traveling, and when I told him about it, he replied that he understood, but before he fell asleep, he seemed to show a big smile and say that he would do it properly and that he would stay with me again.
When I entered the facility, I compiled a document about how I wanted the people at the facility to take care of me.
When I started preparing materials, I was relieved by the behavior of my parents who tried to tell me about myself, and then I joined the facility.
The materials I created were compiled in a binder at the time of admission and handed over to the facility staff for future care.
■ After admission
For the first month, I applied for a sleepover every weekend and took him home, but when I entered Golden Week, there was a COVID-19 patient in the facility.
I decided that it would be better to have a sleepover for about a week once a month than every weekend, so now I go to visit every weekend and have a sleepover somewhere in the month for about a week.
Since COVID-19 is still on alert, the facility is making a decision every Thursday afternoon to see if it is possible to visit or stay overnight, taking into account the COVID-19 infection situation.
If COVID-19 occurs in the facility, visitation and overnight stays will be prohibited for 10 days.
She seems to have gotten used to the facility, but she still seems to be lonely, so I tell her mother a voice reading a picture book and telling stories about going out with her into a switch that plays the sound called a Big Mac, and I give it to the facility every week.
Just like her parents, I feel that my daughter is lonely too, but she behaves bravely in front of them.
※explanation of terms
adult guardian
Japan’s adult guardianship system is a legal framework designed to protect and support adults who are unable to make decisions on their own due to cognitive impairments, intellectual disabilities, or serious mental health issues
In Japan, the system involves a court-appointed guardian who assists or represents the adult in need (called a “ward”). Guardians can make decisions on the ward’s behalf in areas such as managing assets, handling contracts, paying bills, and making medical and living arrangements.
