Things from a face-to-face board meeting after a long absence

―How should parents deal with their children who are Rett children?―

Kazutaka Matsumoto,

Director, Japan Rett Syndrome Association

On July 9, 10 people from 5 families gathered in Shizuoka Pref, and we held a face-to-face board meeting for the first time in four years, and talked about various things. Among them, there was an opinion as a “older” parent. “I want to live a long life and look after my daughter (I want to take care of her),” “Fight against aging,” “I (parents) need to be healthy,” “Longevity competition between parents and children,” etc. It was very sad.

Above all, I was stunned by the words, “We (parents) have become a problem to separate from our children.” Until now, parents have worked hard to take care of their children.

In times when public support was scarce, parents supported their children while working with their fellows. Even today, public support is not sufficient, and the role of parents as carers is important. However, from the perspective of”OyabanareKobanare”, it may be time to gradually transfer the care role (parent role) to others (comrade) other than parents and siblings. Children have the right to make comrade and enjoy life, regardless of whether they have a severe functional disability called Rett Syndrome or social ” difficulty in living. Believing in children even more than before, it may be necessary for a transformation from an “overly affectionate” parent-child relationship to “an affectionate yet relaxed” parent-child relationship, in order to expand the range (options) where the child can enjoy their own life.

Even if parents and children do not physically separate, if parents can recognize their children’s personalities and treat them as adults, even if they live together under the same roof, I think I’ve been able to do “OyabanareKobanare”. By “OyabanareKobanare”, at least by separating mentally, the children’s options for living expand, and the parents also expand their options for living. And it is precisely because they believe that parents can afford to live a happy life themselves, and as a result, their children can live a happy life as well, that the phrase “we (parents) have become a challenge to be away from our children” was uttered.     

I would like to continue thinking about this issue with you in the future. I was able to spend a very meaningful time at this board meeting, and I thank you all for it.

OyabanareKobanare : In Japanese culture, it refers to a phenomenon that combines “independence from parents” of children with intellectual disabilities and “independence from children” of parents. In English, this can be translated as “mutual independence between parents and their child with intellectual disabilities.”