“More people should see the world as my daughter does”

As the parent of a child with Down’s Syndrome, you sometimes encounter prejudice and careless comments. Catharina, Louise’s mother, has experienced this.
“One common perception is that people with Down’s are so good, happy and musical. No, they’re just like everyone else. They may have a bit of attitude and they may not be mediocre at all. Both I and other parents of children with Down’s can assure you of that.”

Catharina

Photo: Matilda Hagerman

Her daughter Louise is now an adult. Catharina describes her as “stubborn, determined and with a clear idea of what she wants to do”.

“I sometimes make offers and suggestions, for example that she should come to dinner or to spend the night. More frequently than not, she answers “why?”. She has a life and the things she wants to do. She is extremely happy in the sheltered accommodation where she lives.”

What was it like to have a child with Down’s Syndrome?

“She was my first child, so I knew nothing else. Some things were different. For example, Louise only started walking when she was three and a half. But she has always been healthy and does not require nursing.”

What support did you receive?

“The 80s were a good time and we were quickly picked up and received rehabilitation from a team including a physiotherapist, a speech therapist and a counsellor. We were also contacted and offered a preschool place. A lot of things went smoothly. When Louise was living at home, people often asked if I needed a personal assistant. But I didn’t think it was necessary. However, she visited a temporary home three times a month for 72 hours at a time.”

“Nowadays, I think that people talk about adults with Down’s far too seldom. It’s more common to find contexts for parents of Down’s babies. My Down’s networks are now mainly virtual. I am a member of a few groups on Facebook: ‘FUB’ and ‘Wonderful, now adult, children with Down’s Syndrome’. We post questions there and sometimes photos of our children. It’s not a forum for moaning. It’s mostly for community.”

Everything in the public sector takes time

Although Catharina mainly had good experience of her contact with various support bodies on behalf of Louise, she is well aware that it can sometimes try your patience.

“The challenge of having a child with a disability is getting what you want. Because you want the best for your child. You have to accept that everything takes time because many different people work with your child and they can’t all work at the same time. It was not unusual for me to know more than the professionals I was in contact with, for instance the assistance case officers.”

Independent and satisfied

Since 2008, Louise has lived in sheltered accommodation in Kvarnbergsplan. Catharina finds that her contact with the staff there is relaxed and easy.

“I believe it’s important to have a good relationship with those involved with Louise. So that they respect me, and when I call and ask for something, I get help.”

Catharina’s approach is to let go and not get too involved, either in what the staff do or how Louise chooses to live her life.

“For example, it is not the end of the world if no one has cleaned and there is a little dust in the corners. That’s up to Louise herself.”

When Catharina talks about her daughter, she paints a picture of a very strong-willed, independent individual who also enjoys good quality of life.

“Yes, I think that she is satisfied with her life. She has friends who she invites home. She likes music, going to the cinema and sitting at home in her flat writing. She knows the alphabet, but can’t yet put the letters together to form proper words. Despite that, she likes to write stories. Sometimes she gets help from the staff in the daily activities to write down what she wants to say.”

What has Louise contributed to your life?  

“Greater tolerance and acceptance. Through her, I have met so many people I would not have met otherwise, several of them with disabilities, of course. I have become extremely clear and straightforward in how I express myself because that is essential with her. I would say that this straightforwardness has helped me in my work. Another great thing about Louise is that she couldn’t care less what skin colour a person has. She sees and likes only the person. I think more people should see the world like that.”

Let go

Finally, she has one piece of advice for other parents of adult disabled children:

“Let go! Let your adult child develop and be themselves. You don’t need to hold their hand when they are 20. Let your child move out. It’ll save you a lot of worry!”

Text: Emma Danielsson