Parenting a child when you have OI

Claudia Finis is a member of the German OI-association DOIG and a volunteer for the OIFE. With the input from two other parents (Janina and Sven) who have OI themselves, she wrote an article about parenting a child when you have OI. The article was first published in the German magazine “Durchbruch” (Breakthrough). It has been translated by the OIFE Magazine editors.

I got an inquiry if I could write something about parenting with OI of a child with OI. Gladly, I thought. However, I am not the measure of all things. So I asked two other OI-affected parents if they could talk to me about this topic and if I could translate this into an article. Both immediately agreed. Sven has a son affected by OI and Janina has a daughter affected by OI, while I was the only one in this group to have two children, a son without and a daughter with OI. Many topics came up in our conversation. Some of our thoughts and experiences are given below.

We chose to have a child or children. We do not believe that a happy life is only possible without disability. It takes a lot for a happy life. However, the absence of a disability is not absolutely necessary. We probably all know people who seem to have so much, and are still unhappy. For Janina, it means looking at everyday life, with or without a disability, in a way that includes all possibilities. You will always find ways and approaches that others are trying to find in vain, or that they may not yet be ready for.

A basic assumption of some people is, according to my feeling, that all disabled people always suffer, never rejoice, and if they do it’s short-lived and half-heartedly, because then the suffering immediately strikes again unavoidingly. That’s not the case. Really! In fact, there are people who feel that way. But they exist among the disabled and not disabled. Really!

How did it all begin?

For all of us, the decision to have a child was a conscious one. The notification that our child has OI, however, occurred differently for everyone. While Sven’s baby was diagnosed with a fracture during a prenatal examination, I had a strange finding (I thought at the time) that did not match my own OI as a child. With Janina it was completely different, because she thought her baby would not be affected for months until she found out after an atypical fracture and a genetic diagnosis.

Therefore, Sven was the only one in our group who had this one moment of recognition. He reported that he needed some time to digest this back then. But he is sure that the shock was different for him than for non-disabled parents. Perhaps one of the first thoughts of parents without disabilities is: “How should my child with brittle bones lead an independent life?”

Our own experience of a successful life with a disability may help here. For me and Janina it was more like sliding into certainty.

What changes?

Regardless of a disability, every child is a surprise package. The first child in particular, changes life tremendously. This disability-related “more” adds not as much weight as it does for non-disabled parents. Many things that non-disabled parents have to learn, are already a natural part of our lives. Submit applications, take accessible detours, visit experts and therapists…. all of this is familiar to us. It is just nothing special. We are now also doing this for and with our child, just as non-disabled parents do their things. Things that were already part of their lives before, they now do this with their non-disabled children as well.

What people without disabilities ask about!

All three of us were surprised to hear that we were asked independently of one another how we, as disabled parents, wanted to manage to care for the children, since we couldn’t run after them. I was very surprised at this. For me it means that people who ask like this, always raise their children with the help of physical superiority and power. But this was never my pedagogical approach.

Janina (photo), sitting in an electric wheelchair, went to the zoo alone with her daughter when she was little. And her daughter, who was very mildly affected by OI, did not run away from her. At that time, I was also alone on excursions with my 2-3 year old son, who was not affected, even on very rough terrain. I wasn’t afraid he might run away from me, and neither is he. I have often been on the road with both children or just one of the two without any other, non-disabled adult. I never had this problem with any of my children.

According to my parenting style, I never intended to run after my child. And this is regardless of my disability. I often get the impression that many of the supposed problems that non-disabled people see for disabled parents only exist because of their rigid, not always meaningful ideas.

Do you need special aids?

Janina and I both had something built according to our needs. We used creativity to handle things differently than usual when it was necessary. Janina had the first baby bed converted according to her needs. I myself had my father-in-law build me a board attachment for the bathtub for changing. The things that are needed in this situation can often not be found in the catalogue of equipment for disabled. In this case the help of proud, technically gifted grandparents is very welcome.

How do I teach masculinity?

As the only father in our group, Sven was and is constantly confronted with the question of male role models. How can you teach a son to be a man if you can’t do all the body-related things that seem so important to manhood? Sven (photo) himself also has an affected son, but sees no problem for himself. In some points he fulfils the classic male role requirements, in others not. He is quite relaxed about this. Perhaps with this attitude he is fulfilling contemporary demands on men more naturally that other men could use as an example. Just a thought from my perspective…

We are role models

Every day we show our children how to lead a fulfilled, happy, special, sad, exhausting, funny, normal … life with a disability. We demonstrate how to deal with difficulties, whether they are related to OI or not. Just like everyone else, we are mostly successful in doing this. And just like for everyone else, it sometimes doesn’t work out so well. Then we talk to our children, straighten the crown and continue walking or rolling…

Janina also emphasized the equal partnership based on eye level, whether with or without a disability, as a very important basis for children. This especially for children with a disability, to be the best possible role model and to strengthen them at all times on their way into life.

That leads to the last point:

We are not alone!

Our partners have to be mentioned. None of us did get our children alone, cared for or raised them alone. This influenced our decision to have children. Our three families are lived inclusion!

Written by Claudia Finis, DOIG (German OI-association)

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