Momma said...

I was talking to my mom the other day. As always, she helped me to understand something: something about CE, something about the learning process being a parent of a child with Cerebral Palsy, and something about perspective change.

My baby brother turned 18 a few weeks ago. He is an adult now by German law. I’ve know him all his life. I met him on his first day of his life, when he was battling hard to hang on there. He was so tiny and there were a lot of glass windows between us watching him, loving him. Now he is tall and lanky like my other brothers. He outgrew my mom over a year ago, who now wears high heels to support him during walking. Now, there is an ocean and nearly a whole continent between us; but I am still watching him, still loving him.

My mom has been learning how to conductively bring up my brother for over 16 years now. They live around 400k away from the German CE centre my brother has attended since he was 5 years old. He usually goes there for intensive blocks, but in between blocks it can be up to 6 months that he doesn’t get to see a conductor. However, his conductive learning never stopped: as he is encouraged to work on those skills at home.

When we talked I brought up how she mentioned before that the changes she saw in my brother from CE camps weren’t really physical changes, but more cognitive. She replied that this is true, but that she can now see how CE made a difference physically over the years. The week before she went to an orthopedic doctor because my brother complained over occasional back pain. He assured her that his spine was in great condition and that he could tell she has been working hard with him.  He also said he sees young, adults, with similar severity of CP, whose bodies are so contracted that, even with help, they have difficulties using their bodies purposefully and without pain.  Those are the times my mom gets reminded how CE has helped her to learn to not only support my brother to improve but also maintain the skills he has gained over the years at home. When he was younger it was solely about improving his skills and getting better at things. But growth, and hormonal changes really make it important to work hard mainly to maintain those. Yes, where there is CE, there is (or should be) always learning and improving, but that sometimes loses its importance when it comes to growing teenagers.

My mom talks about that conductor a lot who told her nearly ten years ago, that it is important to stick with the hard work they put in; especially when he becomes a teenager. As this is the time most families give up. It is that time that priorities change mainly because their children’s body change into an adult body, but also because the focus is more on academic achievements and what to do once they are out of school. The daily fight with different authorities and professionals simply becomes too much to handle and gets understandably avoided.   And of course other teenage troubles like hating your parents, dating, being self-conscious etc can make life even more challenging.

But it’s that time where the physical upkeep wins importance as it sets the tune for adulthood. You lose your range of movement and ability to control your limbs sufficiently when you are a teenager; it becomes a even harder battle to fight when you are an adult.

Those teenagers need activity not because they have CP but because they are human. The ”use it or loose it” rule of thumb for physical activity applies as much to them as to the rest of the teenage/young adult/human population. Exercise is supposed to be part of a healthy life-style. But what happens in reality that at this time physical activity slows way down because they become harder to handle. However, my mom also insists that she used to have more back pain when my brother was little because of the awkward bending over. Because they learned together how to support his movements, it has become easier – in a way they grew together.

They’ve had sixteen years of conductively growing together. And I think they are happily looking back on how much they learned and are happy to be able to keep going with this.

I am still watching and also learning from them.