What Willi taught me

Birte Müller

After my husband and I had our son, Willi, slightly less than ten years ago, a number of couples from our close-knit group of friends also decided that they wanted a life with a child. I was surprised about that because I had been worried that the fact that our baby was born both seriously ill and with a mental disability would rather scare other couples away from taking this step. A few years later, a friend of mine explained to me that this had, in actual fact, provided her and her partner with the courage to take this step because they had seen that even in the “worst case scenario” it was still possible to be happy and love your child, whatever the external conditions may be. I wasn’t all too thrilled that she had referred to Willi as the “worst case scenario”, but I knew what she wanted to say. On the whole, I don’t know whether or not our friends had made use of prenatal screening during their pregnancies. I didn’t dare to ask.

I have the feeling that a sort of trend has emerged in society where parents lend themselves to the illusion that children are “projects”, and that with precise planning everything will proceed completely without a hitch. Don’t even ask how often pregnant women are asked if they know “what it is”. The fact that almost all parents today let themselves be told whether they will have a boy or a girl is solely due to them being offered the opportunity. And even though almost all parents today know and are able to answer “what it is”, the phrase “but the important this is that they’re healthy” will without a doubt be added in the discussion.

I don’t like this phrase. I know that a large number of people actually mean something completely different when they say this. What they basically mean is, “but the important thing is that they’re not disabled”. Sometimes it can be quite painful to be the person to have suffered the event about which other parents have such a great level of anxiety, namely giving birth to a child born neither healthy nor without disability. However, I’m not complaining about my life and my child but rather with my inability to convey the fact that I don’t see these events as some kind of disaster or misfortune that have befallen my family. The fact that I have a disabled child has certainly led to some limitations in the way I can lead my daily life, but it has never caused me to question my child’s existence.

Children exist for their own sake

Why then do we have children? Certainly not so that they can simply meet our expectations for them, or so that we can in some way profit from them. Children aren’t just there for us to coo over, about how sweet and cute they are, or to be exceedingly good in a chosen field, or to someday take over the family business. They exist simply for their own sake. Therefore the idea that I should be putting demands and expectations on my children when it comes to things such as how fast they are developing, how talented they are, or their level of attainment in school seems like a completely foreign concept to me.

Through observing the social environment of my daughter, who doesn’t have a disability, I have started to notice the tendency of some parents to push their children to their limits, and already at nursery level to start preparing them for their future working life. They appear to do all of this with the best of intentions! This isn’t a sign that they love their children any less, and, of course they’re certain that it’s good for their children when they teach them that, even though they are only in nursery, the best way to achieve the results they want is to ride roughshod over others; or when they get them a smart phone when they’re in primary school so that they don’t fall behind in terms of their “technical connection”. I look on in surprise at the mothers who have mountains of educational toys and parenting guides and handbooks at home, who either tick off each step in the development tables in these guides with pride, or eye them with worry, depending on whether their children have achieved these goals at either above or below average age. I don’t like how they pathologise their so wonderfully normal children and continually place expectations on them. They drag them to every conceivable form of early years support group and can talk about almost nothing else except what their child has, or in some cases hasn’t, achieved.

I feel sorry for these mothers. I see myself in them. I see how I used to try compensate for Willi’s “deficiencies” with a 24 hour development and activity programme. I see how I wanted to make sure that he would be the best among all disabled children. I see how I thought that this would lead to him having the best possible opportunities in life when he had grown up. I see how, in doing this, I almost took away Willi’s one and only chance at having a happy childhood!

A continuously stressed and worried mother has never been good for a child. And in any case, Willi had too strong a personality to let himself be pushed into simply conforming with my expectations of him.

Today I realise that it would probably have benefitted my children a whole lot more if I had parked them in front of the TV for a while to take a short, half-hour nap beside them on the sofa more often, and as a result afterwards be able to engage with them with greater joy and less therapeutic intent. It was only complete and utter exhaustion that forced me to let all of this go. Even now, I’m still ready to learn from Willi, to live in the here and now, and to accept him and his sister exactly as they are.

Parenting guides belong in the bin

In my opinion all parenting guides and manuals should be thrown in the bin. All they do is manipulate our gut feelings and play on our sense of duty. And after studying all manner of books on the subject of language and early years development, I have come to the conclusion that casual play with children also results in them obtaining all of the therapeutically valuable benefits in any case. And if you have the opportunity to take your child outside and into nature it is possible to find a natural replacement for almost any form of toy, at the very least for all those educational toys.

I try to push my children only in areas where I feel a very strong level of psychological stress coming from either me or my children. For Willi, this is communication. He is severely affected by the fact that he cannot speak. As a result, I am always urging him to learn new sign language signs and to make use of his voice computer, even when he signals to me that he doesn’t want to.

I also work with our daughter Olivia on her school work, since she seemed to be having difficulties at the end of her first school year. Although my gut feeling tells me – no matter what her school marks say – that she is a wonderful and clever child, if she suffers from being a failure by school standards we sadly have to face up to the problem. I don’t have a bad conscience about the fact that my children don’t have a fully planned out schedule of after-school activities, with the exception of going to gymnastics once a week. In fact, quite the opposite.

We have so much time at our disposal that Olivia can make as many arrangements as she likes. That is the luxury with which my children are growing up! That is so good for us!

If I hadn’t had Willi as my own form of personal therapy I would most certainly have been one of those overly ambitious mothers, making sure that I had always put together the optimal, fully planned out weekly schedule of musical activities and sports for my children. And we most certainly wouldn’t have made it through the Advent period without at least six different Christmas stories and baking at least ten different types of lavish, home-made biscuits.

We are completely free of all this stress. Because my child isn’t taking part in this “competition”, I have been saved from having to do everything to “too good” a standard.

The luxury of the unplanned

I have also got Willi to thank, that at least my second child has received a large amount of breathing space and proper responsibility in which she can develop independently. At the age of seven Olivia can already bake cakes on her own, and that’s solely down to the fact that at most times I can’t be standing beside her offering supervision. I am becoming increasingly convinced of the fact that “just let them do it” is one of the best principles to follow when raising children. Being honest, even though I sometimes find it difficult and I often have a lot to clean in the evening, these are the moments when I fully lose any trace of a bad conscience that I am not able to be, or even want to be, continually there for my children.

As it’s usually the so-called “helicopter mothers” who want to become the class parents’ representative, even in nursery, and who loudly call for constant protection and support for their children, I sometimes had the impression that all the other parents were bringing the children to school and then picking them up every day, that they were constantly engaging in discussions with one teacher after the other, that they were always standing at the side of the playground every single time their children were playing, and that they were constantly ensuring that their children’s shoes never ever got even the slightest bit wet, or that their hats never came off.

I thought, because the articles in the parenting magazines that fell into my hands at the doctor’s dealt with an endless series of problems which had never seemed a problem to me before, articles such as “The difficulty of choosing the right bed for your baby”, or “The baby stool guide”, with a nicely laid out series of photos so that you can professional diagnose just what state the contents of your baby’s nappies are in, most other parents read them in all seriousness.

We are all more normal than we believe

But this isn’t the case at all. Fortunately there are enough normal parents who buy their prams second hand, who let their children play outside (even when it’s raining), who trust them enough to let them use a penknife, who don’t demand that they wash their hands before each and every meal, and with whom you don’t have to hold a minimum of four telephone conversations (not forgetting the dietary advice) before their children are allowed to come over and play, because their children simply knock on the door.

And this is exactly the same when it comes to prenatal screening. Not everybody has it! I keep reading the statistic that more than 90 percent of children with Down’s syndrome are aborted. This simply isn’t true! Shockingly, out of all the children who are diagnosed with Down’s syndrome before they are born, nearly all of them are killed prenatally. But what about the numerous women who don’t make use of the opportunity for prenatal screening, who want to accept their child, however they may be? For them, this figure of “more than 90 percent” isn’t true at all! They give birth completely normally, without subjecting themselves to all these tests before hand. All the same, these women are made to feel anxious by these falsely interpreted statistics, which tell them that all other women would supposedly submit to prenatal screening and would abort their babies.

I would like to encourage everyone to have children and let them be exactly as they are. I can say with a pure heart that even in the “worst case scenario” you end up having exactly the child that belongs to you. If you don’t have a Willi from whom to learn these lessons, the best thing that you can do is to have as many children as possible. This will protect you from having to read each and every superfluous article in parenting magazines while wasting far too much time researching gluten-free baby food.

But even in the case of parents who nevertheless do all of this, there’s one thing I still strongly believe: If you unconditionally love your child, it’s impossible to do much wrong!

About the Author: Birte Müller is an author of picture books, an illustrator and a columnist. She writes about her daily life with her son Willi who has Down’s syndrome, her daughter Olivia who suffers from Princess syndrome, and her husband who has multiple profound normality.