The early months with Wade had their ups and downs but most of that was due to fact that we were new parents and were working this thing out as best we could. Down Syndrome played its part but only in the practical hiccups that we had along the way. There were more doctors appointments than usual, more information to understand and more time spent working on his physicality to help with his development. The thoughts I’d had during pregnancy about what it would mean to raise a child with DS didn’t change after he was born. Wade was happy and healthy and Down Syndrome was not much of an issue for us, luckily. I felt validated that all of the research and mental preparation I had done had paid off and I was already realising that Wade was capable of surprising things…
When Wade was 5 months old, I watched a Spanish film on SBS called “Me Too” DSV had posted about it on their Facebook page. It was on at 9.30 and I seriously doubted my ability to stay awake past the first 5min. Well, I not only stayed awake, I had a profound experience watching it and was incredibly emotional all night and most of the next day.
The film told the story of Daniel, a 34 year old man with Down Syndrome. He is intelligent, educated and high functioning who has a job and a degree. He falls in love with his co-worker Laura who does not have the condition and cannot give him the relationship he wants. Daniel is funny, caring and loving. However he straddles two worlds and doesn’t really fit into either. Laura is an emotionally damaged and highly flawed individual. The relationship that develops between Daniel and Laura is deep and real, but ultimately, it could not progress because Daniel has DS. It was incredibly moving for me. To me, Daniel seemed the perfect partner. He is grounded, self-aware, hilarious and incredibly caring. In my mind, the only reason he could not have a relationship with the woman he cares very deeply for was simply because of the number of chromosomes he had.
Daniel is very self-aware of his condition and also of the extent to which he is different to others in society. At one point in the film, Daniel talks about his education and says that his mother always read to him and when she realised that he was listening, she would continue to teach him things about the world. I should have been happy and inspired by this but my stomach turned and I sobbed uncontrollably. I imagined this mother setting out to teach her son everything that she could and to make him as educated and aware of the world as possible and achieving enormous success in this. However, the result was a man who understands what it is to live a “normal” typical life, is capable of living that life but is also aware of the fact that he will never be accepted as normal by those around him purely because of DS. I couldn’t escape the feeling that if he wasn’t so educated and capable, he would have been happier with less disappointments and feelings of discrimination. It affected me deeply. I felt damned if I do and damned if I don’t.
I realised that I had never given much thought to the complexities that arise as someone with an intellectual disability faces adulthood and works towards an independent life. I have no experience in this area and I’ve never spent any real time with adults in this situation. I became worried that I had been deluding myself again about how equipped I was to deal with this. That I had enthusiastically launched myself into the role of advocate and defender for Wade without having any idea of what I was in for in the future. I became really worried about how to balance the responsibility to teach him everything he is capable of learning, and the need to protect him from the really crappy sides of human nature. I know that these are the worries that every parent faces with their children whether they have a disability or not. Yet, watching that character being so deserving of love and, through no fault of his own, unable to have it, broke my heart and it all seemed so incredibly unfair.
Another challenging aspect of the film for me was the theme of intimacy. Daniel watches porn and thinks about sex. He is a man like any other in this respect. I feel uncomfortable about this, not because I have an issue with someone with a disability having a sex but, like any mother, I struggle to imagine my son as a sexual being in the future. It makes me want to put my fingers in my ears, close my eyes and go “la, la, la, la!”
The notion of adults with a disability having a sex life feels like a taboo topic. My liberal, open mind wants me to be cool with it but, in reality, there are a few sides to the argument that I struggle with. Let’s face it, until it became relevant to me and my life, I’d never given it much thought. In the film there is a young couple, both with DS who are in love but her parents won’t allow them to have a relationship. Louisa and Pedro live less independently than Daniel and are a bit younger, in their mid 20s. They run away together and Daniel finds them at a hotel where he shows them how to use condoms and Laura ensures that Louisa is not doing something that she doesn’t want to do.
I don’t know what I would do as a mother in the same circumstances. It would make a difference whether you have a son or a daughter, I think. The problem with sex is that there are so many issues surrounding it, that it takes a certain level of maturity to navigate it safely. Unwanted pregnancy, sexually transmitted diseases and issues surrounding power, control, exploitation and possible abuse are but a few. I guess that I am ok with the idea of Wade wanting to have a sexual relationship (aaahhh!) but I also feel that it would require supervision or overseeing to a degree which is not really possible. I guess it will be up to us to teach him right from wrong on this issue. And here I am, returning to the same answer every time. Each time I think that I will have a problem unique to DS, I realise that it is a problem that every parent will have with their children. I am certainly not the first person to look ahead in their children’s lives and wonder if I can protect them from harm. The big difference comes from the fact that the consequences of getting it wrong in this case could be a lot more dire. There is a 35-50% chance of an offspring having DS if one of the parents has DS and higher again if both do. In fact the pregnancy will most likely end in miscarriage. On top of that is the issue of the couple’s physical and intellectual ability to raise a child especially if it has DS and some of the associated health risks.
As much as it breaks my heart, I know that Wade will never have children of his own.
I wrote a lot of this post at the time because I was so moved that I had to get it down on paper. Looking back over it now, I don’t feel as despondent. I know that people with DS find love and marry all the time but I also understand that shitty things happen in life… to everyone… all the time. I’m sitting here trying find the positive spin, the words that will inspire but sometimes there are thoughts that are hard and frightening so I will choose to acknowledge it for what it is and keep the ideas in the back of my mind. That way, when times get tough in the future, maybe I will be a little bit prepared because I have thought about it before and felt a bit of the pain already.
Next post will be happier, I promise.
Ok, here’s a cute photo so I don’t feel like I’m leaving this on a sad note…