Selling Down syndrome.

I am Wade’s mum but I am his advocate too. I made a conscious decision when he was born, to presume that he can do anything. Not for one second will I think, “he has Down syndrome so he won’t be able to do that”. I will not think to myself, well, I won’t bother teaching him world politics, for example, because he will never understand it anyway. If it becomes abundantly clear that something is beyond him or not of interest to him or he is physically incapable of it, then I will strike it off the list….but not before. I’m sure this sounds delusional and to be clear, this does not mean I have him on a strict regime of study so that he will become a Rhodes scholar come hell or high water…. What it does mean, is that if he wants to play a sport or learn an instrument or study at university or live independently or get married or work in a shop or run his own business or travel the world or drive a car or anything, I will help him do it to the best of HIS abilities, not to the best of society’s expectations. That is the difference.

Lately though, I have come across an unintended consequence of my enthusiastic advocacy….sometimes I feel like I am selling Down syndrome. The feeling that I need to stay positive about all aspects of Down syndrome all the time….as if acknowledging the difficulties will somehow undermine or negate the positives.
I get a sinking feeling when I want to talk about the challenges that come with raising a child with Down syndrome because I feel like people will say to themselves…“Aha! I knew it. I knew she couldn’t be that happy with a child with a disability.” I worry that people, who are unsure about what raising a child with Down syndrome is like, will take my troubles as justification for the fears they hold and forget all the times I speak about how wonderful he is.

I have always seen my story was a positive one but I definitely had my difficult times. That moment when I realised my unborn child, the one I had longed for and was already head-over-heels in love with, would almost certainly have Down syndrome was heart breaking and it changed my world forever. With some time I realised that Down syndrome wasn’t necessarily bad news. I realised that a diagnosis can’t tell you what life will be like and I knew that I loved this baby with unbridled ferocity. In fact, this was the driving force behind starting this blog. I wanted to talk to that mother who was doubled over with grief and fear about what may lie ahead, hold her tight and tell her that there will be a time when your heart will burst out of your chest with love and pride for this baby and it won’t be as bad as it feels right now. And, this has been true. Wade has brought me more joy and happiness than I could ever imagine.

But lately, I have found life hard.
There…I said it.

I have found it hard for many different reasons. Some of those reasons are related to Down syndrome and some of them have absolutely nothing to do with it at all. Some are due to general life-ache that wanders on in and sits down at my table from time to time. Some are just taken from the big “general parenting” book everyone flicks through at some point. As a result I have had to make a lot of decisions and this sends my emotions into overdrive. When anxiety gets the better of me, trying to make a decision is like standing at countless crossroads with my head full of bees trying make the choice between running through thorns or crawling on broken glass.

I put a lot pressure on myself to get things right. It’s not that I have to BE right or that I need to win, it’s just that if I am doing something important like keeping a small child alive or doing an important job, I NEED to get it right. I don’t want to compromise or throw my hands up in the air and think, “That’ll do”. As a result I put a lot of pressure on myself. Sometimes that is a great motivator but mostly it’s just an irrational pile of stress that stops me moving forward and making decisions. One of the biggest hindrances to sane thinking for me is fear of hypocrisy….and the thought that I am worrying about aspects of Down syndrome and what it might mean for Wade in the future is sending my hypocrite-o-meter alarms off.

Wade’s communication is developing, but ever so slowly. His physicality developed gradually too but it was linear. He built upon the things he learnt. He was motivated to get to the next stage and even though it seemed to take forever, I knew that with a bit of help and time he would do it. It doesn’t seem to be that straight forward with his communication. He is capable of learning, absolutely, but as my weeks become busier, I am finding that if I am not consistent or if I don’t spend the time that he needs to grasp a new concept, he forgets it and we have to go back to the beginning again. Words that he was very close to saying have slipped from the repertoire and I have noticed that he is not attempting to tell me what he wants very often. This may improve but I know that the best thing for him at this stage is for me to stay at home and focus on his communication. Instead, I am feeling pulled in a million different directions and I am compromising at every stage; staff member, friend, family member, cook, nurturer, wife…mother. I feel like I am trying to be several things at once and doing none of them well. I have started thinking about his future and his rights and responsibilities. I want him to have all the opportunities offered to every other child but I also expect him have good behaviour, good manners and the useful life skills that I would expect from any of my children. I know that he is capable of learning all of those things, but it has dawned on me that I need to start working on them now. To set out how I intend to go on. The work we do with him now will lay the foundation for how his language and communication develops. I will spend the rest of my life trying to change the world so that difference is more accepted and understood but forgive me if my cynicism about society’s attitudes means that I have a bet each way….just in case!

For this reason, I have decided not to work as much for the next 12 months and devote my time to his communication instead. Part of me knows this is the right decision for us and our family but part of me worries that I am being a complete hypocrite. I talk a lot about how ordinary my life is with Wade but putting my hand up and saying that I can’t work and need to stay home to be with him so that he learns to talk, doesn’t feel very ordinary at all.

When parenting a child without a disability it is expected that there will be good times and there will be bad times. There are reams of print dedicated to the enormous piles of grief that newborns, toddlers, teenagers and adults give their parents but at no point does anyone think….she would have been better off without that child….
As a parent of a child with a disability I worry that I will always be on the back foot as far as society is concerned sometimes, worried that I will have to constantly justify Wade’s existence or I will forever have to fight for his inclusion and acceptance.
I feel as though talking about the tough times is something us parents of kids with a disability do behind closed doors, amongst ourselves and put on our best face when we are dealing with everyone else. I am reluctant to talk about the hard times because I don’t want an admission of difficulty to be the chink in the armour that justifies the stereotypes I have been working so hard to dispel.

The fact is, parenting is hard for everyone. I should be able to rant and rail about the difficult times side by side with every other parent without wondering whether I am undermining the whole global advocacy movement for Down syndrome. So this is me…talking about how I am going through a rough patch and how having a child with an intellectual disability makes me worry more about his future and mine. How it adds another level of gravity to the decisions I have to make. How sometimes it makes the things I do harder.

This is NOT me wishing Wade didn’t have Down syndrome. This is NOT me wishing my life was different. This is me, having a moment when the weight of the importance of parenting makes me stumble a little….just like I imagine every parent feels from time to time.