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.

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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!

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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.

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13 thoughts on “Selling Down syndrome.

  1. I understand what u wrote how u feel as wades mum it’s hard to explain but I hear u I feel u it’s like I just read exactly the point or stage as how I feel it’s so hard 2 make the choice of workin or b at home
    It’s hell for me at the moment as I have started a buisness so that I could have my baby age 1 with me at all times as I am not at the trading end yet we is starting from scratch
    But already after 3 weeks I am feelin it is all 2 hard 2 b a super mum lol
    I just want wats best for my IMOGINE as u do wade as I 2 hope that I will have people question me if she has the extra crow or not as I know she will b successful in wat Eva her path of life may take her just as I do and r with my other child age 17
    Small town minded people r really getting 2 me we made a sea change 6 months ago I wanted a village to help raise my child it’s starting 2 feel like I wouldn’t find one anywhere and it’s so unfair it’s cruel god it’s a cruel world I am so scared for my baby as I know I can’t hide her from the world I just want her to b treated right as I know I can’t hold her hand forever
    She changed my life in ways I Neva felt possible or even considerd y y y y y won’t everybody else change 2 ? Un educated unaware who knows but it’s not fair it hurts wat I have dealt with this pass week its been like livin those 1st few days few hours of knowin IMOGINE was rockin the extra crow 30 min after delivery only 100 times worse Neva thought I would have 2 re live that but I am 12 months later I feel your pain as the mum there is no hand book nor the correct answer u can’t answer me I can’t answer u wat do I do work or home very very hard choice r u loosin sleep ? (I is)
    From one mum 2 another u r not sellin Down syndrome at all get that thought out u mind all I can say 2 u is don’t quit don’t give up mayb try to go bak to work if it’s not right 4 u and wade or doesn’t suit u quit mayb try again later on down the track the sayin goes if u dont succeed try try try again but we will Neva know until we try
    Thinking of u and wade always Maryann (one of u and wades no.1 fans )

    • I think that every parent has to make big decisions about what is best for their families. Imogine sounds lucky to have a mum who is thinking about her future and trying to do the best. Thanks for your lovely words Maryann.

  2. It was very interesting for me to read your thought processes because they are quite different to mine. While I also see my son’s potential learning and importance in society as no less, I operate with a franticness, not business as usual. That’s because I know my boy is capable of learning amazing things but he learns differently! I feel pressure to find programs and methods to teach him in a way that he ‘can get’. So much work has been done since the seventies on learning with disabilities but it is so hard to access programs to benefit from that knowledge. Even accessing mediocre speech and occupational therapy seems impossible. DSAV provide the most amazing school support and I have watched my son grow in leaps and bounds academically thanks to that program but therapy and guidance seem impossible to find locally in our rural area.

    Yes, my son is amazing and I can’t imagine life without him. He enhances our lives but due to a lack of support for disability, my life is NOT the same as it would have been. However that pressure is created by our society not placing enough importance on disability education so that parents can relax and enjoy spending time teaching their children instead of frantically searching, searching, searching…..

    • It must be really hard to get good services in a rural area. The DSISS is a great service, isn’t it? I think I have a lot to learn over the next few years as Wade starts approaching school age….hopefully I will be able to work out the best way to teach him and still find time to enjoy our lives! I don’t want to sacrifice too much quality time finding and doing complicated programs either! Only time will tell I suppose.

  3. Oh, my gosh. Pulled in a million directions, me too! It is really intensifying right now for me and I just do not know what to do.

    I feel like there is a phenomenon where everything in my life and LP’s is attributed to one aspect: his disability. And try as I might, I can’t seem to get across to people that the ups and downs are the same as most ups and downs; they just are! Yes, the details are different, you’re focusing on communication because Wade needs some extra help there. I don’t see your decision as much different than mine to homeschool my kids, or become a SAHM, or someone else’s decision to get math tutoring for their child.

    This is the kind of privilege that gets taken from us as parents of children with disabilities, and I hate it. And it does feel like a privilege now, doesn’t it, to be able to complain and whine and throw our hands up like so many other parents seem to be able to do?

    Anyways. I’m rambling on because I feel so many of the same things. Let’s end by talking about how cute this boy of yours is. Love him! xo

    • Ha! Ramble away. Yes, he is enormously cute. I could write an entire post about how adorable he is eating apple purée but I might bore everyone to death! Yeah, I’m hoping things should calm down a bit more now that I have a bit more time in my week. I would like to think less about him having DS per se and more about Wade and what he needs and seek that out. P.S. LP is one big cutie pie too!

  4. I think it’s important to be open about the hard parts because when we say how great it is most of the time, people are more apt to believe us. When I first found out Owen would have Down syndrome I scoured the blogs and message boards looking for all of the bad stuff. I wanted to hear all the nitty gritty so that I could wrap my head around it, accept it and move on. What I found was rainbows and butterflies and I didn’t believe people were being honest. I thought all the positivity was just a front, a coping mechanism. I now know that’s not true. Our life truly is not that much different with the presence of an extra chromosome, but it has been and will be hard at times for a million different reasons. Most of the time it’s average run of the mill mom juggling, and sometimes it is connected to Down syndrome. I think it’s important to share both.

    And I agree with Jisun, that little ice cream smile melts my heart.

    • It’s really hard to find the balance. I think parents of kids with DS benefit from good information whether it’s positive or negative. New parents that have just got a diagnosis may get too overwhelmed with a whole list of negatives that may not even apply to them and the general public need to be told positive stories to counteract the years of negative stereotypes. I think that just reminding everyone that every parent faces good times and bad times and we should all be able to have a good winge when we need it! Thanks for your thoughts, it’s not ice cream by the way, it’s a babycino! We like to get our kids addicted to cafe culture early in Melbourne!!

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