in and out and in and out

Your favourite support worker over the past few years has just resigned. I’m sorry, Em. You rang me when you found out. You said: it’s ok, I’m used to it. And my heart hurt.

Not many of us would be happy having to invite someone into our lives and our homes. You welcome these people into your home, your life, your world, your family. To some of them, it’s a job. But we have been lucky and most have loved you just as much as you have loved them. Still, they have their own lives and just like that, they can sign out of yours.

No one else is there when they are with you and M. I can’t help but wonder, do they ever turn up late? Do they ever look at the clock and sneak out half an hour earlier than the roster suggests?

A long time ago I worked at a house where all the residents were Deaf as well as having mild intellectual disabilities. When I was being shown the ropes the support worker teaching me would stop signing and speak to me verbally in front of people when she wanted to say something about them (and what she had to say was not good, like: put them to bed at 8pm so you can have some time to yourself). I was appalled and signed back when I responded. She said: oh they can’t understand you anyway. Once I got to know the people I was supporting I discovered this was absolutely not true. The first night shift I had was a Friday. We stayed up late playing board games and I encouraged each individual to decide when they wanted to go to bed. Most of the workers at that house were fantastic. A few were not. As has been my experience everywhere I have worked in the disability sector.

So I do tend to be sceptical when it comes to people’s motivations.

Has anyone tried to brush you aside, making the assumption that you don’t understand or can’t make your own decisions? Sadly the answer is probably, but we might not ever find out for sure.

motherhood and Down syndrome

I have just finished writing a post for a lovely lass called Annie Love for Down Syndrome Awareness Month. It will be published in October at some point so I will check back in later on with the link.

I never really know where to start when I’m writing about Down syndrome and my experience of it as a sibling. All my life I feel like I’ve been forced into a position (of my own doing) to sugar coat things and combat all the negativity that surrounds disability. I never wanted people to think Emily couldn’t do things so I would scream positivity from the rooftops at anyone who would listen.

Now that I’m a bit older I feel like honesty is the way forward – acknowledging that things haven’t always been easy, but that doesn’t mean I would change anything about my life.

Becoming a mother has stirred something in me. Motherhood has taken me back to the very beginning… not just my daughters’ beginnings, but my own beginning too. Somehow parenthood and the pregnancy process has the ability to make you reflect on your own childhood, in ways which you never have previously. Pregnancy and the raw experience of it is where Down syndrome is created. During each of my three pregnancies I was acutely aware of the delicate nature of creating a human.

I was offered a number of tests during pregnancy, and it seemed like the world was trying to offer me the chance to style the perfect child. That if I found out that there was something missing, or if the child wasn’t exactly as I imagined, I could just start again. I can’t help but think, or hope, that if the community had a better understanding of Down syndrome it would help them to make decisions about their pregnancies, should the need arise. Without information and understanding a choice is not informed, it is made from a position of fear.

I didn’t have prenatal screening for Down syndrome during my pregnancies. I don’t think this is the right choice for everyone, it was just my choice. And given my lifelong experience with Down syndrome, along with a degree and career in the disability sector, I can confidently say it was an informed choice.

It worried me that during this process where I made decisions about which tests to take, and which to dismiss, I was given such little explanation of my options. I certainly wasn’t given any information about Down syndrome. I can’t imagine ever taking a test without knowing the reason why. I want to know: what am I trying to protect myself and my baby from, and why? I believe it is with information and understanding that better decisions can be made.

I hope that during the World Down Syndrome Awareness Month people can learn a bit more about Down syndrome – not just the flashy and the good and the cheerful and the “UP NOT DOWN!” and so on, but the somber side of Down syndrome as well. I hope people can learn to view people with Down syndrome as rounded, full and diverse individuals. I hope that with a little more understanding they can make better and informed choices during and after pregnancy. I hope it helps to dispel some of the fear.

Life would be so boring if we were all the same.





I’m pregnant with my third baby.

When we spoke the other day you were insistent: “Are you eating enough pasta? It’s good for the baby.”

I tried to explain that pasta probably wasn’t the best thing I could be eating, out of all of the things… but the pasta discussion continued.

“The baby needs pasta. It needs carbs to be strong.” you said.

Reluctantly I gave up and agreed: “Yes,” I lied, “I’m eating lots of pasta.”

Happy with this, you changed the topic.

Sometimes, I need to learn to keep my mouth shut and just agree with you.

a coffee

You rang me at work today, “Hello,” you said, “I’m around the corner, would you like to come and have a coffee with me? Uh.. I’m not meant to be at work today and I don’t really know what is going on.”

You recently got a new job at a(nother) coffee shop, very conveniently located within walking distance from my office. You have been routinely arriving an hour before your shift begins, but your new boss assures me it is not a problem. Right on cue – it was 10.34am – you don’t start until 11.30am. But on this particular day, you weren’t on the roster as your boss thought you were still on holidays. Hence, the phone call.

I left my desk and walked down to meet you and figure out what was going on. I found you sipping a cappuccino outside under a white umbrella. I spoke to your boss and she explained you would be on the roster next week. She felt terrible you’d travelled all the way on the train to come to work, but there was nothing much she could do as she genuinely didn’t need you that day.

You took it all in your stride, you’d called me, Dad, and one of our other sisters and had us all lined up to have coffees with you one after the other rather than get on the train and go back home again.

I love your initiative, Em.


My eldest girl was sick and you were concerned. It was just a cold, I assured you. I could hear the worry in your voice. You wanted to come over and help me, you’re an Aunty, it’s your job, didn’t I get that? You didn’t understand that it would take me over an hour round trip to pick you up and bring you back here, and that the kids needed to sleep. And that I was actually fine and just wanted to go to bed.

Finally, I convinced you that you could help me more by being on the other end of the phone.

Your parting advice: “Potatoes. Feed her potatoes.”

sister to sister

The phone rang and it was Emily. After all the usual formalities she said: “I want to talk to you, sister to sister. I want to talk to you about sex.”

I sat forward on the couch and rubbed sleep from the corner of my eye. “Yes? Ok. Great. What do you want to talk about… about sex…?”

I won’t go into the rest of our conversation, as it was private – sister to sister. But it has got me thinking. About sex. And about disability. The majority of the time that you hear about disability and sex or sexual behaviour, it is about inappropriate behaviour, it’s about abuse. It’s about prevention – prevention from having children, from making mistakes, from doing anything deemed outrageous. Meanwhile, we all go back to our beds – or other destination – and have a whale of a time.

So. Where is this going? I want to know who is standing up for my sister. Who is out there, educating her about how to give and gain pleasure with her partner in a way that is respectful, loving, intimate and kind? Who believes that she has as much right to a loving and pleasurable sexual relationship as the next person? Apart from me, of course. Because I hazard a guess that in some families, she might not have someone like me that she can easily turn to for responsible and open-minded advice. Just a guess.

The number of times that someone has responded with an awkward slash strangely curious: “So… do they have… SEX?” when I tell them that I have a sister with Down syndrome who is MARRIED (gasp!) is unbelievable.

I have to bite my tongue, hard, to prevent it from spitting back: “I don’t know, DO YOU? Tell me all about it!”

What about you? How do you support your family member/friend/other with an intellectual disability to develop healthy sexual relationships?

I’d love to hear your stories.