To celebrate Mother’s Day, Down Syndrome NSW is putting a spotlight on just a few of our incredible mums, who are raising our super heroes of the future. 

By Fuzz Ali, Down Syndrome NSW Ambassador 

I don’t think I will ever meet a baby as adorable as Amelia ever again, and her mum Lucy knows it. A new mum, Lucy’s love for her daughter, and dreams for a future full of adventures for her are beautifully overwhelming. She particularly talked about the importance of the words we use to describe people, ending our conversation with the most accurate of all for her baby girl – “perfect”. 

What does Mother's Day mean to you as a new mum?  

It's kind of a day of celebration for us. I've always wanted to be a mum, and she is just such a joy, so it's a really special day. For me, being her mum is really the best job in the world.  

And you said you've always wanted to be a mum?  

Always, always wanted to be a mum. So she just feels like a true blessing. And she arrived on my birthday as well, so it’s extra special. 

So you share a birthday? How gorgeous! 

I know. And it was so weird because I knew she was coming, even on the actual day there weren't any signs of her, any contractions or anything like that, but I just knew that she was coming. And then about 10:00PM the night before, the contraction started and the next day she was born by emergency c-section, 2 months early!  

And we're both Leos!  

So am I! Tell me, do you remember the moment where you were told that Amelia would have Down syndrome?  

Yeah. Look, it's probably a day that we can never really forget, and not for good reasons really. It was kind of presented to us in a very sad and somber way that she has Down syndrome. And we really fed off that kind of emotion that was projected onto us in a way. I was pregnant when I was told. We kind of struggled with that because we didn't really know a lot about Down syndrome.  

Do you remember the words that were used by the professionals at the time?  

“Sorry”. We got told “I'm sorry” multiple times, and that how most conversations started. "We're sorry." It’s heartbreaking thinking back now because she's so precious, and I wish that all of those health professions that were so negative could see her now, and what a joy she is.  

Based on that experience, were you afraid or concerned, anxious - what were some of your overwhelming emotion?  

The reaction from the health professionals really impacted on us because it was all so negative. I mean it was unexpected, obviously were expecting to have a neurotypical child. So it was a shock for us getting that diagnosis. But a lot of the fear stemmed from the unknown - we just weren't really educated about Down syndrome.  

What sort of coping mechanisms did you employ to get through it?  

I honestly think she got us through. Every time we went and we did an ultrasound and we could see her heart just beating away, it gave us comfort. Also, once we reached out to Down Syndrome NSW, that actually was a bit of a turning point for us. We reached out and initially spoke with Julie, and then with Melissa, and hearing about their stories, about their daughters and their experiences and just being able to ask them questions was such a help. Soon it just became apparent that it's not that much different from having any other baby.  

Thinking about The Congratulations initiative - if that had impacted the health professionals at the beginning of your journey, and if they had access to that information, and to the language necessary, do you feel like that would have helped you?  

Definitely, 100%. And I remember so vividly the first time a nurse actually said “congratulations” to me - it was such an emotional moment. I'll never forget it.  

In a way, I feel robbed of a little bit of the joy and celebration we should have been feeling when I was pregnant, with such a beautiful little girl. So it would have made a huge difference to us just hearing those words.  

Did you have any misconceptions that Amelia has changed for you? 

She is just constantly surprising us and inspiring us. She's just so strong and resilient, and we're just learning so much from her along the way - how to be more patient and kind, and all these beautiful, beautiful things.  

I suppose one misconception for us was that she'd potentially be completely dependent on us for the rest of her life, for everything, and that's clearly not the case from all the beautiful people that we've met on this journey.  

Beautiful. And you've talked a lot about the importance of language, of course, so how would you speak to somebody whose child had been diagnosed with Down syndrome today?  

I would say buckle up and prepare to fall head over heels in love. Since the day she was born, the journey has been such a joy for us. We feel so, so blessed to be her parents.  

And I would also say, don't compare your child to other children because your journey is unique and it's a special one.  

Describe Amelia in three words? 

Joyous, inspiring, and perfect.  

To celebrate Mother’s Day, Down Syndrome NSW is putting a spotlight on just a few of our incredible mums, who are raising our super heroes of the future. 

By Fuzz Ali, Down Syndrome NSW Ambassador 

Before meeting Kiyo Melbourne, I sat down to speak with Sean, her husband and father of their two sons Kaito and Yuki. Sean described Kiyo as “strong and positive”, and from the moment you meet her these two things become immediately apparent. With a watchful eye over her two boys running around the café where we met, Kiyo shared her journey of being Yuki’s mum, illustrating her defiance in the face of any and all negativity, insisting that Yuki was part of the “perfect casting for [her] family.” 

What does Mother’s Day mean to you?  

Our jobs as mum’s is kind of invisible (smiles) and Mother’s Day is an opportunity for my own kids and the world to stop to recognise everything we do out of love. It’s a day of reflection, and even I stop to realise my role in my boys lives, because I feel that the world is expressing gratitude towards mums. My older son, Kaito goes to daycare, where they do paintings or little crafts as gifts, and when I receive them it moves me, because being Kaito and Yuki’s mum is so normal for me – I don’t think about it day to day.  

What does it feel like being a mother of two boys?  

Well, obviously, it's busy, but all kids are unique, and then those unique kids create a unique mum like me. So I really enjoy it! It's kind of a new profession for me, or a new job to do in my life.  

What is your work background? What did you do before the boys?  

I've been working as a religious minister, so I preach in Australia, New Zealand, and America. I used to travel a lot when I was single, but I had Kaito soon after I got married, and I wanted to focus on my son. I don't ever say give up the job, but I changed the job to be a mum.  

Having welcomed your new role as Kaito’s mum, you were soon also about to experience the joy of being Yuki’s mum. 

Yes! 

How did you respond after completing the Harmony prenatal test which concluded that Yuki would be born with Down syndrome? Do you remember how you felt?  

The first thing I thought was, oh, my gosh, we are getting something absolutely unexpected. So, I did feel a bit shock in that way. The second thing I thought was about how Kaito would feel about his little brother with Down syndrome. And the third thing I thought was, this is a perfect casting for my family. I knew that Yuki would be a good teacher for the entire family.  

That's very beautiful.  

Yeah, I just thought, wow, this is a perfect casting for my family. I knew he would bring something new to our family. 

Do you remember if you felt afraid or anxious?  

Not really, because I just thought, we are supposed to have Yuki the way he is. I did feel like maybe I should feel anxious, because we had a lot of checkups at the hospital, and then the social worker would always say, "do you have any worries or anything you would like to talk to us about?" And then the possible things that could go wrong, or the difficulties Yuki might face. But I thought, we haven’t found anything bad yet - so in a way I was receiving very negative information, but I just thought, it’s not happening right now.  

Sean and I share the attitude that if something happens, then we will work on that. So we just focus on right now.  

On today.  

Yeah, on today. And then if something happens, we will think about it, or we will plan for it.  

That's a great attitude to life.  

Yeah, so I think we are very relaxed parents. The quiet relaxing parents. I remember there was a 1 hour and 30 minutes ultrasounds session, and then the doctor said, "they might find something wrong with the baby", but I didn’t focus on those words. I was almost falling asleep, and Sean opened his laptop to do some work. So we just let them do it. 

That's pretty beautiful. What do you think was the hardest part though for you, when Yuki was first born?  

Quite... quite easy.  

Quite easy?  

Yes easy because - I had such a hard time breastfeeding Kaito (first son), and he was my first child so I didn’t know how to do a lot of things, like any first time mum. But Yuki did such a great job in breastfeeding and everything. It's very hard to find the difficulty part.  

I suppose the reality of having to take him in for regular check ups was a little bit difficult, but it was for his health. It is a month of juggling two kids, who both need my love and attention. But that’s it.  

How do you think DSNSW’s Congratulations initiative might have changed your experience if you had Yuki when it was in effect?  

I think I would have received less negative information, and had some positivity when I found out, which would have made it easier. I had some stress about the negative information, but I kind of filtered it out because it hadn’t happened. I had to tell myself that all kids are different, including Kaito and Yuki. So I decided not to worry. But if I had the benefit of the Congratulations initiative, I would have been given positive energy about having a child with Down syndrome.  

Did you believe anything about Down syndrome before you had Yuki? And did you have any misconceptions that have changed since? 

Well, because of my age, I always felt the possibility that my baby might be different. It’s one of the reasons I had the rest – I wanted to be prepared. So I tried not to have any expectations, and just wanted to be ready. 

You speak about your experience with such grace and openness. I think that's really beautiful. Do you think that the way that we speak about Down syndrome would have an impact on the way people understand people with Down syndrome?  

Well, it’s important to understand that Down syndrome is not a disease, it is just one of the human character types. That’s how I see it - a character type. I believe that everyone has their own mission or purpose in this life, and we must respect every single persons life.  

I just also want to say that raising the kids is a big responsibility and it's a hard task, whatever the kid is. Whether your son or daughter has Down syndrome or doesn’t, parenting is very hard, but very rewarding.  

As someone who is the parent to 2 puppies, I think I can understand! So speaking of character then, can you describe Yuki for me in three words?  

Cheerful and uplifting - is that two words? (laughs) Okay one more... he's just cute.  

Teresa Haddock

To celebrate Mother’s Day, Down Syndrome NSW is putting a spotlight on just a few of our incredible mums, who are raising our super heroes of the future.

By Fuzz Ali

Being a mum to 14 year old Ben is a joy for Teresa. Their journey together has seen her witness him grow into an independent and social young person, with a love for performance. She says that more than anything “a child needs love, and as a parent, you are equipped to give that to them.”

What does Mother’s Day mean to you?

Spending time with our mothers and fathers, and those who play that role, to acknowledge how important their love, support, and presence is in our lives. 

Do you remember the moment you were told that beautiful new life you were bringing into the world would have Down syndrome? 

Yes, I do remember that moment which was a prenatal diagnosis in a medical office. It felt impersonal and that I was being referred straightaway back to my obstetrician for a termination without asking my opinion, or how I felt, or if I knew anything about Down syndrome. 

Were you afraid, concerned, anxious? 

I was anxious. I had never met anyone with Down syndrome before, and I didn't know if I would be a good enough parent.

What was the hardest part about those early days, and how did you get through them? 

The negative views and low expectations about those with Down syndrome from medical professionals was the most disappointing thing about the early days. We also shortly after received news that our son had a hole in the heart that would require surgery, and we were much more concerned with that than the initial diagnosis of Down syndrome. Our family were very supportive, our faith helped us, and contacting Down Syndrome NSW was an important step.

How did The Congratulations Initiative help you?  

It was called a Welcome Pack,  I think, when I was pregnant and it was so helpful, providing me with accurate and up to date information on all that people with Down syndrome can do, links to Early Intervention providers, and the type of support that my child might need. It also put me in touch with a parent of a child with Down syndrome which was wonderful. I met her and her daughter whilst pregnant with Ben.

What is the biggest misconception you believed? And how has that since changed?

It is hard to pick one. One that stands out might be that they stop learning in early primary school. My son has continued to grow, develop, and learn as we continue into the middle years of secondary school and I'm sure he will keep progressing and enjoying his life.

How would you speak to someone whose child has been diagnosed today, based on your experience? 

I would say congratulations on the birth or pregnancy of their loved one. I would acknowledge any fears or trepidation. I would say that the number one most important thing a child needs is love and you as their parent are equipped to give that to them. They will be a young person with their own personality, dreams and desires and potential which is beautiful to witness. See their potential. Choose the positive professionals and therapists your family needs. Reach out to the Down Syndrome NSW, support providers, and other parents who can assist, and be a source of knowledge, advocacy, and form an important network. Also, take time for yourself to recharge.

How important is the language we use when speaking about the community to foster a positive atmosphere around the subject? 

Positive language that sees the potential and capacity for our loved one is fundamental to their growth, in raising expectations, removing barriers, and ensuring the community has the rights all people are entitled to.

Describe Ben in 3 words? 

Independent, loves performing, and social.

To celebrate Mother’s Day, Down Syndrome NSW is putting a spotlight on just a few of our incredible mums, who are raising our super heroes of the future. 

By Fuzz Ali, Down Syndrome NSW Ambassador

Anyone who has met Ellen Maher knows that she is a confident, intelligent, and charismatic young woman, filled with kindness and an unquenchable joy. At 24 years old, and navigating a packed social calendar, work life, and dating - the rich tapestry of Ellen’s life can be traced back to her loving parents. I had the great privilege of speaking to her mum Claire about her daughter, who she calls her “greatest achievement”. 

What does Mother's Day mean to you?  

I suppose it's a reminder to reflect on having your beautiful children. I have three children. But having said that, I do that a lot anyway, so I don't know that Mother's Day is really any more special to me than any other day to be honest, because we’re a pretty connected family. There is a lot of love. 

When you do reflect on your role as a mum to all three of your children, what comes to mind?  

Well, I think out of anything else I've done in my life, they're my biggest achievements. All three of them. I think being Ellen's mum took more time, more energy for her to be a 24 year old young woman, who has good social skills, can interact in public confidently, and she constantly tells me how much she loves her life. I probably look and think she's probably my greatest achievement.  

What I mean is that the other two could have lots of opportunity, and they’ve always been able to seek those opportunities from when they were younger until now. Whereas with Ellen, I would have to help her find opportunities. For example, gymnastics - Ellen's a very good gymnast. I was just looking for things that would help with health and fitness, and she's still doing it 20 years later because she loved it. Or her involvement with Bus Stop Films, which she has been doing now for six years and loves it. So it's working a little bit harder to find more opportunities for Ellen so that she has choices, and more chance of finding her passions, and enjoying the life she has been given. 

There's nothing I regret anyway about the effort that and energy that's gone into…  

Into creating such a great human being.  

Yeah. And to helping Ellen find who she is, what she loves, who she loves. She's met Sam, her boyfriend who she's so excited about. 

You have been Ellen’s mum for 24 years, but I want you to go back right to the beginning if you can, and just try to remember the moment when you were first told that Ellen had Down syndrome.  

Okay.  

What did that feel like?  

I can tell you because I remember it very clearly. So she had been delivered and they took her off to special care nursery. And then I was back in my room in the hospital, and Paul was with me, and the pediatrician and the obstetrician came into the room and they closed the door and they sat down and they said to me, "your daughter has Down syndrome." And without a word of a lie I said, "is that all? Thank God, because I thought you were going to tell me she died." It was such a relief, so that was a great place to start.  

Definitely a relief! What were those early days like for you? 

Well, on the second day after Ellen was born, the pediatrician came in and he shut the door and he sat down and he said, "Ellen's got two holes in her heart." So we talked about that on the second day. And then on the third day when he came in and shut the door and sat down, we're going, "okay, what is it today? Come on, hit us with it." And he says, "she may have leukemia." Thankfully it turned out she didn't, but, in the moment I though to myself, is that the best you got? We’re gonna do this. 

And when I think about talking to our friends and family - people looked to us and they took the lead from us. So if we were positive and we were upbeat about it, leading with "hey, guys, we've got a little girl, and she has Down syndrome." Because people didn't know how to react, so it felt that the best thing for us was for people to take their lead from us  

You really took charge of the narrative at a time when a lot of people didn’t have the words. What impact do you think the Congratulations initiative would have had on you had it existed when you had Ellen? 

I think one of the things that having Ellen made me realize about myself, I'm a good advocate, and we need more advocates in the world. Right from the very start I felt like I needed to assert that my daughter is not a thing. I think that I was pretty good at challenging anything that I felt was not treating Ellen or myself with the respect and understanding that she and I deserved.  

I can remember, going way back, when Ellen was about four weeks old, and I went to the letter box and I got out a letter from the Department of Health. I pulled out a triplicate form that said, "Birth Defect Notice." And I looked at it, I went, are they kidding? Do they think my child is like a defective car, and you get it off the road until it's fixed? I sat on it for a while, and then when I mustered the energy, I wrote all sorts of letters and rang all sorts of people, and I’m thankful that parents don’t receive those notices anymore. I just thought, how dare they?  

Ellen has brought out strength in me that I probably would never have known was there if she wasn't my daughter.  

How would you speak to somebody who came to you today and told you they were having or have a child with Down syndrome?  

Would you like to meet my daughter? Would you like to spend an hour with my daughter?  

That is so powerful. Having been Ellen’s mum for all these years, and seeing the incredible, confident, talented young woman she has become – can you describe her in three words?  

She is amazing. 

I love that.  

She is. She just... I don't know. For someone who society says has a disability, she has no idea what discrimination is because she's never felt discriminated against in her life.  

Wow.  

Whether that is because she never has been, or if it's because she has been but hasn't recognized it, I don't really care. It hasn't had an impact on dragging her down and making her reality. She can proudly say, "I'm different."  

Debra Jefferis

To celebrate Mother’s Day, Down Syndrome NSW is putting a spotlight on just a few of our incredible mums, who are raising our super heroes of the future.

By Fuzz Ali

Debra has been Sam’s mum for 25 years, and has been central to helping him navigate life and find independence as an adult. Her, and her husband Chris, are not short for words when they talk about how proud they are of the young man they have raised, exclaiming proudly that he has “taken us on so many wonderful adventures, far beyond our expectations.”

What does Mother’s Day mean to you?

Mother’s Day is a time to reflect and celebrate being a proud Mother to both my two children.

Do you remember the moment you were told that the beautiful life you were bringing into the world would have Down syndrome?

Sam was a bit of a surprise, especially as I delivered him in the back seat of the car on the way to hospital! I knew as soon as his face popped out, before I even knew what gender he was.  It was an anxious time because he was blue and needed medical intervention.  The nurses at our local hospital didn’t know what to do. They gave us a red folder on Down syndrome and ran away! A few hours after Sam was born we were airlifted to Westmead and Sam was in ICU for the first few weeks of his life, which also included successful surgeries for both duodenal atresia and Hirschsprung’s so we are very grateful to our medical team.  

Were you afraid or anxious? What was the prominent feeling during that time?

Initially there was an element of shock, and I felt afraid for the future.  Everyone we met said they were sorry and so, to be honest, it felt as though it was all a bit of a disaster.  The future looked a bit grim and there were no “congratulations” for us, instead we got a shopping lists of the challenges ahead. I definitely felt grief for the child I thought I was going to have, but also tremendous guilt because I felt that a Mother shouldn’t feel this way. Having this secret guilt probably made things worse because I felt I couldn’t share this with anyone. Sam had a lot of health issues for the first 18 months which resulted in very little sleep and our journey had a quite a few bumps. Early on, we decided to stop looking ahead, and to take it one week, or one day, or even an hour at a time. It made us stronger as a family.

How did you get through your concerns?

Luckily at 6 months we began at our local Early Intervention Centre, where we heard lots of congratulations and it was so refreshing to have our child celebrated!  Every week we went in, the team there were always so happy and delighted to see us.  We felt safe and nurtured, so much so that when Sam left at 6 years I stayed, and have been working there ever since, supporting other families on their journey, and joining them in celebrating their wonderful children!

You were congratulated at Early Intervention, how do you feel the Congratulations initiative now helps parents navigate those early days?

Hearing congratulations and having Sam celebrated at Early Intervention gave us enormous hope for the future which made a massive difference to our whole family. It wasn’t helpful to be told all the negatives like, “he’s unlikely to walk or talk”, or  “he won’t know his own name”, or “he’ll never understand about celebrating a birthday”, and perhaps hardest of all, “most people terminate.”  How wrong they were! 

If only we had known then what we know now – that this person we were bringing into the world would bring us so much joy. Sam has taken us on so many wonderful adventures, far beyond our expectations. He’s taken us to Darwin with his First Nations Dance group, to Queensland, Victoria and Tasmania for AFL, to SA for cricket, and Sydney for swimming.  So yes he does walk and talk and sings (deary me, not that well but he gives it all he’s got!)  And in Kindergarten not only did he pick out his own name tag, he helped others find theirs, and he definitely knows his birthday and is the first to celebrate birthdays of those around him.  

How would you speak to someone whose child has been diagnosed today, based on your experience?

We have been lucky to know families with younger children and “big congratulations” is of course the first thing we say, every time. There are going to be some bumps on the way, but there’s so much to look forward to. Find your tribe, and start with Down Syndrome NSW.  They’ve helped us through so many stages of Sam’s life. Celebrate and enjoy your beautiful baby. Don’t be afraid to give things a go, try new things, find what works for you as a family, ask questions and if you don’t like some of the answers, explore and ask someone else. You are the expert on your child and always will be. You will be amazing at advocating for what is right for your child. Enjoy all the innumerable beautiful qualities of your child. And if all else fails, turn up the music and dance!

We can proudly say that Sam has a great life.  He says it himself, frequently. He has a job, he has a girlfriend (117 dates and counting), he plays AFL and helps coach Auskick, competes in CrossFit Games, and in triathlons. He has recently taken up surfing and golf, and 6 months ago moved out of home and is very happily living with 2 lovely supportive flatmates with the help of a support team. This giant leap was from attending a Down Syndrome NSW 2 day conference about Independent Living.

It took us quite a few years to get a team around him. He lives just a few doors down from us so we still get to see him most days, and still support him, but he’s definitely raised the bar with his independence since moving out.

How important is the language we use when speaking about the community to foster a positive atmosphere around the experience?

Positive language is really important to educate the world about our beautiful children. 

Describe Sam in 3 words?

3 words to describe Sam is hard – Enthusiastic about life. Full of joy. Social. Honest.