Tell me about yourself....

I’m 36 and live Regional SE QLD Australia I live with my husband and our 3 children.

When did you learn you had MDS

I was 4 years old.  It was picked up due to slow growth and slow development.  My parents explained it to me in a way I could understand.  But I didn’t fully understand in till I was a bit older.

I knew the diagnosis but my parents and I only told who needed to know, ~ doctors.  Teachers as well but they were only informed of specific learning challenges eg. Poor short term memory etc.  I grew up in an era, where ID was very segregated still.  My parents were quite literally were inclusive before it became accepted.  NO one needed to know but if it never came up there was no problem discussing it.  My parents were honest to me at a very young age, and never labelled me, always fought for my rights,and provided opportunities of all sorts.

I did repeat Kindy – I found it helpful to be at a level of education of my capability. 

How did this change your view of yourself, your parents and your friends.

Ulimately I went through three different stages.

From the age of four – I was grateful that I could put a name to my challenges, so it never damaged my self esteem.  I am extremely thankful they were honest with me at such a young age.  Not telling my friends was sometimes difficult, but mostly there was rarely any reason or opportunity for them to know.  My friends were there because we shared the same values and passions.

As a Teenager

Still grateful but confused.  I was really sick with undiagnosed coeliac disease (a common health challenge in Down Syndrome and genetic disposition as well), as a teenager and I was getting medical information that was years ahead of what most teenage girls have to think about, especially on the lines of having children.  I started to get physically and emotionally drained of pushing through, just to keep my head up with my school grades.  I Actually got my first anxiety attacks and depression during this time, due to doctors and employers not believing what I could and couldn’t do, but it was a time where those things we not out in the public eye...  but no matter what you just have to keep going and not give up, despite the situation you are in.

As a grown adult

Appreciation of my life and challenges without which I couldn’t do  what I do now, as an advocate for Down Syndrome Australia, Down Syndrome Queensland and International Mosaic IMDSA.   I have a new sense of self-respect.  The effort and hard yards I put in for all the years and most of all appreciating those who I love,  family and friends, those that have been through massive challenges and setbacks with me and that they have endured in their patience and love for me.

Living with Mosaic Down Syndrome –  you never know what to expect any given day, for me living with Mosaic Down Syndrome it’s a guessing game of life - every day is a new day,  and you never know how you will wake up.  Some days I wake with energy but most its difficult to get moving.  But having a goal and having people you love and make the world better for them, keeps me going.

How important to learn how to advocate for yourself in school and work.

VERY – As a young teenager, I didn’t and it was tough and learnt the very hard way.  After hitting numerous depression and anxiety episodes and diagnosis after diagnosis on my health,  I realized I alone and was the only one who could change,  no one was going to do it for me, because no one knows what Mosaic Down Syndrome is, and how it affects the individual. It truly is a guessing game and a process of elimination.

 So I started advocating for my health -  that was the beginning of my interest in medical research around keeping healthy.  I will never forget my first educational experience of health education and advocacy.  It was just after signing up for a class at high school called Health Education and it focused on the public health and advocacy of all target markets of society.  It was here I did my first major assignment on public health and advocating for health rights.  It struck a cord with me – and it has stuck with me since.  I must have known it was my purpose in life, though I didn’t know it at the time.

I used my passion for research – from my passion for history and textile history and community health advocacy and applied it to Mosaic Down Syndrome. It’s exceptionally important to advocate for yourself,  as you can’t grow as a person unless you alone take the responsibility.  But as someone who lives with Intellectual Challenges you also need support.  I learnt the hard way with this, I thought I could always keep up with my typical peers and for a long time I didn’t think I had a disability though I did.  I was in denial but I also found that with supports for people with T21, were too easy for me, and it didn’t challenge me.  But my health was failing fast, I know now that advocating for support is just as critical as advocating for acceptance.  It’s a fine line of getting the right percentage of encouragement and acceptance and support for the things that make life challenging, when you live with Mosaic Down Syndrome or any ID, for that matter in either school or work.

Friends

I have always had a few good friends but it has been hard to foster other relationships long term with other people, due the extent of my therapies and time I need to rest to recharge.  I find my close friends who have been by my side all my life, but my friendships were founded on true interests and passions and similar circumstances.

Work

 My husband and I are part of a family business.  But due to my cognitive, I physically, mentally and emotionally cannot work in that industry it’s too difficult for me.  However, I am a fully qualified fashion designer and dressmaker prior to meeting my husband, amongst numerous other jobs supporting this. ( I had a hard time keeping due to my challenges).  I can’t remember how many jobs I have had.  But I do remember the ones that had profound impact on me both positively and negatively.

One reason I found retaining jobs difficult was the time and repetition it takes me to learn procedures and skills.  Once I have done that, I’m fine, but employers do not have time to spare to allow for that.

One thing I do regret was to focus my attention in jobs I was good at and not to fit a mould, because I never ever will fit a mould, I’m unique.  And I’m finally proud of that.   I studied fashion, (it took me double amount of time to finish it, but I did) and worked and volunteered in the Big Performing Arts Precinct in Brisbane in costume and costume conservation, which paralleled my career in Dressmaking and Design in formal and Bridal. I then met my husband though the choirs we are both involved with, got married and when we started a family.  Sewing and young babies do not mix – too many small unsafe instruments.  I changed direction and focused more on health and advocacy volunteering when the kids were little.

Now that the kids are older and are at school I work for Down Syndrome Queensland as their Community Engagement Officer and Down Syndrome Australia as an Health Ambassador.  In the future I hope to combine both my passions of medical research around Down Syndrome especially in mental health around my creative pursuits of designing, sewing and art.

In my spare time

I love spending time with my husband and children – we are all highly creative and we collaborate on creative projects together. But we also love music.  We actually met through singing which is one of our shared passions. Our kids love music also and are all learning the piano and our eldest is playing the euphonium and the others are keen singers and guitarists. 

I’m also a keen family historian  – combining these passions and loves of research, writing and art again.

I also sew and design for myself – though I haven’t done it for a while I will always find a way to play with fabric and do some artwork.  It’s ingrained in me and I don’t want to lose my skills. I was taught how to draw by my grandmother who was a exceptional left handed sketch artist. I have a huge appetite for Art History,  due to family and ancestor’s having exceptional talent in art,  whether it was watercolour, textile art, writing, woodcraft, sewing and tailoring.

 Yes I do drive – though I have to travel plan for new destinations.  I love a good country adventure – after all most of my family came from country living.  I Love drawing and designing clothes that are inspired by the outback, and im pretty adventurous.  I’ve been known not to be afraid of dirty and hard work, and get in the mix with helping out on the properties with the cattle and picking crops.  I had no fear when I was young. Though it usually taps me out pretty quick. 

Dreams and Future

I want to combine all my skills to be able to help others like myself and people with ID to change their lives for the better through advocacy and creative pursuits. 

Every person matters, but we can only change ourselves,  we all need to take personal responsibility for our actions.  This creates respect, we all need to take on the responsibility of ourselves to create and empower change through the people we love.  Without that respect and love – life wouldn’t be worth living.  If every person did that – we wouldn’t need places to advocate for fundamental rights and respect.  Because everyone would just to do it.  Yes it’s hard to do but if everyone looked within themselves and treated others the way they wanted to be treated,  we would have a world that was accepting of every person.  And that is the ultimate dream and goal of all.

We are actually all fighting for the same thing, we just have to remember – every person is that, a person.  No one is perfect and if we all showed this, yes, accepting that life is hard for everyone, then eyes would be open to what truly matters. Love and respect = acceptance and trust.

Worries

Please don’t go that down that rabbit hole, when you live with Anxiety and ID its so easy to focus on worries and then it spins out of control.  I prefer to notice the worry, then distract myself with fidgets or something grounding and then slowly resolve the concern through supported therapy.

How do I handle stress?

That’s one of the major things I want to see change. Stress, it’s a hallmark on everyone’s health.  I have learnt the hard way of dealing with stress.  Keeping it bottled up and not talking about eats away at you.  But people need to feel like they won’t be judged or labelled. Only then can they start to be able to resolve their issues. It really depends on the levels of stress.  I have my usuals that most typical people use:

• Getting outside
• Listening  and or singing to music
• Doing something creative – Designing, art, sewing – grounding myself through touch – fabric has always talked to me.
• Watching a favorite movie
• Through therapy both physical and mental I have learnt to take a break and slowly confront the challenge in a safe supportive space.  

I wouldn’t be the person I am without my new team of doctor’s and specialists.  I have finally accepted my capabilities and challenges. And am living a more healthy life for myself and my family. No one can help you achieve inner peace and good health but yourself.  Stand up for your rights – your health matters. 

The world would be a boring place if we were all treated the same.  A person with Down Syndrome and more broadly Intellectual Disability is as unique as everyone else. Every person is different just like a fingerprint.  If every person truly actively listened to each other with their own communication styles and used language appropriately, people’s lives would improve for the better.  #inculsioninhealthmatters - it all starts with health.