I am Most Extraordinary
October is Down Syndrome awareness month mamas and is therefore the perfect time for us to introduce you to the amazing work of one our Sassy photographer’s – Steph – and her wonderful, Most Extraordinary, daughter Ruby. Steph chatted to us about her family and what it’s like raising a child with Down Syndrome in Dubai – and also about her incredible mission to bridge the gap between the community and the families of special people. From highlighting beauty in difference to tackling issues like financial burden on families of special people plus marital issues and impact on siblings – this is all about Ruby and about Steph’s awe inspiring ‘I am ME‘ project.
Can you tell us about your family?
I am originally Canadian and met my husband James (from NZ) while working in Saudi Arabia. We then married, and had our first daughter Olivia (now 14) in Riyadh, followed by Ruby (now 9) in Abu Dhabi, and Lily (6 years old) in Dubai. Ruby was born with Down Syndrome in 2006. This was a huge turning point in our lives brining so many blessings and challenges all at the same time. Our family is a pretty strong family unit, although you won’t find the white picket fences around our home, we like to keep it real!
What does ‘I am Me’ mean?
I am ME stands for I am “Most Extraordinary”
What made you decide to launch ‘I am Me’ and what do you hope to achieve?
Ruby was born in the UAE, but started out her schooling in New Zealand. She attended mainstream school and did really well. Once we moved back to Dubai, it was very clear straight away that there were many challenges in even getting a foot in the door to most schools here. I had upwards of 40 rejections in total (from initial phone calls all the way up to going all the way through the assessment). It was heart breaking.
It is very difficult to describe the feeling when you are told on the other end of the phone “I’m sorry, we’ve never had one of those before”, or “We don’t have facilities for people like this”.
I was shocked, hurt, dumbfounded, and angry at the responses I got. Yes, it’s true there were schools who were inclusive at that time, but they were few and far between and tended to be full with waiting lists so it wasn’t an option for us at that time. I am a photographer and a writer (among other things), and the only way I knew how to articulate what I was feeling was to reach out on Social Media. I started a little Facebook post called “Don’t Bring ME Down” which had a compelling photograph of Ruby and a little verse I wrote trying to show the common bond between her and any other kid in mainstream school. I had visions for a project under the same name, along with a short film to be made.
I met with a local filmmaker, we tried a few things but it just didn’t work how we envisioned it so the project ended up on the shelf. It has been whispering in my ear ever since and even moreso lately as I listen to story after story from hurt parents about the lack of inclusion in our Dubai schools. Of course this is only one issue, and since that time a few years ago, many other issues have come to my attention. I recently completed a small online photography course with a mentor of mine where I examined my feelings about Ruby. Within that course, the voice for this project became even stronger with the other participants encouraging me to finally bring this project to life.
A while back I was walking on the beach and I had the clearest voice in my head say “When you get the courage to launch this project, you need to call it “I am ME (most extraordinary)”.
I jotted it down in my phone, came home started a FB page and then let it sit dormant for 6 months! Recently with the encouragement of my photography peers, I decided to hit the “publish” button on the FB page and within less than 48 hours the page had over 1000 likes and the post engagement was huge. One post reached 47,000 people within the space of a few hours!
This was a sign that this project is important and that I have a responsibility as part of my life purpose to fulfil it.
The objective of “I am ME (most extraordinary)” is to bridge the gap between the community and the families of special people. We will look at many different issues on the page from highlighting beauty in difference, to tackling issues like financial burden on families of special people, marital issues, and impact on siblings. I have many plans for it, including a huge multi media exhibition to be held in October of next year including video, documentary style photography, and live actors to help tell these amazing stories. So far the response has been amazing, and I look fwd to the amazing connections it will bring.
What’s it like to be a parent or carer of a child with down syndrome in Dubai?
First and foremost I think it’s important to address the fact that our role as parents is pretty much the same no matter what condition our children have. Second of all, I will add that being to a parent of a child with Down Syndrome definitely has it’s challenges. Of course every child is different, but in general there are often issues that we all share in common, and raising a child with DS in Dubai has it’s additional challenges that we would not have to worry about in our native countries.
Is there much support?
Within the hospital environment, I would say there is a lot of work to be done. Educating hospital staff in the language they use and how they treat a new mother is paramount. A lot of information that is given to a new mother is very out of date and antiquated. The educational system doesn’t fare much better in terms of not having a consistent model that schools can look up to, be trained, and continuously updated on the newest advances in helping our children reach their potential. Again, much education needs to be done in order to achieve a more modern and realistic perspective of what having a child with Down Syndrome looks like in today’s world.
There are so many inspirational people out there doing amazing things with Down syndrome.
Karen Gaffney is one such inspirational lady. She has Down Syndrome and has swum the English Channel, as well as having her own foundation to raise awareness. I don’t know about you, but I can’t swim the English Channel! Again, it’s all down to awareness and highlighting people for their potential. As far as support groups go, we are lucky to have All 4 Down Syndrome which was started by Rebecca Corley about 10 years ago. The best support that we have found is in connecting with other families with children with Down Syndrome.
What are the hardest and the best parts about having a child with down syndrome?
I can only speak from our own experiences, but I would say the hardest part for us has been that in many ways it has been relentless in terms of our daughter being very active and us having to always lock every door in the house so that she doesn’t escape, or grab a butcher knife (which happened last week btw). We lock Ruby in her room at night, and every time I turn the key I feel completely torn in knowing that she is safe, and then feeling guilty that I lock my child in her own bedroom at night.
For James and I it’s been an ongoing battle of who gets to relax, or in the old days before the door was locked it was the frequent interceptions in the hallway at night when she would get up repeatedly. I know people are going to say “That’s common with any kid” but I beg to differ. I have 2 other children, and although we’ve been up with them at night, this is whole different ballgame. There have been numerous other challenges, but it is really important to emphasise that the joy we experience with Ruby far outweighs those moments.
Ruby is a constant source of inspiration in how she deals with people and treats them.
She is very open and will easily approach most people with the most genuine respect. Her willingness to be completely and utterly 100% real all of the time teaches us that it is ok to do the same. Many of us walk around wearing the mask that we’ve been conditioned to wear, and it is through Ruby’s teachings that I have learned how to slowly overcome that. My personal growth has skyrocketed since going on this journey with Ruby. I still have so much to learn, and I feel blessed that I get to be her mother.
You mentioned that you’d like to educate people on how to speak and engage with someone with down syndrome – we’d love to know more about this – what would your top tips be?
There are many things people say without thinking that impact on our children with DS. People have good intentions, but it is important to realise that your word is your wand. Whatever you think and say always bears and impact, so it is really important to be mindful of the language we use when speaking about kids with DS (and other challenges that other special kids face).
For instance, I often hear people say “Down’s Kid” or “She is a Down Syndrome”. First of all this is incorrect as the condition is Down Syndrome, and not “Down’s “. The condition was named after Dr John Langdon Down who in 1886 was the first to describe the features and symptoms and notice the similarities in our beautiful children. An easy way to remember this is to think “child first” “condition second”. So, you wouldn’t say “OH look! There is a little glasses girl!”. It’s the same thing here, you could say “Stephanie and James have a little girl with Down Syndrome”.
Child first. Condition second.
There have been massive campaigns in the USA to stop the use of the word “retard” and “retarded”. The campaign is called “Spread the Word to End the Word” and has a very passionate following. It took me a while to really feel the impact of this as living in Canada as a child this was a saying we would use to describe something “silly” or “stupid” we had done. We would say “Oh, that’s so retarded”, or “I can’t believe I did that, I”m so retarded”. I guess the best thing to ask yourself is “Is using this word necessary?”, or can we come up with a better word to use that doesn’t offend an entire demographic of people using old language that is demeaning. Another thing I think is crucial to mention that our kids really are individuals. I don’t know how many people say “Oh, kids with DS are so, so happy!”, or “Oh wow, don’t they just love music?” Well I think you’ll find that we all love music, right? So, again the key here is to look beyond the label and really see what lies beneath the surface. My top tip would be to really try and listen to the language you use to describe yourself and others. Down Syndrome aside, our words shape our realities so it’s really important to notice what we say is not detrimental to others. (steps off soapbox).
How does having down syndrome impact Ruby’s life and also you/your husband and Ruby’s siblings?
Ruby struggles with many things including having lower muscle tone in the facial muscles which makes her speech more difficult. She also has difficulties with mastering fine motor skills, things such a doing up her buttons on her shirt, or tying her shoes seems very challenging for her. Ruby also seems to tire more easily than the other kids when we are being active. Of course there are issues such as processing delay, and it is clear that it is difficult for her to articulate her feelings verbally.
The impact on James and I has been challenging.
We have had such extreme highs and lows.
There are many things we think about that other families don’t have to consider which at times can be stressful. Being a parent of a child with Special Needs can be incredibly lonely, despite having a partner as you are constantly navigating your way through your own coping mechanisms. James and I have gone through marriage counselling which has been invaluable to us. WE have become a much stronger unit because of it, despite others not always understanding. A friend of my husband’s told him that he couldn’t believe that I would be so open talking about our challenges, but my reply to that would be that “What is there to be gained by keeping things in the closet?” We are in the year 2015, and it is my hope that I am ME can help bring some of these issues to light and start helping people who need the support, whether it be marital, or for siblings. Ruby’s sisters are great girls, and I have to say I can mostly only see the positive impact that this has had on them. They are both compassionate, caring, and responsible young girls. We have started to consider taking a holiday with just the 2 girls and sending Ruby to camp. It can be really full on and non stop, so it’s really important that Olivia and Lily get their time with us without the constant circus.
How do you cope with really tough days?
I am not so sure that I cope, but rather I get through. Coping to me seems like you are doing ok, and sometimes I really feel like I am not doing ok. Having the support of friends in Dubai has been the biggest lifesaver so it’s always good to know we can give them a call and head to a beach or park to get a change of scenery when we’ve all had enough of Ruby’s antics!!!
What are your future hopes for Ruby and other children with down syndrome in Dubai and worldwide?
My hope for Ruby and other children with DS is simple. To be seen, heard, nurtured, and LOVED equally. It really is that simple. Oh, and to not put limitations, labels, or boundaries on their abilities.
What would you like people to know about Ruby?
Ruby is incredibly intelligent. Her emotional intelligence is far above any of us in that she can sense and feel what others are going through on a daily basis. She is a sage, a healer, and a teacher to all that come in contact with her. Don’t ever think for a second when she is doing something out of turn that she doesn’t know it’s wrong. It’s always a test pushing you out of your comfort zone. Ruby knows how to push people out of their comfort zones, but then all the best champions are made that way!
Ruby is LOVE, and Ruby is LIGHT.
What advice would you give to any mamas in a similar situation?
I’m not sure I’m in a position to give advice as I”m still learning, but what I will say is get out and connect with people. Get to know other moms, both with and without children with DS. Get your child involved in as many activities as your schedule will allow. The social skills they learn from just watching are beyond priceless.
Don’t read too much of the outdated medical jargon on DS. Watch, observe, and listen to your own child, and then get out and ask other Moms who may have more experience than you. When it comes to applying to schools, document EVERYTHING. What school you applied to, who you spoke to, how much you paid, whether you got a yes or no. Never, never give up when it comes to securing a place for your child in school. Don’t be afraid to question your Dr or teacher when it comes to dealing with your child. They may have the best intentions for your child, but they do not always have the answers, and it is up to us to advocate and be the voice for our children until they are able to do so for themselves.
Oh, and number one tip???? Don’t forget to BREATHE………