Hello, my name is Helen and I have a son called Oliver, who is five years old and has Down syndrome. We live in Melbourne, Australia. Oliver is currently at kinder and will be starting school next year, which is both exciting and terrifying in equal measure; he will no doubt just go with the flow of it all, as he usually does, whilst I navigate behind the scenes, trying to smooth out the ripples of the bigger pond, that my little duckling will be swimming in. Whilst Oliver tests the water, I will be applying my skills as a Naturopath, writer and educator to the Three 21 Wellness Foundation, a project I founded in 2015, which provides information regarding natural therapies for children with Down syndrome. www.three21wellness.org
Welcome beautiful Helen & Oliver
Natalie: Having a child with a diagnosis, condition or disability can be life changing. How did your special needs journey begin? What was going on through your heart and mind when you first found out?
Helen: Oliver was born at home, after a very healthy, full term pregnancy. Shortly after birth, the midwife was checking through the newborn reflexes and I could tell that something wasn’t right. She didn’t say anything at the time, instead, she left us to sleep in exhausted ignorant bliss.
It wasn’t until the second day that she gently and respectfully talked to us about the possibility that Oliver had Down syndrome. My very first thoughts were “Oh for fucks sake”. Apologies for the profanity but it’s true.
Life for me up until that point had been filled with endless curve balls and challenges, including five failed pregnancies before Ollie came along. I honestly couldn’t believe that I’d been handed another mountain to climb, it was almost laughable, hence the statement.
The first words out of my mouth were quite different to my internal dialogue. After digesting the news, feeling my heart pound in my chest, my head fill with heat and tension, I finally said, “well whether he does or he doesn’t we’re all he’s got, so we had better just get on with looking after him” and so we did and so we have.
A blood test confirmed Trisomy 21 two weeks later.
Natalie: What is the name of the condition that Oliver has? Can you share with us a little more about it? What are your greatest worries and greatest wishes & hopes for Oliver?
Helen: I won’t go into detail about what Down syndrome means biochemically; let’s just say that Oliver has an extra copy of the 21st chromosome, which influences every cell in his body and his health both physically and cognitively. Common issue children experiences include hypothyroidism, digestive and respiratory problems, low tone, heart defects, delayed speech and learning challenges, with a high risk of Alzheimer’s disease and a pre-disposition for Leukemia. A child with Down syndrome needs to be taught repetitively, in all areas of development.
There are some pretty strong perceptions that are attached to children and adults who have Down syndrome, such as “they” are so loving, have been born to heal people and are so happy. Whether that be true or not for the individual, I think these stereotypes often overshadow and diminish the challenges associated with this condition for the mother in the eyes of others.
As for my worries and wishes well, Oliver doesn’t have any siblings and he struggles to make friends at this point in time, due to speech delay and a difficulty in understanding social cues. I know these challenges are just in the now but I guess they trigger my deepest fear for him, which is he will feel lonely in life.
My desire for Oliver is that he’s at peace with himself, that he feels comfortable and supported enough to take things at his own pace and in his own way and that he has enough self-confidence and esteem to tackle obstacles in life in order to achieve his dreams.
Natalie: What are some lessons and blessings you have learnt since becoming Oliver’s mum?
Helen: I have leant so many things it’s hard to condense them into a few sentences but I will try. In the five short years since Oliver came into my life I’ve discovered that I’m more resilient and capable than I ever imagined possible. I no longer sweat the small stuff in life and don’t take as much shit from people as I once did. I’ve finally managed to heal the past, something that only the love of a child can do, as the sear over my bruised and broken heart has been stripped away.
Natalie: It can be extremely isolating for a Mother going through this journey, family and friends can often struggle with how best to respond. Do you have any advice?
Helen: I think my advice would be to work on accepting the things we cannot change and then challenge those around us who are struggling to do the same.
Great peace, joy and support can come from this approach and doing so helps us make the best choices for our child and family, when it comes to keeping our expectations reasonable and addressing the things we can do something about.
Life is so often set up as on a rewards system, a hierarchy of achievement and that model simply doesn’t serve the special needs community, both child and parent alike. What’s the point of trying to keep up with that? It just leaves us feeling at the bottom of the mountain again and again, needing more and more people behind us shouting words of encouragement.
We need to shift our perception from this model and look towards acceptance of our own limitations and out child’s. If we try and “keep up” with another, we fail to accept the reality of our different circumstance and put ourselves under tremendous strain, possibly missing out on discovering the personality, ability and strengths of our children.
Natalie: I’m passionate about the special needs and self care connection. The special needs journey can bring some big challenges. How do you fill your cup? Are there any self care practices that have helped you on your journey?
Helen: Being a Naturopath, I’ve long been a fan of complementary therapies and remedies for ailments both physical and emotional in nature. However, much to my distress, I found myself in such a desperate state of insomnia and anxiety at one point, nothing from the natural world was helping and I turned towards pharmaceutical medication to help get me through a rough patch. I was very ashamed of this at the time and felt like a complete failure as a professional but I feel it’s important to share this part of my story and not pretend it didn’t happen.
I eat well, always three good meals a day and the best quality produce I can find. It takes time to cook and sometimes it’s a drag but for me it’s as essential as making the bed in the morning for keeping my head and body in line. I also see an acupuncturist on a regular basis, take herbs for adrenal, nervous system and immune support and receive reiki healings in order to connect back to the essence of Helen, which has helped me get back from a place of anguish and despair and provides me with clarity of mind, a peaceful heart and relaxed body.
Natalie: What pearls of wisdom do you want to share most with Mum’s who are at the beginning of their special needs journey?
Helen: Fear, necessity and love are three very powerful motivators. Make friends with the fear, get creative with the necessities and focus plenty of love towards your own heart.
Natalie: Do you have a favourite nourishing recipe you would like to share?
Helen: Dahl and rice, the perfect healing food for when you’re tired, emotional or stressed and you need an internal hug.
1 tablespoon of coconut oil
1 brown onion
2 cloves of garlic, crushed
1tablespoon of mild curry powder
1 cup dried red lentils, rinsed and drained
1 cm piece of fresh ginger, grated
½ cup coconut milk
3 ½ cups of chicken or vegetable stock
70g baby spinach
½ cup fresh coriander leaves
1. Add oil to a warmed saucepan over a medium heat. Cook the onion for 8-10 minutes or until it’s tender. Add the garlic and curry powder. Cook for 2 minutes until it’s fragrant.
2. Add the lentils, ginger, coconut milk and stock. Bring to the boil. Reduce the heat to low. Simmer, partially covered, for 30 minutes or until lentils have softened. Cook, uncovered, stirring occasionally, for 20 to 30 minutes or until thickened. Remove from heat. Stir in spinach and serve warm with coriander and rice.
Natalie: Do you have a favourite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Helen: “When you know better, you do better” Maya Angelou.
Natalie: Thank you Helen for sharing your journey with us, it’s an absolute honour. Oliver is such an incredible soul and he is so lucky to have you help him achieve so much and on so many levels! You are inspirational with the work you do via the Three 21 Foundation. I am thankful for the love & support you have provided to our family since Chiara was diagnosed. You were the first Mum I connected with in those early dark post-diagnosis days and I am grateful for the deep wisdom you have share to so many.
“I’ve discovered that I’m more resilient and capable than I ever imagined possible. I no longer sweat the small stuff in life and don’t take as much shit from people as I once did. I’ve finally managed to heal the past, something that only the love of a child can do, as the sear over my bruised and broken heart has been stripped away” – Helen.
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