Mother shares son’s story to raise awareness of Down syndrome
In the lead up to World Down Syndrome Day, a Brisbane mother shares the story of her young son — “an absolute fighter” who is always smiling.
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THIS Thursday, March 21 is World Down Syndrome Day.
To mark the occasion, Bracken Ridge mother Sarah Schneider writes about her shock when her second child was diagnosed with Down syndrome and her pride in a little boy who has overcome tough times, who is always happy and smiling.
By SARAH SCHNEIDER
JAMES Schneider-Pattison celebrated his fifth birthday in February this year and what an extraordinary five years it has been. James was born with Trisomy 21, more commonly known as Down syndrome.
He was four weeks premature, weighing 3lb 11oz (1672g) and had to stay in the hospital’s special care unit until his actual due date. However when James was only a couple weeks old the doctors asked if they could perform some tests.
A few days later we were told our beautiful little baby boy had Down syndrome. What a complete shock. I was so scared and had absolutely no clue what it meant for James or what it was going to bring for him, or our family in the future.
He was also diagnosed with congenital heart disease. For James this meant he had two holes, one in the top chamber of his heart (quite common to those with Down syndrome) and one in the bottom chamber.
At only 12 weeks old, James had to have emergency open heart surgery to repair an 8mm Ventricular Septal Defect; this defect was due to an abnormal connection (hole) between the lower chambers of his heart. James was in hospital for two and a half months for this surgery.
After open heart surgery James was diagnosed with Pulmonary Aspiration, a condition in which food, liquids, saliva or vomit is breathed into the airways. For James this meant anything he tried to drink or eat was going straight into his lungs — potentially drowning himself. James was then fed via a nasogastric tube for a few months before a feeding tube was inserted into his stomach. The tube is held in place by means of an inflatable balloon and a low-profile external bolster. It’s still in place today.
James has also been diagnosed with congenital hypothyroidism and significant tracheomalacia.
James has been through very tough times and still continues to show me and the world — through his love, strength and diversity — that he is an absolute fighter.
Here is a little boy who is always happy and always smiling. His brave, strong, courageous nature always shines above his worries and woes.
James only says a few words and has limited communication with others, so I am teaching him basic Auslan sign language at home to help him talk to his friends and communicate his needs better. I watch him at times get frustrated with himself because he cannot communicate his point across.
So I thought, well if my son can’t say it (yet) then I will say it for him. I will be his voice, so here I am. I want to raise awareness for my son and all people with Down syndrome. Equal rights and inclusion in society, just as they deserve.
As his mum I believe people with Down syndrome must be able to enjoy full and equal rights as other children and adults do. This includes the opportunity to participate fully in their schools and communities.
When children with Down syndrome and other disabilities are given opportunities to participate, all children benefit from the shared environment of friendship, acceptance and respect for everyone, and that’s when high expectations are created.
These environments prepare all today’s children for life as tomorrow’s adults, enabling adults with Down syndrome to live, work, and participate, with confidence and individual autonomy, fully included in society alongside their friends and peers.
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In all honesty I was struggling in the decision on whether to send him to school yet. I thought my little guy can’t even talk, how could he possibly go to school? How will his teachers know what he is trying to say to them?
I came to the conclusion, with absolutely no doubt in my mind, that he should go to a state school and be placed in a regular classroom, giving him the best possible chance at mainstream schooling just like his sister, and his little brother Jayden next year. Why should he not have the same educational rights as his siblings.
This is where a massive thank you must go out to the principal, deputy principal, teachers, inclusion teachers, staff and students at Bracken Ridge State School for their true compassion and for kindly welcoming James into their school community.
A very special thank you to Miss Tavake for taking Auslan lessons (in her own time) and Ms Firth, Mrs Mills and Mrs Osbourne for learning how to operate James’ feeding machine. High five ladies, well done.
Not only has the school put my worries and concerns about James starting Prep mainstream to rest, they have also exceeded my expectations. They have ensured James has everything he needs physically and emotionally to be the very best possible person/student he can be.
I have seen a beautiful little twinkle in James’ eyes since he has started school. He really enjoys putting on his uniform in the mornings and he practically runs out the door to begin his day. He stops in our garden to actually smell the flowers or pick a strawberry for his brother and sister to eat, then sings in the car the whole way to school.
He loves going to school to see his teachers and play with his friends. He is so much more confident since he has started school. James likes to give everyone high fives and he will always wave and say “bye” to everyone he passes.
I am so proud of him and it gives me great pleasure to say the school is supporting James for the upcoming World Down Syndrome Day, celebrated on March 21 every year.
The school is holding a Lots of Socks day on Friday, March 22 and, for a gold coin donation, all children are allowed to wear their craziest socks to school, with all proceeds going to Down Syndrome Queensland.
I put a personal challenge out to the local community. On Thursday, March 21 please wear crazy socks to school, work or shopping. Wear them loud and wear them proud and when somebody says “why do you have crazy socks on?” you can answer because I support James and World Down Syndrome Day.
Let’s start the conversation.
A LETTER TO MY SON
Dear James,
Thank you for being so amazing. Even after the worst of days, I see your beautiful smile and I know there’s so much more to this life. You have touched so many lives already and you will continue to be a positive influence in our community.
James, you make me laugh and you have also taught me what “life to the full” truly looks like.
To you James, everything is “perfect”. However having you as my son is what I call perfect.
I have learnt that an extra chromosome is not a disadvantage, that extra chromosome has given me an EXTRAordinary son and I am very proud of you James and I am truly fortunate to be your mum. And I will be forever grateful.
You bring joy to every single person lucky enough to be in your life. You are a true blessing.
Love you to the stars and back.
Love always and forever,
Mummy
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