My unexpected journey and the lessons my son with Down Syndrome has taught me

By Julie Fisher

It had always been a dream of mine to write a book since I was in high school. The topic for the book came many years later after the arrival of our third son, Darcy.

Darcy has Down Syndrome and the book he inspired me to write is my story about our journey with this beautiful little man; his diagnosis, trying to prepare for what lay ahead, complications and many of the wonderful things Darcy has done and continues to do which promote inclusion and acceptance.

There are moments in life that don’t go exactly according to plan, and Darcy and his diagnosis was one of them.

This tiny baby introduced us to a world we never expected or knew existed; a world which can be heartbreaking but is full of amazing people who teach us valuable lessons every day without any judgement toward others.

Sometimes the lessons are easy, sometimes hard; everyone’s stories are different.

Rather than concentrating on the perceived negatives of our son’s diagnosis, we made a conscious decision to focus on the beauty of every experience. Darcy is a son and a brother, and we want the best for him, so we try our hardest to ensure he can shine to his fullest potential.

When Darcy was born, his brothers Caleb and Blake were well entrenched in their basketball, football and swimming programs and Darcy came to everything; training sessions, games and many other things the boys were part of. Their friends embraced Darcy just like they would any other of their friends’ siblings. Because of this, Darcy has never known anything but to be included and accepted just like everyone else.

As Darcy grew older, he started to show an interest in football, basketball and he has always loved song and dance. So, without giving it a second thought, we started enrolling him into programs where he could shine.

He enjoys BAM Arts Inc dancing, he has participated in Auskick at our local clinic for the last 6 years and he also enjoys Special Olympics Basketball. More recently he has started a regular bowling competition and has improved so quickly.

Darcy also enjoys the movies, theatre and concerts and we have always tried to make it possible for him to attend the events he loves. I don’t hold him back from doing anything he loves. If we come across any negative issues with people I either try to ignore it or just push past with a slight comment just to let them know we did actually notice. I then just keep going with whatever it is we are doing and make sure Darcy gets the best experience he can.

He is not afraid to show exactly how he is feeling and loves making people laugh and smile.

I hope some of our experiences can help people to embrace the beauty of disability and difference in people. I hope it helps people to look at everyone individually and not at what they can or cannot do.

Darcy may have a disability, but it doesn’t define him. He has the same feelings, wants and needs as everyone else. Every child is different; every person is different. Never give up! Every child is a blessing, and we should do whatever we can for them.

They deserve it.

Here are 10 things Darcy has taught me…..

Never give up or underestimate anyone

When we look at someone and see a disability, we sometimes automatically assume they will have trouble doing and achieving certain things. I’ve learned with Darcy, that given a chance, people can achieve just as much as anyone else. It’s very much like ‘don’t judge a book by its cover’…you never know what someone is capable of.

Dance like nobody is watching, sing like nobody is listening

Darcy absolutely loves music and dancing and this saying is perfect for him. I love the way, when a song comes on that he loves, he doesn’t even think about who is around and who is watching or listening. He just goes right ahead and belts out the tune and dances along. I think we should all be a bit more like this and enjoy whatever it is we love without worrying about what people think.

Fight for what you believe in

If there is something our children, or even just people in our lives, want to do, we make sure they have every chance to do so. With Darcy, I have had to fight sometimes for people to give him a chance. With the fighting, he proved me right and showed that people should open their minds and give things a chance. Each time we fought for him to do something, he accomplished it and showed people what he was capable of.

Make every moment count

You never know what lays around the corner. Anything can happen at any time. Enjoy every moment with your family and loved ones and make sure everyone gets to enjoy and relish in opportunities.

Focus on abilities

It’s very easy to look at what people cannot do. Darcy has taught me to look past those things and focus on what he can do. The disability soon disappears and it’s amazing how quickly you enjoy all the ability that is there. People reach milestones, etc, at different times. People are good at different things. Darcy has taught me to focus on what he can do and never give up on teaching new skills.

Celebrate the successes

We should always make sure we celebrate all things achieved; even the little accomplishments can be huge. Darcy is so proud of himself when he achieves something new, no matter what it is. It may be something very small to someone else, but to him it’s something to be very happy about. So, we need to focus on celebrating all success and keep helping to achieve this.

Give every opportunity

Whatever Darcy shows interest in, we try to make sure he has the opportunity to give it a go. He grew up watching his brothers play basketball every week. He loved going to watch and seemed to really enjoy it. As he grew, we talked to him about one day playing and we could see how eager he was to try. We have given him the opportunity with Special Olympics to do basketball and he does indeed love the sport. His skills have improved so much, so quickly. He has also done the same with bowling. He now bowls in a special league competition and the improvement he has shown has come about so quickly. So, if your children show an interest in something, give them the opportunity to try. Don’t just blow it over. Let them see if they do enjoy it.

Encourage inclusion and acceptance

It is extremely important to us for Darcy to be included in many things to give him every opportunity to become as independent as possible. For this to happen, people need to be included and accepted. When this happens, it’s amazing to see how quickly they blossom and enjoy what they are doing. Everything can be made to be like this. Sometimes you just have to think outside the box a little to change something ever so slightly for inclusion to happen. Sometimes, bigger changes need to be made, but that doesn’t matter. When Darcy is made to feel comfortable in what he is trying, it’s amazing to see how quickly he then learns.

Include family in every success

With social media, this is even more easy to do. Whenever we achieve something, we all like to be praised and shown that our family is proud of us. People with disabilities are no different. I think it’s very important to do this with all of our children. When I tell Darcy’s grandparents or any other relative something he has done well, when they praise him and say how proud they are of him, he loves it. He understands exactly what is going on. And like anyone getting shown pride from people they love, encourages them to keep going and keep trying to do their best.

Embrace individuality

Nobody is the same. We are all individuals and we all like different things and are all good at different things. It’s so important to embrace this with anyone. This is when people shine at what they are good at and what they love to do. People with disabilities are no different. Embrace what they are good at and let them shine.

Visit Julie’s blog to read more about her family’s journey and her book here.