What It Means to Have a Sister with Down Syndrome
My sister has Down syndrome and she is the most wonderful gift to me and my life. Having a sister with Down syndrome has brought its share of challenges and I have definitely felt those over the years, but then again, isn’t that true of any sibling relationship? Below are 8 of the life lessons that my sister has taught me as well as a free children’s book to help you talk to children about Down syndrome.
If you are looking for a children’s story to help unpack what it means to have a sibling with Down syndrome and explain what Down syndrome is, my debut children’s book entitled “The Fantastic Chromo Powers” just might help.
8 Lessons Learned From My Sister with Down Syndrome
These are just a few of the lessons my little sister taught me about life and seeing the glass half full so to speak… but they definitely don’t end here…
Seeing What Is Vs. What is Not
It’s interesting how in some ways, as I have written and spoken about with regards to the negativity bias, negativity can certainly, in many scenarios, have a firm grip on me. However, when it comes to anything that has to do with my sister, it is always from the “Glass is Half Full” standpoint. It’s funny how different life scenarios can bring out the best or the worst in us. My little sister has definitely been the part of my life that has helped me rise above and see all that life has to offer rather than what it has taken away.
The Power of a Hug
Kids, people with Down syndrome are often thought of as being very loveable and hug friendly :). And this has definitely been the case with my sister. She may not always have the words to express her thoughts and ideas but she always knows just how to communicate her support, love, and respect. What she lacks in words she makes up for in gestures of the heart.
The Value of Hard Work
My little sister is one of the hardest workers I know. She has a day job and before COVID struck, had 3-4 outside activities that she attended and was involved with on a weekly basis. She is active, athletic, and loves loves loves her movies and music! She is super busy and thrives on activity! As busy as I sometimes feel, she puts me to shame! And on top of her many activities, she is always there to help with the housework along the way.
And not only is this true, but she keeps everyone in our family on our toes and in check… ensuring that we are not forgetting anything critical when leaving the house… she has definitely been known to save more than just one of us from a forgetful moment or two!
Independence
My little sister waits for no one! And if she needs help she isn’t afraid to ask for it, which then helps her the next time around as she will be able to do it on her own. My little sister’s routine includes a wake-up time between 5:30 and 6 am daily, making her lunch, and getting herself up and out in the morning with little to no help! She is super independent around maintaining her room and doing her laundry, she will prepare herself meals as needed and has even taken on the role of helping out my parents with some of the responsibilities around the house, least of all keeping them in check 😉
How to Have Fun
My sister takes this to a whole new meaning! She astounds me with her craftiness, today and when we were kids… oh the stories we can tell… I love her sense of humor, super sarcastic and witty in ways you would not believe. She helps me to not take life too seriously, to laugh, and to have fun along the way, even in the 90-degree heat and 80% humidity, while waiting for a train in the hot sun… she will put a smile on your face and you will be overcome with that gratitude for what the moment has to offer.
Just Gotta Try
This is one of her catchphrases, if my little sister is a little unsure of something or encouraging someone with an attempt at something new, she will remind us (and herself) to “just give it a try”. It is said in that way, that reminds you that very often we have more to lose by not doing something rather than giving it that “try” …. “give it a try, what do you have to lose?”
She can be a little fearless in some aspects, though she also knows her limits and will hang back when she needs to. But she encourages with her sweet smile and willingness to be there to see you through your “try”.
Judgement Free Zone
When it comes to my sister, there is no judgment. There are very few people in the world that are truly free from this human burden and my sister is one of them! I love this about her, in my hardest days, when I was filled with shame and regret, the only person I could bear to see and be with was my little sister. I knew that no matter what, she had my back, and it’s not that others did not, but it was just different, maybe a little more pure? She was a big part of my motivation to figure things out and move on with my life, that there was a lot to live for and she was a huge part of that!
Patience Doesn’t have to be Hard
When it comes to my sister, there is no limit to patience for me… she has taught me the value of taking time to figure things out and the room to wait it out, no matter how long it took or takes. Patience is hard to come by at times, for me and for many. The quick-paced modern life does not leave a lot of space for waiting things out, or so we think… My little sister teaches me and reminds me that it’s ok, once again allowing the better version of myself to shine. This is not just true for me, but I know many around her feel this same way…. patience come easy when it comes to my sister
How to Talk to Children about Down Syndrome
Explaining to children what it means to have Down syndrome can be challenging. If you are a parent, grandparent, caretaker, or teacher that is looking to explain to your children what it means to have Down syndrome then my children’s story, “The Fantastic Chromo Powers” will help.
Talking to children about life changes and challenges is an area where many parents look for help and guidance, which naturally, makes you a good parent, grandparent, or teacher! You want to ensure that this information is shared with sensitivity and honesty as well as being mindful about the way in which the news is received while being prepared for a variety of different reactions from children. One of the highlights of my children’s story is the way in which two young sisters adapt and embrace the challenge of loving their sister with Down syndrome.
Language Matters
The key to thinking about any differences we have in our abilities is that they are simply that, different, not better nor worse, just different. The language has changed and evolved dramatically over the years, for the better I will say. Today we work to be inclusive and aim to use person-first language, (meaning that we speak to the person rather than the “disability”), even the word “disability” can be reframed as “differently-abled” indicating that there is a difference in ability, but again, without judgment that it is better or less.
Keeping these tips in mind around language will help to dispel the stereotypes and biases that people with Down syndrome are lacking in some way, cause as you saw from my life lessons above, that is hardly the case! What my sister has brought to me and my life, although different than the traditional life path, is a world of wealth in life experience. Language and how it is used is an essential piece to reinforcing a positive and hopeful message to young children. A message that says people with Down syndrome are pretty freaking awesome!
Wherever you are in your journey around Down syndrome, “The Fantastic Chromo Powers” will be key in your research and offers, what I hope will be a fun twist on the powers that lie in the chromosome.
My new children’s book available for free download below will hit on the following three points as depicted below.
Summing It Up
I hope you found value in reading this article and I hope your journey in the world of Down syndrome is and has been as enriching as my own. There are times when it is hard, but remember that life is hard no matter how you slice it. This is why we are here to lean on each other, helping to make the most of what we have. Maybe the person with Down syndrome in your life has also brought that refreshing perspective to your life as well!?
If your life has been touched by Down syndrome, please leave a comment or two below, and share this article with your networks, your friends, and family who might need a fresh way to think about life and all its many splendors! 😀
Stay tuned for more adventures from Chromo Girl and her many varied sidekicks!!
