The Upside of Down’s
Down syndrome is a well-known and prevalent medical diagnosis. Many people already know that it is a chromosomal anomaly that occurs in about 6000 babies per year. When a child is born with an extra copy of chromosome 21, the resulting condition is Down Syndrome or Trisomy (meaning extra copy) 21. Children with Down Syndrome are predisposed to a variety of other medical conditions such as congenital heart defect (CHD), Herschsprung’s Disease, hearing loss, obstructive sleep apnea, ear infections, eye disease, and other conditions.
Some people may or may not know that it was named after an English physician John Langdon Down who characterized the condition in 1866. It was later discovered in 1959, by a French physician, Jerome Lejeune, that Down Syndrome was a chromosomal condition.
As a speech-language pathologist with over 30 years experience, I have been given the privilege of working with many children with Down Syndrome. While this chromosomal condition carries with it its own set of challenges, in my experience it also carries with it an amazing set of characteristics that are nothing short of admirable and awe-inspiring. My experiences come from a therapeutic perspective. And while I derive great enjoyment from working with these friends, you may enjoy hearing more from the mouths of those who have been there. Read on to see the 6 wonders highlighted below and what their families have to say!
Highlight #1: Meet Kevin
Kevin is a 19-year-old who I have enjoyed working with over the past 6 months. Having met his family recently, it isn’t hard to see why Kevin is such an outstanding young man. Kevin’s mother shared the following with me: “I remember when Kevin was first born and I heard he had Down syndrome, for some reason I thought of all of the things he wouldn’t be able to do. I thought he would never be able to swim. But he did. I thought he’d never have a girlfriend. He does. I thought he would never go to prom. Well, he did—with his girlfriend! Kevin even has a book written about him called, “Kevin Can” written by a friend Tom Mengarelli. So Kevin has now done something I don’t think I’ll ever do!
And that makes me think about how wonderfully different we all are. How boring would it be if we were all the same?”
Highlight #2: Meet Jocelyn
It has been such a pleasure watching another friend, Jocelyn grow from a little girl to a sweet little lady. Her mother shared, “Jocelyn is a helpful, determined, independent young lady. She brings joy to her family and everyone she encounters with her warm hugs. As parents, we have learned how to be more patient, how to love unconditionally, and how to see the hidden struggles of others.
We will never regret making the decision to share our little girl with the world. Her smile and enthusiasm are worth more than any hard day can bring.”
Highlight #3: Meet Joshua
I also met Joshua this fall. He brings great joy to my sessions and you can see how caring he is about others. In a book considered for devotional publishing, Joshua’s mother shared information from “Joshua’s Story.” Here is an excerpt from her book: “The Blessings far outweigh the challenges and we just walk holding God’s hand. Trusting him and no one else and building our treasures heaven-bound. Today Josh is a happy 4-year-old. He loves music and the people in his life. He brings so much joy to each of our lives. Josh does have special needs and has issues I never thought I would be strong enough to go through, but I wouldn’t change a thing; even though I had to surrender the dream I had for my life and embrace the dream God was now giving me. Joshua’s birth has opened up a whole new world for us. It has brought wonderful new people into our lives, people we would have otherwise never have known. We are different people because of Josh. I’m stronger, more compassionate and I have more wisdom about how God sees the world and his people in it. I think it is true. God is preparing us for our purpose in the future, for his kingdom. I know my part is to share all he has done in my life, to help others find their way to him.”
Joshua is now 19 years old. Mom reports that, “Josh’s birth brought many new families into our lives. Families that each had their own child with Down Syndrome, including my best friend from high school, who has a daughter 2 years older than Josh. This has helped us raise Joshua in an environment where other families have shared their experiences, educational, health, as well as personal, helping us not to walk blindly into the unknown. Josh has helped mold and shape his other siblings as to their path in life. His baby sister plans to study Special Education in the Fall and his older sister is finishing nursing school. Josh’s sister, that is even older, has been an elementary school teacher for 2 years now. She has always had a special relationship with Josh.
Highlight #4: Meet Laney
There are so many blessings in these moments our families have shared and more blessings to come as these children grow and learn. I have had the pleasure to observe Laney and am a little jealous that I don’t get to see her! Her mom was able to share some key upsides that her family loves about Laney and her impact on their family. She writes, “Because of Laney, we don't take milestones - big or small - for granted. We have hours of therapies per week helping her accomplish every little milestone that her low muscle tone and body composition make it harder to achieve. She works so hard, she's persistent, and she's determined to do everything anyone else can do. Seeing how hard she works makes us so proud and is so inspiring to those around her. We knew Laney would teach us to be more patient, but she has also taught us deeper appreciation. We appreciate and celebrate every little milestone that much more! We care less about those 'traditional' childhood milestone timelines - she will do anything she puts her mind to, in her own time.
Laney is a happy, smiley, loving girl. Her positivity is infectious. Just looking at her makes you smile! I joke that everywhere we go takes longer than expected because she has to greet everyone she sees - whether it's with a hug, high-five, or elbow bump! She's the most positive, friendly, caring little human I have ever known. The world would be a better place with more people like her. She inspires me to be a better parent and person, and I definitely needed her more than she needed me. Having a child with Down Syndrome was the greatest, most life-changing blessing I never knew I needed.”
Highlight #5: Meet Max
Max and I met years ago! I have seen him blossom in multiple settings over the years. Max’s mom is so proud! Of him, she wrote: “Things we love about Max and what makes him special to our family.
We love Max just because he is Max. He is uniquely himself, the positive and not so positive, just like the rest of us.
He has strong opinions about things that he likes and dislikes
He likes most people that he meets, and will go out of his way to stay in touch with new people and friends.
He’s passionate about sports- those he plays and those that he follows.
He’s confident in his abilities.
He’s a very organized person - he’s the last one in our family to lose or misplace his things.
He keeps his own schedule straight and often reminds us of what’s on the schedule for the day or week.
His memory of things and people from the past is amazing.
He has a way with animals, cats, dogs, and horses.
He’s willing to help others.
He’s good at reading people and emotions, and has been known to be the one consoling others in times of grief, sometimes with a hand on the shoulder, or a hug.
We love that he’s clever and will try to win at board games with a few extra moves.”
Highlight #6: Meet Tera
Tera is a delight! She lights up every room she walks into with that contagious smile of hers. Her mother shared with me, “Tera makes an impact everywhere she goes. We have adults and kids come up to us constantly in stores or out in public and say, “hi” to her and I truly believe it's because Tera sees the good in all people. Since her birth, Tera has changed our perspective as parents and the perspective of almost everyone in our family. We've learned to not sweat the small stuff. The things we used to think were important are just not in comparison to keeping her healthy, supported, and loved. The milestones we celebrate can be so different from other families and on such different timelines, but that makes them so much more significant. Her smile can change your whole day, her hugs can change your whole mood, and watching her enjoy the things she loves most, brings such an appreciation for life. She loves so fiercely and her empathy is undeniable. She is truly a special and unique young lady that we could not be more proud of.”
When I read these words by all these amazing families, I know in my heart that the love they have for their children transcends any conditions or anomalies that have affected them. I have the pleasure of knowing each of these wonderful young men and ladies. And I can tell you, they are all amazing!
The takeaway here can be best summed up in Kevin’s mother’s comment, “How boring would it be if we were all the same?” If you are a new parent to a child with Down Syndrome, I offer you these points for consideration:
Look to the future with an open heart. You never know what will happen.
Don’t be afraid to have big dreams for your child!
Celebrate the small victories along the way!
Find a group for support (see references at the end of this article) so that you know you are not alone.
Get the services your child is entitled to receive (Birth to 3: Early Intervention Services, speech, physical, and occupational therapies, and other services that may be offered to your child.
Once your child is age 1: apply for the PUNS list at https://cau.org/ which offers financial assistance for respite, materials, and therapy.
Make time for yourself, so you have the energy to deal with all that comes your way: the good and the challenging!
Don’t let anyone make you feel that they know your child better than you do!
Written by Lisa Morris, MS, CCC-SLP/L
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