Six years ago on World Down Syndrome Day, I introduced the world to our amazing son Michael.
I remember this day like it was yesterday. I was a new mom, only 25 years old and feeling so scared. I feared the judgement towards my perfect baby. I feared feeling alone in a parenting world where I not only was considered a “young mom”, but the young mom with a baby who happened to have Down Syndrome.
I had to put those feelings aside because guess what? My baby knew nothing about Down Syndrome. All that truly mattered was that he was happy, healthy, loved and able. He was stronger than me and I quickly learned to suck in my pride and special needs stereotypes to put my best foot forward into the parenting world. I learned how to be the best mother and advocate for him.
During these six years I have learned so many things about community, inclusion, patience and more. I want to share the top 5 things I have learned with other parents of children with Down Syndrome who may be struggling to find their way throughout this world with their loved one.
#1. You are not alone.
When I became Michael’s mom, I was so scared that I would never connect with other parents who have children with Down Syndrome. Little did I know, that this community is so large that I have made friends near and far. These parents I have connected with have had similar struggles and triumphs while raising a child with Down Syndrome too. It is a community where you feel like you are family, you just get each other. There are also a ton of support groups online. In our area I suggest reaching out and becoming a member to our local Down Syndrome Association of the Hudson Valley.
#2. Set goals, not times- be patient.
Setting goals for your child with Down Syndrome is important, but don’t let the time that it might take to get to that goal discourage you from getting there. When Michael was a baby I would check typical milestone charts and charts for babies with Down Syndrome. My mind would race at working towards these goals and pushing him each and every day. While being proactive is great, worrying and stressing to reach these goals just like every other “typical” child was not. I had to learn to let Michael work at these goals at his own pace.
#3. Make time for going on day trips and having fun.
There is so much focus put on working towards goals, it is easy to forget the importance of letting Michael be a kid and have fun (not that learning isn’t fun). I thoroughly enjoy taking Michael to the park, movies, aquarium and anywhere that excites him to watch him play and mingle with other children.
See More: 17 Places for Children with Special Needs to Play
#4. Accept help when it is offered.
While being super-parent is great, it is also important to take some me time for yourself and accept help from family and friends. It truly does take a village to raise children. Building and having a support system is super important for yourself and also for your child with Down Syndrome. When you surround yourself with your village they too will learn the love and joy that comes with raising kids. Mental and physical health is so important for not only you, but for your children. If you need a time out from life, take it. You deserve it!
Related: Get the Lowdown on Vaccines and Special Needs
#5 Down Syndrome doesn’t define who Michael is.
Michael is smart. He is able. He is willing to learn. He is the boy who could sit and watch Disney movies ALL. DAY. LONG. (While reciting all the lines). He loves to read. He enjoys being challenged. He can be super stubborn. He loves with his entire being. His hugs are the warmest and his kisses are wet, very wet. His favorite thing to eat is pizza. He has a huge sweet tooth. Music. Is. Life. for Michael. Dancing is his cure-all. He loves to swim and play baseball. He admires his brothers. He finds great joy in seeing other people smile and laugh. Birthdays are HUGE around here (if family is reading this right now, you know what I’m talking about!). Michael loves his family, his friends, his teachers, therapists and everyone he meets in life.
People with Down Syndrome are just that- people WITH Down Syndrome. Down Syndrome does not define who they are. I would never take Down Syndrome away from Michael even if I could. He sees life in a way I wish all people could see it. Is he happy all the time? No. But Michael sees the good in us all.
Having him in our lives did not happen by chance and I truly believe that. I have been told that Michael is so lucky to have me, but the way I see it is that I am so lucky to have him. He has changed my life indefinitely and has truly made me a better person.
Happy World Down Syndrome Day to all of those living with Down Syndrome, especially to our little guy Michael. You are so loved and we will stop at nothing to help create a world where you are accepted and included just like everyone else.
Megan Delaney lives in Warwick with her three beautiful boys and husband, Mike. Together they love beach days, playing sports and fundraising for the annual Buddy Walk. Megan has been involved with the DSAHV since 2013 and holds an event at the local Wine & Design every year for the Buddy Walk.