Hearing the doctor diagnose your baby with Down syndrome is no small pill to swallow. Not only do you need to figure out how to be a parent to your child, but you now need to learn what it means to parent a child with Down syndrome.
It’s really not much different than parenting a child without Down syndrome. They’re still a child who needs to be fed, loved, cared for, played with, etc.; they’ll just have some additional needs, too.
Here, we’ll go through some important advice parents of children with Down syndrome have given for new parents whose child has the diagnosis:
1. It’s going to be okay. You will have challenges, but most families who have a child or sibling with Down syndrome are often happier and more positive than those who do not.
2. There’s a lot of misinformation about Down syndrome. Learn the facts about Down syndrome. We have come a long way in our society when it comes to Down syndrome, especially in medical advancements. In the 1980s, a child’s life expectancy with Down syndrome was only 25 years; now, it’s 60. People with Down syndrome are successful in life—completing high school and college, living on their own, participating in sports, managing restaurants, working in the entertainment industry, etc.
Furthermore, you and your family can do day-to-day things. This may be one of the biggest misconceptions out there about Down syndrome. When some people hear that a friend or family member’s child has Down syndrome, they falsely assume that you won’t be able to go out and do day-to-day things. That couldn’t be further from the truth. Children with Down syndrome love to do things other children love to do—like going outside, going to an amusement park, going to the beach, etc.
3. Your child is still a child. Children with Down syndrome have particular needs because of their diagnosis, but that diagnosis should not stand in the way of you treating them like a child. Plan play dates for them, take them to the grocery store, have them participate in children’s events around the community and at church. Treat them like children and let them have fun. And as they start getting older, see if you can find activities within your community for children with special needs. Within these programs, your child can thrive in an environment designed especially for him. He’ll grow and learn more about himself and others with the same diagnosis.
4. Good therapists and specialists are essential. Although your child may be similar to other children, his doctor visits will look a little different. Children with Down syndrome have a different growth rate and routine tests that are needed than children without Down syndrome. Therefore, it’s important that you find a pediatrician who has experience working with children with Down syndrome, a specialist who can address more specific needs and a therapist who can help them in speech therapy and assist in other obstacles that may hinder them.
5. Communication is key. This can be a bit trying at first when your child can’t properly communicate what they need to you. When they’re an infant or toddler, look for baby sign language books, videos, websites or personal teachers that can help you communicate with each other. Some families also use picture aids.
And as children grow, they want to communicate with you and others; however, children with this diagnosis have a harder time doing this than other children. Down syndrome can cause delayed speech and difficulty articulating what they want to say. But they want to speak and they want to be heard. Be patient with them as they try to communicate what they want. A speech therapist can also contribute to your child’s speech development.
6. Other parents of children with Down syndrome can be your greatest allies. Need a lifeline? Meeting and talking with other parents who have a child with Down syndrome can offer you a great deal of comfort, encouragement, hope and knowledge. They’ll be able to offer you advice based on what they’ve learned and encourage you when you’re feeling hopeless.
Wondering where you can find such a community? Many local communities have created support group for families who have a loved one with Down syndrome. You can look for a group in your area on the National Down Syndrome Society website.
7. Bask in your child’s accomplishments and strengths. Your child has a distinct personality with his/her own strengths. You should encourage him in those. Moreover, use those personality traits and strengths to brag about your child. It can be tempting to solely focus on what obstacles they face instead of focusing on their triumphs, but it’s those triumphs that will show you and others who they really are.
There are many children out there with Down syndrome who are doing what they love and accomplishing more than you could even dream possible. There are high school and college graduates, restaurant owners, mountain climbers, actresses and actors, swimmers and models—all with Down syndrome.
8. Your child will change your family and friends’ lives for the better. If you think about the accomplishments listed above and think about the physical obstacles that come with a Down syndrome diagnosis, it is amazing and inspiring to witness how courageous and strong these children are. Seeing these accomplishments, or even just the small victories every day, can change your heart and all of the people around you. Seeing the heart and joy and love these kids have for others can also open the hearts of others. So get your child involved and be proud of who they are.
While parenting a child with Down syndrome can have its challenges, being informed and keeping a positive outlook on the situation can do a great deal for you and your family’s life. Let them teach you, challenge you and inspire you.
Do you have a child with Down syndrome or know someone who does? Share their victories with us in the comment section below.