What is Down syndrome? Most people are born with 46 chromosomes but babies with Down syndrome have 47. In this case, a duplicate of chromosome 21 causes Down syndrome. According to NAPA (Neurological and Physical Abilitation) Center, roughly one in 691 babies will be born with Down syndrome. That is nearly 700 babies, or 6,000 babies born with Down syndrome in the U.S. every year. If you are new to parenting a child with Down syndrome, here are some helpful tips to get you started on the right track.
1. Know the Facts About Down Syndrome
The first thing many parents do before having a baby with Down syndrome is reading up on the facts of the disease. Thanks to medical advances, people with Down syndrome now live twice as long as they used to. The average lifespan is about 60 years, but some Americans with Down syndrome live well into their 70s and 80s.
Additionally, many families who have children with Down syndrome report that their experiences have enriched their lives! A study published in the American Journal of Medical Genetics (AJMG) reports that a full 79% of parents of a child with Down syndrome or a child with a disability say that “their outlook on life was more positive because of their child.” Better yet, the overwhelming majority of their siblings (94%) say they are proud of their brother or sister with Down syndrome.
Most importantly, according to the AJMG study, 99% of U.S. men and women with Down syndrome describe their lives as happy. The facts are that, in families who have a child with Down syndrome, parents are less likely to get divorced and siblings show more kindness to their peers. More and more people with Down syndrome are living relatively normal lives, completing high school, entering the workforce, going to college, and living mostly independently.
2. Be Positive
One thing that is important to remember if you are raising a child with a disability is to be as positive as possible. Raising a child can be hard, but remembering to smile will make it all worthwhile. Encourage persistence and play to your child’s strengths! For example, if your child tries something and does not succeed, avoid scolding them or telling them that they can’t do it. Instead, encourage them to try again, and be enthusiastic about the effort put into it.
Make a point of telling your child what he or she does well.
3. Reach Out For Support
In spite of your best efforts, parenting a child can seem impossible without the right support networks, whether your child has Down syndrome or otherwise. Reach out to other parents raising children with Down syndrome for support. That support can take just about any form you would like; whether that means attending local support groups in person, reading parenting blogs, researching specifics on the National Down Syndrome Society (NDSS) or National Down Syndrome Congress’s (NDSC) official web pages, or joining online discussion groups about raising a child with a disability.
You might also find that something as simple as leaning on family members can help reduce stress and promote feelings of happiness throughout the day. Whether that means inviting over your siblings for a game night or engaging in a late-night phone call with a parent, know that your family members and friends are there to help you — and your family — thrive.
4. Secure the Best Possible Care For Your Child
Talking to other parents raising kids with Down syndrome is important for your child, your family, and your own well-being. However, that alone is not enough. Have a network of strong, trusted teachers, doctors, and therapists to work with you to provide the very best for your child. Regular appointments with pediatricians, therapists, and specialists can be highly beneficial when it comes to understanding your child’s health. Check the NDSS for the latest recommendations and healthcare guidelines for your child with Down syndrome.
5. Make Communicating a Top Priority
A child with a disability like Down syndrome may have some difficulty communicating, owing to underdeveloped muscle tone in their face and around their mouths. Working with a speech therapist can help children develop these muscles and improve their communication overall. It is also a good idea to learn rudimentary sign language when babies are young. Babies with Down syndrome may talk — or talk clearly — a bit later than their peers. Knowing signs like “eat,” “drink,” “hungry,” and “done” can go a long way to make things a bit easier during your child’s early years.
Raising a child with a disability or a child with Down syndrome can be a fulfilling, heart-warming experience. Make the most of it by developing communication and speech early, working with trusted doctors and therapists, talking to other parents of children with Down syndrome, and valuing your child for all that they have to give.
