When you discover that your child has down syndrome, whether prenatally or after they are born, it can be overwhelming. You must adjust to a new understanding of who your child will be and what their life will look like. You will adjust to this new reality in your own way — there is no “right” way to approach a down syndrome diagnosis.
Fortunately, there are many resources for individuals with Down syndrome and their families.
The Adjustment Period
You might be experiencing a wide range of emotions right now. You might be excited for your bundle of joy, but still feel grief over the life you had imagined for your child. You can hold space for both of these emotions. You may also be worried about meeting your child’s needs, the unique medical concerns for individuals with Down syndrome, and how you will afford the different therapies your child may need, as well as all the concerns you have for the rest of your family.
In contrast, others find empowerment in this diagnosis, as it gives them a direction in which to target their research. Whatever your experience is, it’s valid, and it may change over time. It will likely take some time to adjust to the news, and give yourself plenty of leeway to do so. If, after a few months, you’re feeling depressed, anxious, or sad, you may want to talk to your doctor.
Caring For Yourself
In order to do what’s best for your child, it’s important for you to take care of yourself during this time. Taking care of yourself physically by incorporating movement into your day and eating in a way that makes you feel good is important for your emotional well-being as well. This is also an important time to lean on your support network. Be open about asking for help when you need it, as this will help your child throughout their life when you will need a community behind you.
We encourage you to embrace mindfulness during this time. Mindfulness is essentially “living in the moment” — focusing on what is happening now rather than regretting the past or worrying about the future. There is a whole body of research behind the idea that mindfulness leads to less stressed out parents and happier children.
The Importance of Community
They say it takes a village to raise a child, and this is especially true if the child has a developmental disorder. We highly recommend connecting with other people who have been touched by Down syndrome, as they will have unique insight into the disorder that lends itself well to both emotional support and practical advice.
There are many ways to form your Down syndrome community. There are plenty of national organizations around the disorder, including:
- The National Down Syndrome Society
- The Down Syndrome Research Foundation
- The National Association of Down Syndrome
- The National Down Syndrome Congress
These organizations have incredible resources for individuals with Down syndrome and their families, from information about the disorder to the latest research to stories of people with Down syndrome who live fulfilling, happy lives. They also offer social media profiles that can be a great resource for connecting with others.
There is also an abundance of support groups for individuals with Down syndrome and their families — you can find a local support group through the National Down Syndrome Society, as they have many affiliates across the U.S., and you can search the Rocky Mountain Down Syndrome Association website for support groups in Colorado.
Individuals with Down syndrome face an increased risk for a variety of health issues, such as heart defects, gastrointestinal issues, spinal cord injuries, and more. Depending on your child’s health, you may consider pediatric home healthcare in Denver. At Evergreen, we have extensive experience working with individuals with Down syndrome, and would be happy to have the opportunity to join your network of support to ensure your child gets the help they need in their comfortable home environment.
Challenges for Parents of Children With Down Syndrome
Of course, as strong and supportive as the Down syndrome community is, there are also individuals who don’t understand the disorder, and may even be intolerant of people with Down syndrome. For example, in one survey, 30 percent of people said they believed children with Down syndrome created distractions in the classroom, and 40 percent of children ages nine to 18 said they wouldn’t be willing to spend time with a child with Down syndrome outside the classroom.
While we hope that you never come across individuals with this attitude, it’s important to educate yourself on your child’s rights in case you come across anyone who tries to, for example, ban them from their classroom. The Americans With Disabilities Act prohibits discrimination against individuals with disabilities in public accommodations, communications, transportation, employment, or access to government services.
You may also experience discrimination on a personal level. Rude remarks, stares, and even innocent but ignorant questions may also present challenges. There are many ways you can respond to these, and what you choose will depend on what is best for you and how you feel that day. For example, you may find ignoring it is the best strategy, or you may attempt to gently correct these individuals. The important thing is to not let other people’s ignorance impact your child or your relationship with them.
While individuals with Down syndrome face unique challenges, they are still capable of having joyful lives filled with meaning. A Down syndrome diagnosis doesn’t have to be negative for your family. If you need help with the care of your child, consider contacting Evergreen Home Healthcare for pediatric home health care in Denver. We would be honored to help your family make this important transition, and ensure the best care for your child. Contact us today.