In the United States, about 6,000 babies are born with Down syndrome every year. This means that more than 200,000 people with Down syndrome live in the United States today.
If your family has recently joined this group, you’re not alone! Discovering your child has Down syndrome can be a complicated, confusing, and overwhelming process, but thousands of families all over the country have been in your shoes.
The best way to prepare for life with Down syndrome is to do as much research as possible, build a trusted care team, and connect with other families living with Down syndrome.
In this article, Ability Central walks you through the seven most important steps to take after discovering your child has Down syndrome.
Here is what to do first after a Down syndrome diagnosis:
Build a trusted care team of doctors and specialists.
Educate yourself as much as possible.
Take time for yourself.
Keep your friends and family in the loop.
Learn about Down syndrome education plans and school programs.
Connect with other families of kids with Down syndrome.
Think about how life will change as your child grows up.
Step One: Build a trusted care team of doctors and specialists.
Care for Down syndrome often involves a team of specialists who understand the condition and the physical health problems that often appear alongside it. (To learn more about other conditions a person with Down syndrome is at risk for, see 9 Things You Should Know About Down Syndrome.)
A Down syndrome care team might include:
Your primary care physician, family doctor, or pediatrician
Pediatric neurologists
Therapists like speech pathologists, physical therapists, and occupational therapists
Physical specialists who treat children’s:
Hearts (pediatric cardiologist)
Digestive systems (pediatric gastroenterologist)
Hormones (pediatric endocrinologist)
Eyes and vision (pediatric ophthalmologist)
Ears and hearing (pediatric ear, nose, and throat specialist or pediatric audiologist)
You can find specialists for Down syndrome through private health insurance, government programs, and local nonprofits. If you already have a pediatrician, your pediatrician may be able to recommend local Down syndrome specialists.
Many organizations offer low-cost or free healthcare opportunities for families living with Down syndrome. To find an organization near you offering Down syndrome support, try out the Ability Central Service Locator tool.
Key Takeaways:
Build a care team of Down syndrome specialists like audiologists, speech therapists, pediatric eye doctors, and pediatric cardiologists.
Reach out to your pediatrician, insurance company, or local hospital network to find Down syndrome care.
If you’re not sure where to start, check out the Ability Central Service Locator tool to find local Down syndrome nonprofits offering support.
Step Two: Educate yourself as much as possible.
The best defense against fear and confusion is information. The more you know about your loved one’s diagnosis, the more prepared you’ll feel.
Find out what treatments are available for Down syndrome, what research is being done on Down syndrome, and what choices make the most sense for your family.
Most pediatricians and hospital networks offer free Down syndrome resources for new parents. Your family doctor may also direct you to online or in-person support groups, research centers, and more.
Organizations like the National Down Syndrome Society (NDSS) offer detailed resources about Down syndrome, Down syndrome treatment, and life with Down syndrome. Read up on things like Down syndrome education plans, careers for people with Down syndrome, and how to give adults with Down syndrome more independence.
You can find excellent resources about Down syndrome from organizations like:
While many of these resources are medical in nature, you should also seek out real-life stories from people who have been in your situation. Many nonprofits share stories and advocacy from families living with Down syndrome. You can also join a local support group to learn more about life with the condition.
Key Takeaways:
Information is the best defense against fear and worry about Down syndrome.
Connect with your pediatrician to find more resources about Down syndrome.
Connect with nonprofit organizations and Down syndrome research organizations for the latest information about Down syndrome.
Read about real families living with Down syndrome to find resources that match your situation.
Step Three: Take time for yourself.
If you’ve just discovered your child has Down syndrome, it’s important to consider your own care, too.
Many parents of children with Down syndrome experience:
Anger
Confusion
Fear
Feelings of loss
Feelings of overwhelm or inadequacy
Grief
They often feel unprepared for the future and wonder if they’ll be able to provide everything a child with Down syndrome needs.
If this sounds familiar, you’re not alone. One of the most important things a parent of someone with Down syndrome can do is take care of themselves.
Don’t be afraid to reach out to a counselor or psychiatrist, connect more often with friends and family, or otherwise take time to process your own emotions.
Key Takeaways:
Take time to process your own emotions about Down syndrome.
Don’t be embarrassed of fear, worry, guilt, or anxiety.
Connect with friends, family, therapists, counselors, or support groups to discuss how you’re feeling.
Step Four: Keep your friends and family in the loop.
Supportive friends and family make adjusting to a Down syndrome diagnosis so much easier.
Many people benefit from telling close friends and family early on, but you don’t have to make that decision right away.
Ask yourself questions like:
* Do I want company or advice at doctors’ appointments?
* Do I need help with chores like house cleaning or picking up groceries?
* What help will I need in the future, and who could be the best at providing that help?
Think about the people in your life you see as your closest support network, like parents, grandparents, siblings, and friends, then share the Down syndrome diagnosis with them when it makes sense.
If your child with Down syndrome has siblings, the National Down Syndrome Society offers suggestions for how to explain Down syndrome to a child:
Talk to your child clearly about the diagnosis without sugar-coating.
Encourage your child to ask questions. If you don’t know the answer, tell them you’ll find out instead of offering something comforting in the moment.
Acknowledge and pay attention to your other children’s needs and emotions. Encourage your kids to speak out about any emotions they’re feeling, not just the positive ones. Keep an eye out for feelings like depression, anxiety, loneliness, or resentment.
Spend quality time with each of your children. This doesn’t mean dividing your time equally, but rather finding out what’s most important to your kids and investing your time wisely.
Keep your kids involved in Down syndrome care, but don’t give them too many responsibilities.
Key Takeaways:
Tell friends and family about the Down syndrome diagnosis when it makes sense for you.
You don’t have to tell everyone right away, but establishing a support system early can be helpful when you need more assistance down the line.
When explaining a Down syndrome diagnosis to children, speak clearly, honestly, and supportively. Encourage kids to ask questions and share any emotions they might be feeling, not just the positive ones.
Step Five: Connect with other families of kids with Down syndrome.
You can connect with other families with Down syndrome online or in-person, formally or informally. Many nonprofit organizations offer support groups for Down syndrome you could join. Or, you could connect with other families online for more personal support.
It’s important for families of people with Down syndrome to build a social network. These social networks can help parents feel more grounded and in control. They can also help siblings feel heard and supported, while offering teenagers with Down syndrome more opportunities for independence.
Social support for families with Down syndrome might include:
Playdates with other kids with Down syndrome
Family outings to community events
Sports teams or other collaborative programming for children with disabilities
Online or in-person Down syndrome support groups for parents and siblings
To find Down syndrome support services near you, check out Ability Central’s nonprofit search tool. You can also find support groups through:
Facebook, like the Down Syndrome and Alzheimer’s Support group
Key Takeaways:
Build a social network to help parents feel more grounded, siblings feel more supported, and people with Down syndrome feel more independent.
Explore formal connection opportunities like support groups.
Discover social events like local sports teams or programs for kids with disabilities.
Step Six: Learn about Down syndrome education plans and school programs.
Education programs for kids with disabilities can be extremely effective, but they take some extra planning.
Early Down syndrome intervention, whether through specialist therapies or education programs at school, is key to improving symptoms and helping people with Down syndrome be as independent as possible.
Speak to your doctor to find local early intervention programs that help with:
Language
Movement or motor skills
Social skills
Independence
As your child approaches school age, consider their unique needs. Can your child take classes alongside their neurotypical peers? Or would they benefit from special education classes?
Connect with teachers, administration, and guidance counselors at your child’s school to develop an individualized education program (IEP) or 504 plan. These special education plans help students with disabilities succeed through accommodations, modifications, and individualized programming.
Key Takeaways:
Down syndrome education can be extremely effective but takes some extra planning.
Connect with your doctor to find early intervention programs for Down syndrome near you.
Connect with your child’s school to develop a Down syndrome special education plan through an IEP or 504 plan.
Step Seven: Think about how life will change as your child grows up.
One of the biggest adjustments for parents of kids with Down syndrome is understanding how their child’s needs will change as they grow older.
For example, teenagers with Down syndrome face the same hormonal changes and challenges as teens without the condition. They experience puberty just like everyone else, although they may face more difficulties—both social and personal—during the process.
In addition, many teens and adults with Down syndrome have a higher risk of developing mental health challenges like:
Anxiety
Depression
Mood swings or personality disorders
Obsessive or compulsive behaviors
Schizophrenia, psychosis, or hallucinations
Stubbornness and oppositional behavior
Tic disorders like Tourette’s syndrome
Uncontrollable laughing or crying that doesn’t fit the situation (the pseudobulbar effect)
These co-occurring conditions can be hard to understand, which can be fuel for behavior issues. If you’re a parent wondering how to deal with Down syndrome behavior from a teenager, know that you’re not the only one facing these puberty challenges.
The teenage years are the most important time for people with Down syndrome to build independence skills, the practices they’ll need to live independently as adults.
These include:
Personal hygiene, including bathing and doing laundry
Cooking meals
Completing house chores
Making purchases and handling money
Time and task management
Sexual education focused on positive decision-making, consent, and sexual health
Social skills mastery
Workplace skills
Driving
Helping a child with Down syndrome learn these skills is crucial to finding a job, establishing healthy relationships, and living independently. Many adults with Down syndrome enjoy successful careers and strong relationships built on the skills they learned as teenagers.
To learn more about long-term care for Down syndrome, see Long-term Success and Support for People With Down Syndrome.
Key Takeaways:
Kids with Down syndrome experience puberty and hormonal changes just like kids without the condition.
Teenagers with Down syndrome might need more help to learn independence skills like hygiene, sexual health, and money, time, and task management.
Enforcing these skills throughout childhood and adolescence will help people with Down syndrome live as independent adults.
Where can I get more information about Down syndrome?
Life with Down syndrome is all about education. Staying informed about the latest Down syndrome research and best practices will help you, your family, and your loved ones with Down syndrome feel confident, secure, and supported.
To learn more about Down syndrome, see:
Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
