Raising and caring for a child with Down syndrome promises both joys and challenges. It's a unique journey, as their needs—and yours—will change through the years.
Caregiving for someone with Down syndrome is often a lifetime need, but you don't have to go it alone. Many resources are available to support you and your child during each stage, from infancy into adulthood.
By learning more about your child's specific needs, monitoring their health, establishing reliable daily care routines, and creating a care plan that supports long-term independence, you can help your child thrive.
What Is Down Syndrome?
Down syndrome is a genetic condition caused by having an extra chromosome, known as trisomy 21. This affects how a person's body and brain develop, leading to certain physical, mental, and developmental characteristics.
Many children with Down syndrome share certain physical features, such as almond-shaped eyes, a flatter facial profile, smaller hands and feet, and shorter stature. They may also have decreased muscle tone (hypotonia), which can affect posture, movement, and coordination.
Mild to moderate developmental and intellectual delays are common, and children with Down syndrome may learn and develop at a different pace than others their age. Some may also have challenges with communication, learning, or daily living skills and can benefit from additional support throughout their development.
With supportive resources, inclusive environments, and meaningful opportunities, many people with Down syndrome often have successful, fulfilling lives.
What to Expect During Each Stage of Development
Understanding what to expect at each stage can help you develop routines for building life skills and supporting developmentally appropriate education for your child.
- Before Birth: Prenatal screening tests can usually detect Down syndrome as early as the first trimester. This can give you time to know what to expect and build your team of medical professionals, caregivers, and other support.
- Infants: If your child has decreased muscle tone, you'll need to be extra careful to support their neck and head when holding and caring for them. Your baby may also sleep for long periods, which can mean you'll need to wake them for scheduled feedings to ensure proper weight gain.
- Early Childhood (1-5 years): As your child grows, they may develop and reach milestones later than other children. They may not walk, talk, or learn at the same pace as others—but everything happens in its own time.
- Late Childhood (6-12 years): As your child grows and starts school, educational delays may become more noticeable. Most children with Down syndrome have mild to moderate learning disabilities. They'll likely benefit from any academic support your school system offers.
- Adolescence (13-19 years): Teenagers with Down syndrome experience many of the same emotional and hormonal changes as their peers. Like all teens, those with Down syndrome may need your guidance and understanding as they learn to process and express their feelings.
How to Care for a Child with Down Syndrome
Your primary concerns are likely to be the same as all parents—you want your child to be healthy and thrive in life. You'll have your fill of emotional care to give in your own way, but education and health will likely also take center stage.
No matter your child's age, individually tailored care plans and engaging daily routines that build and reinforce life skills can make a huge difference in their development and confidence.
Here are some considerations when raising a child with Down syndrome.
Start with Building a Down Syndrome Care Plan
Creating a care plan means being prepared to manage your child's health concerns as well as their developmental goals. You may, at times, be not just their parent but their advocate in getting the community support they need to learn and grow.
Your child’s Down syndrome care plan will depend on their individual needs and goals, but it helps to assemble a team of partners who are focused on your child's care. Having healthcare providers, educational experts, and reliable caregivers in your corner can give you confidence that you're providing your child with what they need to live a healthy, joyful life.
Pediatrician
Your pediatrician will be one of your first allies. They'll monitor your child's health and development and answer any questions you have. But you may need a team of other healthcare professionals, such as in-home pediatric nurses, if your child has any conditions commonly associated with Down syndrome.
Physical & Occupational Therapists
Physical therapists (PTs) and occupational therapists (OTs) can help ensure your child's gross and fine motor skills are developing at the pace that's right for them. These professionals have creative ways to build strength, improve coordination, and encourage independence through play-based and other engaging activities.
Speech Language Pathologists
Speech language pathologists (SLPs) work with your child at their level to cultivate effective communication skills. This includes a wide range of verbal and nonverbal coaching to help your child understand others and express themselves clearly. They also use play- or situation-based activities to work on facial expressions, eye contact, visual cues, body language, sound production, vocabulary, socializing, and more.
School Staff
School staff like teachers, aides, administrators, and counselors will be key in shaping your care plan. As early as toddler age, you may want to explore early intervention programs in your school district to kickstart your child's educational needs. Educators will help you determine whether your child thrives in a mainstream classroom, benefits more from special education support, or would do best with an inclusive and personalized hybrid approach. Talk with school staff about an individualized educational plan (IEP), a document outlining the educational resources your child needs to reach their goals.
Caregivers
Caregivers, including family, friends, and professionals, are a must-have in your child’s care plan. These are the people you can rely on because they know how to take care of your child. For one thing, you'll need respite care from time to time to care for yourself and avoid caregiver burnout. But also, children with Down syndrome may benefit from having in-home pediatric caregivers who can support their medical and daily living needs.
Watch for Common Health Issues with Down Syndrome
Children with Down syndrome are at higher risk for certain medical conditions, primarily those affecting their musculoskeletal, cardiac, and neurological systems.
Medical professionals usually keep an eye on these possible developments over the lifetime of a person with Down syndrome:
- Heart malformations and anomalies
- Developmental delays and communication challenges
- Gastrointestinal concerns, such as celiac disease and difficulty swallowing
- Obstructive sleep apnea and other sleep disorders
- Vision or hearing issues
- Hypothyroidism
- Epileptic seizures
- Blood disorders, particularly leukemia
- Mental health and emotional challenges
- Frequent infections, especially lung or ear infections
- Early onset Alzheimer's disease symptoms
Every person has different symptoms and traits, so it's important to have frequent checkups and proactively request health and educational evaluations. Early and individualized support, including home care, can make a meaningful difference in your child's life.
Encourage Daily Routines and Skills That Grow with Your Child
Learning life skills at a young age is crucial for all children, including children with Down syndrome. Consistent, daily routines can help establish essential skills that your child will use throughout their life.
You might use a visual schedule or encourage learning through play. Try different strategies with your child and encourage them to develop routines that evolve as they gain new skills. Some ideas include:
- Letting your child help with tasks around the house that match their skills, such as putting away toys, sorting laundry, or setting the table for meals
- Encouraging physical activity through daily play, such as tossing a ball, going to the park, or having a dance break
- Helping them learn personal hygiene, such as brushing their teeth, taking a bath or showering, or getting dressed
- Practicing a variety of communication skills, such as singing songs, learning sign language, or drawing pictures
- Socializing with other children, such as playing together at recess, having a playdate, or going on community outings
Supporting Independence Through Adulthood
Adults with Down syndrome have a range of needs and abilities. Some will learn to drive, have a job, and mostly live on their own. Some may only need help with job skills, finances, transportation, healthcare, or decision-making. And some may need ongoing daily care.
Throughout all their life stages, your child may benefit from in-home care services. Caregivers can help them learn how to be on their own by building skills, establishing routines, and managing health concerns with the goal of becoming as independent as possible.
Partner with BrightStar Care for Child Care and Respite Care
Strong care plans, regular health monitoring, and a supportive network can make all the difference when you are raising a child with Down syndrome. The caregivers and skilled nurses at BrightStar Care can help create a personalized Down syndrome home care plan for your family so that your child gets the care they need and you get the respite care you need.
If you are exploring in-home support options for your child, BrightStar Care® can help you build a care plan tailored to your needs. Whether you're looking for in-home care services or pediatric nursing services, our experienced local care team members are ready to help. Find a location near you, contact us online, or call (866) 618-7827 to learn more about how BrightStar Care offers A Higher Standard®.