Coping With Down Syndrome

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Whether a Down syndrome diagnosis is made through prenatal testing or discovered soon after your baby is born, you are bound to feel unsettled as you work to adjust to this new reality. Like many events, people adjust to this realization in different ways, all of which are perfectly valid. Dealing with your varied emotions is just one of many challenges you'll face as you strive to cope with a loved one having Down syndrome.

Fortunately, the Down syndrome community runs wide and deep. You will be able to find many sources of support and practical information on embarking on your journey as a parent of someone with Down syndrome, as well as managing challenges and embracing joys as the years pass.

Emotional

Emotions that come with a diagnosis are unique to everyone, and there is no "right" way to feel. It's important to remember that even feelings that seem wildly different don’t cancel each other out. You can experience several at one time, all of which are valid.

For example, you may be overwhelmed by love and excitement for your little one while you are grieving the loss of a life you had painted for him or her in your mind. This may be compounded by worries and fears about how you'll manage to care for your child's needs, what medical problems he or she may face, how you'll juggle the different therapies and treatments your child may need throughout their entire lifetime, and more.

On the other hand, you may feel that your child's diagnosis empowers more than overwhelms you. Those around you may share your feelings or not. Honor your experience and the fact that what you feel today may change—and perhaps change again.

Natural Adjustments

Know that it can take some time to feel back in balance after what is typically surprising news. That said, if after a few months you continue to feel sad, anxious, or depressed, see your doctor. You may be suffering from depression or, specifically for moms, postpartum depression.

Keep in mind, too, that labor and delivery are exhausting endeavors. If you've just given birth, you will experience a multitude of hormonal fluctuations as your body adjusts to no longer being pregnant. As these hormones ebb and flow, emotions do the same. It can be a difficult experience after the arrival of any child.

Lessening Your Emotional Load

Taking care of yourself physically at this time also will help you manage your emotions. Call on your partner, members of your extended family, or your friends, or hire a doula or baby nurse to help with baby care so that you're able to eat nutritious meals and get as much rest as you can. Being open to asking for and accepting help when you need it will serve you well even as your child grows: There likely will be other times throughout your child's life when you may need to turn to other people for support.

One of the most helpful emotional tools available to anyone who's dealing with ongoing challenges is mindfulness—"living in the moment." This approach encourages focusing on whatever is happening now rather than dwelling on past regrets or worrying about future problems. Studies have shown that mindfulness-based strategies are measurably useful for lowering stress in parents and caregivers of children with developmental problems. 

Beyond potentially alleviating stress, practicing mindfulness as you interact and play with your child will allow you to see and appreciate the joys of parenthood.

Social

To the parent or caregiver of a child with Down syndrome, a strong social network will be an invaluable asset. It's immensely comforting and profoundly practical to turn to other people who are going through what you are, whether for emotional support or pragmatic advice. 

Social support for Down syndrome can come in many forms. Many national and non-profit organizations devoted to Down syndrome have robust websites for families and caregivers that feature everything from general information about the disorder to recent study findings, practical advice, and even profiles of people who have Down syndrome and are living happy, healthy lives. The social media platforms for these websites also can be useful sources of information and an easy way to reach others who are looking to connect and share advice and empathy.

Start with these helpful resources:

You may also be able to find a local support group for parents and families of people with Down syndrome. These can be particularly helpful because you may be able to learn more about nearby resources for your child and connect with other parents and their children face-to-face.

The NDSS is a useful source for finding such groups. It has more than 375 support group affiliates throughout the United States ranging from large operations to small neighborhood groups. Regardless of size and scope, nearly all offer "new parent support and education, family meetings, sibling and grandparent support, recreational activities, lending libraries, helplines," and more. 

Challenges

On the flip side of social support is the reality that not everyone will be understanding or perhaps even tolerant of people with Down syndrome.

One 2010 study found, for instance, that nearly a quarter of people in two separate surveys believed children with Down syndrome should go to special schools and 30 percent felt that such children created distractions in the classroom. Among children ages 9 to 18 who were part of the study, nearly 40 percent said they wouldn't be willing to spend time with a child with Down syndrome outside of the classroom. 

Hopefully, neither you nor your child will experience such attitudes. If you do, remember that the Americans with Disabilities Act is in place to prohibit discrimination against people with disabilities in employment, transportation, public accommodations, communications, and access to state and local government programs and services. 

On a personal level, at some point, you may find yourself having to deal directly with staring, rude remarks, or seemingly innocent questions from other people about your child and your situation. Of course, there are many ways to respond in these situations: You can ignore the stares, say, or attempt to correct another person's misconceptions about Down syndrome.

What's most important is that you try not to allow other people's ignorance to hurt your child or cloud your relationship. If you need help finding ways to respond to the negativity that you're comfortable with, ask others in your support group what they do or say or speak with a therapist or social worker.  

Physical

The physical issues your child could face—heart defects, gastrointestinal issues, ear infections, and so on—may vary, and your ability influence them may be fairly limited outside of ensuring that they follow their recommended treatment plan. Atlantoaxial instability is one concern that may be influenced by choices you make.

Down syndrome is a risk factor for this condition, which is defined as excessive movement between the first and second cervical vertebrae (C1 and C2). Though atlantoaxial instability is no longer routinely screened for in Down syndrome patients, it's important that you be on the lookout for its signs—including urinary urgency, loss of balance, and leg stiffness—that can indicate related spinal cord compression.

But beyond that, know that certain physical activities can put someone with Down syndrome at even greater risk for spinal cord injury—a reason why the Special Olympics requires related screening for athletes wishing to compete in some sports. These include football, soccer, and gymnastics. Trampoline use should also be avoided in kids under age 6 (and sometimes even older children).

Run any physical activity desires by a doctor and help your child find an outlet for his or her energy that is both enjoyable and safe.

Practical

It would be impossible to address all of the practical concerns that can arise when coping with Down syndrome. After all, no two people with the condition share the same array of challenges. In the beginning, however, there are several that most families have in common: 

Caring For Your Other Children

Any newborn needs a lot of attention during his first months of life—something all older siblings have to deal with. When a baby brother or sister has health problems and requires even more time and attention it can be especially tough. What's more, just like their parents, older siblings have to adjust to the fact that the newest addition to the family has special needs. 

Addressing the first issue is mostly a matter of being aware that your older kids may be feeling left out. Involve them in the baby's care just as you would any other newborn, but be sure to also set aside one-on-one time just for them. Even if you and your partner have to tag team—one cares for your infant while the other takes the older children to the park or out for ice cream—that focused time will go a long way toward helping your entire family adjust to the new reality of life with a special needs child.

The second issue may be less problematic than you think, depending on the ages of your older kids. A toddler may not even notice that the baby is "different," while a preschooler or school-age kid may already have interacted with a child with Down syndrome in class. Don't be surprised, in that case, if your older child can teach you or those around you a thing or two. 

Do be aware that older children may be more confused or less able to accept the new baby's condition, but are reluctant to talk about what they're feeling because they don't want to add to what they may view as a burden their parents are dealing with. Check in with your tween or teen often, and if you sense they could use additional support, look for help from a school counselor, family therapist, or community organization such as a church.

Note, too, that teenagers often turn to friends, so your child's peers may wind up being an important source of emotional support. Try not to be hurt by this, but do make sure your older child knows that you are available to answer any questions or to help with any concerns. 

Buying Baby Gear and Toys

It may sound trivial to worry about which types of toys you should buy your child with Down syndrome, but think of it this way: Toys are the tools of childhood. Most are designed with a child's age and developmental stage in mind, with an eye toward providing some type of educational benefit. And since you'll want to expose your child to as many opportunities as possible to learn and grow, the playthings you offer will matter.

For instance, a play mat can be an important item for a baby with Down syndrome. That's because like all infants, those with Down syndrome need to spend lots of time on their bellies in order to develop strength in the neck and upper back. It's even more vital for babies with Down syndrome since they are born with low muscle tone (hypotonia). A play mat that features lots of bright colors and images will invite your little one to lift her head and look around at what's in front of her. 

In fact, in general, the most important guideline for purchasing toys for babies and children with Down syndrome is to focus on their specific needs and/or problems. For example, to develop gross motor issues, climbing, stacking, and moving toys are a good choice. Playthings that appeal to multiple senses are important too. Do note that some kids with Down syndrome have sensory issues that could make them uncomfortable if sounds are too loud. So, if you're looking for a toy that plays music or makes sounds be sure it has a volume button or on-off switch. 

For specific guidance, your child's doctor or therapist can help, as can other parents in your support group. The web is another great source. For example, Fat Brain Toys, which is a website that features toys targeted to many different disabilities, groups playthings according to developmental goal as well as by type of disability. 

Planning Future Pregnancies

After having one child with Down syndrome, you may feel cautious about having another baby. It may be comforting to know that only 1 percent of cases of Down syndrome are caused by a parent passing it along to a child through genes. If you and your partner had karyotype testing when your first child with Down syndrome was born, then you already know if the type of trisomy 21 your child has was passed along from either of you.  

The key to planning a pregnancy after having a baby with Down syndrome is just that: planning. This will be the best way to minimize any fears you may have. It's especially important to have candid conversations with your partner to make sure you're on the same page regarding prenatal testing and what you will do if you discover that you may have a second child with Down syndrome (or some other disability). 

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