Parenting a Child with Down Syndrome

Parents often experience disbelief, shock, fear, sadness, hopelessness, and even anger when they first learn their baby has Down syndrome (DS). Some parents may be in denial, refusing to accept the news. Some parents may grieve over the dreams they had for their child. Some may isolate themselves, trying to avoid the questions and the sympathetic looks from family and friends. Still, others may even feel angry at the unfairness of it or maybe even at God. Every parent handles the news differently. 

Regardless of where you fall on that spectrum, give yourself lots of grace and time to digest the news. Instead of avoiding those uncomfortable feelings and putting up a brave front, take time to process these feelings and emotions so that you may continue to move forward and focus on your baby. 

Raising a child is challenging. Raising a child with Down syndrome presents specific and more demanding challenges for you as a parent. Recognize that while your child is unique and may need tailored intervention, many children with DS exhibit common behavioral and relational challenges. This article provides tips and practical strategies to support you as you raise your child with DS. I hope you find it helpful and encouraging as you lead your family on this uncharted, yet fulfilling, journey. 

Educate yourself

One of the most helpful things you can do when having a child with DS is to learn as much about the disorder as possible. There are many books written specifically for parents of children with DS as well as numerous resources online. You can also find programs and support groups to help your child. 

Your child’s pediatrician, therapist, healthcare professionals, teachers, and other specialists are valuable resources as your child grows. They will work with you to develop an intervention plan tailored to your child’s needs at different stages of development. 

Support yourself

Parents tend to be “superhumans” when parenting a child with DS. In addition to your work outside of the home or at home, your children’s school, sports, music lessons, or other extracurricular activities, you have extra visits with the doctors or therapists for your child with DS. Parents usually feel exhausted physically and emotionally at the end of the day. They barely have any energy left for their spouse or their other children. 

You need to take care of yourself before you can take care of the family. This is not a cliché. You are no good for anyone if you are always tired or grumpy. Parents need to build a support system, surrounding the family with people who genuinely care. Here are some tips:

• Do not isolate yourself. Invite people who genuinely care into your life. Hang out with friends, talk to them over the phone, and share your struggles and triumphs. 
• Pay attention to your needs. Do not feel bad about asking people for help or accepting their offer to help. Neighbors can help pick up the children or groceries. They can watch the children if you need a break and recharge. Friends can listen to you and allow you to release emotional tension after a difficult day. 
• Join a parent support group. There are many support groups for parents with kids who have DS. Other parents can give your tips or help your brainstorm strategies for your specific challenges. Most importantly, you will realize that other parents have similar struggles and challenges you face and that you are not alone in this journey.
• Seek professional help. Therapists can help you process and work through certain feelings. They can also give you tools to deal with everyday stress or emotional triggers. Don’t feel ashamed if you need to see a professional therapist or marriage counselor. Talk to the therapist if finance is a barrier to receiving help. Most therapists are willing to work with you to come up with a payment plan that can meet your needs.

Guide your child

• Love and accept your child. Yes, your child has Down syndrome. But, your child is NOT defined by it. Your child is a unique individual with a unique set of strengths, weaknesses, gifts, and abilities. Your child has a different personality, likes, and dislikes. Like us, your child experiences and feels things differently from other people. Do not let the unfounded, stereotypical view of Down syndrome skew the reality of who your child is – a unique,  beautiful, one-of-a-kind person.
• Focus on the big picture. Your goal is to help your child grow to be an independent adult and lead a quality life. Every step your child takes, no matter how small, will lead to the destination. Do not get discouraged if you do not see dramatic improvements right away. Remember, Rome was not built in a day. 
• Be realistic. Do NOT compare your child with others. Every child is wired differently and develops at different paces. Set realistic and achievable goals for your child. Celebrate small wins along the way. This will encourage you and your child as you walk the journey together.
• Give your child appropriate responsibilities. Appropriate means that the assigned responsibilities are based on your child’s age, development, attention span, and capabilities. Break the task into small steps. In each step, give your child clear and direct instructions.

ALWAYS show your child how to complete a task first. Then practice it together with your child. All children learn by repetition, so be patient in the learning process. It may take longer for your child to complete the task independently. But when it finally happens, the victory is much more exhilarating. 

• Enjoy your child. Your child is YOUR CHILD. Yes, having a child with Down syndrome adds challenges and complications to your daily life. You may spend most of your time visiting doctors and therapists, teaching your child new skills, and helping with daily activities. But DS does not dictate your relationship with your child. Play with your child and laugh together. Enjoy the time being together with your child. Enjoy your child as a unique, beautiful individual.

Advocate for your child

• Allow your child’s beauty to shine. Your love and support are the most important elements in your child’s life. Do not allow the diagnosis to hinder your child’s potential. There are some things you can do to help your child:
  • Enroll your child in the early intervention program. Early intervention helps your child’s growth and development, setting a good path for the future. 
  • Find support groups to gather information and tools to support your child.
  • Arrange play dates or participate in community events to help your child develop social and communication skills.
  • Work with your child’s pediatricians, therapists, and special education teachers. It is critical that you address your child’s needs and share your concerns. Combining your deep knowledge of your child with their expertise in specific areas, your child will receive the best support possible.
  • Trust in yourself. Remember, no one knows your child better than you. So, do not be afraid to speak up and be an advocate for your child.
• Be involved. Take an active role in developing your child’s Individualized Education Program (IEP). Monitor your child’s progress as IEP is implemented. Communicate with your child’s teacher if there is a need for modification. In addition, take part in school meetings. Even though it may be time-consuming, it will help you know what’s going on in your child’s school and learn about opportunities for your child.
• Teaching your child self-advocacy. Your goal is to train your child to be an independent adult. You will not always be there to speak for your child. Therefore, you must teach your child how to self-advocate. Here are some tips to help empower your child:
  • Offer choices. Let your child make choices if there are safe and reasonable options. It can be as simple as choosing what color of clothes to wear. It can even be something big like choosing between two vacation destinations. 
  • Relinquish some control. Allow your child to make certain decisions in daily activities. Having a say in their everyday activities helps children with DS feel like they have some control over their lives. Children also tend to be more willing to follow through with the decisions if they played a part in the decision-making process.
  • Involve your child in family planning. Help your child know that his or her thoughts are important to you and that their views are valuable. 
  • Be a role model. Teach your child how to be an advocate for what is right. When you speak up for your child, your child sees that he or she is important and has certain rights. 

Care for your family

• Avoid the comparison trap. Every family has its own dynamics and operates differently. Each family comprises different personalities, stressors, relational patterns, parenting styles, …and the list goes on. 

Stop comparing: 

Yourself with the other parents

Your spouse with someone else’s

Your child with DS with other children with DS

Your other children with other children having DS siblings

• Pay attention to your spouse. Parents can get caught up in caring for their child with Down syndrome and doing all the round-of-the-mill family things that they forget to attend to each other’s needs.
  • If you are a husband, try to share your wife’s load by taking care of your other children, sharing the house chores, or taking turns to visit the doctors or therapists. 
  • If you are a wife, understand that your husband may choose to deal with the news and his emotions privately. Even though he may not show it, he is grieving inside. Do not assume that he does not care but encourage him to open up.
  • Find time to be alone with each other. Communicate your needs with each other.
  • Seek marriage counseling if the situation becomes difficult. Counseling can provide a safe space for you to talk about deeper feelings and offer tools to help you manage everyday stress that takes a toll on your relationship.
• Spend time with your other children. Your other children often have a range of feelings about their siblings with DS. They may hold grudges because their siblings with DS get more attention from mom and dad. These children may be “forced” to grow up faster to be the “responsible ones” in order to help their parents. They may even be overly protective of their brothers or sisters with DS. Here are some things you can do to help your other children feel they are as important in your eyes as your child with DS:
  • Spend focused time with each child. MAKE TIME to be with your other children alone. Listen to them, have fun with them, and enjoy them. Most importantly, communicate your love to them by giving them your undivided attention.
  • Find sibling support for them. 
  • Invite friends or family to be part of their life. These people can offer needed support so your other children won’t feel alone.
  • Appreciate them. Thank your other children for their understanding and help around the house.

Final Words of Encouragement

Life is hard when our reality does not meet our expectations. Finding out your child has DS is life-altering, and as a result, your life may be more colorful and beautiful than you ever imagined. May you find joy in the journey and peace in the process.