7 Life Lessons From Raising a Child With Down Syndrome

When this mom learned her baby had Down syndrome, she was shocked. Four years later, she looks back and wishes she could have encouraged her younger self with these seven lessons.

Little girl with Down syndrome playing with bubbles
Photo: Getty Images

Deanna Smith is a mother of two toddlers (Addison, 3, who has Down syndrome and Carter, 2) and a former high school music teacher turned stay-at-home mom. Her personal blog, Everything and Nothing from Essex, chronicles her journey through motherhood and raising a child with Down syndrome. She is expecting her third baby in November.

If I could go back in time and relive one moment, without a doubt I would choose the moment four years ago when I received the phone call and heard, "Your baby has Down syndrome." Slumped on the couch, tears overflowing, and feeling like my world just imploded, I knew nothing would ever be the same.

Upon receiving my daughter's prenatal diagnosis, I remember feeling a sense of soul-crushing hopelessness. Hopelessness for what my daughter's life would be like. Hopelessness for what the diagnosis meant for me as a parent. Hopelessness for how different our family would look from the one I had imagined for us. I was changed forever by that call.

But now, looking back on that moment four years later, I want to replace that anxiety, sorrow, and anger with different emotions. Hopeful ones. There were things that I just didn't know at the time. Up to that point, I had a stereotypical picture of Down syndrome in my mind: a life with zero potential, a life spent trapped in a corner with no time to think, feel, or truly live. This unfounded view of Down syndrome created an imagined reality of despair and sadness. A reality that, it turns out, doesn't exist.

If I could go back and relive that moment, I would seize the chance to tell myself these seven things that I have learned since that day.

1. Your baby is a baby first.

You are not giving birth to a "Down syndrome" baby. You are giving birth to your baby, a unique individual who will bear resemblance to you and your family in addition to some similar features to others with Down syndrome. It's amazing how much my two children resemble each other even though one has Down syndrome and the other doesn't. You don't have to love Down syndrome to love your baby. Focus on the life—not the label.

2. Your baby will still achieve typical milestones.

If you have siblings or friends who had babies right around the same time you had yours, you may find yourself falling into the comparison trap. Do not compare your baby to typically developing babies. Instead, start listing the things that your baby has accomplished. Don't diminish your child's beautiful and victorious field of daisies by comparing it to the nearest mountain. The milestones might take a little bit longer, but when they finally happen? The celebration is so much more joyful.

3. There is support and help available.

There's always support for a parent with a child who has special needs. For example, you can enroll your little one in your state's Early Intervention (EI) program as early as 6 weeks old. Early Intervention is a federally-funded program for infants and toddlers that's provided at no cost to parents. It's mandated under the Individualized with Disabilities Education Act. Children who receive Early Intervention Services have Individualized Family Service Plans (IFSPs).

As Susan Skallerup describes in her award-winning book, Babies with Down Syndrome: A New Parents' Guide, early intervention means "intervening early in a child's life to encourage growth and development. Many different professionals are involved in providing EI services, including specialists in motor skills, language and communication, learning acquisition, and social-emotional development." These professionals include speech pathologists, occupational therapists, physical therapists, play therapists, social workers, special educators, and feeding therapists. You child will begin therapies to help them reach milestones faster and correctly. This will set good paths for future learning. Children who receive Early Intervention Services have Individualized Family Service Plans (IFSPs).

4. There is much beauty in Down syndrome.

Oftentimes my daughter's beauty takes my breath away: Sparkling almond-shaped eyes that are the same color as her Daddy's, a captivating smile that often leads to laughter so infectious that the hardest of hearts will melt in response, small hands that are quick to seek mischief and then sign for forgiveness, a cute gap between her toes that is perfect for wearing sandals. Allow your stereotypical reality to crumble and truly get to know the person hidden under the label.

5. Your baby will experience a wide range of emotions.

You might hear someone say that your baby will be "always happy," which can make your baby seem somehow less human. But the truth is that your child will display all types of moods—happy, sad, silly, angry, whiny, hysterical, delighted—the same as any other person.

6. Frustrations can be a good excuse to get creative with your teaching approach.

Embrace the unique frustrations you may face and realize that every child learns differently. For example, if your child has difficulty communicating verbally, teach them sign language. A quote on the website of Signing Time, a Parents Choice-approved DVD series for children, says: "Sign language is a wonderful tool that allows even very small children to express themselves."

7. Down syndrome will not define your child's entire existence.

The huge bit of news will not overshadow your whole life and will eventually slide into the background of a normal family life. You will have bad days that have nothing to do with a diagnosis. You will laugh again and cry again about other things. You will enjoy a lot with your child that has nothing to do with chromosomes or therapy or doctors' appointments.

These days, I am amazed at how much hope I have—hope for Addison's future, for her zest to enjoy life in her own way, and for her ability to achieve whatever she sets her mind to. Her diagnosis has already provided me with new perspectives, ways to love, and a deeper appreciation for the little things.

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