Be intentional when grandparenting special needs children

“Todd” and “Emily” were so excited about the birth of their first grandchild. Both retired, they realized they would have extra time to spend being part of this little one’s life. 

After the baby was born, their son came into the hospital waiting room and said, “There is a problem. The doctor said our baby has Down syndrome. He will be delayed in some areas … but there are still many things we can do together.”

“Seeing our son trying to hold back the tears was one of the saddest days of my life,” Emily said. “His face was ashen. He spoke as if his voice was outside his body.”

Data in the U.S. show one in every 33 babies is born with special needs. For many, there is no known reason why it happens; no known family history of a disorder; no health issues during pregnancy; no pre- or post-delivery difficulty; no indication of a problem. It just happens.

Three types of special needs are physical, developmental and behavioral/emotional.

“Our grandson is developing like other babies, only he is a little behind what is expected at this stage. We are blessed to have this special little one in our lives,” Emily said. “This we know — This baby has brought our family closer together.

“We focus on what he can do — not what he is unable to do. This baby is a gift from God and is wonderfully made.” 

Becoming an intentional grandparent

As grandparents of special needs children, realize you are needed. Make a commitment to become invested in the child’s spiritual development. Become an advocate for inclusion and equal rights. Speak up when others use the “r-word.” Even if children are born with a heart condition, medically fragile or with an extra 21st chromosome, remember, they are children first. And they are created by God.

Whether you live nearby or a distance away, consider these suggestions to help support those blessed with children with special needs.

How Grandparents (Who Live Nearby) Can Help

Many opportunities exist to help young families and be a vital part of making a difference with special needs grandchildren. If you live on the same street or in the same community, count yourself blessed. 

• Volunteer to babysit so the parents can have time alone. What works best? Your home or their place?
• Cook and deliver a weekly meal, or order one and have it delivered. Choose one night a week.
• Become informed on the child’s disability. Research medical-approved, disability-specific internet sites that provide current, accurate information.
• Know and practice safety precautions when caring for the child.
• Be aware of allergies the child may have developed.
• Support specific groups focusing on the child’s disability, i.e., walk-a-thons, golf tournaments.
• As the child grows older, read stories to him/her of people with similar disabilities and how they overcame this setback and made a difference in the world.
• Provide one-on-one activities for other children in the family. Often a child with special needs receives a lot of attention and siblings can feel left out.

How Grandparents (Who Live Away) Can Help

Don’t allow distance to keep you from being involved with your special grandchildren. 

• Use technology, such as FaceTime and Skype, to stay connected.
• Send subscriptions of Christian-based literature, including children and youth magazines, to the family. 
• Order weekly or monthly takeout meals from a restaurant near where the family lives and have it delivered to their home. Check for a convenient time. Is there a weekly or monthly night when the wife or husband work late and must come home and prepare dinner?
• Send cards, not only for birthdays, but other events throughout the year. Better yet, make a card.
• Communicate through digital photography and videos. Capture sensory experiences and create a video the grandchild can open on a smartphone or computer. Young children learn best through their senses. Take this opportunity to explain about the five senses and teach that they are a gift from God.
  • For example:
    • Sight — songbirds eating from a feeder
    • Sound — wind blowing, music, rain on the roof
    • Touch — petting a puppy or kitten
    • Smell — fragrant flowers, cooking aromas
    • Taste — a bite of banana or spoon of peanut butter

Parental advice for extended family and friends

One young mother posted on her Facebook page, “Don’t praise me for loving my child. Isn’t this what mothers and fathers are supposed to do?”

When a baby is born with special needs:

• Celebrate the birth as with any new addition to the family.
• Encourage grandparents to be involved with the baby. Relate specific ways they can be of help.
• Don’t put limitations on the child. See the potential — not the disability.
• Respect the family’s need for privacy. Parents need time to adjust and heal.
• Connect with church family and social media to find people who share similar situations.
• Become a messenger and support other parents. Make this your ministry. 
• Educate others to be accepting of people with special needs.
• Become involved in a special needs group. For new parents, this can be frightening at first because of so many unknowns. Encourage grandparents to attend too.
• Find a church home where trained teachers and staff show Jesus loves all children.

Neonatal Intensive Care Unit (NICU) Bags

When a baby is born with a disability, a stay in the NICU is the norm. Grandparents can help their adult children and also provide support for other families. Purchase an inexpensive monogram canvas bag and fill it with small gifts including gift cards for coffee, a devotion book, small toiletry items for parents, a children’s book, a soft baby blanket and a snuggle toy.

Helpful Resources

Stay informed about children with special needs. Check reliable sources and learn how you can help.

• • National KIDS COUNT Project — One of the best available resources on the economic, physical, educational and relational well-being of children and families in the United States, this organization focuses particularly on those who are vulnerable and at-risk for poor outcomes.
  • http://themighty.com — A weekly, free newsletter that encourages and enlightens families with special needs children.

• Suggested reading: “Chosen for Charlie: When God Gifts you With a Special Needs Child,” by Jan Forsthoff. A transparent insight into the author’s journey of faith as she realizes God chose her to be the mother of a special needs child. “Hope Unfolding,” by Becky Thompson. Being a parent or grandparent is an awesome responsibility. God will give you the answers when you doubt your own ability.