World Down Syndrome Day on March 21 was created for public awareness, promoting fundamental freedoms, and encouraging inclusion for individuals with Down syndrome.
Many know Down syndrome is a genetically-based condition resulting in a range of mental impairments and developmental delays. Its official term, Trisomy 21, is caused by an unusual division of the two 21st chromosomes into three. Hence, the term Tri-somy 21. So March is the third month, and the 21st day designates World Down Syndrome day.
Scientists hypothesize the chromosomal change happens at conception, and currently, there is no known cure for Down syndrome. I could go on with boring scientific stuff, but I won’t. But believe me, life with a child with Down syndrome is anything but boring! Having Heidi in our family has been a joyous adventure.
From that adventure, I offer “21 Tips” to parents and families who have a loved one with Down syndrome, to help keep their adventure always moving “up.”
1. Shook up: Be prepared for various reactions when others hear your baby has Down syndrome. Everyone’s present is a composite of their past, and they see the future through that lens. For example, my father was raised when disabled people were not treated well, and he was shook up when he heard our news. As a scholar of the Old Testament, he suggested our family Fast and pray to cure Heidi’s mongoloid condition. (His old-fashioned term.) I believed in miracles, but felt our family was meant to experience both growth and joy. (Grandpa Bob became Heidi’s biggest fan.)
2. Pass up: A gift of stronger health is established by mothers turning from baby formula to breast-feeding for these fragile infants. Factories can never replicate the perfect meal for babies.
3. Count up: Statistics confirm formula-fed babies have more long-term health problems, especially chronic ear infections, requiring medication and ear-tube surgeries.
4. Pair up: The strain on a marriage with any special-needs child can cause it to crumble, so please recommit to your family. This may translate into attending appointments together, helping more with child-care, and going on dates as a couple, etc.
5. Speak up: Special children often need specialized equipment. Most family and friends will happily give baby gifts of money — if they know of the need.
6. Set up: Infants with Down syndrome have low muscle tone and require certain exercises. Busy parents know it’s smart to set up a schedule and charts. (However, let’s remember exercise is still as vital for these teens and adults.)
7. Hold up: Although it seems all right, allergy experts advise waiting to introduce solid food, especially wheat-based, until toddlers are older and robust.
8. Meet up: Sometimes parents feel isolated and overwhelmed, so seek others with similar experiences in parent support organizations, mother’s luncheon groups, or Down syndrome chat rooms.
9. Build up: People diagnosed with the syndrome tend to get ill easily, so building up their immunity with fresh food, quality vitamins, adequate sleep, less media, less junk food, and more exercise, is always wise.
10. Read up: What’s injected into an infant’s system matters. Prayerfully read various points of view about vaccinations. We know some can be helpful, some harmful.
11. Write up: Most grandmothers wish they had better accounts of happy experiences and milestones as a younger mom. Journaling doesn’t have to be eloquent, even a cute notebook helps track progress, digression, and especially heart-warming events.
12. Swap up: Don’t be afraid to switch doctors, teachers or schools. Proactive parenting makes a big difference.
13. Lock up: Some children crave intense sensory experiences and will jump off high places, rub their skin until they’re raw, or eat everything! Please lock up potentially harmful chemicals, etc.
14. Light up: These kids have the sweetest faces and give the best hugs, ever. Enjoy watching faces light up when your child enters a room.
15. Ease up: Parents, you can do countless things to help your child with Down syndrome, but remember the whole family, your health, and your finances. Choose wisely.
16. Link up: Involve your child in various community and neighborhood events, like Scouts, soccer and church, for example. You may need to help or “educate” sometimes, but it’s worth it.
17. Brush up: It’s easy to skip daily teeth brushing, but please don’t. Healthy teeth matter, and prevent expensive dental sedation appointments.
18. Dress up: Individuals with Down syndrome tend to be shorter in stature, plus have short limbs, so shopping for clothes can be challenging. I’m glad I know how to alter Heidi’s clothes. Check out Downs Designs Dreams.
19. Keep up: This is a long haul, so keep forming good habits — enabling your efforts to become easier.
20. Play up: OK, some things are impossible for your beloved child with Down syndrome to achieve (like being a brain surgeon), but always play up positive strengths. Praise persistence for what they can accomplish (like working at the hospital).
21. Lighten up: Remember, you can’t do it all. No problem. Notice the growth, see the joys, and feel the deep satisfaction. Good job!
Elayne Pearson, CAS, is an author, speaker and a Special-needs Preparedness Specialist. Email her at firstname.lastname@example.org