By Elayne Pearson, CAS, Speaker/Author/Disability Advocate
World Down Syndrome Day, March 21st – 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. It’s 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. Get it? Trisomy 21 on 3/21. Clever, huh?
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! We testify of that. Having Heidi in our family has been a joyous adventure for almost 30 years.
I offer parents “20 Tips” to help “keep it up.”
- 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 joys. (Grandpa Bob became Heidi’s biggest fan.) In contrast, when I told my friend, Jeanie, about our newborn, her eyes brightened up as she excitedly told us about her cute neighbor, Janet, a sweet adult with Down syndrome who lives with her parents and that despite the challenges, have a good “quality of life.”
- PASS UP ~ A gift of stronger health is established by mothers turning from baby formula — to breast-feeding these fragile infants. Factories can never replicate the perfect meal for babies. I really feel like “mother’s milk” helped Heidi become stronger, healthier, and more engaged as baby and toddler. Since she was premature, plus babies with Down syndrome are generally slower to grow, I was grateful I could nurse little Heidi for well over one year, and lay a good foundation.
- COUNT UP ~ Statistics confirm formula-fed babies have more long-term health problems, especially chronic ear infections, requiring medication and ear-tube surgeries.
- PAIR UP ~ The strain on a marriage with any Special-needs child often causes it to crumble, so please recommit to your family. This may translate into attending appointments together, helping more with childcare, and going on dates as a couple, etc.
- 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, so don’t be afraid to be honest.
- SET UP ~ Infants with Down syndrome have low muscle tone and often require certain exercises. Busy parents set their schedule and use reminder charts. Let’s remember exercise is still just as vital in their teen and adult years. (I think we’ve all seen quite a few “couch potatoes” among this adult population.)
- HOLD UP ~ Although it seems alright, Allergists advise waiting to introduce solid food, (especially wheat-based), until toddlers are older and robust. Dairy and corn may be problematic for digestion, too.
- MEET UP ~ Sometimes parents feel isolated and overwhelmed, so seek others with similar experiences in parent support organizations, Down syndrome chat rooms online, or special-needs play groups. In my community, we busy moms decided a mothers’ luncheon group worked best while our sweet students were in school! (Finding babysitters for 12-year-olds can be tricky.)
- BUILD UP ~ People diagnosed within this 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. It’s often challenging to get a handful of vitamins, minerals, and herbs, etc. down these kids, but blended into banana smoothies can be helpful. Powdered supplements from the health food store (mixed with ice, water, etc.) are also a family-friendly way.
- WRITE UP ~ Most grandmas 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.
- SWAP UP ~ Don’t be afraid to switch doctors, teachers, care provider, or schools. Proactive parenting makes a big difference.
- LOCK UP ~ Some children crave intense sensory experiences and may jump off high places, repeatedly rub their skin, or eat anything, etc. Please secure chemicals, sharp objects, and potentially harmful items. (We were surprised how smart Heidi was in finding hidden things!)
- 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. This is what it’s all about.
- 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.
- LINK UP ~ Involve your child in community and neighborhood happenings, like scouts, art, soccer, dance, and church. You may need to help, or “educate” sometimes, and it’s worth it.
- BRUSH UP ~ It’s tempting to skip daily teeth-brushing, but please don’t. Healthy teeth matter, and this helps prevent expensive dental sedation procedures. I highly caution against accepting gray amalgam dental fillings, as they leak mercury vapors. Heidi tested high in toxic mercury. Read more at www.mercola.com
- DRESS UP ~ Individuals with Downs tend to be shorter in stature, plus have short limbs, so clothes shopping can be challenging. I’m glad I know how to alter/hem Heidi’s clothes. Check out Downs Designs Dreams.
- KEEP UP ~ This adventure is a long haul, so keep forming good habits — enabling your efforts to become easier.
- PLAY UP ~ Okay, some things may seem impossible for your beloved child to achieve (like being a brain surgeon), but always play up positive strengths, and praise persistence for what they can accomplish (like working at the hospital).
- LIGHTEN UP ~ Remember, you can’t do it all. It’s okay. Notice the growth, see the satisfaction, celebrate the achievements, and feel the joy. You’re doin’ good!
Take care, and God Bless.
(NOTE ~ This blog/article may be copied and freely distributed to parents – however, please include author’s name and contact information.)
Elayne Pearson, C.A.S., Special-needs Preparedness Specialist is an author, national speaker, newspaper columnist, and natural health consultant.
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