Special Care for Special Needs

Handicapped and crippled used to be terms for the disabled and now “Special Needs has become an umbrella underneath which a staggering array of diagnoses can be placed. Children with special needs may have mild learning disabilities or profound mental retardation; food allergies or terminal illnesses; developmental delays or serious psychiatric problems. (Terry Mauro, About.com)

In almost every community in the United States there are parent support groups and other community organizations directly involved in providing services to families with the aim of achieving full inclusion in the social and educational life of the community for special needs children. Easter Seals www.easterseals.com is the leading non-profit provider of services for individuals with autism, developmental disabilities, physical and mental disabilities and other special needs. It was founded in 1919 in Ohio by Edgar “Daddy Allen, a man who saw that children with disabilities were often hidden from public view. In almost 90 years Easter Seals has influenced the lives of 54 million Americans.

One of the conditions that deserve education is Down syndrome. Currently with the increase of premature births and more women having babies later in life, the incidents of developmental delays and Down syndrome are on the rise. Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome representing approximately 5,000 births a year. Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. Research is making great strides in identifying the genes on chromosome 21 that cause the condition’s characteristics and the full educational potential of people with Down syndrome is still being discovered.

How many parents of special needs children know of the benefits of babywearing? In 1985 Dr. William Sears and his wife Martha began their personal study on the beneficial effects of babywearing on babies and their parents. They noticed that cultures throughout the world carried their babies in slings and heard parents in their practice say, “As long as I carry my baby she’s content . The Sears raised eight children, among them a Down syndrome boy, and together introduced this style of parenting. After 30 years practicing pediatric medicine they have answered questions from thousands of parents and millions more have sought advice through their more than 40+ books, articles and appearances. www.askdrsears.com

The thesis of this ancient tradition is that biologically babies need to be carried in order to thrive. Research shows that the simulation of constant contact helps babies sleep more peacefully, nurse better, gain weight better, enjoy better digestion, and enjoy positive physical and emotional advantages for both the parent and child.

Here are two testimonials from mothers who used a carrier with their Down syndrome babies that illustrate the benefits:

“Hi! Just to let you know that my baby girl (we named her Christa
Joelle) is now 3.5 months old and happy to share that despite her
having Down Syndrome we’ve been babywearing her since she was just
8 weeks old

~Jennifer

“I have three boys and have been wearing my babies for over 11 years. Keeping my babies close to me for easy access to nurse and comfort was very important to me as a parent. I must say, I never felt like I had children who cried all the time or where just unhappy. I totally met their needs by wearing them. My 3rd son Sam was born with Down syndrome. I treat Sam no different than my other children with the exception I had to make a few modifications with my babywearing because of his low tone. One of my favorite ways to carry Sam is on my back. I reviewed all of my carriers with Sam’s Physical Therapist to find the carrier that gives Sam the most support through his bodice, allows hip flex and he can move his arms freely to use his “Sign Language” while on my back. It’s funny; I can feel him signing sometimes on my neck. Sam is now 3 1/2 yrs old and weighs 29lbs and is 33″ long. Although Sam can walk, he tires very easily, so my carrier is always in my reach. This soft structure carrier is a win win for me, Sam and his therapy team. I can’t imagine any other way of parenting.

~Holly Pennell-Salegna, CLC, HBCE
Certified Lactation Counselor

Today nearly nine million children in the United States have special health care needs touching one in every five families. Individual mothers have made big differences in how these children are perceived. Eunice Kennedy Shriver is an example of what one woman can do. She began her journey to improve the health and well-being of people with disabilities in the late 50’s and early 60’s. She believed, “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love. This calling led to her creation of the Special Olympics and proved that the disabled could have their own sports events. Upon her death in 2009 the NIH was renamed the “Eunice Kennedy Shriver National Institute of Child Health and Human Development . This tribute to one woman who made such a difference is an inspiration for each of us.

Love and joy are transmitted from one person to the other no matter what abilities or disabilities we have. To quote Edgar “Daddy Allen, “We have but one life to live. We get nothing out of that life except by putting something into it. To relieve suffering, to help the unfortunate, to do kind acts and deeds is after all, the one sure way to secure happiness or to achieve real success. Your life and mine shall be valued not by what we take‚Ķbut by what we give. So let us ask, “What contribution might we make to a child with special needs that we might equally beam with pride and love?