Today I asked a friend of mine, Stephanie, to share an array of resources for mothers with Down syndrome children or mothers who are pregnant with a Down syndrome baby. Stephanie’s oldest son, Andy, has Down syndrome. Stephanie is quite involved in the Down syndrome community and is a huge advocate in sharing her amazing knowledge and resource with other moms like herself. She recently published a book that is available for free to anyone who wants basic, up-to-date information called, Understanding a Down Syndrome Diagnosis. Pretty much this is what modern moms need to know about Down Syndrome. Thanks, Stephanie for sharing!
When I was 23-years-old, I had just graduated from college, started my first real job for a software company, and I was pregnant with my first child — a baby boy. When my husband and I first learned that our baby had Down syndrome four hours after he was born, we were overwhelmed, lost, and confused. Would he ever be able to live on his own? Would people be unkind to him? How could we afford this? Would we be able to have any more children? Fundamentally, we desperately wanted to know what life would be like for him … and for us.
Top 5 things you might not know about Down syndrome today…
1. Most people with Down syndrome have a mild to moderate intellectual disability and receive early intervention (from birth to three) and special education services at school to help them achieve their goals. These services can include speech therapy, physical therapy, occupational therapy (fine motor skills), modified curriculums, teaching assistants, small group work, etc., and more often these services are provided in an inclusive setting. There are also approximately 250 college programs for people with intellectual disabilities.
2. The average life expectancy for people with Down syndrome has more than doubled since the 1980’s to about 60 due to improved healthcare.
3. About half of babies with Down syndrome have a congenital heart defect — but most can be corrected in the first two years. In fact, according to Cincinnati Children’s Hospital, the success rate of one of the most common heart defects is nearly 97%. Babies with Down syndrome also have higher chances for hearing or vision problems, respiratory infections, hypothyroidism, and feeding or digestive issues. A typical newborn with Down syndrome usually has one or some of these health challenges, but not all of them, and most are treatable. For example, my son takes thyroid medicine for hypothyroidism and wears hearing aides to school due to mild hearing loss.
4. New research shows that 94% of older siblings feel proud of their brother or sister with Down syndrome, and 88% feel that they are better people because of their siblings with Down syndrome. In addition, nearly 99% of people with Down syndrome said they were happy with their lives and over 96% said they liked who they are and how they look.
5. There is a registry of about 200 families interested in adopting a baby with Down syndrome at the Down Syndrome Adoption Network.
» Tell me… Do you have a child with Down syndrome? If not, do you have a friend or know of someone who has Down syndrome children?