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I've met adults with intellectual disabilities or Down syndrome who have lived their entire lives under the care of their mothers—mothers who couldn't engage with their children in the outer world. It's heartbreaking to see that the moms, as they become seniors and can no longer care for their aging children, realize that their sons or daughters don't know how to interact with others, how to adequately care for themselves or how to live in any meaningful way in their communities.
As a mother of a kid with Down syndrome, I understand the fears that come with sending your child into a world where they may not be able to speak up or defend themselves when needed. I think about it all the time. It's hard to trust they are loved and safe when they are away from us. I get it. And slowly the world around us is getting it, too.
It was not long ago that families with children with Down
syndrome were encouraged to place their kids in special living facilities; the Global Down Syndrome Foundation called them inhumane institutions deprived of education, health care, and even plumbing. It was clear that the lives of those with
intellectual disabilities were considered less valuable than those of typical
children. The practice also confirmed a great misunderstanding and ignorance regarding
those born with genetic differences. People who chose to raise their children themselves did so in an unwelcoming world that labeled their kids.
No mother should find herself struggling to keep her child safe as she is preparing for her own death.
From being key targets in eugenic movements (like Hitler's mass murder of about 200,000 people) to doctors refusing to perform lifesaving procedures, people with intellectual and developmental disabilities were consistently and shamefully mistreated.
Only in recent decades have we seen our society open its arms to
people with differences. I'm glad that today, my son can live in a place where intellectual
disabilities are increasingly welcomed into the mainstream and that we see
people with Down syndrome working in the community, out with family and friends
and in schools with typical children. The condition is now the subject of many
documentaries and talk shows—those with Down syndrome are even the stars of the
A&E program "Born This Way."
Legislation like the Americans with Disabilities Act makes it
possible for people with Down syndrome and countless other disabilities to
receive the support they need to live empowered lives. This act ensures that
people with special needs are included in the social fabric, and that they receive
adequate education and financial resources. This law was enacted in 1990 during
the Bush administration, and it was a great stride forward that changed the
lives of those with disabilities in many ways.
While times are changing, there is still a generation that grew
up without the tools and attitudes we have today. When I meet families like
this, I know how important it is that we continue to open our minds and hearts
to create safe and creative environments for all people. No mother should ever
go it alone as she raises a child; no mother should find herself struggling to keep her
child safe as she is preparing for her own death. There is always more work to
do. With this in mind I encourage you to become familiar with programs in your
child's school that create integration and fellowship with students in the
special needs classes. Encourage your children to get involved and build
friendships and alliances with kids with intellectual differences. It will
enrich everyone's lives. This is how we build inclusive
When I shop at my local Trader Joe's, It warms my heart to see one of the the adult men with Down syndrome helping customers to their cars. He is so
happy, as made clear by the smile glued across his face. He is able to do this
because his family made provisions, and his community involved him in
activities and experiences that prepared him for what he does today. He's also able to ride public transportation alone. It may seem everyday to everyone else, but this—like many other tasks—is a great accomplishment for some
people with intellectual disabilities.
Every person who is capable of these
strides in life should have them available to them. And it's possible with the right education, support programs and tools for families. So please, reach out, get involved, show support and see what blossoms.