Four years ago, on the first list serve I joined when I was pregnant with Emma Sage, a Mother posted a thread that touched my heart in many ways.
e-mailed the author of the post to first, say "Hello"
and that I was so glad that she came out of 'just read' and posted to all of us
on the list.
Her words are very poignant and speak for so many in our
community ~ A community of Mothers, Fathers, Family, Friends who love and care
about someone that has Down syndrome.
During this month, I have been
sharing Emma Sage and her day-to-day adventures. I have also been sharing links
that I have come across and news articles.....but I do believe that this post
will be my most important post in sharing during Down syndrome Awareness Month
[thanks to the permission of the author.......and my new friend, Mary
As you read this post, know that even though some of our children
have greater struggles than others, each and everyone of our children are our
blessings and are loved dearly........and we are above all a
Although I go back many years
as a member of this list, I have mostly been reading only for a long time. Like
many others, my 18 year old son has autism as well as Down syndrome.
we enter the closing stages of "Down Syndrome Awareness Month", I wanted to take
a moment to ask you to be aware of the entire community of those of us with Down
syndrome or living with someone with DS.
I know that there are families out
there who have such seriously ill loved ones with DS who simply don't feel like celebrating much
of anything right now. Those of us who have seen our loved ones though a
life-threatening illness ourselves- can we take some time to just be with those
families? And if our loved one with DS has never had such a crisis, all the more
reason to see if there is some way you can show your gratitude- by reaching out
that helping hand.
Some of us have that family member with Down syndrome
who is grown, or nearly so- and does not speak using words. True conversations
will never be a reality. All the speech therapy in the world will not make it
so. For these families it can be a stretch to want to join in with a charming
list of accomplishments or funny anecdotes. For these families, celebrating
DS awareness month
means that some people care enough to learn the signs or communication methods
that facilitate other ways to communicate.
Some of us have a loved one
with DS who "still"
is not walking- or not using the toilet independently, or not able to eat be
unhooked from a feeding tube, or eat what everyone else commonly eats. Some have
a chronic and debilitating illness (such as diabetes or the effects of a stroke
or other illness) that requires monitoring their health and well-being- 24/7.
Down Syndrome Awareness month might mean taking time to slow down so that these
loved ones can have their personal hygiene and/or dietary/and/or movement needs
attended to with dignity and the extra time required.
Some of us have a
loved one with DS who
is not able to leave the house due to agoraphobia or other anxieties, or perhaps
has behaviors that cause injuries to self or others. I know that there are
families on this list who have not been able to leave their loved one with DS even for a few hours -
for over 20 years. Some of that is due to lack of funds but some of it is due to
lack of energy to go find and train the right support person. Do you know of a
family like this in your local DS community?
Some of us have a loved
one with DS who will
not be going to college after high school. We have a young adult with DS who lives with us who
does not comprehend what a job entails, or that you need money to buy stuff, or
cannot work with more than one or two others nearby. Some of us have a loved one
with DS who loved
being in school but became lost after those full, planned days were behind them.
They saw their siblings or classmates move away and then the constraining arm of
lack of people support, financial support, transportation support, etc., cast a
harsh light on an uncertain future. Or their own self awareness about having
Down syndrome makes it unlikely that they will drive a car or have a baby or,
or, or....and the depression crashes down and colors everything quite
This is not to diminish or downplay anyone's accomplishments
or dreams for the best possible future. In truth, I LOVE hearing my friends
share their stories and I love the "brags" - most of the time. I don't want to
rain on my friends' parades with sorry stories of my son's life sounding -um, a
little grim some days. But my friends who have e-mailed or called saying,"are
things going any better? Can we get together for a little fun? Or just, "I am
sending virtual chocolate by the case!" just acknowledge that my son's
accomplishments are going to look quite different by comparison.
us celebrate every step forward, even if it be millimeters and not feet. Call us
if we haven't been seen at community events for a while, or if our child is now
in a segregated school program due to that thing that happened last school
My reason for writing this is that I am ALWAYS aware of our somehow
having to declare our children's "worthiness", for lack of a better word. We are
always declaring that they CAN talk, walk, make good choices, go to college, get
a job, live on their own, etc. We take offense at anyone implying that the vast
majority of people with trisomy 21 are developmentally disabled, (oops,
wrong lable) -or
cognitively impaired (well, can't use that word impaired, either....) We decide
to take offense if someone wonders out loud if our children are taking "life
skills" instead of academic courses, or if they are doing those demeaning jobs
that "no one else wants", [so our kids shouldn't either], or that we should
insist that they go on to college, even though the last few years of high school
were a bust.
We ARE afraid to say very much about some of the tough spots
some of us face, because we don't want to scare the new parents. (And I don't
blame us for not wanting to do that, but...) we can't pretend that everyone will
grow up to be the prom queen or nationally known actor or even the young adult
that hits the speaking circuit with their mom or dad for their local DS association.
suggest to parents of very young children with DS: get to meet adults with DS, and their parents and
families, if you can. Spend time with them and cultivate a relationship with
them. While their early childhood experiences will not be the same as the
opportunities afforded yours, you will likely get the stories that can help you
along the way for what your child's future might look like.
importantly, you will find that some families who appear to face the most
daunting challenges somehow find a way to laugh, or develop or a sense of dark
humor, or deep faith, or other way to cope. Some families do succumb to what
seems like insurmountable pressures and challenges.
During Down Syndrome
Awareness month, how can we simply walk with some of our DS community members who
struggle or have dropped out because they have lost their sense of belonging?
Perhaps the simple act of calling that mom you haven't seen for the past year
and asking " how are you doing these days?" and then listening could be the
first step to your own awareness in a new way.
God Bless Us, Every
Mary Beth Paul
PS. The most amazing book that should
be on every new and old parent's must read list is Mental Wellness in Adults
with Down Syndrome. Google the title for more info. Its authors paint a loving,
practical, and very real portrait of the similarities and variations among those
Reprinted with permission from the
Mary Beth......Thank you!