Monday, October 08, 2012

31 for 21 - Day Eight

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.

I 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 Beth]

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 community.

Dear Friends,

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.

As 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 differently.

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.

So help 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 year.

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.

I 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.

Most 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 One!

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 with T21.

Reprinted with permission from the author.

Mary Beth......Thank you!


Anonymous said...

I got tears in my eyes reading your post. How right you are! My son falls into that little percent of ones that have feeding difficulties and most days it just plain sucks. Seven years old and still on a feeding tube (although he eats by mouth), he doesnt chew, or drink enough to survive, thus the feeding tube. He is still in diapers too and most people don't get it. I have kids at my older kids bus stop who make fun of him cause he's different so I stopped taking him to see his older brothers off. It just hurt too much to see that. His mom was right there and said nothing! But despite that, he is very happy! He now has 26 words in his vocabulary and has even has some phrases! Again, this post made my day so thanks!

Anonymous said...

I'd like to respond to the mother of the 7-year old boy still on a feeding tube and in diapers. Your son is beautiful and deserves to see his brothers off. The problem is with the older kids ---- if they make fun of him again, approach them and correct them. Right in front of their own mother! You are your son's advocate, those boys need to be corrected. It can be done politely, yet confidently. I bet it changes their behavior ---- and they may just remember it the rest of their lives. Talk to that mother also. Do it for your son. Let me know how it goes.

Nan said...

Absolutely wonderful post. Thank you.

RK said...

Great post, and poignant for so many of us.

For the mother of the 7-year-old who doesn't chew...I wish she'd email me!!! I have an almost 6-year-old in that chewing-issue boat and I've never found another who struggled this much to this age. I'd sure love to connect, if you happen to see this. braskasmom atG mail. com

P said...

Excellent post and the connecting applies to the little ones too--families digesting the diagnosis & facing early struggles medically, emotionally or with extended family.

I have a long to do list that includes just THIS type of meetings and I have felt that the ASL is sooooooo important as noted to talk to peers and have peers communicate to each other. Kids developing at more advanced paces can help those at other stages. Caring for the elderly population with and without DS is a skill we could all work on - again, all of us with & without DS. It's one of those less desirable but incredible jobs.

The unfortunate reality is that regardless of the skills & abilities, at this point early onset Alzheimer's will face all of our families barring a cure between 40 & 60 years old. It's a whole life well or challenged but in the end and for many without DS we all need help & become disabled most likely.

There is a new DS author whose book highlights love OVER abilities. It's EXACTLY your friends comment I haven't read the book but the interview in the blog with a little moxie (it was interviewing two authors of amazing DS stories) from August I believe was INCREDIBLE. No time to hunt links but check out or contact the moxie mom!

I would LOVE to see this post go viral. :)

Shelley said...

What a wonderful post...I cold really relate to it...thank you for sharing it.