Sunday, October 26, 2008

31 for 21

The other day, 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...

Thanks to both of you! I know that I am blessed doubly and sometimes I feel guilty about it actually! But I appreciate the suggestions and the wonderful conversation.

mum2brady said...

Wonderful post TM - thank you - and Mary Beth!!!

datri said...

Thanks so much for posting this, and thanks to Mary Beth for writing it. Kayla is four and also has Down syndrome and autism and will probably never be "high functioning". I've sort of withdrawn from the general DS online community because sometimes Kayla is just SO different I wonder if others understand. And I also don't want to scare new parents. So, right now blogging is my support.

ntmjbmom said...

That was so true..and deeply moving.


Chris said...

Thank you for sharing this. It needed to be said for so many reasons. As a relatively new parent, it didn't scare me. Instead, I said, "Finally, some honesty, a complete picture of what Ds can mean." We need to be here for each other, regardless of where our children may fall on the Ds spectrum.

SunflowerMom said...

Thank you for sharing this. Very well written reminder, Mary Beth.

Cleo said...

Mary Beth and Tara, thank you so much for sharing this heartfelt and honest post!!!.
I feel that the most important thing is to love individuals (all ages) with Ds unconditionally. We need to accept them for who they are and embrace and celebrate their lives. I don't think is so important how much they can accomplish or not. I believe with all my heart that all of them can reach their "own-unique" fullest potential and with our help and support their lives can be as healthy and happy as possible. I also believe with all my heart that we are all in this world to help an support each other in our journeys. :)

Kari said...

Thanks for posting this TM and Mary Beth for writing it. I really enjoy seeing all the success stories about people with DS but at the same time I like to hear about everything. The good the bad and ugly. This is what I considered calling my blog. I don't wish to write about things concerning Tristan that will frightened a new or expecting parent. I also don't want to sugar coat things and glamorize the rough times either. While reading this all I could think was hurray for you Mary Beth. It's refreshing to read something that is real and factual and from the heart. When Tristan was first born and I met so many others online that also had children with a little extra Chromosome. I felt I was embraced and welcomed into this new wonderful community. We should all stick together!