Friday, 06 November 2009
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Me, an advocate?
I know, I know, I promised no more heavy stuff. This isn't that heavy, maybe a pound or so. Hey, don't judge. I am exhausted and Emily is still fighting a cold. I don't have my best joke face on. On the Emily front, not really sure what is going on, but just treating the symptoms at the moment. She was so miserable trying to sleep last night that she finally decided to just give that idea up. Sadly, I was having no problems sleeping, but had to join her party. I know that just about the time I have to leave to run errands, she is going to pass out. It is just how it goes.
Now, on to the topic at hand.
Yesterday someone asked me if I belonged to any advocacy groups for people with disabilities. I answered honestly; no. I, as most of you know, support my local Down Syndrome Association via the yearly Buddy Walk (go Team Beauty Queen), but I have never actually reached out to any advocacy group. It isn't that I don't want to do so, it is just that in person I am really, really shy. Stop laughing Sarah.
I have had the pleasure of corresponding with other mothers of children with Down syndrome. One mother in particular has become a huge spokesperson in her area doing everything she can to raise awareness. I am simply in awe of her because I wish that I had the confidence to stand up and tell people our story.
Yes, I tell Emily's story here in the nice safe pages of my blog. I think we can all agree that this is very different than getting up in front of a roomful of strangers and speaking. The thought of that simply terrifies me.
I am just a mom who happens to have an extraordinary little girl. I appreciate the fact that you guys continually allow me to use this blog as my platform and always respond in such a manner that brings tears to my eyes. I have never really seen myself as an advocate, but I guess in many ways that is exactly what I am.
Ever since that question was posed to me I have been thinking about it. Am I doing all that I can to ensure that I bring awareness to those that have never dealt with Down syndrome? Am I taking the safe route by keeping it here in the security of my comfort zone? Most importantly, by speaking out on the subject am I taking the focus off Emily the person and placing it on Emily, the girl with Down syndrome?
That is all for now. I promise, funnier, less heavy blogs are coming.
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Comments (20)
I am sending you a cyber hug, you are good at what you do, heavy or not!
@kidzandK9z@xanga - Aw, thank you.
In your own way you ARE an advocate, just like you said. By being so vocal on the web (even if xanga is a small corner of the web), you've raised a lot of awareness here about Down Syndrome and living/dealing/handling it. You are good at it! Your love for your daughter is VERY obvious and that says a lot. So....I would say you are an advocate already. :D
I think you have proven time and again to your loyal readers that you arent making Em out to be "the girl with Down Syndrome". She is just like any other 2 year old, absolutely lovable but there are times when you want to kill her because she does things like keep you up all night when you cant nap the next day!
Raising levels of awareness on a personal level is admirable. My mother used to go to TASH (not quite sure what it stands for) all the time. I mainly asked that question, because I think my mother got sort of emotional support, ideas, and other stuff about raising my adopted sister. My mother was also a special ed teacher exclusively for quite some time.
I think that in general more should be done to educate people on children (and adults) with additional needs. But I wouldn't necessarily say it was your job to do it. You should concentrate on being the great mum that I know you are, and educating those who will be in Emily's life. It isn't as though there is some set way of dealing with children with downs syndrome. Lots of children have it but they are still individuals and you have to learn about them as individuals, the same as you would with any other child. People just need to be more aware of various conditions so that they can be more understanding when they come into contact with it. I am so glad I work with children and have had the chance to work with so many wonderful children all with varying abilities and some with special needs. I have worked with various children on the autistic spectrum and though they have the same condition they are not in the slightest bit the same children. I think that I may be rambling now... I hope you made some sense of what I just said!
My sister was very involved in educating others about children with special situations. (Her second son has multiple issues.) I think many people don't think much about it if they don't have a close relative, which is sad. Her biggest annoyance - besides comments and stares - were the healthy people who parked in handicapped parking spaces. Her son weighed over 200 lbs by the time he was in his upper teens and was in a wheel chair, so whenever she would see a healthy person pull into a handicapped reserved space, jump out of their car and run into a store, she would leave a brochure on their windshield explaining the purpose of the handicapped parking spaces!
God bless.
Every parents who adore their child that has down syndrome is an advocate. We can feel the bounding between you and Emily, and that's telling everyone how down syndrome is a blessing. You are an advocate since you give birth to Emily and by constantly showing us joy.
Not everyone is called to be very outspoken and raising awareness in a very public arena. You are doing your part through your blog and by raising a beautiful daughter, don't feel guilty. =]
I think that you're doing more in the advocacy department here than you would be if you were to join a group and speak infront of a room full of people. Very, very few, if any, people are going to haphazardly end up in a physical gather for awareness. But the internet...there are searches; not just by "Down Syndrome", but by any number of tags put on your blogs. Someone that might know little to nothing about DS may come here for another blog, end up staying and learning a lot about it...and falling hopelessly in love with Em. (It's happened at least once so far!!)
I agree with Sarah; you do an awesome job of representing Em as a beautiful, typical little girl...who loves to clear out the book bin in order to sit in it.
@Paul_Partisan@xanga - I sensed that was why you asked. It just started me to thinking and we all are learning that it can be dangerous when I think. I looked into a few support groups in the beginning, but just never seemed to make it there.
@filtered_sunlight - LOL, I lured you here with my tequila tag, I just know it.
@der_lila_Stern@xanga - I have told her multiple times today that she is lucky she is so cute. I am so tired.
Advocates come in all forms and your blog is a way to advocate by bringing awareness from all angles. In your posts we see You and Emily, your family's daily life with the "normal" day to day and the extrordinary challenges you face as well.
Spotlight and fanfare are not my thing either and there are plenty of other people who are gifted in these areas and enjoy activism on a very public platform. We all have our place where we feel most comfortable and if we venture out on occassion, great! but if we choose to do the most important thing we have been charged with, taking care of our families, that is just fine too. :)
@P1AutismMom@autisable - Thank you. That makes total sense.
@gwacemom - Yeah, well...it worked! LOL. That's what matters!
@filtered_sunlight - You are so right. I can't wait until March. Woohoo!
@gwacemom - Is it too early to start a count-down ticker?? LOL
@filtered_sunlight - Mine is hanging in the kitchen. We are going to have a blast.
Hey, in a way, blogging is public speaking. Your words can be read by anyone in the world. You are probably making a greater impact than you think :)
@TheCheshireGrins@xanga - You make a great point. I like using this venue because if I type something and it looks stupid I can always hit the backspace. Not so easy to do when talking. I really hope that in some small way my words make a difference.