Awareness is a stupid word.
There, I said it. This is my annual blog challenge, of making a post every day in honor of October being Down Syndrome Awareness Month.
I know this is silly, since I just promoted Childhood Cancer Awareness Month. But it's a little different, stay with me...
Some awareness months make more sense. Like: "Hey, it's important to make sure you are aware of how your body works, so you can make sure you aren't broken." Breast cancer, heart attacks, prostate cancer...stuff like that. Also, awareness that promotes being involved to help research funding, that is reasonable.
Others are dumb. "Hey, something like this exists outside of you and your circles of 'normal'." Most people already know that. You know how I know? Because my kid gets crooked looks whenever we go out. Anywhere. People are darn sure aware she is different. They may or may not know why, and the medical jargon of what causes her to be different is almost worthless at changing perception. That eliminates only those who think they might catch her different-ness.
I am also aware that I am not 5. I cannot catch being 5. I understand what causes being 5. I understand that being 5 is different than being 38.
So. Big whoop.
I confess, I am spoiling for a fight, a little, this year. I am done begging for you accept that my gal exists and I am proud of it. I am requesting that you choose to understand, and better your life for the knowledge.
If we did say, Down Syndrome Celebration Month, or Down Syndrome Appreciation Month, I think I'd be more excited.
Being aware that somebody is 5, is different that appreciating what it is to be 5 and the magic that inviting a 5 year old to share their perspective in your life. 5 year olds can play with abandon. They don't care what people think. They can create anything, they suffer no barriers of why something could not work. They get excited by things that you take for granted. They get ecstatic about things that annoy you. They aspire to do the fantastic. Their imagination is limitless. They are lucky. You should aspire to incorporate their "joie de vivre" into your dumb, boring, "adult" life.
Being with a 5 year old invites their perspectives to unravel your barriers, to grow you past others' strictures on you, and to reactivate your imagination. It's terribly cool. And you are reminded what you valued when you were 5. You are refreshed. (After you sleep off being tired from growing and changing so much, so fast, of course.)
Well. Guess what? Being with someone who has Down Syndrome can regenerate things in you, too. They are awesome. They are remarkably like other nice, boringly normal people.
Because of all the medical jargon, they have to fight a little harder for "normal" and it may take a little longer, but they can achieve what you can. But because the achievements in their lives were a little more like a Spartan Run, instead of a rolling walk through a meadow, their triumph is palpable.
Because their training for the Spartan Run of life was more rigorous, they may be more focused and aggressive and (dare I say it?) stubborn. They are also people. Tired, pushed, and aware. And they want to achieve what you do.
Guess what? You need to take this October to understand their training, their battle, and swear to come along side and cheer. And sign on as training partners. Offer experiential advice. Offer support. Offer water. And see the mud in their lives as a sign of their mammoth achievement, not as a sign that you are better or different. See it as a sign that you should give your respect. Offer camaraderie, not pity. They don't need that any more than a rock in their shoe. If all you are going to do is stick rocks in their socks and put obstacles in their way, get out. And know this, when they overcome your barriers, which they will, you won't be making them look bad, you will look small and selfish, and they will look triumphant.
So. Forget awareness. Sign on for appreciation or celebration. Or accept that your life will be the less for not "accepting" them.
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
Wednesday, October 1, 2014
Thursday, October 10, 2013
31 for 21: Abuse and Awareness
I know it feels like I come back around to this regularly...but this is something that every parent should be aware of. And parents of kids with special needs, even more so:
In 2011, I addressed the legitimacy of my deep-seated paranoia about protecting my kids. I spoke of the statistics and the importance of watching your child and communicating with them, and responding if the unthinkable happens. HERE
Just this March, I went on a complete tear about abuse and what YOU should be doing if your Down Syndrome "Awareness" is really "Real". How it's YOUR voices and your conversation with your kids and your votes and your phone calls that make a difference to protect those that need it desperately. HERE
I want to reiterate that it is YOUR voices that must be heard when things happen to children that no child should suffer and NO ONE should close their eyes to. Like HERE just this last September in Florida.
This morning, another friend shared her own path in dealing with the statistics and the consequential responses, at The Bates Motel...and she referenced this really excellent list of things that you can do to protect your child. Typical and those with special needs.
Praying for Parker originally shared the list:
"1. Start early. Introduce correct terms for body parts. This way a they can report clearly if someone engages in sexual misbehavior.
2. Introduce body privacy. NO ONE is allowed to tickle or play around with the private parts of your body. To counter any attempts at or*l s*x include the mouth as a private body part. NO ONE is allowed to put anything part of their body into your mouth.
3. Make it clear that if someone breaks the rules about body privacy, YOU (the parent) need to know about it.
4. Teach your child to stand back and hold out their arms and say – in a BIG LOUD – voice and say, “NO! STOP THAT!” “IT’S NOT ALLOWED!” Practice saying NO! assertively.
5. Practice distinguishing secrets to keep and secrets that must be told. Children and adults with intellectual disabilities often think they can tell good secrets but have to keep bad secrets cause telling a bad secret might make someone feel bad.
6. As sex abuse is about power, work to empower your child with independence in dressing and toileting.
7. Develop and practice problem solving skills. Role play different situations and how your child should react in them.
8. Bear in mind that if your child lacks physical affection, approval and attention, they become more vulnerable to predators.
9. Develop social skills. Personal space. Eye to eye contact. Make sure your child knows their phone number and address.
10. Often children with special have already developed a passivity to adults, especially to caregivers and other professionals. Teach your child it is okay to stand up for themselves.
11. With non-verbal children consult a speech therapist for communication symbols for sexuality.
These aren’t my ideas. They are from another Mama who is working with Dr. Freda Briggs, a renown abuse prevention expert on strategies to keep our kids safe from predators."
I certainly plan to add several of these to my own running education of Elise. I hope you will too.
In 2011, I addressed the legitimacy of my deep-seated paranoia about protecting my kids. I spoke of the statistics and the importance of watching your child and communicating with them, and responding if the unthinkable happens. HERE
Just this March, I went on a complete tear about abuse and what YOU should be doing if your Down Syndrome "Awareness" is really "Real". How it's YOUR voices and your conversation with your kids and your votes and your phone calls that make a difference to protect those that need it desperately. HERE
I want to reiterate that it is YOUR voices that must be heard when things happen to children that no child should suffer and NO ONE should close their eyes to. Like HERE just this last September in Florida.
This morning, another friend shared her own path in dealing with the statistics and the consequential responses, at The Bates Motel...and she referenced this really excellent list of things that you can do to protect your child. Typical and those with special needs.
Praying for Parker originally shared the list:
"1. Start early. Introduce correct terms for body parts. This way a they can report clearly if someone engages in sexual misbehavior.
2. Introduce body privacy. NO ONE is allowed to tickle or play around with the private parts of your body. To counter any attempts at or*l s*x include the mouth as a private body part. NO ONE is allowed to put anything part of their body into your mouth.
3. Make it clear that if someone breaks the rules about body privacy, YOU (the parent) need to know about it.
4. Teach your child to stand back and hold out their arms and say – in a BIG LOUD – voice and say, “NO! STOP THAT!” “IT’S NOT ALLOWED!” Practice saying NO! assertively.
5. Practice distinguishing secrets to keep and secrets that must be told. Children and adults with intellectual disabilities often think they can tell good secrets but have to keep bad secrets cause telling a bad secret might make someone feel bad.
6. As sex abuse is about power, work to empower your child with independence in dressing and toileting.
7. Develop and practice problem solving skills. Role play different situations and how your child should react in them.
8. Bear in mind that if your child lacks physical affection, approval and attention, they become more vulnerable to predators.
9. Develop social skills. Personal space. Eye to eye contact. Make sure your child knows their phone number and address.
10. Often children with special have already developed a passivity to adults, especially to caregivers and other professionals. Teach your child it is okay to stand up for themselves.
11. With non-verbal children consult a speech therapist for communication symbols for sexuality.
These aren’t my ideas. They are from another Mama who is working with Dr. Freda Briggs, a renown abuse prevention expert on strategies to keep our kids safe from predators."
I certainly plan to add several of these to my own running education of Elise. I hope you will too.
Tuesday, October 8, 2013
31 for 21: Voices of Awareness
I have a challenge for you that will take all of two minutes, over the entirety of a year. Seriously.
This blog has had 366 posts (not all mine). This blog has 106 followers and 308 people like it and follow it on Facebook...It has had thousands of individual views. There has been a grand total of 608 comments on it. That means in 3.5 years, in average, each person has commented less than twice. Sure there have been more on the Facebook page, but not enough to skew the numbers much...
I started writing this blog to help folks know and understand better what actually goes on in our life. Personally, and as a family, coping with an older child with special needs. I had honestly hoped that there would be more questions asked of us, more dialogue, more discussion. I had hoped that there would be more camaraderie amongst us folks with the special kids.
Don't get me wrong, I don't post on the blogs I follow NEARLY enough either. And I will be abiding by my own challenge, BUT...
This year, as a part of your new awareness, could I beg that you comment on this blog? Only once a quarter? I need to know if I am getting it "right". I need to know if you want to hear what I have to say. I need to know if you have questions that you want answered but are afraid to ask. I need to know, most importantly of all, that my words and story have made an impact on how you view people with disabilities, and their families... It doesn't have be deep. It doesn't have to be huge. Just 30 seconds, every 3 months, click, done. Even the "Like"s on Facebook make me all giddy...
I would encourage you to do the same to other blogs you follow...and I would further encourage you to make a list of your friends dealing with *Big Stuff* and drop them a note each quarter inquiring how they are holding up or meet them for lunch...
When you are dealing with *Big Stuff* the Exhaustion often feels like the dark of a cave. It feels palpable, damp cold, deeply alone. The comments are whispers in the dark, the grand gestures of friends are the unexpected light, warming your way...
This blog has had 366 posts (not all mine). This blog has 106 followers and 308 people like it and follow it on Facebook...It has had thousands of individual views. There has been a grand total of 608 comments on it. That means in 3.5 years, in average, each person has commented less than twice. Sure there have been more on the Facebook page, but not enough to skew the numbers much...
I started writing this blog to help folks know and understand better what actually goes on in our life. Personally, and as a family, coping with an older child with special needs. I had honestly hoped that there would be more questions asked of us, more dialogue, more discussion. I had hoped that there would be more camaraderie amongst us folks with the special kids.
Don't get me wrong, I don't post on the blogs I follow NEARLY enough either. And I will be abiding by my own challenge, BUT...
This year, as a part of your new awareness, could I beg that you comment on this blog? Only once a quarter? I need to know if I am getting it "right". I need to know if you want to hear what I have to say. I need to know if you have questions that you want answered but are afraid to ask. I need to know, most importantly of all, that my words and story have made an impact on how you view people with disabilities, and their families... It doesn't have be deep. It doesn't have to be huge. Just 30 seconds, every 3 months, click, done. Even the "Like"s on Facebook make me all giddy...
I would encourage you to do the same to other blogs you follow...and I would further encourage you to make a list of your friends dealing with *Big Stuff* and drop them a note each quarter inquiring how they are holding up or meet them for lunch...
When you are dealing with *Big Stuff* the Exhaustion often feels like the dark of a cave. It feels palpable, damp cold, deeply alone. The comments are whispers in the dark, the grand gestures of friends are the unexpected light, warming your way...
(photo is of Bryce Canyon courtesy Frank May)
Thursday, October 3, 2013
31 for 21: Things You Don't Know #3
Things You Didn't Know #3
Did you know that you can love things for the possibilities?
I mean, we all know that lots of women get involved with men for their "potential" (for the record this is a load of hooey, don't do it!!)...Jerry Maguire, anybody?
Skip to right at 1:00
So, anyhow...
Elise loves books. She will still look at books, CHAPTER books, mind you, with no pictures...and stare at the words...and flip gently through them...and pet them, for the promise that the words hold.... For the stories that she knows they stand for.
Did you know that you can love things for the possibilities?
I mean, we all know that lots of women get involved with men for their "potential" (for the record this is a load of hooey, don't do it!!)...Jerry Maguire, anybody?
So, anyhow...
Elise loves books. She will still look at books, CHAPTER books, mind you, with no pictures...and stare at the words...and flip gently through them...and pet them, for the promise that the words hold.... For the stories that she knows they stand for.
Ever since Gabriel was a toddler, we have gotten Lego catalogues. I grew up with Legos almost as closely as I did books. So as soon as I had kids, I was on their mailing list.
About a year ago, Elise started begging for Legos. I bought a set and she tried to put it together and it was an exercise in frustration. I tried to encourage her to use Duplos, and she was completely insulted...and so I put it in a baggie in my pantry.
My husband found it this weekend as he was (what we affectionately call) "rage cleaning"...this happens occasionally, as I tend to visually clean...as in, I clean what I can see...and periodically, he finds a stash of "cleaned" stuff and he *ahem* takes it out for me to sort and do away with...
BUT I digress...
The Legos were found...and Charlotte got at them first...she tried SO hard to follow the directions, but ended up getting out her beloved Duplos... When Elise found them, she was ecstatic...and promptly pored over them for about 45 minutes. And built something.
THIS IS AMAZING. The fine motor skills that she has been fighting for for the last 10 years? Finally paid off for something that she WANTED.
The Legos are also little bricks of possibility. Just like words. They can be made into ANYTHING. They don't need to talk. Their actual goal is not "play", their goal IS the set up... Really, they are her perfect toy!!!
Wednesday, October 2, 2013
31 for 21: Things You Don't Know #2
Things you don't know challenge #2: Elise doesn't know how to play.
I know, right? How is that possible? She has the mindset of a toddler, she should be DROWNING in play and creativity....
I have chatted with several moms to older kids with Down Syndrome and this has come up several times, and it is not isolated to Elise...either they never really figured it out, or it was something that actually had to be taught, unlike with typical kids.
I question if it is one of those "loose wires"? Like not necessarily hand-in-glove with DS, but perhaps a fragile connection that may or may not be made thanks to inherent connection delicacy?
On one hand, she has no conversation skills. So it would make some sense that her toys don't converse. Many boys never acquire that skill, so perhaps that shouldn't be an indicator? I don't know, I am torn, I suppose. But she never tells her babies they are in trouble, or their day's schedule, or has any kind of discussion with them or amongst them. They make no sound effects. The cows don't "moo", the horses don't "neigh", her cats don't "meow"... nothing. It is silent.
She loves to set up for play. She will set up her dolls for a tea parties. She will change everyone's clothes for an outing that will never happen. She will line up coliseums of animals for her viewing pleasure. She will set up family herds of plastic animals. She will seat plushies for movie voting clout. But it will abruptly halt at the point of preparation.
Elise is ALL about sorting. All the brown puppies in one group, all the elephants in another, the furry ponies in yet another.... She will spend quite a while doing this and then drag you in to witness the brilliance and crow with pride: "They MATCH!"
Rules may or may not apply. She is either the Gestapo about the rules or completely disregards them, with no real prediction for why and when. This applies to tag, board games, computer games, and spontaneous verbal car games.
Sometimes I wonder if her ability to make friends would improve (with or without verbal capability) if she could figure out how to play....as that seems to be the most common glue in childhood...
And we are missing it...
I know, right? How is that possible? She has the mindset of a toddler, she should be DROWNING in play and creativity....
I have chatted with several moms to older kids with Down Syndrome and this has come up several times, and it is not isolated to Elise...either they never really figured it out, or it was something that actually had to be taught, unlike with typical kids.
I question if it is one of those "loose wires"? Like not necessarily hand-in-glove with DS, but perhaps a fragile connection that may or may not be made thanks to inherent connection delicacy?
On one hand, she has no conversation skills. So it would make some sense that her toys don't converse. Many boys never acquire that skill, so perhaps that shouldn't be an indicator? I don't know, I am torn, I suppose. But she never tells her babies they are in trouble, or their day's schedule, or has any kind of discussion with them or amongst them. They make no sound effects. The cows don't "moo", the horses don't "neigh", her cats don't "meow"... nothing. It is silent.
She loves to set up for play. She will set up her dolls for a tea parties. She will change everyone's clothes for an outing that will never happen. She will line up coliseums of animals for her viewing pleasure. She will set up family herds of plastic animals. She will seat plushies for movie voting clout. But it will abruptly halt at the point of preparation.
Elise is ALL about sorting. All the brown puppies in one group, all the elephants in another, the furry ponies in yet another.... She will spend quite a while doing this and then drag you in to witness the brilliance and crow with pride: "They MATCH!"
Rules may or may not apply. She is either the Gestapo about the rules or completely disregards them, with no real prediction for why and when. This applies to tag, board games, computer games, and spontaneous verbal car games.
Sometimes I wonder if her ability to make friends would improve (with or without verbal capability) if she could figure out how to play....as that seems to be the most common glue in childhood...
And we are missing it...
Tuesday, October 1, 2013
31 for 21: Things You Don't Know Challenge
One of my best friends said that I "had to do at least one post that includes facts about Down Syndrome that we were more than likely not aware of"...
Challenge accepted.
You can Google the features, medical issues, and disabilities that are par for the course with Down Syndrome. If I run out of ideas, I will do those...in the meantime:
Things that you don't think of when you think of Down Syndrome:
#1 Elise is a technology junkie.
Like my uncle who was always on the cutting edge cannot hold a candle to Elise, sorry, Mike! :)
She can open anything, freeze anything, lock you out of anything, play any game, win more than you should, and by-pass controls that you shouldn't be able to.
Rather than learn how to use her talkbox from the basics, she prefers to lock it up so that I have to call the company and find out how to unlock it...every single time she touches it.
She played Amelia's KindleFire for 10 minutes last night. When Amelia got it back her first words were, "Hey, Elise! You bought me a new background and the kitty I wanted!! Thanks!"
Amazon's Customer Service number is in my contacts in my phone. Why?? Because Elise has changed the language settings on her KindleFire, the security password, the Parental Controls password, the fonts, the Cloud password, and locked us out of it completely.
She has done much of the same on our computer.
She can upload photos from a camera to a computer.
She can change wallpapers. Screen savers. Icon placement.
She has been known to get from PBSkids.com to Shopzilla and save a host of her favorite items to a cart.
She cannot spell folks. She doesn't know her middle name. She doesn't know her phone number. She can read like a 4th week kindergartner.
THIS DOES NOT MAKE SENSE.
I am reminded of a quote by Ed Foreman, I heard as a kid, "Because of the size and weight in comparison to it's itty bitty wingspan, the bumblebee cannot fly. But the bumblebee doesn't know that, so it goes ahead and flies anyway."
Bumblebee, thy name is Elise.
Wednesday, March 20, 2013
socks? really?
At the risk of hacking off my peeps, I don't get the newest Down Syndrome Awareness "thing". It's called Lots of Socks. http://www.worlddownsyndromeday.org/lots-of-socks
Truthfully, I don't really get the whole wearing of colors to bring "awareness" for anything. A shirt printed with pride, a website marked on it....whatever, that makes sense. A color telling you to be "aware"? Really?
I participate in World Down Syndrome Day and the 31 for 21 blogging initiative for Down Syndrome Awareness, not for you to know about my kid, to be aware she exists...hey, you can look at her and realize she's not like all the other kids...it's so you can understand more about my fears for her, my child's triumphs and struggles, and maybe become more encouraging and supportive...maybe make a difference and a more inclusive future for her later...
Money is cool. Fundraising helps. But you want to know what helps more? Involvement. Support. Acceptance. Talking to my child and those with her disabilities. Getting to know those with any disabilities. Shadowing or teaching them at church. Simply welcoming them at church! Teaching them and not abusing them. Coaching them in special and typical leagues. Working along side them. Taking them to movies. Asking them about their days and LISTENING to their answers. Being a TRUE friend.
I'm pretty excited about this new group I'm seeing forming: Down Syndrome Uprising here is another great article addressing it.
Anyway. I'll probably blog for awareness...but I won't be wearing socks. I tell you about my child, not so you'll feel sorry for her or me. I blog so you won't see her as a scary stranger, so you will talk to her, so you will include her, and take the extra step to be her friend.
Help make a difference.
Be beautiful feet. Not wild socks.
Truthfully, I don't really get the whole wearing of colors to bring "awareness" for anything. A shirt printed with pride, a website marked on it....whatever, that makes sense. A color telling you to be "aware"? Really?
I participate in World Down Syndrome Day and the 31 for 21 blogging initiative for Down Syndrome Awareness, not for you to know about my kid, to be aware she exists...hey, you can look at her and realize she's not like all the other kids...it's so you can understand more about my fears for her, my child's triumphs and struggles, and maybe become more encouraging and supportive...maybe make a difference and a more inclusive future for her later...
Money is cool. Fundraising helps. But you want to know what helps more? Involvement. Support. Acceptance. Talking to my child and those with her disabilities. Getting to know those with any disabilities. Shadowing or teaching them at church. Simply welcoming them at church! Teaching them and not abusing them. Coaching them in special and typical leagues. Working along side them. Taking them to movies. Asking them about their days and LISTENING to their answers. Being a TRUE friend.
I'm pretty excited about this new group I'm seeing forming: Down Syndrome Uprising here is another great article addressing it.
Anyway. I'll probably blog for awareness...but I won't be wearing socks. I tell you about my child, not so you'll feel sorry for her or me. I blog so you won't see her as a scary stranger, so you will talk to her, so you will include her, and take the extra step to be her friend.
Help make a difference.
Be beautiful feet. Not wild socks.
Wednesday, October 24, 2012
31 for 21: Better Than It Looks: Time
Article of Evidence #8, I've got more time.
Well, sort of. I probably have less time in my day than I used to, but...
Tomorrow is Elise's 10th birthday. Ethan told her to enjoy her "last day of being 9 today"...and we both laughed...and I said the usual, "Can you believe she is going into the double digits?" And we got to talking...yes, I am hyer-aware of how old she is. She has packed a lot of living and stress into these last 10 years.
We are much more aware of every single milestone she has had the privilege of hitting. We had to fight for every single one. Not one has been on time for our Elise.
Most kids, you expect for them to hit milestones, and get a little worried if they don't...by days or weeks...we fight tooth-and-nail for them by YEARS.
With typical kids, you find yourself, 3 years later, realizing that you really rushed your kids through growing up and "it went way too fast." I find myself more than a little bit thankful for the awareness of the importance of the milestones... I am not cavalier with Elise's development, or even my subsequent kids...I have become increasingly thankful for each and every one that is hit...
I am really serious. It is an interesting place of awareness to live. And I kinda like it.
Well, sort of. I probably have less time in my day than I used to, but...
Tomorrow is Elise's 10th birthday. Ethan told her to enjoy her "last day of being 9 today"...and we both laughed...and I said the usual, "Can you believe she is going into the double digits?" And we got to talking...yes, I am hyer-aware of how old she is. She has packed a lot of living and stress into these last 10 years.
We are much more aware of every single milestone she has had the privilege of hitting. We had to fight for every single one. Not one has been on time for our Elise.
Most kids, you expect for them to hit milestones, and get a little worried if they don't...by days or weeks...we fight tooth-and-nail for them by YEARS.
With typical kids, you find yourself, 3 years later, realizing that you really rushed your kids through growing up and "it went way too fast." I find myself more than a little bit thankful for the awareness of the importance of the milestones... I am not cavalier with Elise's development, or even my subsequent kids...I have become increasingly thankful for each and every one that is hit...
I am really serious. It is an interesting place of awareness to live. And I kinda like it.
Saturday, October 13, 2012
31 for 21: The Bald and Ugly Truth
I hesitate to write this post. I really do. But I think it needs to be said.
You can't make people care.
I started this blog to open my life up to "Outlanders". The Down Syndrome community is pretty "tight"...it reaches out to envelop you pretty darn quickly. We have support systems that go out like a spiderweb across the entire United States...it also does mind-numbing transcontinental jumps when needed. It even has a language of its own that is slowly permeating the rest of the world little by little.
There are 3 distinct sects of "Outlanders":
There are people that open their arms like second nature, even to things they don't really understand. They have soft, open hearts that suck you in and make you at home and they slowly learn about you and how to be a better friend and it only strengthens the bond. I know that each and every post I publish is taken as another thread bonding them to us...
There are also people that WANT to do that, but they are scared. They don't understand. But they really genuinely desire to be friends. Education and sharing go a long way. They take baby steps and slowly open their comfort box to you, and eventually their hearts blossom like a flower and the final opening becomes a beautiful thing. These are the people I most often write "to"...I share the silliness of Elise, her triumphs, her funny stories, the unique struggles so that they can learn to understand....so they can know we are really not so different after all...
Then there are people who don't understand and don't really want to. It takes them out of their comfort zone or their organized PLAN. And their zone/plan is really all tied up neatly with their own expectations of life, and the messiness of special needs is just more than they want to deal with. It may be that it takes more effort, it isn't Grand enough, or it makes them aware of the spider cracks of imperfection in their own lives...or any number of a host of excuses. I used to think that the preaching of principles would crack their facade, and it doesn't...so I quit...
SO. What am I saying? The same thing that I say in political situations, ironically enough. Love those on your side, share with those who are searching, and don't give yourself an ulcer trying to change someone else's mind...it's their loss. It's between them and God...and it's highly unlikely that you have any control over their heart.
You can't make people care.
I started this blog to open my life up to "Outlanders". The Down Syndrome community is pretty "tight"...it reaches out to envelop you pretty darn quickly. We have support systems that go out like a spiderweb across the entire United States...it also does mind-numbing transcontinental jumps when needed. It even has a language of its own that is slowly permeating the rest of the world little by little.
There are 3 distinct sects of "Outlanders":
There are people that open their arms like second nature, even to things they don't really understand. They have soft, open hearts that suck you in and make you at home and they slowly learn about you and how to be a better friend and it only strengthens the bond. I know that each and every post I publish is taken as another thread bonding them to us...
There are also people that WANT to do that, but they are scared. They don't understand. But they really genuinely desire to be friends. Education and sharing go a long way. They take baby steps and slowly open their comfort box to you, and eventually their hearts blossom like a flower and the final opening becomes a beautiful thing. These are the people I most often write "to"...I share the silliness of Elise, her triumphs, her funny stories, the unique struggles so that they can learn to understand....so they can know we are really not so different after all...
Then there are people who don't understand and don't really want to. It takes them out of their comfort zone or their organized PLAN. And their zone/plan is really all tied up neatly with their own expectations of life, and the messiness of special needs is just more than they want to deal with. It may be that it takes more effort, it isn't Grand enough, or it makes them aware of the spider cracks of imperfection in their own lives...or any number of a host of excuses. I used to think that the preaching of principles would crack their facade, and it doesn't...so I quit...
SO. What am I saying? The same thing that I say in political situations, ironically enough. Love those on your side, share with those who are searching, and don't give yourself an ulcer trying to change someone else's mind...it's their loss. It's between them and God...and it's highly unlikely that you have any control over their heart.
Tuesday, March 20, 2012
Happy World Down Syndrome Day
At the risk of repeating myself, which, I know I am, but this always bears repeating...
"You are everything I never knew I always wanted." ~ Fools Rush In
Today on World Down Syndrome Day, we get to truly celebrate our kids. And you know what? We really do! It is not a blind, stubborn pride thing...It is a a proud, joyful, treasuring...
Do you ever wonder why so very many people who have kids with Downs turn around and adopt another? It's not because we are noble people who are willing to shoulder more burden than the average person, it's because we really, truly love and enjoy our "special" kids.
Don't get me wrong, they can be more work, they can have more health problems, they can make us sad...but they make our lives so very rich and amazing!
I do not think that it was a coincidence that World Down Syndrome Day is the first day of Spring. Having a child with Downs births a new perspective, and new appreciation for life.
So let me just say how very honored we are that God gave us Elise. She is a flash of sunshine in our lives. She is a blessing.
"You are everything I never knew I always wanted." ~ Fools Rush In
Today on World Down Syndrome Day, we get to truly celebrate our kids. And you know what? We really do! It is not a blind, stubborn pride thing...It is a a proud, joyful, treasuring...
Do you ever wonder why so very many people who have kids with Downs turn around and adopt another? It's not because we are noble people who are willing to shoulder more burden than the average person, it's because we really, truly love and enjoy our "special" kids.
Don't get me wrong, they can be more work, they can have more health problems, they can make us sad...but they make our lives so very rich and amazing!
I do not think that it was a coincidence that World Down Syndrome Day is the first day of Spring. Having a child with Downs births a new perspective, and new appreciation for life.
So let me just say how very honored we are that God gave us Elise. She is a flash of sunshine in our lives. She is a blessing.
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