Wednesday, March 31, 2010

Fanning the Flood Waters Away.... Away... And Away Again!

Friends and family are taken aback over the fact that I'm still smiling with 2" of water in my basement. They don't understand why I feel so LUCKY that my basement is submerged and my very expensive carpet is floating. Admittedly, flooding 3 times in 4 weeks sounds incredibly UNlucky to most. But not so much to me. It's all a matter of perspective!

Flood #1 was the result of the cumulative meltdown of multiple 10-15" snowfalls in the month of February. Two consecutive, very warm and welcome sunny days and an inadvertently unplugged sump pump resulted in an uprising of the ground waters and voila, our basement went under for the first time since the 9 days of rain back in 2005, just a few months after The Boys were born. After a week of pushing and pulling a rented and very heavy, commercial-grade carpet cleaner/vacuum, sucking up 50+ gallons of water, the Sarge swapped it out for 2 huge drying fans that ran non-stop for almost a week. Literally 24-hours after he returned the fans to the rental shop, we went under for the second time.

Flood #2 was the result of a massive wind and rainstorm that shook down most of the huge pine trees all over Long Island-- including my mother's and sister's -- and knocked out electric power for hundreds of thousands of my neighbors. Our lights were out for 18 1/2 hours. No electric = no sump pump. No sump pump = 2" of water in our basement. So the Sarge borrowed a pseudo-commercial grade carpet clearner/vac from a colleague, sucked all that water out AGAIN, rented the fans AGAIN and dried the whole place up AGAIN. Though it was raining AGAIN the very next day, Sarge returned the fans while we squeezed in one quick little indoor play date where the Old Soul and her friend were able to jump on the trampoline and kick the balls around our spacious, finished basement playroom. But it continued to rain hard all that day and even harder the next.

By day 3, Flood #3 was upon us. Despite a functional sump pump, the basement carpet was and is currently afloat once more. Darn ground water!

Yes, I'm still smiling! Laughing even. Because the whole thing is just bizarre. I know that I live a Murphy's Law kind of life. One in which resistance is futile and acceptance is the only way to go forward. Things that don't happen to others often seem to happen to me. And that's cool! Consider for a moment that I have identical twins with Down syndrome -- that's nearly a 1 in a million occurrence. And while that's been a great blessing, my basement flooding 3 times in the last 4 weeks is pretty unusual and not so much a blessing... though I've accepted it nearly as willingly.

So what's the trick?

  • Overflowing garden hoses snake out of basement windows and wind down every fifth driveway in my neighborhood so I know I'm not alone in this "misery". It's not a "misery loves company" thing so much as sharing the experience COMPLETELY negates the whole "woe is me" attitude thing (which I'm not prone to anyway).

  • The local news channel is showing folks just 40 minutes from here kayaking through their backyards. And the poor folks in New Jersey are standing in waist-high water in their living rooms... with high tide on the way so there's no sign of receding. I've got just 2" of water in my basement and I know -- because we've already cleared it twice before -- that this is totally manageable.

  • The curbs are lined with my neighbor's personal belongings, damaged and destroyed in the floods. Furniture, carpets, cabinets, tables, boxes, trunks, you name it. But because we flooded back in the Fall of 2005 -- thankfully before our basement was finished -- we played it safe and put 3 of those huge plastic utility shelves down there, put everything on the shelves, and plastic bins on the bottom shelf... Literally no damage except for the 2 pseudo-disposable, hand-me-down couches. We're good!

  • And finally, after much difficulty clearing the original 12" of flood water in 2005, Sarge and I had the wherewithal to finish the basement with 100% INorganic materials. The Owens-Corning basement finishing system (walls) installed by Alure Home Improvements (as seen on Extreme Makeover Home Edition... still waiting for that call) and Home Depot's next generation green, porous carpeting and rubber padding has proved -- 3 times over -- to be a GREAT investment! YES, it cost a little more (actually it cost a lot more) but it has now saved us thousands of dollars over the cost of refinishing and recarpeting our basement three times using traditional wood, sheet rock and carpeting... all made with organic materials that feed mold and mildew. MY walls are guaranteed not to mold or mildew FOR LIFE and the porous and INorganic carpeting and padding allows us to vacuum straight through without having to remove and dispose of them. NO smell. No stains. No stress. TOTALLY worth it.
I'm actually kind of sitting here doing Eddie Murphy's SNL "I got my ice-cream" dance despite the 2" of water STILL soaking into my basement carpet downstairs. And even if the proverbial scoop of ice-cream falls from the cone and plops on my basement floor with a big splash AGAIN, I figure I'm still ahead of the game. I know it's nothing a vacuum and a few fans can't fix. Oddly, the whole experience is making me feel sort of SMART! LOL! How's that for perspective?
And from the Old Soul's POV: As I explain to her and The Boys that they can't go downstairs to play because we're flooded AGAIN, noting, oddly, that we've flooded within 24 hours of Daddy returning those fans 3 times, the Old Soul says:
"Mom, maybe we should just keep the fans this time!"

Sunday, March 28, 2010

Happy 101 Award

Here are the rules:

1. Copy and paste the award on your blog.

2. Name the person who gave the award to you and link to their blog (or hyperlink).

3. List 10 things that make you happy.

4. Pass the award on to other bloggers and visit their blogs to let them know.

Step 1: My sincerest thanks go to Stephanie who writes Our Daily Smiles and recently awarded me the "Happy 101" Award. There's just something about getting an award... isn't there? Seriously! For me, a little appreciation goes a really long way these days. Especially when it feels like most of the time in my real life nobody even notices any of my efforts. And, I know I'm not alone. Stephanie was just as jazzed to receive the award as I am. Perhaps it's because we all work so hard doing all we do to raise our children with special needs -- rarely getting any recognition for what we accomplish on a day-to-day basis -- and then we endeavor to share our experiences by writing about them hoping to help and inspire others... As such, a little positive reinforcement from the blogging community via a comment, or better, an award is like getting one of those sticky little gold stars in life... awarded by those who know just exactly how much it takes to do what we do. For me, that makes it even more significant! And each and every one of us out here in blogland sharing our experiences deserves that gold star, giving back in such a positive way to help others who walk in our shoes.

Step 2: My Happy 101 list (not necessarily in order of importance):

[10] I love to write. It helps me work through and organize my thoughts... and my life. But, I especially like writing my blog. Mostly because it makes me feel like I'm contributing to making the world a better place for my beautiful little boys who happened to have been born with an extra 21st chromosome. My job in life is to create a peaceful path for my children.... writing Walk On The Happy Side is a step toward educating the world about my incredible children and Down syndrome while breaking down barriers for them.

[9] Getting comments on my blog makes me happy too. I'm not fishing for comments here. I'm just acknowledging that when I open my email box and see a comment from a reader, that's the first one I click. Hearing that something I've written resonates for someone else -- provides them with hope or information or a bit of happiness -- brings me pleasure. It's the whole tree falling in the forest thing... If I blog and nobody reads it... does it make a difference in the world?

[8] Helping others -- whether it's offering comfort, acknowledging a challenge they're facing, sharing a problem, listening, lending a shoulder to cry on, a helping hand or just plain old making them smile if I can -- makes me feel good.

[7] Doing the right thing... Knowing that I've acted according to my principles (a good sound mix of Christian/Buddhist/Green principles... LOL) makes me feel as though I've earned my keep in the world.

[6] Feeding the birds and squirrels, especially our little friend, Bunny the squirrel, who apparently lost his tail somewhere along the way and has just a little bunny-like stump now. He's the cutest little guy and visits every day for the bread and fruit we throw to him.

[5] The perfect feeling of weightlessness when I'm SCUBA diving with only the calm, zen-like sound of my breathing, floating my bubbles and the fluid movements of the fish cruising around me. Oooooh I LOVE that! Very peaceful!

[4] The sheen of purple that covers the lawns all over my neighborhood when the first crocuses break through... a great reminder that Spring and sun-shiney weather is on the way.

[3] I LOVE the feeling of the warm sun shining on my face and in my eyes. Truly!

[2] The way my dogs greet me at the door when I come home -- their tails wagging in hyper-time -- reminds me how much they love and depend on me... I love the feeling of being loved and needed.... My boxer's tiny little stump makes her whole butt wag and my black chow chow's long-haired tail curls up over her back and wags a mile a minute but ONLY for a very select few.... lucky me!

And the number ONE thing that makes me happy (drum roll please)

[1] Hearing the beautiful sound of my children's laughter! No sweeter sound in the world. I thrive on it, seek it out, anticipate it when I'm away from them. It is my life blood. Thank GOD for my children and their laughter.

My Happy 101 Awardees are:

Note: There are so many blogs I'd like to name but 3 is the magic number. To those I've selected, I apologize if you've already received this award and understand if you prefer not to post and pass it on a 2nd time. Please know that I had no intention of annoying you or putting another item on your to-do list; only to recognize you for the wonderful service you give the world through your blogging and to let others know you're out there doing it.

[1] Michele at Big Blueberry Eyes: Michele does a fantastic job conveying her deep appreciation for the happy life she's been gifted that includes the beautiful Kayla who is blessed with an extra 21st chromosome; her baby brother, Lucas; and her husband who gives so much to us all via his military service and who is currently on deployment. God bless Michele and her wonderful family and blog. Thanks for always being such an inspiration to me.

[2] Lisa at Finnian's Journey: For always doing it her way and for sharing her thoughts along the way. She's blazing her own trail and writing all about it. At one time or another we all feel railroaded into going one way or another and wish we could break free. Lisa actually manages to rise above that pressure and do what she thinks is right for her beautiful Finnian who is also blessed with an extra 21st chromosome and her family. She's a constant reminder -- despite the pressure to conform -- that I still and always will have a choice... There really is more than one way to raise a child... with or without Down syndrome.

[3] Ria at BillandRia: Ria's need to gather and share information makes her blog extraordinarily informative about all things pertaining to raising a child with Down syndrome. Bill and Ria's acceptance and drive to do the right thing for Matthew shines through in every post. Just a great and informative visit every time.

So thanks once again to Stephanie at Our Daily Smiles for giving me this award and to Michele, Lisa, and Ria for writing such wonderful blogs. Go check em out folks. Totally worth your time and effort.

Friday, March 26, 2010

From 5 lbs to 50 in Just 5 Years

The Boys were born 8 weeks premature, healthy and breathing on their own. Weighing in at a respectable 4lbs - 15oz and 4lbs - 11 oz, they measured 17 3/4" tall and just barely made the tail end of the "typical" growth charts despite being diagnosed with Down syndrome.

My "Big Guy" in the NICU at 3 days old. That's my hand on his chest and my thumb on his thigh to give you an idea of just how small he was.... THEN!

My "Little Guy" in the NICU at 3 days old -- the day before his C-Dificil and NEC infections kicked in... a fight he fought valiantly and WON! That's his lower leg and big toe at the right side of the picture.

Here they are FINALLY together again at -4 days old (that's 8 weeks post birth but still 4 days before their actual due date) at home after 2- and 6-week stays in the NICU. Can you imagine... this picture was taken the day their Early Intervention therapies started! As you can see, both of them fit easily in the hanging bassinet of our little Graco Pack-n-Play.


That's us a few weeks ago at their school Winter Festival. Notice my hand doesn't even cover SpongeBob's Square Pants never mind covering my "Big Guy's" entire torso from neck to thigh the way it did when he was born! Just shy of 5 years old, they're 43" tall and weigh in at 50+ lbs each (with a lb or 2 difference between them at any given time). Yeah, they're fully on the "typical" growth chart now!

A day late and a pound over. For more Special Exposure Wednesdays see 5 Minutes For Special Needs!

Saturday, March 20, 2010

Tending to My Garden When Happiness Eludes Me

For me, the absence of happiness -- which is not the same thing as un-happiness -- has been linked to what comes down to overwhelming circumstances. Generally, I fare well if my family, friends and loved ones are faring well and if the planets are aligned such that things are mostly not working against me (which, is not the same as things always going my way... which rarely happens and I'm ok with that). Don't get me wrong, I can and do find happiness every day even when nothing goes my way. But when the universe introduces circumstances that challenge these very simple happiness tenets, my underlying feeling of happiness is reduced. I fall prey to the proverbial straw that breaks the camel's back. I can SEE the golden ring -- happiness -- but as my world spins round and round I come to believe I just can't reach it... right now!

This pretty much explains why the feeling of happiness has been so elusive for me lately. Circumstances are not working in my favor right now and at least a couple of my loved ones are having health issues that concern me on a daily basis. Yes, I still laugh every day. Yes, I enjoy the heck out of every moment I get to spend with my children. And, in short bursts, I even find the time to bask in the 70 degree sunshine... waiting with The Boys at the school yard for the Old Soul to join us when the 3:00 bell rings or clearing my perennial garden in preparation for the inevitable blooms to come... while we wait for the therapist to arrive.

That garden is a great metaphor for my life right now! The blooms will break through all the detritus that's built up over the winter. But, it certainly helps me and the garden to actively clear some of the cr*p away... Proactivity is one way I know to mend the poor camel's back in my heart and to help make way for the flowers. It makes me feel like I'm doing something instead of just sitting back and waiting. Yes, the flowers will bloom either way. But I like to feel like I acted to facilitate the process and positively impacted the outcome. A more beautiful garden, unfettered by weeds and garbage.

And so it is with all the circumstances that are driving down my feelings of happiness right now. Sure the flood waters in the basement will eventually dissipate... but I feel more empowered when I grab that vacuum and suck up some of the water to the extent that I am able... even when The Sarge says it is "still coming in". Yes, I will get to the other side of my children's Transition-to-Kindergarten Meetings (from CPSE to CSE) and, one way or another, I and the committee will come to an agreement on how best to meet their educational needs. But researching, preparing and supporting my opinion makes me feel more confident, enabled and influential with regards to the outcome. We'll figure out why my little guy gets those broken blood vessel spots on his chest one test at a time -- each result easing my fears and my mind. And my dear old Dad will live on with his Alzheimer's Dementia until he doesn't. We can and will change his meds and/or move him to another facility as we feel necessary to ease his suffering... but the outcome will be what it is. The same holds true for my aunt who may or may not follow in Dad's footsteps. This is life. And the only way I know to do this is to proactively go through the motions. I do the footwork and leave the rest to God, to fate, to life, to be whatever it will be.

Yes, this is MY garden. I planted it. And I will nurture it. I will take steps to help it grow. And I will take the time -- however fleeting it seems -- to enjoy not just the flowers, but the process!

When circumstances conspire against me grabbing that golden ring -- when the flowers in my garden are dormant -- I know I can still make a difference by addressing the process. I can switch horses. I can close my eyes and enjoy the breeze for a moment (yes, choosing inaction is action). I can lean in harder, reach farther, dig deeper and plant the seeds. The goal is not getting the golden ring but tending to my garden. It is that action that drives my happiness.

Thursday, March 18, 2010

Advocacy Approaches -- The Bull in the CSE Shop or Advocating with Grace?

I may have mentioned that I'm attending a Lay Advocacy Training program sponsored by the Long Island Advocacy Center AND hosted by the Long Island Parent Center. The course offers parents and educators the opportunity to learn more about the federal, state and local laws that govern special education and how to find the necessary information in order to be a better advocate for our own children as well as preparing us to help others advocate for theirs. I also spent 2 days this week conferring with other parents of children with Down syndrome at the Down Syndrome Advocacy Foundation's (DSAF) Best Practices in Educating Children With Down Syndrome Conference, a wonderful gathering of parents, educators and local experts in the field, held at CW Post. At each event, I sidled up to a number of other moms; connecting and discussing every imaginable topic pertaining to advocating for the education of and services for our children. Giving, taking and sharing every bit of available information openly with everyone.

Amongst the literally hundreds of parents I brushed elbows with, all of us drawing information to help us become better advocates for our own and others' children with special needs, I noticed an interesting dichotomy: There are, in my opinion, 2 very different approaches when it comes to advocacy.

The Aggressive Advocate: We've all encountered this person, the one who is outright angry at the state of affairs in special education and, whether advocating for their own children or helping another parent advocate for theirs, this person jumps into the CPSE/CSE ring swinging, premeditates the fight and often uses the big guns right up front... generally making for a relatively volatile confrontation. Now, admittedly we're ALL angry to some degree about having to fight to get even the most basic services for our children with special needs. But, I'm saying that the overriding emotion demonstrated by this type of advocate is aggression toward the system that comes out as aggression towards every body... And I mean EVERY BODY! As a searching-for-the-answers parent, you can see and hear them coming with their barrage of "you have to...", "You must...." and "If you DON'T, they'll walk all over you...." This advocate would have you believe that the ONLY way to win is to fight like hell and do it their way!

The Assertive Advocate: This person sees the advocacy mission as an opportunity to proactively influence the decisions of the CPSE/CSE committee. Their tactics generally include light to moderate subliminal psychological manipulation (funny but TRUE) and the bait and switch (ask for more, settle for what you really want). Though they may be just as angry as the first advocate I described, the overriding impression is that this person is informed, prepared and capable of taking on the CPSE/CSE committee peacefully.... and winning (not just fighting).

Me & My Reaction:
As a parent, the Aggressive Advocate makes me feel like an uneducated boor. When one of these advocates talks at me, I feel as if everything I've ever done with regards to the education of my children with special needs was an outright and utter mistake. This person makes me feel stupid, inept and afraid that I'm ill-prepared to parent a child with special needs... never mind I could actually go up against my fellow CPSE/CSE committee members. The Assertive Advocate, on the other hand, fills my head with information, gives me resources to learn more and identifies multiple winning scenarios. This person leaves me knowing I can't lose... no matter what the outcome, there is always recourse.

Personally, I avoid the aggressive advocate. I know they may have some good information in between all of their take-control-of-me issues. But, the truth is, this life and playing the role of advocate for my children is challenging enough without having someone yell at me for not doing it their way. I've said this before and I will say it over and over again, there is more than one way to successfully raise a child with [or without] Down syndrome!

So, who do I want to be when I grow up? I hope that I can live up to the standards of the best Assertive Advocates that I've met and have had the pleasure to be taught by. To all you assertive advocates -- Kathleen, Michele, Helen, Helene, Jennica, Valerie and many others -- Thank you.... for sharing your knowledge, your demeanor and your tactics. And to all you aggressive advocates -- you probably don't even know who you are -- if you see yourself even vaguely in the description above, tone it down, take a gentler more manipulative approach and remember, you catch more flies with honey.

Administration: Sorry I've been a bit incommunicado these days because, besides life being totally crazy, I'm also trying to figure out how to migrate my blog to wordpress for greater design and functional flexibility. That means, when I should be posting, I'm searching -- unsuccessfully, so far -- for answers. Needless to say, I'm still here on blogspot writing this new post which means I have NOT resolved the migration issues just yet and you, the reader, have nothing to worry about (as if these issues keep you up at night the way it does me... LOL). When and if I figure it all out, I'll let you all know how the migration might affect you, the reader. And, by the way, I am massively honored that you are reading so thanks!

I know... blah blah blah!

Monday, March 8, 2010

"We Are More Alike Than Different!"

Like every blogger, I love comments. I read each one like I've just heard from a dear old friend and I ponder the thoughts each commenter expresses. Yesterday my dear old friend "Anonymous" left a thought provoking comment on my "End the 'R' Word" post ;o]. Paraphrasing, she said although she does not share the specific trials and tribulations that I face in my life, she found the sentiment behind my "End the 'R' Word" post applicable to so many situations... to so many other groups society has chosen to alienate.

Her comment really made me stop and think... And it made me realize that though the "End the R Word" has become a national campaign to specifically address the misuse of the "R" word directed towards people with intellectual challenges... For me, the campaign and all of my advocacy is about the usage of any derogatory language or discriminatory behavior and sentiment directed at any group of people singled out as different or less than anyone else.... STARTING with my beautiful and capable boys who happened to have been born with an extra 21st chromosome. I want everyone to see them and see each and every person they encounter as an individual with a life to live, emotions, loved ones, likes, dislikes, friends, family, strengths, weaknesses, fears, dreams and feelings!

It's time that we all started to show respect toward all other human beings regardless of the number of chromosomes; regardless of the intellectual challenges they may face; regardless of their sexual orientation; the color of their skin, hair, clothes; regardless of the country their ancestors came from, or who they chose to marry, or NOT marry; regardless of what kind of car they drive; how much money they make or any one of a million other superficial factors are part of but do not necessarily define who they are. The truth is we are all more alike than we are different. The human race is a melting pot. And I do not choose to dwell on the differences between me and anyone else. Nor do I think that I or my children are better than anyone else -- or less than anyone else -- as a result of our differences.

The National Down Syndrome Congress has started a campaign that I absolutely love on all levels. Though again, it was developed as a movement to facilitate the acceptance of people with Down syndrome by everyone in our society -- and I LOVE it for that -- it also applies to any homogeneous "group" of people that is ostracised by the masses. Check it out:

We Are More Alike Than Different!
Please click on the link above and take the time to watch the video and then follow the prompts through the campaign screens. It is a beautiful illustration of what respect and acceptance of the "individual" really means!

Sunday, March 7, 2010

Embrace the "Typical" As Well As the Exceptional!

When it comes to playing in the snow....

The only special needs they have are warm gloves and a good pair of snow boots!

Don't ever lose sight of the extraordinary typical-ness of your babies!

Wednesday, March 3, 2010

End The "R" Word

Today and every day going forward is the day to "End the 'R' Word". It's time for us all to acknowledge that this word, like so many other words that have become derogatory terms in our society, has outlived it's original usefulness and intent. It doesn't mean what it used to and it's time to act responsibly and with respect to those with intellectual disability, their loved ones and all of society and banish this word from our vocabularies.

If you KNEW you were putting my amazing boys down by using the "R" word, would you still say it? Would you say it in front of them?

Or in front of me?

Do you realize how much it hurts me and every other mother who has a child with an intellectual disability to hear this word?

And do you realize that the put down you mean when you say it to someone who isn't intellectually challenged is meant to compare that person negatively to my beautiful children?


End The R Word!