Sunday, July 26, 2009

A "Blog Hop Til You Drop" Welcome

While I would love to be in Chicago meeting my favorite Moms of blogging fame, unfortunately, being the stay-at-home mom [blogger] that I am -- young kids... a couple with special needs and all -- my place is at home. With them. At least for now and in the foreseeable future. Still, a girl can dream... and I can blog hop til I drop at

So, welcome all you stay-at-home [from Chicago] Mom bloggers. I am Maggie - Mom to three beautiful children -- two of whom have been blessed with identical chromosomes including a little something extra in the 21st position. If you want to read more about me, check out my side bar (About Me and My Motivation). Hope you enjoy the cyber trip to my life on Long Island, NY. Peruse. Comment. Email me with questions. Leave a link to your site so I can return the favor.

And, maybe next year or the year after that, after we've gotten to know each other a little better through our blogging, we can meet face-to-face at some Mom Blogging (or Down syndrome) conference (instead of just post-to-post). Or maybe even create our own little local niche conferences. (Dreaming again.) Until then, thanks for visiting. See you soon in the blogosphere!

xo maggie mae

Saturday, July 25, 2009

Down Syndrome Awareness & Happiness -- The Cross-Road: Asking for Help

I was catching up on my blog reading on one of my favorite blogs,, when I thought I’d add my thoughts to Gretchen Rubin’s latest entry on “Asking for Help”. Unfortunately, the site wouldn’t accept my response. I think the problem was that maybe my comment was too long… (No… Ya Think?) So, I decided to go ahead and post my expanded comment and thoughts -- a pure happiness project post -- over here. Why not? After all, this IS my happiness project. But, since my life and happiness are forever intermingled with Down syndrome-related topics given I am mother to 4-year-old identical twin boys who happen to have been blessed – YES BLESSED – with an extra 21st chromosome, in a superficial but real attempt to bridge the two topics, know that despite an upbeat attitude, my life is sometimes hard. Sometimes very hard… Every decision is complicated by the circumstances of our lives (isn't every one's?). Mind you, I wouldn’t trade my situation for any one elses. Life is good. I’m just saying… Often times, I find myself in the unfortunate position of needing, wanting and feeling awkward about asking for help. So, let me share my experience and wisdom (LOL) on the topic... for those who care to read about it:

It is an amazing happiness boost to ask for help when it's truly needed and to receive the help you need and want. But, part of that tenet should be to ask for help from someone who has the means and desire to actually provide you with the type of help you need and want. Sadly, asking for help of the wrong person when you really need it can be devastating and getting a refusal or the wrong kind of help can make your happiness quotient crash big time.

For some, family members are just the right people to ask for/and provide help. Delivering it with love and care and no strings attached. For others, asking family members for help is a recipe for disaster -- with all the history and baggage that comes along with family relationships, the request and delivery can be fraught with frustration and disappointment. Sometimes asking an acquaintance or even an unknown person [in the position to help] is a better option and may even result in a new or stronger relationship.

Finally, asking for help too often can also result in a negative response. And, doing things for yourself can have a huge happiness boost -- growing your self-confidence and skills. So, be sure you’re asking when you really need it and doing for yourself when you can and should. That sounds easier than it is – maybe touching on the personality types... givers and takers -- but it’s worth some thought before you ask.

I've seen many of these dynamics at work in my own life with various [types of] people in my family and with my friends -- from both sides of the help equation… helping others and being helped. So, if you're asking for help, make sure you really need it, be as specific or generic as is necessary and make sure you're asking someone in a position to help you. Also, make sure you're prepared to forgive them (for your own good) if they refuse. A refusal isn’t always a personal affront. Sometimes, it’s not about you… It might be bad timing, personal issues or selfishness on their part. Then again, it might be about you. Maybe you ask for too much, too specific, or too often. Or maybe it’s something as simple as you remind them of someone they don’t like and they just won’t do it… Whatever! On examination, you may come to understand a refusal… you may not. Either way, when you ask for help, you need to be prepared to weather your own emotions if/when you get a, “No” response. Or even a “Sure”… but the help never actually comes -- a totally different type of refusal -- or comes in a form that's not really all that helpful.

Done with an open mind and heart, helping others and being helped is a wonderful happiness boost. It’s the give and take, the yin and yang of human relationships. But, it works best for all involved if the helper has the means and desire to help and the helpee really needs the help and accepts whatever response is offered, graciously.

I try to help whenever I’m asked… if it’s possible… reasonable. That is, if it doesn’t interfere with me caring for my immediate family or for myself. (I don’t mean this last part selfishly. I’m a person who too often puts my own basic needs last… and that’s not good for me or my family). I also try to do things myself first and then ask for help only when I’ve come to the conclusion that I cannot do it myself. And, I accept help when someone [or almost anyone] is offering it (even if I didn’t ask for it). That’s a gift I can give to them – letting them help me – as well as receive by getting assistance with whatever task I have at hand… even if I could have done it myself. In those cases, everyone wins!

For all those of you who have helped me in your own way... my deepest and sincerest gratitude! I would not be here were it not for all the help I've received over the years.

Thursday, July 23, 2009

THANKFUL THURSDAY - This Too Shall Pass!

Thank God for Thankful Thursdays, I might've forgotten to stop and think about what I've got to be thankful for were it not for this post-commitment.

[1] I'm thankful that despite what terrible physical shape I'm in -- that includes overweight, stress, poor nutrition, lack of exercise and extreme fatigue -- miraculously, my immune system keeps working. Yes, I got sick. But, with pseudo-rest (read: I've got to do what I've got to do and everything else -- like cleaning, cooking and laundry -- falls by the wayside) it only took me down for 2 1/2 days (so far). I'm 50% recovered at this writing and moving in the right direction. God willing, I continue to recover and should be back to my version of "normal" just in time for the weekend.

[2] Thankful for the rain. Means the kids expect to do less and I get more couch-time (to aid in my recovery).

[3] I'm ever so thankful for my wonderful children. Even when I'm sick they mostly never cease to amuse and amaze me (if not occasionally irritate me b/c I'm sick and I haven't had a break).

[4] I'm grateful these beautiful children of mine don't hold my sour mood or the resulting yelling against me. Sure, I've got the excuse of being sick... and tired... and having no help (b/c hubby was working working working through it all). Still, explain that to a child! I did and I pray they understood just a little bit. But even if they didn't, thankfully, they haven't shunned me for my bad behavior at all. It would appear all is forgiven. (Can you hear "Amazing Grace" playing in the background... that's for the wretch I am and the three angels God sent to save me!!!)

[5] Thank God for my faith. I don't know where I'd be without it. I see so many people floundering these days. Yeah, life is tough and getting tougher (in many ways). But, my faith still buoys me up. Thankful my faith keeps me consistently bobbing above the water line!

Gotta go. Hungry kids and all that. Operating at 50% means I'm back to cooking (versus buying) food for them again. And, where's Daddy you ask? Poor guy's working again. Doing his part to ensure we stay above that water line. And I am ever so thankful he's got a good job!

The moral of this week's Thankful Thursday Post: Have faith! This too shall pass!

Wednesday, July 22, 2009

Special Exposure Wednesday - Then & Now

The pic I wanted to load wouldn't so here's the sub...

Then (6 months old)

Now (4 years old)

Tuesday, July 21, 2009

Doing The Right Thing... Doesn't Always Mean Things Come Out My Old Soul's Version of "Right"

Doing the right thing makes me feel good about being a human being sharing this planet with others. It makes me feel good about me. I try to do the right thing even when it's not the convenient or easy thing. And, I certainly teach doing the right thing to my children. Frequently, my children teach me about doing the right thing.

We recently had just that experience with the added twist of another important life lesson. Unfortunately, doing the right thing doesn't always end up the way you want it to. My 4-year-old identical twin sons have Down syndrome and attend an integrated preschool some distance from our home. During my 3-hour daily commute to and from the boys' school, we cover a lot of parkway ground. For the summer, I'm now joined by my precious old soul who chose Mommy time over summer recreation... "More fun" she said. On our twice daily return trips, Olivia noticed a fallen Christmas tree on the side of one of Long Island's busiest highways -- the Cross Island Parkway. There, roots prone, Olivia sobbed each day that we had to save it. "Bring a shovel Mom and we can dig it back into the ground." Me being the Mom that I am, I packed the shovel the next morning with a wink and a promise that "we'll TRY"!

And, try we did. Planned out in my head right down to how I'll explain to the police if they question our motives, I pulled over just past the southbound Hillside Avenue exit, grabbed my shovel and the old soul's hand and trekked 100 yards up to the fallen tree. What appeared to be MAYBE a 6' tree doing a 60 mph drive-by was actually a 10-12' tree up close and personal. The tree's major feeding roots were still intact though pulled and strained so it was still alive and kicking. We dug in, Liv's foot on one side of the shovel and mine on the other in what she called a "double dig". We dug deep despite large rocks meant, I think, for water run off during the tree's original planting. And we dug under the trunk to try and cantilever the tree into the hole. Twice we stopped to push it up into position but could only get it to a 45 degree angle, precariously balanced on MY FOREHEAD before we had to lower it down again... unsuccessful. I needed a strong second pair of hands.

Two hours into our dig, I was dismayed at the fact that not a single person, police officer or highway worker, stopped to assist... or at least inquire what a woman and child were doing with shovels, digging up trees on the side of a public highway. Olivia assured me that several police vehicles passed on the northbound side of the highway. We even waved at a 4-truck highway [grounds] maintenance crew caravan who slowed to see what was going on. The last truck had its passenger window open so I yelled, "We're trying to right this tree!!!!" The unshaven, glorified lawn guy gave me the thumbs up and kept driving. NOTHING!

I was hoping for a police man to stop so I could talk him into lending a hand... "Here, just hold the tree up at this 45 degree angle while I get down low and push it the rest of the way into the hole!" Suddenly I realized we could get in trouble if the scene was misinterpreted. What if they thought I hit the tree and drove away, returning to the scene of the accident to undo the damage! No, my car was unscathed... I could talk my way out of that. And no, we weren't stealing the Christmas tree... totally out of season. Besides, Olivia could talk us out of that explaining the real reason we were there. Believable? I'm not sure. But, worse case scenario, they call the "Sarg" to confirm the old soul's story and he'll say, "Yup, sounds like something my wife and daughter would do. Sorry for your trouble officer! Could you put my wife on the phone please!" (I think scenes like this is why he married me. I keep life interesting... And, keep him guessing about what's next!) Then Olivia says, "Mom I think I see police lights flashing through the trees just a little way down the highway." We take a little walk just far enough from our tree to clear the trees and, sure enough, there's an NYPD police cruiser behind a motorcyclist -- Police officer with ticket-book in hand. We wait for the real police business to be done standing like that photo of the old farmer and his wife holding a pitch fork -- only it's the modern day version with Mother and daughter holding a shovel, standing on the side of a busy highway. The motorcycle slowly maneuvers back into traffic and the police car cruises right up the exit ramp within 25 feet of Olivia and I.... NOTHING! I mean, he looked right at me and then quickly looked away. Clearly, he didn't want to be bothered. I guess helping two damsels and a tree in distress doesn't count towards the non-quota of monthly revenue-generating tickets he needs to write. (Ooh, the skeptic in me rises to the surface.)

Feeling quite alone again on one of the most crowded roads in NYC, I explain to Olivia that we just can't do it ourselves. "But Mom..." she whines and I quiet her...

"Doing the right thing doesn't always turn out the way you want it to. Sometimes you try and you don't succeed. That doesn't mean we didn't do the right thing by trying. And, it doesn't mean you shouldn't try again or try the next time an opportunity to do the right thing is presented to you."

We pack up the shovel, knock the dirt off the bottoms of our sandals and climb back into the car. All the while, I'm listening to my old soul list all the people we could maybe call to come out here and help us... Lisa? Nope, she has a baby. Daddy? He's working. Nicole? Another kid. Grandpa? Too old. The list goes on. None of these folks, mind you, would be willing to do so with the exception of a friend who lives 6 hours away. "Call him!" she says, "We can wait until he gets here and try again!" Meanwhile, in my head, I'm thinking of ways to right the tree too. I can get a pole and prop the tree up at that 45 degree angle so I can get down and give it the final push myself. Or, maybe I can tie one end of the cargo strap in my car around the front bumper's towing hook thingy and the other around the tree then back up slowly... pulling the tree into the hole we dug. Hmmm??? Wait. We're getting a little crazy here. That last idea could be dangerous. This might be getting out of hand... Getting?

When Daddy got home, Olivia relayed to him our failed attempt at righting the poor, felled tree and asked if he would help us... (His name came up earlier but he's not the "pull over on the parkway and help a tree" kind of guy. I'm not even certain he'd pull over if he was one of the passersby and saw his wife and daughter struggling mightily with the 12' behemoth! LOL) But, Daddy tells us, perhaps we can call 311 which is the parks and highway maintenance "hotline" and report the tree down. Maybe... MAYBE... they'd be willing to go out there and remove it. "WHAT? I don't want it REMOVED. I want it REPLANTED! Mommy, get a big pole or a stick (did I say that out loud or is she just a chip off the old block?) and put it in the car. Ask Grandma to help us. She'll do it. She loves trees." "She's right!" Daddy laughs, "Your mother would help you!" Olivia goes on, "We'll do it ourselves. We'll try again!"

So, for now, there it lays! On the side of the highway. Still being fed by it's major roots. Surrounded by the BIG hole we dug. Waiting for an extra pair of strong hands to tip it back into existence.
Today, when Olivia saw it still laying there, she cried, "Mommy, I can't take this much longer!" Maybe tomorrow I'll put that metal pole in the car along with the shovel and see what we can do. Another good lesson... If at first you don't succeed, Try, try again!
P.S. Grandma said she would help when Olivia told her about our escapade.

Sunday, July 19, 2009

Down Syndrome Awareness -- A "NORMAL" Weekend

I know I still owe you all Part IV of my "Back to School" Grass Roots Advocacy Efforts but I need a chunk of uninterrupted time to sit and write out what our "talks" are about and all the various topics we may or may not cover during our themed, question-led discussion. See, I've been away -- away from home on a mini vacation and away from my computer -- so I haven't had that chunk of time to commit it all to paper... or screen. But, here's another, different thought... Here's a little story about my life with 3 kids... two of whom happen to be genetically identical to each other including a little something extra on the 21st chromosome (aka Down syndrome).

Can you hearken back to a time when things felt "NORMAL"?

Before I had my "special" children, I never minded the word "normal". Normal meant no fever. Normal meant things were as I expected them to be. Normal meant, as it does in the dictionary, "the usual condition". The "Status Quo"!

Well then, I'm happy to say I had a very "NORMAL" weekend with my special kids. That is, my SPECIAL kids -- without quotes. I mean special because they're unique and awesome and MINE and I love them to bits just the way they are. Yes, some refer to my kids as "special" -- with quotes -- for other reasons. Namely, my 4-year-old identical twin boys -- who are so very different from one another despite looking so very much LIKE one another -- both have Down syndrome. Chances of that happening approach the 1 in a 1,000,000 mark so I guess that makes them pretty "special" (with quotes). But, for the record, my old soul's just as special in her own way. So, me and my special kids had an absolutely wonderful, if not sometimes worrisome, "normal" weekend pseudo-camping. That sounds like an oxy-moron but, truly, it is not!

My cousin has 2 acres of wooded land behind her house in Connecticut and a nice trailer which she hid in the back acre for us, under some trees... fully equipped for me and my family. We visit Connecticut about twice a year. Once to attend the Deep River Muster, the oldest colonial parade in the country, and to swim at Cedar Lake. And, the 2nd time to camp at Hammonasset State Park in Madison, on the north shore of the Long Island Sound. This past weekend was the Deep River Muster which I've been attending nearly every year since I was a child (40+ years) and have instituted as a tradition with my own children. Unfortunately, Hubby had to stay home to work which conveniently relieved me of the trouble of making pet care arrangements. Besides missing Daddy, it's not a total loss as he doesn't actually like the parade all that much. So, I made the trek, not by myself, but with my 3 beautiful and special kids.

On our first night there, we shared pizza with our cousins. Then 6 of us -- my family of 4 plus the oldest two of my cousin's 4 young daughters who joined us in the camper -- weathered a mighty thunder and lightening storm in the trailer beneath the branches of a mighty oak tree. There were 5 very brave kids and a tired Mom in that trailer... But, there was no evidence of Down syndrome.

On day two we went for a walk down town with my Aunt Dolly and a slightly different set of kids -- my 3 and my cousin's two middle girls this time. That's two double-strollers riding down some seriously big hills to a quaint little village filled with artsy shops and a general store where we popped in for snacks and cool beverages for all. Along with the 3 girls, my boys followed me into the store and -- after I dissuaded Michael from a fancy-looking can of JOLT soda (that could have been interesting, huh?) -- chose for themselves, just like every one else, a bottle of apple juice each... Their beverage of choice. All the children drank their juice outside the store while gently petting a 4-month-old Springer Spaniel named Oliver before my Aunt and I pushed -- huffed and puffed -- back up those seriously steep hills to my cousin's house-on-the-hill and our waiting trailer-in-the-woods. And, let me tell you, that was some serious huffing and puffing because I was pushing 80 solid lbs. of boys in my stroller... That's 40 lbs each which, at 4, puts them in the 50th percentile for weight (and height) on the "normal" charts! So, again, not even a glimmer of Down syndrome entered into the picture.

A little while later, we made our annual trip to Cedar Lake. YES, I worried about being able to watch both of the boys in the water despite the presence of two very capable-looking lifeguards. I worried NOT because they have Down syndrome but because they're 4-year-olds who don't swim all that well... And because there's TWO of them and only ONE of me! But, they listened well and played in belly-button-deep water staying safely near Mommy's legs. Yes, they drank some lake water... just like I did when I played in this very lake as a 4-year-old... Just like "normal" kids. And, they screamed and splashed and watched the fishies swimming around their toes... Just like their mama did 42 years ago and for many years since. On the way out, we stopped at the snack shack and ate our ice-cream on the steps -- Like I used to do when I was a kid! What a picturesque summer, family vacation scene... devoid of even a hint of "special" needs.

Saturday morning, we packed the extended clan into 2 mini vans... off to see the oldest colonial parade in the United States. Fife and Drum Corps from all over the US come to participate in this 3-hour-long parade. Though the occasional musket- and cannon-fire were a bit loud for all of the kids, every one marched to the drum beat and applauded the passing paraders. Back at the house-on-the-hill, we had a big family-and-friends barbecue in the post-Muster tradition. I'd say it was all rest and relaxation but the truth is, my cousin's house is bordered on one side by a 30'-50' drop-off to a pond and waterfall, in front by a 2-story-high stone wall drop-off to the garage below (no fences or guard rails) and on every other side is woods... Woods riddled with poison ivy and ticks (2 towns from Old Lyme, Connecticut where Lyme disease was first discovered and named). I know I sound totally paranoid but it's a potentially dangerous spot for any kid. So NO, it was not very relaxing. I was counting kids from one end of the property to the other, My one-two-three and then my cousin's one-two-three-four... OK, all accounted for. With 10 seconds of peace before I'd start counting again. I cannot imagine how my mother (5 kids) and Aunt (10 kids) did it. I was in a constant state of worry that one of my children (or hers) would wander off either drop off or into the woods. Not relaxing... but totally and 100% "normal" in the normal sense of the word. I was a tad relieved when I finally saw their little eyes droop and the mouths stretch wide open in a hippo-sized yawn. It was nap-time -- code word for "hit the road" so the boys would sleep the whole way home.

Two and a half hours later, we backed into the driveway and when I shut off the car, my well-rested boys stirred, looked around and excitedly said, "HOME!!!" My husband came out to meet us as the boys ran to him yelling, "DADDY!!!" A beautiful, special, normal welcome-home scene for a beautiful, special, normal family!
Perhaps someday that word -- NORMAL -- won't mean what it has come to mean for so many of us with "SPECIAL" kids. The sort of exclusionary disclaimer it's become! Hopefully, someday we can get back to it's old meaning of "business as usual" and the "status quo". I don't mean I wish to get back to a life without my special, or "special", kids. I mean I'd like to get back to a life without those "special" meanings. The days when special was special and normal was normal... with no underlying connotations. I like the words -- and life -- better that way.

Wednesday, July 15, 2009

Special Exposure Wednesday - Asleep At the Wheel

Like my beautiful little boy, I've been asleep at the wheel.

It seems I neglected to visit the blogosphere this weekend! Sorry!

And this one below... Because a few of you commented on my blog banner photo, here's the whole pic. I just love this beach shot, taken at sunset on the last day of Summer (the day before school started) last year!

Friday, July 10, 2009


I know, late again. Used to be I was only ever fashionably late at 15 minutes and counting. Nowadays, I consider myself lucky if I'm only a day late. You should see my To Do List, I've got things on there that are 6 months overdue... and I'm being kind (to myself). No kidding!

I used to be so good at checking off absolutely every task on a daily basis and locking my office door at the end of the day knowing I'd completed EVERYTHING on my list. Now, I'm thankful there's still a list... an unfinished list means that I must be out enjoying life and no longer driven by the task master (Beast that she is/was... I know her name and it is me!) And, that means I still have a job (as a SAHM). I don't see any one else stepping up and ain't no one touchin' the stuff on THAT list. It's nice to be needed... Wanted, even. So, what else am I thankful for?

[1] My husband. For the calm and peaceful and faithful man that he is.
[2] For a nice, quiet run along Mill river this morning.
[3] For a sunny and fun-filled afternoon feeding the ducks and playing in the kiddie pool. No, not me, the boys and the old soul.
[4] I am unbelievably thankful that it's Friday. No school for the boys for 2 days. My kids and I all need the break. (Whatever happened to summer's OFF?) I'm looking forward to sleeping in --if only for a half an hour with my luck -- making my famous chocolate-chocolate chip pancakes for breakfast, giving leisurely baths to all 3 kids and hanging out all day here at home... in the yard... the pool... the sprinkler... the slip-n-slide... the treehouse... having good old-fashioned summertime fun.
[5] I'm grateful I still have friends that invite me and my brood for festivities. This weekend is slated to be an enjoyable series of get-togethers with great old friends... and I am soooo looking forward to it. I love my friends and I miss seeing them on a regular basis! I'm sure we're in for a lot of great laughs.

Hope you all have as good a weekend as I have planned.

Wednesday, July 8, 2009

Special Exposure Wednesday - Endless Summer

Brian early in the day... not too sure about the sand yet
(notice the left pinky in the air... that says, "ewww")

Olivia eternally in her element at the beach

Michael more than comfortable in the sand

Olivia's leap of faith!

And Brian's... he'd follow his big sister to the center of the earth... Literally! Love the running arms, hands-free slide and, finally...
Safe in the hole! That's more like it!

For more Special Exposure Wednesday, visit!

Sunday, July 5, 2009

ANGELS AMONGST US - Beach Bum or Angel in Waiting? What's the Difference?

It's 3:00pm at the beach and we're about to bring our Stay-cation to an end. We pack up the lean-to/half-tent thingy that the kids just LOVE at the beach. We pack up the sandy towels, the shovels and pails, the fold-away chair and all the shoes. We collect whatever debris we've accumulated and throw it in the trash cans made available for this purpose... it's important to keep the earth clean! I hand the old soul her watering can full of the baby sea shells she collected along with her flip flops and plop the boys into their respective sides of the giant, red, double jog stroller.

Now, for the 1/4 mile trek -- that requires weaving in and out of (as opposed to running over) the other sun-bathers still laying out on their beach blankets enjoying their summer vacation. The trek that takes us back to the boardwalk, pit stopping at the rinsing showers before continuing out to the parking lot where our steaming-hot chariot -- the old mini-van -- waits to carry us home and back to real life. Right? OK, so where was I? The 1/4 mile trek... yes, I exaggerate. Quite a bit as a matter of fact. When I was a kid it might have been a 1/4 mile but what with erosion it's probably 500 feet... Mind you, it's 500 feet with ME pulling the DOUBLE STROLLER packed with beach supplies AND 80 lbs of boys! Don't knock it until you try it!

And, yes... unfortunately, Hubby's back is still out. I'm lucky he even played along with this whole stay-cation thing at all given the amount of discomfort he's been in. So, Daddy and the old soul are walking behind me and I'm pulling. Dragging. Struggling. I should say, I'm huffing and puffing (had their been a brick house I'm sure I'd have knocked it down as hard as I was breathing)! Can't say how "Sarg" was feeling about me doing all the work at that moment BUT, when the skinny little thing... VERY FIT skinny little thing got up and picked up the back end of that stroller -- lifting it straight up out of the sand -- I'm guessing he was feeling a bit emasculated. I was feeling old but thankful! Needless to say, he did not/could not explain WHY he wasn't helping... the fear of throwing his still-not-quite-healed back out again. Fact is, that woman had the power of 10 of me and 5 of him. As she lifted her end and more than her share of the boys' weight she exclaimed cheerily to the boys, "Your Mommy is one strong lady. You boys are very lucky!" I was so winded I couldn't even laugh... could barely thank her... certainly didn't have the wind to carry my end of the stroller and the boys weight and disagree with her at the same time. LOL!!!

We got to just this side of the boardwalk and she put the stroller down -- feigning fatigue, I think -- so I stopped and took a second or two -- or 30 -- to catch my breath, thanked her profusely and told her I could handle it from here. Thanking her again for her help!

I have to say, when I turned around and saw who had been helping me, I was shocked at what a tiny little woman she was! But, you know what? Those angels they have strength beyond their muscles. Beyond their psyches. They have the strength to help those in need -- and let me tell you... I NEEDED help at that moment. Strength that only God can give. And, He doles out that kind of strength happily to His angels who help others here on earth. Thanks to the angel and thanks to God for sending her!!!

Be someone else's angel today.

Saturday, July 4, 2009

Down Syndrome Awareness -- "Back to School" Grass Roots Advocacy -- Part III

My Offer-to-Speak Letter

This is the 3rd post in a series about the Grass Roots Advocacy efforts I've undertaken on behalf of children with Down syndrome. I call my think-globally, act-locally advocacy efforts "Back to School" Grass Roots Advocacy. While my message is inextricably tied to my children who were blessed with the extra 21st chromosome that causes Down syndrome, the message and process could actually work for any population with special needs in any educational arena... though focusing on those in the college crowd who are specifically planning careers working with children with special needs will actually have a direct impact on kids with special needs, like Brian and Michael.

Links to the first two parts of this series:

Part I:

Part II:

Part III is the letter I sent to the local colleges offering to bring my special family in to meet and speak with their students. Obviously, parts of this letter are specific to me and my children and should be customized to your family's experience before you send it out. I've had what I would consider very good results with this letter, being invited to speak with individual classes, multiple classes, groups of students within a department and at department orientations. I have updated the letter in the past two years to expand upon where we are in our process... that is, the process of living a life with children with special needs... which I call "My Eden"!

Current Date

Name and Title
College Name
Department Name
Address 1
Address 2 (as needed)
City, State Zip

RE: An Offer to Speak – Exceptional/Special Needs Identical Twins

Dear (Title & Surname):

As a [addressee's title] in an educational program designed to prepare students for careers focused on helping others, you encounter individuals from every walk of life with varying backgrounds, philosophies and beliefs.

Likewise, as the parent of 3 1/2-year-old identical twins with Down syndrome (DS), I also encounter countless people of diverse backgrounds and beliefs both in my day-to-day life and as the mother of special needs twins who were immersed in the Early Intervention program for the first 3 years of their lives and, after a successful transition from EI to CPSE, now attend an integrated pre-school class (16:1:2) at Brookville Center for Children’s Services at Marcus Avenue. Most of the people I encounter -- personally and professionally – have positive and hopeful attitudes toward my boys and their diagnosis. Some, however, are uncomfortable because they have had little or no exposure to people with Down syndrome and so shy away from and never have the pleasure of coming to know my beautiful boys. While, unfortunately, still others have negative preconceptions – either openly or underlying -- about how DS affects my boys and, therefore, what they are ultimately capable of achieving… Or not achieving. Individuals in these last two categories hail from every age and ethnic group and from all walks of life including nurses, doctors, teachers, mothers, neighbors and therapists. And, they all have one thing in common. They all started out as students… and, perhaps, were never exposed to anything contrary to their limiting beliefs. Not only are their misguided notions detrimental to the development and future potential of children like mine; But, just as important, their attitudes can negatively impact a mother’s beliefs and hopes about the special needs of her child, which can drastically affect her expectations thereby limiting her child’s achievements.

Fortunately, I am not that kind of mother! Rather, I have chosen to seize the tremendous opportunity my sons, Brian and Michael, have given me to help educate people – students like those in your program – who have chosen to work with children and adults with special needs including Down syndrome. My mission is to give your students the opportunity to experience Down syndrome first-hand, to ask questions, get real-life answers and to change the antiquated and limiting preconceptions that may exist… one student, one class, and one university at a time.
The abilities of people with Down syndrome vary widely from individual to individual and each has their areas of strength as well as areas where they may require more help. With appropriate and early intervention each child can develop to reach their maximum potential. My boys, developing mentally and physically on the low end of the “typical” developmental curve, (in what is known as the “borderline delayed” range) are an incredible example of what is possible with support and intervention. I think that every one of your students should have the awesome opportunity to meet them and believe in the possibilities for every child with Down syndrome.

In the past three years, we have been invited to speak with child development, psychology and/or speech & language students at Nassau Community College, Hofstra University, Molloy College and Adelphi University. We have candidly discussed the cause and effects of Down syndrome on Brian and Michael; on their older sibling, Olivia; on me and my husband; as well as our experience with Early Intervention and the transition to CPSE (Committee for Pre-School Education); our approach to their education and development; their overall and specific health issues; how DS has impacted not only our family, friends and neighbors but the community at large; and how the beliefs of their caretakers – your students – can greatly influence the outcome. Now, I would like to further expand Brian and Michael’s positive influence to reach more people who will play key roles in the development and futures of children like them. I would like to bring Brian and Michael (and their sister, Olivia, as available) for an “up close and personal” visit with your students.

It is my hope and intention to change the way the world sees Down syndrome, one person, one student, one visit with Brian and Michael at a time. The students who have had the pleasure of meeting my children are deeply touched – their outlook forever changed for the better. I ask that you present this wonderful opportunity to the faculty in your department and have them contact me directly to set up a class visit. I am available and more than happy to address groups of any size in this regard. To this end, I can be reached at home at (###) ###-####, mobile at (###) ###-#### or via email at [your email address]. I look forward to hearing from you. Thank you, in advance, for your time and consideration.


Maggie (signature)

Margaret [my full name]
“One drop of water raises the ocean.”*

References are available upon request.

* This quote comes from one of my children’s favorite movies. It is the moral lesson in “Dinotopia” where individual differences are celebrated in a society where dinosaurs and humans not only peacefully coexist but thrive by maximizing their differences.

I am certain that each of our letters would vary slightly or greatly depending upon our specific experiences and our unique children. Regardless, the main message is that our children should be addressed as individuals and treated with dignity and respect according to their needs to help them achieve their maximum potential. The goal is to help these students -- the future educators and therapists -- to see the individual first, not the diagnosis... And, to believe in what's possible!

For my next Down Syndrome Awareness post, I'm going to recreate [as best I can] the general gist of the message I carry to the students which always covers a few key points illustrated with examples from my family's personal experiences as well as stories we've heard from others. My impromptu up-close-and-personal talk is very much student/audience-directed in response to the questions that are asked and to address the specific area students might encounter in their future work with children with special needs. Stay tuned...

Friday, July 3, 2009

Random Funny Thought by One of "The Boys"

I have a wonderful story to share courtesy of my beautiful 4-year-old son, Brian, who happens to be half of an identical pair AND blessed with an extra 21st chromosome (aka Down syndrome), like his brother. In truth, this is really a "who says my kid ain't smart" kind of brag [spoken with a Rocky Balboa accent given I'm from New Yawk]... but I just have to share it.

My old soul has been indoctrinating the boys into the world of dinosaurs via the 13-film "Land Before Time" ( movie series. My old soul LOVES LOVES LOVES dinosaurs and hopes some day to become a paleontologist in the Indiana Jones vein. She's already managed to make complete addicts of the boys to that adventure series ( and has recently started working on embedding Little Foot as a hero on par with their beloved Indie. Honestly, it wasn't taking hold until she inadvertently captured their attention with the swimming sharp tooth in the "Mysterious Island" adventure. This probably piqued their interest because they recently did a week-long "Under The Sea" study at school which culminated in watching, among other shared treats, Mommy and Daddy scuba diving with the sharks in the Bahamas. Completely intrigued -- with the sharks, not Mommy or Daddy -- they were quickly glued to the television screen as Little Foot and his friends desperately tried to escape the chomping jaws of the "KARK". THAT did it! You could hear the proverbial hook set!

So, the other day while he was watching another of Little Foot's dino adventures --graced with a sharp-toothed "alli"[gator] to keep him engaged -- Brian noticed and inquired about Petri, a flyer. A pterodactyl, to be exact. As I do with any new-to-him word or concept, I break it down and give him as many synonyms as possible so that if/when he wants to talk about Petri again, he has more ways, more words, and even signs, to do so. I explained that Petri flies. I explained that Petri is a "dino bird".... To which Brian replied emphatically, "NO MAMA! Bird not DINO. Bird is BIRD!"

Ain't it the truth! And, he's integrated what I taught him into his repertoire, now referring to Petri as a "dacto". What a smarty!

Thursday, July 2, 2009


[1] I'm thankful for the gift of sight and hearing. As I run down by the river each morning, I'm lulled into a peaceful state of mind with the physical beauty of nature all around me and the sounds of the birds, Canadian geese, squirrels, rustling leaves, water trickling... even the train whistle in the distance. Absolutely beautiful. And, I'm so thankful to be able to enjoy these things!

[2] I'm thankful for all the wonderful animals in the world... especially, this morning, for those animals that grace us with their loyal companionship. I have 2 wonderful and loving dogs and 2 very interactive and abiding cats. All GREAT companions and protectors of my children, husband and myself. We're also dog sitting for a HUGE dog that is an absolute all-around pleasure and an even bigger dog greeted me happily on my run this morning -- he on his morning dog walk with his cat and owner in tow. What a great and loving world our pets make for us. Isn't it?

[3] I'm grateful for the peace of the early morning. It's my time to think, be peaceful and to listen to my favorite music (the guitar picking in the "Til Hell Freezes Over" rendition of the Eagles' "Hotel California" just blows my skirt up!)

[4] I'm more than appreciative that my children are finally coming to that age where they can entertain themselves for a bit in the am to let me enjoy this peaceful time.

[5] I'm glad I live in the suburbs of such a phenomenal and extraordinary city as NYC! It is truly one of the most interesting and exciting places in the world! And, I love being so near it (just 20 miles outside the midtown tunnel!). Today for our stay-cation, I think, we're headed to the USS Intrepid Air & Sea Museum docked over on the West side and then maybe a quick trip to the Central Park Zoo.

Pray hubby's back holds out for all the excitement!

Wednesday, July 1, 2009

Special Exposure Wednesday - With Liberty and Justice For All!

Michael in awe of the Statue of Liberty during yesterday's Stay-cation activity! May we all have liberty and justice regardless of our color, race, religious views, abilities or disabilites.

Funny Thought On The Devil We Know

I've been listening to a number of people vent about their frustrations about parenting their young children seemingly alone lately... that is, without the help of a spouse who is working too much or too tired or disengaged for whatever reason.

I've been told this age (infants, toddlers, tweens, teens -- sounds like every age to me) can wreak havoc on marital bliss and that adding special needs into the mix just puts more pressure into the blender. Speaking on behalf of those with children that are my own kid's ages, young children and their utter dependence can certainly suck the life [as you previously knew it as a single person or as a married-without-children couple] right out of you ... almost but not quite comparable to the joy they've brought me, giving me a whole new lease on life; a new reason to live! Couple that freedom-sucking quality with today's crummy economy, high cost of living and crazy competitive work environments where there's no such thing as family-work balance -- there's only work -- we're seeing many more cases of "Dear in the Headlights" syndrome (No, that's not a typo, I mean dear, not deer.) All of the dear [in the headlights] spouses are frozen -- literally overwhelmed with the responsibility of work, parenting and home -- such that they're physically and mentally exhausted and virtually incapable of getting up off the couch at the end of the day to do, or help, with whatever needs to be done. This is true for working husbands and working wives -- a pitch for those of us who don't get paid for the work we do -- for wildly (or is that widely) varying reasons on both sides of the marital/parenting fence.

Suffice it to say that, as parents, since we brought these kids into the world, we are responsible for them until they are at least 18 years old... Isn't that where the proverbial "they" say our legal responsibility ends... technically? While that cut-off doesn't even get the kids off to college (never mind help pay for that expense) I still know some parents who are counting down the days anyway, LOL. Ultimately, I guess there's not much choice in the matter. But, what if there was?

So here's my funny thought: Have you ever heard the old adage... If we all threw our problems into one big pile and then had the opportunity to choose the problems we wanted from that pile, most people would pick back out their own problems instead of trading for someone else's problems. Supposedly, this is because we're familiar with and pseudo-know how to survive with our own problems already... for the most part. "The devil we know vs. the devil we don't" mindset. Well, I was thinking... for as much frustration as I've heard from folks lately -- and I'm not insinuating that I'm immune to marital/parenting frustration any more than my husband is (We're equally frustrated, LOL. I'm just being politically correct here) -- if we all threw our spouses into a community pile and got to choose the one we wanted out of that pile, I have to say, I am 100% certain that I'd quickly pick my own spouse back out of that pile again! Quickly! Matter of fact, I'm not sure I'd even be willing to throw him into that pile in the first place. With all the complaining I've been hearing from others lately, I'm afraid someone might trade their spouse for mine... and there's no way I'd be willing to take that chance.

In a weird sort of way, this feels like a round-about renewal of my wedding vows. "Yup, I still do. For better or for worse! In sickness and in health. I'll absolutely keep the guy I married 9 years ago."

And, for the record, there's no way I'd be willing to throw my kids into any community pile either (Down syndrome and all). As Brian would say, "NO, MINE!!!!"