Saturday, August 28, 2010

Thinking Thankful -- The Summer That Sorta Wasn't

For those of you who have been following along lately, you know me and mine have had a bit of a rough stretch this Summer.  Truth is, that's the case in more areas than I blog about but hey, life goes on and so must I.  All those bumps in the road could bring a girl down if she let them... But I don't. Can't!  I've got kids to take care of and a life to live.  I've got to stay focused on all the good stuff -- and there's a LOT -- in order to weather the storms.  So here goes:

[1] I wish I could say I've been successful losing weight during these stressful past few months.  Truth is, stress and weight loss are strangers.  When one's around, the other is generally no where in sight!  For me anyway.  But -- and it's all about the size of the butt, right? -- I've got my good health.  My body is strong.  My mind is focused... most of the time.  And my spirit is peaceful.  That's huge... even if I am too (LOL)!  My weight and my ability to move the scale in a downward direction will come in time.  Meanwhile, when I really think about it, I'm actually proud of my body and it's abilities... which far outweigh (pun intended) it's DIS-abilities. 

[2] I'm thankful that my parents are still here with me.  I lost an Uncle yesterday.  My Godfather, actually.  He's been declining for some time and living in a nursing home so it's not as though it wasn't expected to the extent that you CAN expect such things are going to happen at some point in the future.  Still, it marks the end of an era.  Of all my aunts and uncles on both sides of the family, there is only one PAIR left.  All the other better halves (or lesser halves as the case may be, LOL) have gone on to phase II.  But, my Mom and my Dad are still in the game of Life (though not together so I wonder if that has something to do with it).  They each have their share of minor-ish health issues but they're strong willed and able bodied (mostly) and I'm thankful I still have time to tell them how much I love them. 

[3] Big news!  I got a new car!  Yay!  My trusty old stop-gap Silhouette was diagnosed terminal a couple of weeks ago and made it's last run as part of our family up to the used car lot last night!  Yes, I'm feeling mighty good about my certified pre-owned, new-to-me minivan. (It's on the Top 10 Most Stolen Vehicles List so I'm not saying exactly what it is or where I live ha ha ha!) 'Cause I want to keep on feeling proud seeing it sitting in my driveway!  I've never wanted a minivan.  As a matter of fact, Sarge and I made a pact that we'd never own one... then along came The Boys.  Ya do whatcha gotta do, right?  If I have to drive one of these suburban establishment icons, the one I've got now is the only one I've ever coveted.  This makes twice in my life that I was blessed to have the car I wanted most... my dream vehicle!  It's even in the color I always wanted... 'cause that's important! LOL.  Am I a Lucky Girl, or what!

[4] The end of Summer always gets me down dooby doo down down.  I LOVE Summer... And this was the Summer that wasn't with all the illness, hospitalizations and illness. (Yup, all 3 are down again: one with a sinus infection, one with strep and one deciding which way he's going to go with his fever!)  But we did go camping twice, swam in the pool a lot, got to the beach, went kayaking and even enjoyed a few outdoor concerts.  We even got potty trained!  Considering our limited opportunity and difficulties, we did OK.  And there's still a week to go!  If our latest round of treatments go well, weather permitting we'll be at the Zoo on Tuesday with a slight chance of Splish Splash on Wednesday.  Filling the remaining days with boogie boarding at the beach, some more pool time, hopefully one last beach concert and -- who knows? -- maybe even a road trip in my new car to Washington, DC to pick up a double kayak from a friend looking to donate it to our good cause. (You can't kayak a family of 5 with 2 single kayaks... but 2 singles and a sit-on-top double? Now you're talking!)  While we're down there we can hit the Smithsonian for a live stroll through Night at the Museum II, one of The Boys' favorite movies!  We'll have to see what develops in the petri dish, what heals and what falls from the sky... but I plan to make the most of the 8 days I've got left one way or another!

[5] And finally, as I look around at my sick kiddos laying around me on the couch as I type this -- patiently waiting for me to put a new movie on -- I'm thankful for their extraordinary good health. I know that sounds funny with our current and active diagnoses of strep, sinus infection and ??? accompanied by 100+ fevers, body rashes, sore throats, coughs and sniffles.  But, the truth is, my kids are incredibly healthy.  Stop laughing and hear me out.... We have no heart defects.  No digestive difficulties.  No eye disease.  No immune system issues.  No chronic health problems.  I am soooo thankful for their good health!  THEIR bodies are strong.  Their minds are clear and focused.  And their spirits -- ahhh, their beautiful and peaceful spirits  -- bring a smile to my face every time....

Thank you God for these beautiful gifts!

Thursday, August 26, 2010

Integrate! Include! Provide Peer Role Models!

One of the comments about the boys riding a tricycle really struck a chord.  Made me think about what we're all doing here and how we're trying to get that done.  I am an Inclusionist.  That is, I believe that my children learn best when they are included in the "normal" activities that any other child -- with or without special needs -- would experience as a function of living fully integrated in our society, attending our public schools and growing up just like everyone else in our town.  And I mean ALL THE WAY INCLUDED with supports added only as needed to achieve success!

My personal philosophy in raising my children with special needs has been developed through my vast (LOL) life experience (friends and family with various special needs), education (BA in Psychology with Minors in Psychology for Exceptional Children and Art), and constant review of best practice research as well as talking to everyone and anyone with a thought on the subject.  I could be wrong... but I like to think I've supported my beliefs with scientifically-proven facts.  I'm open-minded such that I continue listening to others' philosophies and reviewing the research... But so far, nothing flies in the face of the inclusionist philosophy as best practice... for me.  I am also a to-each-his-own Mama.  So, I'm talking about me and mine here.  You do what you want!  BUT....

Back to the Riding-a-Bike comment:

I tried like heck for years and years to teach The Boys -- encourage them, reward them -- to ride a tricycle.  And my beautiful Little Men, who happened to have been born with an extra 21st chromosome, are only 5-years-old so this amounts to a tad more than half their lives.  I pulled and pushed and dragged and kicked until my back was sore on every different version of every different ride-on toy with pedals -- trikes, bikes, big wheels, scooters... you name it, I tried it -- to help them learn to ride.  The most I got, independently, was 2 rotations of the pedals... which I was actually OK with... sorta. I figured this would eventually develop into 3 and 4 rotations, then 10 and 100 rotations.  The school Physical Therapists worked on it.  The Teachers Aide worked on it.  I worked on it.  Still, at 5, we were holding steady at 2 rotations with no progress beyond that in sight.

And then, last week, we went camping with about 40 of my cousins and a few friends.  Collectively, there were in excess of 20 youngish children in our group -- from 1 to 15-years-of-age -- riding bikes of all types and sizes.  More than half of them were near the boys' age and riding up and down and up and down and up and down the car-less camp road right in front of our camper.  All day long and well into the night, bicycles were the preferred mode of transportation -- to the beach, the playground, the camp store, the bathroom, the neighboring tent or camper, around the horn and anywhere else one wanted to get.  And this was the case, not just in our group but throughout Hammonasset's HUGE campground.  Everywhere The Boys looked, kids rode bicycles, tricycles, big wheels and scooters.  Adults rode bicycles.  Bicycle wracks could be seen on every car.  Bicycles stands graced the outside of every public building.  And bicycle helmets rested on every picnic table.  Bicycles... with "TYPICAL" children riding them.... as far as the eye could see!

So it's no wonder that just 3 days into the trip, the boys confiscated their cousin's trike and pedaled like mad men, as you saw in the videos in my last post.  I'd mistakenly thought we were so far from actually riding I did not even bother bringing our latest pair of now too-small-for-the-boys-to-ride tricycles with me on the trip.  Why?  Just more "stuff" they wouldn't use, I thought.  Well, the trike they confiscated was nearly the same size and type as what we have at home, IN the house and always readily available for riding!  It wasn't properly fitted.  It wasn't developed for children with special needs.  But there it was... AVAILABLE when their self determination to ride -- teased out by their typical peers -- struck them.  And, I'm CERTAIN that the desire hit because they wanted to ride with the other kids, to be just like the other kids.  They wanted to do what the other kids were doing, go where the other kids were going and get there the same way the other kids were getting there... on bicycles!

It wasn't the little boy in the wheelchair that encouraged them to ride that trike. Shockingly, one doesn't learn to ride a bike from someone who can't ride a bike. No more than one learns to talk by being around people who don't talk. The Boys did it -- and so, eventually, can the little boy in the wheelchair once he gets that cast off his leg -- because they saw it being done by their peers.  By "typical" children...  And, DARN-IT, they wanted IN!

The research shows that this is how INCLUSION works in every area of life.  The other kids climb the ladder at the playground.  They climb.  The other kids eat their lunch by themselves.  They eat.  The other kids write their names.  They write.  The other kids read the books.  They read.  The other kids talk so everyone understands.  They talk.  I've seen it work in my own little family pod over and over again.  How could it work any less in the bigger picture?  In the community?  The school?  The world?

Yeah, I'm an Inclusionist.  If you haven't tried it yet.... give it a shot.  It might work for you too!  And, as a function of my on-going research in this area, let me know how it goes.

Wednesday, August 25, 2010

You NEVER Forget -- Like Riding A Bike!

We camped this past week... me and the kids.  There were challenges and triumphs but the biggest of all...


I mean really rode... not just 2 rotations of the pedals as they've done for about a year now.  My Big Little Man just got on his cousin's trike and rode.  So the Little Man said, "My Turn!" and followed suit... lest his brother grab all the limelight!  So, instead of pics today, I'm sharing video thanks to my girlfriend who had the wherewithal to grab her phone and shoot!  Though we missed the initial moments where he first jumped on and rode, you can see that they get it now!  Priceless!

Gotta go buy myself 2 copies of that trike!

More Special Exposure Wednesday on 5 Minutes For Special Needs!

Sunday, August 15, 2010


I'm inclined to reinstitute my Thankful Thursdays or Thank God It's Friday posts because I find I'm less mindful of ALL that I have to be thankful for without making that concerted effort to write it down at least weekly. And I post less often too! So, long over due, here's what I'm thankful for lately:

[1] I am ever so grateful that God saw it fit to spare my little boys too much illness and mal-effects from their stint in the hospital suffering from pneumonia recently. It was a tremendous learning experience about my boys and the minor way their Down syndrome impacted their illness and wellness... And, I learned how much who they are impacted the outcome even more. Thankfully, we're over it now... but being in Schneider's Children's Hospital versus our community hospital really put the whole thing into a grand perspective. We were just there waiting to get well again while others were struggling desperately for their lives and good health. As friends and family put The Boys on their prayer lists I was asking them all to add the other critically ill children we shared the ICU with to their lists as well. I'm still praying for all those babes and their parents.

[2] I'm thankful that the quick-fix minivan we purchased upon the birth of our twins survived for as long as it did and didn't cr*p out on me until after the boys' 60-mile-a-day school commuting was pretty much done. It did it's job well and for not much money. I complained about it not being stylish only half as often as I outwardly appreciated it for doing its job... getting me, my kids and my stuff safely where we needed to go. And thanks go to Jan, my beloved friend Lori's hubby, for finding it for us on eBay on such short notice those long 5 years ago! Our Silhouette will be moving on shortly to it's final resting ground with tons of very funny stories to tell it's new friends at the junkyard about this last crazy family that owned it.

[3] I'm grateful to have so many wonderful employment opportunities in such rough economic times. Come September (or so), when the kids go to school, I'll be re-joining the workforce. I have a few potential choices so I'm still deciding exactly what capacity and which hat I'll wear for those few hours a day... but I'm looking forward to earning some money (to pay for the new van we're spying) AND to do something for ME... that will hopefully benefit my children as well. I've always felt fulfilled working in the corporate world with a paying job. I'm sure what ever I choose, this will be no different -- especially since most of my opportunities involve some form of advocacy on behalf of my children and all people with Down syndrome and/or special needs.

[4] I'm beyond grateful that I've had the chance -- when so many do not in these tough economic times -- to stay at home and raise my babies up to this point. I used to say that Burger King -- working with my High School friends at 16 years of age -- was my favorite job. That got bumped when I went to Kansas City to help start up Sprint PCS (awesome opportunity with GREAT people). BUT, motherhood and raising my babies has far surpassed both of those jobs. It's the hardest, most fun, least and most rewarding job I will ever have! Payment comes in hugs and kisses and pride in the wonderful people my children have become! It is just awesome!

[5] I'm grateful for my life with all it's ups and downs. I'm glad to be here! And no matter how tough it gets, I'd rather be here than not. My dear old aunt once said, "this getting old stuff is for the birds!" To which I replied, "but it's better than the alternative 'cause I sure don't want to die young!" There's so much more I want to do in life. So much fun to have. Great pride to feel. Achievements to chalk up. No, I'm not done yet! Gotta go out there and live this life I've been gifted to the fullest.

Have a wonderful day all! Try and appreciate the little things today!

Thursday, August 12, 2010

Passion Without Persistence

I recently read a familiar old quote from Calvin Coolidge shared on one of my regular blog stops, Mary Jaksch's Goodlife Zen. Coolidge speaks of the key to success being beyond talent, genius and education, but rather lies in persistence. And persistence is much easier to maintain if you have passion! I'm not necessarily talking about the sexual kind of passion though that does breed success as well... among other things. I'm talking about the deep-down-in-your-gut excitement you feel when you're about to do/get/have/experience something you just love love LOVE! Something you're passionate about. Something you can't wait to do over and over again. (Family blog here, keeping it clean!) If it's something you want, something you're passionate about, then persistence comes easier! And without persistence, what you end up with is unrequited passion.

My heart used to race with excitement at the thought of an upcoming SCUBA dive. Heck, I'd set the alarm clock for 1:00AM to make a high-tide dive an hour and a half from my home. And, I'd jump in the water 2 hours later if the opportunity presented itself again. As a SCUBA Dive Master I assisted in SCUBA classes 2 days a week after work and made an average of 2-4 dives a week during the northeast dive season. SCUBA diving TOTALLY blows my skirt up! Even as I type this, the idea of getting in the water and diving anywhere excites the daylights out of me. Unfortunately, it's been 9 years since I've gone diving... not since I became pregnant with my Old Soul (because diving contraindicated for pregnancy and breastfeeding). As such, I've lost my persistence and, sadly, my passion has been sidelined to other more pressing things in life!

Then there's running. I was never a good runner. Matter of fact, I never referred to myself as a runner at all. The boys' PT said running is when both feet leave the ground at the same time... so I'm not sure I EVER actually "ran". But you can be sure I was out there 7 days a week logging 3-5 miles a day! And I loved it! Cruising the neighborhood, the sunshine in my eyes, checking out my neighbors' landscape designs or spying through lighted windows as folks relaxed into their evening routines, making my way [albeit slowly] down River Road, watching the water gently roll out to sea, all to the beat of my beloved Eagles 'Peaceful Easy Feeling' and 'Taking It Easy'. Priceless! Sadly, it's been a long while since I ran/jogged/did whatever you want to call it, on a regular basis... It's just not nearly as easy to find the time nor as peaceful pushing 100+ lbs of boys yelling "home" in a jog stroller. My passion still exists but my persistence has taken a back seat to other priorities.

You know I could go on... There's a bunch of stuff I love like mad to do but don't get to do much anymore because it doesn't fit into my schedule or is incompatible with motherhood just now. Things like playing beach volley ball, mountain biking, roller blade hockey (I used to love playing defense), going to the movies on Friday night or out to dinner with the Sarge. Those things either don't happen anymore or happen WAY to infrequently.

I've lost the persistence behind my personal passions! The kind I had when I couldn't wait to get there and do that. I'm talking about waking up excited about the things I'm going to do this wonderful day.

Don't get me wrong, I am massively passionate about my children; loving, teaching and advocating for them... No, there is no lack of persistence when it comes to my passion for my children! I'm excited about waking every day to their smiling faces and spending time with them. But I'm not excited about figuring out what to make them for breakfast, lunch or dinner. I hate to cook! I'm not excited about driving them 60 miles round trip to school. I'm not excited about doing laundry, dishes, mopping the floors or vacuuming the house. I am NOT passionate about the daily grind that goes along with the life I'm living just now. I know.... SHOCKING! But, I'm missing the things I'm passionate about! I'm missing the persistence that makes me successful in actually DOing these beloved activities.

Yes, I admit it, I've lost (or more realistically given up) my persistence with a number of things I'm passionate about... and I miss 'em like heck! So, as the parent of two children with Down syndrome and an Old Soul that all lovingly demand my attention, I'm asking for ideas on how to get it back. How do you fit in those activities that you were once passionate about but that have taken a back burner to this truly joyful and wondrous life of special needs parenting... or any parenting for that matter.

Wednesday, August 11, 2010

First Paddle Boat Ride

Camping at beautiful Woodland Hills Campground in Austerlitz, NY
on the Massachusettes border in the Berkshire Mountain foothills.

My Big Man

My Little Man

Sarge and The Little Man

My Old Soul, Me and My Big Man

Sunday, August 8, 2010

The Crystal Ball

Ah, to gaze even for a moment into the magic crystal ball for a glimpse of our future. To know that this will all turn out OK! Wouldn't that be nice? Just a second in front of that looking glass to get the gist of things and know that it'll all work out ultimately. The thing is, I love a good "surprise" and there are so few good surprises left in this world... so I wouldn't want specifics if there were such a thing as a crystal ball. All I would really want to know is that, in general, my life and, more importantly, the lives of my children will be OK... peaceful... easy... "successful" each by his or her own standards. Isn't that a funny statement? Especially when I already know that parts and pieces of my life haven't really been peaceful or easy thus far.... But, I do know that it's all turned out OK... so far!

Finding a rewarding career, choosing a mate, maintaining a happy marriage, raising children -- raising children with special needs -- deciding how to best educate those children, and keeping my wits (and sense of humor) about me are all really difficult endeavors when you're in the throes of it. Looking back (so far, anyway) IN GENERAL, it's been relatively easy. But, in detail, it was and is sometimes extraordinarily hard and painful. Tears flow so much more readily these days than they used to and for so many more important and more trivial reasons and emotions.

The truth is, life is a dirty little affair with major ups and minor downs, huge hurdles and tiny victories throughout. No, I don't know what the details of my life and my family member's lives will be going forward. But I do know all too well what the details of my life/our lives have been so far. Some things I definitely could have done without and, in hindsight, I'm glad now for other things that have come to pass that I would certainly not have chosen, planned or wished for but that have been unbelievable blessings in my life. No one knows how things will turn out. There is no crystal ball. There is only this life to live to the fullest.

So, without the benefit of the crystal ball, I know this: I will find myself again in some career that will either be fulfilling or not. I hope for the former! My marriage will either stand the test of time, commitment, financial woes, children, Down syndrome, careers and so many other factors that may or may not contribute to it's demise... or it may not. We will either find ourselves in the 50% that make it or the 50% that don't. I'm working towards the former! And, my children will be well educated. They will grow up and live their lives according to their choices (and my positive influence hopefully, LOL) as independently and successfully as they are able. I don't, in fact, know specifically how well they will do. But I'm sure, in general, that it will be awesome in my eyes and, hopefully, in their eyes and in the eyes of the critics. In all of these areas and in my life in general, I believe that regardless of the specific ups and downs that grace our daily lives, it will all turn out OK in the end. That doesn't mean I won't fret about and/or shed tears about all of these things while I'm in the throes of it!

There's a line in Finding Nemo where Dory says to Marlin regarding his over-protection of Nemo, "Well you can't let nothing happen to him or else nothing will ever happen to him!" She's right! That's no way to live a life! We have to be in the game, right? We have to jump in, make choices, make mistakes, find our own way and be gracious enough to receive the good with the bad. We don't get to pick and choose, in advance, which good parts or which bad parts we'll take or pass on. But, we do have choices about how these events play out in our lives and how we view the outcome that is our life, in general. And in the end -- despite the rough spots --I do believe it will all be OK... however it turns out!

But that doesn't mean I STILL won't worry about it... just a little bit (LOL).