Sunday, January 31, 2010

Down Syndrome Awareness Meets Random Funny Thoughts -- Spider Man & PROMPT

My husband is not a real touchy-feely, let's-talk-about-it kind of guy. Rather, I've come to learn that he's a man of few words. But, early in the process of dating him, I didn't know this and, I think, he was working hard not to expose his secret identity too soon since I'm both touchy-feely and loquacious. So, when I asked him to tell me something key about him that I would not otherwise find out easily or quickly, I'm sure he cringed inside. But without hesitation he said, "I'm Spiderman!"

GREAT answer! (LOL) That might have been the moment I knew he was THE ONE. After all, it's not everyday a girl gets to kiss Spiderman -- upside down or otherwise (Have you seen the movie?) -- or to snag a guy with a great sense of humor in her web!

I've never forgotten his response nor let him live it down. And I've told my children that story more than a few times. Of course, like me, the Old Soul thinks it's hysterical that her Daddy is so witty... if not really Spiderman. But, we'd never gotten any reaction from The Boys, although they know and love Spiderman ALMOST as much they love their Daddy.

As you may have heard, The Boys recently started their at-home PROMPT language therapy services awarded at their last CPSE meeting. Though this method is predominantly touted for children with apraxia, it can work wonders on children who have oral-motor processing delays and low oral muscle tone. That pretty much describes us... and many kids with Down syndrome... and some without too! Well, with just two sessions under their little belts, -- by all counts, in school and at home -- their language and articulation began to explode. Some of this, I'm sure, is just The Boys remembering skills they'd previously acquired. In their past Early Intervention life they'd consistently received PROMPT but had forgotten much during their hiatus (their preschool doesn't offer it which is why we fought for home services). Some of the explosion can also be attributed to the application of their newly recalled skills to their newly acquired vocabularies. And, apparently, some is the application of their new language skills to the existing thoughts they were previously unable to express. Very cool!

So when Daddy came home from work the other day to the usual fanfare, to stimulate language -- as I am ALWAYS doing with them -- I asked my Big Little Man what Daddy does at work. And he answered with great pride and conviction:

"Daddeee ith Piderman!"

AMAZING and pretty close to the truth. He does spend his time catching thieves just like flies.

Angels Amongst Us -- Through The Wires

I dialed a wrong number yesterday. You know, I realized today that this doesn't happen often with all the phone book options embedded in the telephones these days. I dialed my cousin to find out how HER ailing Dad is doing and to fill her in on how his brother, my ailing Dad, is doing. But I neglected to dial the "1" to get out of my area. So my call went local and my cousin's area code became the first 3 digits of my wrong number... and so on. The phone rang and rang and I thought, "how odd that she doesn't have her answering machine on" when the mechanical voice interrupted and said, "your call to 516-860 blah blah blah could not be completed." 516? Oops. I was trying to reach Connecticut. So I hung up and prepared to dial again when my phone rang and startled me. It was 516-866-blah blah blah asking me if I'd just called her.

"I did but I dialed incorrectly. I'm so sorry to have bothered you. Just a wrong number!"

To which she answered, "There are no wrong numbers. I have had many wonderful conversations with people who never meant to dial my number. But, I won't keep you. I hope you have a wonderful day! As a matter of fact, I hope you have an absolutely WONDERFUL life! It was nice talking with you. And remember, smile at everyone you see today. It'll bring you both joy."

I wished her the same. Thanked her profusely for her well wishes, returned them in kind and hung up... hesitantly.

A little crazy? A little bubbly? A bit odd? Sure! But it made my day! Honestly! With all the stress and emotions racing through the veins of my life right now, a pleasant and sincere wish for a positive outcome was a blessing. A blessing this woman bestowed on me, a perfect stranger. I think I'll save her number into my phone book and call her again today ;o).

In the meantime, I think I'll wish the same to the next person who unintentionally dials my number. Then, I'll take her advice and smile at everyone I see today.

Thursday, January 28, 2010

THANKFUL THURSDAY - Here Comes That Overwhelmed Feeling Again

Isn't life just too crazy sometimes? Seriously! My life feels overwhelming just now what with my Dad's illness, the boys' transition to kindergarten, impending re-surgery for the boys, job possibilities to consider etc. etc. etc. blah blah blah. Right? We all have these tangled webs, these unmade beds. My webs are certainly tangled... not from lying, as the old proverb goes, but from LIVING! And these days, the beds in my house are all rather unkempt! I personally hate getting into an unmade bed... but here I am! My Grandma Bea used to say, "you made your bed, now lie in it." And so I do! I love the bed I made for myself. Truly. I wouldn't trade any of this for the world (though I might switch around the timing). This is the life I was gifted and it's wonderful. It's just that in our lives we don't get to choose when the proverbial [stuff] hits the fan. So, along with my unmade beds there's a tornado blowing to boot.

Fortunately, I do get to choose how I deal with the resulting chaos. I could hide under that unmade bed and ignore it all or I can make decisions, take action, move forward, be proactive. So that's my tact:

[1] I'm grateful for my computer and the Internet that puts so much incredibly pertinent information at my fingertips making it easier (note: I did not say easy) to find supporting research to help me make the most apropos educational and therapeutic decisions for my boys... who, for those of you who don't already know, happen to have been graced with an extra 21st chromosome. Having the research and knowing the law is half the fight. (The other half is convincing the committee.)

[2] I'm thankful to the decision-makers who selected me to participate in an extraordinary [and free-to-me] 2-month Lay Advocacy training program offered by the Long Island Advocacy Center so that I may better learn and apply the federal and state laws governing special education as I pursue the best course for my beautiful children and help others as they choose their best course.

[3] I'm also thankful to be thought valuable and knowledgeable enough to even be considered for a job helping others apply the laws pertaining to special education as they navigate through the labyrinth that is their school system in pursuit of appropriate services for their children with special needs. Bad timing for me but I'm honored to have been considered. Until my timing improves I'll have to go on advocating as a lay person.

[4] I'm unbelievably grateful to have the choice NOT to work right now in favor of focusing on my children, and my crazy unmade beds and the coinciding windstorms.

[5] I wish I could spend a few hours relaxing in a hot spa-tub full of bubbles with dimmed lights and a flat screen TV playing a mindless romantic comedy to lose myself in. Mind you, there's no way any of that's going to happen any time soon (not to mention the fact that I don't have a spa tub and there's no flat screen TV in my bathroom... LOL). That's why I am incredibly thankful for the luxury of my hot, daily, 2 1/2 minute shower and every moment of warm and cozy sleep that I manage to steal at night. That's as close as I'm gonna get to the above dream... and I am ever so grateful for it!

Wednesday, January 27, 2010

Special Exposure Wednesday -- Boys Will Be Boys

The Boys find a new use for their bath-toy suction cups!

Tuesday, January 26, 2010

Random Funny Thoughts -- It's As Plain As The Nose On HIS Face

It's been awhile since I told an "Old Soul" story. She is laugh-out-loud funny with her straight-forward observations and commentary on the crazy world we live in. Yesterday, she just plain old cracked me up.

I brought my dear old Dad with me on my school pick-up rounds (as I sometimes do). Usually, I'm running "just-past-the-nick-of-time" and make it to her school 2 minutes post-dismissal. This actually works out well because the Old Soul typically brings up the rear in her class (she moves slowly... I just do too much) and I end up pulling into a newly vacated parking spot -- previously taken by a parent who lives their life in early or on-time mode (which is not me). I barely come to a stop right in front of the door as she walks out. It works well for us! However, inexplicably, yesterday we got to the school a bit early and couldn't find a parking space close to the door so I had to park down the block. I left Grandpa in the car with the boys and ran out to get my little Hippie Chick (aka the Old Soul). As we headed to the car happily holding hands and skipping (yes, both of us), this exchange ensued:

O: Did you leave the boys in the car all by themselves?

M: No! I'd get arrested for that. You're not allowed to leave little kids alone.

O: Are they at home?

M: Nope. They're in the car waiting for you!

O: Who's in the car with them?

M: Who do you think?

Nearing the car you could barely make out the vague image of someone in the front passenger seat. She immediately started laughing.


She's right! Broken 7 times playing football in the pre-face guard years, his "big old nose" DOES stand out... giving the phrase, "it's as plain as the nose on your face" a whole new meaning in our family!

Sunday, January 24, 2010

Down Syndrome Awareness -- The Science of Learning in Children with Down Syndrome

I'm the first one to reassure parents that every child is different (despite sweeping diagnoses). Each child has their own unique areas of strength and weakness. Each their own learning style. I should know, right? I have identical twins with Down syndrome and they are all but identical when it comes to their strengths, weaknesses, interests, personalities and even learning style. BUT (because there's always a but), they do both have Down syndrome. And the very definition of a syndrome is a group of common characteristics typically found in those belonging to the "group". So, yes, it's true. There are similarities across people in the Down syndrome population.

Grouping people together by characteristics and then scientifically studying their behaviors, strengths, areas of weakness and reaction to various interventions as a group -- is one way to find effective treatments and methods for medical, physical, emotional and educational dilemmas that group faces. It's called research! Scientists may also choose to study an individual within the group and then apply their learnings to the group to see if their assumptions stick. It's all of this research -- years and years of proving over and over again that a particular solution is effective for the group, in general, and worth trying on the individual member of the group to solve whatever question the research was conducted to address -- that changes the way we treat those individuals going forward.

So, I turned to the research to prepare for my recent parent-requested (read: I requested) CPSE meeting to address my boys' lack of progress in the area of speech and academic achievement. And I came across a significant body of evidence discussing common learning deficits found in children with Down syndrome. I found research as early as 1983 explaining that around the age of 5, typically developing children naturally begin to use an internal rehearsal mechanism to acquire and store information in short term memory and then with additional rehearsal and organization to transfer that information into long term memory and, ultimately, into permanent knowledge. However, it was demonstrated that children with Down syndrome have a tendency to NOT automatically implement this rehearsal mechanism thereby having difficulty transferring and committing new information into their long term memory banks. By teaching the children how to rehearse new information externally, the researchers found that children with Down syndrome were able to acquire and retain (in long term memory) the information in question.

Rehearsal is exactly what it sounds like. It is the repetition of the information being presented over and over and over and over (and with children with Down syndrome... over and over and over again) until the child is able to recall it... Over and over again until it is learned and the information is available in short term memory. Then the continued external rehearsal and organization of the information into an understandable framework for the particular child facilitated the long term recall of said information. Simply put, repeating the information over and over again, was shown to help children with Down syndrome learn and commit the information to memory such that they would be able to accurately recall and understand the newly learned information. (My guys are excellent at repeating the lines of movies they've watched over and over again... and, ultimately, accurately explaining the movie's plot.)

Interestingly, the research shows that this same learning deficit -- the absence of internal rehearsal -- exists in other special needs populations. Specifically, children on the autistic spectrum also often fail to implement internal rehearsal and organization. Because of the increasingly high incidence of autism over the past 30 years, extensive research has been done on the learning styles of children with Autism Spectrum Disorder.

To address the absence of internal rehearsal, the Applied Behavioral Analysis (ABA) methodology of Discreet Trial Instruction (DTI) was successfully applied to assist children on the spectrum with acquiring information and transferring it from short term memory into long term memory. Discreet Trial Instruction involves high repetition of external cues coupled with consistent reward for a correct response. This is classic and rigid Behavior Modification where a stimulus --> response --> reward process has been shown to be highly effective in helping a child commit the new information to long term memory. Think Flashcards with external rewards (candy, stickers or hugs, even) for correct answers.

In truth, there's nothing extraordinarily new here except for its application to a particular group. The scientific application of these methods to children with Autism AND to children with Down syndrome via research studies proves -- did you HEAR that -- PROVES that ABA Therapies and DTI are successful methodologies for teaching children with Autism AND Down syndrome a breadth of skills including academic, behavioral, language, daily living and more. In short order, I had uncovered more than 9 research studies spanning 20 years confirming these findings over and over again... All pertaining specifically to children with Down syndrome.

The outstanding question in my mind is, why is the standard protocol for children with Autism to automatically receive up to 40 hours of ABA therapies a week.... But there no such protocol for children with Down syndrome when it's been shown to be effective for both populations?
I'm doing my part to change this! At that CPSE meeting I mentioned above, I fought and won ABA services (including DTI) for my children with Down syndrome. And during the application of these services, my children will be studied as research subjects to add to the body of evidence PROVING this is an effective methodology for teaching children with Down syndrome.

If your child with Down syndrome is having difficulty retaining the concepts being presented to him or her, try implementing ABA and Discreet Trial Instruction methodologies. School districts should be made to provide these services once you've shown, via lack of significant progress, that the existing teaching methodologies are not working for your child, then presenting the research showing that ABA therapies are an effective method for teaching children with Down syndrome. Doing so should gain you the services as it did for me.

Together, we can change the world... or at least effectively educate our children with Down syndrome so that they can live more independently and become productive members of society.

Down Syndrome Awareness -- "Disability" is a Relative Term

It's midnight on a Saturday night and I just got home. No, I wasn't out partying like in the good ol' days. I was out, once again, retrieving my dear old Dad from another of his midnight forays. This time I was alerted that he was on the move and able to locate him and pick him up a mere 15 minutes or so after he'd walked out his door... thanks to Verizon's Family Locator service. He wasn't "going home" to Queens or Brooklyn where he grew up... the way he's done a few times before. Tonight, he was just "out for a stroll". Barely a quarter of a mile from his home of 44 years but he had no idea where he was or how to get back home. So Dad and I took a quick trip to Pathmark because that was my ploy, "I was just running out to get eggs for tomorrow's breakfast when I spotted you walking". I certainly don't want him to know that we're tracking him or he'll purposefully forget to bring his phone. And, being out in public in my PJs at 11:00 PM on a Saturday night when everyone else was dressed for an evening of dancing gives a whole new meaning to the term "walk of shame". As I got "the look" from passersby -- a different look than the "what's wrong with your child look" we mothers of children with special needs get all the time -- I wished I could just point a thumb over my shoulder at him and say "Alzheimer's... night walking" by way of explanation. How horrible is that? I realized that would be like pointing to my children and saying, "Down syndrome" as though that excuses or explains anything about me or them. (I'll have to think on this to make some more sense of it!)

So I brought him home and he said he was going to head out again. I knew I couldn't let that happen so we ended up sitting and watching a DeNiro movie together instead. Finally, my sister (who lives upstairs) showed up and together we calmly tried to explain to him why he can't go out walking at night... He didn't get it. He's not ABLE. His Alzheimer's-riddled brain doesn't understand anymore.

If yawning is any indication, I think he was tired enough to retire for the night by the time I left just past midnight. I haven't received any text messages so I'm assuming he's gone to bed by now.

As I drove the half mile home, I felt good knowing that despite all this late night excitement, my children were sound asleep at home with their Daddy, all safely tucked into their beds. That's when I decided that having two children with Down syndrome is a breeze compared to having a Dad with Alzheimer's. Life does not afford us the opportunity to choose our disabilities or the age of onset for ourselves or our loved ones. But tonight's lesson came through loud and clear.... Truly, "disability" is a relative term!

Friday, January 22, 2010

THANKFUL THURSDAY - Even When I Have To Reach For It

There's a lot going on in my life right now, hence the sporadic posts shared in fits and starts. I'm sure I'm less busy and less stressed than many of you and maybe a tad more busy and more stressed than some. Just the same, it seems I'm being pulled in every different direction. It's times like these that dwelling on the crazy stuff can bring even the best, most stable folks down (and I'm not sure I'm one of those)... so it's important to stay mindful of the good stuff going on. So here goes:

[1] Again, I'm thankful that my Dad is still alive and kickin'. His Alzheimer's-riddled mind might well be "senile" (his word choice, not mine), but he's here and for me and for my kids -- who absolutely LOVE their Grandpa -- that's still a blessing and something to be thankful for. We still enjoy our time together, laughing and joking around as much as ever. I have friends who've lost their Dad's and would give anything to be in my shoes right now. Glad he's still here and still an integral (if not always easy) part of my life.

[2] I'm thankful for technology like Verizon's GPS-based Family Locator plan that will help my sibs and I keep track of Dad as he goes on his merry way. He's still physically healthy enough and loves to go out walking. This technology allows us to breath easy knowing if he does get lost and can't hear his cell phone ringing, we can still find him and bring him safely back home.

[3] I'm thankful for all the people who work so hard to provide much-needed and impactful services to children with special needs (and to old folks with special needs). When they're mindful of their purpose the results are always phenomenal. And, I've found, more often than not, that those folks who choose helping professions actually are predominantly focused on doing good (versus fulfilling their own or their employer's [read budgetary] agenda). I've recently, and thankfully, had the good fortune to be surrounded by such people as we try to piece together services that best meet the boys' needs (Dad being one of the boys here).

[4] I'm grateful to have the chance and the ability to give a little something back in the way of advocating and helping other parents with regards to gaining services, NY state law, and the education of children with special needs (Down syndrome or any other special needs). I am by no means an expert but I do have some viable information to share and do so willingly with anyone who asks and/or might benefit from knowing such stuff. There's so much on our plates as parents of children with special needs, and researching how best to proceed is a time-consuming and arduous task. Any time I can take existing wisdom from someone who's been there before me is a huge help to me. By the same token, any time I can give to someone who's bringing up the rear, walking in my shoes, is a way for me to pay it forward. A way for me to say thanks to all those who have helped me on my journey thus far... by helping others on their journey. (The added bonus here is, the more I pay it forward, the more peaceful the path will be for my children with Down syndrome as they grow up in this crazy world.)

[5] I am thankful for this extraordinary and wondrous life I have. I am so glad that I am here... right where I'm supposed to be, with these beautiful children of mine and this loving husband that I chose and who chose me back. I'd rather be right where I am than not be at all. Sadly, I was reminded yesterday via a telephone chat with an old friend who has a family member that would rather not be... that not everybody feels this way. Lucky me that I do! I love life! I love MY life. Sure, I recognize that there are aspects of my life that could be better... knowing that is what keeps me striving to improve myself and my family's existence. Ahh to be human and know it... Even better, to appreciate it.

All that being said (or typed), I sure could use a relaxing all-expenses-paid vacation on a sunny beach anywhere in the world that might help me forget about all the craziness that's going on right now in this life I'm having so much fun living. Key word there is VACATION: A temporary respite from the usual routine. I'd come back with a little more sleep and a little less stress and jump right back into the fray.

No, I would not trade my life for any one elses. I would not change a a thing about the colorful and loving players that are in my life. It all happens for a reason and it's our job to discern that reason as we go forward. The good, the bad, and the ugly; I'll take it all "as is" as they say with a little extra love and laughter...

Right about Now you might be thinking, "how can she be so darn happy and content with her life? Isn't there anything she wishes were different?"

Just so you know I'm a fallible and imperfect human being just like every one else, there is one little thing I might change... I wish I could miraculously add a couple, few zero's to the balance in my savings account without having to work for it (LOL... can I hear an "Amen to that, sister"?). I honestly don't want for much... but happiness guru, Gretchen Rubin, author of The Happiness Project found that "money can buy some happiness [or peace of mind] if it's used right." I'd be willing to test that premise with a little more well-spent (or well-saved) money to "buy" me a little more happiness and peace of mind.

After all, who amongst us couldn't use just a little more happiness?

Aaaah to dream...

Thursday, January 14, 2010


I am in the midst of personal choices, educational choices, family choices, financial choices, choices, choices, choices... I can go on and on but I'm sure you get the picture. Here's the thing, choices are GOOD even when they're hard or when you don't know the right thing to do. Here are a few of the choices I'm thankful I have right now:

[1] I'm thankful that we, my siblings and I, have choices as to how best to proceed with my Dad. We still have choices. He's still here, with us, and there are options as to how best to care for him. How best to help him live out the rest of his days most happily. He's been diagnosed with Alzheimer's and though it's progressing quickly and steadily, there's still time and there are still choices. I'm so grateful for this fact. It makes this whole situation much easier... for me.

[2] I'm grateful to have educational choices for 2 of my beautiful children who happened to have been blessed with an extra 21st chromosome (aka Down syndrome). My amazing little boys need more. They need different. They need unique options and out-of-the-box solutions. And I have those options and will come up with those solutions as the issues present themselves. Sure, I might have to fight to exercise some of those options but they're there if I want them for my boys. The fight is just part of the choosing process.

[3] I am grateful today for the choice of NOT exercising. Mind you, I know I have that choice every day. And, unfortunately, I choose NOT to all too often to attend to everything and anything else but my physical self. But today, I really didn't WANT to exercise. I don't know why. I had the time and chose to be here instead.... blogging. I needed to get some stuff out that needed getting out. The rest of the day is going to be a crazy with schedules and baths and I have the transition to kindergarten meeting offered by the boys' school. I needed some quiet time... so I CHOSE to take it.

[4] I am thankful I have so many income/employment options. I know in this economy that's a tough statement but I know KNOW K.N.O.W! that I have options for making money and I have the option of not being employed (by my self or anyone else) right now. I have a little time and a few options I'm investigating. Trick is not to investigate myself into complacency and inaction. Fear of the unknown has a way of doing that to me. I'm thinking there are folks who know me who probably wouldn't believe that statement but, with my plate full of other important things.... choices with regards to what, how and when I rejoin the working world is critical to my sanity. I'm looking. It's coming. But it's the choice that's allowing me to breath easier about the whole thing.

[5] Choices are nice... and are always there. Some don't think so. But even choosing to do nothing is a choice. I'm so glad I realize, feel and KNOW that I have choices. There were tough times in my life when I felt bereft of choices... they were there I just couldn't always see them. I'm glad to be in a place where I have choices aplenty... and they are my friends, helping me to live my life as I choose. There are so many who do not know or feel as though they have choices. (I know, as I said, I've been there in my life.) I wish them all choices that they can see and act upon with open hearts and open minds. I LOVE my choices!

Time to go get the kids. MY CHOICE! And since I chose to have these 3 angels God lent me and I choose every day how best to care for them which includes choosing not to put such beautiful little guys on the bus but rather to drive them each and every day for their safety and our combined fun. That reminds me: it is key to occasionally remind myself how and why I made my choices so I can go on accepting and embracing the choices I've made.

Sunday, January 10, 2010

Down Syndrome Awareness -- Today's Segregation is Yesterday's Institutionalization... And Tomorrow's Mainstreaming

New York is ranked the second worst state in the USA for segregating children with disabilities from the general population. Nassau County is the worst county in the state, responsible for bringing the rest of the state down on the list. How did we get this wondrous status?

New york State was a front-runner in addressing the needs of children with disabilities via institutionalization when that practice was the best scientific thinking on how to raise such children. When the research showed that children with disabilities raised outside of institutions fared so much better than their peers locked up in hospitals, New York State rightfully jumped, albeit slowly, on the deinstitutionalization bandwagon and stopped institutionalizing as a general practice. In an altruistic effort to address the educational needs of these newly freed children, New York State developed a vast and effective special education infrastructure that applied the best new thinking in educating children with special needs. The children were segregated and educated according to their special needs separately from the general population... though they remained in their homes with their families. The best of both worlds was the thinking.

Fast forward a few years and here we are... 2010... and the thinking has changed once again --though not so recently -- on how best to address the educational and social/emotional needs of our children with special needs. Today, the research shows that children with special needs thrive in the same environment they share with their typical peers. The current thinking posits that a child with a disability should be placed in the same environment he/she would be placed in had there been no disability and then supports should be added to help that child function maximally in that mainstreamed environment. This is called the Least Restrictive Environment (LRE). In NY, there's a lot of more-restrictive environments available because of the existing infrastructure from the old-school of thought. From a budgetary perspective, this infrastructure needs to be supported... physical buildings and personnel need to be maintained. To do so, children must be enrolled. Unfortunately, this need is in direct opposition to what the research says and flies in the face of the spirit of the LRE laws. The dilemma: support the infrastructure or mainstream the children with special needs. Though New York's been doing it for years, it is outdated and ineffective methodology... and a terrible waste of funds that could be better put towards the support of children with special needs in the mainstream environment.

While the current thinking supports mainstreaming with appropriate support, the laws are only just beginning to support the current thinking. And, unfortunately, the reality falls a bit shorter than that. I've been giving this a lot of thought lately given the push for out-of-the-ordinary services for my boys... And I've been wondering how the world of educating children with special needs ever morphed from institutionalization to segregation to where we are today... in transition again.

It happened because parents like me, parents like you, parents like all of us who fight for what we know our children need regardless of what's recommended by the status quo. We push the envelope. We reach higher, further and into the deepest corners of our education systems to solve the puzzle. That's how change happens. One child, one IEP, one therapy session, one out-of-the-ordinary approach to education at a time.

What would I say to that very first mother who brought her baby home with his diagnosis of Down syndrome rather than putting him in an institution because she saw more in her child's future than what the textbooks said was possible? I'd say, "Thanks for believing!" Here's to positive change on behalf of all of our children!

Thursday, January 7, 2010

THANKFUL THURSDAY - My Happiness Project Adventure!

Tonight I had the great pleasure to actually meet my happiness guru, Gretchen Rubin, New York Times best-selling author of The Happiness-Project blog and book of the same name. She is the one person I can credit with starting me blogging and for driving me to focus on and doing what makes me happiest. While Gretchen has always been accessible via her blog, it was incredible to actually meet the real person instead of just seeing an image posted in the top corner of her home page. Until tonight, it was sort of like those online chat sessions I use when I need help ordering from There's a picture of a woman in the right hand box of the chat session and there's a name credited for her side of the conversation in the dialog box. The name and voice almost never matches the image... in my mind anyway. Tonight, the image in the box actually came to life. So cool!

[1] I'm thankful that I happened upon the when I did and that it spurred me to begin my own happiness project that is this blog. By writing about the things I write about, I'm able to stay focused on many of the things that increase my personal happiness... helping others, laughing, being mindful of my blessings and recognizing the good in people. Without Gretchen I'm not sure I would be walking on the happy side of life as often as I do.

[2] I'm thankful for the personal invite I got from my happiness guru to attend her book signing. Not only did it afford me the opportunity to meet her in person (I know she's not the Dalai Lama but she's been every bit as influential to my happiness), but it also brought my whole family out of our comfortable and boring old routine tonight. Yeah, we jumped in the mini van and headed west to NYC for the evening. It was so nice to go into the city (a huge treat for me because I so infrequently get out socially), have a fun and delicious dinner -- awesome burgers at Jackson Hole -- with my husband and children and to galavant around NYC for a few hours. A real treat for us all!

[3] I'm thankful for my husband's willingness to participate in this adventure. I know he didn't really WANT to do it. But I know he also recognized it was really important to me... I believe he was even impressed that I knew and was meeting a NY Times best-selling author. I think he might even have enjoyed himself. And he got credit too... running into 2 colleagues from his old stomping grounds on their break at the restaurant he chose for us... he was looking like a real socialite, out on the BIG town on a school night (LOL).

[4] I'm thankful for my children's cooperation too... without which the whole adventure would not have been possible. Let's face it, meeting Mommy's favorite author and happiness guru does not rank with watching Night at the Museum 2 for the 50th time. But the Old Soul and her brothers were real troopers. The Old Soul was actually impressed with Gretchen's credentials -- Mommy, how big is the New York Times Best Seller List? -- and putting a face to why Mommy blogs. And the boys made the best of the trip by flirting with the women at the next table at Jackson Hole, riding the escalators at Barnes & Nobles bookstore at 86th & Lex where the book signing took place, oohing and ahhing over the NYC skyscrapers, and culminating with actually seeing the World's Fair Globe and Terrace on the Park... 2 famous landmarks from one of their favorite movies, Men In Black. (Come on, what's so bad about MIB if you consider I had my 4-year-olds out in NYC at 9pm on a school night?)

[5] And, finally I'm just grateful for the opportunity to focus on my happiness. To do so is a luxury I recognize and do not take for granted. It takes a free moment to breathe, to think and to act in favor of pursuing one's happiness. I'm happy to be able to tie a few of those moments together and hopeful I'll be able to continue to do so...

Thanks Gretchen. You made my night and raised my happiness set-point!

Wednesday, January 6, 2010

Special Exposure Wednesday - Cliches With a Twist

Where there's a will, there's a way...
but not necessarily a cup!


You can lead a boy to water,
but you can't make him drink... from a cup!

For more Special Exposure Wednesdays visit 5 Minutes for Special Needs!

Random Funny Thoughts -- Holiday Packages: Is that Perishable?

OK, I have to share another one of those dark humor situations with you. Actually, more of a funny memory that came rushing back to me this holiday season...

As I stood in line at the Post Office waiting for my turn to buy a multitude of stamps to mail my holiday cards and letter -- those of you on my list know it didn't actually happen....yet -- I over heard the repetitive script of the post master as customer after customer placed their boxes on the counter for shipment. The question:

Is there anything perishable in the box?

Everyone answers no and the transaction proceeds and the recipient eventually gets his goods. BUT, I was reminded of one such transaction that did not start nor end in the expected manner.

When I lived in Kansas City, one of the guys that worked for me in Sprint PCS' marketing technology group was a very unique and out-of-the-box problem-solver named Mark. Like so many of us, Mark relocated to Kansas City to help launch Sprint's PCS company in 1996. Like me, Mark brought his beloved pet cat to KCMO with him. According to Mark, "Scruff" was 22 years old when he moved. Needless to say, we did NOT believe that Mark had the cat's age right... That is, we did NOT believe until we cat-sat for Scruff one weekend while Mark was away. Honest to God, that cat was probably closer to 122 years old... in PEOPLE years. Scruff was straight out of Stephen King's Pet Cemetery. Scary did NOT do that cat justice... nor did his name... though "Scruff" was as close to an accurate descriptor as you could get short of naming him Corpse. If I can get Mark to provide me an actual picture of Scruff, I will update this post. In the meantime, the best visual I can give you is this shot of "Bill the Cat" from the old Bloom County newspaper comic... plus 20 years.

So here's the sad tail: Oops, I mean tale: Scruff dies...early in the week... in Kansas City. But Mark, being an OHIO boy does not want Scruff's final resting place to be in KC. He wants Scruff to be buried in his childhood backyard, back in OHi where they spent most of their lives growing up together. Unfortunately, for Mark (and for Scruff) in the true spirit of start-up companies, Sprint PCS pretty much owns us and all of our time as we approach the launch date. There's just no way that Mark can take off from work to drive his beloved cat home to his final resting ground until the weekend. So he hatches this brilliant plan (Mark, not Scruff... Scruff was hatching nothing but angel-wings at this point). Mark packs Scruff tightly into plastic. Buys a big chunk of dry ice and packs the decrepit remains of his beloved pet into a Fed Ex box for overnight delivery to his dear old mum in Ohio for burial. [Are you laughing yet? I was already about crying at this point in the story.]

But, the saga continues...

Mark takes the box down to the Post Office and gets in line. He steps up to the counter on cue and the Post Master asks the requisite question... "Is there anything perishable in the box?" I wonder, at that moment, what went through Mark's head. How does one answer that question? I mean, the cat's already perished so technically it's not a lie when he finally responds in the negative. Of course, Mark also knows well that it is illegal to ship remains and to ship dry ice... but what's a boy to do?

Alas, the tale/tail does not end here, folks.

Two days later, Mark calls home to confirm that his cat has arrived safe and sound only to find that no package was delivered. WHAT? Panicked, Mark tracks Scruff's package and finds out that he's been misdirected to a warehouse in another state between Missouri and Ohio. Poor Scruff's lost in the system. Mark, worried that Scruff's final resting ground may be a warehouse shelf in Oshkosh, Wisconsin -- or maybe he was worried that when the ice melts and the body starts to smell they might catch onto the crime. So, he jumps in his car on Friday afternoon and races off to track down his cat's hopefully-still-cold body.

And, the happy ending: He successfully locates the warehouse; Talks his way in to search for the package and locates dear Scruff on a back shelf; He reclaims his package, never letting on about it's critical and illegal contents.... Then Mark drives the remaining hundreds of miles left to his journey. Finally putting poor Scruff to rest in his own backyard.

True Story!

Saturday, January 2, 2010

Down Syndrome Awareness -- The Dreaded "R" Word

Living in the melting pot that is New York's metropolitan area, I'm exposed daily to people of different cultures, races, religions and abilities. As such, I began to believe that politically correct language was simply a byproduct of this somewhat unique integrated environment. I had JUST commented to the Sarge the other day that I have not actually heard the dreaded "R" word used in any level of conversation in a very long time. Murphy's Law dictates that I would suddenly hear it used in short order... and since I live a very Murphy's Law life, so it was.

On New Year's Day I opened Facebook to wish my FB friends and family a Happy New Year when someone's updated status shocked me out of my delusional world and into reality. An acquaintance unknowingly let that slur rip... in WRITING, on FACEBOOK for all the world to see. I'm not an easy person to shock. I do believe I've seen and heard enough in my lifetime to have blunted any shock effect for the most part. But this sort of caught me off-guard... I guess I'd let my guard down.

The FB reference was made regarding a trip to the supermarket where the grocery baggers who put only 2 items in each bag must be "retarded".


Not only am I certain that the instructions for all employees at my supermarket is to pack lightly lest a customer get frustrated or break open a too-heavily-packed bag, but, to my utmost approval, there are also folks with intellectual and/or physical disabilities employed there. Her comment struck me as tantamount to standing in front of an African American and outright calling them the "N" word. I would no sooner use that word than I would the "R" word in any form of conversation with anyone.

But what to do? How to address this? You know I just can't let it go. It's another opportunity for me to clear a more peaceful -- less hurtful -- path for my boys and for others who may be less able or less inclined to stand up for themselves. If the speaker meant no harm but rather spoke out of ignorance with regards to the disparaging use and meaning of the word, then public recourse would embarrass her... My intent was not to embarrass but to educate. So....

I opted for a private message outlining the current movement to do away with the use of the "R"word since it's meaning has come to be derogatory for individuals whose intelligence may not jibe with society's acceptable measures of intellectual ability... never mind that it's also extraordinary hurtful for their loved ones as well. It was an awkward message to write because this is not someone with whom I am well acquainted and because the comment was not specifically directed to me but, in general, to any of us out there in FB land. And, oddly, she is someone I met in the special education arena. Someone who knows my children have Down syndrome. And someone whose own child has a language delay. My message was kind but succinct. Still, I'm not sure I'll ever hear back from her. I'm not sure that she won't be offended by my privately pointing out her socially unacceptable gaff. But, I hope and pray that she thinks twice before using the term again.

Lisa at Finnian's Journey has also been writing on this topic recently having encountered a well-respected professional in the education arena who used the "R" word excessively and inappropriately in conversation with her and her husband. She wrote what I think is a brilliant synopsis of the term's history and its appropriate versus inappropriate forms and use. With her permission, I've reprinted an excerpt here to help others better understand our -- mine, Lisa's and other parent's of children with special needs -- point of view:


"Regarding the terms "retarded" and "retard":

"Retarded" does have a clinical context. It originated as a medical diagnosis, and "mentally retarded" is still appropriately used in that manner, although it is falling out of favor, simply because over the years it has evolved into a general insult used will-nilly. It's sort of lost its original clinical meaning and is now widely used to disparage people. These days, the terms "developmentally delayed," intellectual disability," and "cognitive impairment" are more appreciated by family members and loved one of persons who have such a diagnoses. however, the terms "retarded" and "mentally retarded" technically still have appropriate places in a clinical context.

"Retard" as a noun -- as in, referring to a person as "a retard" -- has never had an appropriate context. It originated as a slur, and it remains a slur. It's a hate word. just like "nigger," "dyke," "faggot," "spic," and the like, it is word that disparages, demoralizes, dehumanizes, marginalizes, and just plain hurts. There is no proper way to use it."


Thanks Lisa for putting it in writing so well. I think I'll just send/say that the next time I encounter the word... which, hopefully, won't be for another long while!

Words can and do hurt. Please be conscientious and choose your words carefully. You never know who you're talking to and how such an outdated and inappropriate descriptor will be received. I am not one of those people waiting to be insulted... but I know and feel deeply the demeaning result of an insult when I hear one.

Friday, January 1, 2010

Another New Year!

Yes, it's a new year. A chance to begin again. In fact, this is just another day. And we get this opportunity every day of every year. Yes, today is the first day of 2010 and the first day of the rest of our lives. A chance to start anew. To begin again.

I'd sincerely like to make some changes in my life and the way I live it this year. Small but significant changes. And I know that if I screw it up today... tomorrow is another day. And so it is for each and every day... for each and every one of us.

Good luck to me and to us... and good health and happiness to all of you.

Wishing each of you a heartfelt happy New Year. Thank you all for listening, for following, for bothering to read what I have to say. I am more grateful than I can express. More thankful than you will ever know!

xo maggie