Monday, June 29, 2009

Down Syndrome Awareness -- "Back to School" Grass Roots Advocacy for All People with Down Syndrome - Part II

Getting Your Foot In the Door and Growing It

Our Early Intervention Social Worker opened the door for us. Ellen -- also known as Professor Paige -- who doubles as an adjunct Professor at Nassau Community College scheduled me, the boys and my old soul to meet and speak with her Psychology for Exceptional Children Class about our life experience including what it's like to have children or a sibling with Down syndrome and how Early Intervention fits into and affects our lives and relationships. The following semester, Ellen scheduled us to speak with her students again as well as extending an invitation to another Psychology class to join in on our unscripted and personal chat sessions. The students listened to me talk about our daily lives, our hopes and dreams, our victories and our difficulties. The conversation was not scripted but was largely directed by impromptu questions asked by students who, all the while, were playing and conversing with the boys and Olivia as well. Many students had never actually met someone with Down syndrome before meeting Brian and Michael. Some were somewhat familiar with it because an uncle, aunt or older family member had it. And there was, occasionally, an enlightened student that had a younger sibling with Down syndrome who was growing up with all the advantages that modern developmental science offers children with special needs today. For most though, all they knew of Down syndrome prior to our visit was what they'd heard from their various professors (not always enlightened, though Professor Paige surely is) and what they'd read in text books, which are predominantly still written from a historical standpoint as opposed to the down syndrome of today... significantly changed with the advent of Early Intervention.

Invariably, the students openly expressed that Brian and Michael "seem like normal todders" to which Professor Paige replied, "They are not LIKE normal toddlers! They ARE normal toddlers. They just happen to have Down syndrome." Yes, Down syndrome impacts their lives but they could easily see that it does not change the fact that Brian and Michael are two little boys who play and grow and learn. I dare say, the experience had a positive and mind-changing affect on every student we met with. This was confirmed when another professor at the same college inquired when she overheard some of her students talking amongst themselves about the impact our visit had on them. As luck would have it, that professor had a child with special needs. Though she did not know us, she knew her child's special education teacher treated identical twins with Down syndrome so she mentioned it to her. It so happens that her special ed teacher is also ours! And, she called excitedly to tell me that the students told their professor that meeting Brian and Michael had been an extraordinary experience that they will NEVER forget!

I KNOW this is true. It is why I chose this venue to pursue my advocacy efforts on behalf of children with Down syndrome. You see, I had such an experience many many years ago! 27 years ago to be exact! I sat in a college classroom just like theirs studying Behavioral Psychology. Interestingly, I cannot recall the professor's name but I will never forget the name of his adopted son... Benjamin. Nor the day I met Benjamin when his Dad brought him to class, as a guest one day, to help demonstrate the extraordinary possiblities Behavior Modification techniques brought to the lives of people like his son. Benjamin had autism. And, he made noble attempts with some success to interact with us. He was, perhaps, 9 years old and we were inept 19-year-olds, students who'd barely left the nest at that point. I am, beyond a doubt, still today touched by the extraordinary experience of meeting Benjamin. Putting a face, a child, a person, to what I thought of then as a scary diagnosis.

The boys' speech therapist also happened to be a college professor at another local college, Adelphi University. After hearing of our visits, she too scheduled us to come and speak with her speech-language classes about the Early Intervention experience from the family's point of view and about the impact each therapist has on the family... Each therapist is not only treating the child/client but, in fact, they are treating the whole family. While their therapeutic actions are meant to be repeated by the family members to help foster development, all of their beliefs, hopes, words and actions are also being ingrained into each family's mindset as well.

Our visits were rewarding for the students as well as for me and my family. By exposing these students -- the future therapists and special educators -- to Brian and Michael I knew we were influencing their beliefs about what Down syndrome is and is not. And, changing their view of what a person with Down syndrome is and is not... and what such a person could grow to be with their help and support! As such, I decided to expand my circle of influence to include more college students... the future therapists and educators of children with special needs.... The future neighbors, parents, aunts, uncles and friends of people with Down syndrome.

I happen to live in a very congested area of the country so there are many local colleges that are within more-than-reasonable round-trip travel distance for me and my children without totally disrupting our therapy and education schedules. I googled the name of each of these colleges and perused the degree offerings and departments. I finally settled on the following departments within each school: Psychology, for access to the future therapists and social workers; Education/Special Education, where I could influence the future teachers of both general and special education; Speech/Language, to ensure the future speech and hearing teachers would hear my spiel and not prejudge children like mine; and Nursing, so that the medical profession could first see a child with Down syndrome as an individual before seeing them as a diagnosis. Then, for each department selected, within each college, I identified the department chairperson's name, title, address, phone and email address and commited them all to a spreadsheet. Where any critical information -- especially email address -- was missing, I telephoned to gather the pertinent data needed. Finally, I sent a compelling letter, via email, to each of these individuals with an offer to bring my special family to meet and speak with their students.

NOTE: Next time I'll be sharing the actual e-mail I sent to the college department chairs and, finally, I'll write up and post the general message I carry to the students. (I have key messages and experiences I consistently share but the talk is always unscripted.)

Sunday, June 28, 2009

Down Syndrome Awareness -- "Back to School" Grass Roots Advocacy for All People with Down Syndrome - Part I

Who Are Those Masked Men and How Did They Get Here, you ask? (Bear with me... This is the touchy, feely introduction that precedes the hardcore "How To" section of this post-series on how you can think globally and act locally by implementing "Back to School" Grass Roots Advocacy Efforts on behalf of people with Down syndrome in your own neck of the woods.)

Remember that old commercial, “Don’t hate me because I’m beautiful!”? No, I’m not beautiful, not by a long shot… but my guys are! They’re not only beautiful but they’re also amazing in what they’ve achieved! And, I want everyone to meet them… to see what’s possible.

True, I have been more than doubly blessed with Brian and Michael. First, there are two of them. And, while the midwife’s “there’s the other baby” discovery nearly knocked me off the examining table at 8 weeks gestation, I could not be more pleased -- if not just as dumbfounded after 4 years -- that I have twins. IDENTICAL twins! Blows my mind! Still! And, for those of us living in what some call Holland but I like to refer to as My EDEN, yes, my guys have been blessed with an extra 21st chromosome. And yes again, BOTH of them have Down syndrome… they are genetically identical. Honestly, I wouldn’t have it any other way! Because, as similar to “typical” 4-year-olds as they are, sadly, many in our society will only see and draw attention to their differences. They are identical twins AND they have Down syndrome. Statistically, they are nearly a 1 in a million occurrence. But, as different as they may seem to others, they will always seem more the same to each other. That’s a comfort to me. To know that they will always have each other… without judgment.

When I was a child, I was a desperate tom boy! (ok, I still am, LOL!) But, so was my friend, Lori, who I hung around with from 4th grade pretty much through college (with a brief 2-year sabbatical when she decided to experiment with marijuana and I chose not to). While all the other little girls were flitting around in their dresses being girly girls, we were killy fishing and climbing trees. We had each other and it didn’t matter what the other kids did or said. Not to us! My guys are like that... lucky enough to have such camaraderie and sameness built in. Like the TWO musketeers. All for one and one for all!

Acceptance of their diagnoses of Down syndrome came easily to my husband and me. Honestly, I don’t know why but the fact that they have DS has never stunned us, saddened us or slowed us down… (With maybe the exception of the first 15 seconds after they told us they suspected and were testing for Down syndrome…. when my husband looked as though he’d been punched in the gut and wanted to go hide in a closet somewhere and scream, “NOOOOOO!” He snapped out of it just as quickly saying he saw 2 babies who needed loving, diaping and feeding. But, that’s another story for another time!) The identical twin thing truly knocked us for a loop… Still does! But, not the Down syndrome. Seems we both felt, after the fact (with a little foreshadowing 10 years ago that we didn’t recognize until that very moment), that we were always headed in this direction, to this spot and we were totally meant to be right here where we are. I really can’t explain it better than that.

The boys were born via c-section 8 weeks premature... their choice! Nearly 5 lbs each and breathing on their own (I'm lucky they didn't do those last 8 growth-weeks). Healthy. No heart problems. No feeding problems (latched on and nursed immediately). After 2- and 6-week stays in the Mercy Medical Center NICU to ensure Brian’s and Michael’s internal temperature gauges were operating optimally, and, for Michael, to come through a near fatal tangle with NEC (triggered by a hospital-borne C-dificil infection) with flying colors and literally NO complications -- they came home to take their rightful places in our family. At -4-days-old we began Early Intervention services at home. Anyone with a child with DS knows this drill… starting with evaluations that result in ever-increasing levels of in-home services in OT, PT, speech and special education along with the assigned case worker and family social worker. Being in our home as often as they were, the therapists quickly became an integral part of our family life. They were there at wake up time, through all 3 meals, at naptime and before bedtime... They were ever present! They’ve certainly seen me at my worst – still in pjs, unshowered, hair unkempt and bare faced (read: no make up) -- far more often than at my best. (Heck, I’m not even sure what that looks like anymore!) And, thankfully I’ve managed to never become the subject of one of their stories about accidentally catching a parent in the buff because they were unaware a therapist was afoot. (Honestly, I’m not sure how something like that could happen but…) With two children with special needs and the revolving door aptly (if not literally) installed in our home, we had countless numbers of professionals in and out all day long, nearly every day of the week. Conversations ranged from issues specific to my children to generalized information about OT, PT, speech, special education and Down syndrome. Every so often, someone would come out with a phrase or statement about Down syndrome that I felt indicated a lack of understanding about the boys’ diagnoses and/or their abilities, or potential to achieve a particular task or milestone... Or worse, a comment that I found outright insulting. Being me, I quickly called attention to and corrected these faux pas both to keep my family from suffering the mal effects of hearing and maybe believing such slanted/prejudiced terms or concepts in reference to our beautiful boys as much as to educate the mis-speaker to a more enlightened and accurate way of thinking.

It was our Family Social Worker that first recognized this, my evolving mission, while we chatted during one of our then-weekly sessions. She questioned why I chose to continue to work with a person who obviously had limiting beliefs about my children. I explained that the statements were NOT about MY children but rather they were the generalized, misinformed thoughts of a -- not uneducated but rather -- wrongly educated person regarding the affects of Down syndrome on some all-encompassing, representative individual. I explained that, for my family, a good therapist -- someone who worked well with the boys, who the boys liked and who, most importantly, got results – was a rare find! I explained that such a person misspeaking in MY home was an opportunity for me to re-educate them about the affects of DS on the individuals that are my sons… which is different from the affects it has on every other individual with Down syndrome. An opportunity to explain the widely varying impact DS MAY have on every individual born with that extra 21st chromosomal material. To explain about the fallibility of IQ testing. About what is possible versus what the stereotypes and generalizations would have me believe will never happen… Things I not only believe but I KNOW will happen here in my home, for my boys! Such misspeaking in someone else’s home where, perhaps, the mother might not be as iron-willed or forward as I am, could do GREAT damage to that other family’s beliefs about what their child can achieve, ultimately negatively affecting that child’s development! I certainly didn’t want that to happen! And, I felt strongly that the comments were not malicious but based on ignorance – as most of the stupid comments I hear with regards to Down syndrome are! As Brian’s and Michael’s mother, I saw this as just the beginning of a lifelong re-education of the public… just a part of my job as I worked to carve out peaceful paths and foster independent lives for my beautiful children who also happen to have Down syndrome.

As an adjunct Psychology professor at Nassau Community College, one of many local colleges in our area, our family social worker was addressing many of these very issues and dispelling inappropriate myths about Down syndrome with her students. As such, she suggested that perhaps I’d like to bring the boys and my old soul in to talk with her class about our experience, our reality. To introduce them to Brian and Michael and to re-educate them on what is possible… And, so began my “Back to School” Grass Roots Advocacy efforts on behalf of all INDIVIDUALS with Down syndrome.

Please watch for more detailed information on how I continue to grow my grass roots advocacy efforts by going “Back to School” to the local colleges to meet and speak with students who are planning careers working with children like mine, children with Down syndrome, as well as children with other special needs. Students who hold the future of so many people with special needs in their hands… through their actions, words and beliefs. Actions, words and beliefs I hope to influence. And, a future we can all influence.

Thursday, June 25, 2009


The end of the school year always wreaks havoc on my peace of mind. Too many to do's and not enough time to do them. So, with all the stress I've been feeling, with little or no time to vent or let off a little steam, by the time Thursday rolls around again, I'm feeling hard pressed not thankful. But, focusing on what I've got [to be thankful for] seems the perfect remedy to relieve the stress, chase the blues, and vanquish the blahs. So, here goes:

[1] Thank God there's white vinegar in the house. Yup, forgot to put sunscreen on the old soul for her pool party this afternoon. Can't find the aloe vera lotion so I had to send Sarg to CVS to go buy some more! First sunburn of her short 7 years. Sure I told her to wear the t-shirt top bathing suit so she wouldn't get burned... she didn't! But, I'm the adult and I should have put the sunscreen on her. I remembered as I drove away -- spying the clouds, considering the last 14 days of non-stop rain and thinking she'd be ok -- and I'm kicking myself for not going back. I'm paying now. Unfortunately, so is she! (BTW - It's not a horrible sunburn compared to the 1" blistering burns I got over and over again as a kid... She's not a lobster... just uncomfortably pink... all over! But we're supposed to know better now... Right? Just some more fodder for my I'm-a-bad-mother guilt trip!)

[2] Thank God for the friends who encourage me just by being on the other end of the phone. I don't even have to say anything... Just knowing there's a friend within earshot whose been there/done that is enough. Thanks Nicole!

[3] I'm not sure if I'll care about turning 50 (which is 4 years away yet). But, I'm glad that I'm not 50 right now. I'm not where I want to be physically at 46. And, I think if I were here and 50, I'd feel worse. Last August, I was hoping to be 40 lbs less for the camping trip this August (not gonna happen). Maybe I can lose 10 before then! But I guess I'll just have to shoot for hitting 50 with 40 lbs less force via a healthier life style. How's that for setting short- and long-term goals?

[4] I am sooooo glad that the old soul and the boys have no school for the next 10 days. That means Mommy has 10 commuting-free days too! We're not going anywhere that I can think of [yet, though I desperately WANT to go somewhere] and we've got pets that we love love love for 360 days of the year right up until I feel like jumping in the car with the kids for an impromptu road trip [like I do now] and suddenly realize I can't do that because there's nobody to take care of the pets in my absence. Oh well. It'll be a good 10 days anyway! We're going to vacation at home! Hit the local attractions: Statue of Liberty, Bronx Zoo, USS Intrepid Air and Sea Museum, the Beach, Ice Cream shop, take a day cruise/boat ride, bike ride in a new park (got one in mind that overlooks the LI Sound), go north (to LI's Gold Coast), go east (to the end - aka. Montauk's fishing villages), etc. Should be fun... Maybe even more fun than actually going away because we all get to come home and get a good night's sleep in our own comfy beds every night and I don't even have to pack a suitcase... Yeah!

[5] I'm thankful I have the luxury of deciding whether or not and when my boys annoying little health issues should be addressed via surgery as necessary. Yes, we're considering surgery for another issue... but it's not a MAJOR issue. Actually, their health issues -- while important -- are, thankfully, not life threatening. More quality of life stuff and improved functioning kind of stuff. And, I am so very thankful for this and their general good health.

SPECIAL THANKS: I'm grateful for this beat up old roof over my head. Grateful that, with all this rain, it didn't leak (neither did the basement). And, grateful that -- unlike the man I pointed out to my old soul the other day who's living out of a shopping cart under the train trestle, all his possessions in plastic bags to keep them dry -- we have a home! And, we are incredibly lucky that we do!

Wednesday, June 24, 2009

Special Exposure Wednesday

Brian's ready for bed but Mommy's still blogging!

Tuesday, June 23, 2009

Down Syndrome Awareness -- Your 6th Sense

I recently read this quote somewhere and it just stuck in my head.

"The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift."

Albert Einstein

More than fifteen years ago, an old friend of mine held her then 6-month-old baby in her arms and knew there was something different about him. It took three years from that point before her son was diagnosed with Autism. Her pediatrician kept telling her not to worry. Everything was fine. But, she continued to tell every one that would listen, and many who did not listen -- at least not early on -- that something was not the same with this baby as it was with her two older children. He was her third... and she just KNEW.

I am a big believer in the intuitive mind. I often suggest that my fellow mothers/friends follow their gut when they're worried about something. I think the old television show had it wrong.... I think "Mother knows best", at least when it comes to her children and their development. Besides, there's certainly no harm in following the axiom, "when in doubt, check it out".

We have all had those 6th sense moments when we questioned, pursued and had our suspicions confirmed. Oncoming illness, fear of injury, avoidance of disaster, postponement of an event... until it feels right. As a SCUBA Dive Master, our mantra to students was, "when in doubt, sit it out" and "live to dive another day". God knows SCUBA diving can be a dangerous and even fatal sport if you're not feeling good and/or diving in optimal conditions. Childhood can be a dangerous sport too. For the safety of your children, if it doesn't feel right, why risk it? When Brian and Michael had their tonsillectomies/adenoidectomies, on day 4, I had to decide for myself whether to bring them in to the ER for rehydration or "wait and see". I was on the fence, the MD said it was up to me, my husband stood looking at me stunned that I honestly didn't know what to do. Finally, something told me to go... To err on the side of caution. As it turns out, both boys benefited from the rehydration -- one was dehydrated and the other was borderline. But, it was "the other", borderline-dehydrated guy -- Brian -- who, to our surprise, was diagnosed with pneumonia while we were there and ended up hospitalized for 3 days. Good thing I followed my gut!

Pursue, avoid, postpone until it feels right. As mothers, we need to heed whatever is dictated by that gut feeling -- like the one my friend had -- that tells us something is just not quite as it should be. Our 6th sense fields all kinds of stimulus that our conscious minds may ignore.

Albert Einstein might not have been a mother, but he sure was smart! So, go with your gut. Follow up on your intuition. And, honor the gift. It's there for a reason and early detection means early intervention means the best outcome possible in every scenario.

UPCOMING: I'm putting together instructions for a grass roots advocacy effort that each of us can easily pursue if/as we choose. It's a great way to think globally and act locally. Look for my Down Syndrome Awareness Series on "Back To School - Grass Roots Advocacy".

Friday, June 19, 2009

Honest Scrap Award & Ceremony

Honest Scrap Award! I always wondered how people got all those award buttons on their blogs. Now I know.

Many thanks to Monica Crumley who writes Monkey Musings at for reading my scribblings and honoring me with the "Honest Scrap" award. At first glance I thought, perhaps, it was given in error as I don't scrapbook (not in public anyway) though many bloggers I know do. Then I came to realize that this award is not necessarily about scrapbooking. If you look at the definition of the word scrap, it means "fragment". God knows each of us puts real and honest fragments of our lives into our blogging. And, while we each blog for diverse reasons, the one thing we all have in common is our affinity and appreciation for the written word. I guess, that's what this award is all about.... Sharing honest fragments of our lives such that they touch other people. So honored by Monica, in turn, I am bound by the rules of acceptance as follows:

1) Say thanks and give a link to the presenter of the award
Thanks again, Monica at

2) Share "ten honest things" about myself.
OK, you want honesty, here goes:

  1. I don't do enough for and with my boys now that they're in full-time preschool. I know a lot of us Moms of children with special needs feel this way but I secretly think I'm the only one really not doing enough... That is, when they get home after being gone for 8 hours Monday through Friday, mostly I just let them be kids without special needs. Often I think I should be utilizing that little slice of time more wisely (instead of blogging, for instance), for more lessons, more structure, more repetition of needed skills, more routine. But, I don't! I desperately want them to be kids first.... But, I could be wrong and that's where the real guilt trip and conflict come in for me. This is hard, isn't it?
  2. I miss doing some of the fun things I did before I had kids... like SCUBA diving, kayaking, running, spontaneous travel and playing 2-man beach volley ball... Heck, sometimes I even miss working in corporate America with all the built in rewards and recognition (don't get much of that as a SAHM). I know I'll get back to at least some of these things at some point (and I might be sorry when I do). But, I miss them a little bit now. It's OK, you don't have to fix it by suggesting I get a baby sitter and go do these things... I CHOOSE every day to temporarily give these and other activities up in favor of focusing my attention on my children for now. They are only young once and they need it... and I will live to dive another day. I just hope I'm not 80 before that day comes, LOL. Thankfully, I am starting to add some of my old favorite activities back into my life little by little as the kids get older. But, I still miss the freedom of doing these things when the tide is right rather than waiting to indulge myself until the kids are at school or in bed. Note: I'm just being honest here for the Honest Blogger Award!
  3. I think my 3 kids -- 2 of whom happen to have been blessed with an extra 21st chromosome -- are absolutely phenomenal and I want everyone in the whole world to meet them so they can be changed forever for the better, the way I have been and everyone else who meets them. Of course, I'm their mom so I'm supposed to feel that way. And, I certainly hope you all feel that way about your kids. But, I secretly think it's more than that for me (LOL, I do)! So, you're all invited to my house to meet my boys and my old soul and see what I mean.
  4. My outside doesn't match my inside. That is, my physical self is not compatible with my psychological self. I had always been a very physically active person and the medically-prescribed modified-bed rest during the boys' pregnancy put an end to all that. Since starting my family 8 years ago, I've gained 30 lbs and I hate it hate it hate it. But, as the kids get older and a bit more independent, I've begun to work in more activity which means it's just a matter of time... It's a balancing act I've not perfected yet. It'll come (I hope).
  5. I am a very spiritual person with unshakable faith in God but I am not religious despite being raised Roman Catholic. And, my God is a nondenominational, multi-religion conglomerate God who is all-loving and all-forgiving. I don't go in for any of that God-fearin', hell-threatening stuff.
  6. I'm a rule follower! I believe that to maintain a civilized society we need to follow the rules we, effectively, put in place in this part of the world. I'm talking about the laws, rules and guidelines of our society! Of course, claiming I'm a rule follower flies in the face of #5 above because I don't follow many of the "rules" the Catholic church set down (not talking about the 10 Commandments here). I don't avoid eating meat on Fridays and I don't spend an hour in church each week... but I do wear my seat belt and when I have to talk on the phone when driving, I use a hands-free gadget to do so. [Having written this it seems to me that maybe the former "rules" are meant to address the well-being of the spirit and the latter address the well being of the flesh. Interesting thought... I'll have to over analyze that and get back to you.] I also believe in people suffering the consequences of their behavior which speaks to both sides, the flesh and the spirit. No, I don't follow the rules because I'm afraid of getting caught and being punished (the flesh). I follow them because I feel bad when I don't follow them (the spirit).
  7. That said, my spirit is willing but, sometimes, my flesh is weak! I am only human!
  8. My husband calls me "the idea guy" because I think WAAAY outside of the box to come up with creative solutions for the problems I encounter in every aspect of my life. That is, I tend to over analyze and go way beyond "normal" thinking to solve the problem at hand. It's like creative problem solving on steroids and I don't mind breaking social mores or inane societal rules when I'm operating outside the box (the box being the normal rules and solutions, I guess)... as long as the outcome benefits someone near and dear to me, or someone in need, without hurting anyone else in the process. That last part's key! While this may contradict # 6 above -- rule follower -- I do come up with some seriously creative ways to solve otherwise seemingly insurmountable problems. It works for me.
  9. I think my Buddhist leanings are getting in the way of getting things done around this old house. I fear I may have recently violated the "First, do no harm" and "that worm could be some body's mother" (we're talking old souls here) teachings. Seriously! In an attempt to create a privacy hedge, I have been trying to commit 20 donated ( Rose of Sharon bushes/trees to the ground beside my barn. Unfortunately, I spend more time saving all of God's creatures than getting trees in the ground. So far, I've rescued literally countless worms and relocated at least 15 slugs, 6 snails and more than a few BIG (I'm talking quarter-sized bodies), hairy, black mama spiders with eggs. Collective awwww? No? But, only 5 trees made it to their eternal resting places. Not sufficient progress but I can't just ignore all of these newly evicted creatures in the process. What to do? What to do?
  10. I am a walking contradiction -- as evidenced by the honest little tidbits I've shared above -- with a few wild curve balls thrown in for good measure (read: might be dipping a toe in the crazy gene pool)... But, I am absolutely loving my life!

BONUS ROUND: Talking too much translates to writing too much! Guilty!

3) Present this award to 7 others whose blogs I find brilliant in content and/or design, or those who have encouraged me.

  1. Finnian's Journey at parenting (including a child with Down syndrome), acceptance and advocacy and life in general

  2. Hanzely Clan News at parenting (including identical twins with a dual diagnosis of Down syndrome and autism), acceptance and advocacy and life in general

  3. Beneath the Wings at parenting (including a child with Down syndrome), acceptance and advocacy and life in general

  4. Mothering By the Seat of My Pants at parenting (including a child with Down syndrome), acceptance and advocacy and life in general

  5. Bubble Gum on My Shoe at parenting (including a child on the autistic spectrum), acceptance and advocacy and life in general

  6. White Trash Mom at laugh-out-loud funny parenting and life in general

  7. The Happiness Project at thought provoking, helps me stay focused on my own happiness
4) Tell those 7 people that they've been awarded HONEST SCRAP AWARD and inform them of these guidelines in receiving it.

Hey all you bloggers, here I come! When you've linked back here to claim your award and check out the rules [that I so love to follow], copy and paste it back to your posting place -- if you feel like displaying your trophy and carrying forward the good will -- update it with your own answers and publish away...

Thanks again, Monica! Now I have one of those cool buttons on my blog too!

Thursday, June 18, 2009


I honestly CAN'T say I'm thankful for all this rain anymore. I don't want to say "enough" just in case someone with the power to change things is listening and we go dry dry dry! But, since He's always listening... Can you just squeeze in a few dry and sunny ones for us here and there please... So, what am I thankful for these days?

[1] I AM very thankful that after 4 postponements of the old soul's FUN DAY at school, they finally squeezed it in and we all got to enjoy the activities OUTSIDE on the ONE day it didn't rain in more than a week! Despite some overcast skies, the program went off without a hitch and all the kids got their chance to shine (even if the sun didn't). Liv's best events were the Bucket Brigade, the Hula-Hoop Chain, and the Pizza Relay. Yeah Liv!

[2] I'm thankful there are only 3 days left to this school year and that the academics and homework assignments are already a thing of the past... for summer at least! It takes a huge weight off the old soul's shoulders... and mine! This was a very tough year for her as she and her teacher clashed more than a little bit in personality -- Teach is Type A (100mph) and Liv is Type B (5mph) and never the twain shall meet! I've been assured that the powers that be have carefully attended to this personality clash and we will not have a repeat performance for next year based on a purposeful and conscientious selection for her 3rd grade teacher. From what I understand, the 2 words that best describe her assigned 3rd grade teachers' classroom are "peaceful and calm"! I am cautiously optimistic for a better [next] year!

[3] But, even more so... I am Psyched Psyched Psyched for a great summer with the old soul [while the boys take advantage of their extended school year services]. She and I plan to spend the summer snorkeling the alcoves at the Jones Beach inlet spying on juvenile tropicals that have washed up in the Gulf Stream. We'll be swimming with the fishes -- seahorses, puffers, angels, box fish and more. CAN'T wait. (SCUBA diving is close behind.) We'll also be kayaking, hiking and biking around Long Island, as well as visiting the zoos, aquariums and museums and practicing yoga every day. Oh, it's going to be a GREAT summer! (I'm just sorry the boys can't join us for all this fun but I am thankful there's an academic program available to address their specific developmental needs. Besides, we can do fun things like fairs and the beach on the weekends and they can play hooky for the cool weekday activities they'd be able to enjoy with us ... like the zoo! They're still a tad too young for snorkeling and kayaking.)

[4] I'm thankful I've gotten out to walk in the mornings, even a couple of times, with my sister given all this miserable weather. Certainly not enough and not as much as I'd like to but anything is better than nothing. And, I'm thankful that the running's getting a bit easier on my lungs. Time to increase the distance or speed or something, right?

[5] I'm also grateful that Weight Watchers is not allowed to quit me despite my abandoning the program as often as I do! I swear, I'm going back this week to start anew. The good news is those 8 lbs are still gone. The bad news is it could have been 20 by now had I stayed with the program. But, if I'm still breathing (and I was last time I checked), then I'm still trying. It'll come off.... eventually!

And, a special "Thank You God!" that my family members -- especially my children -- are all healthy. I'm asking for special prayers for 2 children who are in desperate need of some divine intervention: for Marcel (a young baby who mysteriously slipped into a coma ) and for Sean (a teen paralyzed by a freak diving accident). Please remember them in your prayers. And, thank YOU!

Wednesday, June 17, 2009

Special Exposure Wednesday: Deep Thoughts From The "Old Soul"

My Old Soul was practicing writing her bubble letters today, in green of course, and made a big sign with her very own, original deep thought (you remember those from SNL?):

"If There's Nothing You Can Do, Do It!"

There's much wisdom in that statement!

Tuesday, June 16, 2009

BELIEVE - No One Can Know The Limits Of Another

"1500 years ago, they thought the earth was flat. 500 years ago, they knew the earth was the center of the universe, and 15 minutes ago you were sure we were alone on this planet. Imagine what we'll know tomorrow!" In one of Michael's favorite movies, Men In Black (ok, collective gasp that my children watch this movie regularly), these words were spoken by Tommy Lee Jones (Agent K) in an attempt to recruit Will Smith (Agent J) into the Men in Black.

In real life, 50 years ago, our children would have been institutionalized for life. Today, people like Mitchell Levitz hold responsible corporate positions, live independently, publish books and stand as capable advocates for all people with Down syndrome.

Brian and Michael are 4-year-old identical twins who happened to have been blessed with an extra 21st chromosome. Along with me and their older sister, Brian and Michael meet with students at local colleges who are planning careers working with children with special needs, advocating on behalf of all children with Down syndrome. They do this at 4 years of age! Imagine what they'll be doing tomorrow!

Monday, June 15, 2009

Sometimes It's Not About Down Syndrome! Sometimes It's Just About Life!

You know, posting as often as I do about Down syndrome and how it affects our lives can be misleading. You might get the impression that my life revolves around the boys' diagnoses. It soooo doesn't! As a matter of fact, if they didn't wear their diagnoses on their faces, you probably wouldn't notice anything different about my guys versus anyone elses identical, 4-year-old, absolutely adorable and outgoing, did-I-say-identical twins. Yes, they attract A LOT of attention but I don't think it's the DS (not initially anyway). Yes, I spend much of my time chasing them and my old soul down and then riling them back up. It's my job as Mama! And, I would be doing that with or without the DS. The only thing I might not be doing is blogging... Well, that's not true either because I love to write and I love to talk (could you tell?) so this blogging thing is a great outlet for me given the amount of stress we have in our lives. By "we" I mean all of us, these days.

But, just so you know we ARE the "typical" family next door (I'm LOLing out loud as I say that because I realize we are so NOT typical and I can't even begin to explain that to you all except to say it's totally not about the DS). So, here are just a few highlights from the "typical" week I had last week:

1. Our newly adopted (4 mos ago), 2-year-old Miss Molly Boxer tore up a brand new bag of hickory smoked charcoal briquettes that a neighbor gave us (she apparently didn't notice the gas grill) and proceeded to drag hundreds of the briquettes all over the living room. Serves me right for trusting her out of the kennel for the 1 1/2 hours while I chauffeured the kids to school. The shabby-chic, antique, hand-me-down, family heirloom rug from my sister now has a nice charcoal grey hue to it... looking shabbier than ever. Chic? Not so much! Guess it goes with the rest of the house now!

2. Michael was playing ball with said boxer when I heard a teeny tiny voice being drowned out by running water say, "Oh Nooooo. Ball!" I arrived in the bathroom out of breath from the sprint just in time to pry the tennis ball out of the tennis-ball-sized hole at the bottom of the toilet with great effort... just before the potty overflowed.

3. Aforementioned Boxer had 15 minutes to kill while I ran out to pick up Wendy's with the kids. Lest she get bored, she tore up one of the boys' poopy diaps and dragged it ALL OVER the charcoal-hued living room rug. Suffice it to say, I think we invented a new color here. Ugh!

4. Brian found the new 25 lb bag of Meow Mix leaning against the kitchen cabinets and scooped more than half of it out all over the kitchen and hallway floors right after I finished vacuuming. Looked like a Meow Mix sand box in there. And, it was a race against me, the two dogs and the two cats to see who could eat the most Meow Mix before Mommy cleaned it up. Did I mention that Meow Mix doesn't agree with our other, sainted, 13-year-old Chow Chow dog, Bubba? Just something more for me to clean... Hopefully not on that living room rug again!

5. Said Boxer found another free moment (God, remind me... why did I adopt this dog?) and tore open a large box of books someone gave us for the kids. About 15 books lost their covers and most of their pages. My poor old soul was sifting diligently through the wreckage looking for and trying to reorder all the pages she could find from one particular book she loved about a fat cat who had 4 kittens.

6. During this rampage, the holy terror dog also managed to fetch hubby's latest political manifesto book off the top of the tv where he left it (I keep telling him to put his stuff away where it belongs) and did quite a bit of damage to that too. Oddly, this last act of home-soil terrorism ended with Miss Molly sound asleep on grandma's jacket and the boys' sweatpants which she pulled off of the back of the wing chair and couch. This must have taken great effort because I found the very large and heavy wing chair tipped over and dragged halfway down the hallway. Apparently, this final act was an effort to be surrounded by the scents of those she loves. Note that none of MY belongings were in her sleeping pile. Might have something to do with the repeated reprimands for her naughty behavior that she's been subjected to all week. (That's putting it mildly!)

7. I did, however, find one of my shoes -- I'd call it a dress shoe but only because it's not a sneaker or work boot -- inconspicuously hidden in the tall grass of the back yard in the pouring rain -- which is a good thing, because it was washing away the huge bird poop on it. That means, Miss Molly must be in cahoots with the birds now too. I don't know why they would revolt against me though... all I ever did to them was feed them. I'll have to rethink that little kindness (LOL).

So, it was NOT a good week. Lots of stress. But, let me tell you THAT is one LUCKY dog. Lucky she got rescued and lucky I didn't kill her last week. She'll be spending a lot of her "free" time in the kennel going forward until she gets it out of her system.

The moral of the story? I'm STILL standing! What doesn't destroy us WILL make us stronger! That applies to you, me, my children, your children, all of us! Down syndrome is just one aspect of our lives. Just one bright, rainbowy panel in the complex prism that is my life!

Sunday, June 14, 2009

Down Syndrome Awareness -- Gotta Have Its AND How I Used Its!

I was just over at Down Syndrome New Mama ( and she had a great post about what every new mama needs based on her experience. Given we're all different mamas -- new and old -- and we have all different children -- with and without Down syndrome at different stages of development and with different needs and challenges -- I decided that I'd throw in my own $0.02. But, as I commented I realized, once again, that I had more weighty stuff to say than the comment box could bear. So, here I am again, Swiper the Fox, swiping post ideas from other Moms -- Brian would say "Piper no Piping" -- and putting my own unique spin on it.

In my defense, I hope you find my approach and point of view to be a little different given I have twins with Down syndrome, I don't have an endless supply of money (anymore) to purchase all the fancy stuff out there and my Must Haves will certainly be at least slightly different than hers and yours and that Mama's over there too. Personally, I think everyone should go ahead and swipe her post idea, blog on and link up so there's a wealth of information for those truly new mamas of babies who happen to have been blessed with that extra 21st chromosome (aka Down syndrome). Because, the truth is, Down syndrome or not, every child is different and parenthood is NOT a trip to Rome. Every one's trip is different and what works for one may not work for another. So here goes:

For me, a lot of those really early years with "the boys" (LOL, as if 4 years into this isn't still early in the game) was ad-libbing, concocting and/or adapting because much of what was out there, I found, didn't quite work for our specific situation... for my child with Down syndrome, or my TWINS with Down syndrome and/or didn't quite address the particular issue/developmental hiccup or personality of said child/children. And guess what, I'm STILL doing that -- ad-libbing, concocting and adapting -- to get just what I want and just what the boys really need.

Anyway, I'm going to come at this from perhaps a slightly different angle. I'm going to identify situations and then solutions and then mention a product or two that facilitated the process. FOR ME! Note: I won't belabor the "for me" thing too much more but that's just my disclaimer. My way of saying this worked for me. Nothing works for everyone but I hope something here works for at least one or some of you...

Belly time: Yeah, none of my 3 children -- with or without Down syndrome -- liked belly time. And, falling behind those big thick rounded Boppies (I bought one for my daughter and had one handed down to me when I had twins) was frustrating for me and for the boys. Required too many readjustments. So, I tossed aside the Boppy and did a tight roll-up of one of those baby-soft blankies that fit just under their armpits. As they grew, I selected a slightly bigger blanket and refolded it so it was just the right height and thickness for their little armpits, arms and elbows. This way I wasn't restricting them from accidentally testing their rolling mechanism. That is, they'd lean on the blankie and lift up their shaky little heads and then, because everyone knows baby heads are heavier than just about the whole rest of their bodies, they'd sometimes roll to the left or right with that stunned look of surprise on their faces. Over and over again. But, they were lifting and they were rolling. Two really good exercises... experiences... that were possible because of the ever-so-slight incline of an inexpensive rolled up blanket. The Boppy, with it's puffy rounded shape, didn't actually allow them to freely, if not accidentally, roll to the side, push up on their short little hands and arms or move forward if the strength, agility and desire overtook them. The right-sized blankie didn't block them from doing so. Propping to encourage lifting the head while building the body's core muscles is good. So is rolling! So, I was killing these two developmental milestones with one very soft and fluffy stone... so to speak. Mind you, I used the Boppy later and highly recommend it. It just wasn't useful for me early on (not for breastfeeding either... remember, I had two!) I just thought I'd throw out a very inexpensive and developmentally sound alternative.

Visual Stimulation & Motivation: Research shows that babies are intrigued with faces. And, while Mommy's face is the most interesting face of all for them, at least initially if not forever and ever -- my guys are still intent on studying my face, facial expressions, the movement of my eyes and eyebrows and now my mouth for letter formation and language development, etc. -- THEIR own faces are also HUGELY entertaining and developmentally appropriate. So, I bought one of those cheap, lightweight, back-of-the-door, plastic-framed mirrors at Target and angled that lengthwise against the couch on the floor with them propped in front of it on their rolled up blankies. You never saw two kids more motivated to pick up their heads to get a look at their own beautiful little baby faces staring back at them in the mirror. Many an active, heads-up hour was spent in this manner. It also started them scooching... they had to get to that cute little baby over there. I guess I could have saved the $ on the mirror and just faced them toward each other -- being identical twins and all, LOL -- but the guy in the mirror was so good at mimicking and rewarding them with feedback on their own facial and physical movements.

Changing Time: OK, I admit it, I changed my kids on the floor using one of those old fashioned cloth diapers as a changing pad. If you haven't already heard, I have TWINS so I was always watching over my shoulder for what the other guy was doing while I was busy with the first. Personally, I didn't put any of my babies anywhere they could fall from even though I was always holding on. I'd heard too many fell-off-the-changing-table and broke the blah blah blah stories. I live a Murphy's Law kind of life. If it's going to happen, it'll happen to me. (No, this is not pessimism. It's reality! I know we've all heard that from the pessimists we've met, but, look at me! I have identical twins with Down syndrome -- that's a 1:1,000,000 kind of chance thing.) Besides the safety issues, I also found that my abdominal and back muscles were heartily strained after pregnancy (especially after carrying twins and having the c-section but that's another story) so the slight lean over the changing table hurt way more than sitting legs outstretched on the floor with baby in between. Good stretching for mama and totally safe for baby. Both babies! So, what's my product recommendation? Let me tell you, I STILL have about 20 of those old fashioned, mega-padded cloth diapers. THAT'S a product I highly recommend! They sell them cheap in multi-packs and they make great burpy cloths, head rests, diaper changing pads, bed/crib pads, little blankies when you forget that you pulled the real blankie out of the diaper bag to wash it... You name it. And, the best TOY I personally found for keeping their interest during changes is absolutely free and every new mama comes with one.... your FACE! As I said above, developmentally, this is just what they want to see and it's not like you're doing something else at this particular diaper-changing juncture. I had my baby focus on me and my face during changing time by making faces and talking motherese. Yeah, having an interesting toy hanging on the wall might have been cool but I wasn't always near the wall or even in the same place every time, I didn't have the spare change to buy the next new-fangled, short-lived toy and, selfishly, I wanted some of their undivided attention myself. Not that Mommy's face ever got boring for them (still!) but when I needed to keep their busy little hands out of their dirty little diaps, any favorite rattle that makes noise and has bold primary colors and simple geometric designs is visually interesting for them and entertaining (read: distracting) to boot. Works on their grasp, independent use of the limbs, crossing midline, passing an object from one hand to the other, etc. All good fine motor skills. Sometimes the old-fashioned stuff works best. And, finally, instead of the Diaper Genie, I prefer the Diaper Champ. It uses regular kitchen-sized trash bags because I don't know about you but I never got to BabiesRUs often enough nor desired to spend the money to buy the designer Diaper Genie linked refills. With the Diaper Champ, any old kitchen garbage bag will do and, yes, the compartment is sealed so it doesn't smell. I also heard from two seasoned mommies that the Diaper Genie wrapped stuff up so tight that not immediately disposing of the contents bread? breeded? resulted in maggots in the tightly-twisted, Diaper-Genie foul diaps. That was gross enough for me to start dumping our poopy diaps in the regular trash which gets disposed of daily! So, I'm not sure what I'm recommending or if I'm not recommending anything. But, I have a gently used Diaper Champ available... LOL.

Propped Sitting: Here's where I used those two Boppies. That's right TWO at once... for ONE kid. My guys were big for twins (nearly 5 lbs at birth despite being born 8 weeks premature) and by the time they were ready to practice sitting, ONE Boppy was too short and didn't offer sufficient, if any at all, back support. Two Boppies stacked on top of each other gave them soft support further up the trunk of their bodies but not such firm support that they didn't feel the need to engage their own abdominal muscles to steady themselves. They could sit without completely slumping... the way they did with just one Boppy. Caveat: not that you'd leave your child unattended in a sitting position, but just know that the top boppy would occasionally slide off the bottom one. I put it up against the couch to minimize this occurrence. The down side of this was that baby might slump enough sideways or backways to tip over. The upside was that he had a soft landing. So, there you go.

By the way, I heard soooo many parents swear by those Bumble seats to help with early sitting skills and as a booster seat at the table. Again, EVERY child with or without Down syndrome is different so my personal experience was this.... The boys were big and had no eating issues so they were "typical" in size to their peers without Down syndrome but given they were slightly delayed in the sitting skills, by the time they were working on independent sitting they were already too big and chunky-legged for the Bumble. If this doesn't describe your child's physical stature, it may work very well for you. But, if you're looking to get one, check ebay, Craigslist and/or Freecycle before you go to the stores. Most mothers I know who used them say they generally have a short use-life (versus shelf-life) and can be expensive, especially for twins. Moms are always passing these on for a fraction of the original cost.

Sleepy-time Monitoring: Oh all of us mothers, new or otherwise, constantly worry about our babies when they sleep. It's part of the maternal instinct which, I'm told by more seasoned moms (read: moms with teens) never goes away, so resign yourself to never getting a good night's sleep again but don't give up looking for something/anything that helps. Now, I'm not a fan of stereotyping so this next part sort of disagrees with my basic sense of approaching every child as an individual, but I understand that sleep apnea is statistically more common in children with Down syndrome because of the typically smaller oral cavity and normal-sized or enlarged tonsils/adenoids (in that small mouth), coupled with the potential for lower muscle tone (which could be the result of Down syndrome and/or just plain old genetics). In a small mouth with low muscle tone, crowded with big tonsils, sleep apnea is just a tad more likely. In any of us, being asleep and laying on our backs relaxes the oral motor muscles in the back of the throat such that the tongue can drop back, touch the big tonsils and obstruct the airway. Happened to my hubby every night until he got his CPAP machine for sleep apnea. (BTW - it also runs in families -- DS or not -- and can also be related to body type too... So it's not just a DS thing.) Obstructive Sleep Apnea (OSA) is essentially repetitive and disruptive stop-breathing episodes that occur throughout the night. And, it's a scary experience for every mother. My guys had Obstructive Sleep Apnea and recently underwent successful intracapsular tonsillectomies/adenoidectomies to address/correct the situation ( But, before this recent surgical adventure, I sure do wish I'd had an audio/video monitor when the boys were babies for the breathing reason along with all the other reasons we moms want to see what's going on. "Are they trapped in the bed rail? Did they fall out of the crib? Are they on top of each other? Under the blankets? Face down in the bed? Rolled over and can't get up?" Yes, we ALL fear those things far too often. But, you know what? My Fisher Price Lights and Sounds baby monitor that I've used since my old soul was a baby worked for all this sleepy time monitoring because the sound sensitivity was incredible. I can hear them move. I can hear them stir. I can hear them breathing! It's portable! It's cheap! AND it's still doing double time in their bedroom every single day. Nearly 3,000 days of monitoring and it's STILL working wonderfully! There's something to be said for an inexpensive, overused and abused monitor working for more than 7 years despite being tossed about our lives and house.

Yes, I think I would have loved a video monitor for when they were babies and even now. Black and white OR color... In truth, it doesn't really matter if you can see that baby in full color but, I guess, the full-color would be nice if you have the money. I didn't! Don't! BUT, if I did, for ME, I'd go with the kind that has a portable hand-carried, clip-on-your-belt-and-go (as in go to the far reaches of the backyard or garage and still produce a clear I-can-see-his-chest-rise-and-fall-with-every-breath image) screen with the flexibility of hooking up to my television on the rare occasion that I was stationary (folding laundry or blogging) during nap time. That would be the best solution for ME. After all, I wouldn't want to be tied down to spending nap time in one room watching a cumbersome video monitor, crowding my already cluttered counter top as I run frantic around the house trying to get all the unattended chores attended to during that one potentially short little nap. Plus, that expensive video monitor better have a movable camera with a wide-angle setting so it can double as a kid-tender for the playroom as the boys get a bit older. Then I could let them play in another room without eyes-on direct supervision (they're 4 now) to see how they interact independent of adult supervision. Heck, as long as I'm spending the money(and dreaming), I might even look for one with an indoor/outdoor camera so that, ultimately, I could monitor backyard activities or the swimming pool to make sure no one was ever in it without up-close-and-personal, hands-on adult supervision. But, now I'm talking about an advanced-function, more expensive audio/visual monitoring system which is unnecessary for babies... if not a nice luxury. The truth is, when they're babies we just want and need to monitor their sleep. And, an inexpensive high-quality-audio baby monitor -- so you can hear their breathing -- does the trick just fine!

BED SAFETY: My boys did a crib for about 6 weeks and then were too big for it together and wouldn't sleep apart and and and. They slept in the big king-sized bed with bed rails. Mommy on one side, Daddy on the other. A lot of experts and many mommies would say this is taboo. And, just as many, if not more do it. So, I'm going to be honest and tell you I did. Do! And, I still use the bed rails on the bed and when the boys fall asleep on the couches, there too. I have 5 of the same kind after throwing away two that didn't work/broke on us. They are Safety 1st - white plastic, tall, with blue and green trim and mesh netting. Not sure if they sell them anymore but these were the only ones that worked for us. For the height of our bed, couch, boys etc. this particular model fit the bill. Might be a trial and error thing. Might just be the perfect, versatile product. And, safety gate will travel, as it's foldable and compact.

Containment: These big giant interlocking, make 'em as big or as small as you need 'em Superyard XT gates were a life saver. Are a life saver! I could NOT put my two little guys in the Graco pack and play. Waaay too small. I have one that hasn't been used since my old soul graduated from it. Besides, containing even one in such a small area always felt more like kennelling or caging. But, using two sets of these interlocking gates and two walls made safe a HUGE area that the boys could terrorize (as you can see in the picture they did... my little climbers). I couldn't make the whole house safe and keep track of two so I made large areas safe and contained them. It worked beautifully until Michael, the future engineer, figured out how to unclip the overlapping gates. I also hung little toys, mirrors, noise-makers and rattles all over the gate for stimulation. I didn't go out and buy these items separately. I borrowed them from my floor-mat, jungle gyms once they'd outgrown those. The gates were also great, once the boys were set free, to contain fragile and/or potentially dangerous items like Christmas trees. And, without these gates, the beach would be a living nightmare. But, two sets joined together contain the whole family, beach blanket, sun shelter, toys and beach chairs for 5+ people. Having only one point of entry makes it easier to watch the flock out in the wilderness. Like the shepherd, I guard the gate and, once again, let the boys and Olivia have at it. By the way, the table bumpers in the picture above were a serious life saver as well. I still have them on that family-sized, heavy-duty kitchen farm table that I picked up from someone who no longer wanted/needed it (read: garbage-picked). I cut the legs so the table top was just about waist-height for the boys (to help with pulling up and cruising without tipping), sanded and refinished the top, added the bumpers and it now doubles as a perfect-heighted craft and activity table for them. They can destroy it and I don't care. But they can't tip it over. Works for me.

I could on go touting more fantastic products, tricks and/or methods that worked for us and how I used them with a twist... But I won't. I fear neither you nor my kids will tolerate any more. I know I didn't do 10 things but they say you've got to leave people wanting to come back for more. Not sure I've done that but I know -- FOR ME -- time is of the essence in my crazy mama life and nothing can take too much of my time or I won't do it again. So, I'll hit some other situations/milestones another time. Or, if there's a specific developmental area you're working on and you want to know what I used and how I'm tackling it, post a comment and/or send me an email and I'll respond. (Spamming teaches us to publicly post our email addresses in this cryptic format: marshall together with hagan, no spaces, then the at sign followed by verizon and the dot plus com.)

I'm also thinking you should all write your own "Gotta Have It" blog posts and link your post to mine and I'll link mine to yours and then the blogosphere will have some really useful hands-on, money-saving tips and product recommendations for all of us mothers of children with and without Down syndrome, with and without developmental delays, all with their very own flavor, talents and challenges.... And, I won't be the only one stealing post ideas!

Friday, June 12, 2009

Proud With Down Syndrome!


I Have A Voice! I Have Potential! I Am Just Like You!
Do Not Underestimate Me!

I'm sharing these "faces of beauty and potential" at the request of Tammy at over at and because we too are "PROUD WITH DOWN SYNDROME!"

Thursday, June 11, 2009


Lately I've been complaining more than I've been thankful so this post will do my soul some good:

[1] Silly, but I felt truly thankful when I heard one of my favorite songs on the radio today -- "Spirit In The Sky". I LOVE that song and rarely hear it. Even said it out loud before the vocals started and I had to sing along, "Thank you God, I LOVE this song!"

[2] Thankful for having multiple possibilities for solving all the little and big problems that I encounter in my life. It's so nice to have choices. (Cryptic on purpose. Covers more.)

[3] That I finally got to go out running/walking this morning with my sister.... despite the rain. It felt good and I even noticed that the mile I run has gotten quicker and easier. Time to up the ante (except that would mean either waking up earlier or making my sister run when she's maybe not ready). I'll just be happy and thankful for what I've got for today!

[4] Thankful that I'm feeling good. With the running/walking and sorta/kinda watching my eating, I think I dropped a couple of pounds. I don't dare get on the scale because it feels good and I want to feel good (more than worry about that number which ultimately is what we all judge ourselves by.) And, I might get discouraged if the number didn't change or worse!

[5] I'm thankful to Professor Paige at Nassau Community College who continues to give me and my children the opportunity to touch lives and educate the future educators and therapists on what Down syndrome is and what it is not. We spoke to her Psychology/Special Ed students at the college last night and I dare say they were all impressed. I'm certain meeting Brian and Michael changed their view of Down syndrome for the better... forever. May they always remember Brian and Michael and our message to "treat the individual" throughout their lives and careers.

Wednesday, June 10, 2009

Special Exposure Wednesday

Amidst the clutter of my life, Brian and Michael are outstanding!

Sunday, June 7, 2009

I Love A Fair! But is Heckscher Still Heckscher... or Reese?

Summer 2003: My old soul is not quite 2 years old but she's one of those... well... old souls. She knows and can do stuff that is waaaay beyond her 2 1/2 years. I love taking her to festivals and carnivals and any other great people watching events. So, this day, I'm on my way to Hecksher Park for a country fair. There are two Heckscher Parks on Long Island. One in Huntington, which is all the way north of here. And, one in Bohemia, which is pretty far east of here. The country fair is in the north country... so off we go. What should be a 45 minute drive is extended because of Long Island's beach traffic and then further complicated by lack of appropriate signage. You'd think, if you're having a country fair, that you'd hang a sign or two as to WHERE the fair is being held. Needless to say, I drive all over, I ask for directions numerous times, all to no avail. I am in Huntington but cannot, for the life of me, find Heckscher Park.

So I think, perhaps I got the town wrong and it's at the other Heckscher Park. After all, if I was having a country fair, I'd advertise it SOMEWHERE on the roadways in town. After hours of driving to and around Huntington, convinced there's no fair here, I finally head out to Bohemia. Significantly east as the bird flies, on Long Island during the summer it takes a dog's life to actually get there due to the aforementioned beach traffic... One of the many benefits of living on Long Island... the beautiful beaches, I mean... not the traffic (which, in truth, is there all the time we just call it something different for each season). Finally arriving in Bohemia, the man at the booth says, "Sorry, no country fair here. Must be Heckscher Park in Huntington. I can give you really easy directions to get to that park". Thank you but no thank you. I've been driving all morning with my poor little girl who still doesn't know what a country fair is (at least I don't think she does though as it turns out her old soul understood more than I knew at the time). So, I drive away frustrated and headed west... homeward bound. But wait, poor Olivia still has not been to the country fair. Nor out of the car for hours now. So, nearly home, I head south and pit stop at a lovely playground just north of Freeport's Nautical Mile known as Reese Park. We play for hours, enjoying the sun, sea air and playground equipment. We stop off for an ice-cream at the Hershey Ice Cream shop on the Nautical Mile before heading home... And a good time was FINALLY had by all.

Christmas 2004: Olivia gets a pair of guinea pigs as pets. She names one Heckscher after her favorite park... the one in Freeport! You see, that day last year as we drove all over kingdom come looking for a country fair we never found, Olivia caught on that we were looking for Heckscher Park. So, when we landed at Reese Park at the mouth of the Nautical Mile, her almost 2-year- old brain registered the park we finally visited as Heckscher Park. And so it was forever and ever. Until....

June 6, 2009: We're making our annual pilgrimage to the Nautical Mile's Summer Festival being held this weekend (as I said, I love a good fair and this one has the best people watching around... second only to events that happen in The Village). We drive right past Heckscher (Reese) Park looking for a spot near the amusement rides when I hear it, "Huh... MOM! They changed the name of this park! This used to be called Heckscher Park!" At 7, she reads well above the 5th grade level. Yes, my old soul is an avid reader and reads EVERY word on EVERY sign we pass. Needless to say, she didn't miss the sign that said, "Welcome to Reese Park"!

My mother and I were crying we were laughing so hard as I tried to explain that, in fact, this park was never called Heckscher Park... that she mistakenly THOUGHT it was all these years because of that one fateful day in 2003 when we couldn't find the country fair being held in Huntington's Heckscher Park. Olivia was indignant at never being corrected. Me? I'm wondering if that means we would have been calling her guinea pig Reese all this time instead of Heckscher?

Saturday, June 6, 2009

Down Syndrome Awareness: The Wonderful Thing About Triggers

I was perusing a new Down syndrome-related blog I happened upon ( when I came across a post where the author asked how other bloggers keep their post ideas in their heads before they get to their keyboards. As a blog reader/writer, I'd like to say what we all feel deeply... We bloggers love comments... Even more than we love the increasing number on the visitors counter! Comments confirm that someone out there cared enough to read what we took the time to write. And, speaking for myself, I blog for sanity [and happiness] so acknowledgement helps! So there I was, commenting on her post about how I recall my own blog post ideas when it occurred to me... THIS would be a great post!

Yes, along with my sunglasses, I keep a pen in my car visor and have been known to scribble a trigger word to remind me of my newest post idea on my hand as it occurs to me. I drive a lot (3-hours/day chauffeuring the kids to and from school) so the best ideas often pop into my head when I'm driving. At the first traffic light or stop sign, I grab the pen and write my trigger word. Unfortunately, sometimes it's a long while before I hit a traffic light (lots of parkway driving) so the idea is more developed and results in more than 1 or 2 trigger words. When this happens I could easily end up with a small novel on my left palm, circling around the front by the time I get to my keyboard.

As I explained to my fellow blogger, I write it on my hand because I KNOW I have to deal with it before my next hand-washing. That means I CAN'T ignore it lest it goes down the drain with the soap and water. Cleansed from my brain! And no, I don't transfer it to a scrap piece of paper and stuff it in my jeans pocket to be dealt with later. Experience tells me that the dryer is full of washed out, balled up scrap papers with really good blog post ideas! So, I tell it to the hand... and then hit the keyboard first chance I get!

With 3 kids, often I cannot sit at the computer and flesh out the idea no matter how much of my hand is covered in writing... because the kids will absolutely NOT allow me that time. When this happens -- more often than not -- I have a cheat sheet on my computer desk with bulleted trigger words for post ideas. Scribing from my hand to that cheat sheet also helps and I may take a moment to add to the trigger word... Or, if I don't have that moment, I may not. When all is finally quiet, and I have a second to sit at my keyboard, I refer to my cheat sheet and sign-in to blogger! Occasionally a cryptic trigger word fails to trigger the brilliant idea I had... but, thankfully, that doesn't happen too often.

Now I know my method is very.... well, immature? Teenager-ish? And, yes, depending upon where I'm going, I get some very surprised looks when people see my left hand with notes jotted all across my palm, sometimes intermingled with a desperately-needed but oft-forgotten grocery list item. Those who know me, have asked and now understand that my method works for me. Those who don't, eye me up and down like I'm a nut-job. Maybe they're right... Maybe not! Those odd looks really don't bother me... Anymore. Honestly, I get them all the time!

After all, I have identical twins. This alone attracts a lot of surprised and sympathetic looks. Every body's intrigued by the identical twin phenomena! Myself included! AND, my boys happen to have been blessed with an extra 21st chromosome (aka: Down syndrome) which is an exceptional rarity. MOST folks approach, baited by the twin-thing and are hooked into conversation by the Down syndrome thing. Yes, my boys and I are on a mission to educate as many people as possible about Down syndrome and what it is... and what it IS NOT! And, there are no better teachers in the world than Brian and Michael themselves! My boys are absolutely wonderful ambassadors... Living and breathing and intelligent little examples of what's possible. No one who has ever met them, walks away without a new and more positive idea about Down syndrome! And I assure you, they don't have to write it down on their hands to remember. Folks who meet them will NEVER forget them!

So, to be honest, I not only don't mind, but I've come to welcome people's surprised looks! It's an opportunity to educate yet another person about Down syndrome... You see, I blog about my happy life... a life forever blessed with the presence of Down syndrome. And, the writing on my hand never surprises them as much as my beautiful boys do.

Friday, June 5, 2009

What If? The Biological Side of Childcare

Beware! This might be a very unpopular post... All I ask is that you humor me. Hear me out for just a moment. Worst case scenario, I'm wrong and/or you disagree and you can tell me so in the comments section. Best case scenario, I might just get a chuckle out of all you hard-core, do-it-all Mommy's out there.

Are you frustrated that your husband doesn't do "his share" of the child care tasks in your family? Maybe you work outside the home too and it's all left for you to do when you get home while he channel surfs the seasonal sports or 24-hour news channels. Maybe you work 24/7/365 as a stay-at-home Mom with no vacations and no pay and never catch a break. You want, need and deserve his help. I agree 100%. After all, they are HIS kids too... right? He fathered them, why doesn't he share the responsibility for caring for them? And, why do you have to TELL him what to do instead of him just doing it? You wish he would.... You want him to... Why doesn't he... Blah blah blah blah blah!

Have you ever said, thought or heard:

"He doesn't change a diaper unless I specifically tell him to... five times!"

"He won't clean up after the kids -- toys, food, spills -- nothing! (Heck he barely cleans up after himself!)"

"My husband can barely survive/take care of the kids when I'm sick or away for even an hour!"

"He's never even given the kids a bath and the youngest is already x years old!"

"He can dress himself impeccably but can't put together a matching outfit for our child!"

"Mine doesn't even know where the kids' pajama drawer is!"

"Come on! He can't run a brush through her hair? Seriously?"

You get the picture. We've all heard and/or confessed these or similar sentiments out of frustration at one point or another. So, what if the 1950's-era thinking that Mommy [stays home and] takes care of the kids is biologically correct (acknowledging that the "stays home" part may not apply in this day and age)? Generally speaking, we mothers are better at child care tasks... that's why they call it "mothering". I've never heard the term "fathering" except in the reproductive sense! Even if you wouldn't say it out loud or to his face, I think most agree, we're better at this stuff! But, what if we're better, faster, stronger... even bionic... when it comes to child care because we're biologically meant to do it? What if our frustration is because we expect our cave men -- ooops, I mean husbands -- to do something they are not biologically programmed to do? Sure... they CAN do it. It's just not in their NATURE to do it!

Have I got your attention?

Everyone acknowledges that we females are designed physically different than men, specifically to bear children. It's also not a stretch to accept that our feminine design also encompasses psychological preprogramming that includes caring for, nurturing and raising our children. I don't think there's many who would challenge this notion. If this were not so, or so the argument goes, men would also have babies... and breasts (for nursing)! Take a moment and think about that! In so many physical and psychological ways, we mothers are the natural caretakers. In our society and in these economic times, this does NOT mean that women should be solely responsible for ALL things pertaining to child care... no more than men should bear the entire burden of fixing things around the house. (Was that a chuckle I just heard? Oh, maybe that was me.)

Understand, I'm just trying to ease my own frustration in always having to ask for his help by acknowledging that maybe it is more natural for me to think, breathe and do child care tasks than it is for my husband. Mind you, my hubby jumps right in when he's asked to do a particular child care chore. But, having to ask has always bugged me. And that's just my point. Perhaps it's a biological thing and not an "it's your job" thing. For me, child care IS automatic; as is the propensity to think through the ramifications of not doing any given child care task. For example, a soiled diaper is not just a soiled diaper. For me, it's an urgent task that needs immediate attending to or else.... I think:

Dirty diap = diaper rash = miserable baby = less sleep tonight = tired Mommy = potentially bad day tomorrow = CHANGE THE DIRTY DIAPER NOW; or

Dirty diap = diaper rash = $35 jar of Triple Paste = less money for __ (fill in the blank) = more overtime for hubby = unhappy hubby and no break for mommy = tired mommy = potentially bad day tomorrow = CHANGE THE DIRTY DIAPER NOW; or

Dirty diap = boy puts hand in back of diap = really bad, smelly mess on his hands and clothes and, if I'm not quick, maybe elsewhere... yuck = an urgent and unscheduled bath and load of laundry = getting into bed late = tired Mommy = potentially bad day tomorrow = CHANGE THE DIRTY DIAPER NOW.

Trust me, these scenarios have NEVER occurred to my husband. He thinks:

"Uh oh, I smell a dirty diaper. That's going to make me gag. MAGGIE, BRIAN'S GOT A DIRTY DIAP! Man, that stinks. I hope she changes it soon. Wow, that was a great catch!" And, he's right back to the baseball game with no more thought to the diaper.

Honestly, I've heard SOOO MANY mothers/wives lament over how their hubby's don't voluntarily take part in the day-to-day child care. It seems participation is by invitation only. It's become such a common and growing chorus (probably related to the age of our still-dependent children) that I feel like I'm living a scene from Horton Hears a Who... Eventually some super being out in the universe is going to hear our cry and intervene, not necessarily the way we'd want them to. And, yes, we all have that friend who says her husband is "really good with the kids". But, when pressed, even these women will agree that, as good as they are, they're not Mommy. By the way, most of our kids will agree that Mommy's better at it too! Even liberated (read: honest) hubbies will concur (perhaps as a way to stroke Mommy's ego to get out of the child care task at hand).

Are you on board with my thought process yet? Like my brother-in-law says, "it's basic common knowledge".... We're better at child care than they are. Could we ALL be wrong?

So, in pondering this phenomenon, I recently decided to change my perspective. No, I'm not going to lower my expectations but I am going to alter them a bit. What if, instead of getting frustrated with my hubby for not automatically knowing and doing what [I think] needs to be done, I accept that he doesn't know and won't do but, rather, needs to be told, reminded, nudged? What if I accept that it is not because he doesn't want to so much as it is not in his nature to even think of, never mind attend to, such child care tasks the way I do? What if I accept that I attend to child care the way he attends to, maybe, a noise in the car engine (which, by the way, I am not always inclined to notice or do anything about... besides mentioning it to my husband or maybe another man... my mechanic)? Hmmm... In fact, I don't know many women who would be interested in hearing about the new bang in my engine.

Perhaps I'm not biologically programmed to attend to that inane stuff and he's not biologically programmed to attend to child care stuff. I learned, sometimes the hard way, to watch the temperature and gas gauges; to record my mileage to track consistent engine performance; to pay attention to the clicks and dashboard lights and smoke billowing out from under the hood of my car! LOL! I bet my husband knew instinctively what that was when I told him. I may not be speaking for all of us woman but I know I must have hit a cord somewhere with some of you. I can hold my own against any man with tools because, growing up, I learned well from my father. But, my husband does it better... naturally.

Given all that I've learned over the course of my life, I am very capable. I do a lot around my house outside of the child care tasks. As such, it's not unfair to ask that my husband take on some of the child care stuff. However, recognizing that he is not biologically programmed and hasn't quite grasped the full breadth of the child care tasks, I guess it's not unreasonable for me to have to ask, remind or nudge him in that direction. Acceptance! Not that he shouldn't help but that he might have to be told how to help.

For the Record: This is not a criticism of my husband but my acknowledgement of, and thoughts on, a common complaint many mothers I know have with the distribution of child care-related labor.

Thursday, June 4, 2009


There's so much... Where do I start?

[1] I'm thankful that, at my age, I still have the strength and stamina to dig out 15 8-10' tall Rose of Sharon bushes donated by a Freecycler to plant in my yard as a hedge.

[2] I'm thankful for the girlfriends I can call when I feel like I just need a friend -- whether to talk or to listen -- just another human being who understands where I am without my really having to say it.

[3] I'm thankful for the experience of the parents who have gone before me and are good enough to share their trials and tribulations with me so that, once again, I know that I'm not alone and it will all be OK in the end... Thanks Steve!

[4] I am ever so grateful for the rain this week. While it certainly put a damper on my daytime activities, it also put a damper on the 5:15am wake up calls to go walking with my sister. I love the walk but I needed the sleep... this week.

[5] I'd like to thank all the military people who serve both here and abroad to help protect me, my family and every American... My deepest gratitude to those who spend their lives ensuring that all Americans are free and safe each day. Those who choose to serve are certainly Angels Amongst Us (watch for my next Angels post). Thanks, specifically, to Rachel and her husband, who serves in the US Coast Guard stationed here on Long Island, and to Marko, retired Marine Corps. They and their families have sacrificed much by volunteering to serve in the United States Armed Forces and I am very thankful and proud of them.

And, finally, it's time for bed... Thank God!