Friday, May 29, 2009

Down Syndrome Awareness -- Separation Anxiety With a [Twin] Twist on Transition Tools

Brian and Michael both had tonsillectomy/adenoidectomy surgery at the end of March. Both went to the ER for dehydration. Both were kept up well into the night being poked with needles, hooked up to IVs and x-rayed. Brian, however, had to stay in the hospital with Mommy for 3 days while Michael got to go home with Daddy. In the 7 days immediately following their surgery -- including the surgery itself -- the boys experienced physical pain and illness and extreme psychological stress from undergoing such a painful procedure, from their frightening and painful ER experience and... for Brian, the hospital stay... for Michael, the separation from Mommy during this physically and psychologically traumatic time. Despite undergoing the same procedure and nearly the same recovery, and despite being identical twins, each boy's experience and how he handled it has been completely unique. Brian is "over it" unless he spies the white-coat of the MD or nurse coming towards him at which point his blood pressure actually skyrockets. (The medical term for this is white coat hypertension.) This never happened before the surgery. Brian had been the kid who rolled up his sleeves for the nurse to give him a shot. Not any more! But, other than that, you'd never know the he's ever experienced a moment of stress in his life. Sadly, Michael is not having such an easy time getting past it. He's suffering from separation anxiety over leaving Mommy or Mommy leaving him. Why? Because Michael was traumatized, as was Brian, but didn't have his Mommy at a critical juncture to help him through it. And, because he's a different kid!

Michael doesn't want to go to school anymore where he loved going to school before the surgery. When we're at home, he doesn't want Mommy to be outside of the house when he's inside (or vice verse). Mommy can't go anywhere in the evening without Michael breaking down in a puddle of giant alligator tears, sitting by the door waiting for Mommy to come home. And, he wants Mommy to sit by his side even when he's engrossed in movie watching or game playing. This is a HUGE change from his pre-surgery behavior.

So, how can we help Michael get over it? His teacher quoted research in favor of quickly removing Michael from me as soon as we arrived in the school lobby -- despite his crying and holding on to me -- in an effort to avoid prolonging his "pain". After days and days of doing this, the teacher assured me that Michael had calmed down not 5 minutes later despite his continued distress during the process. This method is analogous with ripping the bandaid off the healed wound. Don't prolong the pain, just rip it off quickly to get it over with. The key word here is healed. Michael's wound is not healed. It is oozing psychological fear and pain and ripping the bandaid off quickly just makes him more afraid of bandaids and the person doing the ripping (school and teachers... like Brian's white coat and doctors/nurses). This has been our experience exactly as Michael began first not wanting to go into the school atrium, then not wanting to get out of the car once we arrived. Then he began whining "home" as we neared the school's location, and finally, not wanting to leave the house in the mornings saying in a sad and fearful tone, "Nooo. Home. Home!" as he held onto me tightly. I tried talking about how they would see all their friends and teachers and how they would play great games and take part in fun activities, naming names and naming games, to no avail. Brian was very excited while Michael whined pathetically, "No.... home.... home.... home...."

I was personally against the bandaid ripping method from the start for reasons mentioned above. And, my concerns were supported by Michael's worsening stress. In my opinion, easing him through this transition was/is key to not causing more trauma and helping him to recover. Pulling from my undergraduate college degree in Psychology for Exceptional Children, I quoted research myself, explaining to the teacher that physical and psychological trauma registers in the brain of even the youngest infant and can negatively impact their behavior though the specific traumatic incident cannot be recalled by the sufferer. As such, I developed my own plan and discussed it with the teacher, therapists and our family EI Social Worker. All approved and were willing to give it a try.

First, where Michael was going and what he was doing when he got to school had to be better than hanging out with Mommy. So, getting Michael to school in time for morning playtime (rather than arriving during snack time) was part of the plan. Second, I decided to have the teacher/aide take only Brian into the classroom, leaving Michael alone with Mommy in the lobby for a few minutes longer. I kiss Brian goodbye, give him a hug, strap on his backpack and, like the mostly untraumatized little man he is (no white coats at school), he walks enthusiastically to their classroom to begin his day. Immediately after hugging and kissing Brian goodbye, I give Michael a hug and kiss and then figuratively ignore him while he waits for the teacher or aide to return. Quickly, Michael figured out that his time in the lobby was not nearly as much fun as his time in the classroom. He immediately recognized that his otherwise always-available, identical twin brother/built-in playmate was not with him. Suddenly, Michael found himself having to choose whether he wanted to spend alone time with Mommy or fun time with Brian and, inadvertently, his friends and teachers. Finally, when Michael's teacher or aide comes back to collect him, still a bit unsure of his choice, looking back and forth between the teacher and Mommy, I say, "Oh Michael, look! Brian forgot his Woody Doll/toy truck/apple juice (fill in with Brian's favorite anything for today and use something different each day lest he catch on). Can you bring this in to him?" Now, Michael can easily choose to be with his brother, go to the fun classroom and do something for Mommy all at once. Bringing Brian his toy is the excuse he needs to push him over the edge. He can get what he wants in so many ways by going to the classroom as compared to staying with Mommy who has suddenly and uncharacteristically become very boring. (LOL).

This method has worked so well that by the time the door closes behind Brian each morning, Michael has his backpack on and is banging on the door to be let in so he can run down the hall to join his brother. The teacher wanted to take them both in this morning, but I held Michael back. I don't want to rush the process. I believe it's too soon and I don't want him to backslide! For instance, he still can't say goodbye to me because, once reminded that we'll be apart he's holding on to me again. But, I know it's just a matter of time before he insists on getting through that door before his brother... like he did pre-surgery.... pre-trauma!

Of course, this does not address the notion that, at some point, Brian and Michael may benefit from being in separate classes at school. For now, for us -- this practice is unsupported as research done specifically studying Brian and Michael shows that they're academically and developmentally on par with each other in every way, neither overshadowing the other, and that they actually champion each other and speak/participate more together than they do individually. Though separate classes was suggested for administrative reasons by their school's representative as a point of consideration for September 09, a county professional in attendance at that CPSE meeting smartly cautioned the advisory team that separating Brian and Michael could NOT be undertaken lightly given they are identical twins with special needs who have predominantly not been separated (with the exception of therapies). He went on to say that you cannot just put them in separate classes without preparation as that separation could be very traumatic and could cause significant psychological damage. Noting that if separation was deemed absolutely necessary (unusual at the tender age of 4), it should be done gradually, hour-by-hour, day-by-day and week-by-week to avoid causing trauma. Smart man to recognize the potential for trauma well before we had such an experience with the boys' surgery! That said, I'm convinced that separating them any time soon using the bandaid-ripping method would be absolutely unacceptable as it would surely cause both boys much stress. Thank God this man stood up for Brian and Michael and said what he did! I'm not sure the Committee members or school reps would have heard it quite as loud and clear coming from me.

Obviously, I'm worried about that future happenstance. But, if we're all doing our jobs between now and September, separating them should be unnecessary... For now, anyway. I'm also hoping that our current solution for Michael's separation anxiety has taught us all something about kinder, gentler ways to accomplish the task at hand and can also, perhaps, serve as a model to help ease them into what seems to be an eventually-inevitable separation at school.

But, I'm not going to worry about that now. I'm just taking one day at a time. And, today, Michael was very happy to leave me to give Brian his green matchbox pick-up truck... in the classroom full of kids and fun stuff down the hall.

Down Syndrome Awareness -- Questions About Incidence

It just occurred to me that I have not seen any new statistics on the incidence of Down syndrome in a long time. I'd be interested to know if it has changed at all worldwide and, especially, locally -- in the US, NY and Long Island.

The reason I'm curious about this is that many professionals have said to me that Down syndrome is no longer just or predominantly afflicting the children of woman over 40 anymore but that it is spreading down towards woman who are [often much] younger than 40 more and more. Are there statistics that support this statement? If so, has the 1 in 800 before 40 and 1 in 100 after 40 statistics changed at all? Has anyone re-examined and/or recalculated recently given this "trend"?

Also, I have heard it quoted many times that 92% of all fetuses diagnosed with Down syndrome in utero are aborted. I also know that with all the in vitro births, an embryo with Trisomy 21 would NOT be implanted. As such, I would tend to think the incidence statistics would also be changing... Unless:

[1] the incidence of Down syndrome is on the rise and terminations of fetuses with DS counteracts that trend or [2] these terminations are localized (to the NY area?) and don't impact the statistics much or [3] the two trends together erase each other?

I've heard nothing new... Have you?


I'm thankful for:

[1] time (time to do the things I have to; time to do "optional" things; time to do nothing at all; time to spend with my kids; time to blog; time left in my life...)
[2] sleep (we're all sleeping through the night! Hear me knocking?)
[3] all things in nature (though I'm a bit tired of the rain)
[4] my 3 beautiful children (who never cease to amaze AND amuse me)
[5] my husband of 9 years (He's still the only man I'd say "I do" to!)

Thursday, May 28, 2009

Random Funny Thought by My Old Soul

The other day as we made our way down Sunrise Highway -- which, for all you non-Long Islanders is a road that goes from the NYC border in Queens nearly all the way to "The End" in Montauk (though it changes names here and there) -- Olivia, my 7-year-old future marketing executive, spied a new sign hanging on the railroad trestle touting alternate transportation in these tough economic times with the high-cost of fuel. I've seen the sign but never attended to it's placement. Leave it to the Old Soul to notice:

"Mom, that' sort of funny, Isn't it? The sign hanging below the train tracks says, 'Trade in Your Gas Station for a Train Station.' and it's hanging right above the gas station on the same corner. It's like they're saying it right to the people who are buying gas at the gas station! I bet the guy who owns the gas station doesn't like that sign much."

Now, that's targeted marketing!

Wednesday, May 27, 2009

ANGELS AMONGST US - The Sisterhood of the Traveling Pants

I usually don't check the mail box. Either Olivia and Grandpa do it after school or the "Sarg" does it when he comes home. I guess I don't check myself because whatever is out there will still be there when others who love to check the mail go looking for it. I am the mail sorter, disposer and the bill payer in the house but, somehow, when it's sitting in the mail box, it is out of sight and out of mind.... mine anyway. So, the other day, for no particular reason, I decided to check the mail box. And there, tucked behind several pieces of direct mail (I don't call it junk because [a] I used to be in the business and [b] if properly targeted, it's not junk to the interested receiver) was a brand new pair of bright pink water shoes in exactly Olivia's size! BONUS!

Recognizing this was an anonymous hand-me-down gift I'd like to thank the giver (Joanne, I know it's you) for the brand new hand-me-downs that apparently didn't fit your daughter when you unpacked your summer holdovers this year. Olivia and I appreciate it more than you know. She loves them and has barely taken them off! And, it saves me money and a trip to the store. Thanks so much.

Obviously, with twins you need twice the clothes and then some, I think. That's because you're more busy chasing two same-age children around (yes, that does make it a little different than chasing 2 different age children). Or maybe that's just my excuse for getting less laundry done! Regardless, we welcome hand-me-downs with open arms for the boys and for my old soul who loves recycled clothing because she HATES shopping (almost as much as I do). Seasonally, we receive clothing for the kids from multiple sources AND we pass on our outgrown clothing to other children in the neighborhood as well. We call it the "Sisterhood of the Traveling Pants" because often well made, well preserved clothing make more than one round through a family from older sibling to neighbor and back to a younger sibling. I don't even know when or how it started. Seems like it has just always been so. Personally, I don't understand those parents who wouldn't let their children be caught dead wearing "used" clothing. Half the jeans these days are hole-y (not holy) and worn out on purpose. So, you're PAYING for the manufacturers to figure out a way to fake the wear. Why not wear the real McCoy? And, with just one wear, your brand new $50 size 2T jeans are also "used", so what's the difference? Not to mention that little ones grow so quickly and wear their clothes for such a short time (if at all -- we're often handed down brand-new-with-tags clothing items like the pink water shoes) they couldn't possibly wear them out to the point of uselessness. It only makes sense to share. Besides, it keeps perfectly good clothing from filling up our dumps and further polluting our world.

For those who don't have Traveling Pants benefactors, freecyclers ( are constantly giving away bagfuls of children's clothing in your area. So, if you're looking to pick up or pass on some gently used clothing, join Freecycle or donate to your local thrift shop. Also, don't underestimate the power of the seasonal yard/garage sales. 2 summer's ago, I accidentally happened upon not one, but TWO yard sales selling twin boy clothing in like-new condition. How's that for karma? I bought up a bunch of stuff in slightly larger sizes and have them stored in plastic bins marked by size and season until the boys fit into them. Garage sales, thrift shops and Freecycle are great places to pick up gently-used, age-appropriate clothes as well as toys and games for the kids. Remember, all children grow up and out of this stuff too soon. Why not share it with others instead of tossing it in the trash? Especially in today's economy, there are many families -- my own included -- who are working hard to make ends meet. Why have your neighbors spend their hard-earned money on brand new items when yours will fit the bill -- or children -- perfectly? That's not to say I don't have to fill in the gaps with personal wardrobe essentials but I certainly couldn't afford to buy or dress my kids in some of the clothing we've been gifted via the Sisterhood of the Traveling Pants. I am ever so grateful. And, my kids look good to boot!

One of the boys' therapists even commented once that Brian and Michael had the nicest wardrobe she'd ever seen on toddlers. "All hand-me-downs", I informed her. We've been very lucky to have a couple of generous benefactors with very well-dressed twin boys.

Choosing to GIVE when you don't have to; to strangers; to neighbors; when it's easier to throw it in the trash is a beautiful gift for those on the receiving end as well as for the giver (not to mention the fact that the earth and all it's inhabitants benefit from this practice too). So, many many thanks to all my Angels Amongst Us in our "Sisterhood of the Traveling Pants", for all the beautiful clothing you have knowingly or anonymously passed on to us. (Jen, Joanne, Caren and more) And, thanks to all of you who receive our gently used clothing for you have afforded me the gift of giving to others (and saving the earth in my own little way). I hope you are as happy receiving the traveling pants as I have been.


Saturday, May 23, 2009

Down Syndrome Awareness -- Pit Bull Parenting (with a secondary message on profiling)

Foreword: Profiling is acting based on predisposed beliefs of a group stereotype. In a scene from Men In Black II - Michael's current favorite -- Agent J's newest partner, Frank (a pug dog), accuses J of canine profiling. If you've read any of my previous posts on Down syndrome Awareness, you know that as a parent of 4-year-old identical twin boys who happen to have Down syndrome, I'm completely against profiling of any kind... Even canine (after all, I have a very non-aggressive Chow Chow). However, in this case, "Tenacious Parenting" just doesn't quite embody the same spirit as "Pit-Bull Parenting". So, please pardon my breach of etiquette as I use canine stereotyping that may not be accurate for all members of the Pit Bull genus but certainly rings true as a stereotypical analogy for this parent of children with special needs.

Why Pit Bull Parenting? In the fight for services for my children, I have come to realize that I have to be more than tenacious. I learned quickly, going into this fight, that there is no rest for the weary and that I can never give up the fight. Throwing in the towel is not an option. As the mother of children with special needs, I realize I must approach some parenting tasks more like a pit bull -- [figuratively] bloody and scarred from the last round, I get back in the ring to ensure that my children receive all the help, services and attention they need to foster their development. I do it because I am their mother. I do it because, more often than not, no one else will. I do it because no one else needs to like I do.

For some, providing services is just a job that ends each day at 5:00pm. For me, as a parent, making sure my boys have everything they need is in my nature. It is my life. Like a pit bull - who, by the way, has a structurally wider-set and, therefore, physically stronger jaw than other dogs -- I will not/cannot give up. I continue to hang on, re-strategizing perhaps, until I win the fight. I've heard what happens to the losing dog and that cannot happen here. I am fighting for the independent lives and well-being of my children.

Following the pit bull analogy, unless inbred for fighting -- which, thankfully, I was not -- they can also be very smart (read: trainable. No, I'm not tooting my own intellectual horn, here) and loving dogs. Females are notoriously good mothers, appropriately protective and caring for their pups until they are able to live independently. A well-bred, well-trained pit knows when to fight and fights to win but also watches and waits for signs that there is danger afoot and a fight is forthcoming and inevitable.

I'd like to think I'm like the well-bred (not inbred), trainable (if not yet well-trained) mother pit with a calm and loving nature and built-in tenacity for the utmost endurance when it comes to raising my children. I know that I'm in this fight for the long haul... until my children are grown and living independently. I also realize that not every interaction is, or leads to, a fight. Thus far, in my dealings with service providers, I have mostly found the agencies and therapists more than helpful and willing to provide information to me and appropriate services for my boys. When I sensed resistance, I fought smart by finding a way to garner the services without breaking the rules or antagonizing the other dogs (remember it's JUST an analogy!).

When the boys' new preschool representatives and the NY state service-level guidelines indicated that speech services 3x weekly were warranted based on their evaluations, I knew that they needed more. So, I requested an evaluation 1 month into their new school year to be performed by someone who was not familiar with them -- unlike the former evals done by their Early Intervention (EI) speech therapist who was well acquainted with their idiosyncratic articulation problems. The new results indicated that they could not be understood at least 75% of the time by a stranger, as the guidelines are written, so another speech session was added. When the ending bell rang, the round was awarded to me... Actually, to my boys because they got what they needed, and were legitimately entitled to, to facilitate their speech development!

In another situation, I'm still in the ring. Admittedly, it has not been my strongest showing as I backed off for awhile. I had other more critical fights to fight and was less sure of myself than I should have been. Late in the EI process, the boys briefly used UCLB orthotics for pronation and arch support due to ligament and tendon laxity (they have mildly relaxed ankles and a natural arch that collapses under their weight). At that time, the need for the shoe-fitted orthotic was borderline and our trusted Physical Therapist (PT) was testing them with and without the orthotics to further determine effectiveness to address their particular weaknesses as well as potential problems the braces introduced themselves. We were in the process of attempting to have the orthotics cut back to half-foot when the boys transitioned out of EI to preschool. With the encouragement of our EI PT, I requested that our newly assigned PT examine the boys' feet and ankles and help determine the need for the continuation or alteration of the UCLB orthotics. After several attempts -- read: many many communications both oral and written -- the PT did not engage, failed to respond to my inquiries and I finally -- unlike a good, tenacious pit bull -- backed off. In my defense, it did not seem the time or place for that fight. AND, I had other fights on my ticket. Recently, that PT -- my would-be opponent in this fight -- served up some information that indicates the match is on again. After attending a seminar about a new, soft orthotic, she sent out a generic note to us parents of children with Down syndrome (did I mention I hate profiling?) about how their low muscle tone is an indicator that they should be using these newfangled orthotics. Suddenly finding myself re-engaged, I mentioned my earlier requests made to her no less than 6 months ago and, though she acknowledged me, she did not excuse herself, but rather went on to explain that these new orthotics would solve the problem... The one I'd asked her to evaluate in September, October, November and December of 2008. STILL, I don't believe she has specifically evaluated my boys' borderline low muscle tone for their orthotic support needs as individuals. The assumption is, since they have Down syndrome, they have low muscle tone which results in pronation that requires correcting. All three statements may or may not be correct to some degree for my boys or anyone with Down syndrome... The thing is, I don't believe she has even LOOKED at my guys bare feet. (Did I mention I hate profiling?) Honestly, I'd eat her up in the ring. It wouldn't be a fair fight so I am refusing any fight and choosing, instead, to go right to the boys' former Orthopaedic specialist to determine their specific needs. I mean, why get in the ring with a less-engaging dog when I can go to the pros? Right? If they say the medical need for ankle/arch support exists, then I believe it does. I will have my trusted orthopaedic guy review the literature our PT gave us on this newfangled orthotic and get his professional opinion on it's potential efficacy for my boys' needs. Because I trust him. Given our history, at this point, I don't have the same faith in their PT.

I think this is also a big part of pit bull parenting... Learning who to trust. And, trusting your gut about who may not be trustworthy... then, always keeping an eye on them. And, watching the older dogs (those with older children with Down syndrome, in my case), the pro dogs (professionals with specific experience treating children with Down syndrome), the winning dogs (other pit bull parents who have the services you want for your children) do their stuff. This is an important tip for every budding pit bull parent, like myself. Study others' fighting techniques to know what works and what doesn't with any particular "opponent" and to hone in on your own personal fighting style. If you're not the fighter in the family, perhaps Dad should have a turn in the ring (with your ringside support, of course). And, make sure you take only fair fighting tips from the pros and other pit bull parents who have fought and left the ring victorious before you. Though only 2 dogs fight at a time -- true statement; so this is your fight and yours alone -- recruiting other pit bull parents and experts as advisers to your team gives you the best chance for success. As a pit bull parent, when a fight appears inevitable, we need to learn to retreat, if necessary, so that we can position/reposition ourselves in a way that strengthens our chances of winning the battle. Know the other dog's strategy and style. Be aware of all the potential outcomes. And, remain open-minded about all the different ways to get the decision to go your way. Because, ultimately, it is a committee-based decision!

In the final analysis: Please recognize that THIS IS JUST AN ANALOGY! I do not believe at all that I am at war with my home school system's Committee on Preschool Special Education (heck, I'm a parent-member) or with the administration, teachers, or therapists at my boys' current preschool (We address the boys needs as a team!). I do not walk into school or CPSE meetings with boxing gloves on (though make no mistake, I own a pair and pack a strong punch). I do not interpret everything "they" say as fighting words. But, in sticking with my pit bull parenting analogy, I do recognize that each time I come to the table seeking additional or different but always appropriate services and assistance for my children with special needs, the potential for disagreement with what I think should be prescribed is there. Being prepared for every potential battle AND acknowledging that, in the course of my children's lives there may be many battles, my goal is to strategize ways to win each and/or as many battles as possible (especially the big ones), leading up to and, ultimately, winning the war. That is, at each critical juncture, I need to find a way to get the services and assistance my children require (no more, but certainly no less, than we need) to help them grow into viable, independent and contributing members of our collective and non-profiling society (did I mention I hate profiling?).

If it's a dog's life, then I am the pit bull parent raising and protecting my pups to the best of my ability, seeking a peaceful path for us all but ready to do battle to ensure my babies have everything they need to grow up to be independent, well-bred, well-trained and well-loved members of our community. No one should expect any less of me... I am a pit bull parent!

FYI: Molly The Boxer, pictured here, is just that, a boxer (not a pit bull) though some people see her short, wide jaw and, believing she is pit, are immediately afraid of her (Did I mention I hate profiling?)

Thursday, May 21, 2009



Every day this week felt like Friday just HAD to be tomorrow because I'd already been through a full week... hadn't I? No? Not yet? Oy!

[1] I'm incredibly grateful that tomorrow is Friday. No, I'm not wishing my life away. I'm glad for today and every day that preceded it. I'm just a little more tired this week from a little more running around. And, Friday always makes me happy because I get to anticipate the weekend. That is, Friday is followed by Saturday and Sunday which are days "off"... which means I don't have to wake up at the crack of dawn and drive 50 miles to get the kids to school. Instead, we all get to hang out. And, I love anticipating hanging out with my kids almost as much as actually doing it.

[2] I'm glad Summer is coming. Again, not wishing my life away. I have a bunch of reasons why I'm glad for the new season; I just love summer time and all the outdoor freedom and activities that come with it. But, also -- and maybe mostly -- I'm glad for Summer because Olivia had a rough time this year in 2nd grade. Summer means not only that she survived but that she gets to take a break and spend some much needed one-on-one time having nature-girl fun with Mommy while the boys are in school (a little bummed about that) so she can make a fresh start in September with a new teacher.

[3] I'm thankful that my "transition tool" method of getting Michael into his classroom without causing him more stress by ripping him away from Mommy -- which is the method the teachers were using -- worked well today. Sadly, the trauma of April's surgery, dehydration and ER visit followed by being separated from Mommy and Brian for the first time since his birth (while Brian was in the hospital) took it's toll on my baby. Hopefully, my new, gentler separation method will continue to work as brilliantly as it did this morning so I can finally help him to truly and peacefully get over it.

[4] I'd like to say a group thank you to the many people -- professional and lay-people -- who have helped me foster my boys' development. As such, I'm happy to be giving back to other families of children with special needs as a parent-member of Oceanside's Committee on Preschool Special Education and Committee on Special Education. I'm a big believer in paying it forward so I'm thankful to have this opportunity.

[5] A special thanks to Dr. Cindy Arroyo (the boys' EI speech therapist) and the Long Island Speech and Hearing Association ( who nominated and gave me a Parent Award the other night at their annual reception. Tangible reward in parenting is rare. So, it felt really good that someone recognized that I work hard and try to go that extra mile in doing my job well. It's not always easy and I'm certainly not doing it for the recognition -- God knows there would be very few children in the world if we parented for recognition -- but getting just a kind word or a little praise does make all that running around a tad easier (for my mind if not for my body). A big thanks for the boost!

Take a moment today and give some kind words of thanks and praise to someone you know who's been working hard without any recognition. It can make a huge difference in so many ways! It did for me. And, with that, thanks to all of you for humoring me by reading my crazy scribblings.

Tuesday, May 19, 2009

Welcome To... Gilligan's Island?

I was thinking (dangerous)... The Welcome To Holland poem represents the path parents take as they learn to accept their newborn child with special needs. The most common interpretation I hear is that the story is an analogy for New Parent Expectations... dashed. Rome is where you thought you were going when you give birth to your "typical" child and Holland is where you ended up as the parent of a child with special needs. You had it all planned out like a vacation. You thought you were going to Rome, you packed, you studied, you learned the language, blah blah blah... AND you ended up in Holland. Following the story, you eventually learn to appreciate all the beauty that Holland has to offer and you gradually come to accept that you will never be in Rome.

That sort of makes being in Holland second best. And, I'm not buying that! But, that's just me....

Between [all of] you and I, I've always had issues with this analogy. The thing is, anyone in this day and age who enters into parenthood with concrete expectations that they're going to Rome is seriously delusional and in for a rude awakening. I've witnessed the shock when new parents suddenly find themselves in the ever-changing state of parenthood. Don't get me wrong. I'm not saying the story doesn't necessarily accurately portray the journey of acceptance for many new parents of infants with special needs. It's the pre-parenthood preparation that gets me. "Typical" or not... Do they really think as new parents that they're going to have it all under control? They honestly think they know just how things are going to be? Like how tired they're going to feel after going weeks without even one single night of uninterrupted sleep? Or, 2 days without a shower (because you'd rather sleep)? And, they can figure on just exactly what to pack for such a journey beyond a crib and wall-color? Heck, even the crib didn't work for us (for our "typical" or special needs children)! And, doesn't for many... some of whom will never publicly admit that their children sometimes sleep in their bed!

Actually, I do KNOW some people like this, who think they KNOW, and they crack me up as I watch them [gracefully?] serpentine with the utmost [facade of] control -- in their minds anyway -- through their parenting careers! They put their infants on a schedule. I put myself on my infants' schedule... Easier than fighting it! Their children always sit at the table through the meal and eat all their vegetables! Mine don't even sit long enough to finish a slice of pizza! They have their infants sleeping 8 hours through the night. Yup, mine too when no one is looking. Or, maybe they mean Daddy is sleeping 8 hours through the night (while Mommy gets up every time the baby stirs). Truly... I'm still laughing!

Honestly, I never thought I was going to Rome. My personal analogy would have been more like bungee jumping with a start-up company using second-hand bungee cords. As I took the leap, I wasn't really sure whether my ankles or back would hold out for the "snap"! I'm still not sure! But, this is just how I thought about parenthood... and how I've gone through each day since. I can speak only for myself when I say I thought I knew that parenthood would be unpredictable (memories of my upbringing flash through my mind)... But, it has astounded me beyond words in every way. I don't think it's even possible to go into it with your eyes wide open... to be able to anticipate all that comes with parenthood. That's sort of my point, I guess. If it were possible to know/anticipate it all, I think there would probably be a lot less people in the world. And, it's not like you can dip a toe in and test the water before you jump. Me? I realized mid-air that I'd jumped into the deep end (though I didn't know how deep) but I did it purposefully with a song on my lips and a prayer in my heart. It was, and parenthood is, a complete leap of faith!

Now thinking about all this makes me laugh out loud... But, here's the thing that's got me really belly laughing today. It just dawned on me that I... ME... YOURS TRULY... actually thought I was going to... not so much Rome but maybe Paradise Island... when I got married!!!!! Now THAT'S funny! I'm still cracking up right this very minute at the stupidity of it! MY stupidity! How was I so realistic about parenthood and so delusional about marriage?

In my defense, unlike parenthood (because babysitting doesn't even come close) there is a precursor to marriage -- commonly known as courtship and oftentimes culminating in a tropical honeymoon -- that leads both parties to believe (perhaps falsely) that they are, in fact, headed for Paradise Island... NOT Gilligan's Island. But, clearly, Gilligan's Island is where I ended up. We are like the Howells with a twist of Everybody Loves Raymond, maybe. That would make me "Lovey" with a dab and Debra, and Tim is Thurston with a taste of Raymond. Believable. All the Howells wealth could not get them off that island. OK, so we haven't got much wealth these days either -- not since we bought a house with a 30-year mortgage and had 3 kids. Which means, I guess, we're stranded!

When I applied the Welcome to Holland concept to marriage, the whole thing began to make more sense to me... While I was totally expecting Paradise Island with all it's trimmings as I entered into marriage, I realized not too far into this trip that we missed Paradise by a smidge. But, I HAVE truly come to love and appreciate my Gilligan's Island. I have a comfortable, if not modest, home that shields me from the elements (most of the time). My husband comes home to our hut for dinner every night. And, like the 7 stranded castaways, I spend my time trying to survive -- sometimes without modern conveniences (have you seen my house?). Surrounded by my closest friends and loved ones in a beautiful place with a boat that doesn't work, there is no escaping... Even if I wanted to -- which I don't -- I wouldn't even know which direction to go. I'm very happy here on Gilligan's Isle... with a twist of Holland.

I set out on an adventure called life and it lead me here... Welcome to My Eden!

Monday, May 18, 2009

ANGELS AMONGST US - The Good Out Shines The Bad

Sometimes we are able to recognize the good only when it out shines the bad. And so it is with the Angels Amongst Us that I am recognizing today.

As new members of the Long Island Children's Museum (LICM at, I brought Olivia and one of her friends to build Fairy Houses this weekend -- as always, with Brian and Michael in tow. Happily, fun was had by all. By all, that is, except this one elderly man (notice I left out the prefacing descriptor, "gentle") who appeared to be entertaining his grandchildren for the day. Suffice it to say that his horrid behavior was the backdrop that illuminated the Angels I now wish to pay homage to.

Thanks to all the parents at the LICM who cheered my boys through the "Climb-It" this past Saturday! Who allowed them to exit out the entrance after 45 exhausting minutes of inadvertently missing the turn-offs and dead-ending (it's not one-way once you're inside) despite the best efforts of Olivia and LuLu to direct them to the exit. Thank you, dear parents, for the selflessness, compassion, patience and kindness you showed toward my children. And, thank you for sharing those qualities with your children by asking them to stand aside and/or help my special [needs] little guys finally find their way out of the maze they'd been "stuck" in for so long.

I would, however, like to acknowledge one valid point made by this ill-tempered man: You are right, there are rules to be followed. And, I'm sorry that my children had to exit through the "entrance". But, they did so on my instruction... Certainly, yelling at my 4-year-old twins with Down syndrome was uncalled for. I am an avid rule-follower and, yes, I did break the rules on Saturday... ONLY to facilitate their well-being and safety! While laws and rules govern our society and make this a less chaotic world to live in there are also principles of humanity like compassion, understanding, patience, cooperation, giving and so many other qualities which I dare say you seem to lack.

I only hope, sir, that if you ever find yourself in a situation where you need assistance or special consideration beyond the "rules", that you are surrounded by people NOT like yourself, but like all of the other parents -- Angels Amongst Us -- that kindly helped my boys to safety on Saturday.

Each of us has a choice in life to be a good example or a bad example. Many thanks to the Angels Amongst Us who chose the higher path on Saturday. What a wonderful example you were to all of the children present -- your own, mine and that ill-tempered man's grandchildren as well.

Sunday, May 17, 2009

Down Syndrome Awareness - Parenting By Committee (And I Don't Mean Husband & Wife)

You may have heard I recently volunteered as a Parent-Member of the Committee on Preschool Special Education and Committee on Special Education. That means the school district will call me (or another available volunteer parent-member) to participate in the CPSE/CSE process for other parents of special needs children navigating their way through the district's special-educational maze. As a parent-member, in theory, I am there to act on behalf of the parents with specific knowledge of the laws governing the distribution of services and without specific emotional entanglement with the child... thereby enabling me to ask questions and think more practically (instead of emotionally)... in theory!

Well, I can tell you, each meeting I've attended is highly emotional -- even for me, a detached bystander. Being the parent of a child with special needs automatically connects you with every other parent that has a child with special needs... no matter what the diverse nature of the special needs are. As such, I find myself completely understanding of the parents' plight and drive to get the best services and program in place for their child AND understanding of the Committee's need to apply appropriate services to help the child in question. It is a weird and occasionally conflicting position to be put in. I hope that I am doing justice to the role and helping parents to achieve the best program available (though the state's mandate is to put appropriate services in place... not necessarily the "best" program available).

That said, I found myself on the soapbox, giving a bit of a speech to the Committee members at my last meeting... on behalf of the parents seated at the table and for all parents of children with special needs that would sit at this table in the future.

One of the specialized Committee members offered to provide the parents with additional tasks to work on with their child over the summer in the absence of specific services. Mind you, I have requested this specifically from our service providers AND such materials and resources have been offered to me to help with my children's development in the past. I always accept them happily and use them to foster my children's development. However, as I explained to the Committee, for the record, parents of children with special needs are invariably working harder -- sometimes MUCH harder -- with their "special" children than parents of children without special needs and/or with their "typical" children. That's not to take anything away from parents whose children are "typical" or to demean in any way the difficulties encountered when parenting "typical" children... Rather, I said it to cut a little slack for the parents whose children require more --. more help, more time, more effort, more education -- in areas we take for granted when parenting "typical" children. I know. I have a typically developing child in addition to two children with special needs. While it sometimes takes a little additional effort to overcome some of the parenting adventures I encounter with my daughter... these are nothing compared to the day-to-day care, education and parenting of my boys! In both cases, sometimes I need professional help.

Committee members, service providers, state and county representatives: Please do not roll your eyes at me -- the parent of a child with special needs -- when I seek additional professional help in raising and educating my child. I am already working very hard -- literally 24x7x365 -- to accommodate my child's special needs. It is the professional service provider who has helped me get this far... Who has helped me to become a better parent by educating me on how best to help my child develop. I'm not asking for your help so I can take a break, I'm asking for your help so that my child can become all that he was meant to be.

Parents: Remember that the Committee members are tied to state-mandated laws and service levels -- your Committee chair can show you these as she did to me when I asked for more than what was deemed appropriate given my sons' evaluation levels. And, remember that the parent-member is there to help represent you to the Committee and to your school district... to help you secure the most appropriate services available. Committee members are not a barrier to providing you services -- though it sometimes feels this way -- but rather the conduit by which services are provided.

One of our Early Intervention service providers once said that EI service providers -- who provide services in my home -- need to remain professionally detached from the family. She said, "it is not personal"! I quickly and adamantly disagreed with this statement. As a parent, there is nothing more personal than inviting others into my home and my life to ask for their help in raising and educating my child... A job that is supposed to be mine but, perhaps, is one that I need help with as I am not totally prepared or knowledgable enough to undertake the special developmental and educational needs of the child I was gifted.

The Committee -- and, for that matter, the world -- needs to be a bit more understanding of the position we parents of children with special needs are in. I did not ask for my children to have special needs. But, I am embracing the role I now find myself in. I am working hard to grow my children into contributing and viable members of our society. This process is often difficult! No, I can't just let my infant fall asleep when he's tired. I have to get him to sleep and wake him up early or keep him awake despite his fatigue in order to accommodate his Early Intervention therapies that are scattered throughout every day of the work week... often into the evenings interfering with dinner and bath schedules (never mind the schedules of my "typical" children). I do not get to choose a preschool for my child based on program, cost, schedule and proximity to home. I have to go to a Committee who decides for me/with me. And, if it doesn't seem to be working out as I hoped for my child, I don't get to make the decision to pull my child from that school and enroll them elsewhere, I have to reconvene the Committee to make that decision lest I lose services. A time-consuming process at best. Every decision a parent of a child with special needs makes is made not alone, not just for today, but with a Committee and, to be honest, with every day for the rest of their lives in the back of their mind playing best- and worst-case scenarios for long-term outcomes. Yes, it is harder to raise a child with special needs. It's more work. But, it can also be incredibly rewarding.

It takes more effort to be successful and meet the same levels of achievement, if/as possible.
Parenting by Committee seems impersonal but it is not. It is VERY personal. As a matter of fact, I can think of nothing more personal in the world than having others help me parent my children! As a parent, and as part of a team, there is tremendous reward as milestones are achieved. But, as a parent, it is also occasionally humiliating and always humbling to be at the mercy of a Committee.

Thoughts for the next time you sit at that table -- no matter what your role there....

Friday, May 15, 2009

The Long Term Effects of Potty Training

Ever have an "aha!" moment that suddenly clarifies a perplexing problem? I recently had an epiphany like this during a potty-training seminar at my sons' school. No, this post is not technically about potty training... though I'm sure as I enter into that FINAL FRONTIER with the boys I'll be posting up a storm on the subject. THIS particular post is about a weird relationship I discovered during my potty-training learning process.

So there I am sitting in the conference room, blank page and pen ready to take notes on the brilliant methods and observations of the professionals as well as those of the parents who have gone before me. Halfway through the session and with great frustration a parent asks, "HOW? HOW do I get my child to sit on that little potty for 3 minutes while absolutely NOTHING interesting is going on?" I feel this mother's pain. My guys will give me a count of 10 on the pot.... barely! 3 minutes is a lifetime to them! So, the facilitator mentions that you need motivational rewards -- aka enticements -- that will encourage the child to attend longer. Or, more accurately, to distract the child from what he's really doing there just long enough to accidentally catch him in the act of doing it. So, the facilitator suggests that taking your child's favorite book into the bathroom and allowing him to read it, or to read it to him, ONLY while he sits on the potty and NEVER EVER anywhere else.... is certainly an enticement (versus a reward) for him to stay seated a bit longer.

Picture this, you take your diaper-dependent son to the bathroom, pants down, you sit him on the potty and let him read/look at his absolutely favorite book -- or better yet, you entertain him by reading to him from his favorite book -- as he sits patiently on the potty awaiting nature's call. When it does, you celebrate the moment and hope he connects the feeling of relieving himself with the praise he receives from you for doing so... if not with his regained freedom from potty-sitting. ("The sooner I do this, the sooner I can get out of here!")

This potty training method relies on the notion that once nature's door opens for him -- via emptied bowel and/or drained bladder -- while sitting there on his little potty, all the praise and applause he receives from you for being such a big boy will be rewarding enough to repeat the performance over and over again. Mostly true. Initially he will comply for your praise or for the freedom but ultimately he'll do it because it's the big boy thing to do. Or, maybe he does it for access to his favorite book??? I do not doubt that this method could work for some if not all diaper-dependent children who have their favorite book vanquished to the bathroom for training purposes.

BAM!!!! My epiphany came when I suddenly realized that this MUST be how the habit of reading on the throne as an adult becomes the time-consuming, hours-long habit for some people AND potentially a point of contention in 1-bathroom houses where other family members -- like wives and children -- might also wish to use the facilities. Now I know why! And, NOW I think I understand!

Do you know anybody whose mother must have used the "favorite-book" form of enticement for potty training?

Thursday, May 14, 2009

THANKFUL THURSDAY - Gratitude For The Little Things

St. Theresa is the Saint of Little Ways. I try hard to be very mindful of the little things that I am grateful for throughout the day. The "little ways" in life seem mostly to go my way in the normal course of things. It is surely this notion that affords me my "glass is half full" attitude. I am just as certain that when all the "little ways" seem to be going against me, I'd like to go back to bed and curl up under the covers and sleep it off until tomorrow when I can begin anew. Sadly, or maybe luckily, that's never an option.

There's an old Willie Nelson song that begins with all the "little ways" going wrong for him one morning. His alarm clock didn't ring. He's late for work. He spilled his coffee. Another bill came in the mail. When he finally gets to the chorus, the kicker is that the biggest thing didn't go his way either as he describes his lover leaving him. The song hits a chord with me because -- yeah, my hubby left this morning... He did, but only to go to work as he does every day (thankful for his job in these economic times). But, seriously, it seems on the days when it goes wrong, it ALL seems to go VERY wrong. But, when it's right -- the little ways and the big ones -- all seem to align and everything feels right. I am sooo thankful that mostly the little ways and big ways seem to go right for me most days... Truly! So, here's a show of my gratitude for the little ways:

[1] Thanks for all the cars in the left lane miraculously deciding to go straight this morning instead of waiting for on-coming traffic to clear to make their left turns. Otherwise, I'd have been stuck behind them for at least 2-3 traffic light cycles. Seems a little thing, right? But, at that moment, when I realized I couldn't get into the right lane and might be stuck in more traffic, already waaaaay too late getting the boys to school... You know I felt immensely grateful for that little miracle and actually said out loud, "Thank you God!"

[2] While I'm a bit ticked off that Miss Molly Box chewed the knobs off of the boys' Etch-a-Sketch AND chewed the boys' Home Depot tape measure to smithereens AND chewed the loose molding off the wall behind the front door... I'm thankful she didn't chew Olivia's beloved jean jacket up despite having pulled it down onto the ground and adding it to her newest pile of chew-booty! Olivia was already upset this morning when she realized that her European Biker Boots no longer fit her. She'd have been devastated if she lost the jean jacket in the same day. That's a big little thing for me to be grateful for.
[3] I'm thankful for the cup of diet hot chocolate I'm nursing right now as I type. It's a rainy and windy day and though it's 60 degrees, it doesn't feel like that in my soul... So, this hot cocoa is just hitting the warm spot and I'm really enjoying it!

[4] I'm thankful that it's raining today! That's an odd one for me, huh? Now the new grass seed I laid down the other day is being watered with no effort on my part. And, I can while away my time on the computer -- before my services are needed as a parent-member at the school district -- without feeling guilty about not getting out there and finishing the paver-in-sand patio I'm working on in the yard. Truth be told, my 46-year-old back and hands are a little sore today from the work I did yesterday.

[5] As you can gather from #4 above, I'm grateful for the rain taking over because I fall short when it comes to flora and fauna upkeep. I get it all in the ground but I've never been very good at consistently caring for my plants, flowers, grass or shrubs once they're down. Thankfully, most of the time they seem to thrive despite my shortcoming. I do so enjoy spending time in my perennial garden and I'm always pleasantly rewarded with peace and tranquility when I care for my green friends. Still, sustaining the consistent, daily effort in the face of conflicting needs and schedules has always been a problem for me. (I once had a garden center owner refuse to sell me flowers because I was honest with him about this.) I'm grateful that mother nature kicks in where my nature does not seem able.

Little ways that make my day, my life, my world a bit more pleasant. Note, it's not that all the little ways go my way or that some of the little ways don't go south some days -- like being late for school with the boys again, or Miss Molly Box's digressions, or the rain (as a tree-hugger, I'm always happier with sunshine) -- it's just that I really try to appreciate the little ways that DO go my way. I find that makes me happier and better able to overlook the little ways that don't. ;O)

Tuesday, May 12, 2009

Belated -- A Mother's Day Letter to My Children

A friend of mine wrote a love letter to her children, inspired by another mother who did the same... writing to a child who misbehaved and didn't listen well but who she loved just the same... Wishing to express her love, somehow, to her precious child. In turn, I was inspired to write my own love letter to my children... my very special and unique children.

To My Beautiful Children, Olivia, Brian and Michael:

It seems a million years ago! This gift that you've given me... that I could not have were it not for you. This life that I live now. It has always been. This love that I feel... It could not be, would not be, so fulfilling without you, my precious and perfectly imperfect children. And I am the ever more imperfect mother muddling through this crazy adventure, this wondrous adventure, one day at a time, one adventure after another, linked together with tears and laughter and love... always love! More love than I could ever have imagined.

The miracle of traits handed down that spring up like crocuses on the first warm day. Seeing again, often seeing for the first time, nature's miracles like budding acorns, the rainbow track of a slug with it's beautiful leopard stripes and spots. "Aren't slugs beautiful, Mommy?" I don't know if I ever felt the tickle of a snail crossing my palm or the flutter of a butterfly's wings on my face before you. Or, maybe I just didn't notice the way I do now... with you! I love watching wishies float away and the way you come running to show me your newest 4-leaf-clover. Watching you hesitantly feel each blade of grass on your tender feet and toes. Your toes, the big one spread delicately "too far apart from the others" they said. But they work perfectly, don't they? The line across each of your palms... each unique by hand and by child. You! To see the curve of each child's chin... 3 beautiful, unique chins that are so like my own. But, the curve of her full brow like Daddy's. The boys' brow like mine again. You talk all the time... me! But, use your hands and describe the tiniest details... Daddy! Who is the engineer... and the flirt! Who is the scientist... and the nature-lover! Who is the entertainer... and the romantic! You are all exactly what you are meant to be. And, you have made me what I am, what I am meant to be. Your Mom!

What amazing miracles occurred to bring you here to me! Every cell dividing just exactly as it was supposed to... despite the "mistakes"... because of the mistakes. I love you all the more because there is more of you to love! Those beautiful, miraculous mistakes, on the inside , on the outside, the ones God made for you, for us, and the ones you make for yourself. Who is always late? Who came 8 weeks early? Who will struggle to be on time? Who cares? And, who does not? Joy and pain, ease and struggle, intermingled in this beautiful life you've given me.

Black eyes, burned bellies, scraped knees, bloody lips, bruised bums... ER visits, hospital stays... all part of the pain of growing up. The pain of mothering. I am sorry I was not there to prevent it each time. But, I am and will always be here to comfort you and help get you through it.

Olivia -- Your birth is my strongest and most pride-filled moment bringing me a sense of me that had never existed before you and could never be matched again. And, unbelievably, it was just a brief prelude to this wondrous journey called motherhood. Your knowing eyes assure me. Your kind heart and loving nature warm me. Your interests -- dinosaurs, butterflies, snakes & alligators, kittens, birds, frogs, all creatures great and small, as they say -- and your command of language fully engage me daily. As you gallantly surpass each milestone, soaring beyond peaks I never even dreamed of, I am mesmerized by you... Truly you are the most amazing and fascinating person I know. You have an innate sense of sisterhood and empathy for every living thing that I hope someday to achieve myself. With each compliment you receive on your outer beauty, you humbly sparkle from the inside. Each beauty mark that emerges belying your inner beauty and mapping out your love of life, your laughter and your [6th] sense of just knowing. This is who you are... your core... your essence... This is what makes you YOU my beautiful Olivia! And, why I love you so.

Brian -- My Romeo. I do not know why giving birth to you and your little brother 8 weeks early was not so worrisome to me. Neither was the news that you were both blessed with an extra 21st chromosome. I guess, deep down, I knew all along that you would be fine. You were ready to grace me with your presence and that's why you broke the water and breathed on your own. I'm certain you knew I was in pain with all the pulled muscles, sprains and spasms in my body... And, you would never do anything to hurt me. You feel the pain and hurt of others so personally. Especially mine... I know. Your kindness, generosity and desire to share and make others feel loved is a gift from God. Such a wondrous gift... Your gift to me! From the soft fuzz on the back of your neck to the pink bottoms of your feet and everything in between... your pudgy-little thumbkins and that line -- the telltale line that shows itself on one hand but not the other -- that makes you one in a million. My one-of-two in a million... you and your brother. The sparkle of love in your eye ignites the sparkle of love in my heart. "Ohhhh, Mama" with an Indiana Jones kiss... just for me. Only for me. Forever for me!

Michael -- Such beauty! He resembles the face of God, my guardian angel. My engineer. You will fix everything. You have certainly fixed everything that was once amiss in my life. Your reluctance to be here early but finally adhering to your brother's wishes was a precursor of sorts. You are forever the cautious "twin". The one who holds back and says, "No Bri Bri!" But, that Hollywood smile belies your true nature, your desire to know how things work, to understand everything about everything. Your loving heart as you rain your gentle affection down on the cats and dogs -- especially Molly. She is truly your dog Michael! And, how you love her. Almost as much as you love to laugh. Constantly, you look for reasons and ways to encourage me, to entice you into a full belly laugh... over and over again. You desperately WANT me but you do not want me to know that you want me or, God forbid, that you need me or anyone, for that matter. You can do it all yourself. I know. How "me" you are! It is in your eyes. Those beautiful greenish-blue, ever-so-slightly almond eyes give you away. The thoughts you speak with them say it all. And, in our most intimate moments, you look deep into me, you smile for me, you snuggle up to me and we become one. That beautifully light peach fuzz at the top of your neck tickles my lips, I can see through your guise. I can see the person who loves to be loved. Who loves to be hugged and touched, played with and attended to despite your insistent independence. I can see through to a most amazing and intellectual little man contained in that precious 4-year-old body. My heart aches for my love of you!

How can I have been so lucky to be thrice blessed with these most amazing children? These most wondrous human beings entrusted to me... Put in my care by a God who knew that I could not help but love them fully just as they are. My heart aches and grows like a muscle torn and repaired, made stronger every day by the love Olivia and Brian and Michael give so easily and so unconditionally to me. Thank you GOD for these, the most beautiful gifts I will ever receive in my life. The beautiful little lives, hearts and souls of my three beautiful children!

Monday, May 11, 2009

Down Syndrome Awareness -- Another Resource For Information

I am an "evidenced-based" mom. That is, I want to know that what I'm trying is not so much experimental but achieves results based on some level of scientific evidence or proof. Some translate that to mean I am a doubting Thomas. But, I crave information and knowledge with regards to Down syndrome and how it MAY or may not affect my children. As such, I found an interesting blog and post-series -- "The Top 15 Things A New Parent Should Know About Down Syndrome" -- that I wanted to share.

I have found that, for me, the key to understanding and managing life with Down syndrome is knowledge. I seem to proactively gather the knowledge I need or crave as the issues and/or topics present themselves. And, I am always looking for new resources on my quest to understand and rise above. This seems like a great site to help expand my knowledge of the chromosomal anomaly we all know [and love] exponentially... covering topics that may never surface in my sons' lives but good-to-know information just the same. Whether you agree or disagree with the conclusions and/or treatments being recommended -- FYI - I find myself questioning both in many instances -- it is definitely food for thought and a jumping board for more research on my part. In just one day I have encountered a number of topics that certainly warrant a conversation -- maybe even testing -- with my pediatrician.

Take what you need/want and leave the rest. Live and let live. To each his own. All these mantras apply. But, I hope it helps someone, anyone, out there to better understand that, as the mothers of children with Down syndrome, we are the envelope-pushers for the future. Everything we do -- or do not do -- with and for our children will be examined by those that follow us... just as we seek information from those who proceeded us. I would like, for my children's sake and development, to be a good example in this.

Thursday, May 7, 2009


[1] I'm thankful for 2nd (3rd, 4th, 5th and 6th chances)! As many as it takes to get it right!

[2] I'm thankful for the gift of being able to bend over and tie my shoe without back pain, to be able to walk 2 steps never mind the 2 miles I've been walking with my sister each morning, and the ability to run -- even for a block and despite my advancing years -- without keeling over. LOL!

[3] I'm thankful that my daughter has embraced a love for nature, animals, flowers and the outdoors. It's something that I know will bring her peace throughout her life (because it does me). And, it's something we will always be able to share.

[4] I'm thankful to have enough surplus in my life to be able to throw a little party for the boys' birthday with good friends and loving family in attendance.

[5] I'm thankful I have a loving and non-critical husband.

But, mostly, right now, I'm thankful that I'm done posting so I can go to bed. 5:30AM comes quickly!

My Fall From Grace

Just when I was feeling just a little bit, kinda-sorta, almost good about my parenting - you know... doing the right thing; saving worms; walking the walk and talking the talk; even being chosen to receive a parent/caregiver award from the Long Island Speech and Hearing Association -- leave it to mother nature to knock me right off my self-appointed pedestal. Lest I get too cocky, the grand dame of God's green earth let me know in no uncertain terms that I am just another humble mother desperately paddling to keep my head above water... or my daughter's gold fish paddling below water. Key word... paddling... as opposed to belly up, that is! (Pic: Patrick)

Olivia rescued 2 comets about 6 months ago. Those are the $0.10 feeder gold fish you see thousands of in the 10 gallon tank at the pet store. The ones that the bigger, more-expensive, fancy fish eat for breakfast.... literally. The ones whose average lifespan is 2 days. So, Alex Rover (from "Nim's Island) and Mia (just a nice name for a fish) joined Patrick (from SpongeBob Squarepants) who was a "fancy goldfish" heldover from our original 3 gold fish -- 1 carnival comet and 2 fancy gold fish -- after two of them took an early trip to the happy fishing grounds. So, our newest happy trio spent their short lives in a 10-gallon tank on my kitchen counter. As such, they were very much a part of our daily lives and activities, present for breakfast, lunch and dinner every day.

Unfortunately, about 2 weeks ago, their world came splashing down around me. First, Olivia noticed that Patrick developed the telltale (or would that be telltail?) white spots on his tail fins. I treated with water changes and an aquarium antibiotic leftover from the last fish-killing infection we contracted to no avail. We lost Patrick and then Mia with barely an opportunity to intervene on their behalf. Olivia was sad but recouped admirably, counting on Alex Rover to carry on for his fallen comrades.

About a week later, Big Al, as I used to call him, developed the tiniest little spot on his tail. The size of a grain of salt! One tiny dot so small it was barely visible... but Olivia was on the lookout because of our recent losses. So very minor, or so it seemed at first, until Alex's fins began to clamp, then split as the white dots spread to his dorsal fin. I sent the hubby on an emergency run to the pet store for meds with a list of symptoms and my best-guess for what might be afflicting our last poor fishy. #1 on my list = the ICH! "Talk to the fish guy", I said. Despite the fish guy's agreement with my diagnosis, Daddy came home with meds for a secondary infection but not for Ich. I still don't know why the guy sold him what he did but after 24 hours it was clear we did not have the right product. So, we sent Daddy back the next evening for Ich-specific treatment. This time he came home fortified with salt and a huge bottle of RidIch and less-than-hopeful instructions for treatment. Per the directions, I tossed my biologically balanced but now ich-infected, bio-wheel in the trash with my carbon filter and each night for a week, as specified in the directions, I syphoned half the tank into the sink -- doing my best NOT to swallow the ich-tainted water -- replaced it with fresh, temperate water, treated it for metals and then added 5ml of RidIch, a deep blue stain/dye into the tank to kill the dreaded parasite. Each night, Alex Rover perked up, his fins unclamped and he stopped gasping for water. Each morning he hungrily finned at the surface for breakfast as he did every day of his previously healthy life and, eventually, the white spots vanished, his fin split healed and all fins were fanned. I was encouraged.

On day 8 -- DAY 8, for God's sake! -- I pushed Olivia through her nighttime routine as I do every night. I prepped the boys for bed as I do every night. I treated Miss Molly Box's dry eye condition as I do every night. And, finally, I happily headed for the stairs when I realized I hadn't treated Alex Rover. Mind you, the directions called for treatment to continue just 3 days past the disappearance of the last white spot. I felt confident that we'd gone 5 days past that milestone so I was technically "done" though, to be certain we'd killed the ich, I fully intended to continue indefinitely until I felt reasonably sure that Alex was here to stay. I checked on Alex. His fins were fully fanned. He was breathing easily and swimming about. "Do you think he'll be ok if I do the water change and treatment in the morning?" I asked my hubby who, with as much fish-sympathy as he could muster, casually responded, "I'm sure he'll be fine with that, Mag." Hesitantly, I nodded and spoke those regretful words, "God help me if that fish is dead in the morning!" In my wildest dreams, I didn't think that was a possibility given his healthy performance.

But, there I was at 6:00 AM the next morning, peering into the blue-tinted tank and Alex is laying belly-up at the bottom in his favorite corner... Darn it!!!!! I was DEVASTATED! My daughter took the bad news valiantly and we gave poor Alex a burial at sea. I still don't know why he bit the dust... or bit the gravel. I take no comfort in the fact that the fish guy told my husband that Alex probably wasn't going to make it.

I've continued well over a week's worth of Ich treatment because I read on the internet that the parasite can live on as long as a week waiting for another host. And, I'm not anxious to provide one! Olivia is anxious to save a few more comets but, to be honest, I'm a little ich-shy! I'm not sure I'm ready to commit to killing more gold fish... I mean saving more gold fish. And, though Olivia has assured me that our comets lived far longer with us than they would have otherwise (my explanation to her after we lost the final three), I'm not sure I can go through the daily life and death struggle when/if illness strikes. I think I need more time to get over it.

So, there you have it. As good a job as you think you might be doing on any given day, with parenting, you're never more than one gold fish away from total humility! It's amazing how much a ten cent fish has rocked my world!

Friday, May 1, 2009

Down Syndrome Awareness - Our Tonsillectomy/Adenoidectomy Outcome

I know I've posted some disjointed information regarding the boys' recent experience with their back-to-back intracapsular tonsillectomy/adenoidectomy surgeries. I've noticed some interest in my blogs traffic report and I've received questions from other parents -- whose children also happen to have Down syndrome and may suffer from obstructive sleep apnea -- about the process we went through of identifying the need, undergoing the surgery, surviving the recovery and, finally, the positive outcome we've experienced. As such, I thought I'd put it all down in writing here to serve as a point of reference for others.

Note: this documents our experience including the information I ferreted out on the internet; gathered from other mothers; received from medical personnel. This story specifically pertains to my boys' tonsils and adenoids, how my boys reacted to the surgery, their particular recoveries, setbacks and, finally, our impression of the outcome. You may or may not agree with the information I was given, get the same recommendation for your child, or have the same outcome. I am simply sharing the information as another point of reference for other parents going through it. It would have been less worry and research for me if someone had shared all this with me 2 years ago. Hopefully it helps.

After recognizing that the boys had unusually large tonsils, at age 2, I asked my pediatrician to refer us to a local Pediatric ENT. We visited the new doctor eyeballed their tonsils and told us that although their tonsils were a 3.5 and 4 on a scale of 1-4 (4 being the largest), he didn't do surgery on children before they were 3 because they were still growing and their tonsils may not grow with them. "Better to wait a year and see." At 3, I returned because we were experiencing sleeping difficulties and snoring AND their tonsils were still HUGE to my untrained eyes. Now, the Pediatric ENT said they rated a 3 and 3.5 (reversing the twins' charts... but that's a different problem). Once again he suggested we wait a year because, he said, they didn't like doing surgery on such young children. Additionally, the doctor quoted adult-level statistics on sleep apnea and stop-breathing indicating that if my children were not experiencing this level of sleep interruption, then surgery was not warranted. I said I didn't think my children were experiencing that adult-level of stop-breathing and apnea episodes. So, we left with a recommendation to, once again, wait another year and see if their tonsils shrunk or the apnea miraculously went away. Meanwhile, I knew that my children were losing sleep and suffering extended illnesses -- though not strep or tonsillitis -- due to their lack of sleep. I was worried about how this might affect them in the short- and long-term.

Dissatisfied with the doctor's answer for the 2nd year in a row, I decided to do a little research on my own. I discovered that there is an increased propensity for children with Down syndrome to suffer from obstructive sleep apnea (OSA) because their typically smaller-than-average oral cavities -- a common developmental side effect of DS -- crowded by over sized tonsils and adenoids often results in blockage of the already narrowed airway especially when the child is at rest in the prone position (laying on back) where the tongue would relax into the back of his/her small mouth and further prevent the passage of air into the lungs.

In asking other parents of children with Down syndrome about their specific experiences, I found that the majority had undergone the tonsillectomy/adenoidectomy surgery by the time they were 5-7 years of age (typically earlier) to prevent illness and/or to unblock the airway and relieve OSA symptoms. Some had endured the painstaking process of proving the need based on scientific sleep studies that did or did not support the OSA diagnoses because they're not really designed for children. Others had forgone the intrusive and time-consuming sleep studies either because their ENTs were familiar with the common issues faced by children with DS and accepted their description of the OSA-patterns or because they provided their ENTs with video tape evidence of the OSA-patterns. These patterns, which my children experienced, included frequent stop-breathing episodes that lasted 10-15 seconds and occurred sporadically and/or frequently throughout the night resulting in a deep sucking in of the abdomen and sudden gasping for air as well as frequently sleeping in the upright/sitting-up position, sleeping folded in half (sitting then falling forward), balled up on hands and knees, restless sleep, crawling all over the bed, propping themselves up against the headboard, footboard, me, my husband, pillows, bed rails etc. all in an effort to open the airway, breathe and stay asleep! To no avail!

In my ongoing research, I discovered that the full removal of tonsils in a child with a structurally different oral cavity (as is possible with DS) could result in the potential collapse of the soft pallate as the base and tonsil act as a sort of retaining wall for that structure. Though rare, collapse would mean extensive reconstructive surgery. Additionally, full removal could leave two gaping holes in the back of the mouth where ingested food could gather and spoil increasing the propensity for repetitive infection. Another possibility I wanted to avoid. On the flip side, not fully removing the tonsil -- a partial tonsillectomy -- could, though rarely, result in the tonsil growing back.

Reaching out further, I began asking other tri-state area mothers of children with Down syndrome who had already undergone the surgery for their stories and a referrals if it was a good experience; requesting the names and phone numbers of the medical professionals they used. Without exception, the mothers I spoke with noted that the Pediatric ENTs they visited had experience treating children with Down syndrome. I contacted one of these regional medical professionals asking for a recommendation for someone in their field experienced with children with Down syndrome that practiced closer to my home. I got 2 references, checked on availability and insurance and was dead-ended. But, I had received invaluable confirmation that, for a child with Down syndrome, the surgical procedure could be potentially different depending upon my children's specific and DS-related issues and oral cavity structure as determined during the first examination. I had to find a local Pediatric ENT who had specific experience working with children with Down syndrome.

At the boys' school, I asked a mother I knew whose child with special needs had recently gone through the procedure (though he did not have DS) and I cross referenced that with recommendations I received from a Developmental Pediatrician practicing in the same building complex as the boys school who was kind enough to speak with me briefly about our dilemma. Finally, I went back to my Pediatrician armed with extensive information and asked again for a referral to a Pediatric ENT, this time requesting specific experience working with children with Down syndrome. He gave me 2 names, one of whom was already on my short list. I called the doctor's office, confirmed that he accepted our insurance and made an appointment (or 2). I knew I had my man!

Our first visit was pleasant, quick and very educational, ending with my making two back-to-back appointments for their surgeries. The good doctor examined the boys' tonsils and adenoids using ENT tools of the trade (not eyeballing like the first doctor), asked pointed, quantifying questions about their sleep- and illness-patterns (how often/how long) and then explained that he could definitely help and would like to perform a less intrusive version of the typical removal of the tonsils and adenoids because of the boys' specific issues -- or lack thereof. The tonsils didn't really need to be removed as they were still working as germ filters as evidenced by the lack of strep and tonsillitis infections but the repeated long-lived illnesses were a function of their bodies' inability to heal quickly due to lack of sleep and ongoing fatigue. And, oddly [for a child with DS], their adenoids were of near normal size and would also not have to be removed. However, because of their small oral cavities and narrow airways , their significantly enlarged tonsils (all developmental side effects of Down syndrome) definitely presented an airway obstruction and the sleep patterns I described were consistent with obstructive sleep apnea. An intracapsular tonsillectomy/adenoidectomy is less intrusive and is said to be 90% less painful and an 80% quicker recovery. The procedure involved shaving -- rather than partially cutting or fully removing -- the protruding tonsils and any adenoidal bumps in the way leaving some remaining tonsils and nearly all of the adenoids to function as originally designed. This procedure would clear the airway resulting in significantly improved sleep... reducing fatigue and improving their overall health and vitality.

Our pre-op appointments were uneventful. The staff of the day-op center (non-hospital, outpatient surgical facility) were all friendly, informative and professional. We'd had an unpleasant first experience with anaesthesia during the boys' MRI's as infants. But, the day-op anaesthesiologist explained clearly how he would attend to their slower metabolic out-gassing of the drug (another potential side effect of DS) by giving a lesser dose through a breathing mask which would ensure only the minimum amount needed to keep them asleep during surgery and which would be removed immediately following the surgery, resulting in a much quicker wake-up. The day of our surgery we were prepared thanks to the explicit pre-op instructions we received. I changed my big little man into a miniature hospital gown and suited up in a paper suit to wait in the sterilized pre-op room while my husband waited no longer than a half hour with my littlest man in the waiting room. We were called to surgery quickly -- arriving at our operating room on a motorized Harley Davidson motorcycle. I laid my baby down, sat by his side, kissed him before the mask went on and within a minute and a half he was fast asleep and I was escorted back to the pre-op waiting area where I was met with my 2nd little patient. Within 45 minutes, the doctor/surgeon had finished with our first guy and I made the trip with my 2nd little boy to repeat the process. Within 2 hours from our names being called in the waiting room, we were in recovery with both boys awake and pleasantly-enough (read: not crying) watching "Dora the Explorer" on tv and eventually sipping apple juice. The surgeon came in excited to see the boys so alert as he explained that he was pleasantly surprised with how the procedure went. He was able to shave away more of the tonsil than he expected, further clearing the airway and leaving a much smaller tonsil base which required significantly less area to be cauterized (read: less pain). He provided us post-op instructions that were less restrictive than those for a full tonsillectomy/adenoidectomy and we were cleared to leave -- a mere 5 hours after arriving -- and were home 30 minutes ahead of schedule and ready to facilitate the boys' continued recovery.

The boys were pleasant enough as we fed them a soft diet of ice cream, pudding and yogurt at first then, finally, undercooked hot dogs and pizza because my meat-eating boys don't like pasta and refused absolutely everything else. We medicated the pain with Tylenol (note: research shows that children with DS may not express the pain they feel as accurately as those without DS and so, should be treated for the average pain for any given ailment as opposed to the pain expressed.) and we restricted our use of Tylenol with codeine to night time in order to avoid problems with constipation. Still, as each day passed, their temperament deteriorated, their fevers elevated and their liquid intake waned. By day 3, no longer willing to swallow and 4 days without a bowel movement, we found ourselves contemplating the necessity of an ER visit for rehydration. Finally, at 9PM that night we were advised by the surgeon on call to take the boys to the ER to receive IV fluids. After 3 and 4 brutal IV picks respectively, the boys finally settled down to receive their fluids, sound asleep. Unfortunately, due process in the ER is to perform a chest x-ray if a child comes in with a fever. Despite my best efforts to dissuade them from waking them again and explaining that the fever was an after-effect of the surgery, the tech arrived to take them away for x-rays.... Thankfully. Our first chest x-ray came back positive for pneumonia and the second came back negative. Daddy got to take our littlest guy home to sleep at 4AM while Mom and the big guy checked in for a 3-day stay of rehydration and antibiotics to clear his lungs. When his highest fevers receded and his blood oxygenation leveled off at 96, even during sleep -- proof that the surgery was successful in clearing his airway -- we were released to go home despite NOT meeting the discharge requirements of fever-free and drinking on our own. The next few days were still touch and go as I forced 5ml of Gatorade down his throat every 20 minutes of every waking hour to avoid dehydration -- a hint I wish I'd received on discharge from the day-op center.

Finally, a full 14 days after surgery, both guys were drinking on their own and regularly exceeding 2 wet diapers per 24 hour period... They were sufficiently hydrated and BREATHING freely at night.

Though their sleep is still a bit restless, tossing about, they do not stop-breathe, they rarely sit up or sleep folded in half and they actually do manage to stay asleep through the night without snoring or any significant wake-ups. I can't say the same for me as I wake up just to make sure they're still breathing... I'm not used to the quiet. My husband and I both find them to be happier, falling to sleep and waking up easier and faster, and speaking much more frequently and much more clearly than before the surgery. Their teachers and therapists have reported similar results, noting that they are following routines with less or no redirection needed, often skipping nap time or falling/staying asleep more easily than before, talking and participating more fully in classroom and therapy activities with improved attention and clarity all around. These are the amazing results our wonderful Pediatric ENT (who has experience treating children with Down syndrome) promised us before and after the surgeries.

I just love a happy ending. Don't you?