Saturday, October 30, 2010

Down Syndrome Awareness: New Special Needs Blog & Post -- Inclusion, Kindergarten & Compromise!

Did I mention that I've been invited to contribute to a new blog called Living With Special Needs?  I have but less often than I want and need to.  You can find me writing there up to two times a month along with a host of other bloggers for special needs.  Definitely worth a visit.  There's something for everyone living with special needs.

Here's my latest post on Inclusion, Kindergarten & Compromise!

Wednesday, October 27, 2010

Down Syndrome Awareness -- Be The Change!

There's something I want each and every one of you to ponder and get back to me with your ideas and thoughts.  This past weekend my family and I participated in the Long Island Buddy Walk at Heckscher Park in Suffolk County, NY.  It was a beautiful day and there was a decent turn-out for the walk sponsored by Alexander's Angels.... But something was niggling at the back of my brain. 

I couldn't help but wonder how an event like this raises awareness of Down syndrome in our society.  Yes, the money raised goes to organizations like the National Down Syndrome Society and the Down Syndrome Advocacy Foundation among others that do a phenomenal job of getting the word out and supporting inclusion efforts that expose the masses without DS to individuals with DS.  BUT, I have found personally that the most effective tool for raising awareness and acceptance in society at large -- thereby increasing opportunity for all -- is through exposure to people who have Down syndrome in the communities where they live, go to school and work.

If you want to change some one's antiquated thinking about what's possible for a person with Down syndrome to achieve, all you really have to do is to introduce them to and have them spend time with a person with Down syndrome... or two... or 200... and more.  Over and over again.

Buddy Walks are held across the country and are attended, mostly, by the family and friends of people with Down syndrome.... All of whom are already aware of Down syndrome, have experienced the amazing things that people with Down syndrome are capable of achieving and know, personally, what people with Down syndrome give back to the world through their very presence. In this sense, it's a sort of segregated event.  At the very least, it's fair to say these events are NOT attended by OTHER people who have not yet been touched by Down syndrome, and who really need to know what we families and friends already KNOW!

Reach Farther

As a kid, every year for as long as I can remember, I participated in the 20-mile March of Dimes Walk-A-Thon.  Yet, I have no birth defects -- nor do the friends and family who walked with me.  Yet, there we all were, walking, raising awareness along with the thousands of others who walked... and we were learning, ourselves, about birth defects and what the March of Dimes was doing to help.  How can we do that in the Down syndrome community?  How can we make the Buddy Walk an integrated event where people with DS walk side-by-side with thousands of people who do not have DS, through the very communities we share.  In the very communities we are trying to raise awareness and foster greater acceptance!  How do we grow these local Buddy Walks into events that people not-yet-touched by a person with Down syndrome are compelled to participate in? If we can just get them to show up, we can teach them so much... through exposure to people with Down syndrome. 

Exposure breeds acceptance and acceptance breeds inclusion.

We need greater visibility with the people who live and work in our communities who have not yet been touched by a person with Down syndrome.

Let me start you off with a few ideas... Maybe the sponsoring organization can run a 5K side-by-side with the Buddy Walk to attract the thousands of runners that are always looking for the next charity race to run but who might not otherwise come out for a Down Syndrome Buddy Walk.  Then Buddy each runner with a walker with Down Syndrome so their number is accompanied by a picture and profile of someone with Down syndrome.  Let's make it personal!  Or, how about holding the walk in a shopping mall (inside or in the parking lot) where mall "walk-ins" gain exposure to this wondrous population and can participate in the festivities and learn. Exposure of people with Down syndrome to store personnel increases employment opportunities in our communities while these businesses can help sponsor the event by offering discounts and/or a percentage of sales to support the cause.  The NYC Buddy Walk included live music -- Actor Chris Burke (DS) and his band -- and carnival-like games and activities where members of the community who were just passing through Central Park were hooked by the festivities and inadvertently mixed with the Down syndrome community... and learnedThat's increasing awareness and still raises money and supports the advocacy organizations of choice.

Come on folks.... Put on your thinking caps and let's hear it!  I want all your crazy ideas so I can pass them on to the powers that be here on Long Island.  I'll compile them and publish them and we can each start a grass roots effort to affect greater awareness of and greater exposure to people with Down syndrome in our home communities.  Much greater!  And, if the folks in charge are not willing to listen and grow, then we'll have to do it ourselves.  Each of us parents and friends of people with Down syndrome need to become the catalyst that brings greater awareness and acceptance of all people with Down syndrome in our communities.  And in every community across the United States and throughout the world.  It starts with one parent, with one new idea implemented at the local level and it grows until the CHANGE we're looking for is realized worldwide -- to the benefit of our children with Down syndrome as well as to the people they touch.

"You must be the change you wish to see in the world." - Mahatma Gandhi

Sunday, October 24, 2010

Down Syndrome Awareness -- The Dreaded R Word Spoken In My Very Own Home

NOTE:  Sorry I've been incommunicado in the midst of the 31 for 21 Down Syndrome Awareness Month.  But, as Kimba says over at A Soft Place, sometimes it's OK to reprioritize and put the people who matter most in our lives at the top of our priority list.  I've started TWO new part-time jobs this past week  (which I'll tell you all about another time) and my "free" time has all but disappeared so I've had to reprioritize.  I can't promise a post a day because of all these changes but I'll do what I can. 

The Boys' Birth Day story I promised is coming and it's so long it could probably be broken out into 31 posts all by itself.   But first, something incredibly embarrassing and real happened to me just last night that I HAVE to share!  

Right now, I owe you all a heartfelt apology!


As a busy two weeks of work seized me, I failed to get birthday party invitations out for my daughter's 9th birthday which has been on my calendar for many months but not on anyone else's. With such short notice, many of our intended guests couldn't make it so we pushed it out until next Saturday.  But, our favorite family of snowbirds are beginning their southward migration today (the day after the party) and we didn't want to miss the opportunity to get together with them one last time. 

So, we planned a tiny little gathering with this family and another to share the day and say goodbye.  At the end of a wonderful and relaxing celebration, during the long-goodbyes that always mark a fun time shared with good friends, the children began demonstrating their best wiggle-walk, while we adults bid our farewells intermittently engaged in conversation about the odd stride runway models use as they come down the catwalk.  The kids imitated smooth gliding wiggles to lots of giggles and that's when it happened...  I said it, "It's not smooth like that.  It's [instantaneously picturing the weird stepping pattern the models use] retarded.

For a split second, the whole room was frozen in SHOCK -- I was in shock -- and then a cacaphony of gasps was heard!!!! Seriously.  I don't know how that word came out of my brain let alone out of my mouth!  And YES -- my dearest friends APPROPRIATELY AND IMMEDIATELY called me on it!  ALL fingers pointing at me.  My friends and their children all yelling at ME and saying, "HUH!!!! YOU SAID IT!"  Of course, being our close friends they've spent time attending to and changing their vocabulary as necessary and teaching their children not to use the R word for all the reasons we parents of children with special needs give everyone for not using it. The other family present that was sharing this special day with us are long-time, dear friends of ours as well... Who also happen to have a child with special needs.  And they too, called me on it.  Just as shocked by my use as I was!  My husband was stood silent.  Yes, equally shocked because in the fifteen years he's known me, he's never ever heard that word pass through my lips except in relation to the recent Ban The R Word campaign.  And, I can tell you in all honesty, until last night, I NEVER used that word before.  I never even think it!  I didn't ever use it as a kid having been taught early on about the hurtfullness of name calling and being exposed early to people with special needs. I had good friends with special needs. I was a companion to a young man with special needs.  I knew their innate intelligence and I fought, even as a mere child myself, for their rights to be included in the world... just like everyone else.  And, I NEVER EVER used the R word.  Not as a child and not as an adult.  Not before and not after my beautiful children were born with an extra 21st chromosome.  It NEVER slipped from my mouth!  EVER!   Until last night!  I can honestly say, I don't know where it came from in my brain.  And, I'm embarrassed, MORTIFIED actually, that I said it last night. 

I won't make excuses like Jennifer Anniston.  I can't say it happened because I was overly tired and under a lot of stress (any more than I typically am).  I am all of those but that's no excuse for her or for me! But I can say that when I wanted to describe the strange way these skeletal women walked down the runway with their stilted and unnatural gait, that's the word my brain chose.  It was just there in a split second.  Just EXACTLY the way I HATE to hear it used...  Unfavorably comparing someone "typical" to someone with intellectual challenges.  I am being honest here.  I AM MORTIFIED that I used it!  And the only explanation I can come up with is that all the writing and conversations and constant talk about NOT using the R word actually put the word into my brain's bank of words available for use... a place it had NEVER been before.

In a long-ago post, I'd written about rarely ever hearing that word in polite conversation because the people who speak that way would not be in my circle of friends and family.  So, never hearing it being used, meant it wasn't a choice in my brain.  There are lots of words I don't like and don't use.  Words I rarely if ever hear because the folks around me don't use them either.  Otherwise, they wouldn't be around me.  But, with the worldwide campaign, the R word has become a regular topic of conversation in my world and, because of what happened last night, I'm not sure that's necessarily good. 

In trying to understand my incredible gaff, I've decided that perhaps it's similar to the argument made against violence on television and in video games which says that if you see it and hear it on a regular basis, it becomes part of your available-for-use repertoire.  And this is exactly why I totally agree that the R word should be banished from all written and spoken use.  And, this is why I'm RE-taking the pledge to ban the R word from MY vocabulary.  The first time I took the pledge, I thought, "This'll be easy.  I NEVER use that word!"  But I hear it more now than I ever have in my life and so, I guess, when push came to shove, there it was coming out of my own mouth!  Well THIS time, I'm taking the pledge to not EVER say the R word again!  I'm not going to speak it or write it! It's GONE from my vocabulary! I'm forever BANNING THE R WORD from existence in my brain so it never has the opportunity to slip from my mouth again! 

I recently wrote about not calling someone on their use of the R word.  Well, I've called MYSELF out very publicly here.  I do not want you all to think I'm a  hypocrite.  I'm human and I made a mistake that I'm trying to understand so it NEVER happens again!  I offer you each a personal and heartfelt apology for using the word in such a disparaging way.  I meant no harm to you or insult to your children but I know that's exactly what I've done.  Harmed and insulted!  I slid down the slippery slope and now I need to make the slow and embarrassing climb back up into the good graces of polite society.  I was wrong and I pledge to each of you, I will NOT do it again.  EVER!

Saturday, October 16, 2010

Down Syndrome Awareness -- A Second Child and Then Some

THIS story, the one I'm about to share, chronicles the wave of emotions I FELT about the miraculous little babies that came to grace my life forever just five short years ago.  It's an honest account of a string of difficult days that ran together during a very emotional time in my life... my pregnancy with The Boys.  There was no Down syndrome to consider at that time.  That didn't come until much later.  Just the existence of 2 Beautiful Babies who turned my world upside down in so many ways.  And then turned it back, right side up, on me.  It's about how they came to be culminating with their first day on earth, outside of their mama's womb. It's an emotional account, not a list of historical facts -- though they're here too.  Because the development of a life (or 2) is an emotional roller coaster. The birth of a child (or 2) grants us mothers an active role in helping God perform his greatest miracle.  It's an experience that rocked me to the very core of my soul.  And the little details -- a second fetus, a not-quite-right measurement, a shadow on a sonogram, a line across the palm, an extra chromosome --sent my emotions soaring in directions where miracles are sometimes forgotten. 

I knew I wanted a second child -- it's what the Sarge and I always talked about -- but I thought I'd check in with the Sarge, to give him the option to stick with the one child we had... or go for the sibling we'd always dreamed of.  The house is a wreck -- in mid-construction.  And, I think I'm OK with stopping if he wants to.  After all, we're in this together... though secretly I want him to say let's go for it.  No sooner do I hear the magic words than I'm elated to be expecting my second child. Humorous thoughts of my oldest sister and how quickly she conceived dance merrily in my head.  Honestly, I'm relieved that it happened so quickly...  And just a little bit concerned that it happened so quickly.  After all, I want JUST ONE MORE child to complete my family and being so fertile at this point in my life is a bit scary if you catch my drift.  Note to self: ask the OB/GYN at our first visit about really reliable birth control.  I can't have this happen again at my age.

I've brought Grandpa along to watch My Old Soul while the midwife confirms what the dipstick has already revealed.  As I sit waiting, gown cinched modestly under under my butt that hasn't started expanding yet from pregnancy.  I'm swinging my legs and disinterestedly perusing the assorted posters that adorn the walls of the examining room. I'm happily pregnant!  I come across one that depicts the bi-weekly growth of a developing fetus.  As I examine the 8-week picture, an asterisk notes that the second dark spot in the photo is a cyst.  I pay no mind as the door swings open and Betsy, the midwife who delivered the Old soul, enters with a smile.  I'm excited because I know that seeing the peanut baby that's growing in me for the very first time makes it real.  She waves the magic wand over my belly and shows me the baby... Yes, it's real.  Then I see the dark spot and a wave of fear grips me. It's an ovarian cyst just like on the poster!  OMG, will it endanger my new baby?  But before the thought has time to morph into words Betsy says, "and there's the other baby!"

WHAT?  NO!  She's talking but it is not really registering.  It's no longer about me.  It's more like a passing conversation with a stranger.  She continues waving her magic wand.  But she can't make it go away. She rambles on, "Do twins run in your family? They look good and healthy.  Both measuring right about 8 weeks.  Perfect!   They're in two separate sacs. That's good."  Oh, I think, and manage to choke the words out of my still-in-shock brain, "then they're fraternal?" Not necessarily! She explains that 2% of identical twins split in the fallopian tube and attach to the uterus wall independent of each other, in their own sacs.  Their development is healthier this way because they're not competing for the single food source provided by one sac.  We won't know for sure until they're born whether they're identical or fraternal.  She knows me.  She knows I won't find out my baby's gender.... correction: my babies' genders until their birth.  Oh my God...  Twins! 

[When I was a little girl, I thought having twins would be cool.  As an adult and mother of one, I flip flopped on that and felt strongly that one baby at a time was more than a grateful mother could ask for.  Not twins!  Please, not twins!]

I'm laughing with Betsy, explaining there's only one set of distant identical twins in my mother's family.  But it's a detached social laugh that has a tinge more worry than sincerity.  I hope she doesn't notice. 

In the waiting room, feigning my own excitement, I tell My Old Soul who is beyond excited...  And I tell my father.  It's appropriate that he's the first to know.... again.  He was the first to know when we were expecting our beautiful daughter - a hint whispered in an airplane over the Atlantic Ocean on my way to fulfilling a childhood promise I made to him to take him to Ireland one day.  HE laughs heartily while I'm still in shock... at me being in shock. " It's just that you plan for everything and this was totally off your radar!" I show the oldest and youngest members of my extended family the sonogram picture... My Old Soul counts as she points to the floating peanuts "one, two!"  To me, they look like enemy submarines honing in on their target on an under water sonar.  I can almost hear the beep beep beep while my daughter's and father's voices seep into my brain from afar.

Not twins!  Just one.  I want just one.  I don't want three children.  Everyone complains about 3.  3 is too many!  Just then I recall my sister's concept of being earth conscious by just replacing oneself and one's husband... having just 2 children.  Too late for that, I think!  I drift, like it's not happening to me.  I'm in a place I'm not familiar with.  I've seen others here but "whoa is me" is NOT my style... Yet here I am.

Over the course of the next few weeks, as I tell people that we're expecting twins, I feel only as if I'm trying on a shirt I didn't really like when I saw it hanging on the rack.  As if I can take it off and put it back if it doesn't fit me in the Try-on Room.  At this moment, when I look in the mirror, twins don't fit me.  I read about the disappearing twin syndrome and think maybe that will happen to me through no fault of my own.  I'm guilt-ridden for thinking it but I don't want to do this.  I don't WANTto have twins now.  I want just one baby, two total.  Outwardly, I joke with folks congratulating me, "I always said I wanted 2!  Perhaps I should have specified two babies not two pregnancies!" LOL... but I'm not laughing on the inside.  I find myself feeling devastated while all sorts of women confess to me that they always wanted twins.  And I think I used to be one of them...  but not anymore.  I see a neighbor and I tell her.  She must see it in my eyes, the pain and confusion I'm feeling.  She responds with the most honest words I'd heard in 2 weeks, "Oh you poor thing!" and I start to cry.  THAT'S  how I'm feeling!  How am I going to DO this?  I work full-time.  I already have a 3-year-old.  My home is under massive construction.  One baby!  ONE Baby! ONE BABY!

At 10 weeks, on a crisp Autumn day, I'm working outside in the yard when I feel that telltale gush of blood that every woman knows too well.  Only I'm pregnant and I'm not supposed to be feeling that for another 8 months.  Once again fear grips me.  But this time it's more tangible.  Please GOD, don't let me lose these babies.  For the very first time since the news that I'm carrying twins I realize I DESPERATELY want my babies to survive.  I want my twins!

I'm still bleeding when Betsy tells me that my uterus is like a knitted sweater with a hole in it and it is unraveling. Bedrest is the only treatment.  My body needs to mend the hole or I'll lose the babies to spontaneous abortion.  Suddenly, it's all I can think of.  I need to rest... but I have a 3 1/2 year old and she doesn't understand so I split my time as my soul feels torn in two.  Save the babies developing in my body.  Live for the one I have standing, smiling in front of me.  Weeks pass and I bleed intermittently.  I'm feeling good and bad.  Worried and content.  I'm having twins and I'm OK with it now.  More than OK.  I desperately want them... my beautiful babies.

I've stopped working on the house and the construction comes to a grinding halt.  I've stopped exercising as my belly grows... explodes with twins!  I've stopped almost everything by the time the bleeding finally stops after nearly 8 weeks. FINALLY!  It's my time to enjoy the miracle.  I LOVED being pregnant with the Old Soul.  But this has been so emotionally challenging already!  So fraught with ups and downs.  I'm looking forward to relaxing.  Enjoying.  Breathing.  It's January and  I'm barely 5 months pregnant.  Good news, I've stopped bleeding!

I'm beginning to let myself guess at what my future might hold.  We're discussing names.  Two boy names, two girl names, one middle name.  But they all have to go together somehow. With the Old Soul, we knew her name before the Sarge and I even married.  At her birth, we had no boy names and thought we'd look foolish if she was a boy.  She wasn't.  This time, we have 2 boy names but can't settle on the girl names. We need 2 that go together and one that goes with one of our boy names.  I'm anticipating a boy and a girl but the names don't seem to fit.  When I put them together, there's always something not-quite-right.  Then the sonographer notices an anomaly.  Something not quite right with the babies' brains.   My fear returns.  It's another sweater unraveling but I don't know how or why.

Test after test shows the same thing. We measure over and over again and the left ventrical is enlarged. Growing. Potential diagnoses are bantered about like wild accusations. Like I've done something to make this happen.  I secretly wonder if it's those first two weeks when I wished one of my babies would disappear. I want them and now the universe won't let me have them. Punishment. I'm overwhelmed and underwhelmed by each diagnosis.  Specialists are rushing the same results to me over and over again. Enlarged. ENLArged. ENLARGED.  I have a choice.  I don't take the out.  There is no out for me.  Sarge and I pursued this pregnancy purposefully.  I fought an emotional war with myself early on to get to this point.  I WANT these babies.  There is no going back.  I want them.  I WANT them.  Then someone sees white spots on their brains.  "Calcification.  Hardening.  It's a virus.  They're dying.  They'll be dead at birth. Stillborn.  If not, it will be a painful life followed by a quick death for them. They'll live a very short life as vegetables.  It's viral infections in their brains!"  More tests but I know -- I KNOW like a mother knows -- that I don't have the viruses they're talking about.  I KNOW it.  Still, they all tell me there's something wrong.  Something dreadfully wrong. All but one,  who whispers that she doesn't see what they see.  I cry.  A LOT! I sit quietly tucked inside myself at big family gatherings. Someone yells at me so I leave.  I don't care what she's talking about.  She doesn't care that my babies might be dying inside me.  I can't think let alone deal with the petty emotions she's feeling..  I am all alone as I take in one bad diagnosis, one bad guess, after another.  "Cyto-Megalo Virus.  Toxoplasmosis.  Microcephaly.  Hydrocephaly".  There's a shadow, a hole, in one baby's heart. It's a marker for Down syndrome.  Our first and only!  Two weeks later it's gone, just like our favorite sonographer, my one ray of hope, said it would be.  "These things have a way of resolving themselves" she said. The measurements of their brains, the disparity between right and left ventricals grows.  I take care of my sweet Old Soul and go through the motions. With conviction, I tell the medical profession en masse; that it is what it is meant to be and I quietly try to convince myself of the same as I feel the sweater unraveling.  Whatever happens, it's God's will.  I know that I have no control.  Except for the decision to continue the pregnancy, I relinquish all control. 

They are real to me now.  I can feel the babies kicking.  They roll like waves across my belly.  It's as if they are wrestling over a tiny blanket they might someday share in a bed.  When I sleep, they play but I've stopped playing.  My faithful old body is giving out. In the pool of diagnoses, my body is contributing it's own.  Torn rib muscles from a hacking seasonal cough and sprained back muscles that begin to spasm all from carrying the weight of twins.  The orthopaedist prescribes a belt that lifts the weight off of my back and puts it on my shoulders.  My shoulder muscles are sprained now too.   I feel like any effort is futile so I do nothing.  I'm in more physical pain than I was when I naturally delivered the Old Soul without an ounce of pain medication.  When I'm not sitting on the couch, I'm blindly, painfully going through the motions.  Yes, doctor. Yes doctor.  Yes doctor. One tells me to get off my feet.  Lay down with my feet raised to keep the swelling down in my ankles.  The next tells me to sleep sitting up to keep the strain off of my back and the pressure off of the babies.  Every other night I sleep the way each one wants me to.  Every other night I pray and cry, asking that my babies be spared all these terrible things the multitude of medical professionals have predicted. One Perinatal Specialist says I'm making the right decision.  He says that we're in a unique place in medicine just now.  A period when medical technology has surpassed medical knowledge and they are all just making their best educated guesses at what it may mean.  I think, they don't really know any more than me.

In the midst of feeling utterly lost at sea, The Sarge and I get our first hint that the babies might be identical.  Why else would they both have an enlarged left lateral ventrical?  This is the only explanation we can come up with...  But now I feel sad that I might be carrying identical twins that will not survive their own birth.  I share these words with the people I love and who I know love me but I carry the burden and the weight of them all by myself... deep in my heart.

I am 32 weeks pregnant with twins.  I survived the twin shock that gripped me heartily those first two weeks.  I weathered a ruptured subdural hematoma that threatened to unravel and spontaneously abort them.  I managed to get the doctors to stop testing me and to prepare for whatever might happen at their birth.  I can hardly walk, sit or stand without excruciating pain.  I'm huge.  HUge.  HUGE!  And I have 8 weeks -- the growth weeks -- left to go.  The left side of their brains are still enlarged and I'm still told there's a viral infection causing hardening of the brain tissue.  Otherwise, "the babies look good".  They're growing steadily.  Measurements are consistent with 32 weeks.  We're moving right along... But then they're not.  They stop moving.

I haven't felt them move in two days.  I can't help but wonder if this is it. The end the doctors had warned me about. Still born!  I've heard stories about women having to carry and birth their dead babies.  I hope this doesn't happen to me.  I successfully convince myself that maybe it's just too tight in there. Everything is OK.  I can barely move myself, how could they possibly move when they're all scrunched up in there? I tell Sarge I'll call the doctor in the morning but the Old Soul's nighttime potty routine overlaps with mine and together we see that I am bleeding again.  Spotting. 

Betsy casually tells me to go into the emergency room and get on a fetal monitor to make sure the baby's aren't in distress. I hear the nervousness in her voice and I'm sure she's trying to hide it from me. I've already been through the ringer so it barely registers.  I know I should have felt that old familiar fear but I don't.  I feel calm.  I reassure the Old Soul that everything will be fine.  Don't worry!  Daddy will stay with you.  It's bedtime!  I'll go to the hospital myself and be home in an hour.  I've convinced myself -- with no assistance from the medical community whatsoever -- that it's nothing.  Just pressure from carrying twins who are pushing at the gate. On the way to the hospital, I call my mother just to let her know that if I'm wrong, we may need her help tonight.  I tell her I'm OK.  Really!  I just might need someone to watch over my Old Soul in my absence... If Daddy needs to come be with me. If it happens, I think, it will be the first time in her short life that I'm not there for her.... But it will not be the last!

Their BIRTH Day to come...

Friday, October 15, 2010

Down Syndrome Awareness -- A Person's Worth

A person's worth is not determined by their position, wealth or IQ score
but rather by the profound impact he has on those around him...

...and on humankind!

This is true for those of us with 46 chromosomes...
 as much as it is for those with 47!

Wednesday, October 13, 2010

Down Syndrome Awareness -- Prevention?

(Republished from an earlier post written before anyone knew that Take a Walk on The Happy Side existed.)

We are all inundated by telemarketers with requests from various organizations fundraising on behalf of their worthy cause. Funds collected are then spent on various efforts to raise awareness; to advocate on behalf of those afflicted; and to conduct research to better understand, treat, cure and, ultimately, prevent the disease in question. Like most, I give what I can to the causes that I believe in and to the organizations that I trust.

However, I recently found myself troubled by something pertaining to fundraising on behalf of people with Down syndrome. As I mentioned above, research generally includes scientific understanding of the causes and effects of the disease or disorder, with an eye toward treating and curing those afflicted and, ultimately, to preventing the disease or disorder in question from occurring in the future. That said, the question that troubled me is this: what is the ultimate goal of Down syndrome research? I am absolutely in support of a deeper scientific understanding of the causes and effects of DS. I am absolutely in support of researching better treatments, and ultimately cures, for the negative symptoms or health issues that people with DS may experience. I suppose, curing a person with Down syndrome would mean being able to remove the extra chromosomal material from any and/or every cell in a persons body before it has any negative affect, or reversing the negative affect that extra chromosomal materials has on the individual.

But, here's the part that bothers me a bit... Tell me, what does it mean to prevent Down syndrome? To keep it from ever occuring would require knowledge of exactly where and when that first accidental over-duplication of the 21st chromosome happens so that you can undo the mistake and then allow normal duplication and development to continue without further interference thus avoiding the development of an individual with Down syndrome.  That would be extraordiary, wouldn't it?  But I suppose knowing that would be like knowing exactly when one cell splits and becomes identical twins.  I'm as amazed as the next guy over the incredible leaps and bounds science is making every day but we're not there yet.  And, I'm not sure we'll ever get to what I've just described. Which is just fine with me. The even more bothersome side of preventative research might mean that we find a way to detect the 21st chromosome over-duplication error in days-old fertilized eggs or fetuses and terminate the development* to prevent them from becoming a person with Down syndrome. As it is, statistics site that 92% of all fetuses diagnosed with Down syndrome are terminated.  And, yet, Down syndrome continues to exist.

But, let's say we succeed in preventing Down syndrome this way.  Eventually, people like my beautiful Little Men would no longer exist in this world. I simply cannot imagine how our world could be a better place without the likes of my children. My Boys and all people with Down syndrome teach us so much about acceptance of human differences that extend so far beyond this one affliction.  My Boys help me to focus on my blessings.

I'm not suggesting we don't do the research. I'm just pointing out a troubling science-gone-bad angle.  Troubling for me anyway.  But then, maybe you'd have to know My Boys -- or someone else with Down syndrome -- to really understand my trepidation.

Would the world be a better place if people with Down syndrome no longer existed? 

* Note: I am not arguing for or against abortion rights. That is an individual issue and choice. I am just making an observation as it relates to the ongoing existence of people with Down syndrome.

Monday, October 11, 2010

Down Syndrome Awareness -- Lessons In Advocating For My Children With Special Needs

We learn so much in school from our friends as much as our teachers. So much more than just academics.  Meeting up with my old high school chums again afforded me a few new observations pertaining to advocacy: 

Advocacy Lesson #1:  A few of my friends called yesterday, after reading my post, asking if they were the ones who slipped up using the R word. They were NOT the ones... But Holy Cow I'm touched and impressed by the fact that you cared enough to call and apologize just in case it was you! Interestingly, the actual folks who spoke the dreaded R word to me did not comment, send a message or call!  Perhaps they didn't see themselves in the story, were embarrassed, insulted OR, since I recognize that my blog's not the daily news, I guess it's possible they missed my post (though so many of my classmates were on FB looking for pics of the event).

Suffice it to say that this was a most interesting advocacy lesson for me and I wanted to share it with you all.  Though I believe my post reached a few more people (other than the culprits), making them think about their choice of words and how they might have offended the likes of me (NOT an easy thing to do as I'm SO not easily offended!  And, in truth, I was less offended than surprised when I heard the R word used!)  The thing is, it appears I failed to reach those who actually used the R word.  That, in itself, is catalyst enough for me to make sure that, in the future, correcting the gaff in real time is key to stopping the use of this derogatory word that fills the hearts of so many parents of children with cognitive disabilities with dread.

Advocacy Lesson #2:  It was so nice not to have to explain myself and the gory details of my life to every other person I met [again] after 30 years.  Sometimes I get tired of hearing the gasps and the "I'm so sorry" comments that often come along with letting people know that My Boys have Down syndrome.  Once I get that reaction I HAVE to go into advocacy mode and explain... It is NOTHING to be sorry about.  I'm NOT!  I love the living daylights out of My Boys and my daughter just exactly the way they are.  I'm a better person for having these beautiful children in my life.  And, hopefully, when I'm gone, I'll have made a difference in educating a few people about what it really means to love and live in this world with someone who has Down syndrome.  Yes, when the conversation turns naturally to it, I openly discuss the fact that My Boys have Down syndrome.  No, I never hide it.  Why would I want to hide anything about my absolutely amazing little boys?  I take every opportunity to advocate for my children, exposing others to the real face of Down syndrome versus some blatantly incorrect and outdated text book version they might have learned years ago.  I can't help myself.  THIS is my life. This is THEIR life! Advocating makes it better for everyone.  So when the conversation turns to it, I willingly step up on the soap box. 

Still, sometimes, it's just nice to be Maggie.  And, thanks to Facebook, so many of my classmates already know about my beautiful children and my grateful attitude about having them in my life. As such, it was nice to just be me and leave my soap box at home for a night.  Even us parent-advocates deserve a night off once in awhile!

Advocacy Lesson #3:  I am a parent.  I do what I do because my children need me to do it. It's that simple! I really do appreciate all the compliments about my efforts on behalf of my kids...  And about how amazing My Boys are.  They are, aren't they!  (You should meet them in person!) But, the truth is -- and every one of us who have children with Down syndrome know this but those of you who don't might not -- I am doing just exactly what every other parent does... Which is everything and anything that my children need me to do to pave a peaceful path for them in this world.  Is that not so?  When someone says, "I don't know how you do it!" my answer is always the same, "Ya do what ya gotta do!"  I believe that those of us with kids are parents first and foremost.  Your kid is shy so you plan more play dates for him.  Her kid isn't good with animals so she watches him like a hawk when they encounter anothers' pet.  Their kid struggles with math so they find her a tutor.  The neighbor's kid has a peanut allergy so their epi-pen is ever at the ready.  My kids have Down syndrome so I get them the help they need.  It's only a big deal if you make it so.  I don't!  You see, my kids are JUST like yours with their own little idiosyncrasies that I try to address any and every way I can.  I am a parent!

Yeah, it's a funny little life fraught with minor details that make us all different and great big similarities that make us all the same.  We're all in it together and doing it the best way we know how.  Each in our own unique way.  To all you parents who advocate for your children with special needs, keep up the good work.  To all you parents who don't have children with special needs, know that the rest of us are just like you.  Our kids are just like yours.  Our lives progress one day at a time with the sun rising in the east and setting in the west.  We all worry about our kids, their health, their education and their future no matter who they are or how many chromosomes they have.

P.S.  Thanks, my friends, for all the compliments on how I'm handling my journey.  I really do appreciate your recognition as it absolutely does help to keep me going when the going gets tough... As it does every once in awhile for all of us (special needs aside).  That said, my hat is off to you and your parenting skills and style too.  Every parent I encounter has something to offer that helps me as I travel my path.  God knows it's not always easy no matter which children you've been gifted... but it is always worth it!  We've all heard the saying, "there's a hundred ways to skin a cat" (if that's your thing).  Well, there are even more ways to raise a child!  I recently heard that, in child rearing, you only need to get 40% right to raise a reasonably well-adjusted child...

The trick is figuring out which 40%! (LOL)  Good luck and enjoy your journey!

Saturday, October 9, 2010

Down Syndrome Awareness -- Using The R Word -- Be Mindful of Who You're Talking To

In the midst of the fun, over the din of the Disc Jockey spinning hits from 1980 at my 30th High School reunion, right there in the middle of polite conversation with me, two of my classmates let the R word rip.  For the first time since having my beautiful 5-year-old identical twin sons who have Down syndrome, I did not correct the culprits who used the offensive term... both of whom know me and know about My Boys through Facebook. It HURT me to hear them use the term.  So, why didn't I call them on it?  Well, I didn't want to get into it in the middle of a party.  I didn't want to offend.  I didn't want to spoil the fun... though it was spoiled for me.  Sadly, my opinion of each of these highly educated people fell a little bit last night.

Perhaps by telling the story here, you might recognize yourself and go forth to use the R word no more:

Poking fun at yourself when you attempted but failed to recall something you once knew, you laughed and said, "... I'm retarded.  Ha ha ha."  When I didn't acknowledge your comment but chose, instead, to stare blankly into the middle distance because I just couldn't speak through my cringed lips, you clarified, "Yeah, I'm totally mentally retarded when it comes to remembering things.  Ha ha ha!"  I continued to avert my eyes, to not acknowledge, to swallow, to breathe, and not correct your misspeak in the midst of a good party.  I could have.  I should have.  But, I know you, you're the type that would be totally insulted at being corrected... Then again, you didn't mind insulting me!  Besides, there's a time and place for everything.... except for the R word.  There's no appropriate time or place in polite conversation for that word anymore.

Yes, you know that I have children with Down syndrome. But, I guess, what you don't know is that the way you put yourself down using the R word, is painful to me.  To you it was a joke.  Yeah, I get it!  But, comparing yourself favorably to people with intellectual people like my sons.... ISN'T FUNNY.  You don't know that every time I hear the R word I feel as though a knife is being twisted in my heart.  My friend, you are insulting my children when you use this term!  You are making fun of my beautiful and innocent little boys whose intelligence outshines any IQ test score every day of the week.

Let me tell you first hand, Mom's like me don't think it's funny to call yourself or anyone else a retard.... I know that you meant it as a joke, as a put-down to yourself!  But, that's exactly the problem!  You're saying that being intellectually challenged makes you less than the rest of us. Puts you into a group you would never want to belong to. Puts you in a group with My Boys.  And therein lies the insult.

No, I have no chip on my shoulder.  If you know me at all, if you've ever read my blog, you know that my acceptance of my children is total.  No, I'm not one of those people waiting to be insulted.  As a matter of fact, I generally avoid people who insult me, who insult my intelligence or that of my children.  But you, YOU are my friend.  I didn't expect it from you.

So, I invite you to come and spend some time with my children or others like them.  See the incredible beauty and love that I see.  Know that they are so much more than an IQ score in some "educated" person's file drawer.  Then, when you've come to know them and love them the way I do, when you see them for the wondrous people they are, STOP USING THE R WORD!  It's hurtful and derogatory to an innocent group of people who struggle for acceptance every day.  They don't need to be the butt of your joke.  They need your help and acceptance in a society that judges us all -- but especially them -- too harshly.  You have the ability to help change the world -- their world, my world, our world -- for the better.  All you have to do is delete that word from your vocabulary!  Do it for me.  Do it for My beautiful Boys!

The next time that word begins to roll off your tongue... think of me and My Boys.  Then STOP... change it.  Say something that's true but not hurtful like, "I can't do that anymore.  My memory's shot!" or "You know me, I'm a bit uncoordinated that way."  I'd laugh at THAT!  But don't use my children as your point of comparison.  And, by the way, now that you know how much it hurts me, when you hear someone else use the disparaging R word, remember me, remember my boys and their smiling faces and beautiful green eyes and loving embrace, and tell that person about me, about my boys.  Tell them what I've told you.  Tell them the R word is a derogatory term that has fallen from favor and shouldn't be used anymore.  It hurts innocent people!  It's the right thing to do!

Thanks for listening, friend.

Down Syndrome Awareness -- Expectations & Acceptance

I wrote recently about my belief that parental expectations affect acceptance of children with special needs.  Well, I just spent the last 4 hours with 150 old friends at my 30-year High School reunion (yes, I'm sorta old).  It was interesting to hear all the stories of where people had been and where they were now in their lives in comparison to where I am in mine.  Life is a series of stages, isn't it?  And, most of my high school chums are struggling now to put their children through college as I struggle to get mine out of diapers.  That made for a rather strange and laughable time warp... for me anyway.

When I was in high school (or maybe in college when I dated one boy for 4 years), I thought 28 was a good age to get married.  At 28, I thought, you'd have lived a little.  Worked a little.  Seen a little.  Learned a little.  Certainly you'd be ready to settle down by that late age!  I thought early 30s was a good time to have children.  Made sense after a few years of wedded bliss with just me and my hubby that we'd start growing our family.  I planned to have two children... because that would be world-responsible replacing myself and my new hubby to maintain a zero population growth!  No, these weren't expectations.  They weren't wishes about how my life would go.  Or even a plan. They were more an informal blue print I thought would be pretty cool and functional.

By the time I turned 29 I knew I was off-track and was going to have to wing it going forward.  Knowing that all this good stuff would come when it was time (because good stuff always comes to those who wait) I was patient if not mightily preoccupied with a fulfilling career and a darn good (read: fun) life!.  At that point, acceptance of where my life was and how it might turn out was key because, clearly, I was NOT in control.

Well, if you know the end of this story (or maybe the beginning) then you know that I missed every milestone event I had concocted in my young brain.  I didn't meet the man of my dreams until I was 32 and then we spent his requisite 5 years dating before we tied the knot.  I already had the cat leftover from college and we got the dogS (2) before we got the marriage certificate.  We married and had our first child within a year, waited 3 years and then, to my utter surprise, had identical TWINS!  By the time the NeoNatologist said they had Down syndrome I was long past realizing that resistance was futile and acceptance was the only logical route!

No, my life has NOT adhered in any way to my loose idea of how I thought it might turn out.  There's a line in the movie, Marley & Me, when Jennifer Annisten (before her R word misspeak when it was OK to watch her movies) in response to her husband yelling at her that another child was not "part of the plan" says "NO, this was not part of the plan.... it's sooo much better!  This is real life!"

Yes, my life is certainly real life.  Not a school girl's dream.  It's deep and dark and ugly at times.  It can be scary. And every once in awhile I think, "This is not what I asked for!"  I've said this before too... But I guarantee you it'd probably have been all these things if The Boys didn't have Down syndrome.  If I had married at 28.  Or if I had settled for just one dog and one cat instead of 2 of each.  But I didn't! And, it's been a wondrous ride laced with the most beautiful ups and incredibly passionate downs.  I wouldn't change a thing about my life! That's the truth!  It's been wayyy more exciting than anything I might have dreamed up in my sheltered imagination so many years ago. 

Yes, it's been a heck of an adventure so far and the ride's not nearly over.  When it comes to having children with special needs (or without)... Resistance IS futile!  And acceptance opens the door to tremendous and unexpected love...

Besides, it's just more fun!

Thursday, October 7, 2010

Phase 1 Potty Training: Dogged Perseverance & Continuity

I've boldly announced that my boys are potty-trained in a recent post.  And our school district totally agrees!  They are!  We are collectively right -- and simultaneously wrong -- depending upon how you define potty-trained.  Yes, the boys use the potty all day long to go pee-pee.  They wake up dry in the morning and I take them to the bathroom.  Then they go through their 6-hour kindergarten day without any accidents.  They come home and use the bathroom immediately upon being reminded.  And there's the hitch... At home, they MUST be reminded MOST of the time.  Occasionally, they get up and go on their own but that is the exception... at home!  At school, they go regularly and on their own... because everyone else goes regularly and on their own.  Children around them all day long, raise their hands and are excused to go potty.  The Boys do the same.  But, at home, we're not raising our hands and announcing it every time we have to go potty.  We all just get up and go to the bathroom... when ever nature calls.  The Boys go, but not always, every single time, to the bathroom.  Accidents still happen many days at home in the evenings when the business of our lives gets in the way of the pottying reminders.  Time slips by and the pee-pee occasionally slips out.  But, we've developed a methodology and process for that too!  So this is our potty-training reality.  They are Phase 1 Potty Trained! 

So let's delve into the nitty gritty of how we successfully achieved this first phase of the potty training process!  I'm no better at this than anyone else and there's no magic to it nor any one method that will work for any one -- or two, in my case -- of our kids the way it works for any other child in particular.  I just kept reading other successful accounts of potty training children with special needs (and those without) until I found and formulated a hybrid method I thought might work for MY Boys.  Then I implemented it doggedly and tweaked it until we hit on a process that actually did work for us.

As an Inclusionist parent, with Kindergarten in our near future, I needed The Boys to be potty-trained so that their toileting habits could not be a factor, nor influence the Committee on Special Education (CSE), with regards to their placement.  Though the law allows for un-potty-trained children to participate in "regular" kindergarten classes if the inability to potty train is deemed part of the child's disability,  I have found that too often this particular disability does play into classroom setting decisions (the diaper changing task changes everything).  I was NOT about to allow this factor to influence my Boys' placement!  So my deadline was set for me at September 7th, the first day of school. 

My daughter trained in one weekend with nearly no effort or purposeful intervention on my part.  At nearly 5, that was obviously not going to be the case with The Boys.  So I asked others' advice on my Down syndrome listservs and received lots of ideas and read books, articles and online posts about lots of recommended, tried and true potty-training methods. Some said sticker rewards systems. Others said co-training (have your child train their toy/doll/action figure while you trained them).  And yet another touted constant nakedness to allow them to feel the consequences of NOT using the potty up close and personal (a method best used during the Summer and outside so as not to wreck your carpets and furniture). All included interesting components that I made note of but it wasn't until I hit upon timed intervals that a hybrid method began to develop for me and my Boys. 

I googled clocks, stop-watches and timers until I happened upon the $20 Gymboss interval timer that allows 99 trials of timed intervals ranging from 1 to 99 minutes programmed at the user's discretion.  It's a tiny little timer with belt clip and the ability to choose vibrate and/or alarm to last 5 or 10 seconds, again at the user's discretion.  I bought packs and packs and more packs of Spiderman and Toy Story underwear (remember I'm clothing/training two!) and chose Friday after school as our starting date... to give me the weekend to foster some recognition of the process before I sent them to school on Monday.  I also pre-enlisted their school's teachers and aides to actively participate in the process as the hand-off to school was made.

Prior to starting their potty training regimen, I'd spent months before and after their bath, having The Boys urinate on command in the handheld pot that usually sits inside the potty chair that they'd long ago outgrown.  By counting slowly to 10 we would usually meet with some success (and they were counting pretty well too!).  Slowly, I'd migrated that process to actually standing and urinating on command in the toilet... Again, only before and after their bath. 

So, on the designated Friday afternoon when we got home from school, I took off their diapers, brought them to the potty to void their bladders and put on their first real pair of underwear.  I set the timer for 20 minutes and waited. Within 5 minutes there was a big puddle at the foot of the stairs with My Little Man standing over it saying, "Wet!"  The next 40 minutes were fraught with puddles and soaked through undies.  Slow learner that I am, I finally changed the timed interval to 10 minutes as a starting point.  I'd read about errorless learning where children are taught slowly and steadily the right way to do something, never experiencing or having to unlearn the wrong way.  Unfortunately, I blew that milestone which, I think, was probably not such a big deal since peeing in diapers seems to already be the "wrong" way with regards to learning how NOT to pee in ones' undies. 

So here's the down and dirty on how we progressed:  Interval timer was set for 10 minutes.  As soon as the buzzer went off -- without exception -- I'd take My Little Man and walk him into the bathroom, drop his drawers in front of the potty and, with my arms lovingly wrapped around him from behind, verbally encourage him to urinate.  He did... every time.  Together we'd pull up his undies then his shorts and flush the potty.  Wash his hands then rinse and repeat... with the Big Little Man.  Despite mild protests, both boys voided.  We kept this up for the better part of an hour without "accidents" before I moved the timer to 15 minutes and then quickly to 20.  At 20 minutes I discovered that humans cannot pee indefinitely every 20 minutes and a Mom can lead a boy to juice but cannot MAKE him drink.  Still, we kept up the routine and rewarded honest attempts (a droplet was acceptable) with praise and hugs and hi-5s  -- 'cause that's what works best for MY Boys -- throughout the evening.  We had one brief (get it? versus boxers...) accident and then stayed the course -- clean and dry -- for the next 2+ hours.  By Friday night, the boys had managed 5 hours of clean and dry with only one accident (not including our first 40-minute mis-start).

I chose not to attempt night-time potty training at this time!  The boys usually wake up dry and quickly "go" but a restless night often results in a urine-soaked morning diap so I opted to stay the course with the overight diaps.  That said, I put the overnight on them and we all went to bed.  As soon as I heard the first giggle on Saturday morning, I brought the hand-held potty insert upstairs (FYI -- we don't have a bathroom upstairs... which presents consistent difficulty in the toilet-training process) and had both boys void.  Once downstairs I put the undies on again and we restarted at 20 minute intervals.  All day long -- we went nowhere and did nothing but attend to that timer -- the boys did amazingly well.  By afternoon I upped our interval to 25 minutes, then 30 when and the boys crashed.  Several accidents later, I pushed the timer back to 20 minutes to try and recoup.  Their resolve to pee-on-the-pot deteriorated as the evening wore on.  Sunday came and we started anew... again.  We maintained the morning hand-held pot routine and 20 minute intervals, and The Boys were at the top of their game again.  Until afternoon.  To remedy a messy situation, I put an overnight feminine hygiene pad in their undies to catch most of the mess.  It worked for me and didn't seem to send them back down diaper-memory lane.

On Monday morning, I packed a big bag of undies and feminine hygiene pads, wrote out my instructions and stuffed it into their backpacks.  I followed our established protocol EXCEPT I put them in a pull-up for the 50-minute drive to school with undies & sanitary pad over top.  I handed off the Gymboss while the Teacher and Aide removed the pull-up upon arrival.  The Boys did FABULOUSLY staying dry the entire day!  By the end of the day, the Teacher's Aide, Ian, who also happened to be "assigned" to their potty training and was their favorite person in the world at school, had bumped the intervals up to 45 minutes.  The Boys followed their classmate's leads (The Boys attended an integrated preschool class with 50% of the class being "typical" and 50% having special needs), raising their hands and going to the bathroom -- with little assistance -- all day, and then all week long.  By the end of week one, the school had removed the sanitary pad safety net and had not experienced even one single accident all day, or all week long. 

We, on the other hand, continue still to meet with marginal success/occasional accidents in the afternoons and evenings.  I'd put The Boys at 90% success rate.  That's awesome, in truth.  As for the other 10%?... I am absolutely 100% to blame for this.  Not only did I make the assumption that their school success would translate to home success -- not true -- but I did not unequivocally honor the timer.  THIS continues to be my bad.  When I do not honor the timer, which is now set at home for 30 minute intervals, we experience accidents.... more so for my Little Man than my Big Little Man who, it seems, could hold it for 2 hours and withstand significant pain to do so until he's brought to the potty to go.... mostly.  I can skip one round to go 60 minutes most of the time.  BUT, when I DO honor the timer, all is well, clean and dry 100% of the time!  THAT'S EXTRAORDINARY!

So, this is our new normal.  We are timed-interval potty trained.  At school, The Boys know to go potty  when transitioning between activities... which, in Kindergarten, effectively happens every 30 minutes.  They do not use the interval timer but use gentle reminders only as needed.  At home, we live by the Gymboss.  Some would say this is an intrustion on our lives and not much of an improvement over diapers since we only needed to change a diaper every 2 hours or so.  But, in order to foster the independent toileting skills they'll need in life... This is what we have to do for now and until The Boys accept the full responsibility for "going" themselves.  This will happen -- like everything else -- in their own time!  I'm OK with that!

As for #2 training, I would never claim that the boys are potty trained for bowel movements.  Yes, they both can, have and will poop on the pot if given the opportunity when nature calls.  And, since nature has blessed them with pretty regular bowels, most of the time, the need occurs in the evening and/or right before bed. (It has only twice called during 2 years of preschool.)  Knowing this is a Godsend because we can watch for the telltale signs -- hiding in the corner, grunting or outright announcing, "poopy hurts" -- that triggers the frantic (not really, but sorta) run to the bathroom to "catch it' on time.  Otherwise, we have a double-duty (LOL) accident on our hands because we can all understand the pee-when-you-poop phenomenon.  To minimize the negative effects of this happenstance, I briefly and/or occasionally go back to using a large overnight sanitary pad (I prefer Kotex overnights) in the afternoons/evenings... particularlyy when pooping alludes them for a day.  But, mostly, if I find The Boys and I are having a particularly rough time sticking to the [Gymboss] program -- for #1 and/or #2 -- I implement the New York Times Naked Toilet Training technique by removing all clothing from their bottoms, stripping them down to bare skin (Thank God for long shirts).  The Boys NEVER urinate when around the house when they're naked.  They might lose a drop or two but quickly catch themselves and announce it so we're off to the bathroom again.

Yes, they are potty trained!  It's not perfect... but they're 5 and they're only 3 months into this process.  All in all, they've done PHENOMENALLY WELL!  And, I am beyond pleased with their rapid progress.  Could we all do a little better (Note I said WE because I do see the difference when I slack)?  Sure.  But, our success is palatable.  They're included in the Gen Ed class at school for most of the day, their toileting habits never coming into play in the decision-making process.  And, given some of the nightmare accounts of potty training I'd heard before I started, I'm very pleased with our outcome. 

Did we/do we continue to make mistakes?  Yes, but tweak-and-learn has become my motto.  Below I've listed some of the mistakes I believe I made make on a pretty regular basis and to The Boys detriment:

  • The hand-held insert potty made us all lazy, I think.  At home, The Boys seem to wait around, preferring for me to bring it to them instead of taking the responsibility to get up and go to the bathroom.  Convenient, yes.  NOT conducive to what small sliver of errorless learning there might be left.  I have to STOP using the hand-held and make us all go to the bathroom... like in the real world... if I ever expect independent toileting skills.
  • Honor the timer.  Honor the timer.  Honor the timer.  I don't!  Life gets in the way.  There are days where the 10 seconds of beeping barely register in my brain.  NOT good!  I've got to get better at this or we'll end up with more accidents than visits to the pot and I'll start to see my potty-trained Boys resorting to urinating in their pants more regularly than urinating on the pot.
  • Honestly, I think the pad may be a mistake.  It seemed like a really good idea when cleaning that 10th pair of undies and/or the HUGE wet spot on the couch.  However, I think The Boys see it as just a smaller diaper which gives them permission to go.  After all, they've spent the better part of 5 years peeing in their diaps, that muscle memory is much stronger yet than holding it and running to the bathroom.
  • Believing that success at school translated to success at home.  The social situation at school is completely different than at home.  Humans are pack animals and will follow the pack.  At school any fraction of 20 children are clamoring for use of the bathroom at any given time.  At home, asking Daddy to hurry up is an exception.  No one's raising their hands or announcing their use of the bathroom.  As such, the peer training at school is so much more intense than at home... which puts the onus on... MOMMY (let's be honest) to make up the difference. 

Those Aha Moments:
  •  Afternoons are our tough time.  The Boys have worked hard to be good all day and are, as they say, "all done!"  That means beefing up the toileting routine at home to stay on track.  I found out that when I work it, it works!  When I don't, they pee everywhere but on the pot.
  • The pad is cheating and, though it may ease my "load", it may well be keeping them from learning.
  • Going straight for the stand up routine makes more sense than teaching them to sit down to urinate and then un-teaching them to sit down in favor of standing.  I read that unteaching is tough in children with Down syndrome.  Maybe, maybe not.  But it seemed way more logical to me that if I wanted them to pee standing up I had to teach them to pee standing up.... It's working for us. 
  • Boy does as boy is... or sees.  Daddy HAS to be involved if you're going for the stand-up routine.  Mommy can't show The Boys how to do THAT!  Even positioning, like holding it, appropriate stance to keep drips from your pants and shaking off those last few drops are techniques for Daddy to share effectively.  I can talk 'til I'm blue in the face... but once they've seen Daddy do it, it's cool.
  • Humans are pack animals.  Seize the opportunity to follow the crowd... to the bathroom.   My Boys really like being part of the IN crowd, doing what everybody else is doing. 
  • Sometimes The Boys seem to forget how to activate the pee-pee muscles to urinate.  When this happens, I patiently wait while lightly scratching on the fat pad above their penes (correct plural... which makes me want to laugh 'til I pee my pants every time I say it) to activate the appropriate muscles.  Works for us!
  • The Boys often lose interest in the process midstream... literally.  To keep them "going" I point out the pee pee bubbles that develop as a function of peeing in the pot and/or I encourage them to aim as far as they can to hit the inside-back of the toilet bowl. 
  • I find that if I don't get them to void completely we're far more likely to have a mid-interval accident.  I've come to recognize that when a full-stream of urine stops dead, they're holding back.  And, the only way I know they're really ALL DONE is when the stream peters out (perhaps the origin of that phrase?) and we trickle down to droplets. 
  • At this juncture, they're potty trained enough so that when we have someplace to go where cleaning up an accident might be awkward, I can put a pull-up on The Boys and know that they will still hold it and/or tell me when they have to go to the bathroom.  They're not regressing just because there's a diaper between their legs.  That's HUGE progress!
So this is my take on it:  No child is the same -- with or without special needs or Down syndrome.  No single potty-training method will work for all of our children but a combined approach worked for me.  Nothing  -- no outcome -- is perfect.  This is a process!  Once you accept these truths,  go ahead and formulate a plan of your own and go forth and potty train.  If you hit a wall... don't quit!  Ask questions, tweak your method and keep going.  We are ALL here for you!  Please feel free to comment, email or Facebook me any questions about anything I've said, how we handled any aspect of our Phase 1 Potty  Training endeavors OR about any issues you're encountering.  I'm happy to offer my opinion... but please remember, that's all it is... One newly-potty-trained Mom's opinion!

Most of all, good luck and stick to it with dogged perseverance!  No matter how long it takes, it's totally worth it especially when you consider what the alternative -- NOT potty training -- means for you and for your child.

(or just the beginning?)

Wednesday, October 6, 2010

Down Syndrome Awareness -- More on IQ Testing

Yes, I said to refuse IQ Testing for your child with Down syndrome!  If anyone asks, JUST SAY NO!  I didn't!  I stupidly thought that a non-verbal IQ test might be just the thing to show the world (read: myself) just how smart My Boys really are... In hindsight, I don't remember why I brought the subject up.  The school didn't ask for IQ testing.  I did... sorta!  As a matter of fact, our school district didn't ask for any testing at all.  Nothing... even as My Boys transitioned from CPSE to CSE with testing and evaluations that were 2 years old.  I thought that was strange and inaccurate so I asked why they weren't doing "a full battery of tests" as I'd heard was the norm.  When they asked me what I meant by that I threw in cognitive testing along with PT and OT evaluations as well as a speech eval that allowed the diagnosis of Apraxia (and pretty much sealed the delivery of PROMPT services for My Boys)!

Yes, I'd consented. But, consent is a funny thing.  Recognizing that My Boys had Apraxia, it was key, for me, that cognitive testing be delivered using a non-verbal vehicle.  As such, I specifically requested that a non-verbal IQ test be used... recommending several choices including the WISC (Wechsler Intelligence Scale for Children), Leiter and TONI (Test Of Non-verbal Intelligence).  The parameters of each (including appropriate age range), the testers felt, were not quite right for use with My Boys.  So they opted for a standard Intelligence Test -- The Stanford Binet -- which is heavily reliant on receptive AND expressive language and is absolutely NOT APPROPRIATE for My Boys who have Apraxia!!!!!  I allowed myself to be convinced by the testers that the verbal versus non-verbal scoring of the subtests would accurately account for and depict the impact that My Boys' language delay had on their scores. While these subtest scores certainly told a story a tad closer to the truth, they still did not approach accuracy for My Boys.  The rest, as I posted yesterday, is history... and will likely haunt us for the rest of our lives -- as bad history often does -- or at least for the rest of The Boys' school career!

To counter the negative impact the scores had/may have on-going on the educational decision-making process for My Boys as much as possible, I indicated, in writing, that I disagreed and disputed the scores and requested NOT to have them reported in their IEPs with other evaluation results. Furthermore, I insisted that if and when the test scores were provided to any one or reported anywhere, the final scores must be broken down by verbal versus non-verbal results for each subtest.  Please note: Most testers will roll the results up for reporting which provide far less meaningful categories for all children but especially for children with special needs.  I based my request on the notion that the purpose of test scores was to provide an accurate and informative profile for those reading my child's IEP.  To this end, the rolled up scores provided a misleading picture while the broken down subtest scores told a more accurate story. My school district agreed [but it was up to me to get the testers to provide the scores in the broken down format I desired].

As an alternative, if you're so curious you just can't help yourself, it's also an option to pay out of pocket for IQ testing and ask the tester to use the specific test vehicle(s) you choose.  This way, you get to see the results and decide for yourself whether you want to share them with your school district.  Please note that once you've approved the school district still gets to decide whether to accept those 3rd party results.  I still believe the better tact is to refuse testing knowing that it will NOT accurately depict your child's cognitive ability!  You'll sleep better! Not done, it won't hurt your child!  Once done, it may!  

That said, in many states, IQ testing is required to receive services so parents remit to testing.  But, what many parents don't realize is that based on their child's score, they may also lose critical educational opportunities -- such as inclusion, a research-based best practice for educating children with disabilities.  Though this practice is discriminatory in nature, many schools have the legal power to justify their exclusion of your child based on the standardized IQ testing performed. 

There are all sorts of examples of kids with cognitive disability ranging from severe to non-existent doing not just better but absolutely FABULOUS in Inclusion educational settings...  Children who would never have gotten the chance to learn side-by-side with their peers, despite it being the law, if IQ scores were the catalyst behind their acceptance into such a program.  The truth is, if you raise the expectations, your child with Down syndrome or any other disability will rise to the occasion and achieve more... All you need to do is give them the chance.

Research shows us that learning side-by-side with typical peers provides the best social, emotional and academic outcomes for children with special needs (as well as for children without).  If one test score has the power to deny your child this opportunity to be INCLUDED, I say fight it!  Take it from me, -- from my experience -- the scores will NOT reflect your child's cognitive ability and, as they say in the legal world, the information can and will be (or may be) used against you (or your child) in deciding educational placement!

Monday, October 4, 2010

Down Syndrome Awareness -- "Cognitively Intact" and IQ Testing

"Cognitively Intact" is a term that's thrown around the Down syndrome community like a hot potato.  It's the new "high-functioning".  Parents pronouncing proudly -- like me, not long ago --  that their children with Down syndrome or other disabilities are "cognitively intact".  Preschools in Queens, NY (and other places, I'm sure) actively practicing segregation by automatically disallowing the enrollment of any child that is not "cognitively intact" as indicated by their IQ test scores.  Public schools nationwide trying to abide by the federal FAPE (Fair and Public Education) laws are looking at IQ scores to determine if a child is "cognitively intact" and can, therefore, be included in the LRE (Least Restrictive Environment) better known as a general education setting which has been proven through research to be the most effective place for educating children with disabilities.  For us Moms of kids with Down syndrome, or other potentially cognitive disabilities, the notion that our children's education and future relies heavily on the result of one particular test score -- the IQ -- weighs heavily on our minds as an incredibly detrimental practice for determining educational placement.  Never mind we (and our children) have to live with those inaccurate results and labels for the rest of our lives.

What does it mean to be "cognitively intact" anyway?  A child is assigned this particular label when he demonstrates the ability to grasp age-appropriate concepts generally determined based on scoring in a "normal" range on an intelligence or IQ test. 

Watch out folks I'm climbing up on a VERY BIG soap box right now.....

IQ tests are fallible!  ESPECIALLY for children with special needs.  While I do not discount their potential contribution to understanding where a child scores in relation to others who took the same test, their ability to accurately measure the cognitive abilities -- let alone predict future academic or life success -- for people with disabilities is limited at best and outright inaccurate at worst. These tests are developed and normalized on "typical" populations... NOT on children with disabilities.  Children with any extenuating circumstances, including those who speak English as a 2nd language, those who grow up below the poverty level or those with non-cognitive disabilities including expressive language and/or processing difficulties -- OFTEN do nor score in the "typical" range.  They may well be "cognitively intact" but the tests cannot account for environmental and other factors that have been shown to drive the scores down.  These tests are also developed under the assumption that "typical" language skills exist.  That is, they are heavily reliant on receptive and expressive language skills not only to understand the question but to provide an answer as well.  A child can have the ability to understand the question but if they cannot express the very specific and prescribed answer lingually -- as is the case in a child with Apraxia, for instance -- the "normal range" score will not be reflected. An expressive or spoken language delay is not necessarily about cognition or intellect but these tests cannot account for such issues.  Additionally, IQ tests are timed delivery and response vehicles.   That means a child who has processing delays or attention issues can understand and answer the questions accurately but will not get credit for being "cognitively intact" because he took too long to respond. 

My Boys were considered "cognitively intact" -- performing at the low-end of the "normal" curve -- right up until the IQ test became language-based.  Yes, I fully acknowledge that most "typical" 5-year-old children have a greater command of the English language than My Boys do.  BUT, in addition to Down syndrome, My Boys have also been diagnosed with Apraxia... An oral-motor disorder that has NO cognitive implications whatsoever.  So, while they're generally able to comprehend the question, they're unable to express their answers lingually.  And the test does not allow for responses using sign language, body language, or atypical responses -- such as saying "uh-oh" and "hot" while pointing to the part of the picture in question -- when asked, for instance, what's going on in a picture of a pot boiling over on the stove.  Even their two individual testers acknowledged that they could clearly see that My Big and Little Man understood the question and responded with an appropriate answer, BUT, because it was not the prescribed "correct" answer they could not give them any credit.  Even their school work and teacher evaluations continue to show The Boys' performance to be at the low end of the "normal" curve despite their "failed" IQ scores. 

Here's the hardest thing about the whole IQ Test experience.  I know... I mean I KNOW... about the fallibility of these IQ tests and the fickle assignment of a term like "cognitively intact".  BUT, to be aware that your child is capable of so much more than is reflected in their scores is extraordinarily frustrating ESPECIALLY when their educational future is often, sadly, based on these highly inaccurate scores.  WORSE, I still have to live with IQ scores that show The Boys to be "severely mentally retarded"... a classification that is INACCURATE by all personal and professional accounts.  I am soooooo sorry that I ever consented to these tests in the first place. 

No matter what level of cognitive functioning your child has, these tests consistently under-represent your child's ability.  So what's a parent of a child with Down syndrome or special needs to do?

REFUSE IQ TESTING!  Instead, go with clinical observations and evaluations such as their school performance and evaluations provided by their teachers and therapists.  Though somewhat subjective, these are more accurate predictors of your child's ability to perform in an educational setting and are therefore better measures to help determine future educational placements.  That means your child's future will rely on their past performance instead of being based on the comparison of their performance to "typical" kids.