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 disabilities...to 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!

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.

THE END

(or just the beginning?)

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!

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.

October is Down Syndrome Awareness Month: Acceptance

I'd venture to guess that regardless of where you live, or what country you call home, the reaction of individual parents who receive the news that their newborn baby has Down syndrome -- whether that information comes at birth or during  pregnancy -- are more similar overall than not.  It's likely this similarity is the reason so many parents of newborns with Down syndrome are provided, at some point usually early in their new journey, with the "Welcome To Holland" story that was given to me to help me "get over the disappointment" of having a child with Down syndrome instead of the typical child I was expecting. 

Personally, I was never disappointed! Honestly!

It amuses me that so many adults enter into this parenthood-thing with hard-core expectations of what it's going to be like to be a parent... complete with a specific vision of who or what their child will be. I'd also venture to guess that if you asked MOST parents -- of children with or without Down syndrome or any other special need -- they'd tell you that their pre-parental perceptions were somewhat misguided about how their children would behave and about how much hard work and sacrifice this parenting thing requires. 

Yet, we parents of children with Down syndrome are told that it's OK to mourn the loss of that "typical" child we thought we were getting until we gain some acceptance of the child we ended up with.  Like we got the booby prize but we'll eventually learn to love "it" anyway.  As though Holland could never be as nice a vacation destination as Rome even if you picked Holland in the first place.  I recognize that this thought process helps so many parents come to terms with the diagnosis.  But doesn't it sound a bit odd when you read that sentence above?  The child -- or children -- I got are not booby prizes!  And I am not mourning the death of the typical child that died in-womb and was mysteriously replaced by this one (or two) I got.  My children are exactly who they are supposed to be.  In reality, the funeral should be for our unrealistic EXPECTATIONS that rightfully died.  It's not that Holland isn't a beautiful place to vacation, it's that we mistakenly thought we were going to Rome.  The problem is NOT the destination we ended up in, it's the full blown and unrealistic EXPECTATION of adults who thought they knew exactly where they were going and that it was somewhere else than where they ended up.  By the way, this sentiment describes many a parent of typical children that I know too!

I do not disagree that THIS life I'm living is not quite what I'd expected my life to be way back when I was 20-something years old and dreaming of what my prince might look like.  I can tell you that my fairy tale visions of life had all but vanished from my memory; replaced by a completely acceptable reality as a function of all the wonderful dates (note the sarcasm font) I had that contributed to the demise of those unrealistic dreams and set me up for life-long unconditional acceptance of whatever came my way... long before I ever seriously contemplated actually having children of my own.  As a dreamy eyed young lady, I knew without a doubt that I wanted to have children some day.  And as a not-so-young adult finally contemplating marriage -- the ring already on my finger -- I gave very SERIOUS thought to WHY I wanted to have children of my own.  Not that my resolve to have them had changed at all... but I felt compelled to examine my reasons WHY I would have them. 

In a nutshell, I wanted desperately to share my love and knowledge of this wondrous world that God gave us with a child.... this despite acknowledging some nasty developments in the world (like 9/11 though that did not occur until I was 8 months pregnant with my first child).  I wanted to be a part of forming the peaceful and remarkable future of our society by teaching my children, and for them to teach their children, to be universal citizens of the world.  I wanted to share my laughter, my faith, and my love with my children and to have them share theirs with me... I wanted to see the world again, and forever, through the innocent eyes of a child.

Yes, I always knew I'd absolutely have children!  But my expectations had morphed into who I hoped I would be as a parent more than who I thought my child would be right out of the proverbial gate.

That said, early on in my pregnancy, any thought of typical went right out the window as I sat on the OB/GYN's table, 8 weeks pregnant and wondering whether I was carrying a boy or a girl.  I love a surprise and so I KNEW this was a question that would not be answered  -- along with what color eyes, hair and skin tone my child would have -- for at least another 7 months.  Honestly, my own expectations of typical went right out the window when the midwife said, "and there's the other baby!" Yes, I mourned my idea of having just 2 children total instead of the 3 I'd have after birthing these twins.  The next few months dragged painfully by, dashing whatever meager expectations I might have had for a "normal" pregnancy with each pre-natal test and death-defying medical diagnosis I was given.  Down syndrome was NEVER mentioned but absolutely false positive diagnoses of hydrocephaly, microcephaly, viral infections calcifying their brains, still births, vegetative states at birth, painful deaths following birth and more -- I could go on but you get the picture.  I was put through test after test and rushed from one specialist to another all subtly suggesting that I terminate because these babies would not be perfect... Might not survive anyway.  And then, I suffered the disappointment of having my own body begin to give out under the physical and emotional stress of carrying two potentially imperfect babies.  I finally asked them all to stop!  I told them no more tests and to just be prepared for whatever might happen at their birth.  I said calmly and quietly -- but felt as though I'd screamed it at them -- that this would be a matter of God's will and all that good stuff...

And then, 32 1/2 weeks into what should have been a 40-week pregnancy, I gave birth -- Baby A's idea to come early -- to two healthy, breathing-on-their-own baby boys!  4 lbs 15 ounces and 4 lbs 11 ounces at 8 weeks early!  (For those of you who might not know, 5 lbs each is the typical weight for full-term twins.)  My babies were NOT still born.  There was NO hydro or microcephaly.  They were NOT "vegetables".  There were no viruses in their brains!  Everything, every piece and part that was supposed to be there was working well and accounted for.  10 fingers.  Oh, sorry... 20 fingers and 20 toes.  2 healthy hearts.  All the prerequisite and fully functioning organs.  Two pairs of beautiful blue eyes framed by brown hair.  Nearly 18" tall each!  Big and Tall despite missing their last 2 growth months of pregnancy and, especially, for being 8 weeks early!  IDENTICAL twins even though they were in two separate sacs (we mistakenly came to believe they would be fraternal twins but learned that 2% of all identical twins split in the fallopian tube and develop in separate sacs like ours did).  And, just between you and me, I had nearly convinced myself I was having a boy and a girl! But here they were.  2 months early and healthy!  ABSOLUTELY COMPLETELY HEALTHY! My two beautiful baby boys! 

Talk about EXPECTATIONS?  NO, I was NEVER disappointed.  Not for a single moment.  I was ELATED!  They were ALIVE!  They were WELL!  They were breathing on their own.  I had two HEALTHY babies!

Within 5 minutes of arriving at the NICU, the NeoNatologist said, "We're sending out blood tests.  There are... some signs... that make us think, maybe, the boys have Down syndrome."  I nodded nonchalantly, murmured, "OK."  FOR ME... it was OK!  It was ALL OK!  That sentence barely registered on the Richter scale given all the other cr*p they'd told me to expect.  Oh, I HEARD it!  And I fully and immediately understood that this was their way of telling me my babies had Down syndrome.   But, I didn't care at all!  My babies, my boys, my identical twins, were alive and well and breathing on their own.  

So you see, it's really all about our expectations and not about the child!  My children are, and every child is perfect -- perfectly IMperfect -- just exactly as they are.  And our expectations are IMperfect too!

Every parent I know that has a child with Down syndrome will tell you that the experience has been an absolute blessing in their life... though many admit that they may not have embraced this notion immediately upon learning of their child's diagnosis.  Yes, there may be challenges and/or difficulties inherent to having a child with Down syndrome or any other special needs.  But, there are no guarantees with any child -- with or without Down syndrome.  I've learned that if parenthood is nothing else, it is full of surprises, challenges and/or issues that continuously pop up along the way and often when you least expect them.  These are my expectations. 

That's life... and it's a good one!

31 For 21 Challenge: Down Syndrome Awareness Month

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We all have a unique journey in life.  Come, spend the next 31 days reading about my experience raising identical twin boys who were blessed with an extra 21st chromosome and who bless our family daily with their love and laughter. 

October is Down Syndrome Awareness Month -- help me raise awareness by reading along, linking to my posts and tweeting if you feel moved to do so. 

THINKING THANKFUL

First, thank you all for your response regarding our potty-training methodology.  I'll be writing up a detailed synopsis of our imperfect but triumphant experience to share with you all, as requested.  In the meantime, keep up the pressure if you're in the throes of potty training.  This is absolutely a case of dogged and systematic perseverance.

It's been a long Summer and a way too short Summer all at once.  In an effort to analyze and maximize my happiness I find I'm most grateful for the past; I'm enjoying the present; And I'm looking forward to the future.

[1] Happy to have spent my birthday weekend at the beach, camping with my children and my friends.  I'm grateful for the good weather.  For the good company of friends and family.  For the rest and relaxation.  And, though I would really have liked my husband to be there, he was sick AND had to work so he stayed home to take care of the pets and hold down the proverbial fort.  Even that was a bit of a Godsend.  Because otherwise I'd have had to fret about how to get it all done and, ultimately, ask my Mom to help out AGAIN.  But, I didn't have to thanks to the Sarge's untimely illness and unfortunate work schedule.  All in all -- for me -- a very relaxing way to turn 48!  Thanks to Tammy and to Sarge for making it so!

[2] I'm so thankful for my Mom.  For all the times SHE ASKS ME what she can do to help me... before I ever get the chance to ask her.  (OK, maybe it's that obvious -- like it's written in screaming font on my forehead -- that I need help, huh?)  But, Mom is always there to lend a hand when it's needed.

[3] I'm thankful that my Old Soul has the wonderful and intelligent brain she has... I really am unbelievably grateful for this.  She's an amazing child and I love her and her deep-thinking brain... But if anyone knows how to instill a sense of confidence in those brains to match her ability (especially in Math), please comment me the answer and help save my sanity. 

I used to wonder if I hated Math because I wasn't good at it or if I wasn't good at it because I hated it.  Turns out, I was good at it before I hated it and so was my daughter.  In fact, we're both still pretty good at Math.  So where does the hate come in?  For my Old Soul, right before the self-prescribed failure.... Somewhere in between 2 hours of tears, hyperventilation, refusal to even try and the complete shut down that occurs every single night.   That said... I'm also incredibly grateful that my friend, Eileen, gave me the name of a wonderful counselor dedicated to helping children and their families overcome just such problems... and he takes our insurance!

[4] I'm grateful that my boys are doing so well in their new school... our local public kindergarten center! I'm thankful and amazed that their teachers are quickly recognizing their ability and altering their educational program according to their "typical" needs (instead of focusing on their "special" needs).  Their "split" schedule allows them 1:1 time for academic training using Discreet Trial Training -- an ABA methodology that specifically addresses the needs of people who have trouble with rehearsal and the ability to commit information into short- then long-term memory (often the case for people with Down syndrome as well as autism).  In my district, this training is only available in the "special needs" class (though the law states services cannot dictate placement).   The boys get their related services during their time in the "special needs" class and the rest of their day is spent in the "general education" class with a 2:1 aide assisting my 2 little angels only to the extent that they need help (which, I can say proudly, isn't as often as the teachers first thought).  On paper, it's a 3 hour split schedule allowing 3 hours in each class setting.  But, as it turns out, their gen ed teacher and classmates have embraced the boys and the team has recognized that their ABILITIES far outweigh their disabilities.  So they've altered their schedule such that they spend more time with their gen-ed class and less in the "special" class.  They are NOT being pigeon-holed by their "special needs" in the public school system, as I feared might happen and had prepared myself to fight. Honestly, I am cautiously very optimistic! It appears that they are being recognized for their skills and abilities and their educational program is being customized to maximize these abilities and minimize their disabilities.  How cool is that?

[5] I'm thankful for the ability to forgive.  It lightens my emotional load and immediately frees me from the burden of holding a grudge.  I'm just not the grudge type!  And I think/hope it makes me a better and happier person.  I'm far from perfect at it as the thoughts of injustice creep back in here and there... but I'm practicing every day and it gets easier the more I do it.  Forgiving has been an amazing gift to myself.  (Try it, you'll like it.)