Friday, August 31, 2012

In the News - August 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of inclusion, of advocacy, of education, of hope and of love.  These are from the month of August.

AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
EVENT indicates a scheduled event
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

Bath mother: Why my Seb's a model child

UA Established as International Center for Down Syndrome Research

Mom: Autistic son denied haircut at Kennewick JC Penney
BLOG Olympic Spirit

DSE to evaluate reading and language intervention in US schools

In a perfect world, none of us would belong
BLOG Stop beating a dead chicken

Glee Season 4 Spoilers: Sue Sylvester's Pregnancy Game-Changer

JoJo Maman Bébé Autumn Catalogue features models with Down's syndrome

Disability advocates ignoring what’s best for disabled

State promises help for man fired from $12 per week job
Teeth Suck (But they don't have to)

'She is my heart and I am her legs': Devoted dad runs triathlon carrying his teenager daughter with cerebral palsy because she loves being outdoors

Deaf pupil with Down syndrome passes Leaving Cert


Arizona first: Man with Down syndrome gains right to vote

2 Omahans with Down syndrome honored with Eagle Scout
Positively New Year's
Rapist jailed for 16 years for targeting students with learning difficulties and attacking them in the back of his van


Hear, Hear!

Bated Breath's Burst Bubble
We got the call, or rather the email. Buddy Walk video stars!
The Lightning Kid and the New Sign
The Doctors' Waiting Room, or, The Value of Our Daughter's Life

8 truths about special needs parenting

VIDEO Train singer gives fan the shirt off his back

Young Adults with Down Syndrome Inspire New Moms

Alaska Politician Suggests that It is Time to Stop Educating Handicapped Children
What's it like to live with Down Syndrome?

An Immune Disorder at the Root of Autism
VIDEO Plus 15

American Muslim Organizations’ Issue Statements on Pakistani Blasphemy Arrest

Student shot at Perry Hall High School

How do you deal with the tough days?
The face of Disability Represented in Marketing Catalogues

London 2012 Paralympics - Schedule, Results, Medals, Tickets, Venues

Down Wit Dat is featured in Apostrophe' Magazine's Summer issue as a Web Resource.  Check out page 12!

We had our sixth T-21 Blog Hop on August 21. Join us for three days of excellent blogging on September 21! 

Our Facebook page now has over 800 fans.  I am humbled.  Welcome to all our new friends. 

Don't forget our Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

I'm looking forward to judging August's Photo Theme "Look What I Can Do!" Results to be posted tomorrow on Down Wit Dat's Facebook page. September's Theme to be announced at the same time.

...And that's the news.  Keep the stories and information coming!

Tuesday, August 21, 2012

Hear, Hear!

Listening to you, I get the music
Gazing at you, I get the heat
Following you, I climb the mountain
I get excitement at your feet
--The Who, See Me, Feel Me

Last Thursday, amongst two night shifts, two trips to the dentist and getting our ducts cleaned, we took Wyatt to the audiologist.  Like many preemie babies (with and without Down syndrome), he was referred for frequent monitoring of his hearing.  Those with DS are watched especially closely as there are a variety of hearing issues that can occur. He's had his hearing tested several times since birth , starting with our first trip when he was 4 months old (corrected).

Hearing issues are a common problem at birth (about 1-2% in the general population).  Many populations of infants are at high risk;  those amongst the highest include the premature, those with lower oxygen levels at birth, jaundice, irregularities of the head and face, infections, low Apgar scores and conditions such as Down syndrome.

Testing infants, as you can imagine, is a little trickier than testing a larger child or an adult that can easily indicate or describe what they are experiencing.  Also, there is the source of the potential hearing loss to consider;  is it a conduction issue or a sensorineural one?  Luckily, there are two different methods to test hearing in the little ones.  Both are automated, non-invasive and do not require the infant to react to anything.


The Auditory Brainstem Response (ABR) or Brainstem Auditory Evoked Potential (BAEP) test monitors electrical impulses between the auditory nerve and key portions of the brain.  Electrodes are placed on the scalp and the activity is recorded as a series of clicks are delivered to the infants ears via small earphones placed in the ear.  Using this test, it can be determined what range of hearing the child has. 


The Otoacoustic emission test  (OAE) measures a sound bounced back from the inner ear and tests the functioning of the cochlea.  An earpiece containing both a microphone and a sensor is placed in the ear and a series of clicks and tones is measured once it has been processed by the inner ear.  Sounds that are required for understanding speech are tested and based on this criteria, the child either passes or fails. 

Wyatt has always passed with flying colours in his right ear, but his left was presenting with some odd results.  During the OAE, we were either detecting fluid in the inner ear or a small depression on the eardrum itself.  This time, as he is older and now able to be conditioned to a stimulus, we had a new test; he was taught that after he heard a sound, a mechanical toy would light up and play for a few seconds in a shadow box.  Tiny microphones, identical to the ones he wore in his ABR tests, were placed in his ears and he was given some toys to occupy his attention when he wasn't being tested.  He loved this test, was conditioned after two tries (!) and passed with flying colours.  So much so that he has been discharged from the high risk program at Erin Oak and will only have to return if we encounter problems (such as suspected damage from ear infections, etc). 

We were happy to get this news;  not only is it one less appointment to worry about, but knowing that his hearing is perfect and speech ready is a weight off our shoulders.  We kinda knew that anyway... That kid could hear a cookie wrapper opening in the next room with the radio on and his brother and sister noisily tearing about the place.  However, now we know his hearing will not hamper his language development.  Which is important, as I long for the day that he can finally say (using a word or sign) "Mama".

Hyde, M., Newborn Hearing Screening Programs: Overview, The Journal of Otolaryngology, 34:2, August 2005.

Mersch, J., Kibby, J., Newborn Infant Hearing Screening, MedicineNet, 2012

Special Thanks to:

Infant Hearing Program, Mount Sinai Hospital, Toronto.

Erin Oak Centre for Treatment and Development, Ontario.
Join Down Wit Dat on the 21st of Every Month!

Friday, August 17, 2012

Genetics are not Material

Last week sometime, I was sitting in the living room as the three children bounced around and a commercial came on about Comedy Central's Roast of Rosanne.  "Cool!"  I thought... I like Rosanne (although I don't agree with all of her stuff) and the line up looked pretty good.   I was particularly happy to see Wayne Brady's name there;  Sean and I have been fans of him for years and it's a rare thing that "Let's Make a Deal" isn't on as a background to our morning.  Sean and I discussed how Wayne was an interesting choice as he has made his career on clean comedy and we were looking forward to see how he would transfer to a saltier forum.  We watch all the roasts and although I was working that night, I knew I would catch up with it afterwards.  It airs here in Canada Saturday night on the Comedy Network.

You will imagine my surprise when, a few days later, one of my friends posted the story of Wayne's performance in the Down Wit Dat - The Group on Facebook.  During his bit, Wayne said the following (to comedian Jeff Ross):

Now the thing is Jeff ... these are all jokes, and I really like you. I really, really like you. But a lot of people hate you, especially Sarah Palin because you remind her of what Trig is going to look like when he’s 40.

When he was actually booed by the audience, he fired back:

Oh, now you boo me? F*ck y’all. I don’t want to hear that. These people say all of this sh*t about me, and you boo me because of Trig?

I know it's a roast.  The comedy, is lewd, crude and rude... and that is the point.  As I've stated before, I watch them all.  I frequently flinch when I do watch them, usually when the shots turn racial or target religion.   When I saw the above, it wasn't a flinch.  It was that cold, slightly disconnected stab that I get when someone says something completely thoughtless or discriminatory about learning disabilities.  It hurt.  It hurt like it always does, but this one hurt worse.  It's always worse when it's someone you like.

I did what I normally do.  I sent an 'I am disappoint, son' tweet and supported my friends who were voicing their protests.  With these things, I don't agree with trolling or flaming as it serves little purpose for the cause.  In the over 18 months that I've had of this special needs parenting gig, I've learned a few things.  One of them is that you have to approach these things in a calm manner.  If you don't, you will get the oppourtunity to blow of steam.  You also run the risk of looking like a complete crackpot and having your original message lost.  I'm usually a lot gentler with my advocacy than I actually want to be as the message seems to be received better.  Flies and honey and all that...  In any event, I left much of the heavy lifting to my peeps in the community and went on with what turned out to be a very busy week.

Sadly, it's stayed with me.  It's sat there, cold and leaden in my belly and it won't go away.  Mr. Brady did not attack my son, true.  He did not directly tell derogatory jokes directly about those with Down syndrome. (As in "You know what's funny about Down syndrome?...) Also true.  However, what he did do was basically called another comic ugly, by comparing him to a future 40-something with DS.  Therefore, Down syndrome is ugly.  Not cool.  Not.

This has been bothering me as it completely disregards everything we do here.  Down syndrome is a visual disability;  the extra chromosome changes specific features which are visible.  People with DS are discriminated against because of the way they look.  Mr. Brady's joke is one more (albeit a big one) in a sea of prejudice that reinforces a stereotype.  Sort of like this joke from the same roast:

Jeff, you look like something a mongoloid kid put together at Build-A-Bear.” -Anthony Jeselnik

I posted a pic to my personal FB wall last week that stated "Denying equal rights to another group of human beings based on your religious beliefs is still called bigotry". It got liked and shared a few times and made the rounds.  I posted another one, with Henry Rollins that included "You always know the mark of a coward.  A coward hides behind freedom.  A brave person stands in front of freedom and defends it for others."  I like that one too.  I mention both of these because I often run into situations where I find myself calling another on their insensitivity or prejudice and the response usually contains one or all of the following:  "free speech", "you're too sensitive", "...wasn't directed at",  "political correctness" and general misguided righteous indignation. It never ceases to amaze me, the amount of teeth gnashing and haranguing that occurs when I point out to someone that they are being mean to a great group of people and the response is "you are taking away my freedom!"  Also sad is what occurs when I post quotes or inspirational messages like those in regards to gay marriage, racial equality or religious tolerance, I get lots of support and even a "hell yeah!" here and there.  Post it about Down syndrome and the only people that care are members and friends of the Down syndrome community.  For some reason, those with learning disabilities are fair game. They are still 'safe' to make fun of.

When I was growing up, the word used to be "gay".  You're so... That's so... I'm so... and it was very disparaging.  Thanks to years of hard work by people such as GLAAD, things are getting a little bit better for the gay community.  Now, it's the R-word and in this world of whiny "we're not allowed to say this anymore thanks to those advocates over there", Down syndrome itself is a put down.  No, really.  Since when is a genetic disorder a joke or expletive?  People don't do that with other things.  However, the following I pulled off yet another random Down syndrome search on Twitter this morning:
Like a nice little pout is cute but when u r twisting and bending up your lips you just look like you suffer from down syndrome!

Shut up Jarvis, you look like the down syndrome version of Mario Chalmers!

#wheniwasyounger i thought people with down syndrome were all one guy lol, i used to think "bloody hell i see this dude everywhere!?"

Giants fans don't blame me because your QB looks like he has down syndrome.

New FAA regulations allow mongoloids and individuals with down syndrome to fly cargo on all flights over 2hrs #TardWeek

I just watched five minutes of the local news and think I caught Down Syndrome.

sometimes i have thoughts of what some of you remind me of. i.e: rats, monkeys, down syndrome. & i feel bad.. b/c the resemblance is uncanny

Do people with cystic fibrosis have to put up with this?  Or Lupus?  How about cerebral palsy?  Do you see these people tell jokes about spina bifida or muscular dystrophy or childhood cancers?  If these people were using racial, religious or cultural stereotypes, would their tweets stay up? 

No.  Down syndrome is apparently funny.  So much so that every single time one of us posts a letter or comment pointing out an act of discrimination, we are told (usually in almost illegible English/textspeak) we are oversensitive jerks.  At worst, we are told that we infringe on others free speech, but still basically oversensitive jerks.

Sadly, especially for Mr. Brady, the main message of the DS community is being outshouted by a lot of other crap.  Fans of Mrs. Palin, neo-nazis and people that generally do not like African-Americans in general are spewing all sorts of hatred at Wayne at the moment in our name.  I got the first inkling of this the other day when I was looking for a comment I had posted to show my husband and he quietly pointed out how many Confederate flags were on the page.  This isn't cool either. 

Neither is waving away any sort of discourse from any of the DS advocacy groups as 'Republican agenda'.  I am not a Republican.  I'm not even American.  I do not have a political agenda outside having people with DS get a fair shake in life and making sure that they and their families do not have to put up with ignorance and hatred every single day of their lives.  I am also not a fan of Mrs. Palin.  I do not agree with her politics, I do not have the same religious beliefs and I do not think she is a good role model for my own daughter.  However, she is the mother of a child with Down syndrome that she loves and does not hide away from the world.  For that alone, I respect her.  Just like any other community, the Down syndrome one is a diverse bunch of people from all walks of life, all countries of the world, all religions, races and creeds.  Many of those don't get along and that is evident too.  However, the main message cannot afford to be lost here:  Down syndrome is no joke.  It is not funny.  When you call another ugly by comparing them to Down syndrome, when you call someone stupid by comparing them to Down syndrome, you demean people with Down syndrome.  Hiding behind your religion, politics, freedom of speech does not change prejudice.  It does not excuse bad behaviour.  Neither does hiding behind retweets from people trying to spin hate speech as simple misinterpretation:

The joke was a shot at Jeff Ross, not Trig Palin & getting offended at a roast is to be expected (it wasn't political) .
  I'm glad you're not apologizing. If all subjects are taboo then were fucked.

My only agenda is civil rights and liberties and changing public perception about my son.  Jokes like this only put us back further every single time someone famous decides the learning disabled are fair game as they are not on some mythical taboo list.  Whether you wish to accept it or not, it is a form of lateral violence.  It encourages bullying.  It encourages prejudice.  It encourages the perpetuation of the image of a helpless, ugly, mindless individual with Down syndrome that will not amount to anything.  I used to like Wayne Brady's stuff;  I'm not so inclined any more.  I think he owes those with Down syndrome an apology.  I also think I won't be watching any more roasts as they too aren't funny any more.  We don't need any more Al Jolsen jokes for that matter either.

[Addendum:  8/17/12:  Mr. Brady has posted the following to his Facebook page:

This letter has taken me a few days to compose because of the conflicting emotions that I've experienced since the day of the Roast and it's subsequent airing. The environment of the Roast is a comedic (hopefully), tasteless (mostly always), affair that encourages everyone to out-filth each other. Not normally what I'm known for, right? But, when I was invited, I jumped at the chance to play outside of my perceived "norm" and have fun. The Jeff joke was written for me and at the end of the day I take full responsibility for saying it. It wasn't meant as a slam to Trig and at the time I didn't see it that way.

I could defend it as a performer, but I would rather apologize from the bottom of my heart as a father. I understand how a parent, who loves their child, who tries to nurture and shield them when they cannot defend themselves, would take offense.. I have many times experienced this feeling. I've had awful things said about my daughter.. Violent and most times racial stabs. Being in the spotlight I have built a thick skin to these sorts of things. My daughter ( who's now old enough to understand ) is another story. That being said I write this letter with sensitivity and a strong stance of responsibility for my actions.

I thank everyone who's expressed their opinion for reminding me that my voice is heard... It's easy to forget sometimes in front of cameras and lights.

To the Palins, please know that no malice or harm was meant. To the other families who were touched negatively, I hope you'll be able to accept this apology as well.

I've always said that people in the public eye should be held responsible for what you say and I'm no hypocrite. Thanks for reading and letting me express my side.

Take care all,

On behalf of my son and my family, Mr. Brady, I accept your apology.]

Tuesday, August 14, 2012

Teeth Suck (But They Don't Have To)

As I'm writing this, I'm in agony.  One of my back molars has caved in, there is an exposed nerve and I am waiting for an appointment with my dentist on Wednesday.  It's horrifying and yucky all at the same time.  I'm not happy with my teeth in general these days... Start with antibiotic discolouring, add vomiting every single day for 6 months when pregnant and then sucking back Cokes and sugary coffee in an effort to stay conscious (not to mention 'nurse food' like doughnuts and pizza and cookies and candies and all sorts of junk at 3 am)... Quel surprise!  Things are a mess, I'm chewing on one side of my face and stealing the kid's Orajel.

I'm not the only one in dental hell either.  If you are keeping tally with Team Logan's tooth parade, you'll know that someone is either losing or gaining teeth all the time right now.  Quinn has lost his "grey" tooth (a incisor that he damaged when he was a toddler) and we are anxiously awaiting the appearance of the secondary tooth that is to replace it.  Zoe has decided to skip her canines and premolars and go straight for molars, while Wyatt is finally deciding to give his two [razorlike!] teeth on the bottom some playmates on the top.  Slooowly you can see them coming up; as of this writing one has cautiously poked through.  I'm not the only grumpy one either;  the twins both have red cheeks, copious amounts of drool, sore bums, loose-ish stools and are generally irritable as all get out.  A few years ago when my oldest and our friends twins were teething, we had a catch phrase: "teeth suck".   This was a direct result of those early desperate acetaminophen and gripe water soaked parenting years where we would have entertained just about any idea to get them all to feel better and stop crying.  Wanna gnaw on my thumb for three solid hours? Please, go ahead, if it makes you happy! Now it's my turn with teething twins and my fridge is full of chewies of various sizes and descriptions, frozen washcloths and frozen waffles.  I should have stock in Tylenol and diaper cream and both Sean and I could use an extra arm right about now.  As far as we are concerned right now, teeth really suck!

Since we're all about les dents at the moment, I might as well prolong the agony and talk about Down syndrome and dentistry.  I have had the same dentist since I've been 11 years old (when I actually go) and that hasn't been a problem, at least for me.  However, is that practice the perfect choice for Wyatt?  When should he start going to the dentist and what should I be looking for in a dentist?  What kind of things do you have to deal with in Down syndrome that you may not have to deal with typically? Like just about everything else, there is a learning curve for me.  Which means that there is one for many other people as well;  it would only be fair to share my findings.  I'll also switch to my "medical voice", which can be a bit dry and for that I'll apologise for now.  To start, I thought I'd go over some of the more common problems. 

Structural Issues:

To begin with, those with DS generally experience what is known as delayed eruption.  With this, the teeth emerge late compared with typical children.  All children are different, however it is not surprising to see "typical" children teething between 6-12 months, while children with Down syndrome generally start between 12-14 months and can possibly wait until 24 months.  Typical children have all 20 of their deciduous or primary teeth by age two or three, while children with DS may not have all their teeth until they are 4 or 5.  The permanent teeth are also delayed, with the front permanent teeth and permanent six year molars possibly not erupting until age 8 or 9.  The teeth may also arrive in a different order than expected.

The teeth may also be smaller than usual (microdentia) or missing;  in some cases malformed.  Crowns are often smaller as are the roots (which can also be conical).  Taurodentism is also common, as are 'peg teeth'. 

The tongue is also an area of concern as it can be larger.  It can also appear larger while being of average size as the upper jaw could be smaller.  Grooves and fissures are common, especially with the high incidence of mouth breathing (due to smaller than average nasal passages).  These can be severe at times, which would contribute greatly to halitosis.  Mouth breathing can also lend to an overall decrease in saliva (xerostomia) which impacts on the ability of the mouth to clean itself.

Issues with bite can also occur.  There may be gaps in the bite, due to spacing from smaller than average teeth.  Malocclusions such as an "open bite" are common, as is Prognathism or "underbite", where the bottom jaw is moved forward and the top teeth rest behind the bottom.  There also might be overcrowding of the teeth in those with a smaller than normal jaw which could lead to impaction of the secondary teeth.  These are all completely treatable with orthodontics; however orthodontic appliances can interfere with speech development so that it is recommended by many sources to delay such treatment.

Tooth grinding or Bruxism is a common here and throughout the neuro-typical community as well.  Children often grind their teeth and many stop as they grow older; if this does not cease, however, severe damage to the teeth can occur over time.  If this is the case, a dentist may prescribe a mouth guard.  DS, can affect ligaments around the teeth.  As a side note, Atlantioaxial Instability can cause some positioning challenges whilst in the dentist's chair and possibly interfere with navigating throughout the office safely.

Sleep apnea should also be assessed when positioning and seriously assessed when considering sedation and sleep dentistry.  

Disease-Related Issues

Peridontal disease, or  issues with the gums is very common in those individuals with Trisomy 21.  This is due largely to a predisposition based on an diminished immune defense (see below).  Also, there is an overall increased amount of plaque.  Onset is rapid and often results in the loss of adult teeth by the teenage years.  Frequent brushing (targeting the gum line) and flossing are very important to prevent problems in this area.  Regular dental check ups and X-rays are also important to monitor such potential problems such as bone loss. Using specialized antimicrobial mouth rinses such as chlorhexidine might also be helpful.   

Dental caries or 'cavities' as they are more commonly known, are also common.  In years past, it was assumed that individuals with DS had a natural resistance to caries as they had a lower incidence.  Sadly, this research was done in an era where most people with learning disabilities were institutionalized and therefore, had a restricted diet.  In this more forward thinking time, everyone is exposed to the same abundance of carbohydrates and therefore, the same risk of forming cavities.  Reducing carbohydrate intake, frequent flossing and brushing (with a fluoridated toothpaste) will significantly reduce the formation of caries.

There is a distinct link between oral disease and heart disease.  People who have heart conditions are usually recommended to take antibiotics before any invasive dental procedure, including cleaning or scaling (tartar removal).  Due to the high incidence of heart problems associated with Down syndrome (specifically, mitral valve prolapse), it is not surprising that many individuals with DS are prescribed antibiotics before a trip to the dentist to prevent bacterial endocarditis

As mentioned previously, those with Down syndrome often have a decreased immune response due to a decreased number of T cells, a specialized white blood cell that fights infection.  As a result, there is an overall increase in oral infections including periodontal disease, acute necrotizing ulcerating gingivitis (ANUG), candida (yeast), and ulcers.  Wound healing times may also be prolonged, especially if the individual also has diabetes.  Frequent upper respiratory infections often lead to mouth breathing,  xerostomia and fissures of the lips and tongue.

Seizures are common in the DS community.  Providing your dentist with a complete medical history and list of medications will be important, as will a list of triggers, etc.  This way, the staff can be more prepared if a seizure were to occur in the office or in the chair during a procedure.

It is recommended that oral hygiene be stressed and any problems with the primary teeth to be addressed quickly.  Due to the generally late appearance of the secondary teeth it is advisable to encourage the primary teeth to stay around as long as possible.

Other Considerations

When looking for a dentist for your child, it may be worth considering a pediatric dentist who specializes in treating children.  This is especially ideal if there are sensory issues with your child or if your child is often fearful.  Speech, vision and hearing difficulties could easily hinder communication.  Due to the cognitive diversity found within Down syndrome, there could possibly be interpretation issues as well, which could hinder treatment.  At the very least, having a dental team with experience with special needs is probably a wise decision. 

Behaviour management can also be a consideration.  Suggestions to improve the overall experience include:
  • Scheduling the appointment early in the day so that all parties are well rested.
  • Active listening to ensure ideas and instructions are communicated and understood clearly.
  • Simple, concrete speech to facilitate short-term memory.
  • Whole team involvement/introductions to help acclimatise and reduce any anxiety.
  • Limiting distractions
  • Consistency of care
  • Reward co-operative behaviour and comfort those who require it
  • Avoid immobilization techniques
  • Use a collaborative approach;  sharing information, positive techniques and previous experience between staff and caregivers can improve any clinical experience.

As with any child, it is recommended that professional dental care begin with the eruption of the first teeth;  this has been stressed in much of the literature concerning Down syndrome as well.  This will not only acclimatise the child to the environment, but also ensure that they have exceptional care from the very start.


That's a lot to think about. 

However, it is in our best interest.  Many, if not all of these conditions are present in the 'typical' population and are by no means exclusive to those with Trisomy 21. I won't know if my dentist is the best for Wyatt until I get there and start asking questions.  If not, I will move on.  However, for now, I will encourage this process by offering up the best example that I can to the kids.  That starts Wednesday when I face the drill of my DDS. 

Writing this article in spots, if you forgive the analogy, was like pulling teeth.  Hopefully the information provided here will help promote oral health for your child (and you)... and keep that very thing from happening. 

Debord, Dr. Jessica, DDS, Dental Issues and Down syndrome, National Down Syndrome Society (NDSS), ©2012.

Dental caries prevalence and treatment needs of Down syndrome children in Chennai, India, Indian Journal of Dental Research 2008; 19(3); 224-229

Frydman A, Nowzari H., Down syndrome-associated periodontitis: a critical review of the literature, Compendium of  Continuing  Education in  Dentistry, 2012; 33(5): 356-361.

Pilcher ES. Dental Care for the Patient with Down Syndrome, Down Syndrome Research and Practice. 1998; 5(3); 111-116.

Practical Oral Care for People With Down Syndrome, National Institute of Dental and Craniofacial Research, National Institute of Health, #09-5193 

Saturday, August 4, 2012

Olympic Spirit

As much of the planet knows, we are smack dab in the middle of the Olympics.  My news feed has been awash daily with national pride, good natured ribbing and sadly, some not-so good natured politics.  My favourite posts so far are from the parents who are winning silver in their hair from the "sports" that their kids are reenacting in living rooms around the world.  We too have been affected by the spirit of the 30th Olympiad, but not in a way that you might think;  there have been all sorts of medal winning moments here as of late but you won't see any of them replayed on the news.

Last Monday we trekked to the pediatrician's office.  Fortunately for everyone involved, it wasn't a repeat of our previous trip.  We decided to be ahead of the game by confirming the appointment properly twice and arrived over 15 minutes ahead of schedule.  For our efforts, we were rewarded by getting in early;  the secretary mumbled bitchily about the people ahead of us being late, so our appointment time would be moved up.  (Sha-ZAM!)

Zoe, our little mighty mite, is now 10.06 kg (22 lbs) and her older brother Wyatt is 9.06kg (20lbs).  Zoe's weight for her (corrected) age scores her within the 50-75th percentile , while Wyatt is bang on at the 50th percentile for his corrected age on the Ds charts.  Their length has also shown improvement as Zoe, at 75 cm (30 inches) holds her ground at bang on the 25th percentile, while Wyatt has jumped up to the 25-50th percentile at 73 cm (29 inches).  That's great news as I was beginning to fear that they would be tiny forever. 

I found myself irked at a couple of questions that the pediatrician asked.  Such as "does he know his name?" I had to stop and count to ten at these moments and remind myself that she only sees him once every 3 months.  He has come so far since our last appointment that she has a lot of catching up to do.  As we went through the list of accomplishments and goals that we and our ICDSP worker have for him, the subject of the sleep study came up.  We did not receive any results of any kind after his ordeal study and to be honest, I was a little annoyed by it.  As it turned out, she did receive results (in June).  According to the report, Wyatt's apnea levels were within normal limits at all times.  However they did note that he was some snoring at various points, the cause of which was difficult to assess due to... [are you ready for it?]...  "loud parental snoring".  I think I laughed and quipped something about a family of large tonsils, but I could have quite nicely crawled under my chair and died of embarassment.  Did you see the pallet I had to sleep on?  Puh-leeze.  In any event, there are several things with this: 

1) Any higher pressure in his lungs is not due to sleep apnea.
2) He does not have sleep apnea so surgery is not going to be as scary. 
3) I'm betting they will move his surgery date up (due to the pressure being caused by other things).  

Finally, my favourite:
4)  Wyatt may not have sleep apnea, but I probably do. 

We've been chuckling about this for quite some time, despite my mortification.  Sean was more than happy to regale our ICDSP worker when she arrived Monday.  I was in and out with Quinn as we were in the garden staking up our tomato plants, but when not listening to Sean's stories of my snoring, she worked on several things with Wyatt.  He's had a little plateau as of late with the mobility, so I could almost hear the frustration in her voice as she said "He's so close to sitting up, he's got all the parts, he just needs to put it all together".  I agreed and then we discussed working on his ball rolling and sitting exercises.  

The very next day, Wyatt decided to take matters into his own hands.  Mid morning, Quinn looked over to find Wyatt sitting up in the corner.  Excitedly he pointed it out and we all clapped (including Wy, who instead of clapping, raises his hands and waves/Kermit the frog flaps yaaaaaaayyyy! ).  I didn't think much of it as he was right beside a lot of objects that he could have pulled/pushed himself up on.  Later on, in the middle of the floor, he did it again!  And again!  Four times in one day, twice witnessed!  It was amazing.  That was a gold medal performance if we had ever seen one.  It didn't stop there either: the next morning as the babies were exploring the living room, Wyatt was really straining to peek up over the edge of one of the toy baskets.  I casually remarked "Geez Wyatt, if you want to see what's in there, you should sit up!".

So he did.

He leveled his gaze at me, pushed backwards with his arms and pushed himself into a sit.  Then he grabbed what he was going after out of the basket.  It was phenomenal.

Wyatt decided to go for the triple play when he learned to roll the ball later on that same afternoon.  We were sitting with our legs in a V-shape, to allow the ball to roll between us.  Now, previous to this, we would start rolling a ball and Zoe would zip by and run off with it.  It would not matter what type of ball it was either;  large, rubber, tennis, O-ball, we have them all.  We'd start with one, she'd plop herself down in my lap, intercept the ball and be gone!  I'd look at Wy, take another ball out of the basket and roll that one to him.  He'd eventually hit it back to me and whoosh!  Here's Zoe again, going off in a different direction with a ball in each hand.  I thought initially "she's got both her hands full, now's our chance" and went for the third ball. Naturally, I was wrong and she, believing what we had was better, dropped one of the balls and went after the new one.  This would continue on until the basket was empty and she had a stash of balls over in the corner like some sort of obsessed sporting goods squirrel. It also wouldn't matter if I grabbed up one of the ones she'd already taken, as she'd take those back as well.  However, that particular afternoon, Quinn managed to keep her occupied for a few minutes.  We were using a ball with a rattle in it, so for the first bit, Wyatt would just pick it up and shake it.  Then he would rattle it a few times then push it towards me with the back of his hand.  Then he would just roll it towards me.  We were only playing for a short time, but it too was outstanding.  I tried to mix it up a bit with telling him to "shake it!" then "roll it", which he did, flawlessly.  Once again, he has shown us his own unique learning curve of "nothing, nothing, nothing... mastery!" He has shown us again to never lose hope.  He will get there, you just need a little more patience.

Zoe is breaking family records left and right for her physical prowess.  She figured out one day not too long ago that she could climb me like a rock wall.  She digs in her tiny fingers and will use her teeth and toenails if necessary.  It's cute, scary and, well, painful (for me) at times.  Once she figured that out, it was only a matter of time before she made it up to the couch.  Then the couch became a trampoline.  To her credit, she's only vaulted off the couch twice, but I can't tell you how many times I have grabbed her off the arm of the couch as she tries to use it as a pommel horse.  Never mind the silver, I may not have any hair left by the time this one reaches adolescence.

She's also shown a little more interest in her twin as of late.  They are always aware of each other, but other than a fleeting moment here and there (such as her trying to pull him up to a stand by his ears or removing some cherished object that he is currently enjoying), they as most children their age, tend to parallel play.  I've found them working together on several instances, an idea that I have to admit that I can find a bit unsettling.  One of their newest tricks is what we call "boosting the signal".  Before, if one cried, the other would look over as if to say "what's your problem?"  Like this:

Whoa!  DUDE!
"WTF Dude?" (2 days before their first birthday)
Now, if one cries, the other will do the same to make sure they get heard.  I've watched the other look at the crier first to assess the situation and then respond with a yell of a similar pitch, volume and timbre.  It is... freaky.  Especially when there are no tears on the second twin and the keening stops the absolute second the first twin does.

I've also found Zoe sitting down next to Wyatt and chatting to him.  We were coming in from one of our many shopping trips the other day and I had only managed to get Zoe out of her car seat in the living room before having to quickly run back to the door (to assist Sean with some armful of awkwardness he was trying to bring in).  By the time I had walked the 30 feet back to where they were, Zoe had sat down on the floor next to Wy in his car seat and was babbling away at him.  At one point she leaned in and patted him on the head as if to say "S'ok.  Mom will be back soon.".  On my return however, she wobbled off pretending she had more important things to do.  Typical.  Wyatt however, beamed at her from his chair and said "Zazazaza!".

If you're keeping track of Team Logan's teeth tally, we currently have Quinn at -1 (+3 adult), Wyatt at +2 and Zoe at... somewhere between 8 and infinity.  Seriously, it's really sharp in there and there was a period of a week where I was trying to peer in/feel around for a total.  I finally figured out that if I dangled a cookie up over her head, she'd open her mouth and look up.  Works for both toddlers and pets.  I discovered then that she has 11:  eight in the front and three molars.  Apparently, cuspids are still for losers.

Quinn is having all sorts of adventures that only a boy of six can appreciate.  He's discovered that he loves day camp, which is awesome.  They swim every day, hike, climb the rock wall, do crafts, archery... all sorts of outdoorsy sporty stuff, which he likes very much.  We like the fact that it gives him a break from the babies, puts him with kids his own age and then runs him bloody ragged.  He tells us of his day in a sleepy voice once he gets home and assuming he stays conscious through his dinner, he retires early to do it all over again.  It is awesome.  He is growing up so damn fast; at least this way he has some great summer memories that don't involve the TV or waiting patiently for one of us to finish something so that it can be his turn.

When he's not exploring the great outdoors or playing with his siblings, Quinn continues to draw.

Quinn's Olympic Tribute
On my beer fridge, yet.
When I found this international salute, I was stumbling blurry eyed to my Tassimo, which sits on top of the mini-fridge.  I called him over and asked him about his artwork;  he proceeded to whip out his globe and not only show me each of these countries, but also the capitals.  Wow.  That's a lot from a 6 year old, especially before 8 am (and more specifically, my coffee).

We are not a sporting family, but we have won more than our fair share of victories here lately. They probably seem not much to most people, but to us they are world class performances.  Wyatt works harder every day than other kids his age.  Right now they are all doing their own thing as they grow:  Quinn is picking at his dinner in larger quantities and is now going to bed early, Zoe eats everything that isn't nailed down and has given up sleeping at night and Wyatt sleeps only at night and during mealtimes.  Just as the Olympics started, lots of folks were talking about the "Olympic Mom" Best Job Commercial from P&G. I can relate to this.  My family is a lot like this.  Watching Wyatt sit up for himself the first time, after months and months of trying... I can't even describe properly how that felt.  No crowds roared.  No medals were awarded,  but, I felt so incredibly proud as I hugged my child and cried.  I relate a lot more to this one too, one that does not get the same amount of airplay:

The rest of the world may not see Wyatt as I do... yet.  One day they will.  One day he and others with a learning disability will be able to live their dreams, free of prejudice.  Soon.  Until then, we will continue to press on, through the pain and the rewards alike.  Come what may, my children, are always going to be 1,2,3 on the podium as far as this judge is concerned.
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