Day 31: We Made It! (Almost)

Wow, Day 31!  I almost made it through the month.  Not like Down syndrome awareness ever stops - it's continuous, fluid, a perpetual force that maintains a momentum created through the daily efforts of countless advocates and self-advocates world-wide.  And it's important.  I'm not militant by any means.  I intensely dislike shoving any kind of information down anyone's throats, preferring a more gentle approach.  I advocate through my day-to-day actions and interactions, through my blog, through my social networks...  But the 31 for 21 push is quite the exercise in staying power, and I certainly hope I have reached at least one new person in some way, showing people how ordinary our lives are, how Down syndrome should be celebrated, not feared, made fun of, ignored.

Tonight is Halloween.  Samantha is going to be a doctor (surprise surprise).  I'm hoping I can convince her to put her wig from Brave on as well, and she can be Dr. Merida, but we'll see...  I think I'll have a little breather for a few days, then pick up again next week with my usual posting schedule, but I promise, there will be photos.  :-)

Happy Halloween, Happy Down Syndrome Awareness Month, Happy Post-Sandy Sunny Day, Happy Everything.   

Day 30: Little Girl Stuff

I'm honestly not sure what to say today.  I really have absolutely nothing prepared.  You'd think that being home yesterday all day because of the hurricane would give me time to blog, but between trying to get some of my job work done, cleaning a lot around the house, getting Samantha's homework done and giving in occasionally to her pleas to come play with her, I had little time to even think about blogging.  I need to write a post about Samantha's experience on Sunday, bowling for the first time, but editing photos isn't high on my list of stuff that needs to be done asap right now, and edited pictures are necessary for the post. 

I tried to be productive yesterday, and managed to have Sammi parked in front of the TV for only half of it, but that TV time also included a viewing of Disney's temporarily re-released, digitally re-mastered, wallet-gouging dvd, Cinderella, which I purchased over the weekend.  Samantha has never seen Cinderella, although, like any other little girl, knows and loves her.  I, on the other hand, had seen the movie when I was her age, owned the soundtrack on vinyl, along with the accompanying picture book sewn into the album cover itself, and loved it.  Something about the music, the clothes, the prince...you know, little girl stuff.   As with all other little girl rights-of-passage, I was totally excited to introduce Sammi to the film, to watch her as she watched it, and to watch it again, myself, after so much time. 

Other than two occasions in which Samantha got up and turned the video off (apparently old kings and arch dukes aren't very interesting to little girls), she seemed to love it.  What's not to love?  My favorite part of the observation, in addition to my post-film instruction of how to say bibbity bobbitty boo, was when one of the ugly step-sisters was about to try the glass slipper on, saying to the arch duke, "oh, the slipper is MINE!"  Samantha shrieked, "No!  That's Cinderella's slipper!"  Guess no check-for-understanding was needed this time...

And guess what??  Apprently Brave is being released in a few weeks!! 

That one can wait for Christmas.

Day 29: Interesting Things To Do With Jello

Stop snickering, and uncover your eyes.  Nothing inappropriate here!  Surfing blogs the other day, I came across the recipe for Jello cookies, and was intrigued, especially considering that I had just about every ingredient already in my cupboards except for the Jello.  One easy shopping trip later, and we were off!

Don't let the photo fool you, Samantha was not much of a help, craning her neck to see the TV in the next room as she half-heartedly rolled the colorful dough balls in sugar.  They're delicious and kinda pretty and seem to be perfectly-suited for the upcoming holidays, but man, they've got a lot of butter and sugar in them!  And with all of the acid in the Jello, they create an instant heartburn environment (next time I'll use less powder than the recipe calls for - come to think of it, perhaps I used the wrong quantity?  I'll have to look again...).  Also, they're a bit of a pain to make.  Easy, but time-consuming and messy.  I still look like a mass-murderer, trying to wash the pools of red food coloring off my hands. 

The recipe can be found here.  In our case, Red = mango/cherry/strawberry flavor (I didn't have a full packet of any of those, so I figured they'd be a winning, if not heartburn-inducing, combination), Green = lime, Yellow = lemon, and there was a batch of Orange (not pictured) = well, you know, orange.

Day 28: Poignant Encounters

Yep, I missed yet another Saturday of 31 for 21 blogging.  Not like I didn't think about it all day, because I did, but I was just busy, and don't often get much computer time on the weekends. 

Grocery shopping with Samantha gets easier and easier the older she gets, as with so many other activities, of course.  There are certainly times when she is completely uninterested, grumpy and resistant, but more and more she becomes quite helpful.  Let me clarify first by saying that I don't do the major grocery shops in our household - Steve does.  And he's usually able to get them done on his own, with Samantha at home with either myself or her aide during the week.  But there are always a zillion quick-runs to the store for this, that or the other thing (usually milk - one day we're gonna have to buy a cow...).  Yesterday I took her to the store after giving her a verbal list of what we needed:  milk (see how ready for the cow we are?), juice, bread, coffee and Jello (another post will explain the yummy and horribly bad-for-you Jello cookies we I made).  She, with her amazing memory, helped to keep me on track in the store, and I was, in turn, able to use the list against her every time she got sidetracked, demanding to purchase another un-needed item.  If it wasn't on the list, we didn't need it. 

Coming down the juice aisle, Samantha pushing her little green shopper-in-training cart, she passed by an older woman, saying, "Excuse me!  Sorry!" as she passed, even with the wide 3-feet between them.  Tailing behind, I was explaining to her that she didn't need to apologize if we weren't anywhere near the other customer.  The woman's head turned as we passed, a big smile on her face.  "How old is she?"  she asked.  "Six," I responded.  "Wow, she's a *big* girl!"  Still smiling.  "Yes, she certainly *is!*" I said, smiling back, thinking something was up at that point.  We paused for a moment at the end of the aisle before proceeding, to give the woman a moment to say what I thought she would say. 

"I have a sister." 

Ah, no explanation needed.

"Oh!  Wow.  How old is your sister?"  I guess it's not really a weird question, given that life-expectancy of people with Down syndrome gets older every day, and I was truly curious.

"She was 67 when she passed."

Man, that's rough.  But wow, that is an impressive age.  Really impressive.  She went on to say that congenital heart disease was what ultimately ended her life.  I gave my condolences, expressed amazement at her having reached such a phenomenal age, she told me how beautiful Samantha is, and we moved on, with tears in my eyes. 

These kinds of encounters don't happen often, but when they do, they really make an impression.  I don't know the nature of her relationship with her sister.  Were they close?  Was her sister kept at home?  Was she institutionalized?  What was she like? 

Those aren't my questions to ask, and the encounter was too brief to learn more.  But the fact remained that this woman had been touched by her sister, touched by Samantha in some way.  A wistful reminder?  A regret?  Many happy memories?  Who knows? 

But the impression that brief, poignant encounter left on me will last for some time

Day 26: The Mayor

Some day I'll learn to take better cell phone photos...

How does she do it?  Is it some magic potion?  A spell?  How does she manage to captivate and endear herself to nearly every person with whom she comes into contact?  It's pretty mesmerizing to watch, the endless stream of students of all ages and teachers moving past her as they rush to their classes, all calling out, "Hi, Sammi!" or, "Hey, Samantha!  Samantha!  Over here!"  Sometimes she acknowledges them with a big smile and a cheery hello, along with their name, sometimes she dismisses them with a casual wave and an unsmiling "oh, hi."  I think those are the ones whose names have escaped her.

Some of her teachers call her the Mayor of the school.  I understand that.  And, while it makes some tiny alarm bells go off in my head about stereotypes (I'm sure I've heard many other stories of children with Down syndrome or other disabilities being labeled the "mayor" of their school, but that extra chromosome seriously does include that "social" gene...), I am grateful for it.  There's a sense of safety and protection from her peers ingrained in the title, as evidenced by the behaviors of those around her.  Knowing that those children will be there for her throughout grade school, the older ones to be upper classmen when she enters the dreaded middle school years, ready to have her back, the teachers of upcoming grades who are already familiar with her and ready to greet her into their classrooms when the time comes...

And so, while there's no campaigning to do now, the title honorarily bestowed upon her, it may be a sign of things to come.  Next stop, student council...?  Buckingham Palace to hold court?  Okay, so I jump ahead a bit.  One step at a time, right?

Day 25: To Test or Not to Test? That is the Question...

IQ tests.  Labels.  Services.  Re-evaluations.  IEPs. 

All words that strike fear and foreboding into the hearts of parents of children with special needs.  So many things to think about, so many details, so much to learn, so many ways to impact a child's educational future.  And, once Sammi had successfully entered the public school system at age 2, we did hear mention of IQ testing and re-evaluations...for when she was 6 1/2.  A whole 4 1/2 years beyond the point we were at then, a whole 4 1/2 years to not worry, to think we had SO much time yet, to relax and deal with IEPs and the general day-to-day only. 

But oh, how quickly those 4 1/2 years passed by!  And here we are, only slightly wiser, trying to learn as much as possible about what we may be facing in a ridiculously short period of time.

I know I can't say too much here in this public forum yet,  but I am curious about your experiences, your knowledge of the matter.  I posted something on Facebook the other day and the response was overwhelming.  SO helpful!  Thank you to all of my friends in FB-land...

So here we are, pondering over the BIG question, to test or not to test?  Here's the story:

The test is given by a school psychologist, as part of the re-evaluation process.  Once a child turns 7, the DD (Developmental Delay) label is no longer applicable, and they must get a new "label" (and I'm sure, in your mind's eye, you can see me cringing over that word...).  The label options are not great.  And supposedly the testing is to just get a good, well-rounded picture of the child's cognitive whereabouts, and does not drive the label or the services.  Which is fine.  But again, the label options are quite restrictive.  The one that most children with Ds or any other cognitive disability would get is ID (intellectual disability).  In and of itself, it's pretty accurate.  BUT, even though you may have a strong and supportive IEP team and positive school environment now, a group of people who know your child and don't view ID as anything negative, who really knows what that label of ID would mean in a prejudicial way, to a new team in another school or school system if you move, or if your child switches schools due to redistricting or grade level?  Will they see that label as a means to pigeon-hole the child into a category of ability that's less than their true capabilities?  Will they use that as an excuse to fight for self-containment?  (I'm not opposed to self-containment in some situations - it all depends on what's best for the child.  But I don't want it for Sammi.  At least not for the foreseeable future.)  Will they write off your child?  Give them less attention?

Who knows? 

But I'll tell you this, I don't want to find out. 

So we could say, no testing, fight the system, remove the whole psychological piece from the evaluation process.  Kind of silly, really, considering re-evaluating has so much to do with cognition!  I'd be blind if I said that they should be able to do it based on a physical and occupational and speech basis only.  Samantha does need some additional supports based on cognitive abilities, and I'm not about to sell her short, lose those supports, just because we don't want her to be evaluated on a very important piece of the puzzle that makes her who she is.

So, if we say no testing, there comes another problem...that of future adult services.  To get Samantha on the ID waiver, a process that would help to secure state funding for her as an adult to receive community supports and services, an IQ test score is required.  If we test Samantha now, at the tender age of 6, the score is likely to not be very high.  I know this.  That's actually good for that waiver, in all honesty.  I know she'll need some sort of support when she graduates from high school.  And if this test score helps to initiate that process, then GREAT. 

What it comes down to right now for us, is that we don't really mind the idea of the testing.  We understand it a bit better right now than we did even last week.  But we don't want the ID label.  We don't want to create a possible cause for additional prejudice somewhere down the road in her school career. 

Another label has been suggested to us, one that we would jump at:  Child With A Disability.  We're not sure what kind of process we will need yet to secure that, but seriously, it sounds right up our alley - less inherent prejudice just in those 4 words.  Key members of Sammi's team are checking on that for us now.  It truly sounds like the best of both worlds, but what does that mean at the county level?  Will they push back?  Does it mean less funding?  What's the bottom line for them? 

I'm not vilifying anyone, and am waiting patiently for an answer, prefering to think that the county will see eye-to-eye with us.  But I'll tell you this, though, the bottom line for us is SAMANTHA and her well-being.  Samantha's education.

Wish us luck, and please, share your own experiences on this topic!  

Day 24: Walking on Sunshine

Saturday was a perfect, sunny, warm, dry day.  Just perfect for one of the most anticipated days of the year.  In the past we hadn't talked the Buddy Walk up too much with Samantha beforehand.  It would have been too hard to explain.  This time I tried to throw some additional information in, about the fact that the Buddy Walk is about Down syndrome, that she has Down syndrome and several of her friends do, too.  That Down syndrome makes her special, and that so many of the people she loves are coming to walk with her on her day.  By the time Saturday rolled around, she was so excited! 

And, having so many of her favorite people surrounding her, carrying a sign with her pictures on it, seeing everyone wearing badges with her face and name on them, she truly felt special.  Like a princess. 

And it showed.

On her face, illuminated, beaming, the whole time.  Not a single cloud, not a single whine, never overwhelmed, smiling throughout.

And it was wonderful.

Sammi with a classmate.  We were so thrilled to have K. and her mother there, as well as Samantha's teacher! 

When Batman asked Sammi who her favorite superhero is, she smiled just about as big a smile as you can get and answered, "Me!!!"  Nevermind that I don't actually think she really knows what a superhero is...but maybe she does...?  She'd have been absolutely right, too.

Her former preschool teacher, Miss K. joined us for the 2nd year in a row.  We're so fortunate to have the support that we do!  Miss K. is now thinking about getting into Special Education!

Put my kid in a classroom full of her peers and ask her to get up in front of them to recite something, and she shuts down.  Stick her on a stage in front of a gazillion people and hand her a microphone, and she's a natural.  Go figure...

Y M C A!

Daddy got all the love. 

These two little scamps were not out to make friends.  Heeeey, who's that under there?

 

I am in pictures, I swear it!  Just not the ones taken from my own camera.  I'll post the team photo when I get it back from the photographer.  

Day 23: Guest Blogger - April from Living By Faith!

I'm thrilled to have April, from Living By Faith, gracing my blog with a guest post today!  April's blog is full of optimism and positivity, the joys of family life, beautiful photos, and how her gorgeous son Levi, who happens to have Down syndrome, has impacted her life.  Thank you, April, for posting here today!

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When I was a baby, in Springfield, Missouri, my mom's next door neighbor, Karen, became her best friend. A few years after we moved away, Karen had her third child, Dusty, who happens to have Down syndrome. We ended up moving back to Missouri when I was in third grade. We lived four hours away from Springfield but went there about every six months to visit my dad's family, and to see Karen & her family. I remember the anticipation and excitement my brother and I felt pulling into Karen's driveway. We knew that while our parents visited in the kitchen, our day would be full of rumble, tumble fun in the country, riding four-wheelers, and getting into all kinds of messes with Dusty and his brother, Matt. I knew Dusty had Down syndrome but don't remember perceiving anything as being"wrong" with him. I never saw him that way. I just saw him as the coolest kid we knew. He was so stinking cute. I loved how he sat with his flexible little legs flopped, knees out on the floor, legs crossed at the ankle. The tops of his feet would effortlessly touch each other. I loved how he melted into me when I carried him or got a hug and how he'd wrap those flexible legs all the way around me and hook his ankles together when I picked him up. I loved his sweet little exaggerated movements and how he made me laugh. He used to give his mom "soap opera" kisses. To do so, he would pucker up but put his hand between his mouth and hers. He would twist his head back and forth as if he were giving her a mad, passionate kiss and always had us roaring with laughter.

This is me with Dusty a few years ago, about six months after Levi was born. I did a seminar in Springfield and got to visit for an afternoon while I was in town.

I don't remember Dusty being happy all the time like the stereotype people seem to have of individuals with Down syndrome. Instead, he was a clever, stubborn little thing, who would lock himself in our car so we couldn't leave. We were there an extra hour once because we couldn't get in our own car to go home! I remember him bravely riding on four wheelers and rolling his flexible body into a ball when he fell off so he wouldn't get a scratch. (My brother and his didn't fair so well!) While spending time with Dusty, I often thought to myself that as a parent I could handle having a child like that. I wondered if God would give me a child with Down syndrome because I didn't think I'd mind. 

I've had other experiences with people that have Down syndrome in my life. All of them were positive experiences. My hope for Levi is that he will give others the same understanding that Dusty and others gave me: that Down syndrome isn't something to be disappointed about, it is something to treasure.

Day 22: Q&A Continued...

Q.  What's the *best* thing someone did for your child with Down syndrome?

A.  Hmm...this is interesting.  I have to think back to Sammi's Early Intervention days, and the fact that the best thing someone did for her, they also did for us.  Samantha's physical therapist was with her from nearly Day 1 until she aged out of EI at 2 years old to enter the public school system.  Renee pushed Samantha, made her work, despite the pitiful protests made by my baby who would much rather have spent her waking moments contemplating more sleep.  I, on the other hand, would cave, give in to Sammi's will, afraid of making her unhappy.  Steve was only too happy to join sides with Renee to get Samantha to where she needed to be, to hit her milestones, and to feel pride in her physical accomplishments.  That was my first experience in learning how to set high expectations for my child and never to underestimate her.

Q.  What was the biggest GREAT surprise with having a child with Down syndrome?

A.  Wow, where do I start?  So many GREAT surprises!!  First and foremost, the community, this great big club I've now got membership to.  Never would I have met such a broad and varied cross section of world culture and experiences, of races, religions, beliefs, educational backgrounds, socio-economic variety, talents, careers, you name it, and we all share one amazing commonality.  We're all here and represented in some way.  I've discovered just how small the world is.  Second, I have been so surprised by what I have learned.  What Samantha has taught me.  How much more people with Down syndrome can do than I'd ever thought possible.  How exciting it is to try to change minds and hearts, to teach others what I have learned during this process over the last 6 years. 

Q.  How did your parents "handle" having a grandchild with Down syndrome?

A.  Both parents and step-parents on both sides of our families embraced her instantly.  Never any question in anyone's mind that she was anything less than a baby first, a beautiful new member of the family.  They have all learned so much, too, from Samantha.  Pure love and support on all sides.  :-)  I know we are fortunate in this.  Sadly, I hear all too often the opposite, grandparents who want nothing to do with their grandchildren who are born with disabilities.  I just can't fathom how those kinds of prejudices still exist, and especially within families!  I can only hope those kinds of people will one day see the light.

Q.  What are you doing after high school with your child with Down syndrome?

A.  I think Samantha will have to answer that for herself in a few years.  I can tell you what I hope for her, but that's kind of like any parent projecting their own wishes on their child (I want my boy to be a football player...) and ultimately the child will do what they want to do.  I feel confident that Sammi will be a strong self-advocate, will have a fulfilling career, will likely be able to live independently.  At 6 she is already showing signs of this.  And we will support her in any way necessary to meet her own goals. 

Q.  Maybe this is nosey, but could you talk about if Sammi's Ds is why you didn't have other kids?

A.  Not nosey at all!  And no, Sammi having Down syndrome isn't at all why we didn't have other children.  Samantha was going to be an only child all along - we only wanted one.  Good thing, too, since it took us long enough to have her in the first place!

Q.  I'm curious to hear more about your GOOD IEP experiences.

A.  Would it be obnoxious of me to say they've all been good?  We've been having IEP meetings since Samantha was 1 1/2 years old.  Amazing that it's been that long!  So far, knock on wood, we've managed to come to agreement quickly and easily on most points at each of our meetings, although misunderstanding occasionally gets in the way and we've had to fight for a few services (like PT or ESY) at a few meetings.  I can only say how important it is that you get a draft IEP from the school a week before your meetings.  This will allow you to see how the IEP team views your child's upcoming goals, and will allow you to make notes, add details, add goals, and tweak things a bit so when you sit down at the table with the team you are prepared and informed.  Some valuable instruction given to us along the way was to ask for more, negotiate down to an acceptable place...it's easier to *reduce* after the fact than it is to *add.*  In other words, aim for the stars, but be prepared to take it down to something reasonable.  Know where you can start, where you can end up.  But if you have too little and want to add services/goals, it's harder to add them after the fact than it is to remove unnecessary ones.  Hope that made sense...

Q.  How was Samantha when you put her in preschool?

A.  Samantha, at 2 years and 3 months old, entered the county preschool program.  At the time there were only a small handful of other children in the class, with a teacher and two aides.  And one of the children, a little girl with complex medical needs, had a nurse with her full-time, as well, so the adults nearly outnumbered the kids!  Attention was pretty much 1:1.  The first day or two, Samantha cried on and off throughout the half-day she was there.  I remember vividly how excited I was when they told us she'd actually taken a nap there!  I had been thinking there was no way, no how my kid was going to sleep on a mat on the floor in an unfamiliar room at a time when someone else dictated what time she should sleep.  But sleep she did.  Each. and. every. day.  And while she was incredibly excited to see Daddy come to pick her up each day, she was equally excited to go to school every morning.  It was there that she learned to count to 10 in both English and Spanish, where she learned to take off her backpack and hang it up on the hook, where she learned to be flexible and to share.  As an only child, we knew we'd transition her to a school environment as quickly as possible - just having peer interaction was critical in her development.

With that, I believe I have exhausted all of my Q&A topics!  If you ever have other questions, feel free to ask!  Thank you again to everyone who parcitipated!

Day 21: Oops...

Yeah, yeah, I missed yesterday.  I thought about posting, but honestly didn't get even close to a computer all day, and was out cold, sound asleep by 9:30pm.  And now I know what sleeping for 8 hours straight feels like.  Okay, it wasn't straight through...I did wake up at 11:30 to turn the TV and light off in the living room where Steve had fallen asleep...but after that I slept straight through.

And oh yeah, it feels good.

Yesterday was the Buddy Walk.  I'm saving that for a post on a day when people actually read my blog.  Not like 31 for 21 engenders mass numbers of readers.  We're putting it all out there for others, but we, ourselves, are too tapped-out to read and comment on anyone else's blogs, so for that I apologize to all of my fellow bloggers who I usually love to read.  I think next month, or perhaps in December, I'll do a 31 for 21 Revisited, where I re-post all of my favorites from this month.  Can't hurt, and it'll give me a little much-needed break so I can get all of the photo books done that I want to send out for Christmas gifts this year.  I have 3 or 4 different ones I want to do, but as easy as Shutterfly is to use, actually figuring out what you want, where you want it, is totally, mentally, taxing, and incredibly time-consuming. 

So, in the next 9 days of 31 for 21, you can expect to see some more Q&A (from my Facebook friends), a Buddy Walk post, hopefully another guest post, something about Queen Sammi holding court at school, and more of this, that and the other thing. 

For now, before we run off to have a playdate with Charlotte, here's a Buddy Walk sneak peek.  I don't have it watermarked b/c I am on my upstairs computer, too lazy to go down to the other one where the watermarked version lives, and just stole it off of Steve's Facebook profile pic.  Which I put up there without him knowing early this morning to replace the photo he's had up there that's about 3 years old.  Good to know your husband's FB password, right?  LOL

Day 19: Q&A Part IV - Randoms

Q.  Best piece of advice you received after learning about Sammi's diagnosis?

A.  Your baby is a *baby* first - just love and take care of her like any other baby!  Everything else will fall into place.  I know that's a pretty standard thing to hear or say with a new diagnosis, and I totally can't remember who said it first (maybe Sammi's cardiologist?), but it really set the stage for us.

Q.  So how did you find Sammi's caregiver? Did you set up a thousand nanny cams? Does she do other domestic stuff, like dinner & dishes (my arch-enemies) or just focus on Sammi?

A.  Haha, no, no nanny cams.  We balked at the idea of trying to find people ourselves, and went directly to an agency.  Risky, of course, since sometimes they're people who have no experience with children and are used to taking care of elderly people in nursing or managed-care facilities, but much easier with the agency because we don't have to think too much about the whole process - they take care of everything.  We've gone through several caregivers with the agency, as people leave for a variety of reasons, but we screen each one first by staying home while they're there for about 2 weeks, making sure we and Samantha like them.  We've been fortunate to have a few really, really good ones, the kind you want to stay forever.  We've had a few so-so ones, too, ones that weren't outright bad, but let's just way we didn't shed any tears over their leaving.  I think in some situations, the caregivers can do other domestic things, provided they're centered around Samantha's care, but we don't ask anything more of them than to focus on Sammi, occasionally preparing her dinner (which is usually just something microwaved...LOL - she eats separately from us because I get home from work so late).
 
Q.  Samantha's hair is gorgeous! Just good genes or do you use some wonder shampoo?

A.  Quick answer for this one!  It's just good genes!  She was born with a head full of hair (red, actually!  I was so excited to have a red-haired, blue-eyed baby!), and never lost any of it.  The blonde all filled in around the red, and eventually, after several years, the red became sun-bleached and began growing out as blonde with the rest.  However, if she's anything like mommy and daddy, it'll turn mousy by the time she hits puberty.  :-(

Q.  It seems like a lot of families who have kids with Ds adopt another kid with the same diagnosis (at least in the blogosphere). What are your thoughts on this? Is this something you've considered yourself?

A.  I'd be lying if I said that topic never came up in our household.  It did, but with such limited long-term care plans for Samantha with our incredibly small families and our own crappy limited incomes, the concern about trying to create long-term care plans for not one, but two children with disabilities would make it nearly impossible.   

Day 18: Infantile Spasms Guest Blogger #2

I don't really think we can get enough of this topic.  Infantile spasms.  As rare as it is, it seems to affect so many within the Down syndrome population.  Knowing how to identify IS and knowing what resources are available, are critical with this condition.  I'm so happy to present today's guest blogger, Tiffany, of Discovering Joy, whose daughter, Danielle, is beautifully enhanced by Down syndrome and cruelly plagued by infantile spasms.  Here's her story:

Looking back at this period of time that was so difficult for us has my mind reeling. A downward spiral in to a dark place I hope never to return to. A place where there was so much sadness and stress and worry; a debilitating worry that was almost more than I could bear; constant, crushing, worry. When Danielle was born with Down syndrome I made a conscious decision not to spend my time worrying about the future. Our present-time was wonderful. We had a brand new baby girl. So soft and new, the sweet fragrance of a newborn was enough to slip me in to a blissful repose. That blissful moment in time was ripped away from us as infantile spasms shocked me into an immediate state of vigilance. Not all was well. Our present wasn’t ok anymore. I watched as my daughter suffered through uncontrollable seizures. They would come again and again. I held her tight as I swayed with her and told her repeatedly that everything would be ok. There was nothing else I could do. I couldn’t stop them from coming. The feeling of helplessness was torture. The seizures were relentless, happening every time she woke, and often after feeding. Every ten minutes during her naps I went to her room. I went to her room fearing that she was seizing. I knew the seizures were causing her discomfort and anxiety. I didn’t want her to suffer them alone. She slept with me at night. I would wake to her tiny body jerking involuntarily. I couldn’t stop it, but I did my best to comfort her. The seizures continued through different drug treatments. Each time we tried a new drug or increased her dose I had a renewed sense of hope that the seizures would stop. Each time I crashed back down in to my dark place as the seizures prevailed. Time was our enemy. As the seizures continued Danielle’s condition worsened. She stopped smiling, there were no more coos. She started turning her head back and forth repeatedly, a behavior that continued throughout much of the day. She seemed so incredibly far away from us at this point. We were losing her. It was happening right in front of us. We were losing her and we were helpless. I have never in my life been so desperate.


Danielle’s diagnosis of infantile spasms came three days before her heart surgery. The procedure that had been haunting me for months suddenly became something that I was looking beyond. I was anxious to have her repaired so we could get a handle on the seizures. I understood what the surgery would consist of. I knew that the success rate was very high. I knew she’d be ok. I didn’t know, however, how infantile spasms would affect her, or how she would respond to treatment. The doctors didn’t have much optimism when they talked about outcome. I found myself praying for Danielle to have Down syndrome… JUST Down syndrome!

After failing Topamax, Prednisone, ACTH, and a high dose B6, we finally found Danielle’s miracle drug, Vigabatrin. She has been seizure free since May. As soon as the seizures stopped, she started coming back to us. She was smiling again. Her coos were like heavenly hymns. She was interested in her toys again and engaging with us. The dark clouds parted as our bright smiley girl emerged from the clutches of the monster that is infantile spasms.

I don’t compare Danielle to her typical peers anymore, like I found myself doing in her first few months. I know we’ve been given a gift in this child. She is a beautiful soul. She has been through the unimaginable and still finds it in her heart to be joyful. So joyful! Her spirit is radiating, it reaches in to my soul and awakens parts of me that I hadn’t even realized resided there.

While it is very emotional for me to re-visit this time that was so difficult for us, I have to talk about it. Maybe you’ve heard “infantile spasms” somewhere, or you’re aware that children with Down syndrome have a higher risk of developing seizure disorders, but you might not realize how subtle these clusters of spasms can appear to be, or how damaging they are. It is imperative that IS is treated right away. The first time Danielle had a seizure, as I held her in my arms, I wasn’t really sure what was happening, if anything. My mind raced back to a video I had once happened upon in an online forum of a child having an episode. It was like, immediately there was a flag that went up, an alarm that sounded. I honestly don’t know how long Danielle would have gone undiagnosed if I hadn’t had that video stored in my mind. These videos can be hard to watch, but I want to share them with you.

Here is a video of Danielle were you can see some subtle spasms. Spasms at 0:01, 0:12, and 0:28




Here she is during her first EEG, the spasms are much more noticeable here.



If you find yourself facing an infantile spasms diagnosis, you need to become your child’s advocate. You might find, like I did, that no one will fight harder for your child than you will. If your pediatrician is lagging on looking in to suspicious behavior, push them. I was ready to head to the emergency room insisting an EEG had my daughter’s pediatrician not been willing to have her admitted right away (which she did). If you are not confident in your neurologist, don’t be afraid to get another opinion! Don’t forget that your doctor works for you. If you can’t get an appointment from the front desk, stalk the doctors’ nurse for an opening. Seek out an epileptologist, or a neuro who has experience with infantile spasms.

Please, check out this inspiring woman. She’s the mother of a child who currently battles infantile spasms. She is getting ready to run the Marine Corps Marathon on October 28th, in effort to raise awareness of Infantile Spasms, and to raise money for much needed epilepsy research. Let’s cheer her on!

She knows too well, the guessing game that is moving through the list of AED’s hoping one will work. There are children who are suffering now that could benefit greatly from new research.

Here is her story.

Maddie's Marathon

Please visit her donation page, if you feel inclined to do so.

http://cure.convio.net/site/TR?pg=fund&fr_id=1060&pxfid=2670

Day 17: About Reading: Terry Brown Podcast - So Happy To Learn

I was so excited yesterday to see on someone else's blog that Terry Brown, guru and creator of So Happy To Learn, participated in a podcast on Yvonne Pierre's weblog the other day.  If you missed my previous posts on the subject of reading, Terry Brown was totally instrumental in Samantha learning to read.  She's an amazing woman, an amazing teacher, and an amazing advocate for people with Down syndrome, and I feel very fortunate to have learned so much from her. 

The podcast runs for about an hour, and is totally, totally worth listening to all the way through.  Terry not only discusses teaching reading to people with Down syndrome, but also writing and math.  The link can be found here:  http://www.blogtalkradio.com/ypierre/2012/10/13/reading-and-down-syndrome-with-terry-brown (where you'll find a few photos dropped into the audiocast) or just click on the link below.

Listen to internet radio with Yvonne Pierre on Blog Talk Radio

Day 16: Infantile Spasms

Today I'm honored to have my friend, Nicole, guest-posting about her son, Ethan, and their experience with Infantile Spasms.  This post was a year in coming, but totally worth the wait, especially if the information she provides here can help even one family through this devastating condition.  I'd like to add, here at the beginning, that one excellent resource for information and support for Infantile Spasms can be found at the following link:  http://www.infantilespasms.com/forum/

 

Thank you SO much, Nicole, for sharing your story and your beautiful little boy!



My name is Nicole, and five years ago we had a little boy who we named Ethan. He was born with an extra little love as we called it, also known as Trisomy 21, although that is not the reason for my post.  When he was 11 months old he was diagnosed with Infantile spasms, a form of epilepsy. I am not going to write all the facts, but give you our story because just in the 4 years Ethan was diagnosed things have changed from what I understand. I just want someone to know, if they happen to read this, that it is a hard road, but know that it is not all as ugly as the doctors may say and that there are other families out there who were or are in your shoes. There are great resources - the Epilepsy Foundation, for one, and a few Yahoo groups as well.

To those of you not familiar with this, please do us one favor and never, ever give up on a child diagnosed with IS. When you read about IS on the Internet it is not pretty, the outlook is ugly and grim. We would not give up and neither did Ethan.

We needed to start medications quickly to TRY and control these monsters. In Ethan's case, they were quick head nods that we first thought were just due to his low tone. He would have 3-10 at a time, which could last for a while. And all during this time, they were stunting the achievement of his milestones.

We immediately started medications, and if you are not familiar with seizure medications, let me tell you that what they can do to a child's body is unbelievable. Medication after medication, we would see the seizures worsen and Ethan be less and less  himself and very out of it. Finally, after 3 months of failed medications, we went to ACTH therapy which is a steroid injection we had to give him every day in the leg. This particular therapy made Ethan very bloated, and he would only sleep 4 hours a day. However, Ethan would still smile and laugh, which made this so much easier to get through. We thought at about week 3 we had seizure control - we hadn't seen any, then all of sudden they came back and with a vengeance.

 We immediately had to stop the ACTH and go to what doctors were calling our last hope,  the ketogenic diet. No joke, with this diet you have to measure everything to the gram. All fats.  I couldn't believe what I was putting in my kid. The amount of mayonnaise, oil and butter was just disgusting, but you have to do what you hope works. While on the diet, Ethan got lipid pneumonia due to the oil getting into his lungs. Seizure control was better, but not fully controlled. After about 4 months on the diet, Ethan was becoming very sick. Throwing up.  Blood work was so abnormal that after his third hospital admission we only had one choice but to take him off the diet, the one thing which seemed to be helping. I remember crying in the neurologist's arms, knowing this was our last hope, asking what is going to happen to him now?  There has to be a miracle drug for our little guy.

Our neurologist told us if we didn't get the infantile spasms under control by age 2 our outlook wasn't good. But we were not giving up! After stopping the diet Ethan was put on Depakote which seemed to help, but we never had full seizure control. We had some bad days and we added Banzel to the mix. For us, this seems to be the right mix. Ethan was just having tiny little head nods as he was falling asleep, which is common with kids with IS. We would take that.

His EEG was showing some activity but no seizures - just activity that happens before a seizure and no hypsaarthmia which is Infantile spasms.

We can say today we have not seen anything at all since March of 2012.

Ethan will be 5 in a few weeks. He just started walking, and yes, he may be well-behind his peers, but Ethan has taught us so much these last five years.

One of our favorite quotes is, "a journey of a thousand miles began with a single step." That's our Ethan!  He will get there and it will be in Ethan time and style. Nothing better than that to us.

Please enjoy this video - it is our buddy walk video for this year. 

Day 15: Q&A Part III: About Healthcare Professionals and Friends

Saturday afternoon, preparing to ride a pony at the DSANV pumpkin pick

Today is very exciting for me!  I just discovered, through a random commenter on another post, that my post, Advocate, is now up on Mamapedia for the next 3 days!  Hooray!!  And thank you to the folks at Mamapedia for giving me this opportunity.

I realized that I had a lot more questions from my Q&A than I'd originally thought, and, being a fairly long-winded person, I have long-winded answers.  Here are two more questions I've got answers for, with more to come in the upcoming days! 

Q:  As a student midwife, I always wonder how the attitudes and reactions of healthcare professionals impact parents of children with special needs, particularly in the early days.  Is there anything you would change about your postnatal experiences if you could?  Is there anything that could have been done better to support you?

A.  I hear way, way too often, horror stories of people's immediate post-natal experiences when having a baby with Down syndrome and no prenatal diagnosis.  I've heard of bleak outlooks being spewed by uninformed healthcare professionals, proclamations of "I'm so sorry," coupled with a here's your baby, have a nice life kind of attitude, devoid of any useful information or resources to help new parents on their way.  This always makes me so sad, makes me realize that there are still no many unenlightened, stuck-in-the-dark-ages doctors and nurses out there, who just need someone to show them the real truth.  Not that Down syndrome doesn't come with its challenges or health issues, because it certainly does, but to give a new and emotionally vulnerable parent so much negativity, without so much as a hearty Congratulations on your new baby! or a link to a local Down syndrome association as a reference is unconscionable. 

Our situation was what I recall to be a little unusual at the beginning.  When Samantha was born, I was actively looking for markers, asked, while still in the delivery room, how long before we'd know if she had Down syndrome.  I don't know why, but it was just a feeling, before I even saw her.  The doctor, not expecting to hear that, took a closer look at my baby, said "Hmmm..." and walked out of the room.  Steve cornered the L&D nurse outside a little bit later, asked her if she thought Sammi had Down syndrome.  Slightly nervous at delivering that kind of news, as it's not her position to do so, she nodded. 

I don't actually recall any doctor coming to formally tell us.  Once Steve let it be known that we knew, the ball began to roll, the visits from cardiologists, social workers and who-remembers-else began.  While I am, in retrospect, a little bit disappointed that nobody came to sit with me and tell me outright in a professional capacity, we still felt supported by the hospital and its staff.  They all gave us congratulations, the packet we received from the social worker was packed full of useful new parent information and resources, and the nursery staff all bickered over who would get to cuddle and rock my baby when she was away from us.  They, too, felt a need to protect her.

While my experience was good, many hospitals and healthcare professionals still have a lot to learn about this kind of thing.  I hope their eyes can be opened by other parents and advocates...

Q.  Does Sammi have any friends?  Does she have DS and non DS friends?  Always curious what other moms do... 

A.  Ooh, this is a tough one.  And one I kind of ignore, mentally, to myself, avoiding the honest truth of the matter.  And the honest truth of the matter is that Sammi does have two types of "friends."  She has the real friends, or, rather, the ones I know to be "real" friends, who do have Down syndrome.  We have playdates, she talks about them when they're not around, and she gets so excited to get to play with them.  I don't know if it is an instinctive connection, or if it's just because I seek those kinds of friendships out for her.  They're easier to maintain, easier to understand, and I don't have to worry about what the other child thinks about her, if they're wondering why she doesn't talk like they do, play like they do, etc.  And I, myself, feel a stronger connection to their parents.  The other type of friends she has are the ones at school, the typical friends.  But because I'm not at school with her, I really can't attest to the nature of those friendships.  Her aides and teachers all tell me that she sits with them at lunch, and that they're all very good with her, but I think it may be more of a protective, older/younger kind of relationship structure.  We don't get invited to their birthday parties, or for playdates, and, to be honest yet again, I don't know how well either would go anyway.  I am not sure if I'm protecting her, or protecting me.  I'm happy they look out for her.  I'm happy they're kind to her.  I'm happy they humor her.  But what else do I want?  I want fulfilling friendships, ones that she can relate to, ones that I can trust.  And that leaves me...where?  I'm not sure.  I think Samantha will have to pave the way with her peers at school, to determine for herself what the nature of those friendships will be. 

Day 14: Sammi's First Spelling Test

18 out of 33 - not bad!  Although I am protesting the point she got off on #6...her "Ws" are a little weird, but it's still a "W" so I'm not sure if there's some other reason - maybe the mark between the W and the E?  Hmmm...

But anyway, I'm not quibbling.  I'm soooo proud of her.  She did a great job!  And I've quizzed her on some of those words after-the-fact, and she's been fine with them.  I don't think she doesn't actually know them, she just gets a little fed up and doesn't want to do it anymore.  It's hard to test our kids!!

Lately Sammi's been writing sentences for me, completely umprompted, on her MagnaDoodle.  So cool!

Re-test is this week.  Not sure if we've adequately coached her on them, but we shall see...

Day 13: Weekend Photo Filler - Apple Picking

I've seen blog posts ad nauseum this past month of photos of children picking apples.  They're all lovely, but, I must admit, I'm not going to add anything earth-shattering here.  We drove out to Maryland two weeks ago to pick apples, and here's some photo filler for the weekend.  Enjoy!

 

 

 

 

Is it theft if you eat an apple in the orchard and don't report it?

 

 

 

 

 

 

 

 

 

 

 

 

Day 12: Q&A Part II: "When Did You Feel Like Everything Was Okay?"

Happy Friday, everyone!  I'm a little bit sad because I don't actually have anything to do planned for this weekend.  And, like I said in yesterday's Q&A, I feel guilty for those lazy weekend days when we don't do anything.  Especially if the weather's as beautiful as it's supposed to be tomorrow.  Ah well, there's always a pumpkin patch/petting zoo/library/mall/playground just waiting for us.  Maybe it's time to pull some playdates out of a hat...

So, back to answering questions, here's one of the triple-barrel variety:

Q.  When did you feel like everything was okay?  And when did you stop wondering what others thought?  And where is your favorite place to shop for Sammi's amazing clothes? 

A.  Good questions!  Feeling like everything was "okay" is pretty relative.  While still in the hospital, with the support of my husband saying everything would be okay and the information given to us by the social worker showing me a glimpse into a possible future for Samantha, I kind of felt like things would be okay.  Like we could do this after all.  But was I truly okay with it?  Not at all.  It wasn't an overnight transformation, although I was able to put on a brave face and show people, honestly, how in love with my baby I was, how happy I was to have her.  But I did mourn the child I didn't get, the future she certainly wouldn't have, and the struggles she would have to face.  How can I protect my child???  That was what really broke my heart. 

As Samantha grew and thrived, both before and after her open heart surgery at 4 months, her personality began to really shine through.  The brightness in her eyes and her smile, the magical way she captivated us and anyone who came into contact with her, her strength and determination, that's what really made me begin to realize that things would be really okay.  Already, the vision of that blank, slack-jawed, woman-child shuffling along behind me was gone!  Just like that.  Already, I began to see snippets of our future lives together, the things we would do, the things we would see, the things she could accomplish.  And then I knew it would be okay.  Certainly, it wouldn't be without bumps and struggles, but those were nothing compared to what I'd originally envisioned. 

It took a bit longer to stop wondering what others thought.  I never actually worried what they thought of Samantha - she usually had everyone eating out of the palm of her hand on first glance, and I never had reason to think people had negative thoughts about her or about Down syndrome.  No negative comments, no sideways glances, no signs of disdain.  But I had this weird, irrational thing in the first year where I worried that, because I seemed (was!) so happy with my daughter, because I didn't wear a my daughter has Down syndrome badge on my arm or across my forehead, that people would think, "oh, poor thing, she *doesn't know.*"  Irrational, like I said.  And so, during that first year I felt compelled to bring it up in conversation all the time, usually with complete strangers.  I'm sure part of that was born out of my need to talk about it myself.  I'm not exactly sure what spurred the turning point after that time, but just after she turned 1, I began blogging.  I'm sure it's no coincidence that that's when I stopped caring what others thought.

Okay, fun stuff - Sammi's clothes!!  Stay tuned for my new blog I'm going to put up, likely not until the new year when I can get everything together.  It'll have photos and information about Sammi's clothes, and where to buy cute kids' fashions without spending much money.  In the meantime, I'll tell you I get them from any number of sources.  I buy bits and pieces that can be easily layered or combined with others, almost always on sale.  We have a great children's thrift store selection nearby where I've been lucky to obtain some amazing finds!  But as far as retail stores go, I usually get things from Target, Naartje (check out their website - amazing prices and sales, gorgeous stuff!), and Children's Place, along with anyone else who happens to be having either an end-of-season or going-out-of-business sale.

Stay tuned for the next set of questions!  Thanks for indulging me...  :-)

Day 11: You Got Questions? I Got Answers! Part I

Rehashing an old photo, just because I love it.

Thank you to everyone who asked some incredibly well-thought-out questions the other day, both on the blog and my Facebook posts.  You've definitely got me thinking here...  Because these questions will likely require rather lengthy answers (I have absolutely no ability to make a long story short...), this will be broken into several posts over the next few weeks. 

Q:  How is living with a person with an intellectual disability different than how you would have thought it would be?  What are your greatest challenges as her parent?  What is easier than you would have thought?  What do you wish everyone who met her could see that you might not see in a first meeting?

A:  Wow, 4 in one!  Of course, like any one of us, nobody just envisions living with a person with an intellectual disability if they were not originally touched by disability in some way in the first place.  When Samantha was born, suddenly I was faced with it, watching my entire future life tragically flashing before my eyes.  I can't do it.  We can't afford it.  I'll never have a life of my own, a life of my dreams, the child of my dreams.  I'll forever have a blank, emotionless, slack-jawed woman-child shuffling along behind me.  I thought of the museums we'd never visit, the places we'd never go, the mother-daughter bond we'd never have.  I honestly don't think I really need to tell how life with a person with an intellectual disability is different than I'd thought.  I've seen my life transformed into one with more love, more joy, more excitement, more variety of activity and interest than I could possibly imagine, even than with a "typical" child, I think.  I've seen the lives of my friends who also have children with Down syndrome be transformed in much the same way.

My greatest challenges as Samantha's parent are in keeping her stimulated, educated, active, and in trying to make every moment memorable and special.  Not like these things aren't happening, but I think I make it harder on myself, thinking that teaching should be constant, disappointment in my abilities to make it so, thinking that happy memories need to be made at every moment, worried and guilty when a rainy Sunday becomes a lazy Sunday of no discernible direction.  Instinctively, I know that I can't make those things happen all the time - it's not healthy for either of us.  Also, I have a nasty little habit of wanting to do things for her that she's perfectly capable of doing herself, in the interest of time management.  Seriously, the kid is like molasses.  All in her time...  And that worries me.  I need her to learn self-sufficiency, life skills, independence. 

 I definitely think that educating Samantha has been easier than I had thought it would be.  The joy I felt in my hospital room after her birth when looking at the pamphlets the social worker brought me was brought on primarily by seeing the photos of children with Down syndrome in classrooms, at desks, holding pencils and learning.  My eyes zeroed in on the glossy, modern images, and I was filled with hope.  From that moment on, I was determined that we would give her everything we could to help her reach her full potential, to show others who may think as I had initially thought that they are wrong.  She proved to be a sponge, absorbing everything around her.  I started her with flashcards at about 18 months, and she amazed me with her insatiable appetite for learning, the pride that showed on her face reflecting our own.

There are so many things I wish others would see when they meet her.  I think because of her language difficulties and her ability to go off on a random tangent about nothing that makes any real sense, they can't see how smart, funny, sensitive or empathic she is.  It's amazing how a quick snapshot of anyone, ourselves included, can yield a very different view than the reality, and snap judgements can be made.  I didn't smile in that first surprise meeting when I was lost in thought?  Well gee, that must make me a mean or miserable person.  Samantha certainly melts the hearts of everyone she comes in contact with, but I want them to be able to see all of her.

More to come...

   

Day 10: Teen *Idle*

We're terrible role models for our daughter. 

With nearly zero ability to reference current pop culture and no older siblings to show her the way, I'm afraid Samantha may suffer from a complete lack of knowledge of the language of her peers.  She's still in the stage where she doesn't care what clothing I put on her in the morning.  The only songs she knows are Twinkle Twinkle and ABC.  The only things she watches on TV are Arthur, Backyardigans, Curious George...  Music?  Clueless.  I listen to the news on the radio mostly, sprinkled in with random 80s new wave classics.  Steve listens to classic punk rock and ska.  Timeless?  Absolutely.  But for our generations only.

Friday night I got to re-live a teen dream and see one of my post-punk pop, costume-clad, alternateen idols perform in concert in Philadelphia.  Adam Ant.  Ask anyone under the age of 37 if they've ever heard of him, and they likely will look at you blankly, waiting for explanation of this person with a strange name.  Seriously, I've tried it several times over the last few weeks!  And as I started to get more and more depressed, I stopped telling people who I was going to Philly to see.  Save that for my high school and college friends.  And while it was worth the 30-year wait to see him (omg, he was soooo good, if not a bit winded between songs...he's super old now...), sadly, that's a prime example of the limitations of my own frame of reference for music. 

And that will not help Samantha to fit in with her peers in the least. 

To (ahem) toot my own horn, however, I have spent a lot of time lately listening to pop stations on the radio, just enough time to familiarize myself and to make my ears bleed.  And I can actually tell the difference between Justin Timberlake and Rihanna (both of whom I feel both horrified and elated to say I actually like).  I'm trying, I really am!  But I don't expose her to it nearly enough (even with a cutesy Hello Kitty radio tuned in to said pop station perched on a shelf in her room, within reach), and Samantha really couldn't care less anyway (the radio is largely left untouched, and the reception in her room sucks).  We are also big addicts fans of television, including a healthy dose of reality talent-show-type TV (American Idol, The Voice, So You Think You Can Dance, etc.).  And, again, Samantha really couldn't care less, not to mention, Mommy & Daddy TV comes on after she's in bed.  Sometimes she asks if she can stay up late, and I am quick to threaten her with the ultimatum, if you want to stay up late, you have to watch Mommy's and Daddy's shows...  Works every time, and she's off to dreamland in her bed in minutes.

How do I make her care?  How do I help pave the way for her to become accepted by her peers, to enjoy the kinds of things other kids in the mainstream of life like? 

Wait...she's only 6...  But that being said, I know of plenty of 6 year olds who enjoy listening to and singing pop music, demand to wear particular clothes, watch shows like American Idol on TV, have mad childhood crushes on handsome (or, in the case of my 6-year-old-self, not necessarily handsome, just older) boys/men.  cough cough...Justin Bieber, anyone? 

Okay, so maybe I'm not so hard-pressed to push the issue after all.  Alterna-mom and Alterna-dad may still be turning out Alterna-kid eventually, just because it's the natural order of things.  But for my wee little one to announce that she's into an old geezer's music, like Adam Ant, over a modern girl's assimilation into present-day, social acceptablity, might be too isolating for a girl like her.  I don't know.  We'll have to see when we get there.  And in the meantime, I'd be happy to have her even express interest in the old geezer stuff!  Something! please! anything!!!

I bought my first Donna Summer album at age 8.  Followed shortly thereafter by Shawn Cassidy and Donny & Marie.  I'm reasonably certain my exposure to pop culture began with my schoolmates and TV.  But how are the younger kids being exposed these days (unless their mothers are secretly dancing around to the Biebster...)?  How do I teach her these things of which I know nothing?

Here are some videos for those of you over the age of 37 who did not spend the 80s listening to Bryan Adams, Phil Collins or Lisa Lisa and the Cult Jam...  Enjoy!

Day 9: Making ASSumptions

I have learned, over the last 6-and-a-third years, to kick myself when I underestimate my child.  I am continuously learning to never to make assumptions.  It's something so many of us parents of children with Down syndrome learn pretty early on as we advocate for our loved ones and learn how to teach to them in ways we never knew existed.  As the old adage goes, "never assume because it makes an Ass out of U and Me."  So true. 

We've been lucky never to have people pre-judge Samantha, at least not to our knowledge anyway.  Maybe they do, but they have enough sense to keep their mouths shut, and, hopefully, to feel really guilty for it when they discover that they were oh, SO wrong.  How can you make a judgemental statement in front of a parent that looks completely, hoplessly oblivious about their child's diagnosis?  Oh, we are not oblivious, of that you can be sure, but, as I've said many, many times before, our lives do not revolve around Down syndrome.  Let some poor fool open their mouth to state what they may feel is obvious, and pull us from our reverie that blossoms out of the truly ordinary lives we lead, and you'll find two wide-eyed, slack-jawed adults caught completely off-guard who may, given the right location, set you painfully straight. 

Down syndrome awareness includes the abolition of incorrect and dated stereotypes and a focus on the abilities of people with Ds.  20 years ago, only a small handful of the population would have been able to tell you that people with Down syndrome could walk, talk, learn, read, have feelings, have friends, live independently, love...  I find the 21st century to be more enlightened, although the assumptions of inability are still there.  Hell, I make them myself!  Any parent, whether one of a child with Down syndrome or not, is capable of making assumptions about their child, assuming they can't do something that seems to be above their learning level, assuming they will lead a particular life/lifestyle as they grow up, assuming any number of things. 

Personally, I tend to underestimate Samantha in so many ways, on so many occasions.  And yes, if that makes me an ass, then that's what I am, and it's a flaw I am working hard to correct.  She has shown me time and time again that I am, although she is not yet able to give voice to that particular term (and I will not assume she won't at some given time in the future...).  Did I ever think she would have such a brilliant sense of humor?  No way.  And is she really, purposefully funny?  Heck yeah!  Did I ever think she would be able to learn, academically, as she does?  No way.  But it fills me with indescribable and overwhelming pride to see her keeping up with so many of her classmates in so many aspects of her school day.  Have I seen some of her peers, perhaps those without spoken language abilities still have incredible receptive language?  Just because someone can't speak does not mean they don't understand or aren't trying to communicate - the incorrect assumptions here run rampant, sadly, and the aftereffects tragic.

Rather than making assumptions about what someone can't do, perhaps opening ourselves up to have our minds blown by the abilities of people with disabilities is the more appropriate way to go about our lives.  And, if I'm being honest, the act of having our minds blown by someone's abilities means that we may have had a preconceived assumption beforehand already.  Perhaps the better way to go would be to see these incredible abilities and know that they're the norm.  To not be surprised or blown away by them, to see them as the everyday, run-of-the-mill things that people do.

Now that would be a new day for our kids, and a lot fewer asses on the planet. 

(btw, I'm still taking questions for next week's Q&A...please visit yesterday's post to leave them for me!)