Thursday, October 31, 2013

Freaking Out, Just a Little

I'm a little nervous today.  Like, little pools of anxiety are swirling around in the pit of my stomach, unsettled, pleading for mercy from the control-freak side of my nature. 

Samantha has gone on a field trip.


Steve and I have gone to work, no extra vacation time to spare.


Worry that she's on a looooong bus ride, with someone other than myself or Steve driving, through rush hour traffic, towards the City, then outwards to Mt. Vernon.

I mean, I love that she's going to Mt. Vernon - it's a very cool history lesson that may bring about some clarity for her concept-deficiency.  What I mean by that is that while my kid is smart, learns concrete lessons that can be made tangible, directly in front of her, concepts are very challenging. 

Think about an example, you can say that George Washington, former resident of Mt. Vernon, was the first President of the United States.  But how do you explain what a president is?  What the United States is?  Former resident?  He may well have just moved out of that house last week.  She can memorize factsGeorge Washington was the first President of the United States.  We live in the United States.  But it doesn't make any of that make any more sense.  I'm hoping that the trip to Mt. Vernon will at least provide some more tangible, concrete understanding of what life was like a long time ago, but the concept of time is difficult for her, too.  Show her a carriage house and tell her that horse and carriage were how people traveled a long time ago, and she will likely understand only that it's a means of transportation that could well have been employed just yesterday

Back to my worry, though, I don't love that she's going so far away without us. 

I'm not worried about her behavior - I suspect she'll be just fine.

I'm worried about the drive.  I know how Washington commuters are...  I know that school busses don't have seat belts...

I wish she had a cell phone so she could call me when she got there to let me know the trip was fine.

It's hard enough getting a sitter for your baby for the first time.  It's hard enough sending your kid off to school for the first time.  It's hard watching your child grow and become independent in so many ways, when just yesterday they were only a tiny, helpless baby, needing you for every aspect of their care - bittersweet.

Sometimes you just have to let go and trust...

I acknowledge that I'm a control freak.  Isn't admission of a problem the first step in the program?

Tuesday, October 29, 2013

The Aaaays to the Queues, Part I

Thank you all for indulging me with so many fabulous questions last week in response to my plea to populate a series of Q&A posts!  I was worried I'd be the laughing stock of the blogosphere if I hadn't received any, but I always had an out if I wanted to say I'd received all of my questions via private Facebook message.  Who'd be any the wiser, right?  But I didn't have to resort to such a clever yet brutally pathetic deception.

Because I often tend to get long-winded when talking about myself, I'll say that this is just Part I, to keep your eyes from glazing over, and that there will be at least one more Part in the series of A's to your Q's. 

Q)  What do you want teachers to know when your child is in their class? How can teachers help your child in inclusion? What is the most frustrating things about school? What do teachers not do that you wish they did?
A) Oh, these are excellent questions! I may have to skip the 4th question because her teachers read my blog, but to be honest, I can't think of anything at this point that they did not do that I wished they did. This is actually a pretty hard series of questions in general - we've been really fortunate that we've not yet seen the *other* side of education, the one where we need to fight for inclusion or one where the teachers weren't invested in my child's education. We've always had an aide in the class that helps Samantha stay focused and helps to modify some of the instructions. We don't want the GenEd teachers to have to modify what they do for a class of 21 to suit just one child - it's not fair to them. We want to make sure that the supports are in place within the classroom environment to help Samantha keep up, etc. 
We had an IEP meeting yesterday to add in some accomodations and modifications, things they already had in place, but that we wanted in writing just in case.  They included having Samantha stay in class for the introductory portion of the more conceptual lessons (Civics, History), then leave as part of a small group to have the lesson broken down into more basic, comprehendable pieces by the Resource Teacher.  I really don't give a rat's ass if Samantha learns what the longest river in Europe is, but I do want her to know how to look at a map or globe and to understand where we live in relation to other places.  She can memorize stuff, but I'd rather she understand more basic concepts that will help her in the future.  This is what they've been doing, and this is what's been working.  I don't mind these short, periodic pull-outs, as long as she's learning.  We were validated a few weeks ago when we were told by Sammi's GenEd teacher, the Resource Teacher, the Assistant Principal and two people from the county that had observed Sammi in the classroom setting, that she is definitely in the right placement, that she belongs in the GenEd second grade setting.  I know that can often be the biggest fear for parents - that someone will come and tell them that things just aren't working out, that they need to re-evaluate their child's placement in school.  I certainly feel for those parents.  We hold our own breaths often enough.
The most frustrating thing about school?  I just wish that we could observe Sammi in her classroom environment more.  Last year we dropped off and picked up Samantha from her classroom.  This year we have to say goodbye at the front door of the school in the morning, and wait for her to be brought out with her class in the afternoon.  I totally understand security measures that need to be in place, and the fact that there's far less chaos when the parents aren't buzzing around in the mix of things, but we really relied on that extra few moments of communication and connection with her teacher and her aide last year, and now we get so much less feedback on a daily basis.  Sure, we get a behavior chart with notes on it each day, but there's really nothing like 1:1 interactions.  It felt good to have the Parent Teacher meeting yesterday to quell the insecurities we often feel about the teacher we just don't know much, if anything, about, in a classroom we've only ever seen, perhaps, once.  Once again we were able to feel that comfort that had been missing, much like the daily visits we'd lost.

Q.  What is your favorite brand of leggings? Brand of clothes that fits her best? Love your taste in clothes and the fit has been a struggle lately...

A.  Definitely Naartjie!  Their pants and leggings all have stretchy waistbands, and they go up to a size 12.  They pay great attention to detail, and leggings are so much more interesting that regular leggings you'd find anywhere else.  I also find great striped leggings at Old Navy, usually on sale.  For clothes that fit her best, in general, also Naartjie.  They do styles that are less clingy and more flattering than other brands,   Check out their website - they're almost always having a big sale, and every Tuesday they select 3 or 4 items out of their newest collection to run at 40% off for the day.

Q.  Did Sammi's diagnosis factor into your choice to only have one child?

A.  Nope.  We had always talked about having only one child from the get-go.  Plus, I was 37, and knew that even if we did want another child, I couldn't even fathom having another any time in the next several years, at which time I would be too old.

Q.  What programs/apps/etc. did you use to help Sammi to start to read? And keep reading?

A.  Before Sammi was even 2, we were using alphabet and number flash cards with Sesame Street characters on them and baby sign language cards with photos on one side and the words on the other.  She was totally obsessed with those cards, and we never left home without them.  At 24 months she knew her alphabet, and she shocked me before she was 3 by looking at the back sides of the baby sign cards, where only the word resided, and telling me what each card was.  To this day I'm still not sure whether it was just pure memorization of the color of the card, or if she was actually able to read them through long-term memory recognition/recall.  At 4, we were invited to join a test pilot of Terry Brown's online version of her highly successful So Happy To Learn program, in which she has taught people with Down syndrome to read, at her home, for many years.  It could not have gone better, and Samantha, empowered, took off from there. 

Q.  Couples who have a child with special needs have a statistically higher incident of divorce. How has Ds changed/improved your marriage? Has it had a negative effect in your marriage at any point and, if so, how did you get through it?

A.  The key word here is special needs.  The statistics of divorce among parents of children with Down syndrome are actually lower than in the general standard statistics of divorce.  I suspect this may have something to do with how manageable Down syndrome is, how much information and support there is out there that helps parents to work together to successfully raise their children with Down syndrome.  We have been so happy to have been able to agree on everything when it comes to raising her, educating her, providing for her and advocating for her.  Our marriage has definitely been stronger as a result, and Down syndrome, or the fact that Samantha has Down syndrome, has never played a negative role.

More soon!  Feedback and commentary are always appreciated.  :-)


Monday, October 28, 2013

The Mommy Parade

My town (called so very loosely, as it's more of a collection of planned housing developments spread over a large swath of former farmland), at the time we were looking to buy a house there, was affectionately referred to in some online reviews as "Stepford."  If you've ever seen the movie, The Stepford Wives, you may know what I'm talking about (except for the robots part...).  Every house is the same, the yards well-kept (by the home owners under the ever-watchful eye of the HOAs), common areas maintained beautifully, safe enough to (almost) keep your doors unlocked, well-dressed, well-behaved children in nearly every household and the greatest transgression by teenagers being the covert drinking of beer in a friend's basement or sneaking the occasional pot brownie.  The number of stay-at-home moms is staggering. 

One of my little fears when we moved in would be that the moms at school drop-off in the morning would be partaking daily in what I called (in my head) The Mommy Parade, a vision bred from TV, no doubt, or from accounts in books and magazines I'd read over the years.  A vision in which the local mothers, in their need to compete with each other, would participate in a ritual of having hair and makeup done, being dressed to the nines, just to drop their kids off at the door and present them with an air kiss goodbye.  That these same local moms would look upon those not in their clique of local-moms-who-walk-their-kids-to-school with disdain, pausing in their conversations about little Joey's Cub Scout award, peering over their designer sunglasses to appraise any new-comers who dared to tread on their territory. 

I wonder if this is a vision that all moms have when their child starts school or when they move to a new place?

But I am so happy to say that I was completely wrong. 

Not only were the local-moms-who-walk-their-kids-to-school incredibly warm and welcoming, inclusive and supportive, but they had as little interest in getting dressed in much beyond the sweats they'd slept in as I did, as little inclination to even brush their hair as to brush their teeth.  And, with a 7:30am drop off, I was so, so grateful of this complete shift in my perspective about this new town to which we'd moved.

One neighbor, with whom we walk most mornings, even gives my child a surrogate's kiss on the forehead as Sammi lines up behind the woman's own children to say goodbye.  A group of us occasionally gather on the corner on our way back home to chat about the weather, the school, our houses or our jobs.  And in a townhome community, having this kinship with the people we live so tightly side-by-side to is invaluable. 

The Mommy Parade, at least in my neighborhood, is a myth.  How is it in yours?

Thursday, October 17, 2013

And Now for a Change of Pace - Q&A!! Bring it On!!

I'm feeling a bit brave this week, and not just because I went with a couple of girlfriends to a real haunted house (decked out in disguise as a fake haunted house for Halloween) last Friday night where we held hands and shrieked like little girls as we made our way through a labyrinth filled with pitch-black darkness, scary children with bloody hatchets and undead ghouls jumping out from dark recesses. 

Well, actually that does make me feel brave, but that's not what's spurring this post.

I'm feeling a bit brave today because I am ready to bite the bullet in the name of blog fodder and beg ask for your questions so I can answer them.  Certainly it sounds pretty egotistical to come out and say, "hey, I think there's stuff you *want* to know about me, so ask away!'  And there's nothing that deflates an ego quicker than the sound of silence, a complete absence of incoming inquiries, thus proving the fact that there's really nothing interesting enough for me to tell, so c'mon, help a girl out here...I'm pretty sure you can come up with something, right?

I feel the need to come up with at least a few posts this month, if not for all 31 days, then at least a good portion of them.  And when in doubt, create a Q&A post, take a deep breath, hold it, and hope for the best!  Bring it on!

For a little viewing pleasure, and a trip down memory lane, here is Samantha at 21 or 22 months old, starting to walk full-time.

Tuesday, October 15, 2013

Disability and Abuse - the Latest Findings, and How You Can Protect Your Loved Ones

Last week I re-posted Down Syndrome and the Alarming Statistics of Abuse.  The statistics I quoted were from an unknown source and were most likely flawed, but the point was more about what you can do about it - how you can help to protect your loved ones, and help them to learn to protect themselves.  In my post on Facebook, I received a link to something far more valuable: 

An up-to-date survey on the abuse of people with disabilities.

When I say "up-to-date," I don't mean something only slightly more recent than, say, 1968, as we so often find in the outdated tomes and journals we generally have access to, or which get passed around like the telephone game, becoming even far less accurate through the re-telling than the original source material itself.

When I say "up-to-date," I refer to a survey of 7,289 people (including people with disabilities and care-givers) that was conducted between May and October of 2012 by Nora Baladerian, Ph.D., and released just last month, on September 5th, 2013. 

Some of those that clicked on the link to the survey commented on that FB post that they were unable to read it, that the data hit home and upset them that the risks are so great for our children and loved ones with intellectual or developmental disabilities.  No doubt they refer, in part, to the revelations that:

     *over 70% of people with disabilities (including 62.5% of people with intellectual or developmental disabilities) reported they'd been victims of abuse
     *41.6% of people with disabilities (including 34.2% of people with intellectual or developmental disabilities) reported they'd been victims of sexual abuse

Throughout the 45 pages of the survey there is data giving the bleak truth of abuse for people with disabilities, including *prevalence of abuse, *types of abuse, *frequency of abuse, *disability types of victims, *reporting of abuse, *reasons for not reporting, *outcomes of reporting, *prevalence of bullying (64.3% of people with intellectual/developmental disabilities reported having been bullied), *getting therapy, *victim/witness programs, and *how and why.  It's mind-boggling, and almost enough to send even the most stalwart advocate cowering into a corner, afraid of just what might come next.

Well, my reaction to the survey was far different than theirs.

Throughout the 45 pages of the survey there are enlightening facts and figures that make me feel POWERFUL in the fight against abuse. 

There is so, SO much more than those bleak numbers, those facts of what has already occurred.  I choose to see what can be done in the future.  There is information in the report on *how to reduce the risk of abuse, *how to improve reporting of abuse, *information on how to improve the prosecution of abuse, *comments by experts in the field of disability, *comments by survey respondents (including why they believe there's such a lack of reporting), and a *guide for parents on responding to suspected abuse.

It is highly recommended within the survey that we, as parents or care-givers, read and implement Dr. Baladerian's new book on risk reduction, A Risk Reduction Workbook for Parents and Service Providers, available through the website, DisabilityAndAbuse.  Also available through that website is a book called The Rules of Sex, recommended for people with intellectual disabilities and their parents.  I'll be checking them out, for sure.

This is important stuff, folks.  Read the uncomfortable details, get past the fear and the pain of learning what's been done to others, and empower yourselves and your loved ones with disabilities to reduce the incidence of victimization and abuse.  The 45 pages are all worth the read.  Pass this along, share it, get the information out there.  It's the only way to see these numbers go down.

Remember:  Abuse is more likely to happen when three factors are present: 

                                           POWER (of one person over another)
                                           VULNERABILITY and
                                                                     ~from Jim Stream's introductory note, p.iii

Print out this report and arm yourself with knowledge, protect your loved ones.  We can't afford not to.

Monday, October 14, 2013

Maybe My Kid Really *Does* Know How to Have Fun...

Sometimes I can't help but wonder whether or not Samantha even knows how to have fun.  After 7 years, I still can't isolate some of her triggers, and can't help but wonder if they're as random and changeable as the mid-Atlantic weather, or US government policy.  Being an only child, she's usually most comfortable reading, playing games on her tablet, or watching her shows on DVR.  She loves the playground and bouncy houses, but resists group activity, including sports.  I'm not sure if it's because she gets overwhelmed, or if she just doesn't know how to relax and enjoy herself.  She definitely is prone to bouts of anxiety, and I think somehow some activities tend to bring it out in her.

The Buddy Walk has so far been an exception.  A big day, full of big activities, throngs of people, an organized walk of thousands, loud music, you name it, the Buddy Walk is a great big ball of sensory overload.  This is kind of why I am not so sure about her triggers.  Knowing that Buddy Walk day is about her, she is always able to relax, take it all in, and have fun.  No whining anywhere to be found.  It's pretty astounding, really.  And this year's, held two weeks ago, was probably the best one of all.  My little hostess with the mostest hammed it up, played, socialized, and posed like a pro. 

Pics look familiar on the sign?  Perhaps a little *outdated?*  My printer was out of ink and I couldn't print out new photos the night before the event, so I just left everything from last year and changed the date.  :-)

With her 1st grade teacher of last year and her former AP.

With Charlie.  Love that kid. 

With Cinderella, new mom of an 8-week old.  LOL

With a sleeker, slimmer Batman than last year. 

With Daddy

She gravitated towards the music like a moth to a flame, keeping just enough distance between her and the speakers to stay comfortable.  The kid seriously can't dance (sorry, baby, to your future self who may be reading this...), and for anyone who may or may not have witnessed her mother trying to teach her to crump, my humble apologies for what you may or may not have seen, and for any injuries you may or may not have sustained, either physically from trying to poke your eyes out, or emotionally (Note:  I am *not* willing to pay your therapy bills).  Just goes to prove the apple doesn't fall far from the tree, except at least she's cuter.

Bubbles = pure joy.  Like she could have possibly experienced any more pure joy that day.  Seriously. 

And, for the cherry on top, a milestone achieved that surprised us all, including herself, I think.  I've tried to get her to get her face painted so many times in the past, and each time, she balked, refusing to even entertain the idea.  On our way back to our camp from the petting zoo, we passed the face-painting tent.  On a whim, fully expecting her usual resistance, I asked if she'd like to get hers done.  I took advantage of her silence and the brief flicker of interest, and quickly steered her towards an empty chair, making a fast selection of the same flower on the face of the girl doing the painting, willing everyone around us to stay silent, lest they ruin the moment and send her skittering away with nothing.

Once the artist began, Samantha was fully-engaged, while I still held my breath.

And this look said it all.

Thursday, October 10, 2013

Down Syndrome and the Alarming Statistics of Abuse

I'd originally posted this back in November of 2011.  I've never forgotten the terrifying statistics quoted below, but had forgotten that I even had this post until yesterday, when the topic of inappropriate hugging with our kids came up on Confessions of the Chromosomally Enhanced.  As a follow-up, let me just say that in the past 2 years Samantha has come a long way with the hugging issue.  I documented a major breakthrough in this post from a little over a year ago.  In the meantime, I have now realized that there are so many more parents of young ones with Down syndrome out there who read this blog since I last posted this, that it's information that really, really needs to be out there.  Please share this and help to reduce these horrifying numbers by arming ourselves and our children with knowledge needed to stay safe from predators. 


November 28, 2011

Tammy, at Praying for Parker, posted some very startling and unsettling statistics on her blog last week.  I've heard similar stats before, but have probably been in denial ever since. 

But denial won't make the problem disappear.

((deep breath))  Okay, here goes:  estimates show that  90% of females and 50% of males with intellectual disabilities will be sexually abused


Now, if I can get my heart to stop pounding and my brain to stop spinning long enough to continue, I'll give you some excellent ways to build awareness and help prevent this awful, awful thing from happening to your child. 

Tammy found the following list posted in a group she's a part of.  I don't know who the author is, but I send them a heartfelt thank you for posting this.  It's difficult to read, but so, so necessary.  Please take the time to educate your spouses and your children about this, and don't let your child become a statistic.

1. Start early. Introduce correct terms for body parts. This way a they can report clearly if someone engages in sexual misbehavior.

2. Introduce body privacy. NO ONE is allowed to tickle or play around with the private parts of your body. To counter any attempts at or*l s*x include the mouth as a private body part. NO ONE is allowed to put anything part of their body into your mouth.

3. Make it clear that if someone breaks the rules about body privacy, YOU (the parent) need to know about it.

4. Teach your child to stand back and hold out their arms and say – in a BIG LOUD – voice and say, “NO! STOP THAT!” “IT’S NOT ALLOWED!” Practice saying NO! assertively.

5. Practice distinguishing secrets to keep and secrets that must be told. Children and adults with intellectual disabilities often think they can tell good secrets but have to keep bad secrets cause telling a bad secret might make someone feel bad.

6. As sex abuse is about power, work to empower your child with independence in dressing and toileting.

7. Develop and practice problem solving skills. Role play different situations and how your child should react in them.

8. Bear in mind that if your child lacks physical affection, approval and attention, they become more vulnerable to predators.

9. Develop social skills. Personal space. Eye to eye contact. Make sure your child knows their phone number and address.

10. Often children with special have already developed a passivity to adults, especially to caregivers and other professionals. Teach your child it is okay to stand up for themselves.

11. With non-verbal children consult a speech therapist for communication symbols for sexuality.

Samantha is a very affectionate child, which is a really wonderful thing.  BUT...while she has gotten better about it, she does still like to hug random people.  It's so hard, as a parent, to know how to teach your child to distinguish between the people it's okay to hug, and the ones it isn't okay to hug.  Or to tell I love you.  We really have to work more on teaching her boundaries.  And, piggybacking on yesterday's post, teaching her Stranger Danger and how to fear and stand up for herself in certain situations.

Please re-post this, and share it with your special needs community.  Armed with this information we can help to reduce the number of incidents, and protect our kids.

Wednesday, October 9, 2013

A New Lease

I received a reality check the other day.  Hot on the heels of feeling sorry for myself, complaining that I wasn't sure that anyone was still reading my blog anymore, in the middle of my whiny rant (which I then felt kind of guilty about so I quickly changed the subject to talk about something else completely unrelated), I learned that my blog does have value, that whatever I decide to write about, however mundane, self-indulgent, educational or, even, wordless, there are people listening, reading, getting something out of it. 

I'm sure somewhere I've known this all along, but there are times when we all doubt ourselves and our abilities.  Times when we feel like we need to re-evaluate, perhaps make changes, perhaps stay the course.  Times when we acknowledge that we are human, and have flaws.  Times when we just don't know what to say but open our mouths to talk anyway, if only just to hear our own voices.  Times when we don't have to say anything at all.

All of those times are okay.  We all know them, all go through them.  And the blogosphere is not immune.  Sure, our fingers do the talking, often digging deeper into our hearts and minds than our everyday, conscious, IRL selves would do, and sometimes that's what makes us more vulnerable to those doubts and re-evaluations

But the reality check I received was in the form of the comments left on that post, and one in particular. 

The one from a woman who has a prenatal diagnosis of Down syndrome for her unborn child.

I know she's reading this, and I must apologize for singling her out, but she really made a big impact on me and gave me the kick-in-the-pants I needed to just keep on doing what I'm doing.  I now know that what I write, the stories I tell, even the ones that I don't think (or realize) are very interesting or thought-provoking, can make an impact on someone.  While I did not have a prenatal diagnosis with Samantha, I remember how important it was to me to have found the blogs about other children with Down syndrome after she was born.  It was that little peek into their lives that assured me that things would be okay, that I was not alone, that I could do this.  That our lives would be amazing, and full

I've got a new lease on blogging, and promise to carry on as before.  I enjoy it.  And I feel good knowing that others enjoy it, too.

Thanks for listening.  :-) 


Tuesday, October 8, 2013

Testing, Testing...

One of my big fears for Samantha entering 2nd grade has been the frequency and difficulty of tests.  In the 2nd or 3rd week of school we were informed that there would be not only a spelling test at the end of the week, but a history test as well!  History, science, math...all too conceptual for Samantha.  I am sure she can memorize nearly anything, but she won't have any idea what they're talking about.  President of the United States?  Means nothing.  The whole concept even of the United States is foreign to her.  Maybe more is sinking in than I think, but I can't even imagine how little any of that means to her. 

Children with Down syndrome often need their testing modified in some way, whether in the content or just the delivery.  I haven't quite figured out what kind of needs Sammi has as far as testing goes, except that after her first history test, when the students were given 5 or 6 questions, each with 2 multiple choice answers, it was apparent that she couldn't be given the test in that form.  She could read the questions and read the answers, but her careless reasoning saw her circling the answer on the right each time.  Totally random.  She managed to get 2 right, but not because she selected that answer for it's correctness. 

I mentioned something to her aide, and the next time she had a test that was similar there was a note written at the top that said "adapted," and she got 6 out of the 8 correct.  I am almost positive that "adapted," in that case, meant that the questions were read to her and she was allowed to think about what the correct answer was before circling it. 

It's interesting, learning how her brain works.

Spelling is another story altogether.  Seriously, this kid can spell!  The last few spelling tests she's done amazingly well, but the words are certainly not 2nd grade words - they're far too easy.  But the added task of sorting the words by their endings has added a little extra spice.  I've been quizzing Sammi like mad, not only on the simple words on her spelling list, but pretty much on any word that pops into my head.  And she loves spelling!  As an extra treat, she likes to turn it around and play teacher, asking us to spell the words she dishes out herself.

Last night, as we sat watching TV before her bedtime, I started asking her to spell different body parts.  She got pretty much all of them.  Then I said, jokingly, to Steve, "I won't *even* ask her to spell knee..." thinking it would be entirely too hard for her.  But then I stopped that silly thought and decided to just come right out with it. 

Me:  "Sammi, spell *knee.*"

Sammi:  "K..."  (omg...Steve and I just looked at each other, our jaws beginning their descent to the floor)  "N...E...E!"

Let's just say the whooping and hollering could probably have been heard out on the street.

So, I leave you with this thought:

Never, and I mean NEVER, underestimate your child's abilities.  Challenge them, but be careful not to discourage them.  Provide positive reinforcement no matter what the results.  Back off if they begin to show signs of distress, disinterest or frustration. 

And, extra-important and so, so difficult to remember, TEACH, don't TEST

If you plan on quizzing your child, make sure they know that's what you're doing.  That you've told them you're going to quiz them, and that they're open to it and prepared for it.  This is so hard for us, as parents, to do - it's natural for us to want to quiz them on their knowledge.  But teaching, and keeping the lessons fun, is the most important ingredient in providing a comfortable, happy learning environment.

So...on another note and back to the conceptual stuff that makes the hair stand up on the back of my neck...Sammi has another test on scientific hopotheses.  Something about coming up with a hypothesis, testing it, and coming up with a conclusion.

Can you hear me laughing?  I bet you can... 

Thursday, October 3, 2013

Spreading Awareness, Being Boring, Taking Pictures

October, Down Syndrome Awareness Month, has snuck up on me once again.  In the past I've said, "I don't think I can blog 31 for 21," yet then turned around and managed to pull it off anyway.  But this year I'm saying it and meaning it.  I will continue to blog throughout the month, but it most certainly will not be all 31 days. 

I like the idea of a dedicated time to spread awareness about Down syndrome, to build acceptance of our children and loved ones, and to help new families by providing information and support.  The reality is, however, that the main people reading my blog (if any these days!) already have children with Down syndrome over the age of newborn, and are all out there spreading their own awareness.  I love that, and think there's probably not much new and different that I can provide here.  I may do a few soul-baring posts, drop in some photos, complain about the usual issues, and, perhaps, bore you to tears as I'm doing right now.

So, back to our hum-drum life, today was picture day at school.  Remember this post?  About photographing the oddly-reluctant child?  Like, my child?  Like, my gorgeous little model who poses, preens and prances for my camera, but who usually freaks out in front of any kind of formalized photo?  Her history of school photo-taking is laughable.  Even going back to preschool.  The crossed arms, the lowered head, the pout.  She's got it all.  Miserable.  There was one year that we couldn't get anything out of her.  She dug in her heels and flat-out refused to sit for the photo, either on her own, or with her class.  One year we got the pouty pic.  One year we got the smile that came through eyes reddened and tear-stained, a smile so sad and pathetic that anyone who sees it feels horribly sorry for her, for the ordeal that she'd just had to go through.  One year Steve was in attendance, with the hopes that the presence of a parental cheerleader would smooth the rough edges.  Nope.  Got nuthin' from that, too.  Last year the photo was so freaking awful that there was no way I was going to allow it in the yearbook to be viewed for years to come by classmates.  I wouldn't embarrass her that way.  So, recalling that one of the standard back-drops was a purply color, I marched her into the main floor powder room of our house, had her stand up against the purply wall sandwiched between the toilet and the sink, and snapped a few shots, cropped them, and sent them to the school for inclusion in the yearbook.  And, to be honest, at a quick glance, you really can't tell that the shot had been taken somewhere else.  Well, it didn't stand out so much that it would draw attention to itself, thankfully, and trust me, I was fully prepared to have to do the same again this year.



today she cooperated.  Or so we've been told.  Can you see how I'm jumping up and down with joy??  I'm SO excited, and can't wait to see the photo!  This is a HUGE step!  Of course I didn't send a check for a photo package in with her (can someone please tell me whose inane idea it is to have parents pay for the packages up front before getting to see the image?), but I'll hope they'll let me do it after-the-fact. 

And now we wait.  And revel in the happy stuff instead of dwelling on the note we got home from the AP today about her behavior... 

More on that another time.  Little stinker...

Tuesday, October 1, 2013


Oh, goodness, I'm really honored to have been awarded the Liebster Award by Rochelle over at The Cannon Chronicles!  I'm always so horrible at following through on these things, but can never get enough of reading them on other peoples' blogs - we learn so much from people by reading what they write on a daily basis, but there are still so many things we have absolutely no clue about.  With the simple questions she asked me below, maybe you'll learn a bit more about me.  I can't promise you any of it will be even remotely interesting, but I'll sure try.  :-)  Thank you, Rochelle!

1.  Why did you start blogging?

I started blogging because I wanted to let family and friends know what we were up to.  Samantha was about a year old, and I began to realize that she was starting to do exciting things, her personality was shining, and I had a lot to say about that.  As time went on, the blog evolved and developed a bit more depth.

2.  What is your passion that you want your readers to get out of your blogging?

That I love my kid more than anything in the whole world.

3.  What are some of your favorite blogs to read?

Oh, dear - this is a tough one!  I've slacked on my blog reading a lot lately.  There are a lot that I love, though.  I guess the ones I like best these days are Garden of Egan (Leah blogs about her 4 children with Down syndrome, one biological, 3 adopted, and I am completely riveted by her descriptions of the processes of bringing each child home from Serbia and introducing them to family, structure, and love.  It's really amazing watching each personality unfold, each transformation they all undergo) and Our Little Chilli Tribe (Jenny has a gorgeous family, and her youngest child, Russell, has Ds.  She's not afraid to tell it like it is, and her journey over the last few years has been pretty remarkable, going from frustration and sadness to acceptance and joy.  Her writing is raw and heartfelt, and her photos of life on the ranch get me every time.)

4.  What is your favorite singer/band? why?

While I never had any sort of affinity for it in the past, I'm currently trying to listen to more pop music in the car, trying to introduce Samantha to popular culture so she can have a chance at understanding the things her peers are talking about.  My long-term favorite band is The Cramps.  If you're not familiar with them, I won't say more - you can investigate for yourself.  If you are familiar with them, I'll just say that Lux is missed.  :-(  My current pop-music favorite is, shockingly, Rihanna.  Oh, and Justin Timberlake (love his old-school style!  Takes me back to 1983...).  And I love that song, "Royals," by Lorde, but I don't know anything else by her (did you know she's only 17???). 

5.  If you could have dinner with anyone who would it be and why?

From the time I was about 14, I always said I wanted to have dinner with David Bowie.  And it's not like I listen to him regularly anymore - on the contrary - I have absolutely no idea what he's put out there in the last, uh, two decades, but I still think he'd be an awesome dinner companion - such a fascinating man who has got to have some pretty incredible stories to tell. 

6.  What is the best decision you ever made?

Moving to the town we live in now.  We could not possibly have picked a better place to raise Samantha.  We moved here when she was 3, and have never looked back.  It's safe, it's got amazing amenities and is close to so much great stuff for kids and adults!  The school system is fantastic, and there just happens to be a huge Down syndrome population here, too. 

7.  What is something you wish everyone knew about you?

I'm actually pretty shy.  Shocking.  I'm one of those people who can fake it pretty well, but then, in my nervousness, I'll say something completely stupid, and wonder, "why the hell did I just say that??"  And, of course, whoever heard it would be thinking, "what's up with her?"  Yep, I'm that person.

8.  If you won the lottery what would you do with the money?

Probably just pay off the bills, donate a bunch to several worthy causes, buy a fancy camera lens, buy a fancy house on a beach somewhere exotic, buy a fancy house in my own town, buy a fancy house in England, buy my parents fancy houses,  and hire someone to clean all of them.  And then invest the rest.  I'm not a very extravagant person, and have little interest in cars, jewelry, etc.  My husband may have something a little different about how the money is spent, though...I suspect his would involve cars, buying a soccer (sorry, football) team in England, and starting a fish and chips business somewhere here in the US, something that's sorely lacking in his opinion.

 9.  What are your hobbies?

Taking photos, editing photos, writing my blog.  That's about it.  However, if I won the lottery, I'm sure I'd take up a whole bunch of new hobbies!

 10. What drives you?

Let's just say who drives me.  LOL  My husband, who didn't get his driver's license until Samantha was born, was too afraid to drive so for 15 years I did all the driving.  While I love to drive, it was starting to get a bit old.  But the minute he got his license he got a huge amount of confidence and now insists on driving everywhere.  He's a great driver, too. 

What drives me?  Okay, Samantha does.  Knowing that everything I do is for her. 

So now I have to nominate a couple of others for the Liebster Award.  No doubt about it, I'm going with Jenny (Our Little Chilli Tribe) and Leah (Garden of Egan).  Here are some questions for the two of you!

1.  How would you describe your blog?
2.  What are your favorite TV shows?
3.  Describe yourself with 3 adjectives.
4.  What's in your fridge right now?
5.  Who has had the biggest influence on your life and why?
6.  You have a genie in a bottle ready to grant 3 personal wishes, just for you - what would they be?
7.  What would you change about yourself?
8.  Who's the celebrity you'd most like to meet?
9.  What accomplishment are you most proud of?
10.  What's your favorite easy recipe that doesn't require ingredients that wouldn't ordinarily live in your cabinets?