Quick Awwwwww Factor...

Before we enter this much-needed weekend, before we say goodbye to the crazy work/school/appointment/everythingelse week that we'll be only too happy to put behind us until the next one begins, I have a quick photo to share. 

This is Samantha and one of her classmates during the "Read to Someone" portion of the day on Wednesday.  I love that little boy - she's known him for a few years, and he's just so sweet with her.

C'mon everybody, let's hear the collective, post-Valentine's Day "Awwwwwww..."

Sweet Day

Valentine's Day is a funny one to me, especially when it comes to celebrating with children.  I don't actually remember what my parents did for me on Valentine's Day, which leads me to believe that it wasn't that much of a big deal other than the excitement of getting all of the cards from my classmates.  Sadly, though, I also recall how painful it could be when I opened up my little bag of paper treasure to find that some of the cards were the ones with the frogs on them, or the dogs, or the not-flowery-sweet-girly ones.  I don't remember if those came from boys entering a stage of bashfulness around the opposite sex, or if they came from girls entering a stage of cattiness and cliques.  But that was always hard, my young brain not mature enough to understand either of those concepts or the idea that a box of Valentines only had so many flowery-sweet-girly cards and a whole bunch of the others, so someone invariably ended up with them.

I'm a little torn about how much to do for Sammi on this day.  It's not a big deal, in all honesty.  But since I feel like I lack a little bit in the setting-of-traditions for her (partly because most of the time she couldn't care less), I wanted to make this one at least a little special for her.  Steve and I got her cards and chocolate candies (oblivious to the fact that she won't eat them - M&Ms are her only candy poison, a fact that hit me as I was leaving Target yesterday with the mini-assortment box...), and I picked up a pink mermaid Barbie doll/bath toy.

At the last minute (read: yesterday) I remembered that last year I'd made Valentine's cookies for her teachers, so after she went to bed I raided the cupboards and googled a recipe, and came up with these babies:

Ridiculously easy, I realize now why sugar cookies are likely the most popular cookie to make - they contain ingredients that anybody who eats food should already have in their cupboards and refrigerators.  I made use of the heart-shaped cookie cutters I bought for a buck or two at Target after Valentine's Day last year as well as the heart-emblazoned treat bags I had the forethought to buy an extra pack of at that same time.

To make Samantha's day a little sweeter, I put a cookie in her lunch box along with her ham and cheese sandwich and a little heart-shaped note to tell her Happy Valentine's Day. 


I leave you with an appropriate quote this morning from the "Believe" book that Sammi's teacher gave me:

Believe that passion persuades.

 

 

"...everything in life responds to the song of the heart."

           ~Ernest Holmes

 

 

 

 



Water Safety *Finally* Addressed...

I'm about to face one of my biggest fears/concerns for Samantha.  Something that's been terrifying me for many years now, something I feel she is dangerously limited without.  Hell, something she's just *in danger* without.  I finally bit the bullet and arranged for private swim lessons at our local community rec center.  Samantha loves the water, absolutely adores it, but has absolutely no sense of how dangerous it can be without knowing how to swim.  She likes the idea of swimming, but honestly has absolutely no clue how to be safe in the water, or, for that matter, even how to hold her breath in the water.  If she gets water in her face, or, more likely, if her face gets in the water, she inhales/swallows/chokes/sputters/cries, and it just drives home for me how critical it is for her to learn to be safe.  I can't always be holding her at the pool until she's big enough to stand up on her own in there.  Not to mention, what if she were to trip?  She wouldn't know what to do, and would just panic. 

I sometimes dream of owning one of the big townhouses lining the pond a few blocks over, but the first thing that pops into my mind (besides the slightly important fact that we can't afford one...) is that Samantha wouldn't be safe.  I haven't yet arranged the start date, but we'll be doing it on Sunday afternoons, which is just perfect for us.  I really want her to have some sort of foundation before the summer this year.  I'm sure I'll be updating her progress here as we go.

I can't help being jealous of all the kids with Down syndrome who are just so natural in the water, who seem to be part fish, taking to holding their breaths (how does one teach this concept??) and staying afloat with no hesitation.  Not comparing, just jealous.  :-)  I hope that with the right instruction, Samantha can pick it up easily.  I know she's proud of her accomplishments, but at what point will fear overcome the promise of that pride?  Only time and multiple lessons will tell...

A Little New Perspective and Some (Possibly) Useful Information

Samantha, at about 9 months old, at a time when the school process was just a blip in the way, way, way off future...

So, after last week's post about how low Samantha's cognitive development (IQ) scores were, I had a very good friend, who has a career in the field of mental health, point something out to me that I had completely overlooked in my typically emotional response:

Her score is against *typically developing children.* 

Of course she's going to score low!  She is not, in any scientific sense of the word, a typical 6-year-old.  Granted, she certainly doesn't test all that well most of the time (even though it was reported that she was being cooperative), and was likely doing some of her own testing of the school psychologist at the time, but that test result was actually not very bad at all.  I should have seen that initially, but, as usual, I let my knee-jerk emotions get in the way of the truth and cloud my objectivity.  Not like I wasn't fine with it anyway, but I did feel that jolt that we all get when our children are evaluated.

One thing that really surprised me, however, was how biased I was when initially viewing the score without having yet received that new perspective.  Suddenly I began to wonder if Sammi wouldn't be able to do all of the things I had hoped and dreamed for her to do.  And really, I had to force myself to remember it's all nonsense.  This test is not a measure of her abilities, either present or future. 

I heard from many parents of younger children who said that they had a tough time facing their child's first evaluation, for entry into the public preschool system.  And yes, that's a really tough one to swallow, too.  To see your child's abilities in the context of age comparison (who really wants to hear that their 3-year-old is developing at an 18 month level?  Ugh.)  I have no advice, except to just take a deep breath, be happy that your kid is getting services (provided they are), and wait to see how they do once they get into the classroom environment.   I'm willing to bet that in at least 95% of the cases, the children thrive under an attentive and caring teacher.

I had a few people ask me to write about the process, how to navigate it when they get to this point of requests for IQ tests and label changes.  I said I would, but I honestly know that there are so many ways of looking at this, so many other experiences, so many people who would beg to differ with me about my way of going about things.  So all I can do is tell you our side in this.  For those of you who may know differently, please forgive me, I'm just writing what I think I know, based on my research and experiences over the last few months. 

To get into school, our children need to be evaluated for eligibility for services.  Often a psychological test called the Batelle is administered.  It's not an IQ test, nor is an IQ test necessary.  The Batelle, in conjunction with speech, gross motor and fine motor evaluations,  does score the child's development.  The child is given a label, which is, in most cases, DD (Developmental Delay).  There are other labels, but this one really encompases our kids pretty well in a nutshell for all intents and purposes. 

Before the age of 7 (at least in our state, and from what I've heard from so many others, but I'm not actually sure if it's the case everywhere), the label needs to be changed, as DD no longer exists beyond that, and another evaluation for eligibility needs to occur.  If you ask me why there needs to be labels or label changes, I can't really answer that.  It just is.  I get that.  I've heard it for years now.  To change that label, more testing needs to be done.  Again, speech, gross motor and fine motor evals will be done, along with an academic eval, vision and hearing screens, and a psychological evaluation to measure cognitive development (IQ test). 

So many people fight against the IQ test, and I totally understand why.  However, the availability of new labels is limited.  None of the labels applies to Samantha except ID (Intellectual Disability), which requires the cognitive testing to get it.  And people hate that ID label.  Here's my understanding of why.

Think about it.  You have the ID label, a perfect IEP team who know your child and his/her abilities and strengths, a loving, nurturing, inclusive classroom environment in which your child is supported and his/her needs met.  And then you move.  To another school/district/county/state.  And before your child even sets foot in the new school, you have an IEP meeting to determine placement.  The team, all strangers before you, takes a quick look at your child's name, age, and label, and determine, prejudicially, that because the child has an intellectual disability, because their school/district/county/state is strapped for cash and the budget is tight, they need to get that child into a self-contained classroom to save their resources, lighten up the already bursting-to-capacity general education classrooms.  (I'm definitely not knocking self-contained classrooms here.  That setting is absolutely critical for some children who thrive better in that environment.  I'm refering only to the example of a child thriving in an inclusive setting.)  And then the fight begins. 

So, in my understanding, that's why people dislike the ID label so much.  I do, too. 

BUT there are options to avoid it.  In our case, because that is the only label applicable to Samantha, we needed to be given that label.  To be given that label, we needed the IQ testing (the testing score is not relevant to the process, really - just the fact that she does need services).  Now that we have that label, we have signed that we do not agree with that label, and are requesting an appeal.  At the appeal (not a lengthy process - just another meeting of many of the same people on her team), we will request the alternate title, Child With a Disability, a label that you may not have been told about.  A label that is kind of an overlay over the ID label, a label that will force future administrations/educators/schools/districts/etc. to look more closely into Samantha's file to determine exactly what the nature of her disability is, to see all of her strengths, to see what she's accomplished, to see PAST the fact that she *does* have an intellectual disability.  Does it mean we won't have issues down the line?  No, but if it can minimize the risk, then I'm all for it.

Once that's finalized, we don't have to have the testing anymore.  We will have the option every 3 years, I believe, which may be useful if we needed the new information for some reason or another, but we will not again be required to have it for any reason.  And I have been told that we may need to change Child With a Disability back to Intellectual Disability at some point when Samantha is around 16 years old, although that would be our own choice and would have something to do with securing post-educational services.  I'll have to do more research to find out about that, though.

So there you have it...

And Then It Hits You LIke a Ton of Bricks

Yesterday's post, fueled by the receipt of Samantha's report card last week, talked about acceptance and the shift of expectations that occurs when you realize that all things do not look the same for all people, that that cookie-cutter shape that you think designs the goals for your child's development and future does not actually exist.

Today's post is fueled by the receipt of Samantha's psych (read: IQ) evaluation yesterday, in advance of tomorrow's eligibility meeting.  Those of you who were around me on Facebook lastnight know what I'm talking about.

It hit me like a ton of bricks.

I had expected low. 

I did not expect that low.

And, it seems, according to the report, that Samantha, while off to a sluggish start, became a willing participant for the psychologist. 

So, how to view these results?

Big picture NEWS FLASH!!!!

I don't have to.

The results do not matter in the grand scheme of things. 

The question is not so much how to view the results, but do I have the FORTITUDE to view them *objectively* and move on.

Move on.

That's what I'm doing.  Tomorrow's meeting is not about the score.  (Well, I suppose it could be if she somehow scored as a genius - we may lose eligibility if that were the case!)  It's strictly about eligibility.  We could not previously find her eligible under any of the available categories if she did not have the psych testing.  She has to change her label from DD (Developmental Delay) to something else by the time she turns 7.  Don't know why, but that's just the way it is (oh, how I hate saying something like that - I'm taught to question things, but this one, as far as I know, cannot be questioned).  To get the ID (Intellectual Delay) label, which best fits her, we needed the testing.  Once we get the ID label, we will make it clear we don't like the wording, and will ask for Child With a Disability, something a bit more palatable, something that will force anyone in Sammi's educational future to look further into her file before making judgements.

So I take a deep breath, gather the strength to keep my mouth shut about the test results at tomorrow's meeting because, again, that's really not what that meeting is about.  It's just a means to an end.  The participants in tomorrow's meeting are not against us, and are looking out for Sammi's best interest.  I know that.  And once the end result is achieved, we move on, and don't look back.  Apparently the IQ testing is an option every 3 years going forward, not a requirement.  An option that we may choose to do, if we feel something may need to be changed, or if we feel we need some more accurate answers than we have just received.

And for now, I gain strength from the fact that those test results are not an accurate gauge of who Sammi is, of what she is capable.  The people who surround her every day, us, her teachers, her friends, all know better.  A friend posted this for me on Facebook lastnight. 

It speaks volumes.

(okay, so don't look at the fact that there's no apostrophe in the 3rd "its" - I tend to be a bit anal-retentive about that kind of thing!)

The Shift of Expectations

There's a cookie-cutter mold that expectant parents begin to build for their children, a mold that includes dates and times, expectations of success in all pursuits, educational and social alike.  It may include preconceived notions of milestones hit, grades received, career choices selected.  And, as good little unborn babies, we do not disappoint, fueling the acrobat/quarterback/violin-playing dreams with every kick or nudge of an elbow in mommy's ribs.

When we, ourselves, were born, we were given many of the tools necessary to meet those expectations, the books, extracurricular activities, enriching outings to museums or science-supply warehouses, musical instruments, lessons, you name it.  And we never wanted to disappoint our parents.

Yet, we invariably do in one way or another, at some time or another.

When a child with a disability is born, a ghost of those expectations continues to linger for some time. 

"What are your *expectations* for her first year?" the Early Intervention people asked on their first visit to our home to evaluate our 6 week old baby. 

"Well, I *expect* she will be walking at 12 months,"  I responded with the honesty and naivety that only a frightened new mother, still feeling the strength of her baby's kicks, could muster. 

After all, isn't that what babies do?  At least that's what all the books say...

And, over time, those ghosts became replaced with the new reality, the one in which our expectation shifted to accomodate delays and the understanding that our child will do what she will, when she is ready. 

Report cards?  Pshaw!  My childhood drive to receive only Outstandings and Exceeds Expectations and straight A's, a drive born of the knowledge that that's just what one does, no longer sits within me as a requirement for my own child.  I know she works hard, I know she tries.  I also know it's not realistic to have the same expectations.  Are my expecations high for her?  Absolutely.  I expect that she will work hard, will try, will do the best that she can, and I expect that what she does will not be perfect, and I expect that she will make me proud, no matter what.  Straight A's?  I do not expect those.  As a matter of fact, I'd be highly suspicious of her educational team if she did get that. 

Samantha's report card came home last week.  When I was a child, that was one of the most exciting events of the school year.  I received money for each A.  I loved to see how well I was doing at school.  But to be honest, I have barely even skimmed Samantha's report yet.  As a contributing and communicating member of her educational team, I know that there are no real surprises on it.  Oh, don't get me wrong, I will be reading it, carefully, but we maintain such direct contact with her teacher and supports that we pretty much know what's there. 

And our expectations of what is there are very different than the expectations we thought we'd have at this time, back when Samantha was a mere tadpole.

We see progress.  That is what's important, not As, or Outstandings or Exceeds. 

We expect this.  We are proud.


(Note:  This post was coincidentally similar to the discussion requested by Lisa at "Life as I Know It" this morning on her blog hop.  I hope you'll hop over there and read what she and others have to say on this topic as well!) 

So Many Faces

After brutally cold, semi-snowy weekend, I actually have nothing of any substance for today.  I'm still working on photos and posts for Fashion and Frugality (for Kids) (new post up this morning!) and have had little time to devote to any upcoming posts here.  And I'm planning on pimping myself out soon for another giveaway.  Speaking of pimping and giveaways, you still have a little bit of time to enter the HSN giftcard giveaway on THIS post.  I'll figure out the winners on Thursday morning and announce them here.  In the meantime, here's some eye candy from my little camera-ham.

 

Faker

 

 

Manipulator (awww, c'mon...)

Giggler

Backpeddler (It wasn't me!)

Angel