Monday, November 14, 2011

Fast dose of reality...

Sometimes I just crack myself up.  Last week, when I started this blog, I was feeling pretty confident about how things were going for K, my extra-special kid.  After all this time, I should know that in this journey, confidence is a slippery slope.

Had a team meeting for K to check on her progress since our last meeting.  In attendance: me, my husband,  K's classroom teacher, the resource specialist, and the principal.  That was a small group!  Usually we would also have our advocate, the speech therapist and the program specialist from the school district.  Yes, we usually have someone from the district at our meetings because we always ask for more services.  They need to have someone as the budget barrier there!  In our case, however, we are extremely fortunate that our team is truly that - a team.  I'm not so naive as to think that they will always do everything they possibly can without our even having to ask.  However, K's greatest gift is her ability to draw people to her (especially adults) and with her charm and personality, she wraps them around her little finger.  She's a natural giver, so people who work with her are genuinely committed to her best interests and success.

So, what's the fast dose of reality?  The progress meeting went well, but I was discouraged to find out that K isn't meeting the expected progress on several of her goals and in terms of her general ed classroom, she's pretty much failing everything except reading fluency (not comprehension) and spelling.  She's improving in writing and is successful with math computation.  Everyone can see that she is making progress, but her progress is not in line with what we had all hoped.  Whoops!  What was I thinking, feeling all confident?  Silly me...

Normally, that would not be a big deal to me.  As long as she is moving forward, I consider that to be good.  In this case, however, we are talking about the fact that she is not successful with grade level work in some of the most important subjects compounded by the fact that because she is pulled from the classroom so often, she is getting absolutely no science or social studies this year.  I had to ask the team what do you do with a child like that?  What is the expected trajectory?  I would have to logically assume that at some point, the expectation is for K to do grade level work and pass.  If nothing else, she has to have enough knowledge to pass the damn high school exit exam (yeah, because standardized testing - even when modified - is such an excellent tool to determine what a child has learned - note my heavy sarcasm).  Knowing that she is essentially not learning 4th grade, how do you move her to 5th grade?  The quickest answer would be retention.  That would be a reasonable consideration for some kids.  In K's case, it would be a disaster.  She would not be happy about not moving forward (in itself, not enough of a compelling reason), she is already an "older" 4th grader as she turns 10 this year (holding her back would make her an 11 year old 4th grader), and socially it would be devastating.  She has been with most of the kids in her grade since Kindergarten and it's already hard enough for her to engage with them socially.

That leaves us with considering alternate placement.  Alternate placement.  We've always been proud that K has been in a general education classroom since Kindergarten.  In most ways, she doesn't belong in a special ed class (we call them Special Day Class around here) and that isn't where we would want her to go.  However, at some point the school she is currently attending will not be able to help her in the ways that she needs to be helped.  We are rapidly approaching that situation, I think.  It isn't the fault of the school team because as I said, they are committed to K in ways that I've not heard of with any other extra special kid.  It is simply a matter of K needing something different to really address her severe language processing deficits.

As usual on this journey, just when I am feeling pretty good about things, reality has a way of kicking me in the butt and reminding me that there will always be something else to consider.  The job is never done, not even for a week or a day or an hour.  I've had to learn to laugh, at least a little bit, because I can't spend my days crying with a case of the "Why me???"  It's pretty easy to do that and believe me, I've spend more days having a pity party than I care to admit.  I think that's normal, but it doesn't help me or K to move forward and besides, I was serving cookies at the pity party.  Lots and lots of cookies.  It's really not a mystery as to how I gained 45 lbs in the early stages of this journey (good news - I've finally lost almost all of it!).  Learning to laugh a little is far healthier than eating more cookies, I think.

We will be doing research between now and our next meeting.  We need to figure out what we feel will be best for K so that when the team meets, we aren't starting from that point, but rather, we'll be ready to make a decision together.  Ultimately, we are her parents, so we will have the final say.  It's just a matter of us figuring out what that final say should be.

Wednesday, November 9, 2011

A rose by any other name...

Labels, names, categories - all different ways that we organize the things in our lives.  This happens a lot when you have an extra special kid.  We all do it.  Parents are desperate to know what is going on with their children when they have that intuition telling them that things are not going as expected.  Doctors and other professionals (and there will be many as you journey to a diagnosis) are also looking for a way to figure out your child.  It boils down to labels - the dreaded word.

If you think about it, there has always been a "hush-hush" about labels - especially as they relate to people who aren't "normal."  Let's not even go down the road of what it is to be "normal."  We'll save that for another post.  "We don't want to put a label on her because we don't want people to focus on her challenges," or "We feel that the label will limit her."  Those statements come up all the time and they are well-intentioned.  I've said them myself.  The problem is that the label doesn't limit the child nor does the acknowledgement of their challenges.  Only we can do that through our thoughts, our beliefs and our actions.

One thing I noticed early on in my quest to find out what was going on with K is that the possibility of even exploring a label made people uncomfortable.  Family and friends don't know what to do with it when you are talking about what might be wrong with your kid.  What happens?  You get the, "Oh, I'm sure she'll be fine." or the general redirect, "Look at that bird over there!"  ;-) I get that too.  Even today, I have to call myself into check when I see someone exhibiting a behavior that is outside the socially acceptable norm.  It is uncomfortable, but it doesn't have to be.

The reality is that the label is important.  And, it's just a word!  The label is my roadmap.  I can figure out what to do when I know what the problem is, right?  Except that whenever I bring it up, I somehow also feel compelled to defend the label, ultimately trying to defend my daughter.  "She has a learning disability, but she's really smart!"  "She has a speech disorder, but she is a good student and a very sweet girl."  The label has somehow come to mean that it is something bad.

I don't believe that.  These extra-special kids are often just as smart as their peers, maybe even smarter.  They have so many wonderful qualities and we should share those qualities with the people who cross our paths.  I just don't think the wonderful qualities have to be the buffer against the label.

In the book, Shut Up About Your Perfect Kid! by Gina Gallagher and Patricia Konjoian ( click here to see the book at Amazon ), the authors bring to light the idea that our perfection obsessed society has made labels shameful.   By responding to the label as shameful, the message we send is that we are ashamed or embarrassed and by extension, we teach our extra-special kids to be embarrassed too.  We shouldn't be ashamed or embarrassed!  These kids are amazing!  When we embrace the label, we acknowledge it as one part of them, but not the whole of them.  My daughter is speech delayed and smart and kind and loving, all at the same time.  My older daughter does not deal with the kinds of challenges that K does, but that doesn't make her perfect, either.  She has good qualities and some that perhaps need some extra work.  Who doesn't?

K's speech/language disorder and learning disabilities impact her every day, which is part of what makes her extra-special.  I don't hesitate to tell anyone about it, if they ask.  Often I'll tell them even if they don't!  My hope is that by embracing all of her, it will help the people who cross her path to look beyond that label - the invisible barrier - and get to know the girl that she is.

Who I am and why I'm writing

Welcome to my blog!  Mine, like many others, will be a work in progress.  This is a new adventure for me, but after having several people suggest that I start this, I decided to give it a whirl.

My name is Elise and I am a wife, mother, aunt, friend, daughter, advocate, driver, speech therapist, tutor and generally, all around busy, like most women I know.  I am fortunate that my primary job is wife and mother.  I am fortunate because like so many other people, I have two beautiful, healthy daughters.  S is 12.  She is smart, kind, outgoing, personable, responsible and very special in more ways than I can write.  K is 10.  She is smart, kind, loving, personable, working on being responsible, and she is also special - extra special.   K is diagnosed with learning disabilities and a speech/language disorder.  I could and have called her "special needs."  It is accurate, but I prefer to call her extra-special.  All of her challenges make her the person that she is and to me that just makes her extra-special. K is the reason I have things to share on a blog.  Our journey together has been up, down, sideways, backwards, forwards, and filled with learning opportunities.

I do want to make something clear - I am not an expert on learning disabilities, speech issues, IEPs, or anything else that may come up as a topic in this blog.  Nor do I think that I am of such great importance that I should be able to sit on my mountaintop and dispense words of wisdom as though everyone should listen.   I am a mom who has learned something along the way.  While there are tons of resources available for parents on a similar journey (and I plan to share those, too), sometimes it is hard to find them or figure out which direction to go.  Sometimes, those resources focus exclusively on the extra-special child without addressing what happens to the rest of the family.  Things I have learned along the way become easier to share now that some time has passed and I have the perspective of hindsight.  My hope is that this blog becomes something of a community of sharing for people who just want to chat about life with their extra-special kids.