Monday, July 28, 2014

Tea and the Acceptance Cycle




All aboard for some honesty, okay?

I was having a really hard day earlier this week.  I mean like asphyxiatingly Jonah hard.

I glanced up to see Amelia and Elise nose to nose, fighting over whether the show was over.  Elise said yes, since the music wrap up had started, Amelia said no, as she wanted to watch them dance into the credits...

And it hit me like a blow to the gut.  They are exactly the same size.  Exactly.

They should not be the same size. Elise should be talking about teen things and looking like a woman. She shouldn't be the same size as her 8 year old sister who is 4 years younger. She shouldn't be more difficult to understand than her 5 year old sister. She should have friends to call and text, not a puppy to play Doc McStuffins with....

(Which was super cute, by the way...)


Here's the thing.  You don't just accept Down Syndrome and all the disabilities that may or may not come when your child is born, and go on, never a thought to what might have been...the side paths sneak up and you have to re-deal with the now, every once and a while.  And it doesn't mean that it isn't worth it...or that you would do it differently...just that it's never done.

I have said repeatedly that I am glad that I am a bigger woman and that I enjoy being strong.  Ethan was tussling with Elise yesterday, and accidentally picked her up more than usual, and realized how big she's gotten...and realized what kind of task I face every time I go into a store...as I literally lift her up and into the big part of the buggy 80% of the time...beyond the keening at lights or abruptly running off.  I am glad she is small of stature (4'6"), because if she was as tall as a few of her more docile friends, I'd be hard pressed to deal with her sensory meltdowns...and because of her profound struggles in public settings, I am thankful she has a visible disability.  As I've seen with her sister, who also has sensory issues, people aren't as forgiving with the invisible disabilities...

I do get flashes of what might have been.  She is my most athletically inclined child.  She really LOVES sports...but she struggles to play.  She is a leader and commander...but people struggle to understand her.  She adores babies and animals, and they love her.  She would have been the consummate babysitter/pet sitter.  I hope she will find a niche that will give her responsibility and independence in an area that she thrives in...but for now we are still looking and supporting and training.

Sigh.

I know this a little bit of a dark post.  But it's not all gumdrops over here.  And that's okay.

We walk on.  And enjoy the puppy tea parties.





Sunday, July 6, 2014

A Letter to Myself...and all those who are trying to sort their lives.

The Blog Hop Prompt this week is a Letter to Your Younger Self.  What would you go back and say?


Nothing is wasted. 

I know that so many of us roar through life looking, searching for the grand moment.  We all search for the moment where everything clicks together and makes sense.  We all want to know that the struggles were not for nothing.  For as hard as we fight, we want it to Mean Something.

I know that that Moment is hard to sort.  I know that sometimes it comes to us early in life, in a vision or life plan.  Sometimes we stumble and get a flash of it.  Sometimes we are forced to wait and look back to see how it all fits together.

Education, therapies, struggles, our own disabilities. 

I just want to take this moment to say:  Everything eventually gets used.  For you, for your kids, for friends and your friends' kids.  You can smooth other people's paths.  You will get to see the entire spectrum of life. 


 

Like a prism of light, when you are forced to slow down and break everything in life down to manageable bites for yourself, for Elise, you can see each individual color and the magnificence and beauty of all the bits.  Even the bits will become more amazing and more beautiful.  The weight of what rests on the simple building blocks will make them more treasured.  More magnificent.

The hours "wasted" on other paths, on schooling, on volunteer hours, on experiences on the emotional blood, sweat, and tears...they will be accessed for other reasons.  You will have a library of experience and understanding to withdraw from.

You will be able to see the progression of your own life and understand the progression of what has happened and what needs to change for yourself, in order to come along side to support others, in order to gird your loins to join the battle of change. 

You, and your socially inept and painfully awkward self will have been forced to understand, to breakdown interactions.  You will learn how to propose change in the most effective manner.  Because you came in too hot and argumentative, and you watched people bow up.  Because you yourself felt crushed under forced/regulated change, you will understand how to suggest change gently but word it persuadingly.  You will come to know how important the manner of communication is.  Which is funny, because that's always been the biggest struggle.  But having to break down the nuances of communication and people's receptive communication has made you hyper aware of how to say things....and that no longer makes you weak, it makes you powerful. 

 You have fought in big battles before, and you are brave enough.  Your voice matters, and it needs to be said.

My View Is Upside Down and It's Cool (My Connection with Disability: An Introduction)

I decided to participate in a Blog Hop.   I don't always even though it's a neat idea, because as soon as a subject matter goes up, my brain shuts down and I sound like a stuttering squirrel...and it usually morphs into other subject matter that no longer has any application on the original tag line.

This one is interesting on several levels for me.  I am always curious about my fellow bloggers' stories.  I have also bumped up against the fact that several folks have shared the not edited versions of their stories, and have offered advice to me and friends that I would never have known to go asking about.

SO:

"My Connection with Disability: An Introduction"

I have muddled through bits of my own story before.  I am not super comfortable with sharing all that mess...and so I only let out bits...and edit...  I am going to try to shrink it down a bit for you.  And frankly, it's going to be a little out of order.  Because that's how my story actually goes...most of the time.

Ok.

I am a former inclusion teacher.  I got interested in this before I actually knew I had issues. 

I was in middle school when I read a few books that were written by people who had disabilities.  And they spoke to me. 

That's how I got a lot of my information growing up.  I didn't go around asking...I went wandering in encyclopedias, dictionaries, and card catalogues.  I would cross reference.  I would read more.  I could lose whole weekends in the encyclopedia.  I shudder to think of the black holes I would have fallen into if I'd had access to the internet before college.  I mean, I am jealous of the information adventurers now, for the ease, but I don't know if I could have extricated myself to rejoin the real world.

I had opportunity to volunteer in a severe and profound special needs school when I was in high school, based on the books that I had read, I jumped on it.  I loved the kids.  I loved the teachers who worked there.  I was jealous of the therapists who worked there.  Their JOB was to figure out how to make the world accessible to the kids and how to make it make sense to the kids and to lure them into trying it.  It was like a giant physical and emotional puzzle box.  I loved it. 

I recently found my reflections I had to make when my time wrapped up there:
http://superdownsy.blogspot.com/2012/06/blast-from-past.html
While my wording was somewhat blunt, calloused, and CERTAINLY not politically correct, my passion was evident.

I had always chalked up my connection to disabilities to my dyslexia. (That I only figured out on my own in math in middle school.)  I felt that I had a taste of seeing things that others did not, a taste of struggle, and an awareness of how to tweak the world by 25 degrees so I could make it work.  School did not come easily.  Information was a passion, but the structure of school was stifling.  I always said I had senior-it is before I started high school.  I was ready to quit school and start the real world at 12.  I HATED school.  Now, lest you think that means I did poorly, no.  I did darn well, as long as I was handled loosely.

As I got older, I bumped up against my inability to understand why other people did irrational things.  I mean, I knew I was stressed out about things that were "silly" to my friends, but they would act on emotions, and my patience would completely cap out.  I was very abrasive in my dealings with others.  I would read books that would tell me in words how those irrational decisions would come to be made, and I would be able to give grace to the insanity that I viewed.

I suffered through college and opted into every alternative program that put me in the real world that I could.  I suffered through pre-therapy classes, stacking my science credits and volunteer hours in Occupational and Physical therapy.  I lost my battle for my GPA in Physics and I finally got my middle school teaching degree, and got a job.  I expected it to be in science.  It wasn't.  It was in a high school teaching Spanish.  I got it on accident.  I sort of got my minor in Spanish on the way through college, it was never my intention.  I just took classes for fun, because they weren't stressful.  I liked how the language laid on my tongue.  I enjoyed the lilting happiness that the sounds suggested to me, so I took whatever classes fit into my schedule.  My senior year of college, my advisor told me that I lacked a credit to get a minor, so I did.  It got me a job because there were not enough Spanish teachers in the county we moved to.  Eventually I was forced to move to middle school because of regulations, but that was ok.  I slipped into an inclusion suite, and I ended up attending every single IEP meeting I could, because I felt that the kids deserved every man on board they could get.

While I was in college, some information came out about my own elementary school.  I remember dealing with gargantuan anxiety in 1st and 2nd grade.  I remember being tested, so many vials of blood, because of my stomach aches and vomiting.  I remember being tested in dank, dark offices at my school.  I remember my parents being visibly stressed.  I remember being offered to go to 5th and 6th grade reading classes...I don't remember them telling my parents that I should have been medicated.  I don't remember them recommending to my parents that I should be placed in a self-contained classroom.  I do remember being pulled out at Christmas to be homeschooled.

My mother got her school diagnostician degree while I was in college.  She was adamant about putting me through the testing battery.  And she cried and told me how sorry she was that she hadn't been able to meet my needs when she had homeschooled me.  Turns out that I had Asperger Syndrome.  I had very little tolerance with this new label.  It didn't help me and I was convinced that she was seeing the boogerman in the closet. 

While teaching middle school, I had Elise.  She had a post-natal diagnosis of Down Syndrome.  And has had a laundry list of medical issues to go with that...and I have met TONS of people dealing with differing diagnoses in the waiting rooms of specialists.  And because of my odd wiring of social function fringes, education, and medical education...I'd ask questions...so many questions...and because everyone is bored in medical waiting rooms, people would answer...and I have received so many stories and so very much information...

As Elise has gotten older, the label that I have had the most struggle with is not the Down Syndrome, it's the Sensory Processing Disorder.  She has never gotten a formal diagnosis because the Down Syndrome takes care of all her therapies for that aspect of her life.  She has struggled and struggled, with sensory defensiveness (actual medical term in her chart).  Her therapists have all concurred with that diagnosis (at the least) and her pediatrician includes it on all her therapy paperwork.  During difficult flares, we make appointments for years out with autism groups, but they've never worked out to attend because you have to make them so far in advance, and she invariably is sick and is dealing with bigger or more immediate issues on the days we are supposed to go.

My second daughter is battling the Dyslexia Demon.  My youngest daughter is fighting the sensory battles...and she is deeply in...  My 15 year old son has ADHD and Elise has ADHD.

There is nothing like seeing your kids battle your demons to make you come to grips with the reality of your own disabilities.

I have ADHD (Actually the tester, when we went in for my son, told me that I really should look into taking the test so I could try out some ADHD meds.  True story.)  How I actually found out for myself is a little funny:  http://superdownsy.blogspot.com/2011/06/adhd-and-apples.html

I have Asperger's.  I have nothing but anxiety for kids I see around me on the spectrum.  Not judgement of their parents, mind, but genuine worry that that will be forced to figure out life around them the hard way.  Since entering the world of education and walking alongside Elise and my youngest, I see the therapies and supports out there for them and I am driven to tears of appreciation that they have that available to them.  That they can be themselves without being yelled at by teachers for be disruptions or smart alecks, when they just can't comprehend the information in the format that is being offered.  It is GRACE, I mean, I know it's technically education, but it is such a different path that can be taken now.  It's also why I panic when I see the school systems going more and more to pat tests...they can't even know how many kids will be sacrificed to the glorious cookie cutter...and how much we will lose by forcing them to look with the same perspective...I shudder to think how many Albert Einsteins we are telling to sit down and test well.

I have Dyslexia.

I have battled depression on numerous occasions.

And I have lived to tell the tale.  I am proof that if you are given enough tools, you can live life and enjoy it, even if it is not typical. 

I realize that not everyone's story is like mine, but let me assure you, between my own story and my story that is still being written with my kids, you don't have to live the life everyone else does to be at peace and genuinely happy.