Wednesday, October 1, 2014

31 for 21: Awareness is a stupid word.

Awareness is a stupid word.

There, I said it.  This is my annual blog challenge, of making a post every day in honor of October being Down Syndrome Awareness Month. 

I know this is silly, since I just promoted Childhood Cancer Awareness Month.  But it's a little different, stay with me...

Some awareness months make more sense.  Like:  "Hey, it's important to make sure you are aware of how your body works, so you can make sure you aren't broken."  Breast cancer, heart attacks, prostate cancer...stuff like that.  Also, awareness that promotes being involved to help research funding, that is reasonable.

Others are dumb.  "Hey, something like this exists outside of you and your circles of 'normal'."  Most people already know that.  You know how I know?  Because my kid gets crooked looks whenever we go out.  Anywhere.  People are darn sure aware she is different.  They may or may not know why, and the medical jargon of what causes her to be different is almost worthless at changing perception.  That eliminates only those who think they might catch her different-ness.

I am also aware that I am not 5.  I cannot catch being 5.  I understand what causes being 5.  I understand that being 5 is different than being 38. 

So.  Big whoop.

I confess, I am spoiling for a fight, a little, this year.  I am done begging for you accept that my gal exists and I am proud of it.  I am requesting that you choose to understand, and better your life for the knowledge.

If we did say, Down Syndrome Celebration Month, or Down Syndrome Appreciation Month, I think I'd be more excited.

Being aware that somebody is 5, is different that appreciating what it is to be 5 and the magic that inviting a 5 year old to share their perspective in your life.  5 year olds can play with abandon.  They don't care what people think.  They can create anything, they suffer no barriers of why something could not work.  They get excited by things that you take for granted.  They get ecstatic about things that annoy you.  They aspire to do the fantastic.  Their imagination is limitless.  They are lucky.  You should aspire to incorporate their "joie de vivre" into your dumb, boring, "adult" life.

Being with a 5 year old invites their perspectives to unravel your barriers, to grow you past others' strictures on you, and to reactivate your imagination.  It's terribly cool.  And you are reminded what you valued when you were 5.  You are refreshed.  (After you sleep off being tired from growing and changing so much, so fast, of course.)

Well.  Guess what?  Being with someone who has Down Syndrome can regenerate things in you, too.  They are awesome.  They are remarkably like other nice, boringly normal people. 

Because of all the medical jargon, they have to fight a little harder for "normal" and it may take a little longer, but they can achieve what you can.  But because the achievements in their lives were a little more like a Spartan Run, instead of a rolling walk through a meadow, their triumph is palpable. 

Because their training for the Spartan Run of life was more rigorous, they may be more focused and aggressive and (dare I say it?) stubborn.  They are also people.  Tired, pushed, and aware.  And they want to achieve what you do. 

Guess what?  You need to take this October to understand their training, their battle, and swear to come along side and cheer.  And sign on as training partners.  Offer experiential advice.  Offer support.  Offer water. And see the mud in their lives as a sign of their mammoth achievement, not as a sign that you are better or different.  See it as a sign that you should give your respect.  Offer camaraderie, not pity.  They don't need that any more than a rock in their shoe.  If all you are going to do is stick rocks in their socks and put obstacles in their way, get out.  And know this, when they overcome your barriers, which they will, you won't be making them look bad, you will look small and selfish, and they will look triumphant.

So.  Forget awareness.  Sign on for appreciation or celebration.  Or accept that your life will be the less for not "accepting" them.

Tuesday, September 30, 2014

Childhood Cancer Wrap Up

I was a little brutal this month.






Usually I tend to focus on Elise's journey with Cancer.  I dwell on her treatment, the people who blessed us, her miracle and the impact that it has had on all of us.
http://superdownsy.blogspot.com/2013/09/cancer-thoughts.html







Last year, I listed names.







This month, I shared photos of our friends that lost the battle. 







Lost.







These are people who are in my periphery of thoughts often.  At least once a month, usually more.  And not as a passing thought, but really dwelling on them.







I know their parents must have them in their periphery on a constant basis.







Children are the most resilient beings.  And not just in life, but medically.  They bounce back with truly awe-inspiring magnificence.  You can ask any medical professional, in any specialty.

If they had anywhere near the money spent on research that adults receive, I am sure that there would be breaking discoveries on a nearly constant basis.







Out of all the federal/public funding in cancer research, less than 4% is spent on children's cancers.  Out of ever $100, only $4 goes to kids.  That is paltry.  And that is ALL forms of children's cancers...tumors, leukemia, genetic forms, brain cancer...you name it...






You can google graphs, the survival rates have come up with increased funding.  They come up when they have people believe in them enough to say, we know you can find answers.  We will help you.  That's what your $5 says when you donate to St. Jude while you are Christmas shopping. When you send $10 to AFLAC or Cure Childhood Cancer, you are standing shoulder to shoulder against every parent's darkest fear...and you are fighting.  Earnestly.







Do our kids not deserve a fight that is armed with the latest information?  Do they not deserve weapons that work against this monster?







Would you go into battle with last year's information? 






And yet, pediatric cancer patients do, daily.







Fund them.  Find a chidlhood specific group, check on their financials, and donate.  If you gave like the goofy ALS ice bucket challenge, you could give children full lives.  And that was a social experiment whim.  Imagine if you engaged and fought with them?







They could go into adulthood, warriors.  They would be the ultimate survivors.  Their families wouldn't have to listen to the what-ifs in the back of their minds...they would know who they would turn out to be.  They would have the ultimate purpose: living life and impacting others.






My Elise is a survivor.  She won her battle with 10 patients on her protocol.  That means that it was BRAND NEW INFORMATION.  But that was also 10 years ago.  And I believe that is still the standard treatment protocol.  It's working, mind you.  We can say 10 years later, that she is still free from relapse or secondary cancers. 


We have another friend that won.  Her name is Ashlyn.  She is a tiny little thing with a soul of a Navy Seal.  She won.  Thanks to random Christmas donations.  Or people like me that have too long a list of those that Cancer took from their parents...and want it to lose, every single battle from now to eternity.


You can make that happen. 


Choose a reputable group.  St. JudeCure Childhood Cancer.  Your local childhood cancer chapter.  Beat it down.  Send it your coffee money once a month to them.  I don't care how small.  If everybody did it half the year, or when they remembered, you'd outspend the government.  In the BEST WAY POSSIBLE!!!











Thursday, August 14, 2014

Talk to Me

Yesterday, Elise had her six month assessment in her outside-of-the-school Speech Therapy.  I always dread assessments these days.  I mean, I don't care as much as I used to.  It used to make me sick how far behind her peers she was.  The gap just kept yawning.  But I like to see improvements, and those have been snail slow and miniscule.  My only comfort has been that we were still moving forward.
 
 

 
But Yesterday, People!!
 

Elise has improved in Auditory Comprehension by 5 months in the last 6. I don't think we've had an improvement this big EVER. I mean, do the math for pity sake.  Elise is 11 years 10 months, and as you can see on the paper, she stands in the 2-3 year range. 

In case you haven't read a million of these assessment papers like me, in Auditory Comprehension, she moved from 3 years/6months to 3 years/11 months.  Practically bang on the money!!  This means that she is improving in what she understands when she is told something.

She only progressed from 2 years/8 months to 2 years/10 months in expressive speech, but it was still movement.  Also, her speech therapist confided that most of the cut offs were BARELY missed.  You progress by blocks of 3 questions, and if you miss the 3rd question, even if you get 2 correct, you don't move up to the next level.  So, Kathleen told me that there were several blocks that she missed by one, only, so her progression may be impressive next time, too.

I've been pleasantly encouraged that Elise has been improving in her speech and enunciations.  I hear the change, and far more importantly, I see others understand her much better.  And here we have legal proof, that her verbal prowess is not all in my head!! And it means if it's there in her comprehension, it's all up in her head, which means it will eventually make it out in Expressive Communication....someday.

I have asked several of my friends with older kids with Down Syndrome about their speech progression.  They have encouraged me a thousand million times over the years.  There are many kids with DS that progress with their peers, with a few enunciation issues.  There are some that start slow, but catch on quickly as therapy and peers move in their lives.  There are some that take their sweet time and really come into their speech in middle school and high school.  It appears that Elise has decided to follow that last path.  But that peace for me is that there is still significant hope that she will continue to really grow before adulthood...and she won't be like previous generations where they stagnate due to lack of involvement in their world.  Elise would never stand for that anyway.  Being low in speech has never discouraged her from chatting up people out in public.

I have to take this moment to say that online social media has been the best thing in the world for the special needs parents.  You have more access to information and to veteran parents than ever before.

Recently, I have even gotten some information concerning Elise's fine and gross motor plateau.  I am girding myself with information in preparation for entrance into middle school.  And I'm starting to look forward to outside OT and PT for her particular support. 

When Charlotte (my youngest) took her sweet time to potty train, I had several mamas giggle and say, "Well, I've never seen anyone in Kindergarten in diapers."  And I was encouraged.  When I have a conversation with a veteran mama of a young adult with Down Syndrome, and she keyboard giggles and says, "All the adults with Down Syndrome I know, can button their pants and tie their shoes and talk to friends."  Well, frankly, it has the same heartening effect. 

And so, we Keep Moving Forward.


 
(credit)





Bizarre Blessing

This is another TMI post.  Probably.  But it is also one that is where I'm at.

Willow is a girl dog.  My first EVER.  I have had dogs, but only ever boys.  Boys, you either fix or you don't.  And unless there are nubile girl dogs around, it really doesn't matter much.  Especially if your dog gets car sick or you keep them at home. 

Our vet wanted Willow to go through one heat before her spay.  (Which was not even a discussion, if Willow is going out with us into the community, she MUST be fixed.)  Something about it being healthier...which I never could figure out why, something about all her hormones being happy systemically.  Whatever.  They are the experts.

I didn't really give it much thought.  I somehow thought it would be a few days kind of thing, tops.  SO wrong.  It's more like 2 weeks in larger dogs.  Yay.

Also, it looks like the dog is having a period.  No lie.  Yuck.  She's also all PMS-y and wants snacks and to nap.  So yeah. 

Elise is still all over her and wants to drag her around all over the house, so I bought her some reusable diapers that you put maxi pads in.  Elise thinks this is great.  She's all about the diapers.  She likes to choose the color and helps me stick the velcro on.  I never would have thought that she would have noticed or cared.  But apparently, if it involves her "Lillow", nothing is outside of her interest.

 



The bizarre part of this icky story, is that Elise has no comprehension that she may "become a woman" in the next year or so.  I've told her sisters, because they ask All The Questions, All The Time.  But if Elise were to start menstruating, it would be a completely blind-sided attack that would cause her to completely panic.  And the depressing part, is that I can do nothing to prevent that.  She has no concept of abstract ideas that don't fit into her interests.  The beauty of this whole Willow-in-heat fiasco, is that Elise is up close and personal.  It has suddenly become in her realm of interests and is noticed.  I cannot explain it the way I have with her sisters, but at least she will recognize it and it will not be frightening.  She will have an aquaintance with maxi pads and the idea behind them.  And so Willow has unexpectedly smoothed the way for the next giant hurdle in life.  I swear, I cannot thank this dog enough.

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.