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.









Friday, June 27, 2014

Willow Speaks

I owe you all a Willow update.  She is still happy here, and we are still happy to have her. 

She has a stomach fit for a delicate flower.  She is apparently allergic or overly sensitive to something in dog food.  Which has resulted in me dealing with far too many "virus/infections" than I care to disclose.  That said, I've finally put my finger on her gastro-intestinal distress, and I mix up a batch of rice, chicken, pumpkin, and broth once a week, and then mix dog food into it daily, so she gets the nutrients she needs without getting sick.  I cannot even begin to tell you the mess and stress that put on me and Elise until it got ironed out.

During that time, Elise had taken to sitting outside of her cage and talking to her.  And talking and talking...it was funny.  They apparently bonded deeply from their conversations, because now they are inseparable.  Elise will put her on her lead and drag her all over the house and talk "through" her.  Willow just loves the attention.

Here's the newly cool part.

Elise is stuttering again.  Badly.  She gets so gummed up that sometimes her singing and tapping out past it wasn't even working.  Sing-songing her words and tapping the syllables used to be the silver bullet that always fixed it.  But when she talks to Willow, she does not stutter.  At all.

Even more interestingly,  Elise has taken to talking through Willow as Willow's voice to express her feelings.  Willow, shockingly, has remarkably the same feelings about everything as Elise.  She doesn't like veggies, she's hungry, she needs a snack, she wants to read, she wants to watch TV, she wants to see the same movies, she hates the "loud in her ears" as we have construction going on in the basement....and so on.

And she never stutters as Willow's voice.

Even as she is petting Willow, and for a while after, the stuttering either doesn't show up or resolves quickly. 

I spoke to Elise's Speech Therapist about this phenomenon.  Kathleen told me that Animal Assisted Therapy is particularly effective, and there is quite a push to incorporate animals as much as possible, because it really does have an impact.  The animals lessen stress, and smooth many verbal disfluencies.  Even if there are only pictures, computer animals, or animal puppets, they see many of the same benefits, and it is still referred to as Animal Assisted Therapy.

So.  Not only are we seeing a decrease in Elise's anxieties and stress and sensory issues, but we are seeing a huge impact on her speech that we simply weren't expecting.  Willow is a lovey and I leave you with some of out latest pictures of the "girls" together.

(Oh, and Willow got a haircut for the summer.  I was terribly afraid that Elise would panic and refuse to believe it was still her, as it made her look incredibly different. But Elise knew her baby and loves it as it makes Willow's fur even silkier.)












Thursday, June 26, 2014

How We Get Early Intervention Wrong

This post is not isolated to Down Syndrome at all.  It is a blanket conversation about all Early Intervention programs.

Now.  Let me start out by saying that I think Early Intervention therapies are stellar.  I believe that they prevent a lot of frustration and more involved therapies in the future.  I furthermore believe that in many cases, helping kids to cope with their unique challenges before they are crippling is imperative.  This is especially the case with social, sensory, and communication challenges and particularly for kids on the spectrum. 

I had Elise involved with every early intervention program I could from the time she was 1-2 months.  You see, as a teacher, I read nothing but good things about the programs and was an enthusiastic believer in "The Einstein Syndrome".  (The theory that if you assumed that your child was a genius, and treated them with high expectations and offered stimulation, they would rise to the expectations.)  Since then, I have realized that positive expectations are indeed important, but there are many, many factors that combine to explain every child's personal development levels.

The first problem with Early Intervention is that many parents go into it believing that if they don't miss a therapy appointment, their child will be "fixed" and that all of their struggles with be eliminated if the parent is Doing All The Right Things.  This is not a real formula.  There are so very many factors that go into your child's development, that you cannot possibly guarantee anything based on regular therapy attendance.  It's just ridiculous.

The second problem is that you can forget to play and allow memories to be made.  If you think that regular therapy attendance is the official Key to your child's adult potential, then taking off a day for emotional well-being is simply not an option.  And God forbid you take a summer off and play in the grass and the pool.  And do you know how exhausted that makes you?  Much less your child?  Much less your child's siblings?  Toys are just for playing sometimes, not always "neurological stimulation".

The third problem is that they are only made to mediate problems.  They cannot "fix" everything.  They cannot combat physiology.  They cannot combat medical problems.  They cannot entirely rewire the brain.  They only promise to offer strategies to make things easier in the world not made for them.

The fourth problem, and the most important, as I see it, is that we are trying to jam a child into a mold.  If you are paying attention only to the first and second issues I put out, then I think you may have missed the point of the therapies that your kid qualifies for.  The therapies are tools to reduce distress and anxiety and give them the ability to communicate their feelings and ideas with the world.  If you are trying to "fix" your child so that they can look, act, and sound like everybody else, then you will miss out on the best present your child can give the world.  A fresh perspective.  Dyslexics, kids on the wide spectrum, kids with ADHD, kids with Down Syndrome, gifted kids, kids with learning disabilities, kids with physical disabilities, they ALL have a unique view of the world....therapies are only the manner to give them freedom and a voice.  That's all.  Stop trying to squash their voice into a neat box, their view can offer more than you ever comprehended.  Accept and enjoy it.

And if you have to take the summer off from therapies to reset and hear that voice? 

Do it.

Monday, June 16, 2014

Summertime and the Living Ain't So Easy

I have friends who are mad at me right now.  I don't think I've called anybody back for anything since we got out for the summer.

It's summer and I am still running around like my head has been cut off.  We have wound up with no food in the pantry twice.  I have had my mother bring me toilet paper and I have bought criminally over-priced toilet paper and milk from the gas stations and quick stops.

Partly because Gabriel is working and cannot drive, and partly because Elise and summer don't get along...

Elise does not play.  When she thinks she does it usually involves a pen taken to her arms and legs...or full on destruction.

She misses her friends.  She misses the routine.  She hates getting in the car to take/pick up her brother.  She hates shopping.

Right now, every time I say no to anything, she starts screaming that she's "gonna tell Daddy"...and then she weeps on the floor...  Sometimes, this goes the other way around.

I have been doing battle with summer, and shipped Elise and Amelia to grandparents for some alone time for themselves....and I have been hunting down ants and millipedes (we've had an infestation)...and cooking for Willow as it appears that she is allergic to dog food.  Yes.  I really said that...and then just running around doing errands...I guess...I don't feel like I ever stop, and yet I don't have anything good to show for it...I do a lot of picking up after Elise...

I had planned to go to my parents' pool and my friends' down the road, but I've also been fighting headaches/migraines and the rain keeps promising to come.....

We hope to pack up and just GO somewhere for a vacation...at some point this summer...as Ethan can't not work unless he literally can't...and I am 100% sure that this is something we all need...so fingers crossed...

Also, some pretend school will be nice...and summer review won't hurt anyone....

Thursday, May 1, 2014

How you fit in your pants.

When Elise was little, she wore jammies and the most adorable bubble onsies.  I had to put socks on over her jammies, to keep her feet in the footies, because her trunk was pretty long, compared to her short little legs.  When it got cold, she wore yoga pants, with the tops turned down or capris.  It really wasn't too tricky.  I had to sew in her waist, cuff her pants, and tweak some of her stuff. 

I started learning how to tailor very low grade about 2 years ago.  Real tailors would probably be horrified.  I turned clothes inside out, and safety pinned the stuff that needed to go.  Then, VROOM, with my cheapie beloved sewing machine.  The folks who read the labels and bought blind in Goodwill have probably cursed me to multiple generations by now.

I gave up on buttons and snaps about a year and a half ago, because she simply HAD to learn to potty alone.  For two reasons, 1)  she needs to learn to independence and 2)  the more independent she is, the safer she'll be.  I can't help but think that the percentage of people with special needs who are sexually assaulted, would drop a bit, if they can take care of their own toileting.  Alone.

People with Down Syndrome are built a little different than typical folks.  They have different proportions than those that the clothing industry are producing for.  If Elise was more of a dress and tights kind of girls, this would not really be an issue.  But if you want slacks or jeans or shorts?  Well.  Lets just say things get difficult pretty early in. 

As I was whining about this, Ethan told me that I should start designing clothing for people with Downs.  About 6 years ago.  And again, 4 years ago.  And yeah...so on.

But a superb grandma beat me to the punch.  Karen Bowersox.  She started a really excellent company called Downs Designs.  She has made several designs and cuts and styles in expanding sizes...adults, kids, youth, and teen.  She's making jeans, shirts, and capris.  And recently, she has added a new line of jeans, NBZ Jeans, for men that are soft and stretchy with no fasteners.  Personally I think this is brilliant for people with autism, other sensory issues, and many other physical disabilities.  They can look more mainstream, without resorting to sweatpants, etc.  And again, can I emphasize the more independent a person is and appears to be can protect them from predators?

Downs Designs has above and away the most stellar PERSONAL customer services.  Karen, herself chatted with me after hours about sizing questions.  She employs Skype to help with sizing and fit support.  Really, above and beyond any company I have ever dealt with.

Sadly, even though I placed an obscenely massive order of different cuts and sizes, nothing fit Elise right.  So. I'm back to square one.

As far as jeans, I have gone to jeggings exclusively, the wider the elastic at the top, the more secure they are, and the less I get *ahem* plummers' issues.  Shorts have gotten exponentially more difficult.

Today, I wandered into a parallel universe on a whim.

Maternity pants wander between scary huge belly panels and wide elastic bands.  I have contemplated getting maternity pants, and putting my own waistbands on them, as they are already cut under the belly, with a very short rise.  (And she will never tuck in a shirt because it sends her over the edge more quickly than tights or bunchy socks.)Today I bought a pair of shorts with the wide elastic band, which was all silky soft.  And would you believe those bad boys fit her like a dream??  They stayed up, because the elastic helps hold them in place.  They didn't make her lose her mind, because the band is silky and doesn't bunch, wrinkle, or cut.  The bottom part is nice and stretchy and superbly flattering.  And NO fasteners!!!  She is cute and perfectly independent.

(please excuse the "dressing room" mess!)

Can I get a whoop, whoop??

In related news, she has managed to get her shoes and socks on alone since Tuesday.  She is cruising for awesome this week!!




Monday, April 21, 2014

The Value of Stories

Elise has a lot of tendencies that spectrum kids have, one is that everything is taken literally. 

It can frustrating and funny.

It is very difficult when you are talking about things in a more spiritual realm.  It is particularly difficult if you want to discuss religious aspects of life.  Those of us who believe that the religious realm is fact, come up on an very abrupt wall of inability to comprehend. 

You know how there are no nebulous theories to a 2-3 year old?  Well, when you are stuck there mentally for longer than others, its hard to figure out how to explain it so it makes sense.

I have always been a firm believer of:  "If you can't explain it simply, you don't understand it well enough."  ~ Albert Einstein

With the kids, and Elise, up to a point, I don't think you really need much more than "Jesus loves you."  But the longer life went on, and she didn't really progress past the toddler comprehension, the more it laid heavy on my heart, that there had to be a way to explain the Easter and Christmas gift of Jesus in a way that she could understand it. 

Jesus himself, was a big proponent of simple stories that made huge truths more comprehensible.  In Christian circles, there is a lot of throwing around of parables, and using them primarily with kids.  There are sappy and annoying definitions of what parables are...they have always irritated me and I refuse to even quote them here, because I am still of the mind that if you can squash phenomenal theology into a off-the-cuff meme that makes you sound condescending, then you've also managed to destroy it for yourself.

ANYWAY, as I said, Jesus often took real life situations that everyone can relate to, and tied it to a truth of life.  In his simplifications, it wasn't offensive, and no matter if you believe in Jesus/the Bible, you can't fault the honesty and wisdom in them.  Which is why the default on Jesus is "Yep, he's a great teacher."

SO.  He didn't give me a parable in the Bible for his death and resurrection.  And neither did my good buddy, Paul...who also was a fan of stories that explained huge truths... 

BUT C.S. Lewis did.  In the series of Narnia, we have beautiful stories that may or may not have been meant to explain bigger truths.  They are deliciously written, and regardless of your theological leanings, I highly recommend you grab them, and give them a whirl.  And if you aren't a reader, Disney has managed (for once!) to recognize a story that didn't need any dabbling...and the Chronicles of Narnia movies are stellar.


 

But, Elise is completely taken with Aslan, and all the characters.  She is completely sucked in and enchanted with the story.  She understands it on a very organic level, and she loves it and feels it all deeply.  And, Folks, she can discuss it on a level that she cannot vocalize Jesus on.

And so, we have a tradition of watching at least the first Chronicles of Narnia movie on Easter weekend.  And we will have shocked gasps about the story of Jesus, "Just like Aslan!!", periodically.  And the books are even fuller of "Muchier Muchness"...and I, too, have taken to feeling the gift of Easter on a more organic and less theologically structured manner...and the Muchness of Jesus has struck me more and more deeply every year.


 
 
And, I wrap up with the same offer and I put out on the blog's Facebook page:  "Jesus used parables to explain The Important Stuff, take a page out of his book. Figuratively and literally.

Lots of love from us. Please don't hesitate to message me if you want support or want to ask any questions about Jesus, Aslan, or Easter!!"  Emails and or messages are more than welcome.
 
 
"It isn't Narnia, you know," sobbed Lucy. "It's you. We shan't meet you there. And how can we live, never meeting you?"
"But you shall meet me, dear one," said Aslan.
"Are -are you there too, Sir?" said Edmund.
"I am," said Aslan. "But there I have another name. You must learn to know me by that name. This was the very reason why you were brought to Narnia, that by knowing me here for a little, you may know me better there."
C.S. Lewis
 
Happy Easter! 
 
Here's my gal yesterday, enjoying a quiet moment with her brother!