Square pegs and round holes

For those of you who know me, you're more than aware of the fact that math is not my forte.  I believe this is part of the reason my heart is with teaching at the youngest age possible.  Skills like identification, sorting, grouping, classifying and counting are definitely my speed....just ask Betty from the GREs.  Who is Betty you ask?  Betty is the bane of my very existence and the woman who stood between me and my Quantatative Scores of the GREs.  Betty isn't real, ya know.  She's the subject of a word problem that caused major distress for me (and my poor husband) over the course of many nights.  Well, okay.  It's been two years, and Betty clearly still irritates me.  You see, math isn't where I excel.  In fact, I don't even know how I made it through any of my math classes in high school or college because I struggle that much with anything other than basic mathematic concepts.  Math creates stress, frustration, anxiety and down-right anger at times.  No matter how hard I try, I just cannot do it on an advanced level even though I should be able to based on my IQ.  Quite frankly, I'd rather stick a hot fork in my eye than work on an algebraic equation or a word problem about some lady named Betty.  Give me a laptop and a thought in my head, though...  Well now you're singing my song, and I can't be stopped.   Here's about the extent of my mathematical abilities:  Math + Me = Square peg ---> round hole.  How's that for an equation??  Whew...my head hurts.  I need a break.  


Simply put, square pegs do not fit into round holes no matter how hard you try to make them.  I know this first hand and so does Zachary.  Zachary is a walking, talking square peg desperately trying to fit in a round hole we call life.  He wakes up with a headache and needs lots of breaks.  Everyday.  Unfortunately, not everybody who comes into contact with Zachary recognizes that because based on his IQ, he, too, should be able to accomplish things that he simply cannot without a lot of support.  When I stress-out about math, people tell me I can really do it but have a mental block. I'm a fairly intelligent woman and capable of doing it, so why can't i?  It must be me, but it's not.  Just like it's not Zachary.  It's his disability.  Wouldn't life be easier for all of us if this was "just Zachary" and he didn't have a disability? 


For years, before Zachary starting a school program at Eden, we had contended with being told, yes, Zachary has special needs BUT... Zachary is capable of doing xyz, BUT Zachary is so smart,  BUT Zachary knows what he's doing, BUT Zachary just doesn't want to,  BUT Zachary,  BUT Zachary, BUT Zachary...if I had a dollar for every time I heard this about my poor kid, I would've been able to pay for private OT 1x per week in cash.  A long time ago during an IEP meeting, I heard this one time too many times and very pointedly asked Zachary's case manager, who I really do like and  happens to be a lovely woman, "If this is just a behavioral issue, then where exactly do you find being a pain-in-the-ass making you eligible for services in Code?"  True story.  I really do try to follow the mantra "advocate without emotion", but there's only so many times you can hear people tell you that your square peg is actually round.  
Yesterday, for the first time in years, I was confronted with the reality that people continue to confuse Zachary's cognitive ability and tremendous potential with what he is and is not capable of doing.  I, of course, don't know any better because I'm just his mother.  How dare I.  I mean, really.  What have I been thinking all of these years?  Zachary walks, talks, can play(ish), laughs, cries, understands body language, has empathy and does all sorts of "typical" stuff; surely he can deal with demands and accept directions in a stressful situation from an unfamiliar person with ease.  He just doesn't "want to".  For the first time in years, I was presented with needing to protect my square peg from the big bad round hole of life.  I'm back to having a headache and needing a break.  Ugh.


Zachary had a really strong start at Circus Place, but what started out as a great experience ended on a really bad note because somebody, admittedly, tried to fit Zachary's square peg into their round hole of structure and demands.  They made the fatal mistake that many have made before them and have failed miserably as a result.  Mr. Craig made the fatal mistake of having completely unrealistic expectations of Zachary because "....he's capable."  Truly, I haven't contended with this since Zachary has been at Eden, so I was nothing short of floored when I had someone pointedly tell me that if we continued to do what we were doing as in working in small increments, giving environmental control and allowing for breaks, Zachary would never reach his fullest potential because "he can."  Floored.  I'd be lying if I told you I didn't want to come across the waiting room and take somebody down.  Maybe that's the PMS talking, but I was taken back never-the-less.  My momma warrior began to rise from within. "Three minutes" is unrealistic Mr. Craig incredulously asks as I explain my son's needs?  My son will never move past where he's at if we don't push him past working in small increments and frequent breaks he "explains" to ME???!!!  Yeah, I don't think so...  After explaining to Mr. Craig, with whom I am also very fond of,  that, yes, Zachary is extremely capable, and yes, Zachary is extremely bright, and, yes, Zachary "can", the short answer to this situation gone bad was a resounding NO when it comes to Zachary being able to manage the completely unrealistic expectations he set for Zachary.  Square pegs don't fit into round holes.  


On the flip-side, I have nothing but absolute respect and true appreciation for Circus Places' mantra of acceptance, tolerance and all kids deserving a chance.  I really do.  They want this to be a great place for our kids...ALL kids... to play and learn, and it is!  It's a wonderful program, and we couldn't be happier to have found it!  Zachary loves it, too, which is an added plus and half the battle.  Having said that, there needs to be reciprocity in terms of respect to make any relationship work.  It's so important that teachers/providers working with a child with special needs show this respect to their parents.  You can learn so much about  a student/child if you just listen to their parents and move past your preconceived notions of what you think a child should be able to do and capitalize on what they actually can do as they are two very different things.  


The PS to this situation gone bad is that Zachary still WANTS to go back despite the bad experience.  If this doesn't show growth on his part, and the fact that he loves this place I don't know what will.  There's almost no margin for error with Zachary in these types of situations, so a bad experience typically equates to "the first and last experience."  Although Mr. Craig and I did not see eye to eye at the on-set yesterday, he is incredibly motivated to help Zachary and WANTS to learn HOW to effectively work with him.  YES!  After hearing my perspective, he was incredibly willing to CHANGE his approach and make it work for Zachary anyway he can.  YES!  He's going to work 1:1 with Zachary on Sunday because there's "no time limit" and he wants to take his time.  YES, Mr. Craig!  You're already half way there!  :)   Mr. Craig is certainly in a little over his head with a kid as unique as Zachary.  I can pretty much guarantee there hasn't been another child like Zachary walk into Circus Place.  However, Mr. Craig's heart is in the right place, and he is a genuine person which will only add to to his success.  Time, patience and desire. 

 Kristy's Lesson of the Day:  Zachary is the quintessential square peg.  Working with him as you would with any other child is no different than trying to force a square peg into a round hole...the peg will slowly splinter around the edges until it complete breaks apart from too much pressure.  Picking up the splintered the pieces is never fun. 


(I think I may steal this analogy from myself and add it to the profile I've created for Zachary to give to people who are new to him.  BTW, creating a personal profile for Zachary is something I learned from a parent of one of my students a long time ago.  Karma.... Hmmmm. I think I've already blogged about that!)  Zach and Twinkie: 4 Paws of Luv

50 Cent-s doesn't help our cause

July 8, 2012


Dear 50 Cent, 

Autism.  It's everywhere.  It's not going anywhere any time soon, and everyone is impacted by the affects of an Autism Spectrum Disorder in some way.  Too many families are impacted by this life-long disorder in which there is currently no cure.  Autism.  It's everywhere. 

The statistics of children diagnosed with an Autism Spectrum Disorder are staggering; the most recent statistic from the Center for Disease Control (CDC) is 1:88 children.  In New Jersey, specifically, the statics are even more significant.  1:49 children are affect by an Autism Spectrum Disorder.  Even more startling than this, is that in New Jersey, 1:29 boys are affected as opposed to the 1:172 girls.   There's been a 78% total increase in prevalence comparing the 2012 study that looked at the data from children who were 8 years old in 2008 to the 2007 study that looked at the data from children who were 8 years old in 2002 data.  That's a 78% increase in just ten years.  Crazy.  These statistics were sited from Autism NJ.

Children with an Autism Spectrum Disorder process the world around them in a most unique way and are often unable to appropriately manage the demands of their environment and communicate their needs.  Public schools are overwhelmed and unprepared to manage so many children with behavioral and performance needs as unique as those of a child with Autism.  Private, Out-of-District school programs like Eden Autism Services Eden Autism Services (NJ) have been inundated with requests for educational services and subsequently have waiting lists.  Parents are at a loss as how to best help their children at home, in school and while out in the community.  Many insurance companies now pay for related services to support children with Autism, but there is a significant shortage of highly-trained professionals to provide these services.   Autism.  It's everywhere. 

So what do we do?  We pray.  We pray that our children grow up in a world of acceptance and tolerance instead of ignorance.  We pray that we fight the fight hard enough to help our children succeed in this world and not fail miserably as parents and advocates.  We pray that we wake up with the unwaivering level of  determination that we need to help our children move forward instead of desperately longing for "normal"...whatever that is.  We pray that we can manage the demands of Autism, our marriage, our other children, family and friends instead of having a break-down. We pray that we never have to watch our children struggle another day of their life....

  WE PRAY FOR A CURE!! 

Zachary; 9 years-old; Autism

This, 50 Cent, is what Autism "looks" like.  

This, 50 Cent, IS Autism.  

Sincerely,

Kristy, Zachary's mom

Social Bridges

Twinkie is a people magnet.  No matter where we go, people flock to her and show her the love.  Since she's not one to be rude, she always extends a welcoming paw and happily accepts all compliments, treats, pats to the head and back rubs!  Really, though...how could you not love that cute little face?  Well I could say, for instance, when she's eating Allison's underwear, grabbing mouthfuls of Zachary's LEGOs or playing "You can't catch me." in the backyard when the heat index is 101 degrees, but that's an entirely different post.  

Behavior Disruption/"OVER": this is midway thru a
minor tantrum over wanting his own laptop! "Over"
means to step over and lay down on Zach's lap/legs.
Twinkie provides Zachary w/deep pressure and the
ability to run his fingers/hands thru her fur.
This is always effective and calming to Zachary.

Anyway, I digress. Social Bridges.  Yes.  Twinkie is trained to do many things to help Zachary.  On command, she can use various means of behavior disruption to distract Zachary, interrupt a tantrum and/or show him emotional support.  She is trained in tracking which is scent-specific search and rescue should Zachary ever get lost.  Twinkie is also certified for public access; she can work with Zachary and support him while out in the community.  When I type this stuff out and re-read it, I am still amazed that one, beautiful and fluffy little pup can do ALL OF THIS to help my guy with seemingly little effort.  With that being said, another gift Twinkie gives to Zachary is the "tools" he needs to build social bridges, and she does this with no effort what-so-ever.  I mean, really.  When you're as cute as Twinkie is and you know it, it's really not hard to work the floor and garner some attention.     

I don't think we've been to a single place in Ohio or back at home where people both big and small have not stopped us or at least really wanted to.  (On a side note, everyone we've encountered that's wanted to interact with Twinkie has been incredibly respectful and asked before they approached her.)  Anyway, be it the mall, Applebee's, Staples, Shoprite, Circus Place, Hallmark Store, Regal Cinemas...where ever it may be...people want to interact with Twinkie.  So....if they're interacting with Twinkie in some way, they're interacting with Zachary in some way, and he has to interact with them in some way.  Social bridges.  I should mention the one little incident at the mall when a little girl came running towards Twinkie wanting to pat her and Zachary yelled, "That's MY dog, little girl!"  Lack of impulse control. Hence the reason for the service dog; I'm sure I can create a social story to work through that.  LOL  Sorry. Another digression.  It's late.... Helping a child who desperately wants to socially interact with his peers but really doesn't always know how to since they move, speak and exist in a much faster paced world takes time and a lot of it.  Social bridges take time to build, but Twinkie definitely has the "tools" Zachary needs to help him slowly build his own bridges.  :)  For more information about 4 Paws for Ability, please click on this link:  4 Paws for Ability: taking the "dis" out of disABILITY

Twinkie's ID tag on her kennel at
4 Paws for Ability

Social Bridges.  That's where we're still at tonight, right?  Well, not only is Twinkie going to help Zachary build his own social bridges, she's going to help me, too!  I must say, this was not the angle I was looking at when we first got Twinkie.  However, I've gotten sooooooo many words of support and  warm fuzzies from you all, that I thought I'd take the leap (at the suggestion of several very kind people)  and see how many other families/children I could reach and possibly help by sharing Zachary and Twinkie's story of love and life in general.  God knows it isn't always easy, but it's all real.  Everyone has a story...ours is just a little different!  


Zach and Twinkie would love for you to keep following their blog. They now have a new Facebook page. How high-tech of them...these 4 Paws dogs can do anything.  :)    You can find them at this link.  Zach and Twinkie: 4 Paws of Luv  Come on by to visit them and please LIKE their page so you can stay in touch with them.  The more people who LIKE them and share their page with their friends, the more people they can reach!  I've had over 170 people look at one of the pictures I posted on their page this afternoon.  Imagine how many people they could reach with your help!


You can also find Zach and Twinkie on Twitter.  (This just keeps getting funnier by the minute, huh??!!)  You can find them at this link! zachandtwinkie; @4paws4zach  
Their username is:  @4paws4zach under the profile:   zachandtwinkie.  Creative, I know.  If you're on Twitter, find them and become one of their followers.  There's a gazillion people out there on Twitter, and they hope they can help another kid the way that people have helped Zachary along the way! 


Social Bridges.  Who knew how many bridges Twinkie would help build once she got back to NJ?  (Now if I could just train her with the "Keurig" command, we'd be in stellar shape in the morning.)  A Bridge Over Troubled Water by Simon and Garfunkel

Transition

Yesterday (Monday) was a really big day for Zachary; he started a new school program at Eden called Transition.   It seems that Zachary has had a lot of "big days" lately!  :)  There's been the most obvious, getting Twinkie from 4 Paws, then graduating from the Early Childhood Program, beginning an adaptive circus arts program and moving up to the Transition Program at Eden this week.  Whew...for the kid who needs time to adjust to changes in his world and move from one thing to another, Zachary is experiencing quite a bit of transition pretty quickly, and we've all lived to tell the story!  

So, first and forth most...CONGRATULATIONS, Zachary!!  You've worked very hard over the past three years, and Mommy and Daddy are superity-duperdity proud of you!!!  You're off to bigger and better things at school!  Go get 'em, buddy!!  xoxo  Eden is a twelve month school program for kids with Autism, and ESY (Extended School Year) began yesterday as did this new phase of Zachary's life.  When he got off the bus yesterday, he walked up to his new classroom on the second floor. This, my friends, is a very big deal since the second floor is where the  "big kids" go.  :)   While Zachary needed the ultra-intense functional support of the Early Childhood Program for the past three years, it's now time for him to move up and work with the big kids.  We've come a long way, baby!  Change is good and is, of course, a reality of life, but it can be difficult for a kid like Zachary who is the product of his immediate environment, so we're extra happy about how smoothly the transition to Transition has gone over the past few months.  The Transition Program at Eden is set-up and run like a traditional self-contained program with the exception of the little fact that the kids have A LOT more behavioral support than you'd ever find in a public school setting....as in they have several BCBA's (Board Certified Behavioral Analyst) on staff .  Eden's behavioral program is outstanding, and Zachary has lived to tell the story!  LOL  He's not always happy about it, but he is better for it none-the-less.  :)   For more information about Eden, click on this link:  Eden Autism Services

This afternoon (Tuesday) Zachary also experienced another type of transition.  He attended his first after school activity!  It's the Adaptive Circus Immersion class at The Circus Place.  Circus Arts and Education for ALL kids!!!  (click here to check it out!)  The reason this is a transitional type of activity for him is that this is the first time in years, well, okay maybe in ever, that Zachary will have to move from being at school all day, coming home, quickly leaving then participating in a 60 minute semi-structured after school activity.  This probably doesn't seem like too big a deal since most kids do this effortlessly all weeklong when they're involved in sports, scouts and such.   For Zachary, though, this has always been a major challenge mainly because we've never been able to find a unique enough program to meet his unique enough needs which has always been a recipe for disaster.  A child psychologist we were seeing years ago told us, "Boredom for a kid like Zachary is a nightmare."  No truer words have ever been spoken.  Having said that, The Circus Place is indeed a unique place to play and learn.   Zachary will learn how to juggle, spin plates, ride a unicycle (hopefully), walk on a tightrope and do aerial tricks!  Yup...I'm TOTALLY serious.  This is the coolest place ever!  The Circus Place isn't so much about athletic prowess or being physically coordinated more so than it is about acceptance and opportunities for all kids...even kids like Zachary.  Sure, this type of program will most definitely help Zachary with his sensory needs, social skills and processing abilities, but it's tons of fun so he won't even know it's happening which is half the battle with my guy.  

Since The Circus Place is such a unique program, Zachary LOVED it while he was there on Saturday to work with Mr. Craig and he's grown soooooooo much functionally, we were actually pretty optimistic that this transition wouldn't be too terrible... and it wasn't!!  Zachary really enjoyed his class and participated the whole time....well mostly the whole time.  Zachary gets hot very quickly so he did try to bail briefly three times.  I should note that although escape behaviors is definitely Zachary's M.O., this was over the course of 50 minutes, so Zachary was more than actively engaged and happily participated just about the entire time.  (Thank God for small miracles!)   Mr. Craig so beautifully worked with Zachary and re-engaged him very quickly.  Zachary worked on eye-hand coordination by balancing gigantic feathers on his palm, throwng feathers through a hoop like a dart and using Mr. Craig's juggle "helper".  Hooray for Zachary!!  Hooray for us!!  It was so heartwarming for me to see Zachary look so happy, so relaxed and so engaged in something so typical...he's on his way to the Big Top.  :)      

It's been a big transitional week for our Miss Twinkie, too.  When you consider the fact that Zachary met Twinkie on June 5 , yesterday was the first time in nearly a month that Twinkie and Zachary had been separated.  By time Zachary left for school yesterday, he and Twinkie had established an incredibly strong bond in our home setting which is nothing short of absolutely, positively awesome!!!! They did everything together at home for 11 days straight (not to mention the 12 days of 1:1 time at 4 Paws), and they were inseparable.  Yesterday, though, Zachary was gone and did not come back.  Zachary was gone, but Twinkie could not go find him this time.  Zachary was gone, and Twinkie was sad.  She laid around and was mopey all day.  Poor girl.  She wandered around the house as she always does when she can't find her boy.  I knew she wouldn't cheer up until Zachary came home....and that she did!  When Twinkie heard the horn blow on the bus, she was so excited!  Zachary came into the house a few paces ahead of us, so she lost sight of him.  She ran back to me in the living room looking confused...."I know he's here!!", I'm sure she says to herself.  "Where's Zachary?!", I excitedly ask, and she's super excited again!  I brought a very happy, very excited Twinkie to the couch where Zachary was sitting, and she was now sitting, literally, on top of him a half-a-second later.  :)  She laid on his lap and didn't move for a few minutes.  She took in all of the love, hugs and kisses Zachary had for her.   Her boy was back and her world was a better place.  Now Twinkie knows exactly how Zachary feels inside every time he sees her!