A smile isn't always a smile

Being a parent is by far the most difficult job I've ever had.  Being a parent to a child with special needs is that much more difficult and emotionally draining.  People often ask how I "do it"....raise a child like Zachary, that is.  The short answer is there are some days I'm not quite sure; I just do.  The real answer is that the sheer will to protect my child and be his voice when he cannot speak for himself and help him move forward when he is unable to take these steps himself always trumps my desire to lay on the floor and cry.  It always will.  And, I can promise you, there are days I'd rather lay on the floor and cry.  There are more days like this than you probably even realize because a smile isn't always a smile. 

There are days you see me and I'm smiling, but happiness is the farthest thing from my true feelings.  There are days that my smile and laughter are nothing more than a convincing mask for sadness and fear.   For better or worse, I've become a master at walking out my door with a smile on my face although my heart was breaking into a million pieces a second before.  I think many parents to children with special needs have mastered this skill.  Very rarely do I allow anyone other than Joe into that part of my reality just because I'd much rather laugh than cry.  Unfortunately, life doesn't amount to one big joke, so, like it or not, there are times I do feel all sorts of negative emotions.  No worries.  I'm not emotionally stunted or in denial.  I do breakdown in the comfort of my own home with the support of my husband just like I did tonight.  I break down, talk it out and cry when I need to because if I were to not do this, I'd literally have a breakdown, and who really has time for that??!!  Well, tonight an overwhelming level of sadness struck as we were leaving the Promenade Shoppes and tears started streaming down my face while I stood next to the truck with my face buried in Joe's chest after the kids were buckled in.  You know I had to feel truly overwhelmed  because I rarely break down in public.  Almost never.  And, if I feel as if I'm going to, I've become quite adept at stopping myself.  I do it more than you even realize.  In fact, I've done it right in front of you.  I'm that good.  A smile isn't always a smile. 

We had so much fun at the fountains tonight.  It's very relaxing, and Zachary and Allison love it there!  It's especially fun around dinner time when it's not nearly as hot and crowded.  After the fountains we either go to Red Robin for lunch/dinner or Millie Moo's for some ice cream.  Tonight, we had dinner at home so it was Millie Moo's.   As we sat on the bench eating ice cream, Zachary noticed a lot of older kids walking around.  He loves to people watch and talk about what he sees.  He asked me if he could come to Millie Moo's with his friends one day.  I told him that he sure could once he was a little older, but the reality of this statement is that Zachary doesn't have any friends to come to Millie Moo's with.  At that moment, the truth about Zachary's reality shattered my heart into a million pieces; I felt like I had been punched in the stomach.  Sure, he's got kids in his life that he considers his friends and who are very kind to him and like him, but it's an entirely different type of "friendship".  Zachary so badly wants friends and wants to do "normal" things.  At the same time, he definitely recognizes on some level that he's not like other kids and can't keep up with them or play like them.  Zachary understands what friends are, but he doesn't quite know how to manage it in the long term so he resorts to what he does know and what he can do which is not what other children are generally interested in.   I can't even imaging how frustrating and confusing this must be for him.  I do know, however, how painful it is for me to witness. 

Joe understands my sadness and fear because he experiences it, too.  We are the parents of a child with special needs, and it's not something you can truly understand unless you're living that reality.  I'd be lost without Joe because no one understands me the way he does.  No one really can.  People will tell me in one way or another that they understand, but they don't.  It's not because they don't want to or don't genuinely care; it's because they can't.  It's honestly nobody's fault.  There's just no way they can.  I don't get mad when people tell me this because I know it's well meaning, and I always appreciate the support.  Raising a child with special needs can be very isolating and lonely, though.  It's very easy to get lost in the shuffle of the normal world the people around you live in.  It's also very easy for the people around you to lose sight of your life because they're not contending with issues nearly as significant as you are.  They may think they are, but they're not.  Not even close.  My life is about perspective.   From my perspective, I can promise you that whatever you perceive as the end of the world as you know it in your normal life probably is not.  It's likely just a minor irritant.  Being told, however, that your child has a life-long disability in which there is no cure...that's the end of the world as you know it.  Sorry.  Just being honest.  It's where I'm at tonight.  


The next time you see me smiling,  please take a moment to step out of your world and consider where I'm at and what I'm going through in my world.  I have no choice but to do this for you as 99.9% of the people I know live in that normal world, so reach out and please remember that sometimes a smile isn't always a smile. 

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