Wednesday, December 19, 2012

4 Paws of Luv :)

Twinkie has shared lots and lots of luv since she's been home with Zachary.  Here's a link to the photo book I've created for him.  :)  


Lots of Luv from these 4 Paws!!

Sunday, October 21, 2012

What's the WORD on the street?


So, the morning didn't start off quite the way Zachary had hoped.  We went to Party City to buy Halloween costumes, and Zachary was banking on the fact that Lloyd the Green Lego Ninjago guy would be there.  I forewarned him that this may not go as he's planned, but sometimes these little lessons in life happen and, honestly, need to.  It's part of life in the real world...the world that Zachary needs to live in whether he likes it or not.  These little lessons in life are not always easy, but they happen never-the-less.  REALITY

As expected, Lloyd was not at Party City.  DISAPPOINTMENT

Although Zachary was a little cranked up about Lloyd, he was able to hold it together, and he very appropriately chose another costume a few minutes later....the Gangster with the Tommy Gun and cigar.  As his luck, and mine, would have it, there seems to have been a run on boy Gangsters this year in Western NJ, and they were out of stock!! UGGHH!!  Definitely a little more cranked up this time around, Zachary STILL held it together albeit with a lot more reminders/prompting about appropriate voice volume and tone. (Lots of momentarily closing of the eyes and deep breaths on my end, too!)  FRUSTRATION 


As I hugged Zachary and tried to explain the "solution" to our problem, he started to cry a little since he knew he wasn't going to leave Party City with his costume.  Then he looked down and asked Twinkie, "What are we gonna do?"  He sat on the ground and gave Twinkie a big hug which she happily accepted.  Once I put Twinkie in a "down", Zachary wanted to lay on her for comfort...and did....right in the middle of the floor at Party City.  He was even asking Twinkie to do "over" which is something he likes her to do at home when the going gets rough for him.  SUPPORT


After you've successfully negotiated a seemingly benign event such as buying a Halloween costume with your child who did not yell and cry in a big way because they've just used every bit of self-control, impulse control and everything else you've taught them to do in this situation, you honestly could not care any less what people think of your nine year-old laying on the floor with their service dog for a couple of minutes.  It's what he needed, and it's exactly what Twinkie's roll in Zachary's life is all about.  THANKFUL

After just a couple of minutes of quiet time with Twinkie, Zachary was a-okay and ready to move on!   I was able to order his costume in-store from their on-line kiosk, and we were ready to go the pumpkin patch we've taken the kids to since they were babies!  FAMILY  


Tuesday, September 25, 2012

We all scream for ICE CREAM!

I scream, you scream!  We
all scream for ice cream!

What better way to celebrate the new school year than with ice cream sundaes and friends??  This goes for the kids AND parents!!  We have a pretty awesome PTO, and they host an ice cream social each September which includes vanilla ice cream and lots of toppings.  It's a great time for the kids to come to school to socialize and even nicer for the parents because it's FREE!  You really can't go wrong with free ice cream, ya know??  

Zachary and Twinkie attended this event tonight at our local elementary school, and both of them did a great job!  Twinkie was service-dog extraordinaire and managed the mayhem beautifully.  She need some minor corrections to heel/sit as we waited in line and to walk correctly in a heel.  Otherwise, she soaked it all in and graciously accepted the happy children and adults patting her all the while telling her how adorable she was.  I am always amazed about how respectful our community has been of Twinkie being a working service-dog and asking if it's okay for them to interact with her.   Kudos!  She eventually fell asleep under the table; it's just another day on the job for her.  :)  

These types of events are usually very overwhelming for Zachary, but he was so willing to get up and go once he confirmed that Twinkie could come with him.  He really is so much more eager to leave the house and go places just knowing Twinkie is there for him.  Although Zachary loves to go out and about, prior to getting Twinkie, he was becoming increasingly resistant to leaving the house and even going places he was familiar with.  In kind, this was becoming increasingly frustrating and concerning to Joe and I.  It's been so refreshing to see Zachary show the desire to go out into the big, bad world even though it's not easy for him.   

Twinkie is definitely a calming force in the storm of anxiety that Zachary struggles with everyday.  Anxiety Disorder is a hidden disability for both children and adults.  In fact, Anxiety Disorder is more pervasive than any other issue that Zachary has to manage....yes, even Autism.  Anxiety fuels it all at the end of the day.  Sure, he's on the Autistic Spectrum and is definitely redefining what exactly that means, but these behaviors and the intensity of them ebb and flow with his ability to manage the level of anxiety in his environment; this is one of the things that makes Zachary so complex.   

Anxiety Disorder so closely mimics ADHD, that in order to be given a clinical diagnosis of ADHD, psychiatric disorders such as Anxiety Disorder need to be ruled out first.  Having said that, approximately 25% of all children with ADHD also have an Anxiety Disorder.  It seems as if Zachary couldn't dodge that bullet either.  And, when you look as "normal" as Zachary does, it's hard for people to really believe that the escape behaviors he may engage in like yelling, abruptly getting up to leave and non-compliance are actually the result of a disability driven by his environment as opposed to him simply misbehaving.   And, for the record, as a very bright, 9 year-old boy, Zachary does his fair share of misbehaving!! :)  Any parent of a child with special needs will tell you they high-five each other whenever they see a typical, age-appropriate behavior no matter how obnoxious it may be.  It's just how we all roll.

Click on this link to read more about ADHD/Anxiety Disorders.  
NYU Child Study Center

We ALWAYS arrive a couple minutes early or exactly on time to events like this because it gives Zach time to slowly acclimate to the rush of sensory stimulation that would naturally occur where there's a lot of happy kids at a big ol' ice cream party.  Zach did need a few reminders to appropriately use acceptable "escape" phrases, and as always, our friends are beyond supportive and accepting.  They get Zachary, are never offended by him and love him for who he is....we will always be thankful for that type of support!  :)  

It was also pretty awesome to see how well received Twinkie was by the building principal and faculty that were there serving ice cream.  We walked in, and no one gave Zachary or Twinkie a second look.  They smiled in a "Twinkie is so cute" kind of way, and that was about it.  There were no questions, no uncomfortable looks or no weird vibes.  It was an ice cream party, Zachary was there, so was his service-dog...let's make a sundae.  

(The added bonus for me is that I was so busy chatting with friends, keeping an eye on the kids and Twinkie that I didn't even eat any ice cream.   When I consider the Weight Watchers train wreck I experienced the past couple of days, I can promise you I won't be withering away!  LOL)

All in all it was a positive, happy experience for everyone involved.  

Ice cream never tasted so good.  





Friday, September 14, 2012

A Boy and His Dog...and a Hot Cocoa


America, and service dogs, run on Dunkin', and Zachary loves their hot cocoa!  :)


This pic was taken mid-sentence as Zachary tried to convince me that it was okay for him to open a new box of Dunkin' K-cups so he could build a K-cup tower.  If nothing else, he's persistent!

Shortly after the brief go-'round about the K-cups, a group of little ballerinas walked in and squealed with delight when they saw Twinkie.  As their moms tried to stop them from running towards us, and I tried not to laugh, I asked them if they wanted to pat Twinkie.  Hello...no-brainer!  :)  They were all super-excited to give her treats, too.  (I was a rock-star if even for a moment and with someone else's kids.  Hey, beggars can't be choosers, right??) Naturally, Twinkie, without any shame, accepted the constant chatter about how pretty and soft she was....as IF she needs anymore confidence.  

This was such an amazing opportunity to raise awareness and educate the community about service dogs and the important role they play in the live's of those with disabilities...not just those who are visually or physically impaired.  These two moms and their little one's were so interested in Twinkie and what she did!  What I also loved is that these moms explained to their little ones what Twinkie did if I were answering another question and couldn't answer them myself.  They, of course, were beyond impressed with how calm and well-behaved Twinkie was.  I, frankly, nearly choked on my iced-tea when they said that and wanted to invite them over for dinner!  LOL  

Anyhoo, this was also an amazing social and language opportunity for Zachary as I had him introduce Twinkie and made sure he made eye-contact...which he did.   Sometimes  Zachary looks down or away when he's feeling anxious which very often happens in these types of social situations.  Zachary also likes to tell people Twinkie is a Golden Retriever.  :)  While the moms and and girls asked what Twinkie did to help Zachary, I directed the questions I could to him and helped with the replies as needed.  This is such an important component of appropriate social and language reciprocity because Twinkie is HIS service dog, and he should know what she does so he's able to actively participate in these inevitable conversations. 


In response to somebody's question about what Twinkie does to help him, Zachary did make the one mom tear up to his answer of "love" when I prompted him with the fill-in of "When you're sad, Twinkie gives you a lot of ____."  It was such a genuine and completely honest response.  Zachary carried such confidence in his answer, and feelings, that he looked right at her when he said it.  It made me tear up as well because this wasn't a rehearsed, rote response or part of a social story.  Love, unconditional love, is exactly what Twinkie gives him, and he knows it.  

This type of spontaneous social encounter is also what separates an Autism Assistance SD from other types of service dogs; Twinkie is a social bridge for Zachary and helps alleviate some of the stress and anxiety that he struggles with in these types of social situations.  Twinkie's mere presence brings people, both big and small, to Zachary and helps him cross the bridge of social interaction with a little more confidence and a lot less anxiety.  




Our collective job is complete for the day.

There's a reason why we're certified as a team. 




Monday, September 10, 2012

The Hands of Time

So, wow!  It's been awhile, huh??!!  I guess I've been better about keeping up with Zach and Twinkie's Facebook page than I have been a updating their blog.  Although, the info and pics I've posted on their Facebook page would most definitely amount to several blogs over the past few weeks.  With Miss Twinkie keeping me on my tippy-toes all day, everyday, updating their Facebook page has proven to be a little easier at the moment!

Zach and Twinkie hangin' at
Dunkin' while Ally's at dance.

The past 7 weeks since I've last blogged have gone by in the blink of an eye.  I can't even believe it's already September 10, and we've been home with Twinkie for just about 3 months.  It seems like we were just at 4 Paws training with her.  Time stands still for nothing, although, sometimes I wish it did so we could hold onto those precious times we don't ever want to see come to an end.....like having the 24 hour support of your trainers at 4 Paws.  I, without an ounce of shame, have tried talking Jeremy, Jennifer and Karen into coming to live with us for the next 6 to 12 months of Twinkie's puppy-hood.  I've offered to take in their families as well; being a home wrecker is so not my thing.  I've offered trips to NYC for Broadway shows and Rockefeller Center to see the magnificent Christmas tree.  They all just laughed not realizing just how serious I was.  :)   


Truthfully, there are times I wish time was standing still between June 5 and 15 while we were training at 4 Paws.  I'll always miss our 4 Paws peeps as they will forever hold a special place in our hearts, but training and getting through day-to-day life with your service dog is A LOT easier while you're there despite the fact you're drooling tired at the end of the day.   While you're training in Ohio, you're living in a completely unrealistic bubble.  Sure, you're dealing with training a brand new service dog and helping your child through the process, but it's just not reality at the end of the day.  It's definitely not easy, but it's definitely not reality.  Reality is so overrated these days...


"That's funny how you thought
you'd have time to read."
Jeremy always talks about the fact that things will indeed be different for you and you're SD when you get home.  He also reminds us many times over that it can take about one year...12 whole months...to establish the bond and level of respect you need from your child's SD and for them to completely fall into place with your child.  Jeremy also reminds us not to give up and be patient.  Ah, patience.  Between Zachary and Twinkie, my patience meter is working over-time and constantly smoking these days!  LOL  The demands of life are different at home, so you're not only contending with the constant training of your SD, BUT you're also contending with life in general.  The phone rings, you get texts, you have other children, you have a husband, you have friends, you have school and work, you have Scouts and ballet, you have laundry and dinner, you still have a child with special needs AND, now, you have service dog.  Dear Lord!!??  A service dog??!!  When the hell did that happen??!!  Oh, that's right...when time was standing still in June.   The hands of time.  In the blink of an eye...got it.  (Whew!  I scared myself there for a moment.)

Between you and I....leaving that bubble of non-reality and time being uncooperative in that it does not stand still for you makes coming home with your SD exhausting....and frustrating at times....and brings you near tears at times.   Anybody who tells you that coming home with your SD is a walk in the park and has not experienced these emotions is still living in a bubble of non-reality!  (Although, I am a fan of non-reality at times.  I do like the sound of Private Citizen Kristy.)    Jeremy and I average a call approximately every 10 days.  I meant to call him last week after Twinkie pulled an oven stuffer off of the counter and helped herself to the leftovers (Yes, for real!) and ate a book I borrowed from a friend,  but it was the first week of school and time got away from me.  I do, however, have a call into him today; I have my list of concerns and questions at the ready.  The last time we spoke, Jeremy and I agreed that I have spoken to him more and for longer lengths of time in the past couple of months than I did the entire year we had Aubrey.  Talk about the hands of time being a funny thing.  Oh, Twinkie... 


Don't get me wrong, I absolutely love Twinkie...you know I do!  Now that she's home with us, I couldn't imagine our life without her.  Zachary couldn't imagine leaving the house without her.  She's brought Zachary a sense of peace while we're out that you wouldn't necessarily see, but Joe and I know it's there.  She's a shoulder to lean on at home that he looks for when he's had a rough go at it.  I love her for all of those things and more because I have such high hopes for Twinkie and Zach as they both continue to grow, learn and mature together.   I even love every bit of Twinkie's naughtiness although I was ready to sell her to the gypsies a week ago.  LOL  For as on-the-money as she is in public, she is still a puppy, and I need to constantly remind myself of that....like when she's trying to eat one of my bra's from Victoria's Secret or Joe's Disney Visa Card.  


Our sweet girl, Aubrey.  xoxo

As I take deep breaths and navigate this first year with Twinkie,  I have to also remind myself that time truly stands still for nothing, and we could lose this precious, if not chaotic, time with her in the blink of an eye as we did with Aubrey.   



On we go...you can never turn back the hands of time.  




Monday, July 23, 2012

The sun'll come out tomorrow...and it did!

Last night was movie night, and Annie was the movie of choice.  Okay, so you got me...the only reason Annie was the movie of choice is because it was on sale at Target for $4.75.  Just being honest.  The kids were happy none-the-less because I sold this  bargin DVD as the greatest thing since gluten-free sliced bread, and they each had their own bowl of popcorn.  Life was good all around.  It's amazing the difference a week makes and the lessons you can learn from fictitious, orphaned, little red-head girls named Annie.  I've gone back several times and read my uber emotional and honest blog entry from last week; A Smile Isn't Always a Smile.  Reading it can still make me cry because the pain is very real, but the tears aren't nearly as fluid and the feelings aren't nearly as raw today as they were at that moment.  Not to mention, Annie is 100% correct...tomorrow is always a day away.  

So, last Saturday night sucked in every sense of the word.  I had to walk out my door on Sunday morning "wearing" a smile that wasn't really a smile at first, but I felt incredibly liberated as odd as that may seem.  It felt really, really good to so candidly talk about my personal reality.  It was like this invisible weight was lifted from my shoulders.  People so often see me laughing and smiling that it's hard to imagine I could be anything but happy sometimes.   We're very open and honest about Zachary and the challenges we face. This is our life.  It is what it is.  It's just not my speed to sit and complain and cry and drone on and on about how difficult and unfair life can be.  True.  Life isn't always fair.  That's life.  Sometimes, you've just gotta pull up your big-girl panties and deal.  No one ever said it was gonna be easy.  Ah, yes...that's more my speed.  :)  I'm still blown away by how many people read this blog entry and how my words resonated with them in someway.  I'm still blown away by how many other moms of kids with special needs reached out to me and thanked me for being their voice and putting their own thoughts and feelings into words.   Some even asked if they could share my blog to help people in their lives better understand their reality.  Thankfully, my tomorrow did come albeit touched with the after-shocks of raw emotion, and the sun did start to shine again this week.  Here's why: 

My little loves.  (Zach is desperately trying to
escape Uncle Michael and his camera! LOL)
I am blessed with the best husband ever and two happy children.  Joe is my rock, my true love and best-friend in the whole world.  Allison is the most compassionate seven year-old I know;  her understanding and acceptance of personal differences is far beyond her young years.  Zachary is a little warrior unto himself; he has given us the gift of perspective and a love for life we would not have otherwise know.  I spent Sunday afternoon with family all of whom mean so very much to me.  It always brings me great joy to spend time with my brothers, sisters in-law and gazillion nieces and nephews. 
The love of my life.  :)  
And, after feeling so miserable the night before, walking into the craziness of my dysFUNctional family helped make my smile real again and feel the happiness I temporarily lost.  I attended orientation at Rider University and registered for classes for the graduate program I'm starting in September; my time has finally come to accomplish a personal and professional goal that I've wanted for so long.   Twinkie's inherent love for Zachary continues to amaze me and make my heart smile; she loves him unconditionally and is the best friend he is so deserving of.  So thanks, Annie.  Life sure does suck sometimes, but your words and true feelings unexpectedly resonated with me last night.  


The sun'll come out  Tomorrow  Bet your bottom dollar  That tomorrow There'll be sun! 


Just thinkin' about  Tomorrow  Clears away the cobwebs,  And the sorrow 'Til there's none! 

When I'm stuck with a day That's gray,  And lonely.  I just stick out my chin And Grin,  And Say,  Oh! 

The sun'll come out  Tomorrow  So ya gotta hang on 'Til tomorrow  Come what may 
Tomorrow!  Tomorrow!  I love ya Tomorrow!  You're always  A day Away! 


Today is that day.  

Sunday, July 15, 2012

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. 

Wednesday, July 11, 2012

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

Monday, July 9, 2012

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

Sunday, July 8, 2012

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

Tuesday, July 3, 2012

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!  


Sunday, July 1, 2012

The build-UP to the MeltDOWN

Much like Twinkie, Zachary has an affinity for LEGOs....well at least for the moment.  It really doesn't matter what type of LEGO because if it walks like a duck and talks like a duck...it's a duck.  The reality of this statement, though, is that Zachary has an affinity for anything that visually "repeats" itself.  Included in anything, but not limited to, are LEGOs, Dr. Seuss books, "tall towers" (aka high-tension lines), trains, videos, Google images,  tv shows, flash cards, trucks, balloons at Party City, traffic lights, iPads at the Apple store, the cereal aisle and virtually anything else that will visually stimulate Zachary because there are several of the same thing...whatever that thing may be.  There's actually a pattern here because Zachary also tends to repeat what he hears or wants over and over and over.  Welcome to the sometimes frustrating and always fascinating world that we call perseveration.  


Repetitive Behaviors in Autism (click here for more info about Autism)

Back in February, Zachary started showing a serious interest in LEGOs and Joe bought him his first LEGO set.  OK, the truth is that Santa left Joe a LEGO Space Shuttle set (which he loved, btw) and that's really where Zachary's interest began to develop.  LOL   We'll buy anything that promotes typical play AND is engaging to Zachary, so if LEGOs was the path he was taking us on we were gonna follow him.  Zachary loves outer space so he and Joe bought a small piece to the Alien Conquest set and the rest is history.  By mid-April, Zachary had all of the individual sets that completed the entire Alien Conquest LEGO set.  This was largely due to the fact that his birthday is the end March and he received lots of sets as gifts which was awesome!  :)  What was most interesting is that not only did this support Zachary's need for this type of visual stimulation, BUT he played with Alien Conquest as typically as any other 9 year-old boy.  He was appropriately engaged, showed reciprocal play and language skills and even showed some abstract play which is usually real tough for Zachary.  We couldn't have been happier!!  

Zachary used his birthday money to buy the Alien Conquest Mothership!!
Having said all of this, Joe and I both agreed that we wouldn't buy any other LEGO sets since there was such a huge risk for all of this appropriateness to quickly turn into another form of perseveration due to all of the other LEGO sets that are available.  Well, that was until we were in Ohio and Zachary was on the verge of completely losing it at the mall one afternoon while we were training and all he wanted was a small LEGO Ninjago set.   Against our better judgement (and we both knew it), we bought a small Ninjago set which Zachary was thrilled about.  And, yes, it did talk him off the edge, so, if even for a moment, it helped us out. This was an exception and the only exception.  We knew we were on a slippery slope.  After we got back home to NJ, Zachary took a trip to Target with Joe, Twinkie and Grandma.  Zachary can be very convincing, and this is where he managed to talk Joe into letting Grandma buy him another Ninjago set.  This can happen very quickly if you're not ready for it!  UGH!!  "What happened to the Play-doh we had talked about, Joe??!!",  I said to myself when they got home.  UGH!!  After I got over the surprise of seeing Zachary walk in the house with a LEGO box and the fact that I wanted to kill Joe (just keeping it real!) for letting him get it,  we had to deal with the fact that we were now navigating the unpredictable, choppy seas of breaking a newly established perseverative behavior. Good times.  

For days on end, Zachary has been begging, pleading and REPEATING himself over and over again with a seemingly simple request...more LEGO Ninjago.  It's enough to make you scream at some point, and I finally did exactly that today a couple of times.  It only lasts a second when I do scream because a) I've got Zachary's attention and have momentarily busted through this behavioral pattern and b) I can't fly off the handle when I'm trying to teach the child who can't modulate himself when he's upset that it's okay to fly off the handle.  Unfortunately, this was going to come to a head whether any of us liked it or not.  It's the nature of the beast.  

After being repeatedly told "No" as well as being offered a gazillion options and distractions, Zachary just couldn't deal with it anymore.  He started yelling and crying. He started to pound his hands and cry even harder.  Zachary was begging and pleading and yelling at me and yelling to me.  He was telling me he was frustrated, sad and stressed.  Despite the fact Zachary was yelling, he WAS doing everything else right and using his words to explain how he was feeling. After all, we tell him all of the time to "Use your words.  It helps Mommy and Daddy know what's wrong."   My poor little guy just could not understand why I wouldn't "help him" and buy more LEGOs.   It's heart breaking because at this point there is very little we can do to make the world a better place for Zachary.  What's different about this type of meltdown, though, is that it's based on genuine frustration and sadness versus frustration and anger.   Either way, these are emotions that are still difficult for Zachary to manage which is part of the reason he has a service dog.

Zachary ran out of the kitchen and into the TV room when he stopped by the stairs and SCREAMED...I'm talking SCREAMED.  It made me jump because I honestly didn't see a scream that loud coming.  As soon as that happened, Twinkie got up from under the kitchen table where she was sleeping and ran directly to him.  She was so alert and so on top of where he was so quickly that it was kinda crazy to see.  Honestly, she was standing in front of him before I even had a chance to think about calling her.  This definitely distracted Zachary enough to make him start to cry big, sad tears, jump on the couch and yell, "I NEED TWINKIE!  I NEED TWINKIE, MOMMY!"  I gave Twinkie the "love" command and also included "over" which involves her laying across Zachary's legs to provide deep pressure which is calming to him...the rest is history!   Zachary was still yelling and crying, but it was not nearly as intense as it was just a minute or two before. Twinkie gave Zachary a lot of "love", and I gave her a lot of treats to reinforce this the entire time she helped him calm down.  He was rubbing his fingers and hands through Twinkie's fur, holding onto her and letting her help him de-escalate.  For as much distress as you can see in Zachary's face, you can also visibly see his body change as Twinkie helps him relax.  

Blessings come in all shapes and sizes.
It's impossible to explain the warped sense of pride and happiness I felt when I watched this all unfold...happy endings.