the perfect dog

"I DON'T want a big dog.  Cecil is the perfect dog.  I just *sigh* ... I NEED. HIM. BACK!"

My almost eight year-old son's face, mere inches from mine and shrouded in utmost seriousness, commanded my attention.  His eyes wide, locked on mine, bravely held back tears. His monologue plea was slow and deliberate... with borderline staccato speech ... every word calculated to count, his mind meticulously grinding out thoughts in words that had been silently churning for a while.

And, once again... this little man broke my heart.

Raising a kid with intellectual and learning disabilities can be heart-wrenching.  My Ben is pretty high functioning, as IDIC 15 goes.  But, he struggles in a lot of ways.  He seems to learn in bits and pieces, but the pieces aren't always complete and they don't always fit together.  I sometimes picture information in his mind like a collection of jigsaw puzzle pieces that are not all from the same puzzle.  Through no fault of his own, his attempts to fit them together often fall short of what is needed to keep up with the world around him and his understanding of that world is sometimes partial and incomplete or skewed.

When we made the decision to rehome Cecil (the dog I agreed to get him for his 7th birthday), Jen and I explained it to him as best we could.  I wasn't convinced that he completely understood, and there was some push back from him, but  much less than I expected.  He definitely loved Cecil, but he had made it clear numerous times that he preferred a bigger dog... and it seemed clear to us that a bigger dog would be more compatible with his disabilities.

Rehoming Cecil went relatively smooth for Ben... almost too smooth.

Fast forward a few months... I was leaving my parent's home one evening a few weeks ago.  I had Ben with me and Cecil (now Billy) was out with his humans (my parent's neighbors).  I figured it would be a good time to let Ben visit Cecil, so we pulled in the driveway.  Ben was excited to see him-- too excited, really-- which confirmed our reasons for rehoming the dog.

A few days later, Jen randomly took Ben to see The Secret Life of Pets, which she said had some themes she was not impressed with... especially for Ben.

It seems those two events shook some emotions loose for Ben.

From what I gathered from this plea for his dog, it seemed he was blaming himself for Cecil needing to go away.  It seemed that he thought his preference for bigger dogs caused Cecil to be rejected by our family.  I think he felt like he let Cecil down.  He was passionately trying to make an appeal for Cecil with the premise that he is the perfect dog and he really doesn't want a big dog.  He had a quarter in each hand and he was telling me he was going to "give some coins to her [Cecil's new humans] and she can buy her own dog" because Cecil is his.

I hugged the little guy and buried my face in his hair, holding back tears of my own.  My heart hurt.  I just wanted to take his disabilities and struggles away.  I wanted to make the world make sense to him.  I wanted so bad to fix it.

In a feeble way, I tried again to explain to him...

But, I'm pretty sure I let him down.

I couldn't quite make him understand.

I couldn't fix it.

I couldn't bring his dog back.

And... I can't fix broken hearts... or intellectual disabilities... or genetic disorders...

For the rest of that day (and a few days after), I was in a funk.  What kind of Dad gets his intellectually disabled son a dog and then takes it away?  What kind of Dad breaks his son's heart like that?

And, why does there have to be such a thing as IDIC 15?  Why my son?

That same evening, I was angry that my son was hurting and I made this post to facebook:

It is hard to watch someone you love struggle in some of the ways that Ben does.  It is hard to know that he will struggle his entire life.  And, it is hard to know that you can help him through the struggles the best you can, but you can never take them away.

I still believe trying a dog for him was a good parent moment.  And, I also still believe rehoming the dog was the right parent decision.

But why does loving this kid so much have to hurt like it sometimes does?

---

Author's note:  I had a difficult time putting this post together, but I am happy to report that in the past weeks he seems to have pretty quickly bounced back from being upset about Cecil.  He is a happy kid and it might have bothered me a lot more than it actually bothered him.  He talks about him on occasion, but it is more of a passing comment like before the visit.  

But, who knows what is rattling around in his mind and what will shake it loose?  I'm thinking maybe visiting Cecil is not the best thing for Ben... we'll see how things go from here.

I'm not sure how or when, but I'm thinking the subject of a dog for Ben is not closed.  He's still a kid that would benefit from the right dog.  However, a dog is a hard fit for our family dynamics and I know I will be afraid of risking my son's heart... again.

And... if Cecil [Billy]'s humans read this blog, do not feel bad... you gave a good dog a great home and I say thank you for loving our Cecil!

stoker

I've been taking Benny biking with me nearly since he was big enough to sit up independently.  Back in the days when the two older boys were younger and would routinely go biking with me, I bought a trailer to tow behind my bike so that Ben could join us.  It will hold two, so I towed both Ben and Lily a few times, but Lily soon was able to ride her own bike.  I would often ride with either Dylan and Zachary, who at the time could manage 15-18 miles on our local bikeways; or I would go with Lily, who could manage 10-12 miles.  But, the constant was that Benny ALWAYS wanted to go.

As the kids have gotten older and their interests have changed, they rarely want to ride with dad.  But, Benny has never turned down an opportunity to go, so it has often been just the two of us.

Two favorite memories stand out from the bike trailer years.  The first is the trip that he insisted that "Monkey" go with us.  We strapped Benny and Monkey into the trailer and away we went.  He was chattering to Monkey for miles while I pedaled... good times!

A boy and his monkey enjoying a ride!

The second memory was a time that he took a few (I think about four) Hot Wheels cars to occupy him in the trailer.  After a while, as I was pedaling down the paved bikeway, I heard something go "tink, tink, tink..." on the asphalt behind me and fading away as I rode.  A few moments later, "tink, tink, tink..."  What is that sound?  "tink, tink, tink..."  After about the third time, I finally suspected that we may be leaving a trail of Hot Wheels as we rode.  I turned around and rode my backtrail a little way.  Sure enough, there they were.  There was a small gap at the back corners of the trailer fabric, and Benny was chucking Hot Wheels out the gap!  We managed to retrieve all the cars... I think!

But, we are reaching the time when Ben has to squish himself into the trailer to go with me.  For several months, I have been pondering an alternative.  I don't want to stop taking him.  He loves to go on adventures with dad and I like hanging out with him.

Barely fits!

With Ben's developmental disabilities, it took him a long time to get the hang of operating pedals.  But, once he finally got it, he really goes!  His balance and coordination, though, is such that I questioned whether riding a traditional two-wheeler was something he would ever be able to master.  At the very end of last season I took the training wheels off... just for curiosity.  To my amazement, he figured it out pretty quickly!  I was thrilled!  Still, it was a very rough start, and the riding season was over... so, in the shed went the bike.  This spring when I got the bikes back out of the shed, he picked up where he left off, and really surprised me.  After riding in circles for a while on the driveway, I decided to venture out onto our fairly quiet street.  We rode a bit back and forth, then to a nearby church parking lot, where he really cranked it up (he likes going fast!).  He's a bit wobbly and we REALLY need to work on brakes... he tries them, but often panic stops (or tries to) with the toes of his sneakers against the asphalt.

I'm very encouraged, though!  I questioned if he would ever be able to ride independently with me, but I can completely see it as a possibility... eventually.  I still think it will be a while before he has the safe skills and endurance to go a bit with me on the bikeways. But, someday...

As an alternative to the trailer, I had been considering a buddy bike... a single wheel bike that adds onto an adult bike, making it a three-wheeled tandem.  I had doubts that he would safely sit up straight and stay on the bike, though.  However, when he surprised me with his mad two-wheel skills, I knew I had to try the buddy system.  I started checking CraigsList for a used one, but they were all a little more than I wanted to "risk", not knowing if the option would work.

Then, late last week, one popped up locally that was just what I was looking for at the price I was hoping for.  It was just a few miles from where I work, but I was pretty sure it would not last until I went back to work on Tuesday.  I emailed them and made arrangements to go pick it up Saturday morning.  Ben was staying overnight with his grandparents Friday night, so I couldn't wait for him to get home to see it.

Attached, adjusted, and ready to go!

When Ben got home Saturday evening, he was very excited about his surprise!  We took it out for a few trial spins around the neighborhood and it seemed like it would work.

First trial ride

When we got home from church today, Ben wanted to go to the bike trail!  (And, so did I!)  We loaded everything up and headed out...

Bike and a half!

Ready to ride!

It was a neat experience.  We rode 14 miles together, with him saying "hello" and "hi there" to every passing cyclist.  He felt so cool with his biking upgrade!  It was a bit wobbly, at times, but I was able to compensate for his unsteadiness.  The rider on the back of a tandem arrangement is known as the "stoker"... and for the first mile, or so, he REALLY was.  He was pedaling hard and I could actually feel  the power of the stoker.  A few times I reminded him to go a little easier so he didn't wear out.  After about a mile, he discovered that we went just as fast if he coasted... and there was a lot of coasting going on after that!  I didn't mind.  The trail is flat and I am used to towing him.  Every once in a while he would pedal a bit, but towing him isn't too hard on level and it's a better work out for dad.  Even if he is not pedaling, it is still great exercise for him.  Since a characteristic of IDIC 15 is lack of muscle tone, the action of sitting up straight and maintaining balance on the tandem is great to build core strength.

And, pedaling or not, as long as I'm able to tow my "stoker" I love having him along!  I'm excited about the next phase of our biking together!

off track

While Saturday's outing at the Kiwanis Junior Olympics was a good day, I suspect it was a different kind of day for me than it was for a majority of parents.  It was so much more than just watching my kids compete in a few races.  Because of the delays and disabilities associated with Ben's IDIC 15, days like this can be very complex.

Benny spends a large part of his life somewhat in a protective bubble.  He attends a school specifically for children with developmental disabilities.  He rides busing exclusive to his school.  He takes numerous field trips with his school class.  In all of these contexts, he is understood and accepted.  When he attends Sunday School, he has a personal "buddy" who attends with him and looks out for him (a teenage girl who has made helping him in Sunday School her ministry).  And, other than that, he is mostly with a network of loving immediate and extended family members.

But, the Kiwanis Junior Olympics was NOT the Kiwanis Junior Special Olympics.  No... to let him participate in this was to throw him into the world of typical kids... and that's a little scary for this dad!  One thing that worries me in these contexts is the hidden nature of Ben's disabilities.  I think there is a tendency to be more accommodating to disabilities of a more visible nature.  But, visibly, Ben is assumed to be "typical".

When he found out that he was old enough to "run a race like Dylan and Zachary", he was really excited.  To deny him the opportunity would be the safe and protective thing, but it would have really disappointed him to watch his sister participate if he didn't get to.  So, the first question that had to be decided was whether or not he would be able to perform the tasks with little or no accommodation.

A week, or so, before the registration was due, we took him to "track practice"... just like Dylan and Zachary.  We went up to the school track on a Saturday evening and his older brothers were his coaches.  They explained starting, running through the finish line, staying in his lane... then we let him run some 25 and 50 meter sprints.  And... he did really good!  But, that was with five of us explaining, coaching, and helping... a benefit he would not have on the day of the olympics.  We felt, though, that he could handle it and signed him up.

Jen had class, so I took him to the event.  I debated disclosing his disabilities and asking if I could assist him, but no other parents would be on the track with their kids, and it may not have been well received.  Remember... hidden disabilities...

I decided to just let him jump into the big, bad typical world and I stayed off the track, just like all the other parents.  I did have the advantage of having his two older brothers working "inside" and some of their friends are acquainted with Benny, so I asked them to stick close when they could and look out for him... and maybe subtly ask some of their track teammates to do the same.

I have always been (and still am) a protective parent.  But, I don't think I'm in the category of "helicopter parent".  With Benny, though, that is debatable.  Saturday, I definitely approached it.  I stayed off the track and outside the fence when Benny was on the track, but I adjusted my position along the fence to mostly be in as close proximity to him as possible... allowing him to feel independent, but looking out for him.

It was a tough role.  Tough because of some of the things I witnessed that made my heart hurt for my son.

Fortunately, I think a lot of things go past Ben.  I'm not sure he absorbs all of the world around him.  At least not all the bad parts.  I  think he always expects good of people.  But, the world can be mean.  Kids can be mean.  Especially when they expect "typical" and they get a bit atypical.

A lot of typical seven year-olds do not make porpoise sounds.  But, my Benny makes the coolest porpoise sounds EVER!  It always makes me smile.  But reactions of other seven year-olds are not so endearing.  While waiting in the bullpen for his age group to race, he broke out in a chorus of porpoise sounds, to which another young man said, "you're stupid!"  I'm not sure if Benny registered it... I sure hope not.  But my heart broke.  In a fatherly way, I reminded the boy he shouldn't talk to other people like that... but I wanted to hang him by his toes until he could make porpoise noises as cool as Ben!

Ben is also not as spatially aware as most.  In another instance, he was waiting with a group of kids and spontaneously decided to do some leg stretches... like he's seen his older brothers do.  Without being aware of his surroundings, he suddenly crouched and threw a leg out behind him, tripping a boy that was walking nearby.  It looked a little deliberate, but I knew it was absolutely not.  The boy verbally challenged Benny... "Hey kid!  Why'd you trip me?"  I'm not even sure Ben knew that he did, and I'm not sure he registered that the kid was talking to him.  He just went about his business.  So... since I was "hovering" nearby, I helped out by telling the boy that it was an accident and telling Ben to apologize.... which he did, but I'm not sure he knew why.

Yet another instance I foresaw, but was not close enough to intervene.  They ran two heats of  the 50m in his age group.  They lined the first heat at the start, then lined up the second heat five or six feet behind the first, telling them to wait.  To my dismay, Ben was in the second heat.  I couldn't do anything, but I instantly knew that he would run with the first heat, because we explained to him to run as fast as he could when the gun fired.  Sure enough, the gun fired and off went heat one plus Benny.  An official chased him down and put him back in heat two and I feared that he would be confused and not run the second time.  Helicopter Dad was right... gun went off and he stood there because he didn't want to make a second mistake.  With a little prodding, he took off running as fast as he could.

I think all of these moments were harder on me than they were on him.  He appeared to be having a blast!  But, I can never tell how much of the world around him is impacting him, and I want to go ahead of him and smooth things out!

When it came time for the awards ceremony, I was, again, apprehensive for my son.  In every event, they gave medals for first through third places and ribbons for fourth through sixth places.  I wasn't sure whether he would win anything, and I wasn't sure if he would be crushed if he didn't or wouldn't really care.  I'm not a fan of participation trophies, at least not in the typical world... but I was really hoping my son would win something and I wasn't sure he would understand the whole concept of "not everyone can win".

I was pretty sure his best chance of winning a ribbon was the softball throw.  We signed him up for that because it is something he has been working on at physical therapy.  When they did the award, I had my camera at the ready and my fingers crossed.  Sixth... not Benny.  Fifth... not Benny.  Fourth... not Benny.  My daddy's heart hurt for my son, as I anticipated him working so hard and going home empty handed.  Third place medal goes to... Ben!  YES!  No ribbon, but he MEDALED!  I clapped.  I cheered.  I snapped a pic.

And, then I cried.

I'm not sure what the other parents thought, but I couldn't help it.  I sat in the stands and cried.  With some physical challenges... some mental challenges... some processing challenges... my son entered a contest of mostly typical kids to be like his big brothers... and he WON!

He also won a ribbon in one of his sprints.  Man, was that kid excited!  He couldn't see me wiping away tears because I was beaming at the same time.  About 8 or 10 times, he turned around to face me in the stands, held up his medal and ribbon and (with a huge smile) yelled, "I WON!"  Every time he did, I gave him a huge thumbs up and I wanted to stand up and tell the whole stands, "That's my boy... HE WON!"

Benny (center):  "I WON!"

I suspect for most parents it was just a fun outing for their kids to run a few races and maybe win an award.  For me, it was much more.  It was hard to witness some of the reactions of people who do not understand Benny.  And, it was really hard for this borderline helicopter special needs dad to stay "off track".  But, in this instance, the risk was worth it to see him overcome some challenges and proclaim to me (and the rest of the folks in the stands), "I WON!"

Yes, you won, Benny!  But, with or without ribbons and medals, you're always a winner to me!  And... if they gave medals for porpoise impressions... you're medal would be golden!  Love you kid!

the "r" word

This post may be offensive to some, and the Politically Correct (PC) Police may hunt me down, but it's a thought I need to work through. If you're the sort of person that is easily offended by things potentially politically uncorrect, then I apologize, in advance.

I get the idea behind the PC movement. Really, I do. It's about using the least offensive language to describe people, or groups of people, in a way that promotes their respect and dignity, especially toward those who are perceived as having some disadvantage.  Who can argue with that, right?

But, I think it sometimes creates some of the problems it actually tries to solve.

Let me try to explain.

It's supposed to be a people before problems mentality, right?  But, I feel like we sometimes focus so heavily on getting the right words to describe the problem or disadvantage, that we actually loose sight of the people.  We focus so much on getting the perfectly least offensive label that the label actually becomes MORE important than the person.  The emphasis is so much on policing the use of the right people-first language that it becomes political before people before problems.

And, sometimes I think the PC language and movement, if you really boil it down, can potentially become even more offensive than the "offensive" stuff it replaces.

What I'm talking about here is the "r" word... retarded.

There is a movement afoot to totally stamp out the use of the word "retarded".  But, I stand slightly askew of that movement, and you may hear me use the "r" word on occasion. (Gasp!)

Now, before you drag me through the computer screen to tar and feather me and call me a heretic, let me remind you that this post does not just represent a half-baked rant on a random subject.  No, I'm qualified to speak on the subject because I live it.  It's in the house.  It touches a son I love.

To attempt to prove my point, let's do a little experiment.  Which of these statements sounds the least offensive?

1. "Slow or limited in intellectual or emotional development or academic progress." 

2.  "Physically or mentally impaired in a way that substantially limits activity, especially in relation to employment or education."

I'm hoping you voted for the first one.  I did.  To me, the first statement doesn't have an extremely negative connotation.  It doesn't say "you can't".  It says "you can", just maybe in a slower or more limited way than many others.  The second uses the very negative word "impaired", which to me shouts, "you can't!"

Both are according to Merriam-Webster.  The first (my preferred) is actually the definition of "retarded", short for "mentally retarded".  The second is the definition of "disabled", as in "intellectually disabled"... today's preferred term (according to the current whim of the PC Police). When you break it down, the word disability quite literally means "without ability".  Wow... pretty negative, if you ask me.

So, I maintain that, in a pure comparison of the two choices, I find mentally retarded LESS offensive than it's preferred counterpart, intellectually disabled.

I have seen folks post on facebook that they would not continue to allow their child to be seen by a doctor or specialist who still "ignorantly" uses the outdated term mentally retarded.  I disagree.  In fact, not too long ago, I was in the office of the Head of the NeuroDevelopmental Center at a local children's hospital, and he used the words mildly mentally retarded while in conference with me.  I didn't cover my ears and run out of the office screaming.  I respect this specialist.  I was not offended.  He was very instrumental in my son's diagnosis.  It is still an extremely accurate term.  More accurate, I feel, than intellectually disabled.

The problem, however, lies not in the word itself, but in the fact that it has developed into slang over the years.  Calling something or someone "retarded" in a non-clinical way is not okay.  Calling someone a "retard" is NEVER okay.  These uses of the word are so wrong that we have tried to all together ban the word from the English language.

So, here is my take on the "r" word debate.  When it comes to the slang... don't you EVER!  That hits me where I live, and even if it is joking around, it is HIGHLY offensive to me.

But, in a clinical context, I'm not opposed hearing it or using it.  At times, you may hear me say it... because I think it is still the most accurate and actually the least offensive of the two clinical choices.

In all honesty, I don't like labels much at all.  My favorite label is simply "son", because that's what he is to me.  But, sometimes other labels are necessary to communicate needs.

Yes, mild mental retardation touches me where I live, and PC or not, I don't want to hear the message about the one I love that "he can't" because he is "without ability".  I prefer the message... he may struggle more than others, but... HE CAN!

B-E-N

Raising a child with intellectual disabilities can be heartbreaking.  But, to watch your child struggle to grasp things that their age peers learned years ago makes every accomplishment more special when it is finally achieved.  Life with Ben moves a little slower and it gives you more time to savor and enjoy the special moments and developmental hurdles.

IDIC 15 can be a very extreme and difficult diagnosis.  Being a part of a few IDIC 15 internet forums, I see that there are many parents of children with this syndrome that literally don't know how they can get through another day of parenting.  While we feel that way on some occasions, the truth is that Ben is high functioning IDIC 15, and that is a blessing.  While I would wipe the syndrome and all it's difficulties away if I could, being Ben's dad is a joy (albeit a sometimes exhausting joy) that I would not trade for anything.  He's a super cool kid!

And, that brings me to a new level of achievement for Ben and one of those moments I want to lock away in the blog category "Dad's memories" for future remembering.

Unlike many seven year-olds, Ben is still working hard on learning the alphabet.  He gets things in bits and pieces, but struggles with some of the bigger concepts.  He recognizes some of the letters and can put some words to certain letters, but it is still a work in progress.

But, the cool "aha" that has been the latest transition is that Ben has recognized that letters make up words and words have meaning.  While any actual significant reading is still a long way off (and the realist in me hopes that will become a reality for him), this realization is a huge leap forward.

It doesn't seem to bother him that he is not yet able to read, but Ben will sometimes point to words (often on the underside of Hot Wheels cars) with the request, "tell me what it says (sāz)".  That's huge!

One of my favorite manifests of this new understanding, however, is his name.  He's still working on recognizing all the individual letters, but he can tell you his name is spelled "B-E-N".  And, of late, he has mastered recognition of the capital "B", to the point where he often randomly spots B's and asks, "does that say B-E-N?"

I'm so proud of the progress he is making and I love seeing things that many others may take for granted as big light bulbs that are turning on for him.

I consider myself lucky to be your dad, and you're my favorite Ben in the whole world... and yes, that says B-E-N!

unspoken connection

I spent the past Sunday at Kennywood Park with my two youngest children.  For the past several years, we have gone as a family. But, for a number of reasons, it was just Lily, Ben and I this year. 

I tend to be a people watcher in such situations, and I often leave with a few observations. Sometimes they are similar to observations I've already made... such as noticing how many tattoos appear [to me] to be "unfortunate". Were they really sober when they paid someone to permanently put that there?  And, wondering what some folks were thinking when they chose their footwear for a day at an amusement park.  I saw more than one female wearing heels... really?

A new observation this year is that almost everyone smiles when they are riding the bumper cars.  Perhaps the world would be a better place if we all drove bumper cars?

We definitely had our share of bumper car smiles... it was Benny's favorite attraction this trip. Independent operation of the bumper cars requires a height of 52" inches, which Lily achieved this year.  To operate them with the help of a responsible person required a height of 48", which Benny just barely achieved!  In fact, it was so just barely that the first few attempts were met with some hassle over whether or not he was 48".  So, we paid a visit to guest services, where he was measured, certified and stamped "48".  No more hassles... unlimited bumper car access!  Note his proudly displayed arm stamp (below) that he showed to more than one passerby!

"I'm 48!"

Tattoos and footwear aside, the kid moments are the ones I really love observing in contexts like this.  I love catching candid mental (and actual) snapshots of my kids that I want to remember for a long time.  I try hard not to play favorites when it comes to my kids, but there tend to be a lot of these moments with Benny. 

It's not so much about favorites.  It's more about being a different kind of parent to a child with developmental disabilities.  It requires more compassion, more interaction and more protection balanced with risk.  And, in Benny's case, the phases of childhood are extended, allowing more opportunities for those memorable moments.

Sunday was no exception.

A characteristic of IDIC 15 for Benny is struggling with social etiquette.  If he has something to say, he thinks nothing of talking to (and sometimes touching) the nearest random stranger.  As a parent, it is both scary and beautiful.  It is scary because we teach our kids not to talk to, much less touch, strangers.  Yet, it is beautiful because Ben sees people as people.  He doesn't care a whit about some of the things we judge folks by.  He talks to people with which I would not strike up a conversation because I deem them to be unlike me.  Hey, aren't we all more comfortable talking to folks similar to us?  Not really so with Ben.

Parentally, this is very difficult for me.  I need to teach my son about social etiquette and I need to protect him in these contexts.  Yet, I don't want to teach him to see ugly stereotypes like the majority of the world does.  Benny has a naivety that is such a dangerously beautiful part of his life.  I have been entrusted with the job of managing that gift.

So, my strategy is often to closely observe these interactions.  If the other person appears comfortable with it, I usually let it play out for a time I think is reasonable, then I redirect him away from the conversation.  If the person appears annoyed or rude, I obviously redirect him quickly.  I typically redirect inappropriate touching quickly. (By inappropriate, I mean the fact that he touches strangers, not touching in inappropriate places.)  But, on occasion, I have let even that play out a bit when it appears that the person is comfortable and possibly even attuned to the fact that Benny is a kid with special needs.

Such instances happened throughout our day.  But, one, in particular, inspired this post.

It was probably about our 25th ride on the bumper cars.  Benny and I selected a car and waited for the others to fill.  An empty car was to our left (Benny's side).  It was lined up with ours, touching ours and facing the same direction.  A young man (maybe early 20's), who appeared to have Down Syndrome, selected the car beside ours.

Because Benny attends our county school for developmental disabilities, he spends much of his life surrounded by children and adults with all manner of physical and intellectual disabilities.  One of his friends (who lives near us) has Down Syndrome.  Because of this, I suspect Benny is very comfortable with disabilities beyond what you or I may be.

What happened next, I watched as a silent observer.

As Benny looked to his left, he noticed the young man and locked gazes with him for what seemed like a socially inappropriate time.  In reality, it was probably only a few seconds, and it wasn't staring in a negative way, but processing the individual.  Then, still making eye contact with the young man, he reached his left hand out from our car toward his and held it extended.  With no words spoken, the young man reached for Benny's hand and briefly they held hands stretched between our cars.

I don't know if this young man was aware of Benny's disabilities. (Unlike Down Syndrome, IDIC 15 has virtually no physical markers.)  But, I suspect he may have.  It was a beautiful moment that appeared as though some unspoken connection occurred between the two of them. 

After a few moments, the young man ended the exchange with a gentle handshake and a "hey, buddy!"  The cars started and we zoomed off in opposite directions.  A number of times, though, he sought out our car and gave us a playful nudge, which both of them enjoyed.  It wasn't anything creepy, but more like two young men with disabilities sharing a connection that you or I may never understand.

Tolerance is a big buzzword in today's world.  Some are better at it than others.  Truthfully, I sometimes struggle with it.  I should, however, be a lot better at it... Benny's many interactions with random folks during a day at Kennywood seems to suggest that I'm living with a pretty good teacher!

best self

I had to attend a mandatory mindset training session yesterday for my large corporate employer. They do that every now and then.

Being an introvert, I often find them somewhat painful. But, also being an hourly employee, it's a part of a day that I get paid to not do my regular work. So, that makes it a wash.

Maybe I was just having a bad day, but I found this one particularly painful. It was about our company's new leadership principles and something about how everyone in the company is a leader...

Meh... I wasn't feeling it. But, blogger that I am, there was a takeaway.

The question was asked:  "When are you your best self?"

The intent was to tie that best self (whether it occurred on or off the job) back to our role within the company. It was an open-ended question without parameters, but most folks (at least the ones who publicly shared their answers) were going with some type of performance/achievement/career-based answer.

I'm often not wired that way, though. Although I take my job seriously, real life is what happens outside of work. I work to live, not live to work.

I had never really pondered the question, "When are you your best self?"  It didn't surprise me, though, that my answer had nothing to do with work. It also didn't surprise me that my takeaway from the session had little to do with work, or that I spent the majority of the remainder of the session pondering this potential blog post.

The answer I came up with is that I think I'm my best self when I am just hanging out with my youngest son, Benny.  Not every time I'm hanging out with him, mind you.  No, he can try my patience and bring out my not-so-best self, at times... many times!  But, at this stage in my life, the times I see myself my best self are the moments when I let myself be drawn into his world.  Because of Ben's disabilities, he still has innocence and imagination beyond many six year-olds.  When my world and his merge in a way that allows us both to leave reality behind for a period of time and just enjoy each other, he brings out my best self!  It is in those moments that I feel like a good Dad.  It is in those moments when I realize the blessings of parenting a child with intellectual and other disabilities.  It is in those moments when he makes me feel like I'm doing something right. 

No, I don't think Benny really realizes that his six year-old self has a gift to make people happy.  But, he does.  And, when being with him makes the world's pressures melt away and his happiness rubs off in a way that brings out patience, compassion, empathy, imagination... yep, there it is... best self!

best self-ie!

last kindergarten send-off

The last of my four kids boarded the bus for kindergarten this morning. My schedule worked out so that I was there to see it. I have had a few tough moments throughout the day... I'm an emotional and sentimental Dad.

In a way, this is old hat. Ben is continuing his education at the county school, where he has attended preschool for the past three years. I was also there the very first day he rode the same bus, at age two. THAT was hard!

But this was hard in it's own way.

Benny was in a somber mood this morning. He looked tired, though we got him in bed early the night before. When he is tired and stressed, he often has trouble with eye focus, and I could tell he was struggling this morning. He seemed a mix of resigned and uncertain, with some excitement showing through.

We made our decision last spring to keep him in the county school. It is a great school, much like a large family, and we love his teacher this year. I have not second guessed that decision since we made it, and watching the bus pull away this morning, I still knew it was the right option for him.

Yet, at the same time, grief does not just come to a parent of a special needs child at the moment of diagnosis. It can sneak up many times throughout life, sometimes at unexpected moments. This morning, as Ben boarded the bus and pulled away from our home, I experienced a variety of emotions, and grief was among them. 

Let me clarify, though. I was not grieving because of him, but for him.

As parents, we want life to go smoothly for our kids. We want them to excel and become independent and successful. I wish that for all my kids. However, seeing the "MRDD" in the school name on the side of the bus as it pulled away for this new phase of Ben's life, reminded me anew that Benny will have many struggles that my other children will not. Starting kindergarten is a major event in the life of our kids, and this morning Ben's bus set the course of his life in a different direction (literally and figuratively) than that of my other three kids. Although it was the right direction for him, I still had the urge to run ahead of the bus and smooth and fix things for him. I can only do so much, though. But, I can and will love and support him, cheer him on, celebrate him and rejoice in his accomplishments... and there have been many accomplishments to get him to this day.

You go, Benny! I love you, kid! Happy first day... you're my favorite Benny in the whole world!

Home, after a good first day

eras end and begin

Ben is a recent preschool graduate! 

For me, as a Dad, it was a pretty big deal.  Because of Ben's developmental delays, he has been at our county's preschool since he was two years old... for the first months (part time) in the early intervention program, and for the past three years (full time), riding the bus to Mrs. M's class.

 Two years old, first official day of preschool and first day on the bus

Five years old, last official day of preschool

The wrapping up of preschool was a very important time, because decisions needed to be made for the upcoming kindergarten year... decisions by both parents and the school system.  As the school year wrapped up, Jen and I attended Ben's IEP/Transition plan meeting.  We were leaning toward keeping him in the county school program, and felt that integration into our local public school would not be a good option for him.  We were nervous, though, not knowing what the others in the meeting would feel was appropriate (and cost effective).

In the end, the recommendations of his preschool teacher, the district representative and the county educational psychologist were unanimously in agreement with us in favor of staying at the county school.  There was another special needs pod school available in the county, so we toured the county school (Ben will be in a different wing in the coming years) and also toured the pod school, and feel confident that the county school is were he belongs... at least for now.  We met three of the four teachers for his grade level, and fell in love with one in particular.  We have requested that he be assigned to Mrs. Y's class, and the principal indicated that he would be assigned to her for the coming year.

We are very blessed with this school that our county operates.  It has been a big part of Ben's life for most of Ben's life and it is a very special place.  It is a place were much of the staff love what they do and really give themselves to special needs children.  It has the environment of family within a school.  Though they will likely not see this blog, I am thankful for teachers and principals like the ones Ben has been surrounded by.

So, as the preschool era ends, the elementary era begins. 

And, it is a unique year in our home, in that four of four children will change schools. 

Lily moves from Elementary to Middle.

Zachary moves from Middle to Jr. High.

Dylan moves from Jr. High to High.

Wow... just yesterday, Dylan was beginning kindergarten as is Ben.  Now, I have a high school freshman in my home?  Where does the time go?

timely encouragement

Yesterday morning, Jen and I went to Ben's school for a conference with his teacher, his school's principal, our county's educational psychologist and the local school district's special education coordinator.  The conference was to discuss his Individualized Education Program (IEP) for next school year, and to discuss his transition plan from preschool to kindergarten.

The meeting went well, but the days leading up to it were a bit stressful.  We had a pretty good idea what we wanted for Ben, but did not know what the professional opinions in the room would recommend.  There are still details to iron out, but, thankfully, it appears that we are all on a similar page.

As I got up yesterday to prepare to leave for the meeting, I opened my facebook page and found this very timely video.  It was an emotional day, but this video was just the encouragement we needed.  The families featured in this video very accurately describe much of our journey, to date, with Ben. Thank you to the Dup15q Alliance for all you do to support families of children with this genetic syndrome, and for making this video.

If you know my family, and have not already done so, please watch this video.  This is where we live.

Video shared with permission of Dup15q Alliance

are you a bully?

I'm noticing a trend.

I might be guilty of it, too, I'm not sure.  I hope not.  If I have been, I'm going to make more effort to avoid it in the future.

The trend? 

I'll call it, "socially acceptable cyberbullying".

With the use of social media (facebook being the avenue I am most familiar with), it is really easy to post and forward pictures and videos of complete strangers, with the sole purpose of publicly having a laugh at their expense, or making ourselves look good by putting them down; usually encouraging and generating a lengthy brouhaha of comments within our circle of friends.

But, doesn't this look virtually (pun intended) a lot like standard, run-of-the-mill bullying?  I am a father to three school-aged children, two of which have been the victims of some degree of bullying.  Like many parents, I don't stand for that.  It is not socially acceptable, or acceptable in any way, to bully my children!  How dare these weak kids laugh amongst their bully friends at my kid's expense, or make themselves look strong by exploiting my kid's perceived weaknesses! 

(The crowd rises to applause!)

But, don't we do something very similar when we publicly grab a stranger out of context and throw them out there on facebook to yuck it up with our friends?

Now, don't get me wrong... I'm not against having fun on facebook.  And, I'm not a prude that can't have some virtual laughs with my friends.  But, there is a difference between people who deliberately put themselves out there to be laughed at and those who do not (often times not even on the internet by their own choice).

Is it okay because they are strangers?  Is it okay because it is virtual?

I'm not so sure.

Maybe I am more sensitive to this because I am a father of a special needs son.  My son, at age five, does not always conform to all things socially acceptable.  He is not always socially appropriate.  But, he's five and it's kinda cute.  I love him dearly, so it is endearing to me and most of my friends.

Yet, I sometimes notice that he draws some public attention.  People that don't know him sometimes give second looks... sometimes disapproving looks.  It is minor at this age and I think he is oblivious to it.  But, I anticipate that as he gets older, it may become a bigger deal.  We are considering school options for him and one of my BIG fears is bullying.  He is naive, trusting and has virtually no street smarts, making him a prime target for bullying. 

This is one of the things I love about him.  He is the most genuine person I know.  He cares not about what anyone thinks of him... he is just true to who he is.  It is a beautiful innocence.  Yet, it makes him a BIG target for bullies.  It really scares this daddy!

And, the fact is that genetic abnormalities never go away.  There is no cure.  No fix.  He will deal with this for life.

I have high hopes for him.  Hopes for independence and productivity.  Yet, realistically, I know he will always struggle to some degree in ways that most of us will not.

And... what if some day in the future, someone randomly captures him on their iPhone doing something socially inappropriate?  What if that someone posts it to their YouTube account?  What if several other someones then post it to their facebook pages and yuck it up with a brouhaha of comments with their friends about my son?

Well... I'll tell you what... it would hurt, that's what.

Yes, it would kill this father's heart.

He's my son!  It's not okay to bully my son.  It is not okay if you don't actually know him.  It is not okay if your friends don't know him.  It is not okay if you are doing it virtually and not to his face.  It is not okay if he does not know or understand he is being bullied.

It is not okay to bully my son in any way.

Yet, don't we often do this to others? 

When someone captures a random video of a stranger and posts it publicly, then it is laughed at and ridiculed publicly, is it okay if they are a stranger?  Is it okay if it is virtual and not live?

They are a person.  A living, breathing person with feelings and emotions.  And, most of those yucking it up don't know the back story.  Maybe they just had a stupid moment that was captured.  We've all done things we wouldn't want captured.  We've all said, "Glad nobody was watching that!"  Or, maybe, like my son, there is more to the back story than meets the eye.  Maybe intelligence or social understanding is lacking, through no fault of the individual.  Maybe, in some way, they are perceived as weaker or inferior to us.  Is it okay to exploit that for our entertainment or betterment.

On the surface it seems "virtually" innocent and harmless enough.  And, I think it is currently becoming very normal and socially acceptable.

However, sometimes when I see these posts through my daddy's eyes... my special needs daddy's eyes... I am disturbed.

I'm sure I've done it.  I'm sure I will still, at some point, do it.  I'm not holier-than-thou. 

But, I think social media could benefit from less socially acceptable cyberbullying.

I'm putting it out there in writing to hold myself accountable to attempt to do my part.

How about you?

I heard it

Benny makes no bones about it... he's a Mama's boy. 

It never gets easier, but I have grown somewhat used to him preferring Jen over me, even to the point of often trying to love on him and hearing him tell me, "No, get outta here, Dad!"  I now know that IDIC 15 probably has something to do with that, but it still hurts, just the same.

Jen was gone for about 24 hours this weekend on a girl's night out with some friends, so Dad was running the home front.  This has happened on numerous occasions, but this is the first time that Benny hardly even asked about, or talked about, Mama.  Not that I don't want them to be close, but it was kind of nice to not feel like second-- or third-- best to Benny this weekend. 

We all watched a movie in the evening, and Benny actually snuggled up to me.  ME!  He will often choose Dylan as his backup when Jen is not here to snuggle with... but, he chose Dad.  What an honor.  I cherished the moment and even let him stay up longer than I normally would have, soaking up every last bit of it. 

And, then it was off to bed, with no fuss and no crying for Mama.

But, the coup de grâce occurred early this morning.  He awoke a little ahead of the Sunday morning church alarm and came to my bedroom, as is often his custom.  I invited him into my cozy bed to snuggle and he crawled under the covers and wrapped his arms around my neck and the conversation went like this:

       Me:  "I love you, Ben!"
       Ben:  "I love you too, Dad!"
       Me:  "You're my favorite Ben in the whole world!"
       Ben:  "You're my favorite Dad!"

Now, it may not seem like much to you, but, since they were small, I have made a habit of telling all my kids "You are my favorite [insert name] in the whole world".  And, they have all said it back to me (when they were little, anyway... not so much as they get older, but I still tell them.)

I have never heard Benny say it... until today! 

We may soon be back to "No, get outta here, Dad!", but, for today, I heard it... "You're my favorite Dad!"

overall logic

Benny's creative communication logic is sometimes a little difficult to follow.  But, I love that he loves to communicate, and that he is often not daunted if he does not know exactly the right words. 

We got our first significant snowfall of the season Tuesday night and into Wednesday morning.  All the kids were home on Wednesday to start the Thanksgiving break.  Anyone who knows Benny knows that he is a major outdoor lover. It is never really too hot or too cold. He just likes to be outdoors.  So, he was very excited when Jen sent Lily upstairs to get dressed in her snow gear. 

He excitedly asked Jen, "you find my farmers, Mom?"

"Farmers?", Jen asked.

He persisted, "you find my farmers, Mom?"

She didn't figure out what his "farmers" were until she pulled out some snow pants (that he had not seen since last winter) to get him dressed.

"My farmers!"

He was very excited about his "farmers" because, to him, they represented the key to getting outside in the snow.

So, for a priceless glimpse into the mind of Benny, here is what we figured out to be the logic behind his "farmers":

Do you see his overall logic? 

I knew... but I don't know

"I think there's something different about this one", I told Jen within a few hours of Ben's birth. 

Circumstances of the arrival of all four of our children dictated that I met each of them first. I held each of our three sons within seconds of their arrival and held our daughter at the moment she was united with her forever family.  I will forever cherish those moments with each of my children. 

And... when I first held Benny, I knew.  You hear a lot about mother's intuition, but what about father's intuition?

I can't explain how I knew.

I just knew.

---

I am, for the most part, a realist.  Like most realists, I am often mistaken for a pessimist.  If you don't understand realists... well, they say a picture is worth a thousand words:

So, it was not surprising that my realist father's intuition was dismissed.  For the first months of his life, in fact, it was dismissed.  Ben looked healthy and typical, so I, too, often dismissed the thought that something was amiss.  Yet, it never completely left me.  It was a niggling little uneasiness that often hovered near.

When he was months old, it started to become apparent to us that Benny was developmentally starting to fall behind the milestones of his age peers, and we began to discuss this with his pediatrician.  At age two, he was plugged into early intervention programs and therapies two days per week through our county school for developmental delay, and shortly thereafter started seeing a neuro-developmental specialist.  Still, there was not great concern... many kids fall a bit behind and then catch up with their peers.

His realist Dad cheered him on and hoped that they were right... that he would catch up.  Yet, realists are not afraid to consider the "what ifs", and the niggling uneasiness often returned.  What if he doesn't catch up?  I wanted him to.  And, I wished him to.  And, I cheered him to that goal.  But, often, deep inside, I felt there was more to Benny than just a bit of lagging behind his peers.  What if I was right at birth, and there really is "something different about this one"?

I felt that most people, again, viewed even considering that possibility as pessimism.  As though somehow, by my very considering that Ben could be an atypical child, I would bring the fate to bear upon him.

So, therapies continued.  Gains were made.  Attaboy, Benny!

At age three, Ben started preschool full-time at the same county school.  Despite developmental progress, his age peers continued to outpace him and widen the gap.  His neuro-developmental specialist advised to hold the course until and if he reached the point where his developmental age was half of his chronological age.  In his fourth year, that occurred, and the approach was adjusted to begin to explore the possibility of a diagnosable explanation for Ben's delays.  In fact, it was becoming more and more obvious that there was probably something more going on with Benny than we all first hoped.

Early this summer, Ben was referred to a genetic specialist, who ordered a battery of genetic array testing.  Upon observing him, she initially threw out a few possibilities, and we immediately began internet diagnosis research while we waited for the results to come back.  One of the possibilities she mentioned really seemed to fit Ben, and although we hoped the test would confirm otherwise, we were fairly convinced that the results would be positive for this particular genetic syndrome.

When we learned of the results, to our slight surprise, he was negative for that syndrome. 

But... he was diagnosed with another genetic disorder that, prior to that day, the name of which was completely unknown to us:  Isodicentric Chromosome 15 Duplication, also known as Idic 15.

Genetically, the cells that make up a typical human carry 46 chromosomes... 23 from Dad and 23 from Mom.  Individuals with Idic 15 have 47 chromosomes, because a portion of Mom's 15th chromosome gets duplicated.  Our creator designed us very specifically to function with 46 chromosomes, so an extra one really throws a kink in the works.

Idic 15 is considered a "hidden disability".  Because it has almost no outward physical markers, when most people see a meltdown in the aisle of Wal-Mart, they just see a bratty kid with ineffective parents.  I have learned to be much more graceful to other parents in public.  Idic 15 has taught me that things are definitely not always what they appear to be.  The looks and reactions (whether real or imagined) of others, when public scenes occur, used to bother me a lot more than they do now.  I used to question whether I truly was an ineffective parent with a bratty kid or whether there was truly "something different about this one".  I still don't like making public scenes, I don't just blow behavior issues off and chalk them up to Idic 15 and there are still some things we refrain from participating in because of Idic 15; but, I know they are going to happen and I know they are happening for a legitimate reason, so we are now more free as a family to just be ourselves, and there is a certain amount of disturbance that you are just going to have to endure!

Because of Idic 15, my son can potentially be affected by a list of related difficulties (and, he is touched, to some degree, by nearly all of these):

• Hypotonia (overall weakness, "floppiness" and tiring easily)
• Gross and fine motor delays
• Cognitive delays
• Learning disabilities
• Intellectual disabilities
• Autism Spectrum Disorders
• Speech and language delays
• Sensory Processing Disorders
• Behavior and social challenges
• Seizure disorders/Epilepsy
• Attention Deficit Hyperactive Disorder (ADHD)
• Anxiety Disorders

Yeah... take THAT Ms. Perfect-Parent giving me the stink-eye because my son is melting down in the aisle of Wal-Mart!  How many of those issues have you personally had to work through every single day of your life like my son has?

My son is a hero.

He doesn't know that life is not supposed to be this hard... this confusing... this difficult to process.  This is all he knows, and every day he gets up to face the world with bravery, although some of it is scary to him, some of it does not make sense to him and some of it causes him anxiety.  He does the best he can with the hand that is dealt him, and in the process, he brings smiles and laughter to most with which he crosses paths.

Parenting is hard enough. 

Parenting a child with special needs is even harder. 

I want to give him a big squeeze and hug it all away, but, alas, Idic 15 is hardwired into his genetics and it is there for life.  Somehow, I knew it was there, but I admit, I have only just begun to explore what it means.  What does the future hold for Benny?  Or, for us, his parents and siblings?

Well, that I don't know.

But, I know that I love this little guy!

Benny, you are my favorite Benny in the whole world.  I'm lucky to be your Dad, Little Man!