make a difference

Yesterday was National Make a Difference Day.  235 volunteers from my church signed up and volunteered in a number of service projects across our local area.  This year, my schedule allowed me to participate and I asked Lily to join me.  A few weeks ago, we visited the table in the church lobby together, to decide what project was a fit for us.  It was a pretty easy pick... and we got the last available slot on the sign-up sheet for this one.  Our chosen mission was to help throw a fall party for the residents of a local home for adults with intellectual and developmental disabilities.  With a beloved son/brother with such disabilities, we knew this was in our wheelhouse.

But, I'm not sure who made the most difference.

The residents may not know it, but they made a difference for me.  The majority of them were extremely warm and welcoming; freely giving hugs, smiles, handshakes, high-fives, conversation, and even a few [slightly uncomfortable] pecks on the cheek. Although a bit reserved, I rolled with it, knowing first-hand that my son and other similarly-disabled folks struggle conforming to what is often deemed socially appropriate behavior.  The beauty of that, though, is that these folks are just real, genuine people.

I left their home feeling happy.  Not happy because of anything I did.  But, happy because I had been shown love and appreciation. They really made my day.

I also left their home feeling encouraged.  See, Benny's future weighs pretty heavy on me, as a father.  I do not know what the future looks like for my son, but I do not foresee him living completely independently.  I'm not scripting that dependence for him, but I try to see things as a realist and, therefore, I feel like he may need some level of assistance for the remainder of his life.  I really struggle with what that will look like when his mom and I are no longer able to look after him, either due to age or death.

What then?

At some point, all three of his siblings have expressed that they can see him living part of the time with them in their adulthood.  That they would each recognize the need, as kids, to look out for him in adulthood, is huge for me.  However, I also know it is not completely realistic... and is it even fair?  They will have lives of their own, and their brother may not fit well with their adult lives.  And, that is completely okay.

But, he's my son.  I love him like crazy and I want him to be cared for and loved.  I want him to have a productive and meaningful life.  As a dad and provider, I try to manage my resources well by living modestly and frugally.  Supporting a family of six on a single income, though, is not easy.  I am not on track for much of a retirement and I certainly don't have much abundance to leave a fat trust behind to help him along.

So, I often stress about what his future will look like when he can no longer depend on me.

The folks I met today made a difference by giving me hope.  Facilities... institutions... homes... whatever you call them, the thought of that for Benny often saddens me.  But, today, I was encouraged.  I was encouraged that there are places where folks with developmental disabilities are loved, valued, and have a sense of family.  The folks I met today love their home and love each other like family.  I talked to many who had lived there many years and they had formed close friendships.  I ate lunch with a somewhat elderly man who wore a ring on his left hand.  I asked him the significance of it and he pointed to the lady across the table from us and said she bought it for him and that they had been "together" twenty four years.  She then showed me the ring he had bought her and verified twenty four years. She told me they were best friends and they look out for each other, proving that understanding true loyalty has very little to do with one's level of intellect.

Many of the residents who are able are also employed at the workshop next door.  Three of the residents told me about the work they do and asked me what I did.  They all three proudly handed me the business card that the workshop prints for them, declaring their name and their title of "Labor Specialist".  Another man showed me a loom that he works with in his free time.  He told me that he and his girlfriend (pointing her out across the room) make scarves and hats for cancer patients and baby blankets to give away.  He showed me one of the blankets that he was working on and it was very nice.

I am very thankful to the many people who make a difference in my son's life, and I was very glad I took a few hours of my day to try to give a little of that back.  But, the love and gratitude, and the hope for my son's future that I received was probably more valuable than anything I actually gave.  Thank you, Eddie, Frank, Ron, Julie, Bonnie, Wally, Glenn (and others, whose names now escape me) for making a difference for me!

panama ben

It was a beautiful Sunday and Ben wanted to go hiking after church.  We got ready, and just as we were ready to walk out the door, Ben decided he should wear a hat.  He disappeared and I expected him to show up with a ball cap.  But instead, he showed up wearing his "cowboy hat".

Said cowboy hat is actually a white Panama Jack-ish fedora-like hat that was purchased at Goodwill a few years back as a potential accessory for a scarecrow halloween costume.  Jen ended up finding Ben a better straw hat, so the Panama Jack hat was never used and was just forgotten somewhere in our house... until recently.  Ben discovered it a few weeks ago and decided it was a cowboy hat.  It is an adult size and too big for Ben, but he is currently quite fond of it.

At almost nine years old, I still love that Ben's disabilities provide some extended childish innocence.  If he likes something, he wears it, and he doesn't care if it's not trendy or how other people view it.  I sometimes worry that this innocence will cause him to be bullied or made fun of, but I love it, just the same.

So, off we went donning his cowboy hat... looking cuter than heck!  I love this kid...

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!

Vacation 2016

I've always been a believer in family vacations and I've tried to make one happen nearly every summer during most of my married life.  This week was a bit different because I was taking the kids without Jen, but I didn't want to let that stop me.  Although I love me some OBX, I felt like something different and closer to home this year.  Growing up, my family took numerous vacations to Mohican State Park and I have always wanted to take my kids there.  I decided on that for this year's destination.  I asked my parents to join us and they were in.  My brother and sister-in-law were able to join us for the first few days and they left their pop-up camper and my niece and nephew for the week.

Planning and packing for five is a lot of work, but I got it all in (and on) the van and headed out early Sunday afternoon.  I don't care what the image, I love the minivan!

Packed and ready

Count 'em... 2 racks, 5 bikes!

We arrived and just as I was backing onto my site, I got a pleasant surprise!  Walking down the road in front of me was Dennis... one of the fourteen Algonquin brothers from last summer's Canada trip.  He didn't recognize me in the van, but I stepped out and yelled, "Evinrude" (his trail name from our trip)... to which he spun around and said, "only thirteen other people know me by that name... how are you, Anchorman?"  He wasn't camping, but was out for a walk in the campground on a Sunday afternoon.  I met his family and introduced him to mine.  What a cool chance encounter that was!

Mohican is a popular destination, so I committed to this vacation plan back in December.  Even though I thought I was making my reservations early, it proved almost not early enough, as a majority of the river sites were unavailable.  A river site was a MUST!  The cost is the same as a non-river site and sleeping in a tent near a babbling stream has always been a bit of a "bucket list" thing.  We decided on sites 152 and 153 as our best options.  They were the last two sites on a cul-de-sac and I remembered them from years earlier as being at a shallow portion of the river.  When we arrived, they were just as I remembered them.  153 (mine) was not very big and not well situated for tenting, but with both sites together, they were nearly perfect.  The river was shallow and babbling, with an almost beach area at river's edge.  Going to sleep and waking up in my tent just mere feet from the babbling river was incredible!  And, the cul-de-sac was perfect with Benny for some supervised bike riding.  More on that later...

Site 153... our home for the week!

Doo, doo, doo, lookin' out my back door!

The river was perfect for afternoon recreation.  Our site had very easy access in and out of the river, and it ranged from about ankle to waist deep (for Ben) near our campsite... perfect for everyone to enjoy.  Ben splashed and tossed stones.  Dylan did some fishing.  Zachary and my nephew worked on improvements to our local rapid.  Lily and my niece splashed, built some rapids and skipped some stones.  I did some of all of the above... and relaxed in a river chair.

Ben tossed stones to his heart's content!

Improvements to our local rapid

Midway through the week, Zachary suggested that we move the EZ-Up canopy into the shallows of the river and sit in the shade.  Normally, I am very fussy with my camping gear, but the EZ-Up is pretty well worn, so I couldn't resist... carefully, we transferred it into the water and were the envy of the river for the afternoon!  Now that's living!

Ahhh... a nice shady spot "on" the river!

And, we also tubed on the river!  Tubing was one of my favorite memories of our vacations at Mohican. Over the years, my Dad had acquired a handful of inner tubes... mostly from my truck-driving uncle.  He patched them up and we always took them with us for river floats.  Back in the day, we all took turns pumping them up with a hand-operated bicycle pump and we would float from the uppermost cabin area down the river to our campsite.  My Dad still had these tubes!  I asked him if they would still be usable and he dug them out to check.  Since they had been stored out of the weather, he did some fresh patching and they were still good to go... 30-40 years after using them as a kid!  And, an addition to the modernization of the park... they now have an air compressor station so we didn't have to hand-pump them all... winning!

The same inner tubes I used some 30-40 years ago during our summer trips! 

Seems like we're always waiting on Dylan...

Seven kids tubing... no wait... I'm the designated adult!

I kept Benny tethered to me for safety... he loved tubing!

Dylan stuck on a rock... again!

These girls both loved tubing!

Typical of Benny, he met a few dogs during the week...

Visiting with Oliver and his human.

There were games and campfires...

And, of course, there where Hot Wheels cars...

20 cars packed... all 20 returned home!

Midweek, I instituted a mandatory late morning hike for a change of pace...

Cousins

A rain shower was an opportunity to cool off with some catch football...

Oops... somebody slipped and fell in some rain-soaked sidewalk chalk!

The pool was pretty chilly.  We used it a bit, but mostly preferred splashing in the river...

I'm not even sure what to say about these...

I love this shot... it is one of Zachary's common expressions

Enjoying the splash pad

And, what is camping without camp chores?  My deal was... I cook, kids do dishes (there weren't many).  I love to parent by Rock-Paper-Scissors (RPS).  It is very impartial, completely removes me from decisions, and it is nearly impossible to cheat.  So, my parenting formula for the week's dishes was Dylan and Zachary compete RPS best two out of three, loser washes dishes.  The winner of that round then went RPS best two out of three with Lily, loser dries.

For the wash... rock, paper, scissors... SHOOT!

For the dry... rock, paper, scissors... SHOOT!

But... of all the fun we had, Benny's favorite thing to do, by far, was BIKING!  Every morning when I would ask him what he wanted to do today... go to the pool, play in the river, go tubing... his answer was always, "go biking!"   I took him on many rides around the campground to hone his skills.  The roads were paved and flat and traffic was slow, so it was perfect for him.  I always rode beside him to help him learn about riding on the right edge of the road, and to protect him from wobbling into traffic.  Over the week, his skills did improve... which is a big accomplishment considering his disabilities.

riding his "dirt bike"

The older kids enjoyed bikes, too

Benny had more than his share of scraped knees and elbows during the week.  I think I did a pretty good job of cleaning, bandaging and kissing boo-boo's...

This camping trip brought to you by Neosporin (or, in this case, Dollar General brand)

But, there was one that Dad couldn't fix!  On our last evening in camp, Benny was sitting near the road on his bike with helmet on... patiently waiting for me to give him the green light to ride the loop.  The other kids were just riding close to camp and I was heating water for dishes.  I told the kids to keep an eye on him and let him ride the loop.  After a little while, I took my chair over and sat in the grass in the center of the loop.  I had only been there a few minutes, when Ben was involved in a crash right behind my chair.  Dylan witnessed it and said that Benny stopped in the grass and was sitting still on his bike.  Another kid that was camped nearby crashed into him at a fairly high speed.  The crash was so hard that it partly twisted his handlebars.  Unfortunately, though, Ben's pinky ended up between the two handlebars and (I assume) the other kid's bar end sliced the tip of his pinky through the nail and nearly to the bone.  I started my usual clean up, and then quickly surmised that this one would need a trip to the ER.  We were a little over an hour from our local children's hospital, so that is where we headed.  My sister-in-law (a nurse) helped me wrap it and control the bleeding.  I took Dylan with me to keep an eye on him during the drive and took off for the hospital.  Jen met us there.  X-rays showed no bone damage, but he needed four stitches to put his fingertip back together.  Once he was patched up, I drove back to camp and Jen took him back home.  Not a good way to end a vacation, but the injury could have been a lot worse... and at least it happened the evening before we were leaving.

It's pretty ironic that Benny is pretty accident prone, but his very first trip to the ER was earned by sitting still on his bicycle!  Poor kid!

Ha!  The shirt says "Push The Limits"... that's Ben!  (Back home and bandaged up)

And, finally... some obligatory family photos...

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!