Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Sunday, May 20, 2012

Hope SPRINGs Eternal...

       The onset of Spring on the Cape lulls one into a state of peace and an excuse to take a spring-break from writing....just for awhile.  Some pictures from around the house will explain the feeling....
Rhodies in full bloom around the property

At the front door...

Supper time at our koi pond   

A new koi pond waterfall built by moi ,,, hence, not blogging

New life on the pond behind the house

Our pond cormorant looking for lunch

Of course, Ollie basking on the back deck  in his fur coat..

Ok, so that's why it's spring break in Falmouth, back soon!

Monday, May 7, 2012

Summer Camps: When Severe Disability Is NOT An Issue: Guest Post by Sarah Hart

     It's both an honor and a pleasure to host this guest post by Sarah Hart.  Sarah responded to my blog a year ago when I bemoaned my belief there were no opportunities for a severely disabled kid like Adam to attend a summer camp.  Well, I was wrong and I am so pleased that Sarah was willing to share her experiences with my readers.  Thank you, so much, Sarah!

     Sarah is a seven-year veteran of camps for people with disabilities.  Originally from Michigan, she has spent the last three summers working at a camp in Wisconsin.  She has a degree in English literature and American Sign Language from Michigan State University, and is considering Child Life as a profession after her time at camp.  She would be more than happy to help families figure out how to send their loved ones to camp.  She can be reached at

Going to camp is a treasured childhood memory for many of us.  Nights spent around campfires roasting marshmallows and days filled with activities, anything from weaving lanyards to horseback riding to swimming, glow like fireflies in the back of our minds.  Far from behind a relic of the past, summer camps today offer a wide variety of programs, ranging from the traditional (archery, tent-pitching, canoeing, fishing, hiking) to more specialized (computers, photography, ballet).

Camp is such a specialized series of events, and such an event in itself, that it may seem that it is specifically designed for campers without special needs.  As such, parents of children with disabilities, whether mild or severe, often feel like there is no place for their child in a camp setting.
: A ventilator-dependent camper is lifted up into an accessible treehouse.

As a seven-year veteran of camps for kids with special needs, everything ranging from autism and Asperger’s syndrome to Down syndrome to brain injuries to cerebral palsy to rare genetic disorders, spinal cord injuries, involved medical conditions, and muscular dystrophy to hearing impairment and visual impairment, I am here to tell you that not only is it possible for your loved one to attend camp, it is possible for them to thrive in a camp setting.

Nike used to use a slogan that I particularly liked: “Impossible is nothing.”  While they no longer use it to sell shoes and athletic gear, I still use it when I talk about camps for kids with disabilities.  And it’s completely true.

Phil wrote a post on his blog earlier talking about how kids like his son Adam, who were basically “nursing home material… save the commitment of (the) parents” and how they’re not the kind of kids who go to camp.

Except that every kind of kid is the kind who can go to camp.
A camper with cerebral palsy enjoys a g-tube breakfast as she heads up to the zipline

At the moment I work at a camp for kids and adults with disabilities in Wisconsin.  The particular program I work with is the respite camp, where we accept children, teens, and adults with medical conditions, disabilities, or behavioral problems that make them ineligible to attend most other camps or respite programs.  Our program is one-to-one, one camper to one counselor, and our campers range in age from 3 up, with no real upper limit – I’ve worked with campers in their eighties!  Our campers have a wide variety of conditions, including autism, cerebral palsy, spina bifida, muscular dystrophy, brain injury, PTSD, Down syndrome, among others.  We see campers with severe physical and mental involvement as well as campers with severe behavioral involvement.  Our campers vary in the degree of assistance they need - some need little to no assistance with personal care and participation in activities, and others need total assistance for all camp participation and personal care.  We have campers with feeding tubes, catheters, Port-a-Caths, tracheostomies and other various "ostomies", brittle diabetes, intractable epilepsy, self-injurious behaviors, DNR orders, and more.  We have two nurses on staff during the summer and usually one CNA to accompany them in the summer; during the "off" season when we are only running weekend programs, we have one full-time nurse and usually a second nurse for check-ins on Friday night.

Our camp offers a wide variety of “traditional” camp activities; swimming, cooking over the fire, painting, soccer, volleyball, paper crafts, and community trips, just to name a few.  All of our activities can be adapted to any range of function.  We have a dance every week, and everyone goes on an overnight camping trip, sleeping under the stars at one of our lovely campsites, set back into our 400-acre forest; natural beauty is everywhere.

In addition to the traditional camp activities, we offer a high-ropes course, a travine swing, and a climbing wall with a zipline.  The ropes course is set up so that everything except for the high-ropes elements is accessible to campers with physical disabilities.

Our goal is to provide a special, fulfilling experience for our campers.  If a camper is happiest when observing activities, or walking around camp, we make it happen.  If a camper loves all the activities, we encourage them to participate to the highest degree.  If a camper is unable to sit in a wheelchair for an extended period of time, we improvise.  Some campers hang out on blankets or beanbags; others may bring their own positioning chairs.  No matter how they are positioned, our campers are always in the middle of the action.  Our one-on-one setup guarantees it.

It is my belief that camps for kids with disabilities are an extremely valuable resource.  Camps provide breaks for parents and caregivers, while at the same time providing new experiences for campers.  Campers have the opportunity to make friends, try new things, and have adventures.  Camps provide the kind of experiences you want to remember.
Drumming: Music is a great afternoon activity at a camp for kids with visual impairments.

Here is just a short list of the potential experiences available at camps for kids or adults with disabilities: cook outdoors; write songs or poetry; identify birds by their calls; canoeing; tour a local monument or museum; archery; put on plays; camp 
out in tents; swimming; sculpting clay or stone; play Earth Ball, soccer, hockey, tennis, baseball, or volleyball; build models; tie-dye, tandem bike trips; games like tag or relay races; attend concerts or other live performances; play instruments; pontoon-boating or paddle-boating; group sing-a-longs; murder mystery evenings; purchasing items from the camp store; campfires; and spending time on high or low ropes courses.

And that may just be the beginning.  Remember when I said that I loved the slogan “impossible is nothing”?  Well, it’s true.  Throughout the seven years I’ve been working at camps for kids with disabilities, I have been witness to many things that I’m sure most people would find impossible.  Here are two examples.

During my first year at a camp for kids and teens with visual impairments, we took a group of kids on a week-long canoeing trip.  All of the campers were either legally blind or completely blind, and half our staff was too.   We carried all our supplies and food.  Sighted counselors steered the canoes, but our visually impaired campers were responsible for paddling their weight, setting up and taking down camp, and assisting with cooking and clean-up.  At the end of the trip we were able to tour a dry-docked World War I submarine, and then we spent the night onboard.
On the boat: A camper with cerebral palsy enjoys a boat ride down the Wisconsin River.

Exciting?  Heck yes.  Tiring?  Oh yeah.  Impossible?  I don’t think so.

A year later I had the opportunity to spend some time at a camp for kids who were on ventilators.  These campers were some of the most physically-challenged people I have ever worked with.  And yet we took the time to rig them – and their ventilators, vent batteries, and other necessary equipment – into rock-climbing harnesses and haul them up into a specially-adapted treehouse, or high into a tree’s limbs.  The best view from the treehouse was to look over the side and see all of those high-tech, super-specialized wheelchairs on the ground, empty.

Unbelievable?  At first.  Awe-inspiring?  Totally.  Impossible?  Not anymore.

If having your child be a part of something as exciting and amazing as the activities listed above, you might now be wondering how to pick a camp for your loved one.  Here are some tips on finding a camp that’s right for you and your child.

1    1.    Pick a camp that is accredited by the American Camp Association (ACA).  Their website can be found here:
Camps that are accredited by the ACA are part of a 50-year tradition of providing safe and well-maintained camps for all campers.  Accreditation is based on a 300-point inspection that covers all areas of camp.  Every inspection covers all salient points of camp, from food service to the waterfront activities, from health care assessments to transportation of campers.

The ACA also has a helpful “Camp Finder” on their website, which can help you find a specific camp that’s right for your loved one.  The Finder, which can be found at, is able to narrow down camp choices based on specific disabilities or health conditions, including severe food allergies, burns, autism, mobility limitations and more.  It is also possible to search based on camper age, camp location, session dates, or camp cost.

     2.   Once you’ve found a camp that you are interested in, set up a tour.  Most camps are more than happy to have potential campers and their caregivers come for a visit.  Tours are a great time to check out facilities and program offerings, as well as to ask questions about all things camp related.

Here are some questions that you might consider asking on a tour.
-          What is the camper to staff ratio?
-          What sort of training do staff members go through?  Are they required to know CPR, first aid, etc.?
-           What are the living arrangements like?  How many campers sleep in a cabin?  Who watches over the cabin 
              during the night?
-          How long are the camp sessions?  What is a typical day like?
-          Who is responsible for giving medications and/or treatments throughout the day?  Is it a nurse?
-          My camper has a trach/ventilator/oxygen/other medical needs that are very complex.  Would it be possible 
              for my camper to bring their own nurse?
-          How many lifeguards oversee the pool?  What is the protocol for a camper who cannot swim but wants to
              get in the water?
-          What are the safety precautions in place for the ropes course?  If my camper cannot stand or support their 
              own weight, how will they use the course elements?
-          For off-camp trips, how will my camper be transported?  What kind of training are drivers required to
-          What activity is the most popular or the most memorable?  Is there anything special about your program that 
              makes your camp the best choice for my child?
Campers with all types of abilities are celebrated and loved at camps

A tour can help you to decide if that particular camp is the right one for your child.  If you feel like the camp’s programs are great, but your camper has far too many medical needs to go to camp by themselves, ask the camp if they would be receptive to having your camper bring their own nurse.  At our camp here in Wisconsin, campers with tracheotomies and ventilators typically bring their home-care nurse, who does all of their personal care needs, while the counselor is responsible for the camper’s participation in activities.

The camp may not agree to this arrangement right away, but offer to help them work out a plan.  They may not be responsive because they may not have thought about such a situation before – it’s possible it’s never come up before!

The right camp will work with you to figure out a plan that will enable your child to go to camp.

3     3.    If necessary, investigate possible sources for funding a camp experience.

Some campers already receive funds for respite care, whether in-home or otherwise, through the state.  It may be possible to put those funds towards your child’s camp experience.

Charitable organizations like the Lions, Kiwanis, or Elks are often looking for service projects to sponsor – so, why not your child?  Write a letter or give a presentation about why it’s important for your child to go to camp.

Some camps have scholarship funds for campers who demonstrate financial need. 
At the dance: Some camps have fancy dress nights or special dances, where everyone can celebrate.

During my second year at this camp in Wisconsin, I was giving a speech about camp to a group of college students who would hopefully become counselors or other staff members at our camp.  I showed them pictures of our camp, including our ropes course, swimming pool, and off-camp trips like canoeing or camp-out.  I watched their mouths drop open as they considered the possibilities.

A student in the back raised her hand and asked me how a camper who uses a wheelchair could possibly go down the zip-line – they couldn’t stand, or bear weight, or…

I flicked back through my photos and found one of a camper being strapped into the ropes harness.  This particular camper has no control over any of her limbs, cannot swallow, and cannot stand.  And yet there she was, strapped in, with her g-tube feeding backpack hung on a carabiner and attached to the harness above her, heading up to the top of the tower, where she would then be launched down the zip-line.

It was possible because that was our mentality.  We didn’t look at any perceived obstacles – we saw only one thing: a camper wanting to go down the zip-line.  It didn’t matter that she couldn’t walk, talk, swallow, whatever.  What mattered was her desire to participate on the ropes course like every other camper… and so that’s what we worked with.

A camper’s desires, or even their parents’ desires, to have amazing, life-changing, completely memorable experiences, are what drive summer camps for people with disabilities.  These camps are places of possibility, of acceptance, of hope.

As a seven-year veteran of camps, it’s often hard to explain my philosophy to new staff members, or even to outsiders who have no idea how much summer camps can impact lives.

I simply start out by thinking that anything is possible… and then I figure out how to do it.

I hope you will consider that a camp experience for your child is possible, even if it takes a little creative thinking to figure out how.
Campers with all levels of physical ability can participate in a game of four-square.

Swimming: The pool is a great place to spend hot afternoons.

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