Traveling with Ben

I recently had the privilege of traveling to Europe with my son with Down syndrome. He had flown once before, to Texas to visit family, but never as far as Europe. This was new territory.

Ben was surprisingly easy to travel with. He has an angel's patience when he is not sure what is going on, and he is happy to sit and wait for the next leg of the journey. This one started at Boulder Table Mesa Park and Ride with a bus to the airport. Note the modest amount of luggage -- we prefer to travel light.

We each brought only one jacket along, and Denmark was surprisingly cold this summer, so almost every outdoor picture features Ben in the same jacket. 

Every day on the trip, one of the stuffed animals Ben brought along had a birthday. In this case it was Ben the Bear (stuffed animal in the background is actually a Colorado Christian University Cougar, but Ben has named him "Ben the Bear"). 

We flew from Denver to Toronto to Copenhagen, and thankfully Trans-Atlantic flights are equipped with nice movie choices. Ben COULD NOT sleep on the trip. COULD NOT. So he pretty much watched 8.5 hours of movies on the last leg of the trip. I think it was Zoo-topia, over and over and over again. 

Ben the bear was well behaved, and very attentive to the movies as well. 

In Toronto where we sat for 5 hours, we got a wheelchair for Ben and that made moving about the airport easy and seamless. When I tried to do the same in Newark, the airlines required that a person FOR SAFETY REASONS push the wheelchair for me the entire time. We were not allowed to just get a chair and for me to push it on my own. (Read - slight annoyance. I find the safety risk a red herring). 

An iPad is a great thing to travel with. Ben has a bowling game he likes to do on the iPad. Kept him busy for hours of waiting. 

Danes have real sweet tooths, and icecream is a super nice treat in Denmark. We had it on several occasions. Ben is a big icecream fan. So far, Denmark is awesome. 

Feeding ducks was a past time of my childhood, also one Ben was happy to engage in. 

This one playground was really cool. I would have had a picture of Ben, but apparently I did not take any. This 'playground' is for ages 14 and up. It is actually different exercise equipment out in public at a park near numerous trails you can walk or jog on. This particular piece of equipment works on upper body pull ups, but there were many others. Ben loved this "playground".

We also played stylites. And in this case, I have to brag on my new walking shoes. 

And on Benjamin Nike (Benjamin the victorious --- with Ben the dog in his hand). Why did I later go to Greece when columns were right here to be gotten in Denmark? I am not sure. 

Taking Ben to the beach was a treat. The Danish west coast has amazing beaches. And amazingly just like my older kids who did not grow up with the ocean either, Ben got his feet wet while he was standing at the edge of the water waiting for me to go in and get a little bit more wet. He did not notice that the waves were sneaking up on him. 

What is Denmark without a little viking? We explored part of Ben's heritage by going to the Viking Center in Ribe. 

Sleep like a viking. 

Sail like a viking.

Did I mention that Ben the dog was along too? And that he also had near-daily birthdays?

We did much walking along lush trails like this one. Note the Danish sky here, and above. For the most part it was cold and borderline wet or raining. The Danish summer seemed to afford us only shades of gray. Some days were light gray, some medium gray, and some dark gray. :)

Of course, a trip to Legoland.

This ride Ben did 'all by himself', and very happy and proud he was. I had trouble on the Egyptian ride, another very lame ride, where he was not allowed to sit by himself (decided a young woman who was monitoring these sorts of thing.) Seemed a little discriminatory to me, I said, since he is 19, but she did not budge, and it was not a battle I was prepared to ruin the day with. 

We visited the wild west as represented in Legos.

And had icecream, though that is not quite apparent from this picture which is post icecream clean up.

Yup... the Legowild west, and that, we explored with  Ben the dog, who was along in the suitcase. 

Isn't Ben the dog cute? Note Ben the dog is any stuffed dog owned by Ben -- and there are many of them. 

Ben was a super gem on the way back. He even SLEPT on the plane after a few movies. 

Finally, we were six hours late in Newark because of lost luggage and delayed flights. Ben just put his backpack on the ground and put his head on it and tried to rest (with Ben the Dog). 

Ben -- the perfect travel mate. 

Meaningful Activity for the Developmentally Disabled

What constitutes meaningful activity for a person with disabilities?

A friend of mine reported coming home to his disabled son. My friend greeted his son, cooked dinner, and then kicked his feet up with a book to relax. The disabled son just sat on the couch and stared at Dad until Dad was done reading and ready to entertain.

Meaningful activity is difficult for many of us to engage in. How many so-called typical teen boys get out of school and spend the rest of the day on video games? How many of us waste untold hours on Facebook, Twitter, or just browsing the web? How many of us watch poorly written formulaic TV comedies or crime dramas after work, just to kill time?

Well, time is the only thing we really own that is our own precious commodity, and we are all – so long as we are alive -- given the same 24 hours per day, regardless of our social status, income, health, intelligence or emotional IQ. 

What constitutes time well spent? What constitutes meaningful activity?

Well, our adult sons and daughters with developmental disabilities or mental health diagnoses struggle even more to fill their lives with meaningful activities. Whatever they are capable of, so many of them need active support from another human being to be able to do work, and when that support is not available, they have few choices left – namely watching a movie, listening to music, playing on the iPad, all entertainment-style options.Well, not really true. But the above options are easy. Just hand junior an iPad and you may just have purchased peace for the rest of the day. 

My son likes to color, do math problems, play board games, help in the kitchen, fold laundry, and many other things, but when I am home and I am busy working, if he can resort to a movie on the iPad, that would almost always be his top choice.

I have experienced the situation I mentioned above where I sit and read a book, and suddenly a pair of eyes are staring at me, just staring and staring while I try to read. They will keep staring, either till I chase them away, or till I drop my book and engage with the person. (It feels much like eating at the dining-room table while your hungry dog sits at attention with his most intelligent look, staring right at your mouth, following with his eyes every chewing motion your jaw undertakes until you throw him a bite. In short, it is annoying and unnerving and it is hard to continue what you are doing with such vigilant eyes on you.)  -- And while I sympathize with my son waiting and waiting for me to do something to entertain him (much like 5 year olds would), I also feel a need to carve out a minimum of minutes per day where I can recharge and relax on my own without being ‘on’ all day --- first at work, and second at home taking care of my disabled son.

So, when you picture parents or caretakers of persons with disabilities, picture persons who are almost always ‘on’, either at work or at home, being ‘with’ their persons with disabilities, engaging with them, instructing them, or keeping them safe. “Meaningful activity”  is, in my view, whatever keeps Ben engaged, happy, and for some amounts of time, also intellectually and emotionally and physically stimulated. That involves physical exercise, fun and games with family members and friends (bowling, board games, conversation), it involves self care and home maker skills – personal hygiene, taking care of possessions, learning to be safe in public, learning to get along with others, as well as cooking, doing dishes, doing laundry, cleaning one’s room, cleaning the bathroom, etc. It also involves some job training for skills and also academic pieces, as in continuing education. Job training and part time jobs with support will be available to Ben if I can figure out the transportation piece of getting him from day care to some part time job on a regular basis while keeping a full time job myself. The academic piece is not available after public school ends, so that one I will have to bring to Ben myself by what I choose to do with him at home, and that will involve continuing the 3 Rs.

What is meaningful activity for Ben at Church? Well, the service ‘feeds’ him. He likes to sing and pray, and we go to a liturgical church, and the routine suits him very well, since he knows what comes next and enjoys the routine. Outside the service, in Sunday School, there is no meaningful activity for him unless I or generous friends who care about Ben try to design it. He does not fit with the kids, he does not fit with the adults for the free time of fellowship. He does not fit in Sunday School anywhere, and it is times like that, (along with ‘dead time’ at home when I need to get stuff done that he cannot participate in) that caused me to reflect and think about writing this blog.

So often our adult children with special needs are warehoused (are kept warm, fed, and safe). Often they are simply there. Yes, they are ‘included’ in the sense that they are allowed in the room, but there is nothing for them to do other than to sit there and stare at those who are actually doing something. Sadly, at least in the case of my 19 year old son Ben, he struggles to think up his own things to do. He is not, generally speaking, a self starter any more than most five year olds are. Think of him as your typical five year old who reports to you that he is bored, and then he stands there and stares at you until you find something for him to do. He is not lazy, but he has learned, over the years that the things he can do, he cannot do as well as most people can, and therefore he is happy to stand back, passively, and let others do.When he does attempt something, he often fails as he tries to recall in his mind how he saw someone else do a certain task. That repeated failure is unpleasant, and therefore he avoids those things which he struggles with (just like we all tend to avoid things that bring repeated failure).

Meaningful activities – For special needs it costs a lot of money and a lot of time, in attendant care, in modifications of equipment, jobs, and entertainment, to generate it at a level that the developmentally disabled can participate with.  It is crucial that our developmentally disabled do have meaningful activities. Everyone wants to be useful, and the developmentally disabled no less than any of the rest of us.