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. 

Welcoming Persons with Special Needs in Church - Part I Youth Groups

Ben on the banks of the Severn River, USNA, 2013.

Have you ever been alone, really, really alone in a HUGE CROWD of people who are having a blast? Many persons with special needs live like this every day, feel like this, no matter where they are at, even in Church youth groups.

I have been musing for a long time on what it means for the church to include persons with special needs – or for that matter, what it REALLY means for the Church youth group to include everyone.

This is not an indictment of my church, which does as well as any other church on this issue. This is a commentary from the 'inside' to people on the outside as to a few ideas of how churches can include special needs persons in their activities without singling them out for an annual 'special needs event'. 

(Special needs events, while useful as fund raisers and for raising awareness, are in my opinion sometimes even damaging. They give people who attend a sense that they -- compared to others -- have 'done' something for special needs, but when the event is over, they, along with most everyone else at the event go home, FEELING GOOD, while persons with special needs are just as segregated and ignored as ever).

Today’s church is very segregated. We have age-segregated Sunday School, and then we have support groups for singles, for married couples, for college students, for young professionals, for young moms, for the elderly, or for those recovering from addiction, gambling, divorce, illnesses, etc. Much like businesses do it, churches ‘target’subgroups of the population and then ‘sell themselves’ to that group. That is how churches grow, by appealing to splinter groups with needs in society.

Nothing wrong with finding ways to get people to go to church, don’t get me wrong, I am all for that.

The problem with the age, ability, interest group mentality is that it often leaves out persons with special needs, who often when it is all said and done are so uniquely alone that they would comprise an interest group of ONE.

Some churches do successfully reach out to persons with special needs and do adult special needs events or youth special needs events, and that usually works for subgroups like persons with Down’s who are at about the same ability, or other persons who comprise a decent sized group, who have the same abilities roughly.

But for most developmentally young persons or adults with special needs, not only are there not enough of them at most churches to do a class or an event just for them,  more to the point, they are SO segregated most of their lives that what they really yearn for is not another once a year special needs event where they are center stage for a few minutes. They really just want to be part of a larger group. They don’t ask much; they just want to be included – i.e. recognized as human beings, the same way anyone else would.

My son, for example, LOVES to be included in everything, but because he has ‘needs’ that are … ahem… ‘special’, there are many things he cannot participate in either because they are too mentally or physically demanding and he does not have the capacity to keep up, or because they are too loud and too stimulating for his ‘autistic tendencies’. Recently he darted out of such an event at lightening speed. Something triggered him in the midst of the excitement of the young people around him --- something told him that everyone else was loud and laughing and having a good time and that he was SO not part of it, he just had to get out of there.

So what does it look like to include persons with special needs in our churches? 

1.    Less age segregation, more integration of everyone from the 90 year old with the walker to the 3 year old who can just about play Candyland with some proficiency.

2.    Center an ALL inclusive activity around

a.    Eating, and letting the person with special needs bring something he can share or serve to some of the people there.

b.    Simple dancing  (like Greek line dances) in a way that wheelchairs  or persons in chairs can feel part of too

c.    Fun singing (everone can sing)

d.    Various games, some of which anyone can play.
(Uno, Bingo, sack races, Monopoly Jr., Sorry) (Not super competitive loud games)

e.    Prayer time with candles and a quiet atmosphere

f.    throwing balls (big, soft, easy to catch balls)

g.    writing with chalk on a sidewalk

h.    baking cookies for college students far away

i.     writing cards of thank you or of encouragement.

j.    Clean up projects

k.     Raking leaves in the neighborhood

l.     Christmas caroling

m.  A simple nature walk

n.    Serving at the local food bank

o.    going to a G rated movie

And stay away from really competitive acitivities that get kids hyped and make kids who cannot keep up feel left out. Focus more on caring and compassion, on making room for those who do not ‘naturally’ fit in as well, and challenge the more gifted young persons of the congregation to ‘invent’ ways of including those who don’t naturally fit.

Make it structured (youth with limited communication skills are often lost in a group, and even more so if they perceive that everything around them is loud and chaotic).      

Try to find ways for the youths with special needs to ‘lead’ once in a while, be that showing everyone the way to where they are going, serving part of the food, or calling everyone to order with a big whistle.

Make it short enough that there is a clear end point to the activity, where youth with short endurance can leave without feeling that they were pulled out in the middle of something that everyone else got to continue in. Once they are gone,  typical youth can linger longer as they choose.

And one thing Ben’s teacher  at high school recently suggested to me: ‘front load’ the youth with special needs. I.e. tell him and his caregivers in advance what the topic for the evening is, so the caregivers can help the youth with special needs participate and feel included right from the beginning of the event. For example, if a person, like my son, communicates through a communication device, the device can be programmed in advance with 2-3 things he is going to say about the topic, so that he actually has a living chance to feel like he is talking with the rest of the group.

Youths with special needs BELONG in our churches, and if they belong, we need to make room for them. 

Making that room is difficult because it requires forethought. It is not enough simply to assert that Ben is welcome there 'any time', when the fact is that most activities are not inclusive enough for him to participate in, and also, he cannot be there without a support person to help navigate his emotional mayhem if things get loud and he does not understand what is going on.

In order for Ben to even begin to function in a group setting, we/I/the leadership have to make sure that nobody is too loud (or he runs away and hides), that we have ways of making him feel that he contributes to the group (or he will think that every time anyone laughs, they are laughing at him), and finally, I have to pick only events where there is no overt competition or hype, or he simply cannot handle the experience. (This of course means that he cannot come every time, but perhaps we can have a few events every year that are closer to his needs where he can come and join the group as an equal participant). 

Ben does best when all ages are included, that is, when the atmosphere is collective and collaborative, not competitive. And seriously, I think that is more so what the church is about than it is about competition. (IN fact, WHEN should church ever be about competition?)

I wonder, for every Ben who cannot function in a competitive environment, how many young and otherwise ‘normal’ boys and girls likewise sit and cringe because they feel left out, and frankly embarrassed at their inability to fully participate in the games and activities  that are super fast and super loud.

The Church is a house of prayer where we worship God corporately, be we young, old, big, small, able or not able. That corporate spirit should permeate every activity the church undertakes – that sense that we are all here, we are all welcome,  and there is something for all of us to do to feel part of this family. 

It is not enough for me to SAY that someone is welcome. If a person is on my doorstep and I tell him he is welcome to walk in, but I don’t gesture, open the door wide, show him a seat, and offer him, at a minimum, a drink, my actions are in fact belying my words. He is not really welcome because I have not made room for him.

 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.' Matthew 25:40

Special Needs and Worship will be the next installment.