Supporting families with special needs
Have you noticed that certain cable television channels will play a film over and over again in a month? I sometimes wonder if they pay a flat fee to play it for the month, so they make sure they get their money's worth.
The show on one of the channels this month is The Martian. If you are not familiar with this movie, a crew of astronauts is on mars when one of them gets blown away in a storm, and the rest of the team leave him thinking he has died. He, of course, is not dead and then has to figure out how to survive alone and with few supplies until he can be rescued. It is very much like MacGyver on another planet.
As I was watching the movie it came to me; this is just like being a parent raising children with special needs.
Many of the big things we have purchased had to have to be modified to fit our family, adding bars to bathrooms, doors, and stairs. We bought our camper so we could camp and enjoy nature easily, we traded in the first one we had because it didn't work at all. I have an old jeep, and I keep a step stool in the back so I can get my son and short wife in the seat. When we bought our home, of course we had to love it, but we also had to make sure it functioned for our whole family or that we could modify it so it did. When our son went off to college, we stayed longer than most parents to make sure he had what he needed to get by without us. The school choice of a small school also meant he would not get lost in the crowd.
As parents, I think we have approached each stage of life with a readiness to modify and adapt to the situation. I also believe we have made sure those working with our family have had the same adaptability, assuring us that we are making the best of our unique challenges.
I see other parents doing the same thing for their families. I love seeing groups on Facebook and other places sharing information and tips on how they are adapting and figuring it out.
To all you MacGyver parents out there, we salute you.
Some people may think they know your family, or how you should parent. We say they don't know what it is like to be in your shoes. Our latest video, we try and explain a little of what they don't know.
Last week my son and I took a trip to look for an apartment for him to live in this fall. We are so proud of him finishing his Master’s and moving on to the Ph.D. Looking for an apartment takes on some extra meaning due to his cerebral palsy and his use of a mobility scooter to get to and around the campus. The school maintains a website you can peruse to find housing options. It also includes parameters by which you can narrow your search, like price, location and even whether or not the space is disability accessible. We made a list of the apartments he could afford, and a few he could not, and set out to see all of them over a three-day trip. I have to say that what these apartments mean by "accessible" varied widely from place to place. Some of them made me question how they even qualified.
The first high-end apartment complex we went to had a concierge and someone manning the door, so it would not be hard for my son to get into the building, it had spacious elevators that he could enter and exit easily. Most of the doors – to the pool on the 6th floor, to the meeting rooms and gym and the apartments, were manual and required a fob to open. These would be a little more difficult to manipulate. At least each floor was flat once you reached it. There were washers and dryers in each apartment for laundry and trash chutes on each floor. The problem with this option was expense. Top dollar got you lots of nice things, but he is paying his own expenses out of his stipend, and he still needs money to eat. If he could have lived on the free Dunkin’ Doughnuts in the lobby every Monday, we would have been fine; otherwise, we had to keep looking! We looked at others which cost just as much and found different results; one had electric door openers and one did not, one had wide halls and open floor plans to maneuver in, some apartments he would not have been able to turn around in. What baffles me is that all of these "expensive" options occupied new buildings, none older than ten or twelve years, so how did some of them get away with such poor ADA compliance?
Last night I was able to catch an episode of Speechless. If you’re unfamiliar with the show, it’s about a young man who has cerebral palsy, his family, and their adventures. The episode revolved around the mother finding out that her son’s school has a Homecoming bonfire every year at a very inaccessible beach, and giving the school grief about it until they decide to cancel the event. This, of course, upsets everyone else and makes life at school tough on her son.
The show sometimes goes over the top portraying what special-needs families go through, but there are moments when it hits the nail on the head. This episode made me think about the differences between advocating for my son and bullying others so that I can achieve what I think is right. I have always wondered about how best to state my case, and where the distinction lies between reasonable and unreasonable accommodations by others. I want my son to have every opportunity every other child has, but I am just not sure where to draw the line between walking away or charging up the hill and planting a flag in the name of what is right.
Eighteen years ago my wife and I stood in the doorway of a little classroom at our church hoping any children would show up for our new class called Special Friends. While we didn't have anyone show up that day, we did eventually start to have a regular crowd of friends, and our church program was born. At that time I heard an estimate that only 1% of churches had a program like ours. That seemed crazy if just under 20% of the children in the U.S. have a disability where were all the children?
Over the last month, I contacted the seventeen largest churches in our area to see if or what they were doing with special needs. Glad to say that the numbers were much better than eighteen years ago. Of those churches, four told me they had someone working with special needs in their church. I did have one contact me who is trying to figure how to start a group for adults at her church, but I also talked to one who was struggling with the pastoral staff who were giving them the "We are going in a different direction" speech. While that is an improvement over 1%, it still gives me a moment to pause. Most of these churches have over a thousand members some have over two hundred and fifty children in their Sunday school programs are you telling me they have no children with special needs?
To be honest, I don't believe you need a formal program, you need to be supporting the families that want to be a part of your community. What it does take is intentionality.
So how do we communicate the need? How do we share that we believe every church should be, if not intentional, at least attempting to meet the need of the community?
We believe it starts with us supporting the church. That is why we are spending time over the next few months contacting local churches and letting them know we are there to support them in any way they need. I am still surprised how many churches are unaware that there are resources out there that want to help them. We have interviewed many of them on our podcast about what they are doing. So many are working to support the churches in figuring out how they do ministry that impacts the families they serve in a big way, and they continue to make inroads. There are just a few questions I don't know how to answer.
No matter how many we contact, it will be impossible to get the other seventy-five percent to all of a sudden care or realize that this should be a part of their church without God putting it on their hearts.
How can we best serve those churches now?
For us, it means we will continue to contact them and let them know we are here, and we are willing to wait till they are ready to tackle how they support the whole community around them! We have no plans of ever stopping our mission until the last family is served!
