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.
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?
When our organization was founded ten years ago, we set out to fulfill what we perceived was a need. Hence our choice of name: Need Project. We saw that families who deal with special needs are in a unique situation, and many organizations that support families, one of which I was working for at the time, do not understand the issues they face. Being such parents ourselves, we wanted to either find or create resources that could help special needs families to thrive, promoting strong marriages, assisting people in hard times, and building reliable, resilient communities. This led us in many directions, spurring the creation of unique resources like our podcast. Interviewing experts, parents, and companies that offer support to families has allowed us to meet some incredible people and share their experiences with our audience. To date, our podcasts have been downloaded over 27,000 times, not including those who have listened to them directly on our website. Our other resources, like the local support search page and website links, have seen 4600 monthly visits on average.
While I am thankful for those numbers of visits to our website, what I am most grateful for is the reality that lies behind them. Those numbers tell us we were right; there is a need in the special needs community, and there are things we can do to help meet that need.
At the beginning of this year, we sat down to reflect on all our different initiatives, but also to look to the future. We took the time to talk with others and seek input regarding where we should be headed as a ministry, and where we could most effectively allocate our efforts. I think it was important to look at every project and resource we currently maintain. It isn't that we believe the programs we have been pursuing aren't good. Rather, it is more about deciding what we could be doing better. Where do we think we can make the biggest difference? While we came up with many great ways to help others more effectively, we want especially to invest in one project which has been on our minds since the beginning of our ministry. We believe it could be the most impactful thing we have yet done.
While parents may deal with different issues related to a specific diagnosis, there are common problems that connect all our families, marriages, kids, and the faith many of us share. We have started to conduct interviews with parents, asking questions about the struggles they face and the wisdom they have learned along their journeys. I believe we can learn from each other as a community; from failures and triumphs both. While we are unique in many respects, we are also all in this together. Since we count you as friends and family, we wanted you to be the first to see our new project, Parents to Parents. We are creating a video series in which parents share their experiences and insights on various subjects. Watch a short preview, featuring a few of my friends as they discuss their interactions with their local church:
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!
I was having lunch with a friend awhile back. He asked me how Need Project was doing, and I started to tell him what we were up to. After I laid out everything we were trying to accomplish he shook his head and asked me a question, one that I’ve answered before but hadn’t had to respond to in quite some time. “You’re very passionate about Need Project,” he pointed out. “What made you start it in the first place?”
This moment stuck with me because of the book I have been reading lately, which deals with this very question. It is a business-based book, but its premise applies to ministry as well. Its thesis is that when businesses start out, they worry about the wrong things. Typically they focus on the what; what they do. With non-profits this takes the form of our programs, what we are doing to help people. The book, on the other hand, suggests that the most successful organizations start with the why. Why is it that we do what we do? According to this author, if we know the why it will motivate us even when times are tough. It will allow us to focus on our goals while others may get off track chasing things that don’t matter. The day-to-day evaluation of what we do is important, but when our actions are driven by an overriding why, this principle becomes the motivator that makes everything else happen.
This made me stop and spend some time in reflection as to why I started this ministry, and why, after eight years of ups and downs, I continue.
If you know my story, you know our first child was born two months premature. Over the next few years we slowly learned about his issues, and came to grips with his eventual diagnosis with cerebral palsy. As a young dad this upended my whole world. Call it foolishness, but I had just assumed everything would go according to plan, that everything would be easy. I was not prepared to raise a child with cerebral palsy. The years of surgery and recovery, the births of our other children, which were equally traumatic, all of this has worked to mature me. What I know now, twenty-three years later, is that even without a disability in our family I was foolish to think everything would go smoothly or according to some grand design of mine.