From this post, you will deem that I’m a Christian. So, where you see church…insert your worship site of choice be it synagogue, mosque, temple, whatever and where you see God, insert your deity. Because, this is not a Christian issue, it’s just written from my perspective.
If you know me, you know that I’m the parent of a child with significant disabilities. He’s 20, but still my child. One of the most frustrating experiences, well, beyond Disney World and Sea World, (that’s another post) is the time we spent at church.
Back in the day, like 17 years ago we were part of what many consider a mega church. It was huge. There were restaurants in the church and they even had an entire program to support children with special needs. It was perfect.
My son needed surgery around this time and there was also an alternative therapy I really wanted to try with Jack and those cost a lot of money (lots of dough!). I had reached out to our local Jaycees group and they were more than happy to help out. They decided they wanted to throw a bowling fundraiser for my son. (I’ll forever be grateful to them for their kindness and support!)
I was so grateful and pounded the pavement to market the event. I reached out to OUR church. It was a place that I was at every weekend. They knew my kids in the children’s church, we were not strangers. I asked if they would post our flyer on the community wall. I received a polite email back saying, sorry, not sorry, essentially, in the kindest possible way. I was angry.
Now, I can understand that a church that size probably couldn’t do this for everyone. I get that NOW, but at that time, I was very turned off. This was a place that I gave money to, made purchases at and supported weekly. I thought the church was a place that I could turn to when I needed help. I thought the church was a place of community.
I speak often of turning away from the church, God, all things related and also of the moment I decided to ask God back into my life. That whole story is for another day, in fact there’s a book in the works to tell our story. But I will tell you that the moment I received that email was the beginning of my questions about church, God and what it all meant.
I couldn’t understand how the church could turn me away when I needed help, when my child needed help…isn’t that part of the reason we come together and worship…to build community and lift one another up?
Many years have passed since that happened and I have made my peace with it, but I still have major issues with the church, not God, we’re all good, but with the idea of church. Honestly, it’s 17 years later and outside of mega churches, I have yet to find a church that would truly welcome my son. Sure, they’ve offered to let us sit in the crying room. They’ve offered to let us sit alone in the community room. They’ve offered special sensory friendly events once a month or at holidays. That is not inclusion!
As I sit back and think about the issue from the perspective of the church, I get it. It’s hard. Heck, there are still some schools who fight inclusion! How can a church possibly create the opportunity to include children or adults who may be loud, do things society deems as abnormal and have needs well beyond the typical child and keep their parishioners happy? I have ideas…lots of them.
I’m still angry! I’m not going to lie. I want to go to church. I want my child to worship. He is a child of God! He should be able to worship his Father.
We need to figure out a way. For the children, for families and for our communities, we must figure out a way!
See, families of children and adults with disabilities need the church and its community as much, if not more, than most people. We experience isolation daily. We lose friends, family and our own identities when our whole world circles around this little human given to us by the very Creator that is worshiped in the church that doesn’t know how to include us or just, frankly, doesn’t want us there. Let that sink in! The human created by God is not made to be welcome in the worship site of that very Creator. Hypocrisy at its finest!
If you are reading this, you probably know already, but, raising a child with a disability is not easy.
-Respite workers are few and the pay is low so finding quality help is difficult, especially in non-metro areas.
-Often as children age, parents must choose between careers and caring for their children…children win, of course. This adds financial strain to families.
-Some studies report a divorce rate of close to 85% in families of children with disabilities.
-Studies show that parents of children with disabilities display many of the same symptoms of those struggling with PTSD.
-Depression, anxiety and stress levels are remarkably higher among those who have children with disabilities.
Do you understand why the church is so critical to our families? The church was once the center of the family. But today, there is a large percentage of people who cannot even attend and that leaves me to wonder…would a God who loves us create a situation where we could not worship?
I tend to think our special and wonderful children WERE created, not to be hidden away or shunned from church, but, instead to change this world. I believe that churches want to be inclusive but don’t know how. I believe most do not understand disabilities nor do they understand the impact of having a child with a disability.
My mission is to change this. Soon…
More to come on this topic, but things must change. We all deserve these things to change.
Here’s to inclusion, progress and advocacy!
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Disclaimer: There are exceptions to every rule. Children and adults with disabilities are people with their own individual needs and desires. The ideas and advice given in this blog are for your consideration only and should not be taken as legal or educational advice, as every single situation is different.