When Your “Family” Abandons You: One Spectrum Parent’s Journey of Spreading Awareness

Let me tell you a little story.

A couple Sundays ago, local church members came knocking on our door. Now these individuals were not just any person from the community. No, each of them were people that I would consider as friends. These 4 people were doing community outreach. They asked one simple question, “What is something that our churches are lacking or need to do better on”? In that instant, a single thought popped into my head. I kept asking myself should I say it or should I not. Then one of the 4 people looked at me and said, “Come on Heather, I told them you’d have a good answer.” I looked at her and said remember you all asked for it.

In that moment, I began telling them a story that is still so fresh in my mind and in my heart that it makes me cry just to think about it.

You see, about 2 years ago my family were all avid churchgoers. At that time we also had a 3 year old little boy who we knew deep in our heart was on the spectrum, but he hadn’t yet been diagnosed. Church services usually ran an hour and a half and he was in the nursery during that time. Most days he handled it like a champ, but there were days when that hour and a half was too much for him to process. On those days, he would end up having a meltdown before we could get back there to get him.

For those simple reasons, my husband and I started taking turns staying home with him. In time, my husband took on the responsibility more and more and our son came to church less and less. There were still occasions that we would give it our best effort, but it would almost always end up in a gut wrenching meltdown by the time it was all over and done with.

Then one Sunday we decided to brave it and bring him again, crossing our fingers that it would go okay. As I am sure you have guessed, that was not the outcome. He ended up getting overwhelmed and hysterically crying. The following Sunday I was confronted by a member of the “Nursery Committee” that stated that from now on they would have a member of the church, who was also a mental health professional, sit with our child alone in the second nursery on days that we decided to bring him. This was also the point that I am sure you can guess, we decided that our son would never step foot in that church again.

To say that I was hurt is a gross understatement.

My heart and soul was completely shattered. I felt abandoned by the people that were supposed to have my back. I had genuinely felt like these people would be the support I would need to get through anything prior to that fateful Sunday. But, I continued to go for quite a while. I prayed that the Lord would somehow use me to a catalyst for change within the church. That somehow I could open up the hearts and minds of the church members to see that children with mental disabilities were just as valuable as everyone else and didn’t need to be isolated, they needed to be loved.

As time passed I could see that the change I so desperately hoped to see was not going to happen within those walls, or if so, I was not going to be the person that made it happen. So I stopped going to church, as many Spectrum parents do. We feel isolated. We do not want to interfere with other people’s experiences and we do not want to put undue stress on our children. So instead of making everyone else uncomfortable, we simply step back and put our own needs on the shelf for another day.

So What Can You Do?

This brings me back to present day. These friends asked a simple question:  What is something that our churches are lacking or need to do better on? My answer was just as simple: open your hearts and minds to these sweet children that God wanted on this planet. Learn to notice the red flags, the triggers, the ticks that make each of these children unique. Let these children, and their parents, know that they are loved. Tell the parents regularly that you are there for them, whether it’s just to listen when they’ve had an especially hard day or to lend a hand running an errand that they may not be able to get to when their child has reached the breaking point.

We Can All Be Part of the Solution

Ask any Autism parent and they will tell you that at some time or another they felt completely alone. Those moments may be fairly regular for some, while fleeting for others. I could have just sat in the corner angry about the situation that I went through. And trust me, I did for a while. I could have kept it to myself and never been part of the solution. But instead, I made the conscious choice to step out of my comfort zone and tell our story.

I truly believe that the only way that we are each going to learn our place in this puzzle we call life, is by learning from each individual piece, especially the unique ones. So now I challenge each of you reading this, take the time to learn about what Autism is. And maybe, just maybe, you can make a connection with someone in your community whose life has been touched by the spectrum.

If you or a family member loves someone on the spectrum I would love for you to leave a comment below or simply leave an email address and I will email you so that you can have another hand to reach out to when the going gets tough.