I was talking with my wonderful editor, Ellen Kadin at AMACOM Books, a couple of days ago. She referenced the stress of my life with Billy Ray. I said to her that she probably had as much stress as I do. She said no way. Certainly the stress of parents whose children have various special needs including combination of diagnoses Billy Ray experiences (Down Syndrome, Autism, ADHD and Biplor) is different than that of the average family and probably more extreme.
Up with Billy Ray in the night, my mind wondered to subject of parents who become so desperate they kill their kids and those who deal with the stress better than others. It seems that part of it is the way we as parents receive and accept support. It would be easy to just believe no one understands and give up. The truth is no one really does understand until parents are able to communicate their situation to others. The documentation system helps a great deal.
Most people want to understand but it takes learning to communicate with others in ways that they can receive it. The response will depend greatly on the approach. If we are militant in approach the support is less tolerance than if we are able to say that doesn't work for my son because he responds this way or that. Disabilities have been somewhat a hidden secret that we didn't want to share. Openness about what we experience brings understanding, isolation defeats it.
Support systems are vital but sometimes hard to accomplish. In the old days when we got tired of fighting the school system, there seemed to be no help from governmental agencies and the doctors were admitting their frustration with my son we lived the life of desperatation and isolation. In that hopeless we can get into survival mode and do some foolish things just trying to survive day to day.
Returning to my faith was a major turning point for us. The strength that comes from the lighthouse concept which I discused in an earlier post and is explained on one of my websites www.lighthouseparents.com/Lighthouse_Concept.html has brought endurance I never experienced before. Then deciding that we needed the church family was another. It was not easy to find a church home because Billy Ray can be a disruption in services. It meant creating that church family. When you are tired and stress that it is difficult to do. I just called pastors and got bold enough to say this is what we need in a church family can your church accept us.
Presently the support system in our small town church is incredible. This past July, Billy Ray was in the hospital for 13 days, 9 days of which were in Critical Care on the ventilator. Pastor Richard and his wife, Denise, at Grace Fellowship Church of the Nazarene, were there whenever I called and often when I didn't call. Denise called almost daily to see if there was anything we needed or how they could support us. Many times when we would come out of the CCU there was someone from the church in the waiting room wanting to check on us and assure we didn't need anything.
One day the volunteer for CCU who assisted with getting us into see our family members in the unit was telling us about RV spaces the hospital made available next to the hospital. I just spaced it because we don't have an RV. When some ladies from the church came later my sister-in-law mentioned to them that we could use an RV. I have to admit I was bit embarrassed and would have found it hard to ask for it myself. That same night Denise called to say that it had been mentioned in ladies prayer meeting. One family was loaning an RV to us and another was hauling it to the spot the next day. What a difference it made. Sometimes I wasn't there many hours of the night but every morning I could make my own coffee with the Irish Creamer I love.
Since he has been home from the hospital, Donna (otherwise known as the cookie lady) has been making Billy Ray high fiber cookies every week to help in his difficulty with constipation. He will eat them much better if someone other than Mom makes them even though the recipe is the same. Now that he is diabetic she is more than willing to make them in whatever way he needs once we are ready to resume that.
Support is more likely to happen if we are open about our needs. That doesn't mean we go begging for help. In the above examples, I didn't have to even ask. Because we were known and loved as a part of this church family there were there for us. It reminds me a great deal of the church described in the Book of Acts. When one has a need the others help.
It does not always need to be a one way street. Billy Ray contributes to the church family in his own way too. He needs vocational activities that are adapted to his strengths. He enjoys things like emptying the garbage and vacuuming. He goes to the church to do those things as he is able. He is proud of that accomplishment.
A cute story about his activities at the church happened recently. I happened to be there in the office when his support staff brought Billy Ray in to do some tasks. A men's Bible study was going on. I heard him interrupt the men and was embarrassed. I told the support staff not to let him do that anymore. However, I heard from wives of some of the men, our pastor and others how much that meant to them. Dave told me that they discussed how all that Billy Ray wanted from them was a hug and he hugged everyone of them. They thought that was special. He is an accepted part of this family.