Establishing a shadow ministry would be great. Many public schools will have a teachers assistant to "shadow" these challenging kids in the classroom. Many times in the last seven years, Caroline has left our church service suddenly, to go wander the halls or find a quiet room. A shadow for her would have been fabulous, someone other than the parents, to just follow her and make sure she was safe.
But even better, we would have loved to have had a separate room with a closed circuit tv of the service, sound-proof, where we could have taken her, while she spread out on the floor, or at a table to draw. This would be wonderful for a family of a child with an aspergers, or autism, or one diagnosed as PDD or ADHD who really can't sit through a service. The parents wouldn't have to miss out and the children wouldn't disturb others, which can be a big problem and source of embarrassment to parents. Some have said that they want them to be in the service and free to make noise, but really it is the parents who are suffering, unable to get much of anything out of the service because they are too distracted. Often churches have a nursing mom's room set up like this, and it's probably time to provide this type of service to our special needs population, not to shutter them from the congregation, but to ease the burden of the parents.
I adamantly think Sunday School teachers should receive special training for handling these children in class, and also have a shadow to assist them if the child needs a quiet time out in the hall or whatever.
Youth leaders should definitely be informed about these brain disorders and what these middle school and high school kids might be struggling with, more than the norm. Caroline has never felt like she has fit into our middle school group because of all of the trauma she has been through. She feels that she sticks out like a sore thumb. Thankfully she has some adult women reaching out to her and spending time with her when they can.
And whenever a child is hospitalized for severe depression or mania, it is every bit as stressful as if your child was in a car accident, or had a terrible illness. Meals would be nice, because I know that my mind freezes up during those weeks and I just can't cook, do laundry, clean. Nothing is normal. I call it "zombie" mode. And you spend a lot of time commuting back and forth and talking on the phone to all kinds of doctors, psychologists, social workers. I don't think many people understand the impact on the family when a child is in a mental hospital. Your heart is ripped out every day, especially when your child is pleading with you on the phone to come home and you know you can't bring her home yet. These are the times when I really do scream out loud in the car for God to HEAL MY DAUGHTER!!!! I trust Him, but I don't understand his plan.
My final thought is that I have often felt people pull away from my daughter and from our family when they don't understand (or don't want to), feel uncomfortable around our daughter, or think that she is too unpredictable that we can't be invited over to dinner, to the beach, or some outing. I know what they are thinking, that they don't know what might happen if they are around her, but it is hurtful nonetheless. I have definitely felt far more isolated since her diagnosis.
Thanks for asking. I hope that someday these suggestions will be the norm.