This is a post I probably shouldn't write, but I will anyway, because it's on my mind so much lately.
Before Janey was born, actually when Freddy was still a baby, I started going to a church right near our house, The First Congregational Church of Hyde Park. I loved it there---I loved the minister, Jackson Smith, the building, the organ music, the hymns, the people. It was a very, very small congregation, and got smaller and smaller and smaller as time went on. When Janey was about 2, it closed and the church building was sold. Jackson died a few years after that. His funeral marks the last time I was in a church.
Even before the church closed, we had stopped going regularly, or going as a family. Janey was not yet full blown autistic then, but already at 2, she could in no way be at church without completely disrupting the service and making it completely impossible for us to get anything out of it. The church was too small to have a nursery, but even if it had one, I am pretty sure they couldn't have handled Janey even then. So either Tony or I went, or a lot of times, neither of us. It was sad for me, but I thought of it as temporary.
However, it wasn't. We tried another church a year or so after ours closed, and it was easily apparent that there was no way it was ever going to work. Janey can't be cared for by anyone without experience with autism, and she cannot be in church with us. It isn't a matter of her being fussy---she will SCREAM, run around, get completely hysterical. It's not fair to anyone there. There are too many noises that upset her, too much quietness, hard seats---who knows what, but it would be impossible. I read a book recently about a woman with an autistic son---the woman's father is a well known religious figure, and even she was never able to take her son to church or find a church that would work. That made me feel a little better. Churches are not set up to deal with autism, at least in a way that would allow the boys to go and allow Tony and me to listen to a sermon together.
I was never very strong in whatever faith I had. When I was going to church all the time, I felt very comforted by it, but I was never sure if that was God or just the ritual. Now, I am less and less and less sure I believe at all. I would not call myself an atheist. I haven't lost all belief, or hope for belief. I have tremendous respect for anyone who does have faith. I wish I did. But I don't think I do. Part of this is the question that everyone asks---why does God allow bad things to happen? Why is Janey autistic? What is the reason for that? It's a lot easier for me to think there IS no reason, or no plan, than to think it's part of a plan. I have a wonderful friend who tells me that often, God's plan isn't ever revealed to us. I respect that opinion, but I don't know if I believe that. Or if I do believe it, I am not sure if I liked it. Why would God make a plan that involves making a 6 year old girl autistic and retarded? And that is a mild sad thing compared to many other things I can't understand God doing---cruelty to children and animals, wars, children born with horrible diseases that will result in their death, and just all the meanness and horribleness out there?
I do differentiate between faith and church. My faith is not dependent on having a church to go to. But it would help. I think there is a huge unfilled need for churches that could welcome families with an autistic child. It would mean the world to have a church to go to that would have childcare for autistic children, and that would even find a way to include them. Janey could learn hymns. She could learn to repeat Bible verses. She could just feel the love that a good church can give. I have a dream of us all going to church on Christmas Eve. Janey loves the carols so much. I think whether she understood the Christmas story or not, it would make Christmas mean something to her. But I don't think this is going to happen. I've asked around, done internet searches, even had my mother's minister research churches in the Boston area, all in vain, to try to find a church that might be interested in working with us. Almost all churches would welcome us, but I want a church that would embrace us, that would take good care of Janey while we were at a service, that would love her. I want this, selfishly, even though I am not sure I believe in what churches are there for.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
5 comments:
I saw your post because another mom with an autistic child reposted it on her wall. I felt your pain as I read your words. I don't live in the Boston area, so I can't speak for what is available there, but our church has recognized the needs of children with special needs. We offer a class for those who function best in a self contained class and we have "buddies" that accompany children who function quite well in a mainstreamed environment. Don't give up! God does love you and your precious little girl. God doesn't punish us with bad things, He offers us hope and grace to make it through difficult situations. Your little girl may be different from the "norm" but she (and you) have worth and value. Reach up to God and he will reach down to you!
Hi!
First of all I want to apologise for my bad english, but I´m not an english-speaker. I reed your blog and I like it. I study social work, but I don´t know so much about this illness. What I know is that this child used to be very intelligent. I think that your blog is very useful for those who want to know more about this illness, because you explain how a family feel this situation and things like that. I thank you for that. Be happy!
Hello. I saw your post through a repost by another mother of an autistic child. I formerly assisted in her son's Sunday school class, before I moved out of state. The class served children and youth with special needs. It worked well. I can understand your frustrations with attending church, for my own son, age 6, had difficulty attending church, Sunday School,and childcare. A few months ago he started sitting through services, as he colored or held toys. A few weeks ago he started attending Sunday School without me being in the classroom with him. Childcare, now that is something we are still working on, but I am sure he will get to where he can tolerate short times in childcare as well soon. My son was evaluated and we were told he may have mild Asperger's Syndrome. My sister, who is now 50 years old, is severely mentally retarded. So, I grew up seeing my parents make decisions for my sister's needs. My sister enjoyed attending church. Despite all the suffering my sister has endured with her health issues and physical and mental limitations, she definitely has a true faith in Jesus as her Lord and Savior. When my mother died, as well as other family members through the years, my sister's faith in Jesus and Heaven gave her tremendous comfort during her mourning. I recommend you read the play "Shadowlands," by William Nicholson and watch the DVD "C.S. Lewis Through the Shadowlands". C.S. Lewis reveals his questioning and faith that he endured through, the death of his mother when he was 8 years old, his years of athiesm, the suffering of his friend (later wife), and death of his wife of 3 years. If you look up C.S. Lewis' books on Amazon.com, you will see books he authored that address the questions of why God allows pain, war, suffering, etc. He was a brilliant writer and became a man of strong faith in God and Jesus the Savior.
Yes, C.S. Lewis was a great writer. He was also a terrible anti-Semite, but hey, we all have our faults.
You know how I explain why God allows sucky things to happen? I think it's because God is eternal and the unpleasantness we go through in life is temporary, no matter how bad it feels while we're going through it. Eventually we die and move on to something better and the sucky stuff that happened when we were alive doesn't matter anymore.
At least that's what I think.
I've read some C. S. Lewis, and I can be almost convinced when reading him. I truly wish there was a church like yours around here, Pastor Don! I would really like some faith around about now, but it just isn't there for me anymore, in my heart. I can understand that God isn't punishing me, or that "We'll understand it better by and by" but in my heart, the feeling isn't there. I feel like I should be able to get it back without a church, but I can't. I guess I also feel kind of an anger that no church around I can find values Janey enough to make a situation where she would be welcome. Or I should say, no Protestant church, which is what I am. I know there are many, many programs that would accept Janey in the Jewish faith, and the Catholic church in this area is doing wonderful things for special needs kids. But I am not ready at this point to change religions. I appreciate the comments and thoughts!
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