One of the most difficult aspects of having a disabled child is the isolation. I have never been a social butterfly but I never imagined I would have pretty much zero involvement in the community. This has been on my mind lately because Maya is getting to a point where whe wants to be out and about, meeting people and socializing. I had one of those magical days yesterday when Sam had school and I didn't have work. Maya and I took a walk over the to local park and she had a blast. She played alone at first and then with an older girl who took an interest in her. This is something I cannot do when Sam is home. The park is not fenced in and I can't rely on him to stay within a safe distance of me. Plus, there tend to be a lot of wrappers and straws on the ground and Sam has a compulsion to pick them up. If the weather has been damp, the park has huge puddles and Sam makes a beeline for them. He will happily jump in them and drink the muddy water.
I have been looking for a church lately. I miss the routine of going on sundays and feeling connected to a community. I heard about a Catholic church that is starting a "differently-abled" mass. I am not Catholic, and in fact take issue with a number of things in the Catholic church, but I am open at this point. I don't have to take communion. Unfortunately, their idea seems to be to have a separate mass during which people with disabled kids can attend with their children. Sam can't sit through mass. He would splash in the holy water, chew on the books, and all kinds of other things.
I contacted two UCC churches in the area since that is the denomination in which I grew up. Pastors from both churches responded to me quickly. They were both very open to having me come see the church and meet the congregation. Neither has a special needs program or any kids like Sam so while I will probably go and look, I don't know if either will work out. WHat do other special needs families do? Do they just stay home and remain invisible? I have asked around and not found any churches with accomodations for kids with severe developmental disabilities. There is a Jewish temple a couple of towns over offering to work with kids IEPs in the religious religious school classrooms but as with everything, I think Sam's severity is more than most people expect. He cannot be in a class with typical kids. And I am not Jewish - I am open for the sake of community but I would prefer not to change religion.
What I really want to find is a church with a nursery-style room for developmentally disabled kids with bean bags, tramoplines and basic sensory toys. Sam could "play while I sit through the service. I don't think it exists around here.
I am at a loss on this one. I realize Sam will not understand anything about church or religion but I don't like the idea that I HAVE to leave him at home and just take Maya. I DO want Maya to have exposure to religious education. I firmly believe that religion must come from within though and it will be completely her choice if she chooses to remain part of a church once she is old enough to decide. I just think it is important to learn the history, the stories and the traditions while one is young.
If anyone reading has a low functioning child, what kind of community activities have you found? or do you just stay home like we do?