Saturday, September 11, 2010

In Search of Community

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?


Stranded said...

Yes I feel the same (as in your last paragraph). But you know just because someone cannot understand abstract concepts of nourishing the soul, and God is omnipresent and having faith etc etc, does not mean they cannot "experience" or benefit from it.

All Ramadan I prayed aloud in Khaled's room. I usually sing him to sleep, but it would get so late waiting for him to sleep and then starting prayer that I just told him to lie down and mummy going to pray and he lay in be and listened. It was calming for him, he slept. At the mosque he experiences the peacfulness, the familiarity of the same prayers, when it is not super crowded of course.

He has also memorized several bits of my prayer and wants to imitate me.

He is not under any obligation or religious accountability before God because of the nature of his disability, but you know you may find some aspect of the faith or its practice that Sam can benefit from or just enjoy.

Singing, memorizing (KHaled likes scripts), maybe a routine, maybe even a particular church where he likes some stuff.

Like Khaled loves the mosque we go to because it has an abundance of fans and hand driers.

It has been hard to find a place where 1) the people will be accepting 2) there is stuff to keep them occupied and that can always change 3) you also feel relaxed.

Keep looking!

I also found a women's gathering, where they meet once a week in a large room inside the mosque and discuss faith based topics while the kids run wild, eat off the floor and scream to their hearts content, no one does anything to stop them. I love that group! :D

Tara said...

Wow, I was just thinking of this exact issue this morning as I drove past "my church.". I use quotes because I haven't been through the doors since the twins were born almost 5 years ago. I too miss that bond with the church, and the only option seems to be leaving my daughter with Autism at home with my husband, and likely my older daughter as well because she is in the process of being diagnosed. The rotation of parent volunteers who don't know my kids, and frankly probably don't know which parents they belong to, and might let them leave with anyone, doesn't sit well. Going without the whole family doesn't sit well either, so we do nothing. Not ideal. Sorry for rambling...just wanted to let you know you're not alone.

AutisticWisdom said...

This is a tough one. Alanna is just about to transition from a nursery/toddler setting to a more structured class at church. We had considered putting an assistant for her specifically but most people in the children's ministry don't think she would need it. We'd have to try it out to see. Most people have been very open about learning how to talk to Alanna, her PEC book and how she is progressing.

If Sam can't be integrated with kids his own age, I wonder if these churches would be open to having a special room for him. You could bring some items for him that he likes; if possible, they could be "church" items only so he is excited to go. Then you would have to talk about getting a worker in for Sam. I'm willing to bet a lot of churches would do this for you, but even if a volunteer could not be trained, is it possible to put in a respite worker (that you supply) for this purpose?

As for special needs churches I know they exist but they are not common. Finding a church is difficult enough without worrying about special needs care! I think you may be off finding a great church with the community you seek and see if they can accommodate Sam. As for leaving Sam at home I understand what you mean; we believe it's important to go as a family so we have had this discussion a few times too. Luckily for us, Alanna is probably not so delayed she cannot be integrated into her peer group with some support.

Once you get the room setup and a worker or two involved, maybe other kids will even come play with Sam!