Practice: Does your religious organization provide for the spiritual

[Ilsa]

needs of families in your group who have children with disabilities? I have asked that of some local people, and they immediately say "Yes", but then realize after a chat that they don't even come close.

I am the mother of a seriously disabled child (autism). He's smart, and manipulative, and not a good candidate to quietly participate in "sacraments". ;) He would be quite noisy and disruptive in a worship service. He is too big and possibly harmful to crying children in a nursery. So my husband and I have dropped out. He volunteered to stay home with the kids while I went to church, but I really don't feel like going alone. I cry too much and get mad.

One father I spoke with today did his religious duty and fathered five children, four of which appear to have serious autistic problems themselves. He and his wife attend Mass separately or not at all. The kids, he said, cannot be taken. I wonder if his priest or anyone has bothered to ask how they could help them. One person I spoke with in the local Catholic Diocese said they had programs for disabled children, but not for younger than teenage, and not for seriously communication-social impaired children. In other words, too bad. They didn't even ask me what would be helpful.

I've given up. My church knows my situation. They watched me attend alone off and on for several years, frequently staying behind to visit, cry on a shoulder or whatever. And no one ever calls. I get the weekly bulletin to pray for people with acute illnesses and other difficulties in their lives, but not my child. Other than that, the mail I get is for the annual pledge to support the church, which we cannot afford with our child's medical bills.

1 in 167 is getting diagnosed with an autism spectrum disorder. The families of these children probably need help and respite if they are going to continue their participation in local religious activities. If you want these people as part of your ministry and congregation, then I tell you, we are out here. We are too proud to beg, but we might respond to an offer for assistance, such as professional respite, special classes for our children, etc, if asked. In the meantime, I am not taking my younger child, the one without autism, to Sunday School or church, either.

[ayeshahaqqiqa]

1. Our practices, by and large

are mainly individual in nature; group practices, such as zkr, are open to anyone. I find it interesting that you mention autism, because one of the people who comes to our Dances of Universal Peace meetings has autism. He has found it helpful to do the Dances.

On another note, my doctor uses a holistic approach to autistic children. We told the parents of the young man about her, they have taken him, and have found her therapy has made a remarkable improvement in him-he can sense emotions, can interrelate more with others, and can think (his words-I can think now!). I know that the Dances were the reason everyone connected, and I praise The One for it.

[Ilsa]

2. How old is he?

Is he generally quiet, or does/did he have an abundance of behavior problems (sometimes resembles Tourettes)? Is there concern about outbursts and disruption?

We tried the holistic thing. Dietary intervention, homeopathy. No help.

Anything involving "dance" in any form is a pretty good deal for our son.

[ayeshahaqqiqa]

3. Middle teenage years

He was 12 when he first Danced, and he really liked it and the drums, which we let him play in the center of the circle. He was generally quiet, though I've been to dance meetings where the youngsters were anything but!

Just another question-have you used sauna therapy? My doc says that one problem with some autistic kids is an inability to get rid of toxins the usual way-she uses far-infrared sauna therapy to help folks get rid of toxins safely.

[Ilsa]

4. No, we haven't done that. I've tested his hair for toxins and he is negative.

That is really cool about the son of your friends, and yes, I am also grateful to God or The One for his improvement. These cases are so varied, but I think they generally point to the fact that we have a deteriorating environment.

My son would enjoy a class with other kids except for two things (and this can be typical among many autistic kids): the noise of the other young feisty kids would bother him (sensory integration) and he would be likely to strike out at another child. He has sent one child to the doctor and attacked him more than that. Alot of these kids need one-on-one help from experienced people in paying attention and anticipating and intervening when undesirable behaviors come up.

[ayeshahaqqiqa]

6. As I said, my doc

takes care of austic kids from all over the country. From what she's told me, they are all different. I know she's had some come in that sound a lot like your child. Doc spends a lot of one-on-one time with compassionate listening that seems to help-think she also uses Entertropic Therapy (a touch therapy that moves blocked energy from the body).

[rug]

5. I don't know which diocese you're in but Austin deals with it at a diocesan level.

http://www.austindiocese.org/department_home.php?id=23

[Ilsa]

8. No, I am not in Austin and I am a Protestant, and willing to

switch to another Protestant faith for a better situation and if they are progressive (for example, I would not join the Evangelical Presbyterians or Missouri Synod Lutheran).

The link gave more of a mission statement, but little detail about what they've created in ministries for developmentally disabled persons or their families.

[JerseygirlCT]

7. I'm sorry. That's a real shame

Our church is small, but the chapel area (sort of off to the side) has become the unofficial children's area. If you sit there, you're expected to expect some disruption.

And certainly, you and your child would be embraced, particularly once we knew that he had special needs.

We also have 2 services. Since Sunday School starts right before the second service, families tend to attend that one. Older folk who get itchy at any interruption tend to attend the 8 am service.

Have you looked around for another place? Spoken to the clergy about the situation?

I know our rector would make it a point to make you feel at home. As would almost every parishioner. In fact, the danger is more that you might feel a bit overwhelmed with attention!

[Ilsa]

9. Yes to both.

Have you looked around for another place? Spoken to the clergy about the situation?

Yes to both. On one occasion, I took my child to a Vacation Bible School class in the summer because I heard they would provide a trained aide to assist him. We were there before the aide could get there and I couldn't get anyone to help me distract him for even ten minutes while I took care of another problem. The others made me feel like I shouldn't have brought him (Sorry, we need to make KoolAid two hours before the kids have break."). So, I blew them off. They are the only ones I have met that have bothered to determine what it would take to have such a child amongst other children. It can be difficult and dangerous -- these kids have a tendency to be hyper or run away or even hurt another person. Communicating with them is difficult.

The new pastor and a number of elders know about our situation. I used to be a Sunday School teacher. It doesn't seem to be a priority.

[JerseygirlCT]

10. That's really sad. And even more so for a church

One wonders where they lost touch?

[bryant69]

11. That is really sad

I suspect it's pretty common, which is a shame. I'd like to think my church would do better - but I can't honestly say that I know they would.

Bryant

[Ilsa]

12. It isn't a matter of being "welcome". It is a matter of being aware

and prepared and offering assistance, such as with a special child-sitting service at the church staffed by people who know what they are doing. But that takes training.

It would also be very helpful to alot of people to offer some sort of respite care so couples can take care of errands together, have a meal out together, without the standard 15 y.o. babysitter, who probably isn't up to the task. This would be a real ministry, just like offering respite for someone who is caring for a chronically ill family member.

[NMMNG]

13. One of the churches in my area

had an "exceptional learners" class that I used to take my clients to ( I work with developmentally disabled adults). It was a Sunday School class that ran just like the others but was geared towards their cognitive level and was accepting of their "issues". I don't know if they had a similar class for disabled children however.

Perhaps if there are other children in your church with developmental disabilities the church may be willing to have a class just for them. If you ask around and a group of parents present the idea to the church it might just work.