Wednesday, January 19, 2011

Church and special needs

The reason I asked about your church experiences, is because I have read that a large percentage of families with special needs kiddos end up dropping out of church all together. I have wondered why this is exactly...Is it because the church is unaccommodating, unwelcoming, or unprepared, or is it just that it becomes too much trouble to get out the door with your family every week? Or because you end up spending the whole service in the hall or the cry room or the nursery anyway...You might as well have just stayed home and listened to the sermon online in your PJs in the first place.

Thanks to those who left comments. I loved to read how some churches have gone above and beyond to minister to special kids and their families. I love the idea of personal buddies, and matching mentors to kids, and allowing them to participate in 'normal' Sunday School activities, and even having opportunities to greet or usher! How awesome is that!! I can just picture Joseph and Ava at the doors of church greeting someday!

And to those who have not had such positive experiences, I am sorry. We have had mixed responses from people. Many times we have walked down the halls wondering who is going to be our worker that day, and hoping that it is so-and-so who has an Uncle with Down Syndrome. Can't you immediately tell who loves your kids and who doesn't?

We haven't been to a church with a specific special needs ministry so we have put Joseph and Ava in with the 2 year olds as that is about where they are developmentally. But I'll be honest. We always worry about how big and strong they are in comparison to the other kids in there, and we are always praying they aren't in there pulling hair or shoving, and hoping we aren't despised by the other parents. I wonder, do the workers feel burdened by our kids and should we be in there volunteering instead of enjoying the luxury of sitting through a service? And Zoya. How would other parents feel to know the truth about her, and should we keep her with us in big church, just to be on the safe side? And really if you think about it, it sure is a lot of trouble getting to church without anybody wetting their pants or disrobing or pouring milk all over themselves right before you leave or on the way, let alone on time. :) When you are able to pull all of this off you almost feel as if you have earned the privilege of sitting in church without your kids and without feeling guilty. But then you feel guilty when they announce from the pulpit their desperate need for volunteers in the kids church, and you just can't stop wondering what is really going on in the 2 year old room while you are trying to listen to the message anyway.

We visited a new church the last couple of weekends. Last week, the staff had a meeting to see how the church could better reach out to families like ours. By the next Sunday there was an note in the bulletin requesting volunteers to work one on one with special needs children. I got an email yesterday saying that 10 people volunteered and were excited to be a part of it! I was blown away. The children's church director said I would be getting a call this week to see what our needs are and how they can reach out to other families like ours. Wow! Now that is God's heart and a very necessary ministry! I have talked to so many families who would love to be more involved and want to feel more comfortable at church. Parents whose kids are overstimulated too easily, parents whose kids make a lot of noise and a lot of messes, parents whose kids are wheelchair bound or incontinent or have severe food allergies or who do not know how to display socially appropriate behavior. It would be a wonderful feeling to believe that your kids' caretakers are genuinely happy to see them each week (as opposed to wondering if they're saying to themselves, "Boy I sure do hope the Urban family decides to skip church again this week!")

(NOT that we have had any really negative experiences at all in previous churches.  I just want to add that for the record. Just mentioning the thoughts that go through the minds of moms like me every Sunday. And by the way we are only church shopping because we really need to find something closer to home).

We have been totally TOTALLY blessed with wonderful babysitters. We all were super sad when Christina, our favorite babysitter, grew up and moved away to college. We had her for about 5 years.

But then Emma came along and she has been just as awesome. We LOVE Emma!!

I stole this from her facebook page. As you can see Emma is very popular with kids.

Sunday night Emma took the littlest ones to her church where she volunteers in the preschool so that we could have a quiet night out with the big kids. Hope had the choice to come with us but without hesitation she wanted to go with Emma!

We had the most amazing, peaceful.....QUIET and stress free dining out experience with "just" three big kids at the Cheesecake Factory. Nobody threw their bowl, spit their food out on the table, hollered loudly, or tipped any chairs over. And nobody grabbed the waiter's crotch! It was truly a heavenly experience!!! 

Then we jeans shopped and people watched at the mall. Wow,it felt like being in a 'normal' family for once. :)

It was a great night for everyone, I think even for Emma!
I hope this post will help someone see how much these kinds of little things mean to families like ours. Maybe you can do the same for a family in need in your community or your neighborhood or your church. Families like ours really see the heart of God when people reach out to kids like ours!


Anonymous said...

Hi Charissa,
I hear your heart with this issue. I also see how God brings in the right people when we ask him. How special Emma is. My thought is that many churches don't realize the need for special volunteers for these assignments. Like me...being single it never occurs to me to work in the kids I'm thinking awareness is the key. There are many special people out there there are looking for a way to help/minister, and posting the needs on the bulletin board like your church did is a great first step.
SO glad you enjoyed a stress free evening. You deserve that at least once a week!
Love you guys...all of you,
Aunt Sharon

Leah said...

There is a church in our area who has an Angel Outreach program. Not only do they minister to those families who come to church and have kids with special needs, but also those who have a special needs child or adult they're caring for who are homebound. They some of their families had stopped coming church because they had a child at home who wasn't able to leave the house. The parents either stopped coming all together or were coming one at a time, alternating weeks. The angel program trained volunteers (they were often already RN's or LPN's who volunteered their time) to stay home with the child so the parents could go to church TOGETHER and be fed as a couple!

Jolene Philo said...

The Inclusive Church is a blog full of information for churches about how to start special needs ministries. The URL is:
My blog, also provides resources for parents of kids with special needs.

Hope this information helps you and others!


Anonymous said...

"...And nobody grabbed the waiter's crotch!..."

Oh my goodness! *LOL*

I take it this has happened before?!? Do tell! *LOL*

Charissa said...

Thanks Jolene, I will definitely check out the link!
And Anonymous, YES, waiter's crotches have been grabbed on MORE than one occasion!

Anonymous said...


I would love to come and pick up your kiddos on Monday mornings and bring them to CC for you. I know you struggle with getting Joseph, Hope, and now Zoya (yea!) to Barnes at the same time your older angels are supposed to be at Freedom.

If I picked Jude, Liesel, & Simeon up, you could drop the others at Barnes and maybe even stop for a cup of coffee and make an uninterrupted phone call before you came.

Give it some thought and let me know. I'd honestly love to do it. Or if there's another way I could make your life easier, please share. You and your family are a gift in my life! Linda :)

Jester 6 said...

from my husband -- I hope the crotch grabbing was by one of the kids! lol Yes, only my husband would say that. :)

Anonymous said...

I've commented before (I'm the one with the HIV+ babysitter). Your comment about the fear of other parents finding out about Zoya hit home with me. I truly believe that the fear surrounding HIV is ONLY due to lack of information and the gross spread of MIS-information.
When we discovered our friend was HIV+, my first response was fear. However, educating myself brought me from fear to compassion, understanding, and faith. Since you do blog and if you Google "Zoya Urban" your blog shows up on the first page, I would suggest being pro-active and sharing with the other parents about Zoya AND educating them. If one person found out from someone other than you, the whispers could be far more damaging than the actual truth.
Also, as a personal opinion, I think how you handle Zoya's HIV status now will dictate how she deals with it in the future. It isn't something for her to ever be ashamed of. She did nothing wrong.
I completely understand why you'd want to protect her from other people too...I'm not judging you at all. I just wanted to say that as another mom, I'd appreciate knowing if a classmate was HIV+ not from a precautionary standpoint near as much as from a standpoint of you having nothing to hide about it.
Honestly, if someone has an issue with it, it is their problem, not yours. I'd think the knowledge would need to come with education (preferably a health professional), but in the end your family would be blessed by sharing the knowledge.

Anonymous said...

Oh, and daughter does have extreme food allergies and I so appreciate that our church always posts what snack will be given during Sunday school. My daughter gets anxious when served food in those time of situations. Me being able to tell her ahead of time if it is an okay food or not (and supplying an alternative if needed) makes things much easier.

Alicia said...

we are in Mexico, in a small (150 members from babies to adults) congregation. My father in law is the pastor, my husband plays the bass, I teach the kids frm 7 to 9 yrs old. we also have bible studies 3 times a week.

Elias have always attended, from 7 days old, to now that he is almost 6 yrs old. we dont have a special needs ministry, and he is placed in the preschool group (from 2 to 6) until now he has been doing great.

Everyone knows him, everyone cares for him, everyone loves him, and every child looks for him to play. So literally he can be running around alone with them and I dont get worried.

People knows Elias some day will also be playing drums, and maybe teaching and preaching like us

At the end I guess is part of what his life is, and how he has grown up to, that church is his 2nd home.

we have a good and loving church.

kirsten said...

the waiter's crotch??? hilarious!!! still laughing w/ you on that one:)

Shelley said...

We no longer go to church as a family. I say it all the time and I will say it again, "church" (the building...the organized religion) was the biggest sacrifice that we have made by choosing to adopt children with special needs. Before adoption, we were actively involved in every aspect of a family. Now, I go every other Sunday morning(when the husband is off work to watch the boys) with my 2 girls. I can't volunteer for anything because I can't go on a consistent basis(my husband works rotating shifts). Our next step is to take the girls on the weeks my husband works and on Wednesday nights and I will sit in the van with the boys while the girls go to church. I have recently been "convicted" that we are failing our girls in this area because they should be in church more and I do worry that this will be the area where they resent their brothers. It's tough, but the alternative is that Xander would be at Torez(either alive in a crib or dead in their grave yard), Kullen would still be in that institution in Rudnik and Grifyn would be on his way to a place that makes me want to vomit just thinking about it. Giving up "church" is a small price to pay for my boys to have a family.
Does it make me sad? Yep. But my kids are worth it.

Anonymous said...

What an awesome church! I laughed out loud about the crotch grabbing! My son with Down syndrome gravitates toward men...always has. He's now 6 and I still have to be on guard all the time because he may burst out into a run in the grocery store and throw his arms around some random guy to give him a big hug. Or he may just reach out to touch him as he passes to say "hi". But we all know where those hugs and touches land. Glad to know we're not the only ones....LOL People always tell me "It could be worse. All he wants to do is give some love. At least he's not hitting!"

jennifer... said...

Very thought-provoking insights. Good to know when considering our own church's ministry (or lack of).

I've known you for years but I have to say, Charissa, your communication is very refreshing. Most "personal observations" you hear are really just indignant complaints -- a chance to tell someone off. Very hard to take up their causes. You, on the other hand, stir my imagination and make me feel what its like to walk in your shoes, for good and for bad -- and with a sense of humor that works. Keep it up! You're making a difference...

I'll make a lighter comment next time. ;)