Tag: respite

I’m taking a Theology of Disabilities course right now. I have to admit that some baggage that I didn’t realize I was carrying has gotten heavy. I’m putting it down, starting now. The truth is, I realize I have felt disappointed by the church, and by my church. I’m hurt that the church has failed so badly in helping the disabled (specifically my disabled child) feel like they really belong. It’s not just about allowing the disabled to be there near us, it’s about really knowing them, and really appreciating who they are, because God made them, and they are valuable.

Ya see, times have changed. When I grew up in the 1980s, we’d all make fun of kids that “rode the short bus”…maybe not to their face, but imitating “Tards” was something I excelled at. I was hilarious. I was the disabled one, if we’re telling the truth here. I was spiritually retarded. God gave me a precious gift in my son to show me God’s true heart. To show me my true humanity. The disabled personify the weakness we avoid. Nathan helps me get over my human/secular and foolish ideas about what it means to belong and be successful in God’s worldview.

Here’s the other cool thing. God gave me Nathan to share with you, too!

I think, my generation still fears the disabled. I doubt many will dare admit it. (It’s not politically correct, and we can’t look like uncaring jerks, right?) To most of us, the disabled are still a stigmatized and strange group; and we don’t know what to do with them…we don’t know what to do around them…we aren’t sure what they need. It’s all quite uncomfortable. Gosh, we are so glad we are not them. And we’re afraid. Afraid of the unknown and the unfamiliar, and the “other”.

Here’s the surprising twist. Our (non disabled) kids don’t have the same mentality. They don’t. Over the last 10-20 years, those with disabilities haven’t been sent away to special schools. They have been included, or in far closer proximity to typically developing children. The secular, public schools have outdone, and surpassed the church in this area of grace. They have honored and accepted disabled kids more than the church.

Please. Read those 2 previous sentences again…Slowly. Okay, never mind. I’ll just state it again: They (secular institutions and those who are a part of them) have honored and accepted disabled kids more than the church has.

(Yes. You should feel convicted right now. Even crying wouldn’t be over-the-top.)

As a Parent:
As the mom of a disabled child, I find that typically developing children, with just the a little bit of prompting or advice, adjust very well to interacting with my son, as if he’s a real human being who desires friendship. They even enjoy him! (It’s not just charity. It’s reciprocal friendship. It’s the kind of relating where everyone wins.)

On the other hand, I find that it is the parents of these (non disabled) children who are fearful, and unwilling to engage with my son, beyond the superficial. They are fearful enough to not help their child build friendships, or regularly interact with a disabled peer, or near-peer. They don’t create an easy opportunity for their child to grow, learn and become more compassionate. They don’t make it priority. As a child’s primary guide, this is a gross failure.

Church:
But this is different at church, right? It’s a place of acceptance, and hospitality, and belonging, right? God’s love is shown in tangible ways, right? WRONG. My son has more meaningful relationships and friendships, and more grace shown to him with non Christians, in secular (even godless) environments, and with neighborhood children. (See, the government schools have been telling these kids that atypical kids were worth interacting with.)

KIDS @ PLAY
Once upon a time, I bemoaned to a woman at church the fact that Nathan had no friends at church, no meaningful interactions with any church children, no invitations extended to him to play with them, go to their birthday parties, or even watch a movie together (even after we had make a lot of efforts to create those situations and occasions). Her reply, “Well, I can’t force my kids to play with certain kids, and to like certain friends.”

I listened to her statement, and I didn’t really know what to say. This mom was prominent in the church. I didn’t challenge it. Upon reflection, I should have said, “LIKE HELL YOU CAN’T!”

As parents, we do it all the time. We curb or we encourage friendships for our kids regularly. Do we let our kids hang out with teenagers on the corner who are smoking? Uh, no. Does a naughty and petulant child get to sleep over? No. What about the children who bite, hit, or cuss? Do they get to make cookies in our kitchen with us? Nope. We influence our kids all the time. The fact is fear stops our hospitality. We stick with our comfort level, and pick our favorites.

I’m here to tell you that God has given us these different sounding and acting people as gifts, to teach us so much, but we don’t choose to interact, learn and be gracious.

“But I can’t find a disabled kid… What am I supposed to do?”
Well, try harder. Open your eyes. Ask around. Do you want the truth? The facts? Here they are: Do you live near 5 other homes? If you walk down your street, and pass 5 homes, 1 of those homes will be effected by disability.  1/5 of families are effected by disability everyday. 

Do you know more than 6 children? If you know 6 children, 1 of them is likely to have a form of autism, or developmental issue.

Sometimes, I hear this: “Is it my job? How can I be responsible for knowing other people’s needs. I’m just not in their shoes.”
Yes. It’s your job. A frequent reason (or cop out) is saying that the parents of disabled children should just say what they need, and make the efforts to get their kids included. BULL CRAP!

Just thinking up a list of wants and needs would sound exhausting to a parent of a disabled child. Some days, they are just trying to make it through the day without losing their minds. Over 85% percent of marriages don’t survive when a child has a disability. It’s tougher than you think it is.

Listen. These parents have enough to deal with. Wake up! They have enough to do than to also make sure typical children are accepting and relating to their disabled kid/s. Mostly, they are tired. It doesn’t feel worth the effort. Failure seems sure. They are surrounded by frequent disappointments, the broken dream of not having a normal kid, and lots of scheduling issues and therapeutic measures in school, community, and other locations that help their kid or their family. They don’t have enough energy to get people on board with that type of stuff on top of everything else. (Ask them what a typical week is like, go ahead.)

YOUTH GROUP
My son went from being very excited to be old enough to be included in the middle school Sunday School section (See, in 5th grade…you get to sit on cozy couches!!) to now, about a year later, in 6th grade, detesting Sunday School, feeling like an outcast (even more than he had before), and now he doesn’t even believe in God. He says, “God is an unbelievable story.” It must seem like a fairy tell because he doesn’t see the love of God displayed toward him.

Based on the way many Christians behave toward him, he has an excellent point.

Like plenty of other children with autism or developmental disabilities (BTW…”developmental disabilities ” is nicest term for “retards” or the “mentally retarded”), Nathan doesn’t get abstract ideas like, “Is Jesus in your heart?” (He hears, “Is a bearded man in your chest cavity?” Utter nonsense!)

Nathan can’t see or touch Jesus; we have to be Jesus for him. He has to experience love-in-action, benefit from it, and be allowed to return this love as an equal. I don’t know if it’s too late for my church to be hospitable in the way that he’ll to want to be a part of it. I will keep that hope. I’m writing this now to start a change in how we respond and interact, so other kids with disabilities can feel like they belong, and are loved and accepted.

TIPS to get you started (for kids and adults)
• Interaction doesn’t have to be hours of incredibly awesome friendship per day or week. A blood brother bond is not necessary. But, the interaction should be authentic, not out of duty or pity. Something simple like making something for them, sharing something, or just chatting pleasantly with them is plenty for starters.

• Asking about their interests (direct questions are best, maybe even just asking “yes or no” questions, at first), and then actually listening to them (even when you may not always understand them or know what to say) is helpful. They WILL understand when you care about them. Just take a bit of time to be gracious. It’ll do you good.

• Inviting them over for a snack, to watch a movie, take a walk, ride bikes, play with your pet, or play videos games may be enjoyable for them, and of course invite the family if possible. Ask if you can visit them. Create times that are specially for them, even if they are brief periods. 30-45 minutes is fine. (But realize they will love you for it, and want to do it again soon. My son never seems to stop talking about the boy we invited over to play, about 2 months ago.)

• Offer them yourself. Nothing fancy. Invest in them for real, emotionally, and with some of your time and efforts. When you offer authentic friendship it looks different than just a saying or doing the “right thing”. You take a risk.)

• Help them make a craft, picture, or a simple snack, play a game, look at a book, build with legos, and take the time to talk to them, or just be close by and attentive, etc. and show them you like them.

• Offer the parents of disabled kids respite time. Give them an hour or two break, and get the help, information, and extra helpers you may need to care for the child. (Only 10% of churches do this. Change this statistic.)

• Be inviting.
What’s the worst that could happen if you invite a family over to your house? Maybe the child will do something unpredictable, and you won’t know what to do? Maybe you will feel uncomfortable? Get Over it.

MOVING FORWARD:

Where and how have you seen the disabled as full-fledged participants in your community or ministry? (How was it done rightly?)

AND–
How can I help you? If you want to show kindness, or God’s love to a family of a disabled person, or to a disabled person, What are your questions or concerns?

What about including or interacting with the disabled would you like to know? 

What are your fears? Share them.

Let’s get this ball rolling. No question is off limits. Your comments, or experiences can be shared as well.

Thanks for reading. Thanks for changing for the better.
-Lisa