Last night my better half gently suggested to me that my previous post came off as rather arrogant and angry. I was glad for the observation, as I hesitated for a while before posting due to a somewhat uneasy feeling about the read. If you felt I was angry at you, please forgive me! I do not think I am angry (although I know I am proud!), rather my mind has been reeling with all kinds of ideas since our week with The Elisha Foundation and I am finding it hard to get the time to write it all down! Another fine example of clicking SEND too soon!
So, here is a second attempt at talking about how to minister to families with a special needs member.
Yesterday, I wrote: “...even more important than physical accessibility is relational openness.” That point cannot be understated.
Jeremy Pierce commented on this... “I'd be happy to have people stare as much as they like if it would get them to remember how difficult it is to have two autistic kids and little money for babysitting and then volunteer to watch them for us. Respite from care for them is a much greater need than wanting to be treated as normal.”
For that kind of care to take place, people need to be known.
Yet, representing the other side of things, the ReformedMommy asked: “... we have a dear new family who have several adopted foster children, one who is close in age to our 6 y.o,daughter, and "seems" to be developmentally delayed. Is there any polite/loving way to inquire, or is it most loving to just wait to be offered information?”
Can you feel the tension?
So, I think the first thing that has to happen is for people to start talking to each other, rather plainly, about what is going on. One commenter noted that not everybody feels “ready” to talk about their child’s disability or special needs. As much as that may be true, I think that may be the hurdle they have got to get over just as the “normal” people have to get past some of their fears and misgivings.
All the parents we talked with at the TEF Retreat, for instance, were eager to have people understand them. Susan and I talked about this a lot yesterday. It is a careful balance. We do not want to “make” everybody understand all the nuances of Williams Syndrome, but we love it when they take an interest in learning about it! There have probably been lots of times we have talked more about this in conversation than we should – after all, it is not Williams Syndrome or my son that defines us! But there have been other times we have said nothing at all only to have a well-meaning new acquaintance end up saying something rather embarrassing in the context of our family’s needs.
Ah, more tension!
Which leads me to the big point of this particular post.
In my view, only the Christian Church is really set up to joyfully co-exist with families of all different types of needs. For a large measure of the tension we feel is bound up in our own sin, and only Christians have a means to genuinely deal with that sin. Because God has given us the Holy Spirit, we can be humble. And large doses of humility are what is needed in order to walk through all this tension and awkwardness.
Humility to have a new friend say your daughter with Rett Syndrome has Down Syndrome. Or the humility to walk up to a new family at church with a physically impaired son and get down on your knees to address him in his wheelchair. Or the humility to admit that you have no idea what life must be like for that family, and so you ask them to explain it to you. Or the humility to have that family into your home (and that one goes both ways!).
As
I think you hit the nail on the head, Paul. While we are still infants ourselves in the world of special needs (our son with Williams Syndrome is only 16 months), we find the hardest part when it comes to church is knowing that we are being wrongly judged by people who don't really know our situation. A big dose of humility on everyone's part (including our own) would solve so much. Our son's disability is not very obvious yet, and even if you do know about it, it doesn't seem to be that big of a deal from the outside looking in, yet it affects us in profound ways. Right now, it keeps us from being able to serve in the church as much as we would like. Even being at church at all can feel like a luxury. From the outside, we look flaky and uninvolved, and sadly sometimes we are looked down on because of it. We'd rather be encouraged than judged!
ReplyDeleteThis is definitely not the norm; we have found so many of our dear friends and fellow believers to be caring and very willing to help and encourage us (and for that, we are eternally grateful!) But I think the saying goes, it takes ten positive comments to neutralize one negative. Nobody likes to be kicked while they are down.
Sandra
What I find hard is having offers of help refused. like totally refused. knowing that it's hard to ask for help all the time (or what might seem as all the time) I can understand wanting to maintain some pride and independence. I really can understand that.
ReplyDeleteBUT when a person refuses offers of help for getting to church on a Sunday morning, or to have someone sit with their child so that they can leave the house and go to a bible study....that I find hurts the body of Christ too.
How does one deal with that? How can someone support someone else who refuses to be helped in small ways?
Annette,
ReplyDeleteI don't know the particulars of the situation you're in, but I can say that I regularly turn down offers for help. In my case, I greatly appreciate the offers, and the fact that someone is offering at all is so encouraging to me, so that alone is helpful. However, much of what is offered to me would not actually be helpful. For example, I have numerous offers to drop my kids off at others' homes for an evening. Sometimes, that might be helpful. But usually, it is not, as it would upset my son's routine (who has special needs), and then I would pay dearly for it for days after, so it wouldn't be worth it. I usually tell people how thankful I am for their offer, and say that just knowing they are available if I need them is a relief (and it is indeed).
Perhaps on your end you could just ask what WOULD be helpful or encouraging to the family. Leave it open ended, and assure them that you would love to do whatever they need (but only say that if you mean it!) If all they say is "please pray for us", then faithfully pray, follow up, and regularly ask for specific requests. There are many practical aspects of having a child with a disability that cannot be relieved or fixed by others, but a little encouragement can go a long way in helping to make the load a little easier to bear.
Sandra