How Not to Offer Comfort
Well meaning people can be so annoying sometimes. Especially those times when they try to comfort you but are really just trying to comfort themselves. Especially when they ignore the reality of your life that you are trying to share with them to offer comfort to you which is really comfort to themselves.
I had a conversation with someone this morning who frequently tells me, with regard to Isaiah, "Oh he'll talk when he's ready," and "One day he is just going to start talking." GRRRRRRRRR. This is supposed to make me feel better but all it really does is irritate me. It is especially irritating because it often comes in the middle of my responses to questions about how Isaiah is doing. It also tells me that this person hasn't been paying attention to all of the information that I have been passing on about autism. Nonverbal autistic kids like Isaiah don't just wake up one day and decide to talk. If a nonverbal autistic person becomes adept at using verbal communication it is because teachers, therapists, friends, family members and the autistic person all work long and hard for it to happen. Part of me wonders what will happen if Isaiah end's up using one of those keyboard gizmos (I've only ever seen one in person once, the conversation never got around to what the device was called) to communicate. What will we do with the "Oh he'll talk when he's ready," and "One day he is just going to start talking" lines then?
Here's a tip for the religious folk, don't tell me that you're praying for God to make my kids "normal". You can pray that if you want to but I don't need to know about it. Especially don't tell me that if I just have faith God will "fix" them. Certainly don't tell me any of this while I'm trying to explain to you why you can't treat my autistic kids as if they were typical kids. Also don't quote verses to me such as, "Now unto him that is able to do exceeding abundantly above all that we ask or think" (Ephesians 3:20) in order to convince me that God will heal my autistic kids if I just ask and have faith. Use of that verse in this context only brings one question to my mind. What makes you think that God didn't do exceeding abundantly above all that I could ever ask or think when he gave me my autistic children?
Psalm 139 is as true of my autistic children as it is of any "normal" child:
I'm not going to spend my life pining away for what I want instead of appreciating what I've got.
While I'm addressing the religious among us I have to mention the phrase, "Faith can move mountains." I don't think anyone has tried to "comfort" me with that one yet but that may only be a matter of time. Anyway, faith can move mountains but what makes you think that the mountain should be moved? Who told you that God wanted your faith to move that mountain? How do you know that God didn't put that mountain in your path to tell you to slow your roll before you hurt yourself? How do you know that God didn't put that mountain in your path to say, here climb this? God puts stuff in our lives for a reason. Some stuff you haven't got a clue why it's there but like a knife in a still beating heart it needs to stay right where it is if you want to survive.
So what you know people who have been healed of cancer? Thank God for the good medical care they received. Thank God that they weren't one of the thousands who die of cancer every day. But what has that got to do with me and my autistic kids? Surely you aren't implying that those who were "healed" were more special and deserving of special treatment from God than those who died?
Tonight I had a very unpleasant episode with Ethan (I'll blog about that after I get some sleep) that probably would have been a lot easier to deal with it he wasn't autistic. But he is autistic, hubby and I dealt with it despite the challenge, and we all survived mostly whole. In the midst of the madness I caught glimpses of Sophia as she sat with us offering support (mostly by being the only one not stressed out although she clearly understood that it was a stressful situation) to hubby and I and Ethan. What a blessing.
I had a conversation with someone this morning who frequently tells me, with regard to Isaiah, "Oh he'll talk when he's ready," and "One day he is just going to start talking." GRRRRRRRRR. This is supposed to make me feel better but all it really does is irritate me. It is especially irritating because it often comes in the middle of my responses to questions about how Isaiah is doing. It also tells me that this person hasn't been paying attention to all of the information that I have been passing on about autism. Nonverbal autistic kids like Isaiah don't just wake up one day and decide to talk. If a nonverbal autistic person becomes adept at using verbal communication it is because teachers, therapists, friends, family members and the autistic person all work long and hard for it to happen. Part of me wonders what will happen if Isaiah end's up using one of those keyboard gizmos (I've only ever seen one in person once, the conversation never got around to what the device was called) to communicate. What will we do with the "Oh he'll talk when he's ready," and "One day he is just going to start talking" lines then?
Here's a tip for the religious folk, don't tell me that you're praying for God to make my kids "normal". You can pray that if you want to but I don't need to know about it. Especially don't tell me that if I just have faith God will "fix" them. Certainly don't tell me any of this while I'm trying to explain to you why you can't treat my autistic kids as if they were typical kids. Also don't quote verses to me such as, "Now unto him that is able to do exceeding abundantly above all that we ask or think" (Ephesians 3:20) in order to convince me that God will heal my autistic kids if I just ask and have faith. Use of that verse in this context only brings one question to my mind. What makes you think that God didn't do exceeding abundantly above all that I could ever ask or think when he gave me my autistic children?
Psalm 139 is as true of my autistic children as it is of any "normal" child:
13For you(P) formed my inward parts;
you(Q) knitted me together in my mother’s womb.
14I praise you, for I am fearfully and wonderfully made.[a](R) Wonderful are your works;
my soul knows it very well.
15(S) My frame was not hidden from you,when I was being made in secret,
intricately woven in(T) the depths of the earth.
16Your eyes saw my unformed substance;in your(U) book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
Psalm 139: 13-16 (ESV)
I'm not going to spend my life pining away for what I want instead of appreciating what I've got.
While I'm addressing the religious among us I have to mention the phrase, "Faith can move mountains." I don't think anyone has tried to "comfort" me with that one yet but that may only be a matter of time. Anyway, faith can move mountains but what makes you think that the mountain should be moved? Who told you that God wanted your faith to move that mountain? How do you know that God didn't put that mountain in your path to tell you to slow your roll before you hurt yourself? How do you know that God didn't put that mountain in your path to say, here climb this? God puts stuff in our lives for a reason. Some stuff you haven't got a clue why it's there but like a knife in a still beating heart it needs to stay right where it is if you want to survive.
So what you know people who have been healed of cancer? Thank God for the good medical care they received. Thank God that they weren't one of the thousands who die of cancer every day. But what has that got to do with me and my autistic kids? Surely you aren't implying that those who were "healed" were more special and deserving of special treatment from God than those who died?
Tonight I had a very unpleasant episode with Ethan (I'll blog about that after I get some sleep) that probably would have been a lot easier to deal with it he wasn't autistic. But he is autistic, hubby and I dealt with it despite the challenge, and we all survived mostly whole. In the midst of the madness I caught glimpses of Sophia as she sat with us offering support (mostly by being the only one not stressed out although she clearly understood that it was a stressful situation) to hubby and I and Ethan. What a blessing.
Beloved and yet afflicted...
ReplyDeletehttp://www.spurgeon.org/sermons/1518.htm
Praying for you.
Well stated.
ReplyDeleteGod Bless.
Right on! Earlier this month Oprah did an episode on Autism. A parent on that show made a comment that sums it all up for parents, siblings or family members with children with disabilities. He said "Would I love my child more if he was normal? No I love him now." I had (God rest her soul in peace) a sister who suffered from violent seisures her entire life. I got tired of hearing God will heal her one day. He took her home exactly as He gave her to us...she passed away one night due to a seisure.
ReplyDeleteI recently stumbled across your blog, but I wanted to briefly comment on how much I appreciated your re-framing of Ephesians 3:20. Too often, “difference” (or whatever is perceived as non-normative) is assigned a negative value that must be “overcome.” But for whom?
ReplyDeleteBest wishes,
Krysta
I recently discovered a group whose stated goal is to defeat autism in Jesus' name. I wonder who told them that autism needed to be defeated?
ReplyDelete