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Your Input, Please

| 11 Comments

Your Input, Please
In a few weeks, I’m going to give a little informational talk to a women’s group from my church. What am I going to talk about? Well, I was wondering if you could help me with that. The topic of my talk is autism. And, yes, I really don’t need any additional information on that — I mean, I could go on for days as it is — but I’m wondering what other people would like to know. The amount of information about autism has gone up tremendously over the past few years. Just last week, Oprah did a show about it. But, you know, there is a lot of information out there and I’d just like to know what people would like to hear about. So, if you could leave your question(s) in the comment section of this post I’d be very grateful.

11 Comments

  1. Some of my friends at church who volunteer with the kids have told me that they’re not sure what to do with my son in their classes… how to engage him, how to discipline in a way that guides him toward participation… you know, all those things that if someone would tell ME, my life would be so much more stress-free.

    They do seem genuinely interested in how to reach out to him and get to know him, and I guess that’s what I told them, that each kid with an “autism” label is different and can’t be “reached” in the same way, that you have to get to know each kid on an individual basis, which is so hard in a group environment. I have specific ways that I reach out to my E., but telling them those things won’t help them with other kids with autism.

    So, anyway, that’s the POV a few of my friends at church have come from in asking me about autism… how can I reach out to him and interact in a meaningful way when I don’t know him personally.

  2. I agree w/ Ranae, often people dont interact because they don’t know how to interact…they are afraid to do the wrong thing. I think just letting people know the basics (what is autism, how it occurs, manifests, etc.) will in itself help because it will take away some of the uncertainty. And I think you will do great no matter what just sharing what is on your heart to share about these precious kids! P.S. i am planning to come even though I didn’t sign up – can this count as my sign up?

  3. I am curious about the contemporary definition of autism. When I worked in “the field” years ago, those who were labeled autistic exhibited such a variety of behaviors, unlike “Downs” kids who shared so many characteristics of physiology as well as personality. Is that still the case?

    Is autism still defined according to a broad category of “symptoms/behaviors”? If so, what are they…if not, how is it diagnosed?

    Have any physiological or genetic connections been discovered?

    From a practical point of view, I would like to know if you want to be asked questions about J?

    Do you want his differences to be noticed and talked about or overlooked? Either seems like it could be offensive…

    Are you O-K with strangers asking about him?

    What is the “politically correct” language to use today?

    Plus, I would like to hear your personal back story of all this…when did you know?

    How did you take it?

    How did you go about finding the best interventions for him?

    Do you still have to advocate actively on his behalf?

    How do you envision his future and yours…will he remain home as an adult?

    What are his particular gifts and deficits?

    What ways would you recommend the church to minister to families just learning of their child’s autism?

    What kind of words and deeds are helpful and which are unhelpful, clumsy, trite…?

    How has this changed your marriage?

    How do your other boys relate to him? Do they “get” him or do they feel isolated from his world?

    Sorry you asked? I could ask more, but I think I have depleted my quota!

    I am looking forward to your talk, Annie!

  4. Thanks so much for the input, y’all. It is really helpful to me. And, if you haven’t yet contributed, please leave your questions or comments, if you have any.
    Thanks.

  5. I am looking forward to your talk too. I think the suggestions here cover what I am interested in knowing, especially how best to relate to your son, particularly in the church setting.

  6. Questions:

    1. Is your husband autistic? 🙂
    2. How do you focus on the present and not worry about the future?
    3. What kinds of comments / questions from others annoy you and what kinds don’t? (e.g., questions about what James is like are fine, but questions about the future can be very painful)
    4. What could Christian schools do to help autistic kids? what was your experience with the Christian schools in st. louis?
    5. How do you stay so beautiful and cool with all the stress in your life? 🙂
    6. Might discuss what this has taught you about analogous conditions – ADHD, etc. I know in my case that it was easy to poo-poo the idea of hyperactivity until I started seeing the points of contact with autism.
    7. How has autism affected your perspective on the health care system and its proclamations and policies? Have you ever even felt like a doctor was willing to treat James as a whole person with respect to all his problems, or do they tend to ignore the details and focus only on his “AUTISM”?

  7. Might also talk about how the church can help the normal / neurotypical siblings of autistic and other disabled kids.

    Also, some people might be interested in why so many of these problems – ADD, autism, etc. – affect boys more than girls.

    And inevitably some people are going to ask about vaccines, so you might have some facts / figures handy even if it is to back up the assertion that the jury is still out.

    Hope this helps, shug, I know that you’ll do great. I’ll take the boys somewhere to get them out of the group’s hair for your talk.

  8. I think so many of the questions I am interested in asking have been asked. From reading Jon and your blogs, it seems like it has been trial and error to see what was helpful and what you threw out. Please give yourself enough time to talk and also time for questions. For so many of us, any information will help us understand how to come along side and hopefully help. We vowed to help in the “raising” of each covenant child. It wasn’t a vow for some or just those who are “normal” (whatever normal looks like), but for each special child made in God’s image.

    I appreciate you doing this and it will be such a help for so many of us who would like to interact with your family in a helpful, caring way.

    I love your blog. Thanks for all the great thoughts, some very funny things, and wonderful yummy recipes. You are a blessing Annie. Joanie H

  9. I hope you will be able to record and post your talk…or at least notes. Sounds like a good ‘un.

  10. I wish I could hear you talk about autism. My 10 year old has a mild form of it, Asperger’s Syndrome. We actually just told him that he has it. We showed him a three fold paper that we had done when he was 7 to hand out to people so they would understand him and maybe befriend him despite his challenges. He was a little shocked at first. But then he said Am I like other kids? I said, “Everyone is different, and that’s how God wanted it.” Then he said, “Ok, can I get back to my show I was playing with my action figures?” Funny boy.

  11. Have you come across or used the neurodevelopmental approach? I went to some talks by Linda Kane at a homeschooling conference and she had a lot of interesting things to say. I don’t know much about autism, but I know that you have looked into lots of different things. I was wondering, if you have come across this approach, how it measured up to the other ideas floating around out there?

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