Things Are Seldom What They Seem

benjamin-blog1

My favorite thing about the Doublewide Ranch is our front porch. We have a swing, two rockers, and a 15-mile view where we can see the lovely skyline of Asheville, eleven miles away. At night, the lights of the city twinkle and shimmer, and Asheville looks like the Emerald City in the Wizard of Oz.

But on this side of Asheville, there are lights that shine even brighter than the city lights, and for a long time, we speculated about what they might be. They shine luminous and golden and lovely—strung out like diamonds on a necklace. From a distance, it looks like a magical, fairytale sort of place and we spent a fair amount of time driving around in that area until we finally found the source of the radiant glow. What was it? Why, it was…a prison. Which, of course, explains the very bright, shining, golden lights.

The point I want to make here is that, from a distance, things aren’t always what they appear to be. And until we look closer and know more about a situation, we can often draw conclusions that are far from reality. And I make this point because, in recognizing National Autism Awareness Month,  I want to talk, not so much about autism, but about the great harm that words of judgment (so often based on scant knowledge) can do.

And as the mother of an autistic child, I have certainly known judgment. It’s bad enough when it comes from complete strangers—like the people who look askance when your child behaves in an inappropriate way in public. Truth is, I soon learned to tune those people out and shrug off their heedless words. But the judgment that hurts the most and cuts the deepest is judgment from the people you love—in my case, my extended family.

When Benjamin was very young (from about age two to four), he would scream in terror when I tried to cut his hair. It wasn’t a tantrum scream (believe me, I know the difference)—he was genuinely distressed. Having his hair cut was obviously, for whatever reason, very traumatic for him. (I have learned since that that’s fairly common with autistic children). So I made the decision to leave his hair long until we could figure out why it troubled him and how we could make it easier. (I did cut his bangs while he was sleeping).

This resulted in no end of snide comments and even ridicule from most of our extended family. Of course, I explained the reason to them, but it seemed to make no difference. Comments ranged from He looks like a girl to He looks ridiculous to You shouldn’t give in to his tantrums to Don’t you realize this is going to cause real gender identification problems for him?? (I reckon that means that they also didn’t like that I let him play with dolls.)

Around about the same time, Benjamin went through a phase where he liked to recite the complete dialogue (including narration) from videos he had seen. Amazingly, he could do this after seeing it only two or three times, and he did it verbatim, complete with inflections and accents. A real favorite was The Wrong Trousers (with Wallace and his faithful dog Gromit. Benjamin really fancied a British accent.) It was very entertaining, really. But, of course, this just gave more reason for my extended family to issue more unsolicited and ill-informed advice. “You must be letting him watch videos too much. That’s not good for children.” Well, no…actually I limited my children’s TV and video watching when they were young. I explained to my family that Benjamin could do this after seeing a video only two or three times. I could see from their self-righteous expressions that they didn’t believe me.

While most parents probably second-guess themselves and wonder if they’re doing the right thing for their children, I think parents of autistic children live with that feeling more than most. Often, it felt like I was traveling in a foreign country without a map, and sometimes all I could do was to put one foot in front of another, hold fast to hope, and pray I was traveling in the right direction. And it was not helpful to have people who have never been to that foreign country tell you that you’re going wrong.

I could go on and on with examples of how destructive to our spirit all the ill-informed opinions and unkind judgments of others were, but there’s really no point in that. But what I want to say is: If you know someone who is going through hardship—of any kind—first of all, listen. Listen to their fear, listen to their sadness, listen to what they’re NOT saying.

Second…educate yourself. Ask questions, read, seek answers—it shows you care. I really don’t think a single person in our extended families ever bothered to learn much of anything about autism. Yet, remarkably, they fancied themselves experts on how we should raise Benjamin. Imagine that.

Third, encourage. One of our dearest friends (who passed away a few years back) was our friend Ernie who, although blind, had the clearest vision of anyone I ever met. We were talking on the phone one day and she said, out of the blue, “You are the BEST mother!” And I cried. Just five little simple words, but they meant the world to me. We miss Ernie.

Fourth, unless they ask for it, resist the temptation to offer advice based only on your own experience. Remember: your reality is not their reality. As they say, don’t judge unless you’ve walked a mile in their shoes.

The irony here, of course, is that I’m likely preaching to the choir. Because if you’ve read this far, it means you care enough about me and my family to read through this little diatribe and that you’re probably not the sort to make rash judgments. Often, it seems that the very people who most need to hear something never do. As Paul Simon said in The Boxer, “…still a man hears what he wants to hear and disregards the rest.” (And, in case you’re wondering, no one in my extended family reads my blog. Even if they knew about it, I doubt they’d be interested enough to read it.) But if my words make one person think, then I think…perhaps…they are worthwhile. If nothing else, it’s probably a good thing to get this off my chest—it’s been a source of great pain for us.

So thank you for listening…and for your comments. They make me feel as though perhaps I’m not just crying in the wilderness—that my words are not all falling on deaf ears. For that, I am most grateful.

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22 Responses to “Things Are Seldom What They Seem”

  1. Pat Says:

    This is wonderful, Beth. I especially liked the part about listening without judging or advising…so often people feel that there is a problem that must be solved.

    Hope you all are enjoying spring time in the mountains!

  2. wesleyjeanne Says:

    Amen, sister. I am so sorry you went through so much pain from your family at a time when you were struggling to understand it yourself and do the best you could.

    I agree with Ernie: you are the BEST mother. I often think of you when I am struggling to figure out what to do with my kids and I remember what you told me about how you always wanted to simply be listened to. While I have not ever faced the challenges you have, I still use your words and your spirit as a guide in my parenting.

    Your kids are a testament to you. Benjamin is a wonderful young man. I’m so glad you didn’t listen to to voices telling you what to do (as in the Mary Oliver poem). The world is better for having your son in it.

  3. eemilla Says:

    Beth, I appreciate the reminder about advice. I have a bad habit when it comes to advice. Your blog is like a sanctuary of love and kindness.

  4. Benjamin Says:

    Sometimes my college roommate says things that I might misinterpret (and that sometimes really grate on me). I just have to remember, like you said, don’t talk until you’ve walked a mile in their shoes. It is impossible for me to ever know his state of mind (or anyone’s for that matter). But you are right. I can do better by just listening!

    I miss Ernie, too. And like Wesley said, you ARE the best mother.

    P.S. – That’s cool that we’ve been to a foreign country :-D I thought I’d just been to four states. It would have been nice to have a map, though, huh?

  5. Ariel Says:

    I’ve met no one in the world who is as strong as you manage to be even in weakness and helplessness. No matter how tough things are, you always manage to get back up and keep moving. The love you’ve invested in Benjamin’s and my life is testament to that. I admire you deeply for your courage and your strength.

    And yes, you are indeed the best mother! :)

  6. jayne Says:

    You know I know… all too well. Your words are so very true and poignant. It’s nice to meet a fellow sojourner with so much wisdom. Blessings to you Beth.

  7. Judy Says:

    Beth, You are so wise and I am sure there were many times you were frustrated with friends and family. It seems for some reason that family can be more judgemental than most people to other family members. I know because I have experienced a lot of judgement from my family over the years just like you because I always had a mind of my own and did not listen to their advice. I have to admit, too, that sometimes I want to tell Rob and Sarah they are doing something wrong but TW is their child and I have to hold my tongue. I can remember my mother telling me I was going to let my girls get killed running loose on the farm! I know just from reading your blog and how your children feel about you that you are one of the best mothers in the world. What your children say and how they feel about their parents when they are older always tells the true story as far as I am concerned. I read your children’s comments on this blog all the time and I think they speak for themselves when it comes to their “mommy”. By the way, my girls still call me mommy, too.

  8. colleen Says:

    I hope you will send this to the city newspaper for commentary publication during this month of awareness. It’s perfect. I love the set-up analogy. As one who was good at mothering as well I recognized it in you from day one reading here.

  9. Betsy Says:

    Hi Beth, I’m so glad I hooked you and Jayne up… You both know all too well what you are going through. I’m so proud of both of you!!!! You will get so much advice–from well-meaning people. In the end though, you need to do what works for you!!!!

    Hope you had a great week/weekend.

    We are glad to be home.. It was a wonderful trip –just getting to see my son and family. BUT–the weather was horrible. Oh Well!!!!

    I’m going to check through some of your older blog posts. I did see your gorgeous bluebirds though!!!! Love the one where he is ALL wet.

    Hugs,
    Betsy

  10. Sharon Says:

    This is such a good post about autism, and it is such a good post because it applies to life in general. I don’t have personal experience with autism except for a brilliant 8th grade student I once had, but I have been the judge and jury myself about so many things, primarily in regard to my parents and the things I thought they “should” do or think. It’s so true that the older you get, the wiser your parents become (although in the case of your kids, they already have it figured out). And even if my parents haven’t become all that wiser as I age, my understanding of them increases daily–and now they’re both gone. This is just one example of how I’m guilty; I’m not going to lay out all my sins right now! Thank you so much for this beautiful reminder about judgment and criticism as it applies to everyone.

  11. chris Says:

    I agree with Colleen that this post would make a great article for publication anytime but especially when the light is on autism.

    I have only recently been able to say to people that I have low vision and to ask for help when I need it because of my vision. The reactions are interesting. Some people simply help and listen but I’m surprised at the number of people who want me to be different, who keep asking if there is something that can change me. There isn’t. And the ones who really bug me are people who think I should hide my disability and attempt to pass as sighted. I think it’s because they are uncomfortable just thinking about disability instead of accepting it and going on with life. I did attempt to pass for sighted for most of my life, the stress and self loathing finally wasn’t worth it.

    The albinism gave me platinum blond hair, a blessing and a curse. It is one of my best features but has attracted cretins who assume that because I am blond I must be a bleached blond tramp and treat me as such. As a young woman, I often dressed down but that didn’t save me from verbal and physical attacks.

    Thank you for listening. It’s rare that I can even talk about these issues, they make people so uncomfortable. And so many people can’t just listen without wanting to “fix” things. I don’t need fixing, just understanding.

  12. CountryDew Says:

    What a great essay. I second the “get it published” comments.

  13. clairz Says:

    Thank you for this post, Beth. It was very enlightening to me and made me realize that, like Sharon in the above comments, I have often been both judge and jury. You help us all when you remind us, with your honesty and clarity, what it is like to walk in your shoes.

    I would also like to add that, in addition to being thought-provoking and full of ideas that will stay with me, your piece is beautifully crafted.

    See, thanks to the Internet, you have gone from being a wonderful mother to being a treasure to us all.

  14. Lora Says:

    I second that.

  15. CountryDreaming Says:

    Have read through this post several times now and even thought about it in church this evening. Still not entirely sure how best to answer. So here’s a memory similar to the start of your blog entry:

    When I was seven years old, my dad introduced me to astronomy. I devoured the children’s books, begged for more, and fortunately was given Sky and Telescope and Astronomy magazines as well as grown-up books to read when I was about eight years old. Memorized properties of various stars: Names, chemical composition, stellar classification, distance in light years from the Earth, and was trotted out in front of adult house guests once or twice to rattle off what I knew. Later on I found out that the reason why I’d been lucky to be allowed the magazines was that someone had expressed concern that the magazines might not be a good fit for me because they were written for a college-level reader, but I was given a chance to succeed or fail on my own anyways.

    Seeing the planet Venus near dawn became one of my goals. I would grab a set of binoculars, get up early, stare down the street … and there it was, right down at the end, blazing brilliantly! Or so I thought at first. Turned out “Venus” was simply a beautiful white street light set like a jewel in an elegant pole. :-)

    To try to get through this rambling and make a point: listening, educating yourself, encouraging, and resisting the temptation to offer advice based only on your own experience are all good advice. Even if you, like me, are the one who may be on the autism spectrum, and the people you’re trying to understand are the ones they call “normal.”

  16. Clara Melvin Says:

    Beth do you believe in giving children “drugs” for autism or AD (attention deficient). Could you please answer this on your blog instead of mine? I have a reason. Thank you Beth, I have read your post two times. I think you are one amazing woman (and Mother)

  17. Jeff Says:

    I, too, read your post twice. I didn’t take it as a “diatribe”, either – it wasn’t angry and didn’t lash out at the reader. It just informed the reader that perhaps they should not be so judgmental. I wish I could take the lesson of your post to heart in the areas that upset me the most. But when the actions of a minority of others affect the welfare of all, I think I am justified in being upset. Lately, I’ve gotten so frustrated that I have “lost it” …. maybe I should just quit while I’m ahead?

  18. blueridgebluecollargirl Says:

    Hi, Clara. I really haven’t had any experience with ADHD, so I can’t venture an opinion on that. But I have known of some people with autism that have been helped a great deal with the judicious use of medication. Benjamin didn’t take it, but if I felt like he needed it, I wouldn’t have hesitated to give it to him. So I guess I would say that—Yes, I do think that for some people with autism, medication can be very helpful in moderation.

  19. Shannon Says:

    Beth I *love* this post!!!! You are a great Mama, and a great writer! I’m going to send this link to my friend Lisa – I think she’d love to see your posts as her little one was diagnosed last year.

    Not meaning to be argue – but some of what you described is also how parents and people treat each other whether autistic or not. It’s one of the reasons why I just can’t be around my Mom that much. I imagine it must be so much harder to deal with when there is special needs that go along with it.

    And I happily keep Lukie’s hair longer – and they ARE allowed to have fairy capes if they darn well please. Shannon

  20. Shannon Says:

    Beth, I had to come back and read it again. I think your post is just fantastic for us as humans and parents on any level. You so moved me with your sage advice. Shan

  21. Debi Kelly Van Cleave Says:

    What a great reminder–from a distance, things are not always what they appear to be. Funny, I’m in the middle of “When You Are Engulfed in Flames” by David Sedaris and I just read a part about this couple he sits next to on the plane who are very well-dressed and look like they have money. He feels like a slob but then they start talking and every word out of their mouth is trash. There’s more. All funny. But the point was, just what you said, things are not always what they appear to be.

    However, I’ll tell you one thing I know is what it seems. It’s you. I can tell you are a wonderful person and a great mother. I have great faith in that.

    http://www.GreenerPastures–AcityGirlGoesCountry.blogspot.com

  22. ginger Says:

    Great post. Please publish. I remember the horrible advice. Some of which I took. Unfortunately. Didn’t take too many years to realized we were working within a different operating system and consequently changed gears. Not everyone could imagine that there were different operating systems and continued to offer advice.

    Oh well.

    I love all of your gentle posts on life with autism. They encourage. Definitely don’t come across as strident or harsh. Lovely. Make me feel blessed to know there is someone else on the journey, a bit farther along, doing great. BTW, the bird photos are great!

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