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Explaining The Tightrope

18 Comments 29 August 2010

My youngest child did not talk until she was five years old.  It was a very long and arduous five years filled with hours and hours of speech therapy, testing and fear.  Fear that she would not ever talk.  The frustration that accompanies a child that can not verbally communicate is immense.  She has tremendous frustration that is the result of her impulsivity and her anxiety, but the inability to communicate verbally took it to an impossible level.

Then it happened.  She began to utter words.  Then the words turned into sentences.  Sure, they weren’t normal sentences, and phrases like ‘telegraphic’ speech were used to describe it, but still…she talked.

In these last five years, her speech has grown tremendously.  She has grown in her motor-planning and as a result, she has not stopped talking!

Now, she talks non-stop.  It is great to know when she is hurt, when she is hungry, when she is happy and sad and so on…HOWEVER, having the use of her speech has given her a tool, a vessel, a conduit…through which to DRIVE ME INSANE!  Or the ability to tell the man at the grocery store that he stinks, or the sweet lady at church, “I hate you!”, or to tell her teachers at school, “my mommy so mean!”  It carries with it a level of hilarity that can only be appreciated if you don’t let how freaked out people are get you down!

Yes, I recognize that many of you are seriously doubting my capacity as a mother right now, or at least my ability to be grateful for the wonderful gift of speech.  However, unless you personally have ever experienced the incessant questions, statements, words, or “mamma,” then you should not judge me.  Oh, I know, “every kid does that…”  Let me bring you into the loop, every kid does not say words, the SAME words and statements, and questions, OVER AND OVER AND OVER AND OVER again until you literally think you will lose your mind.

Have you ever actually looked into what Chinese Water Torture really is?  Just one drop of water, dripping over and over onto the forehead…  If they had a University program, MH would have her PhD.

And no, it isn’t like you can tell her the answer or to stop asking, or to stop saying that…even if you look that cute little kid in the eye, she does not get it.  You can say one minute, “you disobeyed, there will be no prize.”  And low and behold, just seconds later, “Mom, mom, mom, mom…can get a prize? Please, please, please mom.”  Even writing it down makes it sound so normal, but if I could have literally made an audio recording in my home for the last three hours, you would be buying me a one way ticket to somewhere…I’m just sayin’!

I have never considered myself patient, but honestly, the fact that she still lives proves that I am.  I know she can’t help it.  So in one moment I am furious, the next I am riddled with guilt, the next I want to poke my ear drums out…or at least, run out the door and catch the first plane to Tahiti!  And eventually, I just start laughing.  Maybe it is the onset of full-on mental illness, but really, getting mad and screaming, well, it has the same affect as nailing jello to a wall.  So, I laugh…and most of the time, I give in, I give her a prize, I do ANYTHING, to get her to stop.

I love an artist named Brian Andreas, he is clever and witty and says things that I wish I had said…this is one of my most favorites:

most people she never tells about the tightrope because she doesn’t want to listen to their helpful comments from the ground

It reminds me that my life, like so many of us, is walked on somewhat of a tightrope and unless you are up here with me, it is virtually aimless to attempt to explain what it is like.  Besides, it is the compulsion of polite, Southern culture, to be helpful.  So, when I lament a part of my life, I am doing so to show you the humor and the brokenness that is this life we all live.  I do not expect you or anyone to fix it.  Grieve with me, laugh with me, (buy me a ticket to Tahiti) wonder or imagine if you would like to, but as for the “helpful” comments…well, give them to someone else! 😉

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18 Comments so far

  1. Judy Baker says:

    Oh the joy of knowing that I am so NOT ALONE! Don’t get me wrong – I wouldn’t wish this on anyone. But there is some humor in what you and I go through. If I’ve heard it once tonight, I’ve heard it a thousand time. Mom, I want a chocolate malt. Not now honey, after dinner. Mom, I want chocolate malt. Not now honey. Mom, I want a chocolate malt after dinner. Okay honey, after you eat supper we’ll talk about it. Relentless. Or there is also the time that she is so frustrated and in the middle of the airport she lets out a loud “stupid idiot,” and it’s directed at me. I want to crawl under a rock sometimes.

    Love you, Jorga! Thanks for reminding me that there is humor in it all == God love my little angel!

    • Jorja says:

      judy, yes, those public displays of ‘love’ can leave me feeling oh so humiliated! last night in church, or at least the few minutes that she allowed me to sit through, she began asking for a sippee cup because she knew they were in the church kitchen. and that was it, it would be a sippee cup or death for her…i must admit that i was to tears before the night was over. it was a really tough weekend. but it does me good to know i am not alone, so thanks for commenting. love you too!

  2. Jorja, I LOVE the tightrope painting – there are certain aspects of my life that it applies to in a big way! And also, thank you for being so candid about your experiences with your daughter – I think, as mamas, we all need reminders that it’s OKAY to feel those things, and that frustration doesn’t in any way diminish our appreciation for our amazing kids. Take care – s

    • Jorja says:

      stacey, i love my kids, but there is nothing in this world that reveals my foibles and my challenges my weaknesses like trying to be a mama! it is interesting to me though that it seems to be more natural for some women than others? either way, love trumps it all!

  3. Judy Helfand says:

    I can’t afford Tahiti, but I can grieve and laugh with you. Tonight I watched the Emmys. The HBO movie “Temple Grandin” walked away with many awards. Have you heard of her? I had not, nor have I seen the movie. Learn more here Temple Grandin

    This is not a helpful comment…just a comment from the porch, or from another room.


    • Jorja says:

      judy, yes, i actually started reading the book about temple a couple of years ago. never finished it, but i was so excited to watch the emmys and see such recognition for her and for autism in general. i know your heart, you need not qualify your comments to me!

  4. Lori says:

    Again Jorja….the life giving honesty…the permission, even the urging to be honest and forthright. I’m so tired of the “shows” that so many put on that leave me questioning my acts, motive and feelings.

    I also hear you on the just laugh, don’t try to fix it. Just HEAR me and leave it at that.

    • Jorja says:

      lori, let’s just say it is a really good thing that i posted this thing at 3:30 yesterday afternoon and not at 10:00 last night. the day got progressively worse as did MH’s behavior. i don’t think i have been at my end with her like that in a long time. i was certainly not laughing and had i been honest last night it might have been too much for some to handle. anyway, i appreciate your care for me. love you!

  5. Ginny says:

    Thanks again, Jorja. Though my 13yrold is not able to put two words together (except “dankoo”), he does say “hey” which must mean a thousand different things considering its frequency repeatedly every morning, every afternoon, every evening, every bedtime, every grocery trip to every employee at least 5 times and then some to customers as well. I often tell him, “D, you would try the patience of a saint!!” Sometimes in a joking tone and sometimes in anger. And, let me tell you, I am no saint. . .thanks for your openness and for letting me say things and even think things that I haven’t allowed myself to–ever. It’s like being able to relax for the first time in a roomful of strangers or letting out your breath when you didn’t even know you were holding it in.

    • Jorja says:

      ginny, you see, i can be grateful that MH has words, other than Hey, but then again, “mom, mommy, momma, mama, mommy white, jorja, jorja bea, miss jorja, aunt bea, honey” yes, she calls me all of these…and then she starts with, “excuse me, hey, excuse me, mom, excuse me, hey!” it is crazy making for sure! i wrote the psych dr. today to see about new meds. there has got to be something better than where we are right now. but honestly, being open about it and how it makes me lose my mind is the only thing, other than wine and my meds, that is keeping me from losing it! love you girl!

  6. Ginny says:

    Yes, knowing what a constant “hey” does to mealtime conversation should make me thankful for those mere monosyllabic grunts! I’ll be praying for new meds. Oh and I hope my post didn’t sound like, “you should be thankful at least your child does this. . .” sort of thing. I’ve had people say things like that to me and that NEVER makes me feel better. We need to talk to Jill R. about hosting a wine-tasting for beyondthepale blog and followers–that’d be fun as well as therapeutic!

  7. Judy Baker says:

    My H was on meds – but recently it only made her angry and focus on the anger FOREVER. . . so I gently took them away. Now, no meds and it’s trying, but at least the anger is gone.

    • Jorja says:

      judy, can’t imagine life here without meds. that will never happen. she has had some meds that she reacted poorly to and anger was a symptom, but others she has done well with and without them we would all be at our end, all the time!

  8. Jon E. Lewis says:

    Great post! We all walk a tightrope.

    Another takeaway for me from your post is that we all take the simple, easy things for granted. I see it every day in my practice. In a split second, someone has lost a limb, hurt their back, or even, been killed. Speech is another one of those things. My father is EXTREMELY vocal. I cannot tell you how much he likes to talk. It’s nauseating.

    However, five years ago, when he suffered a stroke in the office, he couldn’t even tell us what was wrong. It was so frustrating – for him and me. It took him a couple of months to learn how to speak again.

    Just another one of those things we should be grateful for.

    • Jorja says:

      jon, this is so true. both of my grandparents were killed instantly in a car accident, just moments after leaving my home, when i was nine years old. life, speech, mobility, you name it, all are blessings, even when the speech comes in the form of incessant and sometimes worrisome phrases like the ones i get from MH! we all have much to be grateful for! thanks for commenting!

  9. Judy Helfand says:

    I have been following the comments, so enlightening. This all makes me feel “old.” By that I mean, you and I both know that I am old enough to be your mother. I am nearly 61 and you, I believe, are around 42. I had my first miscarriage at 19! What I want to express to you and the other mothers/fathers who have children “on the spectrum” is this: if we have not walked in your shoes it is impossible to comprehend your day to day life.
    You and I have talked about the forever factor…so little is known about autism spectrum disorder. Do you know that I still have my 1976 edition of Benjamin Spock’s “Baby and Child Care”? Do you know that the word “autism” is not to be found in this edition? In fact, in section 387 he discusses rhythmic habits and admits that we don’t have answers but some ideas. Basically, he tells parents to pad the crib to keep the baby from bruising himself. (You really need to read the whole section.)

    From August 1971 through September 1972 I worked as a teller for Wells Fargo Bank in Pasadena, CA. One of my regular customers was William Christopher (Father Mulcahy of M.A.S.H). You may know him from the book he authored with his wife “Mixed Blessings.” It is about their son, Ned, who is now about your age!
    Every week Mr. Christopher would come into the bank with Ned. To all of us Ned was a sweet little blond haired 3 year old…who would religiously run to the American Flag, which stood in the corner of this large office, and he would wrap himself up in the flag. He never talked to us, even though we would say hello. We knew nothing and we suspected nothing…but I have since learned that Ned is autistic. I have recently learned that Ned was fascinated by flags and he would demand to be told the name of every flag by shouting the word “flag.”

    I wish for you some peace, real answers…and understanding.

    • Jorja says:

      judy, yes, i know you are old enough to be my mother and that is possibly why i cherish your comments and your care. this spectrum, this disorder…and whether or not MH even falls under it are all truly a mystery. it all comes back to the simple fact that she is who she is, she will do what she does…but ultimately, she is mine and i love her. it may wear me so thin that i think i will break into a million pieces, and believe me, sometimes i feel that frail, but the best peace i know is that i am loved and therefore i can love in return. she is a hoot, i wish you could meet her! thank you, thank you, thank you for your love!

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things to make you wonder~

“I am a frayed and nibbled survivor in a fallen world, and I am getting along. I am aging and eaten and have done my share of eating too. I am not washed and beautiful, in control of a shining world in which everything fits, but instead am wondering awed about on a splintered wreck I've come to care for, whose gnawed trees breathe a delicate air, whose bloodied and scarred creatures are my dearest companions, and whose beauty bats and shines not in its imperfections but overwhelmingly in spite of them...” Annie Dillard

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