Wednesday Came and Went

Charlie returning from a walk We're never, and can never, I think, be entirely sure how much Charlie understands of what he hears. Ever since, years ago, our dear friend Mike chided Jim and me for speaking about Charlie in the 3rd person in front of him, we've tried our best to "presume competence" and proceed as if, even though Charlie may not understand every exact detail about what we are saying, he certainly picks up on signs of emotion, stress, worry, anger, concern.

Wednesday morning in our little household was rough, I'm not gonna sugarcoat it. It started off with what I wanted to take as a good sign, Charlie awake at 7am, just like he usually does on school days. The three of us packed into the white car and took our morning spin, stopped at the pediatricians' office to drop off a form from Charlie's school, bought breakfast. In the car, Charlie was "no no no" to a walk and he ran in and boom, boom, boom.

We all three went out and walking and Jim and I talked over strategies, how to better orchestrate the out-the-car-to-inside transition. Charlie was soon calm and we thought to give him a quiet morning, Jim slipping off to the library to work and me sitting by as Charlie typed words, per my dictation, into the YouTube searchbox. He told me "all done" when he'd had enough. I took the computer to shut off the videos and somehow it all went boom, boom, boom again, but longer, but messier. Jim came directly home when I called and this time he and Charlie walked off as I set to cleaning up all that got tossed and spilled on the kitchen floor.

When all is done and I record each and every one of these "neurological storms." We've been trained to take, ABA-style, "ABC data" (= antecedent, behavior, consequence). Talking to Jim, I really couldn't think of any one things that set it off. 

Except. We both had noted that Charlie's lip is healing, but slowly. Impossible to get him not to touch it and, therefore, inevitable that it'll take longer than it might to get better. If it were my lip that was like Charlie's, I know I would't be too happy; Wednesday morning, he only picked at his food, always a telltale sign that something was amiss. Too, it's likely that the antibiotic (the doctor, understanding the challenges of getting Charlie's mouth to heal, prescribed a strong one and the pills are, in Jim's parlance, "horse pill" size) is doing something uncomfortable to Charlie's stomach. 

And there's another reason, equally hard to pin down and substantiate, but very real.

After the second walk, we went to see Jim's mother. Since the summer, Charlie has been a champ to accompany us on weekly visits into her room where the TV news is always on low above her bed. The nursing home is located in an old red brick mansion, with a great room stuffed with chintz-print furniture and a player piano (and, during Christmas, a child-size Santa Claus mannequin). The walls are bedecked with black and white photos of old film and TV stars, Jackie Gleason, Groucho Marx, James Dean, Fred Astaire and Ginger Rogers, Cary Grant. The air is close and heavy, and scented.

Wednesday the big doors to the great room were shut and we could hear someone singing. Charlie refused to go in. A couple of months ago, he'd once walked in and seen a white dog (most likely a therapy dog) and ran out faster than fast. He's ever since entered warily and, yesterday, not being able to see what was going—not to mention the noise—he would not go in. So Jim walked in and Charlie and I went back across the parking lot to the car. Jim came out and I went in. 

I had to walk through rows of patients on the couches and in folding chairs, heads turned to the sequin-shirted, dark-haired crooner who looked right at me as I tried (and failed) to slip past. (Frankly, Charlie was pretty smart to say no to coming in to hear it all, sorry Mr. Crooner.) 

Jim's mother was not in the great room. She does not leave her room. You can read about her here on Jim's blog. She is not, she is not, well, "in the throes of 'dementia,'" on top of fifty-five years of emotional suffering. 

We can't know, as I wrote, but Charlie must know that things are not right with Grandma. They have not been right for a long time and Charlie, however much he does or does not understand of Jim's and my hushed and pained exchanges, he knows that something is not as it should be, that there's a reason (as I say to him while we wait in the car) "dad is very sad." 

Once home, Charlie hopped out for a final, third walk with Jim. He signed a couple of thank you cards (I still have to write the notes, may as well as get his signature on them first), went to his room, went to bed early. 

Jim and I know that, last week when Charlie told my mother-in-law "Merry Christmas, Merry Christmas," that was the last time Charlie will see her. Amid every struggle–yesterday morning and otherwise—we're proud that he, her youngest grandchild, with many more challenges than his cousins, has made these
visits, told her week after week, "hi Grandma. Bye Grandma, bye." That he's stuck with her—as we're always going to do with him.

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Comments
27 Responses to “Wednesday Came and Went”
  1. It is so hard to remember to “presume confidence,” but it truly is the best way to remain connected. I hope you have a beautiful New Year!

  2. emma says:

    A lot of people seem to have difficulty transitioning from car to somewhere else. I wonder if it’s that it provides a kind of “contained world”, and also, very importantly, on the move world. You can see things going on from the car, but without getting involved?
    It’s a sad and touching post to hear about your mother in law, how Charlie has visited so often and has stuck by her through all the difficulties.
    To a peaceful-easy-feeling New Year.

  3. farmwifetwo says:

    I’m going to ask, what I’ve wanted to ask for a very long time… Why have you allowed the behaviour?? One day he’s going to seriously harm you and/or someone else. You, Susan, Maddy… I too was told “Ignore it and it’ll go away”… BULL!!! All that meant was my elder son went after the younger, that I couldn’t allow.
    We started using the word “no” the moment our boys could crawl. When my eldest was 2, we were at the Dr’s and he got into the cupboards and I told him “no” and he stopped. The Dr was amazed that he knew the word… considering he wasn’t dx’d with Mild PDD until 2.5yrs of age and was completely non-verbal until he was 3.
    Headbanging, destruction in general started at 18mths. We waged war against it until the child was 6. He threw things, I walked him over to the item, hand over hand picked it up and returned it to the toy box. He banged his head he got picked up and moved to the middle of the living room. He left a lovely hole in the wall in their bedroom at 3, that I finally had repaired when he was 8. Made an excellent reminder to both of us what the consequences of not dealing with the headbanging were. When he got old enough for time-out, tv turned off, DS taken away, we started at 5min and a timer.
    Headbanging – perma bruise – finally ended around the age of 6. It completely vanished around 8… so did the Level 10 meltdowns.
    Now that DS, that bicycle can vanish for days on end. If he’s mouthy when he gets home from school he gets ONE warning and it’s gone… usually until the next night after school.
    Little boy isn’t agressive but he’s no angel. He too has learned the word “no”, about not being allowed to use the computer if he’s bad… and he’s “non-verbal”… verbal skills of a 2yr old at most.
    If you can teach an NT 2yr old to behave, you can teach a child with autism.
    You fed the behaviour. You didn’t make him clean up the mess before he got his walk. He’ll know for next time…. “Throw hissy fit = get what I want”.
    I don’t think that’s what you wanted to teach him… was it???
    I just hope I NEVER read a post by someone that says something horrible has happened… But if I do, I won’t ever blame the child.

  4. autismvox says:

    @Farmwifetwo,
    We have NEVER “allowed” the behavior. We have not “ignored” it—we have been addressing it for years through many means. There have been times when the behavior has abated and lessened, but this is not one of those times. In particular, Charlie’s entrance into puberty has led to an increase in behaviors. Currently medications and the structure of school have been the most helpful, but, being on vacation, the latter is not present.
    Again, we have NEVER “allowed” this behavior.

  5. Judy T says:

    @farmwifetwo,
    Your post is shocking. You post as if you are THE expert with autism; you are at the beginning of this journey – your children are young – you have NO IDEA what will come.
    A child’s behavior in early childhood is no indication of what it will be like in adolescence. You can be all self-congratulatory about how you’ve conquered the behavioral issue, but you don’t know what may come in the future.
    To judge other parents, especially parents who have been as devoted as Kristina and Jim, when you DON’T KNOW (no one can know anyone else’s life), is WRONG! Autism parents should be supporting each other, not bashing them. Furthermore, you might want to take note that it would serve you better to learn from other people’s experiences, rather than to sit self-righteously in judgment and be so sure that *you* would never be in their position. You may not be so much “better and brighter.” You may be in their position sooner than you think, and since you have spewed so much venom at others, you may have far less support.

  6. autismvox says:

    I forgot to note that Charlie cleaned up after he got back from the walk. But first, he needed to cool off.
    Adolescence has been a whole new game, I have to say—-I did not want to acknowledge that when Charlie was younger, but it’s been (I guess this has become a favored word of mine) “interesting.”

  7. autismvox says:

    I forgot to note that Charlie cleaned up after he got back from the walk. But first, he needed to cool off.
    Adolescence has been a whole new game, I have to say—-I did not want to acknowledge that when Charlie was younger, but it’s been (I guess this has become a favored word of mine) “interesting.”

  8. Jill says:

    It’s easy to condemn others without knowing the whole story. I feel honored that Kristina shares as much as she does about her life with Charlie. Having taught autistic teenage boys I am well aware of the kind of “behaviors” that go on and I know Kristina and Jim are tremendously challenged every day by trying to keep Charlie safe and help him learn how to live in the world. It’s clear they love their boy dearly and it’s further clear that they don’t encourage bad behavior on his part. To say that Kristina was at fault for Charlie’s agitation and destructiveness is spiteful and WRONG.
    I’m shocked that another parent of an autistic child would be so callous.
    I, for one, think Kristina is a wonderful mom who has sacrificed much to give Charlie a good life.

  9. Niksmom says:

    Thank you, Judy T, for saying so much more politely and eloquently qhat i would say to @farmwifetwo.
    Kristina, thank you for sharing the unvarnished truths of life with Charlie and your & Jim’s constant efforts to meet him where he is, to try to help him find new ways of interacting and communicating.
    I wish you all peace and continued love in the coming year.

  10. Niksmom says:

    oops, that should read “what I would say…” :-p

  11. Kevleitch says:

    I’m simply appalled at farmwifetwo…not at just what she’s said but the utter coldness and inhumanity. Mostly though I’m appalled that she still can’t understand whats right in front of her nose.
    Keep on keeping on Kristina.

  12. Kevleitch says:

    I’m simply appalled at farmwifetwo…not at just what she’s said but the utter coldness and inhumanity. Mostly though I’m appalled that she still can’t understand whats right in front of her nose.
    Keep on keeping on Kristina.

  13. Hai Dang says:

    I wish you, Jim and Charlie have a Happy New Year. Changes to daily routine are not good for all children especially older children on the spectrum. I am counting days until my children are going back to school. Reading your post, I can see Charlie has been verbalized more (“no no no” to a walk; “all done” when he’d had enough; “Merry Christmas, Merry Christmas,” to grandma) to address his wants and desires. It is a good sight. You are right about the emotions Jim is going through right now with your mother-in-laws being so sick. Jim’s sadness does effect Charlie emotional being since Charlie does not know how to comfort his father. I am thinking the many bike rides Charlie likes to do everyday with Jim is a way Charlie wants to spend time and connect with dad. Charlie has emotions and feelings just like everyone else. I think he tries his best to address them in his own way. I do agree we need setting limitation (I know that you both loves Charlie enough to do it for him all the times) for outburst behaviors. But we have to realize Charlie is hurt for not being able to verbalize his thoughts and feelings to the people he loves during their difficult times. My new year wish for Charlie is he will learn to talk more in a new school in the coming years. Happy New Year! Charlie.

  14. Hai Dang says:

    I wish you, Jim and Charlie have a Happy New Year. Changes to daily routine are not good for all children especially older children on the spectrum. I am counting days until my children are going back to school. Reading your post, I can see Charlie has been verbalized more (“no no no” to a walk; “all done” when he’d had enough; “Merry Christmas, Merry Christmas,” to grandma) to address his wants and desires. It is a good sight. You are right about the emotions Jim is going through right now with your mother-in-laws being so sick. Jim’s sadness does effect Charlie emotional being since Charlie does not know how to comfort his father. I am thinking the many bike rides Charlie likes to do everyday with Jim is a way Charlie wants to spend time and connect with dad. Charlie has emotions and feelings just like everyone else. I think he tries his best to address them in his own way. I do agree we need setting limitation (I know that you both loves Charlie enough to do it for him all the times) for outburst behaviors. But we have to realize Charlie is hurt for not being able to verbalize his thoughts and feelings to the people he loves during their difficult times. My new year wish for Charlie is he will learn to talk more in a new school in the coming years. Happy New Year! Charlie.

  15. autismvox says:

    I am unutterably thankful that everyone takes the time to read and comment here. Really, adolescence has caught us by surprise, and I just wish it had not begun early for Charlie. When I look around at kids his age, they certainly do not spend so much time with their parents as Charlie does with his; due to everything, when Charlie is with others, the kinds of interactions he has are limited due to his communication challenges. — @Hai Dang, thank you for that new year’s wish, I think I will make it ours too for sure!

  16. Jen says:

    Kristina, perhaps your ABC data isn’t going to reveal what you need to see. We don’t always see what we need to see from ABC data. With that said, farmwifetwo, whatever is maintaining this behavior may have absolutely nothing to do with going out for a walk. It may be something else entirely, and maybe an FA is needed to figure it out. If it were so simple as, tell him not to bang his head, that would be great, I for one would probably be out of job. Since it’s rarely that simple, I’m going to head out the door to work.

  17. Regina says:

    Dear Kristina,
    Please share with Jim our condolences about his mother- we’ve been there; it is very sad and very hard.
    I hope that the new year brings better to them that look to that, continuing good to them that feel they have that and health and happiness to all.
    Warm regards.

  18. Elise says:

    I too wanted to add my condolences about Jim’s mother.
    May you three have a peaceful new year.
    BTW: I don’t know if Charlie eats dairy but when my youngest is on a strong anti-biotic we take him off. Dairy seems to aggravate the stomach upset. Alot of plain carbs seems to help.

  19. Elise says:

    I too wanted to add my condolences about Jim’s mother.
    May you three have a peaceful new year.
    BTW: I don’t know if Charlie eats dairy but when my youngest is on a strong anti-biotic we take him off. Dairy seems to aggravate the stomach upset. Alot of plain carbs seems to help.

  20. Evan Tasch says:

    Another voice to the chorus expressing condolences about Charlie’s grandmother and sheer admiration for the intelligence and humanity both you and your husband bring to the most difficult(and rewarding) job of raising an autistic child. All the best in 2010!

  21. Louise says:

    Adolescence IS a whole new ballgame – like moving from whiffleball to Aussie Rules Football. (And this is from the mother of an NT child who could verbalize his internal states pretty well since age 2.)
    Withdrawal and sudden, unexplained surges of emotion, rages over the tiniest things, become more prevalent. Once again, all I can recommend to help you as the mother of a puberty-bound boy is the book “Why DO They Act That Way?” It’s really a neurobiological tour of the most recent information on the changing adolescent brain.
    Does Charlie have any meditative techniques at his disposal? Even a brain-entrainment tape might help him. He seems to have more going on inside of him than he can express, and is surrounded by stimulation and emotions that overwhelm him. He also seems to be a Star Trek Empath in his ability to feel the emotions of others.
    When a person develops the power to still the mind, calm their own fears, to be able to stand apart from all the demands of the external world, thet have rceived the greatest and most powerful mental tool ever. I do think some form of meditation would help him immensely, as it helped Jake whether adolescence.
    And Charlies already takes a meditator’s delight in bike-riding and ocean swimming.

  22. autismvox says:

    I am going to think about this, Louise!
    Maybe more like T-ball (Charlie did this in Challenger League years ago—always tried to use the wrong end of the bat to tip the ball of the T) to Aussie Rules Football!—“Withdrawal and sudden, unexplained surges of emotion, rages over the tiniest things, become more prevalent”—yup, a combination of all of those has been occurring throughout every day, especially during this vacation.

  23. Rose says:

    Ben will speak his displeasure if we talk about him in third person in his presence.

  24. autismvox says:

    Thank you to everyone regarding Jim’s mother. He went to see her again tonight. She is otherwise along in her room at the nursing home.
    Warmest wishes, friends, I, we, can’t thank you enough!

  25. Regina says:

    I usually cringe from simple aphorisms to complicated situations, but this is one that probably many have heard or some paraphrase, and seems to apply in many situations in life,
    “…give us courage to change what must be altered, serenity to accept what cannot be helped, and the insight to know the one from the other.”
    Reinhold Niebuhr 1937
    However, that insight, in my experience, is most apt and meaningful up close and personal, and is not inconsistent with a functional analysis of behavior, either.
    Yeah – we have a 21 year old daughter and our younger autistic daughter. It was one rocky whole lotta “whoa what’s going on” for awhile with our typical daughter who was a handful but a doll too when younger. (Things have been on an even keel for the past year or so, and we have an excellent relationship.) So far, knocking on wood, we have no complaints with our younger, and I hope there are none from her in our direction. But tomorrow could be the same or in a cocked hat. Hopefully, depending on circumstance, I will have insight, courage and serenity – all which seem to be useful entities in parenting anyone and this grand party we call life.
    Happy New Year.
    PS- I am curious as to whether you have that exercise bike? With the wet weather, my younger daughter and I were having a grand time with an elliptical trainer at the local sporting goods store, while my husband was getting nervous about the state of our post-holidays bank account [smile].

  26. Club 166 says:

    I have a hard enough time trying to figure out what Buddy Boy is talking about sometimes in his now highly verbal state (Pokeymon references flow into rants about his sister, flow into questions about nuclear fallout, flow into talking about tunnel boring machines etc.), that I couldn’t begin to think how I’d have a clue if he wasn’t verbal. I also couldn’t imagine the frustration that would be taking part on his part if he wasn’t verbal.
    Perhaps since puberty came early, it will finish early, too? One can hope.
    Happy New Year! Best to all of you in the coming year.
    Joe

  27. Club 166 says:

    I have a hard enough time trying to figure out what Buddy Boy is talking about sometimes in his now highly verbal state (Pokeymon references flow into rants about his sister, flow into questions about nuclear fallout, flow into talking about tunnel boring machines etc.), that I couldn’t begin to think how I’d have a clue if he wasn’t verbal. I also couldn’t imagine the frustration that would be taking part on his part if he wasn’t verbal.
    Perhaps since puberty came early, it will finish early, too? One can hope.
    Happy New Year! Best to all of you in the coming year.
    Joe

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