Archive for February, 2010

Nag, nag, nag

     Every day I walk a tightrope. Sometimes I fall off on one side; sometimes the other. I’m afraid I fall off more on one side than I should, and have visions of C, all grown up, sitting in a therapist’s office, talking about his Mother (definitely “Mother” with a capital “M” in this scenario). Yet the other scenario is perhaps even worse: C all grown up, wondering why I didn’t do anything to help him learn what he needed to know.

     So nearly every day, on the drive home from school, I listen to C’s stories of interactions he had with other kids (and am thankful he is able to tell me about them, fragmented as they sometimes are). I gently, nicely try to guide him toward learning how to navigate this mostly neuro-typical world in which we live. C needs to know that when he continues to actively befriend what I call a “frienemy,” he does something very kind but also sends the boy a message that he will tolerate the taunting and torment that occurs daily and is coupled with confusing “let’s be friends” messages. C also must learn he shouldn’t stare out the window at the neighbors and that perhaps everyone that walks down our street isn’t interested in seeing all 103 of his Mario trading cards.

     Somehow natural consequences, arguably the best teaching tools, don’t always sink in completely and clearly. They don’t transfer to the next similar situation. There is little generalization between events. So I try to explain it to him. I feel as though I’m acting as C’s navigator in the ways of this admittedly crazy world we call social skills, but my mind tickles with the possibility that the message comes across as something altogether different. I worry that explaining certain – what I used to call – “universal truths” might sound as though there is an underlying critique of C and his ways, and I never, ever want to send him the message that the way he is wrong. He couldn’t be more right.

      So what’s a parent to do? I suppose the only thing she can do – tread lightly, Mother, tread lightly.

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February 25, 2010 at 5:37 am 5 comments

Innocence gained

     Sometimes I forget just how innocent C is. It’s definitely part of his charm and is one of my favorite things about him. He balks when he hears a swear word on tv, has no desire to see most movies, and is completely oblivious to the boy-girl stuff that is starting to go on already in third grade. I remind myself constantly that in many ways, I have a 5-year-old almost 9-year-old on my hands, and that often makes sense of many things he says and does.

     What saddens me, however, is just how not innocent other children are. While waiting for the morning bell to ring today, I spoke with a girl whose family just moved here. She’s a sweet girl who has been particularly kind to C. I asked her how she liked it here so far, and she said it was way better than her other school because everyone was drinking and chewing tobacco there. I tried (and probably failed) to contain my surprise as I listened to her describe such an adult topic with a comfort level I haven’t even gained as an adult. Made to face mature issues at far too young an age, this girl still seems to have an air of innocence about her, which gives me hope for her future.

     I suppose I’ve lived a sheltered life, and for that I am grateful. Yet it was probably easier to do that where and when I grew up than it is in the here and now. I can only hope that C’s awakening to the not so nice ways of the world comes as slowly as my own.

February 19, 2010 at 5:44 am 4 comments

Ouch

plus

Equals:

Coupled with:

“I FEEL LIKE I’M GOING TO DIE!!! I WANT TO LEAVE ARIZONA!!!! I DON’T LIKE CACTUSES!”

February 16, 2010 at 10:28 am 4 comments

You’ve got to have heart

     Someone recently told me, in regards to my own health (see here), that I had walked through a door that was now closed behind me. I couldn’t get that thought out of my head – is that what has really happened? Am I destined to take more pills than I care to count, wonder what’s going to set my heart off from moment to moment, and feel far older than I truly am?

     Then I met my new doc, who told me that I am like a boat. I’ve got a zillion holes, and water is pouring out more rapidly than my other docs can control. The traditional medical establishment is merely trying to use non-waterproof band aids on those holes instead of actually fixing the problem. So this new doc, whom I’m half in love with merely because he can help me, is going to rework me from the inside out.  

      It’s already started, really. One IV treatment settled my heart in a way it hasn’t settled in well over a month. I could actually take a deep breath without my heart catching the top of that breath with a shudder, and my heart stayed calm during the night when it is usually the most active. I am by no means healed yet, but that simple gift of a few days and nights of peace in my chest gave me more hope and faith than I’ve had in a long time.

     I’m reminded of the hope and faith I lost, and then found, when we started to try to help C with his health issues. We made the rounds of specialists over and over again – the neurologist, the developmental pediatrician, the geneticist the gastroenterologist; you name it, we saw it. No one could give us any answers beyond getting C developmental therapies, which we had already been doing for years. Finally frustrated with traditional Western medicine, I found myself looking outside that circle, something I had never considered before.

     We found success outside that circle, with a DAN! doctor (Defeat Autism Now!). Say what you will about the admittedly controversial idea of “defeating” autism in general, this doctor helped. I wasn’t thinking about the moral ramifications of “curing” an entire group of people who possess what some call a gift and some call a disability, which is what the discussion of DAN! doctors’ methods often turns into. I only wanted to help my child, and not so much with his autism as with his body, which I knew was sick. Our DAN! doctor didn’t do anything scary or even particularly outside the box – in fact, she worked closely with C’s gastroenterologist to help treat a GI problem we didn’t even know he had – she just prescribed to him a few well placed supplements that truly changed C’s health and life.

    Based on that, is it any wonder I would turn outside the establishment for my own questionable health? I find it interesting that so many of C’s supplements are now ones I’m taking, which simply furthers my feeling that I am on the right path. C and I are cut of the same cloth and pattern. He is me and I am him. So off I go on my own biomedical treatment plan with the hopes that it will make me as well as C is.

February 9, 2010 at 2:22 pm 7 comments

Monkeys jumping on the bed

     C is a pretty happy kid, or, as we like to say, he’s a pretty happy kid – except when he’s not. He can whine with the best of them, and despite our consistency in not changing an answer once we give it, he still feels the need to push the issue at least a dozen times before completely losing it when the answer remains no. Sometimes I fantasize about sending him off to live with the Duggar house (if you don’t know who they are more power to you) for a week or two for behavior boot camp, but then I remind myself that autism lives at our house. There’s a reason for troubling behavior when it happens. I may not always know what triggers it, but there is most definitely a significant trigger and it’s not just about bad behavior. 

     This night, C rose to new heights of unhappiness, and it pains me to say that for the first time ever, I was actually afraid of my child. Scared that he would hurt me, I was left fretting about what his teenage years might bring if this is what we’re getting at 8. The multiple tantrums that started shortly after I picked C up from school seemed to only escalate in their severity and, frankly, violence.

     If you really knew C, you would be stunned. Aside from the fact that he’s a mere 46 pounds and I am, well, not 46 pounds, it’s uncharacteristic for him to go to this extreme. Fortunately it’s rare and unusual, and probably takes him by surprise as much as it does us. C’s teachers would not believe it was possible that a child who behaves beautifully at school could be such a Jekyll and Hyde at home on occasion. So much so this evening that even Husband, who always thinks we are great parents, said he felt like crying. I know it’s bad when it gets to that point. Actually, it’s never made it to that point before tonight.

     We have a plan, though. As C and I snuggled in his bed before lights out, I suggested some things he could do when he gets angry that won’t hurt himself or anyone else. He didn’t want to hit his pillow because he didn’t want to hurt its feelings (and have the now anthropomorphized pillow give him bad dreams). Instead, we decided, when he feels as though he’s about to lose control, he will go into his room and jump on the bed. That’s the plan for the moment, and I think C felt empowered to have a solution that he liked. And hopefully, it will diffuse the situation enough to keep C, and everyone around him, safe.

February 5, 2010 at 5:38 am 6 comments

Nearly wordless Wednesday

A very happy boy on Christmas morning. The missing teeth lend him the air of a jack-o-lantern. My little pumpkin!

February 3, 2010 at 6:12 am 5 comments

It’s a new year

     I vividly remember an email from an old friend many years ago in which she told me she could hardly wait for her son to wake up in the morning so she could hang out with him. That statement stuck with me throughout the years, mostly because my favorite time of the day is about five seconds after C falls asleep. The guilt I feel about that has weighed heavily on me at times. What is wrong with me that I don’t revel in parenting as much as other people do? 

     Lest you get the wrong picture, I have to say that C is just about the most delightful child to ever walk the earth, and I wouldn’t trade him in for any other kid on the planet. Every grown up that meets him adores him, and I would venture to guess that nearly every single teacher in C’s school knows him by name. I can’t even count how many staff members, many of whom I don’t even know, have told me how much they love C. Last week, a substitute teacher stopped me in the hall and said if all kids were as joyful as C, she wouldn’t have retired. That is a pretty amazing testimonial to just how fantastic he is.

     Yet somehow we’re missing that spark at home sometimes. We enjoy C, don’t get me wrong, but other things get in the way. Health concerns, therapies, behavior challenges and IEP details often threaten to take over our world. So much of the day is spent keeping the very specific, very necessary routine that we often miss just living. And missing that seems to translate into missing some of the joy that should come with raising children.

     So my new year’s wish? While I don’t anticipate ever sitting by C’s bed in the morning anxiously awaiting the moment his eyes open, I will continue to hold my old friend up as the kind of parent I am trying to be. I hope to move past the routine to find that the joy is always there even when I seem to have lost it – I just need to remember to revel in it.

February 2, 2010 at 5:54 am 8 comments


It’s all autism, all the time.

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