Archive for May, 2008
One of C’s favorite places to go is the post office. Years ago, we lived in a town where people took a number instead of waiting in line. C would go from person to person, asking them what number they were, checking the electronic counter on the wall, and then telling them how many numbers they had to wait. It was a town with many senior citizens, and he charmed them all as we waited in our very busy post office. Inevitably, people would ask how old he was, and then they’d ask me if I held flash cards in front of him all day. I rarely explained.
I hadn’t taken him to the post office in our new town until today. It’s kind of boring; no numbers to look at, just a long line full of cranky people. Yet he still managed to work his magic. He talked to one man about “passing first grade” and moving on to second. At one point, he whispered to me, “Those three ladies behind us are pretty ladies.” They all giggled with delight.
The highlight, however, is the post office boxes, because they have numbers and go in order. It’s a thrill to say the least, and he spent many minutes running back and forth looking for numbers, asking people their box number, and proceeding to find it for them “in case they couldn’t, Mommy.” On the way out, he asked if he could come back with me every time I went. When I answered that of course he could, his reply, edged with thrill most people reserve for moments when they win the lottery, was, “COOOOOOLLLLLLLLLLL!”
People have found this blog in various ways. About 50-75 people visit daily, and for the most part, I have no idea who they are. But they leave a trail; a trail that makes me wonder if they are getting what they need from “What We Need.” The website keeps track of the google/yahoo/[insert your search engine here] searches that land someone here at my humble online abode.
There are comical searches, such as “he’s not giving me what I need in bed,” “does God say touching breasts is wrong?” and “how to present a giraffe to a preschool teacher.” There are ones that make me wonder how in the world they ended up here, such as “we need one car to take him to the city” and ”why babies make spit bubbles.”
The ones that really get to me, however, clearly come from people who need something from their search. These searches are probably like the desperate ones I used to put in early on with C when we had no idea what was going on with him. “Help, I think my child has autism.” “Is sensory integration disorder considered autism?” “Preschool street signs obsession.” “Hypotonia, sensory integration, failure to thrive.” “How do I get my child the help he needs?”
I imagine a parent, late at night, exhausted but unable to sleep, perhaps worried about an infant or toddler who was premature but hasn’t caught up like preemies do. They are wondering why their child lines up his trains in perfect order, why their child seems to have constant tummy aches, or why their child opens and closes doors continuously. It seems that some are wondering if the first diagnosis of one thing will really end up being autism after all. It’s a scary time for a parent, because while I don’t think we expect our kids to be perfect, we expect things to be perfect for our kids.
While raising C has been nothing like what I expected it would be, I wouldn’t change him for anything. He has so many gifts, so many amazing qualities, and so much to offer the world. I can’t say it’s all been easy, not even close. But the benefits far outweigh everything else. So whoever you are, sitting out there, staring at a computer screen and wondering what it all means, I hope you’ve gained some comfort here.
After a particularly distressing evening with C, one where I am striving to keep my patience and calm (and not particularly succeeding), I always enjoy going into his room for the last look after he falls asleep.
In sleep, he brings me back from frustration to calm. His angelic little face resting on his pillow, blanket and stuffed dog Bill wrapped up in his arms do wonders to make me forget the rest of the evening. No trace of his screaming, defiance and tears are left. I cease to wonder how we’ll get through this latest behavior challenge and gently brush my lips across his cheek. And smile.
When C was very little, he was extremely sensitive to noise. I used to take him out for a walk while Husband ran the vacuum. I’d take the mixer into the bathroom and close the door to use it, but C would still scream. The blender was out of the question and I’m pretty sure my hair looked bad most of the year because I tried not to blow dry.
These days we’re down to fewer things that bother him, although I’m not sure the problem has grown less as much as he’s learned not to show a response. The dog going nuts at the doorbell or the garage door still spins him into sensory overload orbit, the blender sends him skittering to his room, and he prefers to be far away when the mixer is in use.
It leads me to wonder whether he’s growing up or growing out. Is he dealing with these issues better or are they simply becoming more complex and less obvious? Are the gains in age and skills bringing the issues to new levels also? Is he internalizing more and is the outward response to sensory stimuli hidden away somewhere far more damaging than letting it out with a scream would be? Babies are so obvious about things; they don’t like it and they cry. Seven year olds are far more sophisticated with their emotions. I’ve seen C hide and squelch a sob when his feelings are hurt, so I wonder if he’s doing the same with sensory stimuli. Hiding and coping are not exactly the same thing. On one hand I know this will serve his outward appearance to the world, on the other hand I wonder what it will do to his inside self.
On this eve of the Last Day of School, I must give a shout out to some school folk. First, to C’s teacher this year, a woman I have started calling “The Divine Ms. M.” I’m not sure if she’s old enough to know the reference, but it suits her. When she was discussing a sentence with the class and asked them to tell her the action word in the sentence, she was only slightly surprised when C raised his hand and told her not only was there an action word, but there was an adverb in there as well. She covered well, and believed C when he told her adverbs are words that usually end in “ly,” even though she had to take a moment to remember back to her own school years.
And then there’s Mrs. H, who set up C’s favorite PE activity, the parachute, only to have the kids interrupting her to ask her all sorts of completely irrelevant questions. It prompted her to tell the kids they couldn’t ask her anything unless it was about the parachute. C bravely kept his hand up, she sighed and called on him, and he said, “There’s a Parachute in Colorado.” And he knows exactly how many miles Parachute is from Grand Junction, too.
I can’t forget Mrs. R, who delights the kids with the lovely colors she wears, and even further thrills them by having her hair a shade of something between a red and a purple. She stands out in a crowd, and believe me when I say it’s because of who she is, not what she wears or what color her hair is. But C, as we were writing out Christmas cards this year, leaned over and whispered in my ear with glee, “She has purple hair, Mommy!!!!” It’s pretty much the coolest thing ever.
And Mrs. S, a speech therapist who summed up C’s very self in a single paragraph of his IEP; Mrs. G, who manages to do physical therapy with the kids without them even realizing they are doing work; Mrs. M, who makes the kids love music as much as she does; the aides that wave at him every morning as we drive in….I could go on and on. C is in a place where it seems everyone knows his name; all the aides, the custodian, the other teachers. What more could a parent ask?
Mrs. M, the beloved principal, is a woman who somehow manages to instill control seemingly effortlessly while engendering great love from the kids. After Science Night, complete with a live alligator, a snake as thick as a tree trunk that all the kids were allowed to touch, and robot cars, I asked C what his favorite part of the evening was. “Seeing Mrs. M,” he said. That about says it all.
And to all those other wonderful people, at his current school and the many behind us, to all those people who have helped us get him this far, I can only say bless you and thank you. It really does take a village to raise a child, and we have an awesome village.
We held off on letting C use the computer or play video games for a long time. We knew once he started, there would be no stopping him. Fortunately, because he is a very young 7, he has no interest in or knowledge of the kinds of video games everyone complains about. His loves are Pac-man, Galaga, Dig Dug and Pole Position. The oldies, but goodies.
Now, anything with technolgy is of interest. He reprogrammed our last remote control so everything (including the words you see on your guide channel) was in Spanish. He did so many things to the remote control that we couldn’t figure out, I felt like I had a direct line to the cable company help desk. At one point the guy on the other end admitted he’d never seen anyone be able to do what C had done to our remote control without actually being an employee of the cable company.
When C discovered our cell phones, he was hooked. Letting him explore the cell phone became the motivation big enough to make him tolerate a haircut. He’d program in all sorts of non-existent phone numbers and send text messages of the alphabet straight to nowhere. The worst, however, was when Husband’s business manager told Husband he had $50 of not-work-related charges on his work cell phone that month. It took only a few moments to discover C had been downloading games from the internet onto the cell phone, something we didn’t even realize was possible. Husband’s phone became off-limits, and downloading anything, anywhere has now been strictly forbidden. Even worse, the next month, the charges were $70. We discovered he had not only downloaded the games, but incurred the monthly subscription charges for said games as well.
I see in the future being one of those really dumb sounding parents who say something along the lines of “Well, he was online, but we didn’t know he could be doing THAT!”
Every once in awhile, along comes a moment that reminds me how I have adjusted my way of thinking to fit with C’s, and it stops me in my tracks for a moment. A few weeks ago I was at C’s school putting some fliers in teacher’s boxes, and I happened to hear the morning announcements that day. The announcements include a mix of thoughts on building good character, the lunch menus, and which classes had perfect attendance the day before. When I picked him up that day, he was very excited to know I had heard the announcements that morning. We talked about it the whole way home while I tried to clear up his confusion about why, even though his entire class was there that morning, they hadn’t been announced as having perfect attendance by the principal. He still doesn’t believe me that she’s talking about perfect attendance the day before, so his confusion continues.
At least a week later, driving home from school, in the middle of a conversation about what he did during P.E. class, he asked, “Did you hear the whole announcements?” Without hardly a pause, I said ‘Yes, I did, the whole thing.” And on we went with the conversation we were having prior to the question. At least he went on with it; I was busy thinking how amazing it was I no longer needed clarification for a question like that. I knew exactly what he was talking about.
Then I started wondering if I should have asked him to clarify his question. Most people wouldn’t connect the question to a discussion had many, many days prior, and how problematic will that be for him later in life? Will others understand his snippets of conversations continued long after the conversations are over? Did I miss a teachable moment? I’m quite sure there was a connection to the conversation we were having about P.E. class, I’m just not sure what it was. But knowing C like I do, I can say without doubt there was some sort of segue for him.
We’ve always been thrilled when he makes connections between things – the most memorable was when he used to connect highway exit numbers with Presidents. “There’s exit 16,” he would say, “that’s Lincoln’s number.” Making connections between things is part of routine conversation and living in the world. C’s connections have always been a bit off the beaten path, but it’s something to celebrate nonetheless. Who knows what his connection was to the conversation long before, but to him I’m sure it was perfectly sensible.
I’m really not trying to be political here, because it’s not what I do, but C is intensely interested in the election all of a sudden. It has renewed his prior interest in heaven, and has now merged with his interest in Presidents. This morning’s conversation went something like this:
“Mommy, is that Barack Mogana on the tv?”
“Yes, C, it is Barack Obama.”
“Is he our new President? Did George Bush pick him?”
“No, the outgoing President doesn’t get to pick the new President. Barack Obama (probably) and John McCain will have to run against each other and the voters will decide who is the next President.”
“I hope Barack OBAMA will be the next President. I think he would make a very good President. I hope I’m President someday and that people would vote for me.”
“I think you’d make a great President, C. I’d definitely vote for you, and I think lots of people would.”
“Yeah. Mommy, when I’m in heaven will I meet the Presidents?”
“Sure you will, and you can ask them lots of questions!”
[Grins] “COOL! I didn’t know that. How did you know that? Did you learn it in school?”
Granted, it is the last week of school, but somehow I doubt C’s teacher has a lesson on heaven, the Presidents and the election planned.
Today was one of those days…you know the kind – where nothing seems to go right? From the moment I woke up, at 6:15, to the ear-splitting scream (via baby monitor, which apparently sits WAY too close to my ear) of “MOMMY!!!!!!!!!” to this moment of going to bed, typing hunt and peck style due to the bandaged and very sensitive finger, it has been a rough one.
After hurling myself out of bed and running across the house expecting giant aliens to be coming through the windows or at least some blood, I entered C’s room and found him sans UFOs or major injury to life or limb. “What?” I asked, not altogether nicely, yet still expecting some unseen disaster to appear before me. “Ummmm, I can’t sleep. Will you snuggle with me?” Now, darn, if this isn’t just adorable, and sometimes might even work, but not today. After a brief, few sentences with choice words about when it’s appropriate to yell at Mommy in the wee hours, I went back to bed. It was short lived, however. Only mere minutes after I fell back to sleep, came the next most pleasant way to be awakened, which is “I NEED A WIPE!” This one is a constant occupational therapist’s nightmare as it’s particularly difficult to teach a body unaware, fine motor skills challenged, can’t place hands on something unseen even if it is part of one’s body, and still doesn’t wash hands very well little person how to wipe his own bottom.
This was day two of C staying home with a cold. He’s not particularly sick, but if he overdoes it, he will be. So he’s been home hanging out with his humidifier and doing his best to drive me to drink. Today, however, determined to do something productive with him, I decided we’d do a craft together. We searched the Highlights magazine craft pages, and I picked out two crafts that seemed doable and for which we had supplies. Naturally, when presented with the two options, C picked out a third. I reiterated the two choices and he picked yet another one on the page. This went on until he had chosen every single craft on the page except the two I said we could choose from. At that point, I left him in his room.
Once he decided to participate, I asked him to get four pieces of recycled paper. Predictably, he said he wanted new paper, and I repeated the request for recycled paper. He went and picked out new paper anyway. Then he went back to his room. This went on for quite some time, during which I had the usual argument I have with myself while in the midst of these episodes. I recognize the need for bending to C’s idiosyncrasies, but I also recognize the need to have a child who is capable of completing a task I request. This is a difficult balance, and one which causes great struggle for me. C is so high functioning that at times I wonder if I’m too hard on him and am forgetting the challenges he faces; that recycled paper (with printing already on one side) likely bothers him on a deep sensory level. It sounds silly, but I suspect it’s true – the writing on one side probably distracts him, catches his eye, annoys him. And the constant need to debate, discuss, and argue is probably not only resultant of his feeling crummy, but also an effort to exert some control over his environment. So I feel like Bad Mommy lady, but I know giving in at this point will make all future debates and discussions far more difficult, so I hold my ground.
When he does come around, we happily sit down to make our cut out butterflies, and my punishment for being Bad Mommy is quick to come. I promptly send the scissor blade right into my index finger, and while the blood is dripping down my arm, I am reminded of this morning’s worry. It has come full circle, and I expect the UFOs to be landing out in the backyard any moment now.