What We Need

     C’s life is governed by rules, both his own and the world’s. He finds it difficult to prioritize, generalize and recognize when those rules should be broken. I wish I knew the magic formula to make a rule stick - as we’ve many times tried to create rules (don’t scare the dog) that just don’t seem to make it on his list of rules to live by. It’s his version of selective hearing, I guess.

     Recently he was reading me a book from school, and I noticed he was leaving off the word “and” when it came at the beginning of a sentence. I pointed out he was missing a word, and he said, “You’re not supposed to start a sentence with ‘and,’ so I’m not reading it.” The child has the memory of an elephant, and usually can recite exactly what I said, when I said it, what I was wearing when I said it, and what the weather was doing when I said it. So teaching C the subtleties of why it is okay to break a rule every once in awhile without opening the floodgates is a challenge for which I am sorely unprepared.

     There is very little gray in C’s life. We love to see those moments when the line between black and white has been blurred, but they are few and far between. Subtle humor and plays on words are often not in C’s realm of thinking. It allows for a different kind of humor to play out - one where we enjoy his literalism, and it provides some hilarious moments.

     Recently C and Daddy were playing baseball at the park. As C tried running around the bases, Daddy reminded him to touch home plate. He came around third, sprinted into home, stopped, bent over, and placed his hand on home. There’s no arguing with that logic; he did exactly what Daddy told him to do.

     The other night a mosquito bit C on the forehead, and he was very upset. In order to get him to stop screaming, I told him I’d draw a picture of that mean old mosquito. Underneath the mosquito, I wrote, “Mr. Mosquito, poop on him!” C studied the picture intensely, calming almost immediately. “But Mommy,” he said, “where’s the poop on him?”

     Who needs TV? We’ve got constant, live entertainment, right in our living room.

     Every once in awhile, I get caught up in this debate with myself about C and his diagnosis. He is certainly a far different child from the repetitive speaking, incredibly delayed, challenging child he was when he was diagnosed with high functioning autism years ago. But is he “recovered” and we just somehow missed it? This time my internal debate was started by an occupational therapist, who admitted her relatively high evaluation of his skills was likely due to the fact that she sees kids far more challenged than C is - while seeing no “typical” children ever. It was furthered later, by a  visit to a pediatrician we only see for acute care, and have only seen twice.

     C is a master at many things. He has changed from the absolute screaming nightmare upon walking into a doctor’s office (picture rolling around on the floor, trying to evade the doctor’s touch, and being restrained simply to look in his ears) a year ago. He has learned, through intense social story and prep work and a series of great, patient docs, that for the most part, it’s a battle he doesn’t need to pick. This new pediatrician we saw today (who has been fortunate not to witness such an event), commented on how well behaved he was. This was followed with a second strong push to put C on zoloft to “fix” his feeding problems. Does this man, lovely as he is, know anything about autism?

     It only takes one moment, one brief experience, to snap me back to reality and the knowledge that yes, C is on the autism spectrum; undoubtedly he’s firmly fixed on one end of the spectrum, but on it he is. Kids on the spectrum can be as different as night and day. I have yet to meet two children with the diagnosis who share more than a few similarities. That is, for those who look closely enough.

     As I was watching recess on the last day of school, I talked with two delightful women who work with C on occasion. While watching C play, I noticed things they did not. Yes, he is happy. He is often cluelessly happy. Yes, he is delightful and friendly. Yet I watched as the two boys he was playing with whispered behind his back about how to get away from him after they went down the slide. C missed it all, blessedly. Smile on his face, he appeared happy and engaged in play, yet everyone but the closest observer missed the fact that the other kids were plotting against him and he didn’t even notice. That is C’s autism; happily playing along, occasionally connecting with other kids, but mostly appearing to connect while he remains mostly oblivious. It’s just not obvious.

      Yesterday, at a public pool, I noticed a similar occurrence. Two little boys about the same age were teasing C while we floated on the lazy river. He took the whole thing as being an elaborate game of chase. He had no idea that the boys were making fun of him. I looked at him, while we participated in the charade, and wondered if I should take his childish sun hat off. Maybe THAT’s why they were making fun of him. Then it hit me. Taking his hat off wasn’t going to do anything; he just has autism. High functioning, sure. Perhaps even invisible to people like his new doctor, who probably thinks whomever diagnosed him was a quack (not the case). Yet I use those experiences to separate the really, really good professionals from the ones who clearly have more we can teach them, C and I.

     The day after hearing what the occupational therapist had to say was the day of the double temper tantrums in C’s ”very bad day” (see here). A dear friend, who has a son with autism, told me it was the world reminding me that yes, C is in fact autistic. “Don’t doubt that,” she said. “It’s a waste of your valuable time. Just move on from those people who aren’t able to recognize the challenges he faces, those that are masked by his personality. Just move on.”

Mommy, why do you think Ms. Mc wasn’t at science night? Maybe she had something else to do - maybe you guys wore her out at school today and she’s already asleep! Do you think she’s dreaming about the boys and girls in her class?  Maybe she’s dreaming about us losing our recess!!!

(From writing journal) The mailman is inpornant to send us and every budy mail.

I can’t find my smile….it’s nowhere to be seen. I will be wearing my sad face for a long, long time.

(From writing journal) Once a puon of time there was a Mom. She was a helpful person.

Can you inside this out for me?

(After stubbing his toe) My toe is clobbered.

Do girls’ breasts just pop out? Does it happen in just a minute?

MOMMY! THERE’S A SPIDER! CALL THE FIRE DEPARTMENT!!!!

(As I’m getting ready to go out to the pool in a bikini…) Mommy, why do you have THOSE breasts on today?

How many babies do you think I should get? Maybe 2 or 3. Or 7. I’ll have to make a big house with 7 rooms. Where will YOU sleep, C?  I’ll share a room with one of my babies. Unless he has the flu. Then I’ll take care of him.

     The National Spelling Bee was re-run tonight on ESPN. First, I think it’s really, really cool that the powers that be (no pun intended) of ESPN have chosen to air the spelling bee. Even cooler, however, is that C was captivated. Completely. It’s the first time I’ve seen him watch something with that much interest since he discovered Dora the Explorer. I think it might be the first time the three of us have watched something together we all enjoyed.

     What’s interesting to me, however, is that C’s spelling ability has diminished since starting school. He is still a good speller for his age, probably an excellent one, but he’s forgotten numerous words he used to spell without batting an eye. Cartographer, incredible, vacuum. I’m not sure if he’s forgotten how to spell the words or if he’s just forgotten the words themselves. Given that his favorite book used to be a toss up between the phone book and the dictionary, perhaps he’s just moved on to other things.

    Regardless, tonight’s interest has reminded me of my long ago search for a Spanish-English dictionary written for young people (back in the Dora days, when he was soaking up Spanish words like a sponge). Now he’d probably prefer a Chinese-English dictionary as his new favorite show Ni Hao, Kai-Lan (Hello, Kai-Lan) features a Dora-ish Chinese girl. Either way, since his new goal is to be the National Spelling Bee Champion, we’d better get cracking.

     C has always struggled with generalizing. His earliest feeding therapist said he needs to learn an apple is an apple wherever he goes - at our house, at school, at the park, at Grandma’s. It was a time when it was a challenge to get him to eat anything anywhere other than at home. I realized later the lesson translates to many other areas in his life as well, and we have seen evidence of that many times over.    

     I sometimes have moments where I think I can facilitate some great breakthrough with C in terms of connecting things in his brain for him. I think if I just say it correctly, in a way he understands, he’ll generalize the message and things will click. It usually involves an issue he can’t seem to get around or grasp, and I have this grand idea I’ll help give him an “A-HA” moment. The latest is sort of a hyped up “why” question, and I hope I’ll help him get some clarity about how he knows what he knows.

     So here I am, thinking I have a great lesson, something that will bring his subconscious knowledge to the forefront, combine with his conscious knowledge, and all potential academic issues will disappear. Yes, it’s true, this is the way we parents think sometimes. It’s not really conscious thought, but you learn to recognize that’s where your idle mind has gone. Before long I have him curing cancer and bringing peace to the world, which of course I am quite sure he could do. But I digress.

     Back to first grade. We’re working on spelling words, one of which is “read.” I ask C how he knows whether it’s r-e-a-d in a sentence or r-e-d if he only hears the sentence. I say, “There’s a pretty red flower.” Which word is it, and how does he know which word it is? He knows the answer, but he has no idea why he knows the answer. Or perhaps he simply can’t verbalize it. Regardless, we go round and round for many minutes with him answering that the “ea” is a short “ea,” that “red” is shorter so he knows it is “red,” etc. Next I say, “I read a really good book yesterday.” Similar responses. I finally give up and just explain how I know which word it was only by hearing the sentence and its content. He says “Ohhhh,” and I know I have failed to make the connection for him.

    Likely this will always be an issue for him. And I will likely continue to try to help him through it. While he may someday realize that an apple is the same wherever he goes, he may always struggle with generalization in some shape or form. I guess I need to take a lesson from what I’m trying to teach him and generalize more.

     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.

     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.