What We Need

     For those who missed last week, I’m doing a weekend link to some of my favorite autism-related posts. This week, I’m linking to AWalkabout’s blog, a place I’m sure once you visit, you’ll be enticed to stay awhile. 

     One of my earliest blogging friends is a delightful woman whose adventures in life and in autism amaze me. She balances it all with a grace most of us can only envy, on our best days. I always look forward to her posts, but for me, this one captures the essence of the challenges and struggles we often face in the midst of wonderful little moments of success.

     This is one of those times when I wish I could do away with the need for privacy, and just tell you C’s name. It’s a really cool name, a very different one, one that nearly everyone that hears it has never heard it before and will likely never hear it again. It’s a word that has to do with birds of prey. Husband and I picked it because we were looking for a name that had something to do with the outside world, the environment, nature. The name just fit.

     Less then 2 days after C was born, the ventilator he was on caused him to blow a hole in one lung, and a nurse rushed into our room asking permission to perform surgery to put in a chest tube. She was in a panic, and without batting an eye or even asking a question, we agreed. She ran out of the room, and we sat, numb with grief. There were so many tense moments, moments where I look back on them and wonder if I really realized how close he was to death, and I’m thankful I didn’t fully realize.

     The next day, when C wasn’t improving, the docs told us they wanted to evacuate him to a hospital where they could handle his issues better. The evacuation would involve a 30 minute ambulance ride to a rural airport, then a flight over the Rocky Mountains in a lear jet/air ambulance, followed by either another ambulance ride or a helicopter flight to the hospital in Denver. I remember looking out the window; we lived in a remote Colorado ski town, and I wondered how they could possibly make the trip safely because we were in the middle of a heck of a snowstorm.

     While we waited for the weather to clear enough for the plane to make it through, the nurse sent Husband home at 2 a.m. to pack his bags. He would go on the plane with C, and I would follow in a couple of days when I could once again move (I didn’t exactly hop out of bed after the c-section - I’m not sure I hopped anywhere for the next year). As Husband drove home, on a dark, snowy, isolated dirt road, he spotted a bird of prey flying in front of his car for a few moments before it took off toward the river. He took it as a good sign, a sign that C would survive all he had yet to go through. What’s in a name, you ask? Everything.

     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.

     I usually don’t post on the weekends, but for you diehards out there, I thought I’d start posting some links to my favorite posts by my favorite bloggers. They all have to do with my topic of choice: autism.

     The first link is this recent post by Last Crazy Horn at Odd One Out (here). LCH is a young adult Aspie (Asperger’s), and she is in graduate school becoming a music therapist. Music therapy has been a delightful therapy for C, and encompassed far more therapeutic disciplines (occupational, physical, speech, etc.) than I ever anticipated.

     This post made my heart ache.

     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 said tonight. He’s right, he did. Starting with the 2:30 a.m. wake-up with many, many tears, a night of restless sleep became a restless day. A somewhat happy kid deteriorated into the equivalent of a two year old. We never experienced the terrible twos at our house; we naively thought we escaped them until 4 came along. Then we paid our dues for a good long while. In spades.

     Temper tantrums were finally mostly a thing of the past - until the last few months, when they started to rear their ugly head once again. Fortunately, they haven’t changed too much since age 4, so we’ve slowly gotten better at handling them. Not handling them, really, but rather just getting through them somewhat emotionally intact. I’m talking about Mommy and Daddy getting through them, not C. C is still left completely drained, teary, and wanting to snuggle. Surprisingly, today he still had the energy for a second one a few hours later, which quite frankly amazed me.

     I hate these tantrums with a passion. Sure he was tired, cranky and frazzled today. But he threw both these tantrums with one of his therapists, which is unheard of. He never shows that side of himself to anyone but people he knows better than well - family only, and not even all family. I consider it a good thing he feels comfortable enough with Miss L to lose it in front of her, but in truth it astounded me. Worried me. I know whatever it is that’s bothering him is pretty bad when he lets it all hang out with someone he’s always trying to impress. 

     I know there’s a trigger somewhere, and I also know I’ll probably never know what that trigger is. Whatever it is, it’s something ongoing, as they are occurring more frequently lately. My Mom reminded me today that we have a toddler in the house, but interestingly she wasn’t talking about the tantrums. Yet she’s correct in many ways, and while I struggle with the knowledge that he is mostly capable of controlling himself, I know there are times he simply can’t. And while part of me wants to admonish him for his behavior - he is, after all, smart enough to know that 7 year olds don’t act this way - most of me knows the behavior itself is punishment enough.

     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.

     C’s relationship with food is one I can describe with one word: weird. He’s not weird, but he thinks food is weird. Eating has been (and continues to be), without doubt, the biggest struggle he’s had. And it’s been the most challenging one for me as a parent. I remember details surrounding events relating to his relationship with food in vivid clarity, just like he remembers exactly what he ate to get which GeoTrax train part.

     First was the “cheerio incident,” and another was the comment his first feeding therapist stated about kids like C dying in other parts of the world, both described here. But the most confusing, the most powerful, the most educational, and the most life-changing remains a simple phone call. C’s feeding therapist had insisted we get food allergy testing. We had the blood drawn and I felt quite smug that nothing would show up; C ate graham crackers, yogurt and drank cow’s milk with abandon, and in fact those were often the only things he would eat.

     Then came the phone call from the nurse in our small-town doctor’s office. “He’s allergic to wheat, milk, and eggs,” she said a little too cheerfully. I watched him, slurping milk out of his sippy cup, and literally sank to the floor in tears. “What’s he going to EAT?” I cried, sobbing, wondering if finally, my child really would starve himself to death. Still not understanding the severity of C’s feeding issues, the nurse said, “Well, you’ll just have to take him off those foods and substitute other ones. No big deal.”

     She actually said, “No big deal.”  Really. Honestly, other than the trauma surrounding his birth, I couldn’t imagine much more of a big deal for this particular child. This was (and is) a child who could tell if we switch brands of baby food jars. Currently, he can tell the difference between different colored kernels of corn. This was nothing short of a nightmare, and I had no idea what to do next.

     In my usual fashion, I dove into research and discovered that people were already recommending gluten (wheat, barley, oats, rye) free, casein (milk protein) free diets for speech delayed children. Even though autism wasn’t even on our radar screen at the time, it is a common first intervention for children with that diagnosis, and one that brings great success for some. So off we went, I took out milk first by adding a mere teaspoon of rice milk to his milk and worked up from there. Two weeks later his eczema was cleared up and some unmentionable bodily functions had improved.

     Yet how and what C eats has changed everything about what a “normal” family does. Thanksgiving is irrelevant to him. Restaurants are places that hold absolutely no interest. My mother wishes she could take him to the ice cream shop for a treat. And in an attempt to look on the bright side of things, I have been slightly thankful that C is not interested in ice cream whatsoever, because it makes him not being able to have it far easier. He doesn’t want cake, candy, or other such things. He’s probably the only child in the world who has never tasted chocolate, pizza, or spaghetti sauce. He only enjoys Halloween because he gets to knock on people’s doors and chat with them; he gives all his candy to Mom and Dad (after, of course, sorting it by brand and color).      

     Years later, C is still GF/CF. Now I am too, due to my own recently discovered celiac disease and an allergy to milk protein. It’s been harder on me because I enjoy food so much more than C. Yet even though C’s feeding struggles are still enormous - to the point where I have come to accept the fact that he will likely always struggle with food - his health (and my own) is so vastly improved over those early days it’s hard to imagine ever going back to that kind of eating again.