What We Need

     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.

     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.

     Wake up. Wait for C to wake up before showering because he will scream that he needs a bottom wipe (still working on that….) while right in the middle of shampooing and will have to dash across the house, dripping soap bubbles all along the tile…dog will lick those up but will probably throw them up later, and usually on the carpet which is harder to clean up than the soap bubbles on the tile. Listen to C get up (via baby monitor), turn off his white noise machine and get pull-ups off, undies on. Remind self to do some research on how to night potty train but also remind self there are bigger battles to fight at the moment. Listen to him go into his bathroom and run to his room to attempt to figure out how, when he pees, it gets all over the floor, the back bottom of the toilet, and the wall. Miss out on that one. Must remain one of the great mysteries of the universe.

     Take shower, interrupted by C standing outside shower door, talking, but not talking loud enough so I can hear, and after repeated attempts at understanding what he’s saying, watch him follow dog out into the hall and wonder what he’s going to do to said dog, and hope husband is paying enough attention to save dog should necessity arise.

     Plod into kitchen, ask husband if he gave C reflux medicine (99 times out of 100 the answer is yes, but must ask in case today is that ONE day), start fixing breakfast. Listen to repeated requests for “dip” (favorite breakfast of dipping something, usually gluten free pretzels, into natural peanut butter and organic whole fruit jelly without any apples because C is allergic to apples), and decide to make his day start great and give dip. Listen to newly acquired request to “spread” peanut butter out on the plate “like Daddy does,” and wonder if this is the start of some new sensory based problem rearing its ugly head.

     Start making lunch, which includes tearing up gluten free deli meat chicken (must be chicken because C is allergic to turkey) into perfectly sized small pieces, knowing if it’s not perfect, I will hear about it the whole way home from school and will be reminded of the one day I didn’t do it perfectly for the remainder of the school year. Put assorted other odd finger foods he will eat at school  (which is a shorter list than the foods he will eat at home) into lunch and wonder, if anyone at school wonders why I send the same thing for his lunch every day, and resolve to increase attempts to work on feeding issues in the hopes he will learn an “apple is the same thing at home, school, grandma’s house, the park,” BUT OOPS, he can’t have apples, work on another analogy.

     Finish packing lunch and set out clothes and revel in the fact that after years of work, C is finally able to unbutton own pajamas and can mostly dress himself as long as things are laid out in right direction and he doesn’t have to button, tie, zip, or snap anything. Make mental note to ask school team to work with him on those things in the hopes that someday, between the team at home and the team at school, he will be able to wear something besides elastic-waisted pants. Wonder when elastic pants become sans-a-belt pants and do kids make fun???

     Get water bottle filled and be glad it only took two weeks to figure out the bubbles that come home at the end of the day are NOT in fact from some leftover soap contaminating his water bottle, but rather because he messes with the straw in the bottle, blows water back INTO bottle, making, in effect, spit bubbles. Listen to C remind me again that there’s soap in his bottle (BLAST self for ever suggesting that within his ear shot!), and remind HIM again that the bubbles are from his spitting back into it and please don’t do that.

     Pack up backpack - have him pack himself reminding him of the backpacking rules that come so naturally to most people. Wonder if I ever had to LEARN how to pack a backpack or did I just figure it out inherently??? Teach him (again) to put homework folder in first, followed by lunchbox, sweatshirt and water bottle on the side. 

    Run out door and get into car. Buckle into 5-point carseat and wonder when  C will get enough muscle tone combined with weight where it’s safe to put him in booster seat. Wonder when more kids than just the one boy - who says something EVERY time he’s in our car - will notice that C is still in a “baby” seat. Sing stupid songs, pretend to race, do whatever it takes to get to school happily and distract from inherent distress at going anywhere Mommy is not. Join in lively rendition of favorite song, “She’s a Brick House,” (complete with “womp-bomp-a-loo-wow” sound effects) and renew concerns about the implications of a 7 year old knowing that song. Start singing “She’s a Maniac” (coupled with pretend fast driving) and doctor up the words to talk about Mommy driving like a maniac and wonder when THAT will come back to haunt me and in what way. Ask what special he has today and if he thinks they’ll have rocket math and keep up constant chatter entire way to school while looking in the rear-view mirror watching for tears or signs of distress.

     Get to school, park (because we don’t do the “push-out” lane), and walk onto playground, generally timing it right before bell rings so there won’t be too much time to run around and generate reflux issues before school even starts. Watch C run around for 2 minutes and not connect with anyone and fight urge to snatch him up and run back to car and keep him at home, sheltering him from sure pain of growing up. Watch him keep one anal ear out for horn so he can not only get in line, but cover ears because horn is too loud and resolve to ask if they could substitute something that doesn’t cause all the spectrum kids to go into sensory orbit before they’re even in the building. Know he is so worried about when the horn will blow that even if he had more time, he wouldn’t venture more than 10 feet away from his class gathering spot and feel sad that he’s so worried at an early age. Wish I could worry for him, and realize, oh wait, I already do that, but wish he didn’t do that.

     Wait for bell to ring, receive more kisses and hugs, be thankful that some days he walks off to get in line without even a backward look at me. Be happy that days of crying and begging to go home are mostly over. Wait for class to line up and go inside, standing, waving goodbye, before walking out with handful of other parents who still walk their kids inside the playground. Wonder, as we walk past the teacher/aide who is waiting for us to leave so she can lock the gate, if she thinks we’re nuts or just diligent parents.

Go home, work, clean, write.

Worry that phone will ring and it will be school.

     The first time C ever got in trouble at school was during his last year of preschool. When I went to pick him up, his teacher - a delightful woman with an enchanting voice every preschool teacher should have - was aquiver with excitement. “We’ve been waiting for this!!” she exclaimed. “It’s so typical!” For the uninitiated, “typical” is the word that has replaced “normal” in the world of development and special education. “Typical” is something they strive for, at least in certain areas.

     For Miss P, it was a moment that surpassed nearly all others in C’s achievements during his years with her. For him to get into trouble meant he was comfortable enough to let go, he was relaxed enough in his environment to just be a kid. I have no recollection of what he did to land in hot water, but I do remember how excited we all were.

     Now, when C tells me he was “counted on,” I admit to experiencing a secret thrill. They use the “1-2-3 Magic” method at his current school, and he rarely gets past a 1. In my mind, when he reports being counted, it means he was just being a kid, a regular kid at that, and was probably participating in mischief with another child. All good things for C, in my book.

     As my boy wandered around on the playground this morning, somewhat idly, he had a grin on his face. Anyone looking at him would think he was happy. But I, as a somewhat skilled interpreter of his language, saw a different picture. He watched the boys and some girls playing basketball, probably knowing the game was too fast for him. He said “hi” to a couple of kids in his class, but didn’t connect with anyone in particular. He was grinning in that slightly uncomfortable way one grins when they don’t know what else to do with themselves. He went up and down the slide a few times, enjoying it, but I’m sure knowing it would’ve been far more fun if he could share the experience with someone else. And I just wanted to cry. I still want to cry. I do cry.

     I know some people think I worry too much about this child who appears so happy and well-adjusted. Most of our days at home pass with relative calm; we’ve become so used to the way our family functions that we don’t notice how “different” we are. C doesn’t struggle in an obvious way at school, and to all who see him, he seems like he’s doing really well. He is in fact doing really well, and he likes his school. 

     Yet there’s more to the picture; there were tears last night. Big, fat, alligator tears about a hole in his sock that were probably about more than the hole in his sock. There’s crying every Sunday night about not wanting the weekend to be over, which probably has as much to do with Daddy going back to work as it does with C going back to school. There’s constant distress over why a certain friend, his “best” friend, doesn’t ever invite him over when we’ve had that friend over numerous times. He so desperately wants to have friends, lots of friends. He does have a number of surface friendships, but nothing outside of school would happen if I didn’t initiate it. No one is running home begging to do something with C. He is painfully aware of this fact, and doesn’t understand why.

     I so worry about this sweet, sensitive child who seems to mask his worries and stress. I want his path to be easier, and not because I want to shelter him from learning tough lessons, but because I worry he will be so terribly damaged on his journey. I see tiny, subtle little clues that he is struggling far more than any of us realize, and I wonder what that means for him down the road. 

     I realized this morning, as I did my morning errands and chores after dropping him at school, that I want things to be different for him. I want a cure. But not for him. For the rest of the world.

     C attended two different kindergartens, because the first one we tried was so terrible. There was a little girl in his class who had Wilson’s Syndrome, which is an autism-like genetic illness that has at its base a high copper content in the body. I went in for lunch a number of times and sat with the kindergartners outside. Several of the kids were making fun of this little girl behind her back and saying very sophisticated and horrible things about her. Frankly, I wasn’t exactly sure what I was supposed to do or say given it was a Montessori school whose main tenet seemed to be that adults weren’t supposed to get involved in much of anything.

     I later brought up the incident with the principal, while attempting to explain to him my concern about C’s future and his complete lack of friends in his class. Mr. M’s response was that this little girl often hit other kids and that explained why the kids didn’t like her and therefore made fun of her. It seemed completely okay with him that she was the brunt of vicious comments. This wasn’t my first clue that Mr. M was not the kind of person I held much respect for, but it was one of the most telling. It broke my heart that his answer to the problem was to blame the little girl instead of working with her aide to make sure the incidents lessened as well as perhaps helping the other children understand why she often lashed out.

     The most damning moment for Mr. M, however, was the day after a particularly unpleasant IEP meeting. My emotions were raw as were my eyes from crying, and as I tried to get out of the school after dropping C off with a minimum of interaction with anyone, Mr. M called me into his office. As he was yelling at me, with door open, teachers, parents and students wandering in and out, he made a comment I will never forget. “I don’t care if C has any friends,” he screamed. “That is not my problem!”

     This, from an elementary school principal. I understand it’s not in a principal’s job description to help children have friends, but that comment brought on a light bulb moment for me. We pulled C from that school right in the middle of the year and never looked back.

     Once a month at C’s school, they have Friendly Friday, where family members can come and read to kids in their child’s class for 30 minutes. The kids love it, and it’s probably a nice change of pace for them. They really seem to enjoy having the family members come in to read to them. I try to go as often as possible, and spend a fair amount of time picking out books that I hope the kids haven’t read before. Today I took books with serious morals in their stories (such as The Thirsty Moose - a Native American story about a big moose who drinks all the water in the river, and the little fly who gets in his ear and drives him crazy, causing the moose to leave the river), hoping to impart some wisdom to the kids, however subliminal.

     Yet I’m pretty sure there’s a conspiracy going on. Sure, the school tells us “it’s for the kids,” “reading to kids 30 minutes a day ensures their love for books,” and other such propaganda. I bought into that completely, and patted myself on the back for doing my civic service. But I realized today as I walked out of the school, big, stupid grin on my face, that it’s not for the kids at all. It’s for us, the parents who arrange an hour off work to go into their child’s classroom, the grandparents who nervously walk down the hall not sure exactly where to go, the stay at home Moms who are forced out of sweatpants and into the world. I’m quite sure I got much more out of it than the bright-eyed kids who sat in a half-circle around me and listened to me read to them.

     I’ve seen autism do many things to many families, and more specifically, to many mothers. I’ve been struck by two types of mothers I’ve seen, and I can see how it can go either way.

     First, the Mom who has such a grasp on her own kids and how they function. She recognizes the difference between autism behavior and kid behavior. She has the delightful ability to advocate for her children without being confrontational, and I envy her that skill. While killing the school staff with kindness, she manages to get what her kids need into their IEPs (Individual Education Plan) and probably makes the IEP team members think it was all their idea in the first place. She is calm, cool, collected, and I want to be around her in the hopes some of it will rub off.

     The second Mom, (sadly, I’ve seen many more of these), breaks my heart. She is beaten down, either by difficulties with her child, frustrations with the school system or the inability to find any doctor who can help. Recently at a meeting for parents with special needs children, she spoke her piece, shaking with anger and rage, and stormed out of the room. I didn’t know whether to be relieved or to cry, and frankly, it made me feel horribly lucky and terribly sad for her at the same time.

     I can see how it could go either way for many parents. We struggle so to help our children, to make sure they are getting what they need in life and school. Nothing is what we thought it would be, but we of course adore our children. We try to maintain a balance between the time we want to spend with them just playing with no agenda and the time we need to spend with them teaching them important life skills. We stay up late researching, sorting through medical bills, trying to read lab reports, and all the while trying to make sure we are taking care of everything else in our lives.

     But I know which Mom I want to be.

     C is the friendliest child in the world. He cares about everyone and everything. He talks to babies, kids, adults, elderly people, animals, planes, trains, cars, flowers, trees and bikes. Still, however, he is the friendliest kid without any friends you could ever meet. He is “friendly” with many children at school, but he doesn’t have any close friends. No one is running home from school begging to have him over. If I don’t initiate the contact with a parent and invite a child to play, he would never see anyone, because no one ever invites him over. It’s heartbreaking.

     That’s part of why we moved close to my family, because we figured if Ga and Pa were two of his best friends, so be it. His friends will probably always come in unusual forms.

     A case in point is a program they have at his school. Mentors come in and volunteer their time once a week to hang out with a child. Generally they are children that are struggling in some way, and while I know C’s mentor, “Mrs. T,” probably wonders what she can possibly teach him in terms of academics, she gives him the world in his having his own special friend at school who is only there for him. It is the highlight of his week…well, maybe next to gym class.