Archive for November, 2008
I write a lot about C’s eating challenges, and it’s partly because it is one of the biggest struggles we face, but it’s also the most unusual to people who know nothing about it. It’s the kind of thing you never think about unless it’s a problem. And if it’s a problem, then it’s usually an overwhelming problem. People don’t understand why we can’t take C to a restaurant, and I usually let them think it’s his dietary restrictions that keep us away. But that we could work around. It’s the more incomprehensible issues that make restaurants problematic. For a child who can tell the difference between brands of peanut butter, won’t eat a raspberry if it’s unusually large, and eats mostly only single ingredient foods, restaurants are pretty much inaccessible. C will eat one particular brand of deli meat chicken, but putting it on bread for a sandwich makes it an entirely new food, one that requires much effort to add it to the list of things C will eat. And putting it together with avocado or tomatoes, some of his new “preferred” foods, is even more forbidden.
You can therefore imagine my surprise when he requested a burrito for dinner tonight. Husband and I throw all kinds of things on tortillas, so it’s familiar to C, but his actually eating a burrito is something I didn’t expect for years to come. He won’t eat salsa (too many ingredients and a combination texture that is distasteful to him), and mixing beans and rice would certainly be taboo. Hesitantly, I asked him what he’d like on his burrito, expecting him to give me a single ingredient. “Guacamole (his word for avocado), tomatoes, rice, beans, salt and pepper.”
Hiding my surprise, I quickly whipped up a little burrito, with his supervision, and took it to the table. He remained standing, which is his latest comfort spot when faced with a new food. I always envision his body activating the fight or flight response and him sprinting off somewhere safe, but I promised him he would be okay, and down he sat. Teaching him how to hold a burrito is another exercise completely, so instead I held it with him and off he went. It fell apart on the plate, something I had to warn him about in advance (messed up food is generally unacceptable), but he kept at it anyway until the entire thing was gone.
These are the things we celebrate around here. I doubt that C’s eating something new will ever be something we take for granted, although it is becoming slightly less dumbfounding when it happens as of late. Yet it is always cause for patting ourselves (and C) on the back. All those years of working patiently in feeding therapy might have paid off after all. He’s come a long way from barely being able to tolerate a new food even being on the table, to moving it closer to him, to it being on his plate, to touching it, to kissing it, to licking it, to finally taking that first bite. A process that has finally come down to this. A burrito. But not just a burrito; a cacophony of tastes, textures, colors, smells, and sights that has been thrown together and all mixed up. Just the way life is supposed to be.
On a random piece of paper that came home from school, C wrote, “I’m thankful for my Geotrax and my teacher and my family.” I don’t know if it was an assignment or just something he thought about and wanted to write down, but on this eve of Thanksgiving, I’m looking at this piece of paper and being thankful C can write, express himself, experience love, enjoy school, be happy, play, and make his Mama cry.
C has some pretty cool people in his life. His dearest friend in our last town was Bill, the Jack Russell terrier down the street, so I consider it a big step that people have now made it on his list. On this eve of ”Grandperson’s Day” at his school, I would be remiss not to mention his friend Julie. His combination play ABA (so gentle and fun he doesn’t even know he’s doing any work – except perhaps when he’s putting away his laundry with her guidance) and respite provider, she’s been with us now for a year. There’s no words to say how lucky we are to have her; C practically pushes us out the door when she arrives and resents it greatly if she and I try to talk. Julie even ranks above Ga and Pa on the list these days, which is no small feat. I’m not sure how she compares with Uncle T and Aunt J - it could get ugly if we tried to flush that one out.
So tomorrow Julie will be C’s date for classroom bingo and Thanksgiving lunch. Most kids will probably bring their grandparents, and I consider it lucky that Ga and Pa are conveniently out of town, because that could’ve gotten ugly too. He practiced in speech group today so he would be all prepared to introduce her to his class. C is still wavering between calling her his “babysitter” or his “special friend,” but truly, neither word covers the love he has for her.
You probably don’t remember me, but I remember you. You see, I used to be just like you, although I never would’ve been as vocal about it. I was one of those people in the grocery store who couldn’t stand the sound of a screaming child. I still can’t stand it, but not for the same reasons: now I wonder if the child is overly sensitive to sound and light, or if they have been stretched past their point of self-control. I don’t always assume kids are “typical” anymore because sometimes it’s so hard to tell. How I wish you knew this fact.
You see, this wasn’t our first visit to the train park. My son loves that place more than just about anywhere else on earth, and we’ve worked very hard to make visiting there pleasant for all of us. We’ve been going for years, but going with a friend is something he’s never experienced. I took him and his one friend, the first real friend he’s ever had, there after school. I’m not sure I’ve ever seen him as excited as he was that day, hands flapping as I picked them up, jumping up and down as we waited in line for the train.
Perhaps it was my mistake, but after years of his begging, I finally agreed to let him ride in the enclosed kids’ caboose in the back. I’ve never let him go on the caboose because I wasn’t sure how he’d handle it. What if it terrified him? There’s nothing that can be done until the train ride is over, and I can’t be in there with him to help him. But this time, with his special friend, I thought perhaps it was time.
Sure enough, he screamed the entire time – but happily. Stopping only to breathe, he continued his high-pitched, excited screaming for pretty much the whole ride around the park. In the car in front of the caboose, just far enough away that he couldn’t hear me, I didn’t know whether to laugh or cry. He was clearly so thrilled to be in that caboose he couldn’t even contain himself. Yet at the same time, I suspected some of the other kids didn’t like it, despite some of their eager participation in the screaming themselves.
When the train stopped, I waited outside the caboose, speech prepared to remind him that when other people make loud, unexpected noises it scares him, and how he needs to remember there are other people around. Of course he let out one last little screech, which prompted you to scream yourself, so angrily, “Oh, STOP that SCREAMING already!” Everyone standing there snapped their heads up at your tone, except my C, who was oblivious. Fortunately, you weren’t even on the train yourself (your granddaughter being able to go alone), so you didn’t witness the entire trip. Although I’m sure your granddaughter filled you in on the highlights.
I had the chat with my C, after which he was appropriately chagrined. I saw you take your granddaughter over to the carousel, and I thought about approaching you to explain. I wanted so desperately to educate you about what we’ve gone through to get where we are. I wavered, not wanting to seem like a parent who makes excuses for their child, but also not wanting you to get away with feeling so self-righteous about this supposedly horribly behaved child of mine. I was so angry at you and people like you I wanted to strike a figurative blow for all of us parents out there who work so hard to even take our kids anywhere. We try so hard to protect your sensibilities, but frankly, I’m a little fed up at this point with worrying about people like you.
So I find myself thinking it’s a good thing you are blessed with the lovely, quiet, seemingly well-behaved little granddaughter you seem to have, because I suspect if there were any hints of issues, you wouldn’t be able to handle it. It would probably surprise you to know how lucky and blessed I think I am. Wherever you are, oh grandmother, I hope you know how lucky and blessed you are.
On the heels of the wildly successful Ten Things Every Child With Autism Wishes You Knew, by Ellen Notbohm, I thought I’d try This Mommy’s version. I can’t speak for all Mommies who have kids with autism, because we all have different challenges. But here’s my ten things I wish you knew:
1.) I do not wish I could trade my child for anyone else’s, nor do I long for him to be “normal.” “Normal” is a bad word in our house. Normal is boring. I would trade the pain and struggles that autism causes C, but I wouldn’t trade his personality for anything.
2.) C does care if he has friends. It may not seem obvious, but he desperately wants to connect with other kids. When I hear someone say, “Well, it’s okay because kids with autism don’t care if they have friends, right?” I want to scream.
3.) C is not a picky eater. He is not the same as a child who is finicky about foods. C is terrified of food. Phobic, in fact. There is a difference. Letting him go hungry will not, in fact, get him to eat. He will starve himself to death before eating that slice of pizza we all crave if that’s his only choice.
4.) Most of the time C is alone, and it breaks his heart (and mine) that no one invites him anywhere.
5.) I’m often the only mother at the playground actually paying attention to what kids are doing. I’m up on the equipment, facilitating interactions and protecting C from other kids as well as protecting other kids from C’s enthusiasm. It annoys the heck out of me to watch parents on the phone, chatting away, oblivious that their child might be acting horribly. It’s such a prime opportunity for learning appropriate behaviors, for children with social challenges as well as those that might need a little help learning how to be nice.
6.) Just because C is smiling does not mean everything is okay in his world. His stresses come out in different ways that aren’t immediately obvious. There are only a few choice people he will tell about sad moments in his life, and he hides those things from everyone else as best he can. Don’t be fooled by that happy face.
7.) Just because C can do something or behave in a particular way one day does not necessarily mean he can do it the next. Expect great things, but don’t expect things to always be the same.
8.) Autism can be extremely isolating for kids and their families. I want for people to be gentle with us. We need friends – kind ones who care enough to try to understand how challenging our lives can be.
9.) When I tell people C has autism, I’m not going for sympathy, for him or for myself. I just want people to understand that there’s a reason he does some of the things that he does, and I want to educate people about autism.
10.) I am tired. I am exhausted. And sometimes, it feels as though every decision is fraught with worry and double-edged swords. Is taking C to occupational therapy sending him the message that something is wrong with him that needs to be fixed? If I stop taking him to OT so that he’ll have more time to just be a kid, am I failing him? By telling him other kids will think it’s gross if he picks his nose and eats it, does his brain think I’m telling him that he is a freak? If I don’t sign him up for that social group because I have decided there are just some skills that can’t be taught, does that mean I’ve given up? And worst of all, am I doing anything, anything, that tells him I don’t love him just the way he is?
“Mommy, I love ya’ from here all the way to the Highway 70 in Utah.”
“Hurry up and give me a snuggle! My brain is dissolving!!!”
(From class writing work) I wish I were better at…tennis because it is fun. Next week I might hit the teacher again.
“Someone forted at school today. Oh, yeah, it was ME. And it was FUNNY. And it’s spelled f-o-r-t with an e-d at the end of it.” (It took me several moments to figure out he’s finally learned the real word for what we call “tooting.” But leave it to him to put his own spin on it…)
“Mommy, I do NOT know ANY cow language at ALL.”
When you have a child, it’s as though someone has held up a mirror in front of your very soul. With a special needs child, the mirror just happens to be the magnifying kind. All the inadequacies you could hide before becoming a mother come out of their respective corners fighting for control – not in your child, but in yourself. Every fault you have is exaggerated and multiplied, and you find yourself wondering why your child has to pay the price for your own personal demons. You do things, wondering how many years of therapy it’s going to cost your child down the road, but not being able to figure out another way. You simply are who you are, much like your child is who he is. Yet there is a flip side, thankfully. All the benevolent qualities you possess seem to come out as well. The gifts you give to your child are the very best parts of what you have, and they are given with abandon. It’s not that your child has a piece of your heart, but rather a piece of your very self.
Oh, french fry, dear, beloved french fry. I remember Mommy buying you, not once, but a million times. I remember the drive from the “M” to Ga’s house, and how Mommy and Ga would look at me in the rear-view mirror, waiting for me to take the plunge. I held the bag many times, but never looked inside. Then one day I remember touching one of you, and finally holding one of you in each fist. I then opened my mouth as wide as I could so you wouldn’t touch any part of me as I brought you toward my face once, twice, again and again. It was a few zillion more stops at the M before I could touch you with my tongue. Oh, salty slice of potato, once I started I couldn’t stop. I licked but wouldn’t bite, and by the time we got to Ga’s house, you were wilted in my hands. One day, I decided to take the plunge. I bit you. I ate the whole salty stick. But just one. And then I wouldn’t touch you again for months. Then I did again, by the zillions. I wanted you every day, and now we’re the best of friends.
Oh, beloved french fry, how do I love thee? Let me count the ways.
I often marvel at the timing of things in my life as C’s parent. People compliment me on the positive spin I put on autism, and I am often reluctant to express great sadness or frustration. Yet lately, sadness and frustration have been our norm. It’s as though we’re living a lie. To all looking in from the outside, everything probably looks great, but at home we’re falling apart. So near tears am I at so many points of the day I find myself grateful for a respite in both my own work and C’s school.
C’s behavior the last couple of months has been horrendous. He’s Jekyll and Hyde from home to anywhere but home. Fits, tantrums, defiance, and completely uncontrollable behavior have taken me to the end of my rope and convinced me that I am quite possibly the worst parent ever to roam the Earth. I’ve always said I could understand how the divorce rate for parents with children with autism is so much higher than the national average, but I never really got it until now. It’s not that we differ in our opinions on what to do for/with/about C, but rather, by the time we’re done dealing with him, we have no energy left to give to our relationship. I’m thankful, through these difficult periods, that we are so fully committed to our marriage and to C. It probably allows for a certain amount of taking each other for granted, but I don’t think either one of us is up for tending to each other’s needs at the moment.
Yet just when I don’t think there is any light to be found in this tunnel, something happens to remind me it’s not completely dark here in my life as C’s parent. As I watched him tonight, miraclulously shoveling fistfulls of salmon and rice (two foods he’s never had) into his mouth, not gagging or covering his ears with his hands (shaking them instead, but we’ll take that), I was given a bit of happiness to temper everything else that’s been going on lately. I was reminded that I do enjoy being a mother while he read me a book, his voice full of inflection, clarity and excitement. His behavior made me revel in the entertainment of dealing with “sometimes almost typical” instead of “creature from the wicked planet.” Even if tomorrow is back to terrible, I will have at least had this brief moment of joy that will help me get through to the next moment of joy. And it is for that I am thankful this night.
Dear Mr. Obama:
I hope you get elected for president. Guess what? I voted for you! Isn’t that cool? I am in 203 this year. I know the Preamble to The Constitution. My teacher’s name is Mrs. B and I am in 2nd grade this year. It’s nice to meet you. My full name is C__M__P__. My address is ______Drive. My zip code is 8____.
This is C’s letter written to President-elect Obama the night before he was elected. Off it went in the mail today to Senator Obama’s Chicago office. C is hoping for an invite to the Inauguration. Ahhhh, youth. It warms one’s heart.