Autism Watch: 2007

Archive for August 2008

I think I mentioned earlier this week that I was worried about another year of fighting to get ds to go to school…to get up and leave the house on time, fully dressed (which means shoes)…and listening to him each night as he shares stories of how he is wronged at school or what frustrates him or who takes up too much of his desk space or who is a ‘brat.’ (And ‘brat’ is someone that continually upsets him in a way that appears intentional — he’s actually pretty discriminate about who gets that label.)

So if I didn’t mention it earlier this week, I am now.

This morning was the worst yet…out of three whole days, it’s not a major contest yet. Day one he was excited, day two he was hesitant because he was sure I hadn’t signed all the required paperwork, and day three…it seemed to go so well when I woke him up at 7:30. He slept through his alarm (he was up later last night because it was his behavioral therapy program night) and he didn’t want to get up initially until he remembered that he was hungry and wanted pancakes. And I was so proud, I’d already prepared them, leaving me to just lead him to the kitchen since he normally wakes up and hops out of bed almost immediately. Fast forward to the kitchen a minute later, and he’s mad. I’d made the ultimate mistake in the world of pancakes. I’d…wait for it….poured the maple syrup on them before he sat at the table. This wasn’t the first time, yet somehow this really aggravated him.

I did get him out the door on time, but he refused any sort of food, even a completely new stack of homemade pancakes. (For you new blog-readers, I make almost all of his food from scratch, including the pancakes he eats daily for breakfast, day in, day out.) He did brush his teeth, but only with a lot of slamming and banging of the toothbrush and toothpaste container. If he could have slammed the faucet on/off, he would have. He stomped onto the stool. Shut the door loudly. (You can’t really slam that particular bathroom door, which is a blessed thing.) “There! Happy now?” Stomp stomp stomp to his shoes, shoves his feet in them even though he’d told me earlier he wasn’t going to wear socks or shoes. (“I don’t care if people stare!”) Time to get in the car. “You know what? I’m going to get suspended. You hear me? Then I won’t have to go anymore.” Sigh. SIGH.

At school, we found the classroom door open, and I had a chance to speak with the teacher. I like her. She’s got a big smile and seems to already have picked up on some of ds’s nuances. We talked for a minute, she assured him that I had signed the paperwork, and gave him some tips to handle the teasing he’d experienced on Tuesday. You could see him visibly relax when he realized he didn’t have to worry about the paperwork, and that someone knew about the teasing. And the aide? She’s on it, too, and she’s going to be sure things on the playground go well.

How’d pick-up go? It went great. We chose a different gate, on the teacher’s suggestion, as the other gate is less crowded. He didn’t have to wade through so many people, and he didn’t mind the walk to the car either, though going against traffic with a rolling backpack that drags behind you a bit posed a bit of a challenge because so many were in one-way traffic mode.

But, once home from school, the meltdowns are already worse. He’s been angrily, violently mad quite a bit in the last few days, and it requires so much calm on everyone else’s part to keep him from exploding…though we’re still working equally hard on ensuring he doesn’t get his way every time and that the rest of the house isn’t jumping to give into him, especially if his demands are unrealistic. So we’re wondering — is it from being back in school? The stress of behaving all day so he lets loose at night? It’s too early to tell, but I suspect it’s a combination of that and no regular routine. And to make matters worse (at least for him) is that it’s Nascar week here in town. The festivities begin this evening (though we did drag him around a bit last night to see the haulers parked in various places and to his favorite restaurant after, despite him whining the whole drive about how he’s carsick and it’s not fair that he’s stuck in a car for something we want to do, not him) and don’t end until the fireworks after the race late Sunday night. Thank God, we’ve got respite help during all of this, but I think Monday, the holiday, could be crazy. Two weekends like this a year, and maybe it’s selfish, but we look forward to them all the rest of the year. I do wish ds would find a way to deal even for a short period of time, but forcing him doesn’t help him or change the situation at all, so maybe as he gets older? Again, too early to tell. (And, because I can, go Jamie McMurray, #26!!!)

And this morning? You can bet I didn’t pour the syrup on the pancakes until after he sat down.

It’s too early to say if it was a success — unless I define success by the fact he went to school, stayed the day without a call and I picked him up on at the same time as everyone else. It’s also possibly too early to say that I am worried about the rest of the year..or is it?

He was SO excited about today. SO. excited. In turn, I was really happy for him. Thrilled that he was so happy to show his friends his new rolling backpack (“My backpack is so cool! It’s worth $40!”) and the Rainforest Cafe lunchbox he saw back in June and had to have for school this year…even though I had concerns it wasn’t sturdy enough. He talked about making new friends, about playing on the playground, and the cool things he was going to learn. I had every reason to be optimistic.

He wakes up today,  a few minutes earlier than I told him he should get up and get dressed, but he was smiling, and completely dressed in the outfit he chose for his first day. (It was 100 degrees here today, but he had to wear the new ‘softs,’ his loose track pants that I happened upon last week at Target for $5, mainly for home wear because he loves softs.) The softs went with the new Pokemon t-shirt well enough, and he even accessorized, wearing his engraved shark’s tooth necklace. Things were looking good.

He eats breakfast quickly, and watches the clock all morning. We leave, early, only to find out that the whole school population had arrived early, and we were easily 1/2 mile down the block….past construction, dust, dirt, and lots of badly-parked cars. But that didn’t deter him. By the time we got to his classroom, he’d said hello to a boy from his class last year, and when I got in line to say hello to his teacher, I put my hand on his chest and his little heart was pounding so hard and so fast. (Wahh, first threat of tears for me, he was so nervous.) He finds the seat with his nametag, while I have “the talk” with his teacher…you know, the talk where you say “My son’s got special needs/autism, he should be fine but if not, please don’t hesitate to call or email me. I’m available any time you have questions, or you can ask the teacher from last year or the aide. Oh, and he’s got space issues, so you should probably watch to make sure he doesn’t feel his space is being invaded.” I then found him sitting at his desk, looking at the “About Me” page that every child had to fill out. Hug, kiss, and I’m off…no tears, just a little prickling in the eyes at what a brave, big boy I have.

Fast forward to minimum day pickup time. Again, everyone and their family was there to pick up their child, and the crowd at the gate (by the time I finally made it from out south 40 parking space) was a wall of people 25 thick. Out came the first graders, and despite the principal asking people to wait, many parents and older siblings decided that the ‘please wait 10 minutes before entering to find your child’ really didn’t apply to them. (And I secretly wondered if these were the same people who’d triple-parked, parked at a 90-degree angle to the sidewalk, or otherwise abandoned their car where it shouldn’t have been because they’re so important that they shouldn’t have to walk as far as we mere peons did.) Finally, my son’s teacher was visible, and I could tell very quickly that I needed to get through that wall of people, quickly.

If only that was so easy. I had to step over strewn backpacks, squeeze around moving children, while I’m wondering why people who’d already gotten their children were still standing there, blocking the way. I got to ds relatively fast, but he was already shoving through the remaining crowd to get to me, with anger all over his face.

What’s wrong? What happened? “My lunchbox broke!”

For a split second, I felt so bad for him and wanted to rush it back to Rainforest Cafe and demand that an $8 plastic lunchbox should be sturdier. Poor thing doesn’t deserve to have such a prized possession break so quickly. But, no time for that — I had to deflect, re-direct, and get him to realize that an irrepairable broken handle doesn’t mean the end of the world for the lunchbox. “After all, it goes from backpack to lunchbox basket, back to the basket, then the backpack, right?” Crisis averted. Tomorrow’s lunch is already in it, minus the special crustless sandwich I’ll make tomorrow morning. Lemonade’s already in the thermos, and homemade cookies already bagged.

Moving on to discussion of the rest of the day. “It was pretty much bad.” Wow…where do you go from that? I asked why, knowing it would be a long list. No one played with him at recess. He didn’t have enough time to eat his whole lunch. He isn’t happy with his classmates, none are his friends. And, he was bored. Really bored. Nothing to do. But, the saving grace? The same aide as last year! We’d seen her in the morning, but I don’t think he appreciated her as much until the day started. Bless her, she gave him water and snacks and that’s what he talks about being the best part of the day, how she ‘cares about him.’ Remind me to give her a hug and tell her again how much I appreciate her and her genuine concern for my little guy. You can’t find people like her enough. Oh, and he likes his teacher, but she’s just part of the package for now, it’s too early to see what he really feels. (Should I be worried that in our two-minute conversation, when I tell her that no, thanks, I think he’ll be okay in any seat, but he has space issues…she says “There are 21 kids here…” I’m not sure if that was just a statement, or a teeny sign that my son’s going to need to conform and fit in? I am probably reading more into that, but given our history, I am hesitant. Thank God, his teacher situation was wonderful last year, though we did have an aide have to be removed due to inappropriate behavior towards him…no, not *that* kind of inappropriate, just a woman who shouldn’t be working with special needs children if she doesn’t understand that with them comes behaviors.)

Anyway….I think the problem I’m having is that he was so excited, so prepared, and I of course want nothing but good for him. To see the littlest thing take away from the expectations he had? How do you avoid it? And when it happens, how do you fix it? It shouldn’t be so hard. It should be fun. He should just be a child.

Anyway, he’s happily playing upstairs now, Pokemon strewn all over our room, watching Tivo’d Pokemon episodes. We talked about lunch, making friends, the lunchbox, etc., so I have hopes that tomorrow will be a better day. Advance preparation is such a big help, and now that I’ve seen his class, teacher, class location, and schedule, I have a lot more info with which to prepare him. Please, think happy thoughts for the little guy that he can fit in enough, but that the situations fits to him, too. I’m all for inclusion, but only to the extent that it’s manageable, fair, and makes sense. Sometimes accommodations need to be made, and sometimes those needs pop up out of nowhere.

Off for dinner…day #2 will come soon enough.

I sit here in my quiet bedroom…that alone is an anomaly. Quiet time? In my room? Write this day down in red on the calendar. Now, I didn’t say the rest of the house is quiet, but my room is…for now. Our respite nurse is in the other room, keeping an eye on the little guy as he bangs on his bongos that go along with the Donkey Kong game on our Gamecube. (Note: this is a great game for sensory input and hand-eye coordination, though sadly Nintendo is no longer making more games, so good thing we got a Wii.)

I’m breathing in the scent (odor? maladorous scent?) of hair dye. It’s time to cover those greys. I poured a glass of wine to savor while I’m letting this dye do its job, and ahhhh, let me just say this is an enjoyable moment. Quiet…wine….privacy…”me” time. Definitely a red-letter day, and an unusual occurrence.

My husband wasn’t too into having respite. But, I’m home with the kids every day, all day, while working 40 hours a week here at home, and I need the afternoon/evening once a week to get my errands done or to just go sit with a friend over a coffee…or to go wine-tasting, shopping, eyebrow threading, whatever it takes to have a peaceful no-child evening or get some chores caught up. We were blessed with a great respite nurse, a lady with a wonderful attitude, a compassionate demeanor, and lots of love to give. Ds loves having her over, even if he doesn’t always admit it readily. So, dh is now on board. As long as it works, it’s all good.  Never understimate the importance of having that time away from your child, even if it means you’re holed up in your bedroom, watching Dr. Phil, drinking a glass of boxed wine while waiting for a $9 box of hair dye to do its thing. That time to not have to be in charge, to not have to solve the world’s problems, and to let your child learn to deal with someone else is priceless.

The last few days, we’re noticing more and more situations where ds is unwilling to listen to the reason, any reason. We try to tell him something brief and clear, such as “You need to get into the bath now” (after his 10-minute warning) and he blows up, yelling, spinning into a full-blown meltdown, ending with him quietly sobbing, telling us he only wanted a minor deviation in the plan but he didn’t communicate it so therefore, we didn’t understand. In fact, looking back, this is pretty much what has happened each time he’s melted down this past week; a minor issue explodes and we’re trying to figure out what pushed him over the edge and what he was trying to tell us that we missed. We can be face-to-face, him raising his voice, us trying to keep ours low, and struggling to communicate.

I’ve had a lot of people tell me “You’re so fortunate your son speaks.” Yes, they’re right. We are. And we are grateful. But, speaking doesn’t mean communicating. An autism diagnosis means that there’s some problem with communication, now or in the past. Some people who see children with autism that are verbal fail to grasp that autistic kids can talk, as in “where’s the communication issue?” Not only do they not see how far the child has come, but they don’t get the difference between speech and communication. They are two entirely different things. So while a child may have language, it doesn’t mean they use it right, or that they comprehend the meanings. Then throw in body language, and communication can even get much more difficult.

Last night, cuddling with my sweetie after the last meltdown of the day, I was really sad for him. He felt that he’d been telling us so clearly what he wanted, and not only was he trying to get out of doing what we wanted, but we really didn’t get his meaning…at all. And because he was so busy trying to get us to understand his meaning, he was getting more upset as time went on and making less sense. But, in his mind, he made sense. What exactly do you do then?

Since school is starting soon, and this problem seems to be getting worse (because he’s getting older? getting bored at the end of summer? who knows?) I want to make it a priority to work on. I’d really love some recommendations of good books to address the communication gap we’re experiencing. Or a suggestion of who to speak with: social skills therapist? speech therapist? psychologist? I don’t think he needs help, but rather we need to know how to work with him to help him express himself sufficiently, without the anger that builds up, then the sadness that just breaks our hearts.

And maybe it will also help tackle the meanness that comes along with it. I’m so glad he can say “I love you, Mama,” but the “You’re a jerk, Mom” hurts.

Well.

That’s the response I just got telling ds to watch where he kicks his foot as he’s laying on the couch to prevent him from putting his foot through a huge plate glass window.

Not only am I a jerk, I’m ‘mean,’ and I’m ‘stupid.’ All because I don’t want him to hurt himself or end up in the ER with stitches.

Some days we can’t win, can we.

If you’ve ever been to a seminar or a conference, a truly good one, you’ll know what I mean. You learn so much, it’s hard to absorb it all, process it, and do enough with the information. That’s how I’m feeling now. I attended the Back to School: Autism/Asperger’s Conference last weekend in Pasadena, California. WELL worth the $165 registration fee.

I arrived around 7:45am on Saturday, hit up the Starbucks coffee bar in the conference hall first thing, and roamed the vendor booths. I headed for a jewelry booth, where I replaced my car ribbon magnet, badly faded from three years of heavy California sun, and then made my way to the TACA booth, where I was thrilled to snag the last medium “Green Our Vaccines” t-shirt. Score! I’ve been wanting one of these t-shirts since the rally in June, and I grabbed one for dh, too. Then off to the keynote speaker’s initial session, Carol Gray and social skills. Not only does she share wonderful information you can relate to and easily absorb, but she’s got a wicked sense of humor that I loved. I could have listened to her all day, but I really wanted to attend Mark Woodsmall’s IEP sessions. Always good to be sure I know what I’m doing in that arena, particularly with goal setting. I capped the day off with more helpful tips from Carol Gray in regards to friendships and bullying. I wish I could find a brief write-up and share it with my son’s teachers!

As usual, there were far more women than men in attendance. While I think it’s great that couples could attend together, I think I was more impressed that so many dads were at home watching the children so the wives could attend. And women were bonding all over. While bumping into each other at a vendor’s table, we’d share tips on good products to buy. While waiting for a speaker to start, we’d discuss why we were there (parent, teacher, speech path, etc.) and talk about our kids. And there was a lot of nodding going on. You know, “the” nod. The nod that says “I know what you’re going there. I’ve been there. I feel for you.” You can’t get that just anywhere.

On Sunday morning, Rick Clemens covered inclusion with some facets that you don’t normally think about. I only wish I had the money to utilize the services all these speakers offered! (And that some were available within safe driving distance of the black hole that is the Inland Empire. Our pickings out here are slim — and I only have so many vacation days from work, so it’s hard to parse them out to last enough for all the appointments we have, much less any family time that’s so important.) I then moved on to the Healing the Family session, which was a wonderful affirmation that the family truly is entirely affected by an autism diagnosis. There was some sniffing going on there, as the speaker shared an analogy that hit me far more strongly than the Trip to Holland ever has or will. After that, it was a session about anxiety and that session alone was worth the drive that day, though I think I picked a really perfect agenda out of all the things available as every session was extremely helpful. It didn’t take long for me to realize that while I know my son has anxiety issues, there’s a lot of his social skills deficits that are due to anxiety than just social issues. Then to round out the day, a session with Susan Golubock, a professional in the field of Occupational Therapy (and also on the spectrum) was fascinating. And kudos to the person who was brave enough to ask (paraphrased): who are we ‘normal’ people to decide what’s ‘right’ and change you and everyone else on the spectrum?

In the end, I came home with a bag of documentation that I’ll be filing away for future use, samples of supplements that ds just may be willing to try, and names/numbers of people to call if ever needed. I bought a gorgeous “Connecting the Pieces” autism bracelet, and won the grand prize at the TACA raffle, an awesome assessment/appointment for Linda Mood Bell. Can’t wait to use that!

Now I just have to put all that information to good use. I’ve already been working on changes in how I phrase things to ds, and to be sure he really understands what I’m saying, what the question is, and to listen more when he talks before I begin forming the answer in my head. He’s had some pretty significant meltdowns over the last week, but he did tell me this morning he’s looking forward to school starting. YAY doesn’t begin to cover my feelings. He’s already talking about the friends he’ll make, and what he’ll be learning. I will be talking with the school next week to get his teacher’s name, and hopefully a quick tour of the classroom…even better, maybe a quick meet with her so I can alleviate some of the ‘who, where, when, what..’ questions that are everpresent.  It’s been one.long.summer.

My son’s big on routine. Sameness. Repetition. Familiarity. It all holds true with his diet, too. I’ve mentioned in a prior blog entry how food is a huge issue for us. He has a limited set of foods he’ll eat, and those foods need to be prepared the same way, too. (Only pancakes for breakfast, cut a certain way. Only a turkey or ham sandwich for lunch, no cheese, no mayo, just mustard. And no crusts.) Dinner is our experimental meal of the day. Because I have to cook for at least six of us daily, I don’t have the time to cook two meals — nor do I want to — so we try to get him to eat what we’re eating each night, some with better success than others. He’d eat chicken nuggets nightly if we let him, but only if they’re not crispy. (He’s got issues with smells and textures, and has been known to gag up many a bites of food and never look at them again.)

So, what to do? Each night we try to get him to try what we’re having. I made gumbo on Wednesday night (homemade, and may I say it rocked?) and for his bowl, I picked out the green peppers. I also didn’t use onions and very little spice, just enough to be tasty for everyone but not too ‘spicy’ for him. (Everything that tastes odd to him is ‘spicy.’) He ate it! He loved the rice, sausage and chicken. I tried to get him to eat some leftovers of it yesterday, as I was out late through dinner and suggested dd give him a bowl of it, but he wouldn’t try it.

If he eats something one time and it’s bad, chances are, he won’t try it again. He’ll shy away from it faster than you can say “I’ll make you more chicken nuggets!” We’re a non-red-meat household, so we eat a lot of meals that include chicken and ground turkey. We cook pretty well and can be creative, but with him, creative in the traditional sense doesn’t work. Instead, we need to be creative with food preparation in a boring way. Same ingredients, different ways…and every now and then, we throw in something different and hope he goes for it. He’s got a nose that beats most any I’ve seen, and he senses out a different smell, and taste, before the fork gets to his mouth….holding half the food initially on the fork before it left the plate and the ‘non-messy zone.’

I’m going away to the conference this weekend, so I am curious how things go with dh and their meals. Dh can be great at persuading him to try different things….but ds is really stubborn and too much pushing can result in a nightmare of a meltdown. Seen a few of those this week, but at least the bitemark faded!

So how do you introduce new foods into your child’s diet, especially if you avoid certain items? How do you get him to eat enough, and is only eating a few things a big deal, other than trying to find ways to make sure the diet includes proper vegetable and fruit amounts? Without anyone going crazy? 😉


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 36 other followers

Twitter Updates