Autism Watch: 2007

Archive for October 2008

We’ve visited the same pumpkin patch for years now. Petting zoo, bouncers, slides, games, swings, reverse bungee, you name it. We’re a few days behind this year — crap week continues — and we expected the crowds that were indeed there. What we didn’t expect was that half the rides weren’t operating, the petting zoo wasn’t open, and the games weren’t being run. It pretty much left the bouncers and slide for ds, as he’s not one for the swings. The petting zoo has always been a favorite, so he was bummed from early on. It came as no surprise, after dh dropped $16 on 20 tickets, that ds had a meltdown. But let’s back up a bit.

First, ds ran to the bouncer. Last year, two tickets got you two runs through it; this year, one. Fine, we do it a couple of times then move onto the bouncer slide. After handing the guy a couple of tickets, the attendant tells ds he can’t jump onto the slide. So much for that ride, ds of course wouldn’t go on it again. Then he moves onto the bouncer, just a regular bouncer with only two other kids in it. Five minutes later, in which he was at least smiling, a kid bounced on him when he fell, and we hear him screaming “he broke my neck!” After apologizing to the mom because ds called him stupid — and mom, if you’re out there, thank you, you were nicer than most people I’ve seen in public in a long time and it is/was appreciated — ds had a complete freakout. Screaming, yelling, people staring meltdown. Dd and I walked around looking at pumpkins. (They had a 95-pound pumpkin. 95 pounds!) People were still turning and staring, but eh, bite me. Yeah, he sounded obnoxious, but he wasn’t hurting your night, and even worse, he wasn’t going home with you, so go find something else to stare at.

We head out, and I point out a family to dh to give the tickets to. “Pick them, Honey, they have three small children in that wagon, how cute.” Little did I know, until mom turned around, that we know them. Yay! Ds calmed down, but we still made him leave…there’s gotta be consequences for epic meltdowns, now that he’s aware enough to understand.

Next year, we may skip the pumpkin patch altogether. We can’t promise that the activities he wants will be there, though we understand. After all, they’re there every year otherwise, the booths are still there, who knew? Some days it really seems pointless to drag him to places he thinks he wants to go but can only turn into disaster…and I’m tired of disasters. Really, so very tired.

He’s upstairs making a loud mess with magnetics. (Yes, we still let him play with ‘those’ toys. He doesn’t eat them. And if he did, I’d, here’s a thought, supervise my child. He can choke on a piece of food, a marble, or any other item that a child should be supervised with, so I’m not going to scream that they be removed from the shelves.) He seems happy, though his fundraising toy that he waited weeks for broke after a few minutes. (Yes, I actually wrote the company for a replacement.) It’s always something.

If you head to the pumpkin patch with expectations, drive by first. Have a backup/alternative in mind. And don’t forget the camera!

And because I’m in a bad mood, here’s a mini-rant. Second-graders need Halloween celebrations..or if we’re being ridiculously politically correct, ‘harvest celebrations.’ It’s as important to the parents as it is to the kids. They’re kids only once. Let them party, let them have fun. When every other kid of the same age is carrying out caramel apples, sacks of cookies and goodie bags, it isn’t fair. It’s  not a big deal. Give them 30 minutes, give the parents time to spend partying with the kids and their class, and consider it time well-spent.

It’s been one of those weeks — actually, a ten-day span of one crappy incident on top of another, interspersed with fun things and relaxing moments…followed by another crappy incident. Today, it was going outside to pick up ds from school to find that something (someone?) had 100% shattered my driver’s door window, rendering it undriveable. Here I sit, a birthday dinner to attend in two hours, waiting on an auto glass repairman. Ka-ching. Ka-ching. But what’s another $210, right? (It’s got after-market tinting, so of course it costs more. Sigh.)

Anyway, I had one of those autism conversations last week, one where you wonder later if you should have just shut your mouth rather than actually share your opinion and help someone else see the other side. The kind where you wonder why you should have to be the one to cave dare we lest ‘offend’ someone, when in reality, I was really hoping to share something that no one may have shared before.

I’ll back up.

We attended a Halloween party on Saturday. Family-style, with kids running all over. As usual, it was a blast. Lots of activities for the kids, and accommodations for my little guy so he didn’t have any (as many?) meltdowns. While sitting with some other parents, a woman married to teacher was telling me about vaccinations. I (mistakenly? stupidly?) shared that my friend had just experienced a vaccine reaction in her child, quite a severe one. Pretty banal comment actually, as we’d been talking about kids needing help in school. Well, the ‘teacher in the family’ light went on, before I even had a chance to realize it. Apparently this woman’s husband doesn’t believe in the GFCF diet, doesn’t believe in anything biomedical or anything, basically, outside of school- or doctor-provided therapies. Okay, fine, sad, because I have seen it work firsthand, but you don’t have a child on the spectrum, so it’s understandable she’d have no experience because she’s not living it daily. But, here’s where the enlightenment comes in. Turns out, her husband was outright angry at parents who do believe the diet because he doesn’t believe in it, and instead believes that the improvements in the child must be from the work the teacher does; in return, when a parent claims that their child is improving, it somehow takes away from the work the teacher is doing.

Thankfully, the games started so we were interrupted. I had no intention of getting into a heated discussion, so it was a welcome interruption. For me, it was enlightening — I had no idea before why teachers didn’t want to cooperate with the diet. I’d always thought it was the extra work involved. It never crossed my mind it was something as petty as resentment. Aren’t personal feelings supposed to be removed from the equation when it comes to teaching children? I mean, I know they’re not, but wow, the vehemence, the irritation towards the diet or anything biomed that could help the child. But, I don’t feel she was, and hence, he was enlightened. Instead, I think there was just irritation that yet another person felt that the teacher wasn’t the primary reason for improvement in an autistic child. And that’s just sad. It speaks volumes about why the different sections of the autism community can’t get it together and just agree to work together, letting each do their part and cooperating with only the benefit of the child in mind.

There are some great teachers out there, but until they all agree that we parents still know our child best, that they only see the child a small portion of his life and therefore need to listen to us, and that we are entitled to making the decisions about what a child needs and receives, there’s still so much work to do. There’s no place for resentment, irritation or hurt feelings when it comes to doing whatever it takes to improve our children. Even if something only helps one child, who is ANYONE to say it’s not a proven success? Isn’t that one child a success? Does a success have to be 100% of the time to count? 50% of the time? Who determines success? Would teachers be cool with us telling them how to raise their children? They’re there to educate our children, not raise them — vast difference. As long as school is mandatory, we’re a team and any good teacher will acknowledge that.

The more I think about this whole conversation, the more it worries me. We parents are supposed to be openminded and entrust our children to virtual strangers all day, but some teachers don’t trust us in return. It really does work both ways. Unless teachers are willing to truly listen and try to learn, we’re going to be butting heads for years to come. Don’t take it personally if parents don’t thank you for the GFCF diet improving their son’s bowel habits or removing rashes or stopping headaches; those aren’t your realm. A chid that feels better will behave better and may speak. It makes sense. You’re one important part of a big picture — if we can make it a co-op, we’ll all benefit.

If a parent talks with you about something, you don’t have to agree, but at least remember that you’re not dealing with the child 24/7. The parents are. They’re paying the bills. All of them. The diet, the biomed, it does more than help things that you’ll ever even see or hear about. Those hours with our child, it’s just a portion of the day.

I think we’re really, really lucky. We have an excellent teacher for our son right now, and we did the last 1.5 years. She works with us, and the more stories I hear about things friends deal with, or conversations I have like the one explained above, I thank God. Seriously. So to ds’s teacher, thank you. You are a blessing.

Do you ever want to do that with your child? Ever want to hide him away from all the problems and sit and watch movies and eat popcorn forever in your own quiet, safe home…on an island somewhere?

So that’s extreme…a little.

My son’s mood swings this week have been up and down. Up and down. Up. Down. It’s been a really long week, with ds snapping at us for the littlest of reasons, yelling at us for nothing, angry out of nowhere, mean words, throwing things, the list goes on. Then a little while later, he’ll smile. Sometimes apologize. And the most heartbreaking of it all? He truly seems unable to control it. He’ll sit on my lap and sob because he’s a ‘bad boy.’ Bear in mind, “bad” is not a word I’ve ever used to describe any of my children. Telling a child he or she is “bad” is bad parenting, in my opinion. Kids aren’t bad. Kids are kids. Kids make mistakes, get sick, or have health issues, like autism or mood swings. So for him to say he’s a bad boy breaks my heart.

Last night, after an evening of giving his respite nurse a hard time, we had to tell him that he wouldn’t see his nurse anymore. When we told him, in front of her, she wasn’t returning because she’d gotten a new job, he didn’t react other than to smile. Thankfully, the nurse laughed to herself. (“See? He’s happy.” Argh.) She understood him, and we’ll miss her. Ds didn’t appear to really feel one way or the other until her car was pulling away, and he couldn’t catch it when he ran out the door. “I really liked her, Mommy.” Another argh. So glad you did, Son, but why didn’t you tell her that when you had the chance?

Afterwards, we tried to talk to him about it, and the other mean things he’d said to her (one example is calling her stupid). We tried to discuss all his anger, and he ran off and refused to listen. A few minutes later, he pulled me, not speaking, to a note he’d written, on top of which he’d placed a ring and ‘jewels’ that were his. The note said that he loved me forever. I looked at his eyes, as eye-contact is rare, and he started to sob. That’s when the bad boy discussion came out. He mentioned how he can’t help it, he can’t control his mad, and how the mad just comes up. Then the sad comes. Should a child have to work this hard to be a kid? Should he have emotions so strong he labels them?

This morning, I dropped him off at school and watched him run off when he saw a boy he knew, a boy that plays with him — sometimes. I couldn’t help but laugh out loud, probably looking crazy to any onlooker (but I wasn’t wearing my mercury/autism t-shirt, so no one was looking) because he seemed so happy, so different from last night. I was so excited to see him spinning on his butt on the ground, ‘breakdancing’ to the Jonas Bros music played on stage. Too cute. Yet when I tried to leave, he ran to grab me and hug me so tight, it was hard to leave. The Asst. Principal walked by then, after the third episode, and called to him…off he ran!

Dh is there at the school picking him up now. I’m hoping and praying for a good pick-up, a happy afternoon for ds, and less obsession about the kids and issues that bugged him throughout the day. I’m hoping his mood swings settle down, so he can feel in control and happy. Such a smart, funny, beautiful little boy with creativity, uniqueness and solid out-of-the-box thinking deserves no less.

Autism needs more funding, more treatments available to the average person at an affordable price (or covered through insurance) and more understanding. Less celebs bashing and showing their ignorance about it. More people refusing to do anything because that one child out of 150 is not theirs. Do me a favor — if you’re not a parent of an autistic child, you know one. Or you will. Understand them, and if you don’t, respect them. Ask about their child. See if they just want to talk. Don’t limit it to three minutes before you’re running off to watch a tv show, but give them your full attention. Hang out with them. Take a bottle of wine or a six-pack of soda and some cookies. Share stories about your children, and listen to theirs, the good, the bad, and the ugly. There’s enough people out there who ignore us, stare at us, talk about us, or otherwise want to pretend it’s not there. Be the support they need.

For those of you who have autistic kids, you know Autism. You know how it goes with you wherever you are, usually even when your children aren’t with you. It’s an entity, with its own personality, requirements, and mood. Autism is sometimes hiding under the rug, other times it’s right there and can’t be slightly partially ignored, even by those who wish it’d climb back under the rug. Sometimes Autism is noisy, other times it’s quiet. (And the capital A in Autism isn’t a grammatical error — when referring to an entity, it needs to have a name, and we all know names are capitalized.)

Today, Autism went to the dentist. So did our son. Our son was there to have sealants put on two teeth; he’d had reflux very bad as a child, and it wore off some of the enamel on those back teeth. He’s already had four root canals, because Autism decided it didn’t like its teeth brushed and gagged every time we tried. Our son sat down in the chair, and I followed in to sit with him, with dad relegated to the waiting room due to space issues. (We use an office that specializes in special needs children, so it’s a small price to pay that we can’t both be in with ds.) The hygienist explained the process to him, how they’d clean those two teeth first, then do the sealants, but then she had to step out for a few minutes, and the waiting got to him. Big time. Before she returned, he’d thrown the stuffed puppy (used to cuddle or boost a little one up in the chair) and was starting to get out of the chair to make a run for it when she returned. On went the fancy glasses he requests so the bright light doesn’t hurt his eyes. Oops, wrong color, he wants the white ones. You know, the same ones as the last appointment. We weren’t two minutes into the cleaning when I had to swap with dh because ds started to squirm, whine, cry, and then yell. Dh came in, then there ensued an argument over putting vaseline on ds’s lips. He’s got a lip-licking stim that causes major clown rashes when it gets windy, cold, or just because. Meanwhile, I’d already gotten out two tight knots out of his hair from his hair twirling stim, which worsens with anxiety, and he was definitely anxious. Vaseline applied, and dh left the room. The cleaning was done, and then the dentist arrived to apply the sealants. She patiently showed him every piece of equipment she was going to use, and explained that touching the gloves was a no-no, and that his job was to leave his hands laying on his tummy. That worked for about two minutes…and I am probably being really generous. It got worse before it got better, but after the dentist got the pillow that holds his jaw open (instead of him having to hold it open himself), he was good, as long as they suctioned out his mouth frequently. He forgot the movie playing on the ceiling or the cute bugs on the walls and the puppy that was back in his seat, but soon enough, it was over. I give kudos to the staff for their patience and willingness to work with him, and I hope they get paid well. They seem to appreciate his unique personality, which is a big deal in itself. And when the receptionist commented what a different child he looked to be from two years ago, ahhhh, what an affirmation. To us, he looks better, but we’re with him each day so getting an unbiased opinion from someone else is always a blessing.

So you can understand how Autism indeed went with us. It went home with us, but stayed in a separate room for a few minutes of homework time…even if that was when ds ran to the livingroom to do his homework on the floor because he couldn’t focus with anyone else breathing at an audible level. He knocked out his spelling work, and we headed to his favorite restaurant, Logan’s Roadhouse. (Shout-out to them for peanuts on the table, a great O.T. exercise, where ds can smash, squish and mash peanuts until they scream, then drop it all on the floor and start over again.) He and I enjoyed our ‘date’ night, and for the most part, Autism was quiet. That was probably because ds ordered steak tips, medium well, so ds had to work a bit to eat them, and that too is a sensory experience. A whole bowl of cinnamon apples and half a glass of root beer and we were good to go. To Target. The latest Indiana Jones movie was released today, and not only does ds really want to watch it, but it’ll give him something to do with older dd when we take younger dd to her choral performance tomorrow night. Oh, and I’m cheap, I like to buy the movies we want the week they come out because they’re on sale. He even let me shop for a few miscellaneous items (Halloween candy…18 pounds, to be exact..and that’s just a drop in the bucket..office supplies, a shirt) before he started bugging for an Icee that I had no way in heck intentions of getting. Moosetracks mint chip ice cream was waiting at home, already paid for, as healthy an ice cream as we can buy, and it wasn’t about to hype him out in my car or give him something to spill on the leather seats. (I know, I know, leather seats…but we bought the SUV a few weeks before A-day…autism diagnosis day. I’ll never forget getting lost in the midst of nowhere on the way to our new neurologist, having to call and get directions, explain why I’m late, deal with dh on the phone giving me no help whatsoever with directions because he was in denial and refusing to work with me or participate in the process, while having to perfect driving the Tank, a vehicle I’d laughed at for years because it’s a Road Barge, yet was suddenly necessary due to family size and the need to tow a trailer. Anyway, I digress….)

Autism’s getting ready for bed now. So is ds. We had our very one-sided conversation about Pokemon, while he was doing his required reading log minutes, and ds announced that he got the best fundraiser results out of his class. (Go us, go us…we worked so hard for that, he has no idea.) Not sure what time Autism will wake up tomorrow, but hopefully it’ll be in a good mood. It’s windy here, fires on the news but none nearby. Fires cause a regression that’s hard to explain, but even the wind can cause some explosions out of the blue, so it’s just one more reason I hate the wind.

And now it’s time to go give ds hugs before he falls asleep. Dentist appointment is over until March, when it starts all over again, hopefully minus any work beyond a cleaning and check-up. Phew.

When your child’s given an autism diagnosis, there is most definitely a change in your life. There has to be, or, well, nothing changes. But what about changes beyond the ones that you think about firsthand? Beyond the way you discipline your child, what you may expect of him, and what you make him do, what else has changed?

I came across an article early about having a more natural, healthy home. It made me think about the things we’ve done to go ‘green.’ That led to thinking of the bigger picture, changing our lifestyle overall…but again, beyond the obvious.

In the last year, we’ve dropped some serious big bucks on these changes, mainly in the kitchen. We dumped every plastic storage item that had ever been nuked and gave the kids a lesson on how the only time food touches plastic is when we bring it home from the store or refrigerate it as a leftover. (Dh loves leftovers, and he didn’t want to go glass…but I did impress upon him, or I hope I did, that he should dump it on the glass plate before he nukes it.) On top of the plastic went all our teflon-coated cooking pots and pans, covering them with all our plastic utensils. Then with all that newly created room, we were able to organize, recycle a boatload of odd kitchen gadgets we’ll never use, and then we filled the space with stainless steel cookware with no coating or anything else unsafe. (And I’ll never cook on anything other than cast iron or stainless steel ever again.) We also bought all new stainless steel utensils, and glass bakeware. And because I don’t want to do good five days a week and blow it the other two, I even did the same with the RV.

Dh and I drink out of stainless steel refillable water bottles, aka canteens. Not only are they safer, but they keep our water colder much longer. And the money we save since we use filtered water. I pitched the Splenda packets and fake-sugar beverages and got really good at making really good tea. (Who knew there were so many flavors? I have yet to try the chocolate-infused tea that I bought at the new Fresh & Easy last week.) The kids don’t re-use their water bottles, and they don’t sit in a heated car or lunchbox. I’d get rid of water bottles altogether if I didn’t think the kids would lose them by day 3. And at $11 a pop, it’s not in keeping with the current economic climate.

We stopped using ‘regular’ store-bought cleaning supplies. I make homemade kitchen cleaner, window cleaner, and Lysol-type organic germ-killing cleaner. (The cost of the supplies to make a year’s worth of these cleaners cost about the same as two months worth of store-bought stuff…I even re-used a squirt bottle I already had and only had to buy one.) We watch the types of candles we burn, I bought cloth cleaning supplies to re-wash rather than throw away, and I use cheap washcloths on my Swiffer sweeper. We use only organic pesticides on our vegetable and fruit garden (and our flowers) and I’ve increased my veggie garden in the hopes that I’ll keep learning and eventually will have enough to seriously impact our grocery bill. Right now, it’s only saving us the cost of a few tomatoes and a heck of a lot of basil. (And basil isn’t like apples, it can’t be a meal no matter what you do to it, so I have a long way to go.)

One thing literally led to another. A quest to keep my son and other kids healthier led to a house that’s much better for our environment. Less toxins for the family, less waste and poison for the planet. I may not find a cure for autism, but I can at least keep the world safer for kids with autism now, or lessen the possibility that future babies will be exposed to toxins. There’s so much more we could do — if we were able to build a new house, we’d go with much greener supplies all around, and solar power would be a consideration, as it pays for itself in the long run.

Autism may have tossed our world upside down, but we’re much better people for it…inside and out.

And it was going so well…

Once upon a time, it was a quiet afternoon. Dh was at Costco, and my daughters were reading, napping, just hanging out in their room. Older ds was at his friend’s house.

Then…

BAM.

High-pitched screaming. Banging. Yelling. More banging.

Peace. Tranquility. Quiet. Gone.

Ds quickly made his way downstairs and it escalated. He went into a rage like I’ve not seen him do in weeks. Don’t get me wrong, he gets mad still and has his meltdowns and tantrums, but this was worse than any in a while. It took a while to get him into the crying stage, beyond the screaming stage, through the throwing everything he could grab stage, beyond self-injurious stage, and completely past the hurting mommy stage. At one point, he lunged me from beyond and jumpd on my back and head like a crazy monkey from a bad, b-grade movie. It took older dd to get him off my back, with me prying his hands out of my hair. My glasses made it out unscathed, because I’m good at ducking but mainly because I tossed them off in the 4-seconds dd held him after she got him off my back. And no marks!

He’s out front playing football with dh, after a while of self-constructed O.T. spinning on the swing out back. He’s not going to be on the computer again until Wednesday — that’s a computer exile because the reason for his meltdown was that the computer had some issue in the midst of him playing it.

Life is good.

When I started this blog back in November 2007, I had no idea how it would work out. Would I blog enough? Would anyone read it? Would I get discouraged and quit? Would my honesty and forthrightness (or my bluntness, if I’m being completely honest) turn people off? Would there be enough to write about?

As the months went by, blogging became easier. Sure, there were a few weeks where I was either too exhausted to share the week or I didn’t want to be a downer. We took a two-week vacation and I got sick a few times. But overall, blogging has become a way of life. In the beginning I had to think about what to write about. Now, I often have fodder waiting at any point, and when things go on, it’s weird how one of the first things I think is “Oooh, I need to blog about this.” How life changes.

The day of my 100th blog post has been an excellent one. Dh had a special project at work, and my 13 yod is camping with the youth group for the weekend. 18 yos worked until 4am, slept a few hours, then left to take his gf down to San Diego for their ‘anniversary.’ (Is 18 mths really an anniversary most people celebrate?) Anyway….my 19 yod slept in, then had to go to work. It all left just me and ds and we had quite the day.

Woke up at 8am, snuggled, enjoying the colder temps that are finally here in the morning, and planned a trip to Starbucks. Starbucks was busy but tables were available, so ds snagged us a table with cushy chairs and waited while I got his “coffee” (chocolate milk in a mini-coffee cup that I almost want to keep, it’s so cute) and doughnut. Mmmm, a nonfat pumpkin spice latte hits the spot on a chilly morning. Came home, did some updates on the PCs (my field, so I’m anal about keeping them all protected, clean and organized) and when the local favorite mini-golf place opened, we headed down to play a couple of rounds. We had a blast! It wasn’t without ds getting frustrated a few times when he couldn’t control the ball. A little talking off the ledge…and a $2.50 bottle of caffeine-free root beer…and we were able to move on. He’s been playing Toontown most of the afternoon, intermixed with spreading out all 100 of his friends (aka stuffed animals) all over the playroom, and I was able to get a lot of little things done, like packing up earrings I made my sisters-in-law, mixing up some new tea, nothing really exciting, just a list full of little things that you have to get done and just can’t squeeze in on other days.

Oh, oh, I almost forgot! I squeezed in some treadmill time and did the fastest 5k time yet! My 19 yod and I decided a couple of weeks ago to join a 5k race next spring or summer, and I’m determined to get my times into at least an acceptable running-time range. I just started running in early-July, and I’m loving it…most of the time.

Dh and I are getting to watch the Lowe’s Motor Speedway Nascar race, mostly uninterrupted (ha, not sure it’s really mostly but I’m being nice…I’ve been called to the playroom to check out more things than I can count) and other than church tomorrow, I am really glad to stay around the house. We made plans for a trip to the Phoenix race in November, and can I just say EXCITED?? Way to go, Jamie McMurray, fifth place!!! (Even if ESPN/ABC won’t interview you post-race, YOU ROCK.)

So my 100th blog entry is a mish-mash of everything and nothing. I guess that’s good though. I’ll take slow now and then. 😉


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