Autism Watch: 2007

Archive for July 2008

Loving your kid just comes natural, right? Wanting the best for him, doing all you can to ensure his safety and giving him all you can, within reason, for happiness? Looking forward to when they get home from school, playing with him, and just spending time with him, right? Wait, did I lose anyone on that last one?

A few days ago, I was returning at item at the store when I ran into a woman (with her child)who I’d met through a friend a while back. She has a young child who was dx’d with autism a year or two ago and my friend had tried to set us up to talk when her child was dx’d after mine, but the woman was first in denial, then was so deeply entrenched in self-pity (not about her child, but about the impact on her own life) that it never happened — her choice, not mine. I also think she had a secret feeling that I couldn’t understand her, because her life was ‘so bad,’ and mine wasn’t, though she knew very little about me. (And before you think I’m talking about someone who may just read my blog, I promise, she won’t. “That online stuff? A waste of time, I’ll talk to my doctor, thankyouverymuch.” Ooooo-kay.)

Last time I’d seen her, she was a working mom planning a vacation with her kids. She was driving a nice newish car, and looked like someone who paid a lot of attention to herself: manicured nails, modern hairstyle, non-wrinkled clothes, matching bag…not what I look like on a daily basis. 😉 This time? She was still driving a nice car, not quite as new, and the nails were still done, the hair was a different stylish cut/color, and she still looked really put together. But looks can be really deceiving, I guess. (And if a lot of people I know are any indication, you can be perfectly happy in a t-shirt and shorts with a ponytail and still be happy, so looks really don’t mean much unless you’re paid to be a model.)

First thing out of her mouth after I asked her how she was doing was a sigh. Not a good sign. Here I am trying to make a quick run to return something and replace it, and I could see a therapy session coming for someone I don’t even know very well…and here I am, a parent with my own struggles and my own issues to deal with. As much as I love to advocate for autism, educate, grow awareness and just be a listening ear, babysitter, helper, whatever, I am still a mom of a child with autism. We all deal with it in our own ways, but the fact remains, when someone drops a big problem in your lap without so much of a lead-in, I can’t help but kind of cringe. Selfish, maybe, but I think it’s more of a self-centered issue..hence, back to that “Your life can’t possibly be as <sigh> bad as mine.”  I love to help other parents, especially those with new diagnoses or other issues, but just because I’m not sighing my problems out to the first person who I speak with doesn’t mean there aren’t any. (I’ve actually considered being a paid advocate at some point, but only when my son is older. )

Now that I’ve gotten that out of the way — I bet you’re wondering what she said after the long dramatic sigh? She sighed again. Finally, after she’d impressed upon me how.truly.bad.it.all.is, she started to use words. She explained that the main reason for her sadness was that her son’s summer program was only half-day now. I patiently waited, sure there must be more, but that was it. I could understand the difficulties this would pose with her daycare, both with the cost and with the logistics, and I could sympatize. I work from home full-time because I know it would be hard to find a job that would allow the flexibility that’s necessary if a school calls or has a really bad day. But that wasn’t it. She didn’t like that he was around in the mornings later now, and therefore, she had to ‘deal with him’ before going to work. I’m not sure what look was on my face, but it must have been somehow inviting because that opened the floodgates. While she had some legit issues — we all know how difficult these kids can be, and how much time they can take — the list was, well, ridiculous. Some things she mentioned were things parents of neurotypical kids face. Others were more common among families dealing with autism, and others were singular to autism. Still, none of it prepared me for the facts of just how much she resents this child. How much she wants to leave the child with a sitter, ‘deal with the autism’ during the weekly O.T. session, but beyond that, ignore the autism and be angry about the behavior. I could say that this was because it was easier for her than facing reality, but I really think it was more of conscious decision. All in all, I got a strong feeling she really didn’t like her child, and really wasn’t interested in investing more time/effort to help him, so she was hoping someone else would.

Before I sound totally unsympathetic, I say again that I know everyone deals with an autism diagnosis in their own way. But after two years (which she emphatically reminded me) it’s time to move on. Deal with it. Face it. Step up to the plate. Be sad, be frustrated, whatever, but moping longterm isn’t fair to the child. The child deserves an engaged parent willing to do more, at any point, to help their child. It means sacrifice. It means giving up time from the manicurist if your child has a meltdown and needs mom to hold him tightly until he’s calm. It means finding a way to find family time together, whatever their type of family time may end up being — we all know it’s not always the same kind of family time other families may have. It means stop asking for someone else to fix your child, and learn to do it yourself in addition to outside help. Advocate for your child, don’t just whine. And when talking to another parent of an autistic child, recognize that it’s not a competition. We don’t have to one-up each other on who has it worse. We don’t need to compare bite marks or share only the bad things. There IS more to the child than autism.

So many of us talk about how we don’t want the label of autism to define our child. But, like the above woman, how many of us fail to follow-through? When someone asks how our child is, do we tell them how they broke our glasses in the latest meltdown, or do we share how they showed empathy successfully when their sibling’s pet died? Do we whine that we don’t have more respite or do we talk about how much fun it was when we played with bubbles outside yesterday? Do we blather on about the negativities related to our child and raising that child, or do we share the joy and happiness that we have a beautiful child?

I guess my point is that I love my son, issues and all. I look forward to time with him, and I will be sad when school starts, though I know it’s a good thing for him. I love to sit near him when his head is stuck in the Gameboy, watching his emotions and listening to his funny comments. I may wish he’d stop talking 24/7, but he talks, and for that I’m grateful. I’d much rather hear him quote an entire Pokemon DP episode frame-by-frame than the alternative. In other words, my son has good traits — wonderful characteristics — a personality that amazes me daily. I can’t let any of his autism-related behaviors overshadow that. I can’t wish time to fly by, I want to enjoy every minute…even if some of those minutes are spent stopping him from throwing something large and painful at me…because he’s my son. He’s my responsibility. When we have children, unless you have large movie-industry paychecks, we can’t special order our children. We get what we get. Some children are more challenging than others, but these are our miracles, our babies. To treat them any less is unacceptable.

And the woman I spoke with? I hope she gets some help. And I don’t mean just more respite, a larger support system (though she had a heck of a larger one than most already) or more services for her son, but therapy for herself. And maybe for her marriage, who knows what this does to them as a couple. I’ve not met her husband, maybe he’s in agreement with her? I won’t speculate, but the environment in the home as it sounds now just doesn’t sound nurturing. Even if autistic kids are literal and supposedly don’t pick up on things all the time, they are incredibly smart, and we never know what they are presuming from what goes on around them. I hope this woman stops leaning on ‘the system’ to take care of her child, and remembers she is still his mom.

And oddly enough, maybe, the child was with her during our conversation. I’m not sure how much he heard, he was playing with a handheld game, but he spoke to me, quite nicely, didn’t pester her to leave, only interrupted once to ask about buying a drink, and was quite the sweetie. Sure, we all know autistic kids don’t display behavior problems 24/7, and until we’re at home with them, all bets are off as to what mom and dad really deal with, but it was hard to reconcile the negative rant about this child when he was having such a good moment, however long it ended up lasting.

I did suggest she look online, but since she was still against that, I recommended some autism groups, some resources, and some books. I doubt she’ll follow-through, though I can hope. She seemed to know it all, and that nothing would help. (The thought of “But if something helps, what would she complain of next? went through my head.) We can’t just take our kids to their O.T. sessions, or their speech therapy, or their social-skills sessions or their behavioral sessions and then forget autism the rest of the week. It’s up to us to learn about autism. It’s like something we’d get a real education, a degree in, a career, but we learn it without the physical four walls of a school. When we start any other career, we learn a lot in a short period of time, start applying it, then continue to study it and research it. We learn about new products/tools/resources available for that career, changes in the field, and we look consistently to stay on top of it. I don’t see that any different from being the parent of an autistic child. Sure, some weeks we’re shorter on time than others, but it’s our job to stay involved, to stay on top of things in the autism community, to do whatever it takes to be the best parent for whatever kind of child we have. And to be thankful, to be grateful, that we have that child while we’re doing it.

Last night we faced the first pet death in a long time, at least one that the family as a whole was invested in and attached to. (Not that I don’t like all animals, but when my son’s bearded dragon eats a chinese water dragon, my heart doesn’t break.) It was that of our beloved 3.5 year old guinea pig, Mocha. Just seeing that in print hurts. I am a wimp, I know it’s ‘only’ a guinea pig but she was a pampered piggy, a member of our family for over three years now, and a well-loved addition to our home. She will be very missed, and I wonder how long it will take for us to walk by where her cage was without forgetting that we don’t have to lean down to say hi to her.

 It happened late last night, and ds was asleep, so he woke up this morning, excited to go play at a friend’s home (yay!) and didn’t notice her missing cage. It wasn’t until we were walking through the garage that he noticed her cage, only half hidden. “Mom! Mom! Why is Mocha’s cage out here? WHERE IS MOCHA?”

I leaned down and gently told him Mocha had died last night, then I watched his face closely to see what direction this was going to take. It could either be “Oh” or “OHhhhhh NOoooo.” It was the latter. It took about 30 seconds, after he said “But xxx <xxx being my younger dd> will be so sad when she comes home!” before he started to cry. To sob. To wail. We talked about how Mocha was in Heaven, and ds said he wanted just one more year with her. I explained that Mocha had been a pampered piggy, she was always happy and we’d given her a good home. He agreed, then tried to stop crying. “Okay, I’m a big boy, I will stop now,” even though I knew he wasn’t over it. More wails, then another attempt to stop. Third time’s a charm. We quietly walked to the truck, with him a little more slumped over than usual but no longer crying. On the way to the friend’s house, he again talked about dd’s reaction when she returns from her mission trip on Thursday. (Can I just say now that I dread that discussion? She will be a mess, and who can blame her? She leaves, her pet’s fine, she returns, it’s gone.)

While it’s a very sad topic overall, I’m impressed with ds’s handling of it. He showed really good empathy, and he seemed to understand that death is permanent. It’s a lot different from when my dad passed 2.5 years ago, and he wanted to play Gameboy during the funeral, and later would blurt out, completely randomly “I’m sorry your Daddy died, Mama.” But I have to look at the bright side that as much as you can learn from a situation like this, ds did.

We do have one other guinea pig still, Chai. You can bet she’s going to be a lot more spoiled now than she was before, and that’s always been a lot. Hug your pets, their lives pass too quickly.

Ds has been asking to see Wall-E since it came out, which is when we were in SC/NC/VA in early July, and seeing a movie on vacation just wasn’t in the cards. (But mini-golf, beach’ing and other fun stuff definitely was!) Youngest dd left this morning for a mission trip for the next six days, and ds was uncharacteristically loving towards her, giving her (stuffed) animals aka ‘friends’ to take on the trip, hugging her, and sleeping on her floor last night. We promised him a lot of activities during the time she was away, because what else will he do with the time he normally spends fighting with her?

Hence, tickets to Wall-E. Disney did it again — a movie that’s entertaining for adults (though nothing beats Monsters, Inc. or The Incredibles, imo) and kept ds happy the whole time. He LOVED this movie. He felt adequately empathetic when necessary, and it was ironic to me that these were robots, people with no facial cues and only voice tones and arms to gesture when they were upset. He was sad when appropriate, and excited the rest of the time, including giggling hysterically several times, even when it was only moderately funny to the rest of us. But, he stayed awake, the entire time! (It’s such a reminder that 3 years ago, he’d have slept through 3/4 of it because he was too overwhelmed to do anythin else.) He was double-fisting the popcorn, and squirming in his seat as long as he could last, not wanting to miss the movie until he absolutely had to. He also chewed has his weight in bubble gum, but whatever it takes, right?

Wall-E’s a great movie for little guys like ds. Not overwhelmingly loud/bright/confusing, with basic characters and a cute plot to follow. And just the right length! Well-worth the overpriced movie tickets and crumbly popcorn. (And it was sure better than sitting home bemoaning the sudden expense of having to replace my SUV windshield this morning after a flying rock took it out.)

I’m still seeing so much in the press and on the net about Weiner. The articles that agree with his inaccurate and harmful information are frequently agreeing with the theory that parents just want to medicate their kids for their behavior, and all will be good. Thing is, if he knew anything about autism, or if anyone who agreed with him actually did their research, they’d know their is no magic pill for autism. Or is there? If there is, why have I been paying out-of-pocket for therapies? Why am I fighting for services? Why is my son on waiting lists for things that will help him? Heck, sign me up for the ‘cure the behavior’ pill and I’ll take a look.

Oh, that’s right…more misinformation and ridiculous theories or “knowledge” based on other misinformation…probably based on more misinformation.

There is no pill/medication for autism. Yes, there are some medications that may help — for example, when your child is pullling out his fingernails, hurting himself or others seriously, or scraping his face every five minutes, to the point of blood, we can try Risperdal or Clonidine…and we can hope it makes a difference. If they are older and/or suicidal, and therapies aren’t working, we can hope an available medication may work. But no pill out there…NO pill…actually ‘fixes’ autism or its behaviors enough for any parent to chase it down. ADHD may be helped by a medication, but ADHD is NOT autism. Some autistic kids are ADHD, but that’s just a by-product. If you know so much, get your diagnoses correct.

Non-verbal kids’ parents probably wish there was a pill to help their child speak. I’d venture to guess many parents of autistic children wish there was something as easy as a pill, but the fact remains, a pill is a band-aid, and a pill won’t fix things permanently.

Mind boggling that we’re ‘after medication.’ Buy a clue, people. If Weiner had said “99% of <insert race/sexual orientation/gender/descriptive word> were all <insert derogatory word>,” the general public would be all over it. But why not, autistic children have been kicked out of school/class, thrown off of airplanes, legally restricted from church, and told to leave restaurants. Easy targets I suppose. And illegal if it was anyone else. Hell in a handbasket if it continues…and people wonder why parents of autistic children speak up so much. Wouldn’t you, if your rights and your child’s rights were disappearing by the second??

I was going to do a normal weekly or twice-weekly update on latest news in the autism community, but you’d have to have your head in a cave if the first “Weiner” talk (Savage’s real last name…I can’t help but refer to him as that) you’d hear is on my blog. Not only would I repeat what is readily available all over the internet, but I’d be joining in the hype and I’m not sure I’m ready to do that.

Don’t get me wrong — I don’t think blogging or talking about him is a bad thing. The news has to get out there, and grassroots viral marketing is the best way to do it. Word-of-mouth is a beautiful thing. But, at this point, I almost just want to move on and let the current momentum continue to see it on to its fruition. Maybe Weiner will be fired, maybe he won’t. Maybe his show will be removed from *more* stations/networks, and maybe more advertisers will remove their ads from his shows, but I trust that in the end, good will have come from it even if the autism community never really gets the ‘you were wrong, 99% of autistic kids aren’t brats’ and so forth. So, what good will one more blog do? Probably not much at this point, so I’m going to move on. But, since most of the news in the community these days is about Savage, I’m not sure there’s much else to cover. One really good thing, as has already been pointed out, is that this media attention is helping with autism awareness. I’d prefer to see that as a focus, instead of looking reactionary demanding an apology for an opinion, however misinformed.

In the end, while I definitely am not a Weiner fan, and I will never listen to him, I have bigger issues in my life and I can’t let the flurry of anger over his ridiculous comments to take more time/energy out of my day than they already have. I have an autistic child to raise. I have skills to work on with him, I have games I want to play with him, and I have cuddles I want to give him. Spending hours emailing people and his sponsors, I just don’t have that kind of time. That’s not to say I’ve not done anything, but that I can’t let it take over. We parents can’t let a negative situation like this drag us from our priority: our kids. Maybe it’s because I work so I don’t have the spare time, so I don’t want to offend but I just have to let go at this point. So, my next goal is to find some autism-related news that has nothing to do Weiner and does not have the word brat or racket in it. Got any cool links to share?

Every year, we look forward to vacation bible school, aka VBS. Two hours of craft, snack, lesson, and play. Sounds like a good experience, yes? Apparently the real answer is no, at least if you ask my son. This year, he has pronounced it boring, and says the best part of the day was the snack. Okay, good, at least you ate…I can look at it positively, right?

I suppose though I should get out of my little happy bubble that he didn’t have a major meltdown during those two hours and put together a plan of attack for tomorrow, what I’ll do when I try to get him dressed and he starts to pitch socks at me…or worse yet, the ever-present Gamecube controllers..though that would mean he’d have to stop playing if he threw it at me. Then again, that hasn’t stopped him before.

I digress.

Tomorrow will come before I’m prepared, I can feel it. I haven’t yet mastered the time stopping skill I’ve yearned for, and instead I’ll have to actually deal with the reality that is, well, reality, and figure out how I’m going to get him out the door without taking the door jamb with us. He’s got one heck of a grip. The offer of a really cool t-shirt emblazoned with the VBS decal hasn’t done it this year. Nor has the CD that I figured would be good for immersion. $11 down the tubes. (But come VBS or high water, he IS wearing that t-shirt tomorrow.)  I can see some down and dirty discussions tonight about the reasons he should go to VBS, but they’ll probably end with “Because I said so.” When ds wants to argue, he can argue..and argue..and argue. He’s got an insane sense of logic and manipulation skills, and uses them against us whenever necessary, and when you’re dealing with a child who often doesn’t want to leave the house, that’s often.

There’s also the reverse of this situation. I could just…I could just…wow, this is hard to get out, but I could just..deep breath…let him stay home and not go. What’s the worst that could happen? He’d miss out on something he doesn’t know because he won’t know what he missed? (Does that even make sense in writing? It worked in my head.) I’ll have to ponder that a bit. As much as I want him to be happy and not force him to be something he’s not, part of me still wants him to experience what everyone else does…at least the fun stuff. Is that bad? Maybe I don’t want to know, because I still haven’t found a way to let go my own notions of what he should want to do just because ‘neurotypical kids do it.’ That’s my own obstacle to climb, I suppose.

In other news, as a distraction I spent about 30 seconds reading about how some free-speech shock jock of another name called autistic children ‘brats,’ and went further on to call autism a ‘racket.’ I could expound further on this ridiculous sensationalism but I’m not giving him any more play. Free speech, better ratings, whatever the excuse, the American public isn’t buying it. We know a reach for ratings when we see one, and we won’t be baited. Have your pitiable laugh at the expense of someone else, all in the name of temporary fun and/or more listeners, but few people found it entertaining…or at least those with the ability to read and think for themselves.

Praise of the the day? $3.24 bubble guns on sale at Target. An inexpensive way to keep a little guy busy for hours, happily and somewhat cleanly, at least with the help of a little water.

So you didn’t see me on the news getting kicked off the plane because my autistic son was disruptive. Score! Kudos to Delta Airlines for being as accommodating as we could wish for. We were able to pre-board without any hassle whatsoever, and let me tell you, it makes all the difference. Other than running out of milk on one part of the trip, there were no issues with Delta at all…even the flights, though changed, left on time. Way beyond my expectations!

How to summarize a two-week trip in one blog post? How about I just list what we did: visit family, fish, swim, go to the beach, mini-golf, visit several Nascar racetracks/shops, attend a beautiful wedding, drive to D.C. and check out all the memorials, spend July 4 at Colonial Williamsburg (complete with celebratory fireworks in the rain), go down in the caverns in VA, eat, eat, and eat some more….including an evening in a ‘fancy’ restaurant, a first for our crew altogether. Ds was unsure what to do with the crystal water goblet, and others around us were unsure what to do with a family of six actually talking at the table next to them, but then a family with a baby came in and we were a thing of the past. In the end, all the activities were fun, we were exhausted, but we fit in every thing we’d planned…success!

Now to the details about ds and the trip. Any break in routine of course means potential for meltdown…and meltdowns did occur. Lots of strange foods, noises, crowds, and the incessant heat/humidity. He ate an actual full sandwich for the first time ever (this means eating the crust) and he sat through a wedding without needing an electronic visual stim aka Gameboy. He drove a go-kart at Nascar Speedpark better than most adults, and he went without eating pancakes for breakfast every day. He got hooked on “Cherry Bubba,” aka any red kool-aid (despite my better judgment, due to the red dye in it) and he slept alone in a room, though he didn’t always realize it. He got so much exercise, he slept in the airplane on the way home! (Maybe it’s because, to his body, it felt like three hours later than it was, but I prefer to think it’s because he was just plain tired out…a first since he was, hmmm, 17-18 months old?) He did refuse to watch the fireworks the last night there, a huge display put on by his uncle, whom he loved, and he did fight with his cousins because he’s not so great at interpreting ‘typical boy play,’ but we look back at the memories, the time, the effort (and the bills) with happiness — a wonderful, relaxing trip without tons of plans and stress, and we are so glad we got beyond the fears and did it. If you’re holding off on a trip because you’re afraid of the ‘what ifs,’ I say go for it!

So, now that I’m back in the groove, I’ll be back posting about daily inane issues and news in the autism community. (That is, if the ants that we returned to stay abated and I actually can stay in the house or if I have to move to the RV until it’s under control.) Sorry for the long break, and hope everyone’s having a good summer.


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