Autism Watch: 2007

Archive for June 2008

We’re annual passholders at Disneyland, so we try to go at least once a month, if not more often. With leaving for vacation soon, we weren’t sure we could fit it in but we wanted to check out the new Toy Story Mania ride. In one word: fantastic! Again, Disney has succeeded with a unique ride that is definitely going to be a big hit. Before you go, prepare your child that it’s not so much of a ‘ride’ as it is an event in which you participate. The car you sit in spins a bit (four to a car, but two to a seat, and you won’t see the other two in the car at all during the ride) and moves semi-quickly but there’s no up/down. The thing that you might want to be ready for is that some of the objects ‘fly’ at you — it’s 4-D flying, but they do an amazing job of feeling the objects as they fly at you. Ds did great, didn’t freak at all, and insisted on going back again later. So we did!

For¬†a Monday after school was out, the park wasn’t that busy. We waited a mere 3-4 minutes to get our special assistance pass renewed, then headed off for rides, rides, and more rides. Tower of Terror is a ‘must ride’ every time, and we even got him to go on Soarin’ Over California. And, wonder of wonders, he was just tall enough to ride California Screamin’ — and he got front row! Talk about proud, I thought dh was going to cry afterwards. ūüėČ

As you know, or maybe not but you will now, autistic children have unique personalities. They usually know what they want, and trying to change their mind is often futile. You end up trying to understand what they want, then learning that’s often futile, too, and just go with the flow. This was clear again when we took the little ones shopping and told them to pick a souvenir bigger (e.g. more expensive) than what they normally buy, as an ‘end of the school year’ celebratory purchase. First stop, dd finds a keychain, and ds finds a “crystal skull” (so named since he saw Indiana Jones’ latest movie). Next store, ds finds this big, thick walking stick, topped with a wooden skull. (Notice the theme here?) Cute, but honey, really, how are you going to carry that the rest of the night, and what will you do with it? Two more stores later, and ds is running to the skull-topped walking skull immediately consistently, like he knows the store layout. I pick up the tag; it’s $35. So it’s not just a walking stick, it’s an expensive walking stick….handcarved out of some special wood in Bali. Okay, that explains the price. But again, how are you going to carry it the rest of the night, and what will you do with it? Thirty minutes later, I had the answer. He wasn’t going to carry it; we were. And he was going to name it and make it his new friend. After we got him back in the stroller, we spent the rest of the evening saying “Honey, hold it straight up. Straight up! STRAIGHT UP!” to prevent the skull from taking out unsuspecting guests. To his credit, it apparently was a cool souvenir. It got a slew of comments but all he cared about was that it was his. And what does he do with it? Sleep with it…carry it around everywhere…it took a bit for him to realize that it wasn’t going on our vacation with us. No, really, we aren’t carrying it and I doubt the airline would have let us¬†carry it on anyway. (Then again, at this point, maybe it’s just lucky if we autistic families get to stay on the plane anyway? Maybe I shouldn’t joke. I’m getting on a plane in about 35 hours….and landing at Raleigh-Durham airport. No, I’m not flying American Airlines.)

If you’re considering a Disneyland trip soon, go for it. If you can, try out the Blue Bayou restaurant at the Pirates of Caribbean ride, but make reservations or you will be out of luck. It’s not cheap — kids’ meals are $7-$8, and it comes with loaded plates (we aren’t GFCF so I didn’t ask about it) and adult entrees start around $27.99 and go up. Also, they offered my dd a ‘larger’ portion of the child’s mac ‘n cheese plate, and we said yes…for $18.99, who knew? But, the service is phenomenal and the environment is different from anywhere else you go. It wasn’t without its entertainment, courtesy of ds and his behaviors. He loves to shove food in without silverware, and the plain pasta went in so quick, he ended up gagging. No more pasta. He tried the chicken. Didn’t like the consistency. No more chicken. The grapes and strawberries were a little more successful…a little…but his favorite was the rolls and butter. (Again, we’re not GFCF so I know this is easier for us than it would have been otherwise.) The cookie, decoration from our Creme Brulee Trio dessert, was not chocolate chip. Disneyland really helps make the whole visit as ‘normal’ as possible, but you’re not without little reminders all evening about the necessary accommodations.

Not sure if I’ll be able to update for a couple of weeks. It depends on our internet access while traveling, but I promise to have some interesting stories to share when we return. Enjoy your fourth of July! (This year, we won’t be spending it with ds hiding in a box in our driveway…not only are fireworks no longer allowed in our city, but headphones and a firm snuggle on my lap have really improved on the holiday.)

Wow, autism’s not welcome anywhere, is it? Gosh, wish I’d known about that when I specially-ordered my child, or I’d have asked for some other¬†more socially acceptable disability.
Nothing says it better than the ABC article itself: Autistic Boy Kicked Off Plane

I’ve read a lot about this on various sites on the net. So much hatred out there, so much selfishness, and the prevailing attitude of “Don’t inconvenience me with that crying, I paid for this flight!” (Didn’t the mom and her child pay, too? Maybe they didn’t like the inconvenience of having their first flight cancelled or the passenger commentary she heard on the second flight? And newsflash, it’s public transportation. You want no inconvenience? Charter a private jet.)

Moving on. I’ve seen quite a few people ask what we parents of autistic kids would want from the airlines. I wasn’t on that flight, so I can’t speak for anyone but myself, but what do I expect from an airline, or what would I expect if my child was having an issue?

1) Compassion and actual patience. I’d expect the attendants to treat my child with as much respect as anyone else on that plane. I’d want to be treated with respect, too, not as though I was some uncooperative moron who couldn’t understand basic rules. I’d want to be treated as though I am doing the best I can for a difficult situation and being trusted to know enough about my child to do what is right. This would mean actually getting out of my face if there were continuous nudges to quiet him down, and give me the five minutes it would take to get him to breathe and calm down. I could then get him back in the seatbelt that he was in until the attendant kept tugging on it, making him uncomfortable.

2) Stop the other passengers around me from making audible¬†nasty commentary. If my crying child was expected to shut up because he was inconveniencing others, I’d expect those others to not subject us to their rudeness. It really does work both ways.

3) Truly give me the help you promised me when I called ahead to tell you prior to booking that my child was autistic. If you couldn’t help me, you should have told me then, when I asked you if you’d help.¬† Educate your employees about special needs, and don’t discriminate unfairly against a specific disability. If a person in a wheelchair¬†is given extra time to load, I expect the same patience, time, effort and compassion that passenger and his family gets. No disability should be treated better than any others.

4) Know that we really don’t want to inconvenience or upset others. Know it upsets us to know we’re the cause of someone else’s upset. Know that we are embarrassed by the comments and the glares, and that we’re sorry. Know that we’re not selfish, over-indulgent parents, but just parents trying to use the same right everyone else has to get from Point A to Point B as quickly, quietly and safely as possible. Know that we want our child in the seatbelt, and we want him safe. Know that we are doing everything we can, as fast as we can, to make that happen. And know that your continued “are you done yet??” commentary will not help, but could only upset him.

5) We know autism is a puzzle. We don’t always understand it. We know our son looks ‘normal’ so it may seem as though we’re just letting him getting away with things. But know that doctor after doctor has confirmed our diagnosis, and if our child looks normal, give it five minutes, he may not. Know that when he does appear normal, it’s because of hours/weeks/months/years of therapy and working with him to improve him. Know that we are incredibly proud of our children, and we know what a long road they’ve traveled to get where they are. Know that keeping him at home won’t teach him social skills, and he’ll never improve if not exposed to different things. Know that we want him to be quiet as much as you do, but that our approach will work and yours won’t. Never letting him travel doesn’t help him, it only assures you won’t have to hear him cry…but that won’t stop the crying infant across the aisle (whose crying may upset our son, yet we can’t tell them to shut the baby up, that would be rude…so we suffer, in silence, a new theory for some people) and it won’t shut up the passenger in the back who keeps ordering beers and is now loud, and it won’t shut up the woman singing along to her iPod without thinking how we can all hear her.

Overall, we really don’t want special rules. We don’t want to stand out from everyone else. We just want to be able to get in, sit down, give our child a few minutes to prep, deal with any issues, and fly. Just like anyone else. Disabilities are supposed to be protected, but apparently that only goes so far as to not inconvenience everyone. Pretty sad state of affairs. I won’t fly AA, that much I know.

Seven days of ‘school’s out for summah…’ — he’s wayyyyy too into Guitar Hero and he loves to sing me that song. Now I just have to wish he’d get the words right.

Anyway, it’s 108 here today. I’d bought a ton of outdoor toys for ds to play with to keep him happily occupied, without thinking we’d get a nasty heatwave that would blow my plans to smithereens. So, here we are, grasping at things to do, while the bubbles, sand toys, and chalk boxes sit outside in the sun.

Yesterday, dd took ds to the beach for the day. They spent six hours digging and building, and ds even attempted to surf, much to his unhappiness. Ds+1 long board+2 people holding his hands=wipeout and hysterical tears. And mommy wasn’t there.

Summertime is going to bring some challenges. Today ds woke up with a rash everywhere that sand had managed to touch, and it required a quick trip to the store for an oatmeal bath, then a long bath. He doesn’t earn the nickname “high maintenance” for nothing!

One phenomena I’ve seen is that friend invitations are very frequently one-sided during summer…or maybe it’s all year long and I’m just noticing it more now? Ds has a few friends that call to ask to come play with him, again and again. One of them invites him to their house. So is our house just super-fun? Or is he too much to handle, though others haven’t really tried? I try to understand people, because I know the fear of what could happen if he melts down, if he gets upset…but it’s a lot of ifs, and I wish people would give him a chance. I know, or at least I like to hope, that there are other reasons — suddenly changing plans, illness, etc., things that pop up without warning — but it happens with so many people. We have kids over, and they say ds is welcome to their home at any time, or they say they’ll invite him over next time, but when he asks to come over, they’re always busy, and the invitation never comes. However, there they are at our door again, wanting to play. If I say no, ds doesn’t have the social interaction he needs just for the sake of making a point….or is it really more than a point, if he isn’t having the fun and opportunity of enjoying someone else’s toys and home? Is it just me, or is this another symptom of autism? Is it one of those painful realities that’s a result of being upfront that your child is autistic? Yet, if you don’t tell them and they can’t figure out why your child is having apparent social issues with their child, and they light into you because your child is ‘rude’ or ‘mean’ or aggressive, is that any better? So far, ds doesn’t realize it, another symptom of autism, I suppose. He does ask me now and then why so-and-so doesn’t invite him over, but ds also would prefer to be in his own home, with his own routine, more often than not. And I’d prefer him to be like any other kid and play at others’ houses. Then again, maybe this has nothing to do with autism and everything to do with me and my house being available?

Just another one of those puzzles that I, well, puzzle over. I worry about the big things with autism. Will my son learn to eat, and like, more than pancakes, chicken nuggets and pizza. Will he have a successful year in school with a new teacher. Will he learn to wait in line, not throw toys when mad, and not hit himself in the head when truly upset? Should we really have to worry about if people will be as nice to him as he is to them?

Moving on….it’s 108 here. Have I said that yet? We’ve got just a week left before The Vacation, and all shopping is done. My last worries are of things that I can’t pack: pancakes, chocolate almond milk, and a warm bath, all things very necessary for happy days. The thought of packing makes me want to procrastinate until, hmmmm, say, Thursday or Friday of next week. Then I have to show our housesitter where everything is, how not to set off the alarm and have the police show up, and how to take care of all 47 animals, not to mention the blind dog. Yes, really.

Here’s to hoping everyone is enjoying their summer, especially now that it’s officially here.

Summertime. I look forward to it each year: kids sleeping in, not having to make lunches, put out clothes, organize backpacks, sign papers, hearing the kids giggle, playing, cuddling, etc. But by the end of day one, it had already begun…”it” being the difficulties that my younger two present whenever forced to co-exist without planned regular activities.

This week’s a bit different, so I do have hope that it will get easier, that this week’s an anomaly. Then again, I am probably just being overly optimistic. My older son graduates high school tomorrow, and we’re having a party a few hours after the ceremony. (This is a ‘what was I thinking?” moment.) We have another grad party to attend in an hour, and one in between our son’s ceremony and party that’s going to be just a quick drop-in. So, we’ve been busy preparing. Lots of food prep, cleaning, shopping. I’m sure he’s picking up on the stress and reacting to that and the change in his daily routines and environment.

I took him and my 13 yos out to lunch today at Rainforest Cafe. LOVE this place, but it’s sensory-overload on a good day. Two minutes after we place our order, Barnacle Boy decides that he doesn’t like that dd has done the MadLibs first, asking me the questions. Major flipout. I finally get him semi-calm, sequestered in a chair away from the table where he could make his mad face and cross his arms as much as he wanted without upsetting anyone else. I go to look at an aquarium to distract him, and smack, there goes the ketchup bottle. Thank God RC uses plastic containers now. Fifteen minutes later, he looks up at me and says “I’m happy now,” accompanied by a big hug and the sweetest smile¬†I’d seen all day.¬†Ahhhh, gotta love his mood swings.

At this point, I’m most worried about getting through ds’s grad ceremony tomorrow morning. Beyond that, we’ll see. T-minus 15 days before we leave for vacation, wish us luck.

When I started this blog, I had intentions of covering all aspects of autism, but focusing mainly on sharing news as well as day-to-day things that occur. Lately though, with all the news happening, I’ve gotten caught up. I’ve posted on so much of the hype that I’ve gotten away from my original plan. So, I do promise to get back on task to a more rounded blog about autism…but I do want to talk about the new “Just let him be” campaign that’s supposedly growing in numbers, those who want us to just ‘accept’ our child the way he is, and stop all the treatments. (For more info, see ABCNews.com for this: Autistic and Proud)

What??

That was my first thought — stop all treatments? Stop looking for a cure and accept them for who they are?

I thought about this further, and couldn’t get past the thought that anyone who thinks we haven’t accepted who are children are really doesn’t know what they’re talking about. I think everyone other than those dealing with new diagnoses, those who haven’t had a chance to grasp it all yet, accepts their children. I accept my child’s autism. I accept his differences. I accept his tics, his stims, his rituals, his needs…but that doesn’t mean I’ve given up on thoughts of happiness and functioning as he wants to within society, and I don’t see him being able to do that if he’s on the floor in a tantrum, biting himself, wetting/messing himself, or not understanding a change in routine. For non-verbal kids, I don’t think their parents should have to just ‘leave him be’ when it comes to not ever hearing their child speak. I don’t know, my child’s verbal, but from parents I’ve met, they’d give their right and left arms to hear their child say “I love you” or “I’m happy, Mom.” Who can blame them?

So moving on past ‘acceptance,’ what about finding a cure. Why wouldn’t we want to stop another generation from watching their child bang their head on the floor, line up their toys for hours, or flap their hands so much they can’t pay attention to anything else. Sure, I love and accept my child for his uniqueness, but does that mean that I should be okay with autism being out there, and I shouldn’t want other children to not have to go through this? It’s okay for some people, but why make that decision for others?

Heck yes I want a cure. I don’t believe we’re going to find it in genetics though — maybe partially, because these kids are genetically predisposed to autism, but we need to focus on why these children develop normally, even if they have a few oddities, then suddenly don’t. There’s something in our environment causing this, and the research needs to go there.

I accept my son for who he is. The differences that autism has ’caused’ him in make him unique. I often envy his outlook on life, and I don’t necessarily want to change it. I really wish I didn’t care what others think and would just dance in the aisle if I felt moved. I wish I could be comfy in flame-patterned lounge pants and a purple Pokemon t-shirt if I wanted to…in public. My son can. My son is a very unique individual, and I’m so very proud of him.¬† I also know that until the world accepts his differences, he could be in for a hard time as he gets in higher grades in school. But that’s not his problem, that’s society’s. Autism’s often teased, harassed, bullied and ignored, where other disabilities are accommodated. Still though, if I can help him feel more happy, more safe, more comfortable, then I’m going to do that. If that means biomedical treatment to help heal a funky rash, to stop a stim that leaves him with clown mouth, to help him sit down long enough to eat, to eat more than 7 items, to help him be, ahem, regular and not have a hurting tummy, then I’ll do that. In my opinion, to allow your child to suffer just so we can be prideful is wrong.

My child will be old enough to make his own decisions eventually. Until then, I’m going to do any and everything I can to make him healthy and happy. If autism takes away from that, I’ll be first in line to fix it as he deserves nothing less than healthiness and happiness. I can do that while still being proud of the unique little guy that he is.

Lately, in the firestorm of arguments about mercury contributing to vaccine, new vaccines being put on the schedule, states considering making vaccines mandatory, I’m seeing pro-vaccine parents becoming more and more vocal. So many thoughts on that, where to start. I undoubtedly will muddle my words and my thoughts, but here goes.

I often hear pro-vaccine parents saying that the risks of the vaccines are worth it, to protect their children from diseases. But what about that 1 in 150 children who IS the child who has the side-effect? As long as that 1 child in 150 vastly affected by the vaccines¬†is not their own child, the risk is worth it? Does that make my child’s autism acceptable damage? Who is anyone to make that choice for someone else?

If someone wants to vaccinate, why the need to persuade the rest of us to do so? Why¬†not just vaccinate without the need to defend it? We’re not taking your vaccines away. Those who us who don’t want to vaccinate have the number one goal of making vaccines safer and not injecting toxins into our children, not tell pro-vaccine parents what to do. Such a glaring difference between the sides.

I’ve heard the words ‘collateral damage’ a lot lately in regards to the children who are affected by vaccines. When is damaging any child, any human, in the name of saving others acceptable? Shouldn’t we be aiming for no collateral damage, instead of accepting the numbers and being glad it’s someone else’s child? If we know that we can make vaccines without the garbage that’s toxic, why isn’t that a priority? Is your money better spent on Starbucks than paying a few more dollars for a safer version of a vaccine?

Greening our vaccines is a goal that will help all of us. No child/human should be injected with formaldehyde, ether, antifreeze, mercury, or anything else that’s toxic. If a product can’t be in our food, in our makeup, or in pet vaccines, should it be in a vaccine? Greening our vaccines will still give all the pro-vaccine parents the choice to vaccinate. Nothing we ‘green vaccine’ parents wants is going to hurt anyone else, yet the potential for harm if the vaccines aren’t changed is vast and WILL hurt people. It HAS hurt people. It’s CONTINUING to hurt people.

Pro-vaccine parents need to understand that those of us who don’t want to vaccinate with the current vaccines are not anti-vaccine. We are pro-SAFE-vaccine. There is a huge difference between the two. HUGE. We want to continue to eradicate disease; we want to keep people safe and healthy; we want to offer immunity (as much as is possible) from diseases that could maim and kill. We don’t want our children to be collateral damage to that cause. Our children didn’t sign up to be the poster children for vaccines so the collective “we” can say “Yeah, but at least less people have measles this year. Phew, glad my child dodged the autism bullet.”

Everyone needs to realize that any time they give their child a vaccine, they are potentially going to cause their child to be THE one in 150 who will get autism or some other illness. Not all our children are genetically pre-disposed to have that happen, but it’s like playing Russian Roulette.¬†Who knows if their child will be THE one?¬†Is it worth that risk? Those who usually say it is don’t have a child with seizures, or with autism, or with some other illness/injury that has negatively impacted their life, and may never go away. Things change, irreversibly, when your child isn’t potty-trained, bites himself, can’t talk, has to wear headphones to leave the house…the list goes on.

My favorite comment of all: “Unvaccinated children put mine <vaccinated children> at risk.” Hmmm, this one’s so easy, I really don’t get why people still say that anymore. IF vaccines worked, why would an unvaccinated child be of any risk to a vaccinated person? Yeah, I know, I puzzle over that, too.

Pro-vaccine parents often say ‘but there’s no definitive proof it causes autism.’ Newsflash, there is definitive proof that mercury is unhealthy. There is definitive proof that¬†ether, formaldehyde, and antifreeze are unhealthy. The bottom line is, even if these things don’t cause autism on their own, they¬†have no place in vaccines. If mercury is not safe in fish…in mascara…in pet vaccines…it is not safe in a flu shot. The fact remains that the autism rates have risen exponentially, and so have the number of ‘mandatory’ vaccines. It doesn’t take a genius to say that it deserves further consideration. Studies done 10 years ago don’t relate to today, as today’s world, the generation of children born in 1999-2001, the children who got 500x the number of mercury deemed safe for a 300 lb adult, who are newly diagnosed, or not yet diagnosed got a lot more shots than when studies were done. And the list is continuing to grow if agencies have their way.

We want a cleaner environment. We use¬†less-toxic cleaning products in our home, vehicles with less emissions, we recycle and do any number of other things to green our homes and conserve the environment. Our children, born/unborn, diagnosed/undiagnosed, deserve no less. If you shop for anything safer for your home, your car, your life, why not consider greener/safer vaccines? And if not, don’t bash my choice. Just don’t imply my child is acceptable collateral damage. There is no such thing.

Does anyone see the contradiction here that mercury in amalgams is bad, but putting it in shots is okay? (It was also removed from mascara too — apparently it’s bad near your eyes.)

When is this going to start making sense?¬† Thimerosal wasn’t taken out of vaccines back in 2000; new shots with that same amount of thimerosal were just no longer manufactured. Doctors were allowed to continue to use up their stock until they expired so children born/vaccinated years later still received thimerosal. It’s also still in the flu shot that pregnant women, children, and elderly are given.

Now maybe insurance companies will start covering porcelain fillings 100% instead of 60-80% because amalgams are cheaper and therefore 100% covered. If amalgams are bad, it makes sense, right? Then again, what makes sense (removing mercury from shots if it can’t be in your mouth, your mascara, or even your dog vaccines) isn’t always what’s done.

Yesterday’s rally was amazing. I wasn’t there, but I keep reading about it and the 4 minute video on CNN is nothing short of fantastic. Jim Carrey’s words about ‘too many, too soon,’ and clarifying, repeatedly, that we aren’t anti-vaccine, we just want safe vaccines, had to get some serious attention.

It’s great that finally the fact that mercury is BAD is getting mainstream focus from a major agency like the FDA. It’s a shame it took so long, and so many of us exposed our children to this. We have choices though — we know mercury is bad, and we need to stand up for our kids and not expose them to questionable toxins. (And by questionable, formaldehyde, ether and antifreeze are still in current vaccines, so if those aren’t questionable by way of being poisonous, what is?)

 

 


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