Autism Watch: 2007

Archive for May 2008

You poor thing! You don’t have to finish that. I don’t want you to have a sickness, by all means throw the rest away…after you stop gagging.

You’d have thought it was brussel sprouts. What was it? A chocolate covered donut.

My son’s feeding issues have returned with a vengeance. Years ago, he ate 8-10 things without complaint. Then it increased, and he ate much better, though still with sensory issues — he’d gag easily, as textures really bug him, smells would bother him, and he was very limited in what tastes he wanted. Chicken nuggets have lasted throughout the years, and pizza’s a favorite the last year or so. But lately, he’s back to only wanting pancakes for breakfast, a turkey sandwich (no cheese, just mustard) for lunch, along with a selection of several snacks (like certain crackers, grapes, homemade cookies) and every dinner he wants chicken nuggets or pizza. Everything beyond that is a battle. He gags, wretches, whines, complains and will run and hide if made to eat anything else. Part of it appears to be the food, and part appears to be just the act of sitting still.

So, I didn’t say a word when the donut went in the trash, and I happily heated up his pancakes knowing he’d at least have a full tummy. But, in the end, what to do? Are food issues a problem with your child? I’m open to any/all ideas on increasing my son’s interest in food and getting beyond some of these sensory issues.

I was standing in the checkout line of Lowe’s last night, in the throes of a migraine that was only growing worse, when the people in line behind me slapped down some things onto the counter that we were still occupying.  I looked down and saw the first item was a triple-pack of those spiral-y lightbulbs..you know, those mercury-ridden things that may save some energy but could expose you to a neurological hazard? I turned to dh, and asked him what he thought the man would do if I told him about the problems with those things? Dh looked at me thinking I was kidding, and reached for the debit card slider. Louder than necessary, if I’d just been talking to dh, I said “Don’t knock their bulbs over — might have to call HAZMAT.” Dh either really didn’t hear me, or is getting used to me, or agreed with my passive-aggressive public service announcements. Someone has to tell these people, right?

We are trying to go green, in some regards. We’ve started very internally — a safer home environment by way of stainless steel cookware (no Teflon), not heating in plastic, safer cleaning products — but those lightbulbs will never find their way in here. Not only can they be unsafe when broken, but they are also reported to contribute to seizures, and we have a daughter with seizure disorder.

It’s great that a product to save energy is now becoming more affordable and available, but people need to be aware that you can’t just throw these things in the trash. They have special requirements for disposal, and you can’t just pick up the pieces or vacuum them up when you break them. At what cost are we saving energy?

Well, if it’s just a ‘stinking’ basketball, why are you so bent on taking it to school? Huh? HUH?

One sentence into my blog and I’ve already digressed. Then again, that’s life with autism around, isn’t it? Things are fine one second, and the next, they’re not.

This morning, things seemed to start out fine. Ds came in around 7am, after a long discussion last night that I really do mean that he needs to stay in bed until then. One hurdle overcome. The morning continues, with normal breakfast and a round of Animal Crossing with his big brother. Then the time comes to brush teeth. OKAY, MOM. Imagine his teeth grinding together through the “okay” portion of that two-word sentence, then very pronounced disgust when saying “mom.” And so it begins.

Finally, he’s downstairs ready to leave. His older sister was taking him today, and he took it upon himself to invite a neighbor to ride with us. Fine, as long as you behave and don’t give dd a hard time. “DON’T SAY THAT TO ME, MOM.” This time, no teeth grinding here, he just outright yells. Somehow it’s okay for him to yell like that in front of his friend, but it’s not okay for me to correct him. Weird logic. Dd pulls her truck around front, but by then, ds is convinced he’s taking the basketball to school. No, not gonna happen, dude. Back and forth with him about why not: you’ll lose it or it’ll get stolen, it’ll be a distraction, how are you going to carry it, it’s against the rules, and so on. He kicks at me (with a brand new shoe, no less) and then tells me he doesn’t care if he scuffs his new shoes. Finally, he takes the backpack from me, flings it at me, I dodge, he mopes to the truck. For me, it ended there…until school is over and I pick him up…but dd still had to take him. He threw a belt at her, sat and cried hysterically in the truck, then yelled at her repeatedly to leave him alone once they were in the gates. So leave him alone, she did. Came home, and so far, no call from the school. I’m not holding my breath though. That kind of anger and aggression usually means some issues throughout the day. His teacher and aide is wonderful in helping with him, but carryover is bound to happen in one form or another. Such is another day, right?

There’s been so much public awareness in the last year, and while I’m all for public education, I’m not sure that it’s making the difference that I’ve hoped for. Am I hoping for too much?

I recently got into a discussion regarding public response and public perception of our kids. I began to hear about situations other families had dealt with while out and about with their autistic child, and I had to stop reading for a few minutes because some of it was just too raw. I like to think that as a community, we’re moving forward, but then I hear these things and wonder, are we really? At what point, if any, will we as parents stop being in the position of having to explain or defend our child, or just learn to ignore the rudeness of strangers?

Don’t get me wrong — overall, this isn’t a dot on my big radar….but maybe it should be? I have many other things to worry about, and I don’t want to spend my time on unnecessary things, but unless our children stay at home all the time, commentary from strangers shouldn’t be something we should have to suffer through whenever we take our child out and he/she has a bad moment.

This past weekend, I took my son to the store and he had a meltdown. I hadn’t taken him shopping in a long time, so I had high hopes that our trip in for two items would be fast, but there were only two checkstands open in this huge store, despite many uniformed employees standing around talking, and we had to wait. That’s the kiss of death. By the time we finally got out of the store, ds was yelling at the top of his lungs to me: he hates me, doesn’t love me, and so forth. People were staring, and as much as I think to myself “just ignore them, they don’t know” I can’t help but notice them. I was trying to get ds to the car as quickly as possible, Starbucks in hand (his Icee, his shopping treat, ha, was being carried by my 13 yod), and ready to throw the tea into the nearest trashcan just to get him to the car, when a couple of things occurred to me: one, that I’m not wasting my Starbucks just because he is having a meltdown, and two, I can’t let him control every outing, even if it’s with negative behavior. (You can see I have a thing for Starbucks, right?) So we trudged onwards…and I turned around and saw a mother and daughter looking at us. I was prepared for the typical “geez, nice kid you got there” comments when she said something I’d never heard before: “I’m sorry he’s saying those things to you,” with a truly sympathetic smile. I was speechless. I have snappy comebacks for those who butt in rudely, but this woman was sincere, and wasn’t the average ignorant nosey person who wanted to mind my business. So I just gave her a quick smile, and continued towards the car. I got home, told dh, and he said “You didn’t need a comeback, she was being nice.” How sad is it that the well-intended comments like hers are so rare, I have nothing to say? I don’t think she expected a response, I clearly had my hands full, but it was so nice to hear something nicer than “shut that kid up” that I felt like I should have acknowledged to her how welcome something not mean is. People just don’t realize the effects of their words, neither positive nor negative.

We are four weeks away from our big family trip. I found our autism pins, and I need to be sure I put one on ds’s shirt before we head for the airport. (Can pins get through airport security checks? Anyone know?) It says something like “I’m not misbehaving. I have autism. Please be nice.” (Not exact wording, but pretty close.) I don’t want some nasty stranger ruining our trip, yet as someone pointed out to me, my son’s issues aren’t necessarily anyone else’s business. I don’t see sick people having to explain why they walk slow, or people in wheelchairs having to apologize for the fact they take up more space..and they shouldn’t have to, so why do we parents of autistic kids have to deal with the nastiness of others?

I’ve pontificated (big word day) on this topic before, and have no real answer. It comes up sporadically, depending on how things are going. My predominant thought is that society today still thinks that it’s their job to mind others’ business under the guise of ‘helping’ them. Yet there’s no real help when they comment on my parenting or my child’s behavior. True help would be asking me if they could carry that bag to the car for me so I can carry my son, or gathering his shoes from various parts of the parking lot so I can leave. True help would be turning away as soon as they see it’s not a mass murderer attacking me. True help is true compassion and understanding, and there’s too little of that today. Instead, there are snide remarks and threats…yet many of them probably go home to unsafely dirty homes, abusive spouses, fridges full of unhealthy food, too much of the bottle, or any number of other things that would make them questionable if someone put them under the spotlight. Just because I’m in public doesn’t mean that my life is public or that my life is open to their prying eyes. Why is that so hard to get people to understand?

I probably should have posted this already, but the whole church restraining order got to me too much. But, now that I’ve ranted, here’s why I haven’t updated recently. I was on a business trip to NYC last week, and I had a blast. (Should I feel guilty? I left dh home with all four kids and all the associated issues, and there was a day I didn’t even call home!)

I was a bit worried about it initially. My husband leaves for work very early, so it would require my older two teens getting the younger two up each morning and out the door. Ds wakes up early, and he is high-maintenance all morning long. Once he’s at school, the coast is clear but if his routine is disturbed on his way out the door, all hell can break loose. I had to leave explicit instructions on things — for example, how to make his lunch. A paper bag with his name on it. Two juice boxes, only of a certain flavor, not the other kinds, leave those for dd. Use four separate baggies, and fill three with snacks of specific varieties, rotating and putting just so much in each. The sandwich is white/wheat bread with a bunch of turkey and mustard, no cheese. Use the Pampered Chef sandwich cutter to cut off the crusts and make it like an Uncrustable. Put one juicebox and all the food in a bag. Fold over three times. Put a staple in each corner, with room in the middle for him to tear the bag open. Phew. And that’s just lunch.

I pre-made his pancakes and cookies before I left, so breakfast is simply re-heating. Cut them before you put on syrup, stacked perfectly together. His “coffee” (chocolate almond milk) must be in a certain cup at the same time.

Dh picked him up from school daily, and they had fun evenings — ds got homework done early in the week, and they played Guitar Hero a lot, played tetherball, and things went well. He did try to escape his therapy on Tuesday, and Friday was rough, resulting in him breaking a special ceramic box his sister had made him (painted with puzzle pieces and an autism ribbon) a couple of years ago, which I’m sure hurt her feelings. He loved that box, so I know he had to be pretty mad for that to happen. I woke him up Friday night when I returned, and though he was half-asleep, he smiled so big, it was definitely worth it.

The weekend went well, and he’s been oh so compliant, it’s almost scary. His attention span is still short, but when he finds something he really wants to do, he can focus for a longer period of time. He’s fascinated with building block towers and playing with rubber bugs lately, and I am SO thrilled. Anything new, anything with imagination, I’ll gladly step over piles of toys all over my house. Gladly. That giggle? Best sound in the world, ever.

Has St. Joseph’s catholic church in Bertha, Minn. read that part of the bible? “Let the little children come to me, and do not hinder them..” Anyone at St. Joseph’s familiar with this bible verse? Or the Catholic credo that you are supposed to come to mass? Oh, I get it — more mandates by humans, “Go to church, just not MY church.”

It’s a sad day in the autism community, or any community, when you can be kicked out of church for a disability. I thought that was illegal? Maybe I don’t know my ADA regulations well enough, or maybe the church doesn’t, but so far, they appear to be getting away with it.

A church is place people go to help grow their faith. Sure, we can read our bibles at home but we can’t minister to ourselves the way a priest/pastor can. This family, just like everyone else and maybe moreso, deserves the comfort and ministry of a church, yet they are being denied it because their son’s severe autism behaviors are just too much for the church to handle. One blog I read said that the boy, a 13 year old boy but still a child, has urinary incontinence. It also said that he ran out of church so quickly one day that he knocked an elderly person over. (Wow, maybe no children should be allowed in church then — I see neurotypical children barreling into people left and right every Sunday.) I also read somewhere that the boy flails his arms and legs, and this was deemed dangerous, and that he spits, though the family supposedly said that part isn’t true. In the end, I don’t know the real story — I don’t know what he does, and what he doesn’t do, but I can clearly see what the church didn’t do, and that’s help this family. Maybe they really did offer a different place in church for him to hear the sermon, maybe not, and maybe the place they offered was unsatisfactory. Who knows. But in the end, a church got a restraining order to keep a severely disabled 13 year old boy out. Does that not give everyone pause? If not, it should!

Discriminating is illegal. Sure, keeping other parishioners safe is definitely a job of the church but there has to be a middle ground here. I have so many thoughts on this, I can’t cover them all without rambling but I want to know why major autism groups aren’t behind this family. Where is the ACLU or a famous attorney when it comes to a disabled white boy? Where is the press, and why aren’t they up in arms? Why aren’t all of us?

I know, truly, that there is another side to this story. But I also know that even in the most accepting of churches, in the kindliest of congregations, even a ‘high functioning’ autistic child can not always be treated as he should. And these are children we’re talking about, children of families who are using their faith to get through a tribulation. Needy families. Disabled people. Shutting doors to them can’t be how churches are supposed to act. I don’t know what else to say, but I hope that this church and those who complained about the boy are ashamed of themselves.

We spent yesterday evening at Disneyland — got there at 4pm, and were into California Adventure by 4:15pm, and on Tower of Terror, special guest assistance pass in hand, by 4:30. We were moving! (Not that I want to add to my quick lines, but getting the pass in Cal Adventure is much faster than Disney itself, as the line is always shorter. It’s directly to the left when you walk in, at guest services.) Since we always keep our old pass, we just show them and ask for renewal each time, updating the number of people in our party, though they do often ask to see ds, which is no problem. He’s usually so excited to be there, you can hear him a mile away.

After Tower of Terror, ds’s favorite ride by far, we left Cal Adventure, just missing the new Prince Caspian parade. It sounds really cute, but ds only likes parades from afar, for a few minutes, so it’s much easier to get away from those crowds and enjoy the shorter lines elsewhere. Off to Disneyland right away, where we headed straight for Space Mountain and then pizza. My apologies to the sweeper in the area of the Pizza Port; that was my ds throwing small sections of crust down to the birds, though I do think you could have stopped hovering behind the pole and let the birds take it before you swept it up each time. A few rides later, then an ice cream stop (“Yay! Ice cream.” Ten bites into it “I’m full!” so he tries to hit his stomach to make room…honey, that will just hurt…trust me.) A quick wait in line at Splash Mountain, where we found out that children under 60″ are no longer allowed in the front seat. Yay, finally, it always freaked me out. However, that left dh stuck in the front seat — 200 lbs. in the front and a high water level=getting soaked. But, I’d warned him it was late for a water ride, and he insisted we still do it, so laughter replaced my sympathy. Ahem. Sorry, Honey. 😉

Close to 8pm now, so we headed to Indiana Jones, now that ds is finally tall enough. We made it all the way to the stairs next to the loading platform, and the ride stopped. Cue the impending moans and meltdown. A compassionate ride staffer (I’m sure there’s a better word for her, but I can’t think of it right now) listened to my plea for help with a special needs child and a guest assistance pass stuck on the stairs, crowded and really bugged by it all, and maybe worse, having to go potty. She let us use the employee restroom, and promised us quick loading if the ride came back up…but it didn’t, so we and every other person in line headed for the exit en masse. I’m not claustrophobic in the traditional sense, but standing with what seemed like hundreds of other irritated people inside cave-like walkways was uncomfortable. Why is there a wait to GET OUT? Turns out they were giving out fast passes, yet we have the guest pass so we passed up the offer (sorry for the pun) and headed for the exit. Apparently, not only does Disneyland cut back on staffed rides during their weeknights (only one elevator per floor in Tower of Terror, only one side of Matterhorn open, etc.) but they can only afford to staff one exit gate for everyone at closing time. If I could talk to Disneyland, I’d let them know how much we truly appreciate the guest assistance pass, which is a lifesaver — we couldn’t do Disney without it — but open up the staffing again so more rides are open (slower nights should mean less wait for rides, yes?) and open up more exit gates, especially towards the side where you actually meet the tram.

We love Disneyland. My kids love it. It is not the happiest place on earth though. My heart went out to a family I saw when we literally ran into Goofy on Main Street. Three boys ran to Goofy, got their pictures taken by parents who can’t snap fast enough since there were tons of others waiting, and then my kids ran to Goofy, got a high five, and we turned to leave. Then an older boy, probably mid-teens, ran to Goofy, begging him to wait. I don’t know what the politically correct word for him was, as it seems to change daily and different parents have different words depending on their views (autistic? person with autism? just one example) but this boy was clearly challenged..and obviously so. However, that didn’t stop some other mom from frowning and shaking her head. Those are the times I want to really ask her what she’s doing at Disneyland, a child’s playground for the most part, if she can’t tolerate kids being kids…and to open her heart, and have some compassion. The boy/young man didn’t want to be left out, yet due to his size, he probably was. I wanted to hug him, then hug his mom, but I never saw her in the crowd of cameras trying to be sure their child was next, to heck with a line. Times like that make me sad that society is so harsh, and selfishness abounds.

Then comes the best ride of the day…the tram ride. Pushing and crowding to get on, and kudos <not> to the lady who sat with us, the lady who decided that she needed that last smoke (in a non-smoking area, on a non-smoking ride) more than my kids needed clean air. Like they don’t have enough issues. And then she couldn’t even apologize for rubbing her cigarette on the seat as she sat down, spraying both my kids with red ashes. That’s okay though, when I said “Dumb place to sneak a cigarette,” at least she didn’t argue.

All in all, a really good visit to Disneyland, though only four hours. It’s longer than other visits though, some where we’ve made it as far as Main Street before ds decides he wants to go home. Sometimes it’s because he’s had a potty accident and doesn’t want to tell me…others it’s because they don’t sell his particular liquid of choice (lemonade — it’s there, just not all over)…others, it’s just too loud and he’s done with lines after just waiting to get on the tram. The closest we had to a meltdown last night was when we refused him root beer when we found the only brand they sell contains caffeine, a no-no for both him and my daughter with seizure disorder. By the end of the evening, he was running off and not listening, in his own world yet happy about it, completely overstimulated. Getting him calm for the hour ride home was iffy in the beginning, but he eventually pulled out his DS and played. And we didn’t have to stop to potty all the way home!

If you get the chance, don’t let the idea of a Disneyland visit intimidate you. Talk to Guest Services, and get their help. They are truly the only park I go to anymore that allows 100% help for our kids when it comes to lines for rides, shows, characters, etc. And we’ve tried many, only to completely cross Knott’s Berry Farm and Six Flags off our list, as they don’t accommodate autism — “We wouldn’t want to upset our non-disabled guests” by basically allowing those of us with disabled children to “abuse” the system. What crap. Sea World is good, too, though you still have to wait in show lines and get no real help there.

Go Disney!

 


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