Sumer Camp FAIL

Heavy sigh.

Back in May, I got a heads up from Eli's aide and teachers about what seemed like a really great opportunity. Japan Art Camp held at the local University. Eli has fixated on Japan and China for the past several months, and I jumped at the chance. The camp runs for one week, from 1:00-4:30 in the afternoon. Before I officially signed him up, I spoke personally with the director of the camp. I wanted to make sure Eli would be welcome, and I also wanted to make sure that they could accommodate his needs if necessary.

I told her that he is verbal, functions fairly well, and is fascinated with Japan. We decided to give it a shot and I signed him up early, as space was limited in the program. Eli was completely thrilled about it. Yesterday was the first day of camp and I walked him in, helped him remove his shoes and stow them in a cubby, and got him settled in. He was slightly apprehensive on the drive to campus, but it quickly turned to excitement when we were walking up to the facility.

I waited for a few minutes before I left, assuring the assistant director that if any problem arose, I was a short drive away. I waited. And waited. No phone call, so I assumed it was going well. At 4:30, Jim and I picked him up. The assistant director told me that he had done very well, but had seemed ready to go a little early, and would I please talk to him about being quieter during the tea ceremony. No problem, I talked to him about it both last night and today, and he promised to be more quiet and respectful. He also had a flower arrangement to bring home, which he was pretty proud of.

Today, however, was a different story. I dropped him off at 1:00, helping him once again get settled in, reminding him to be quiet and respectful. At 2:35 I received a phone call saying Eli was not having the best time, could I please come.

I hauled ass across town, wondering what was going on. I got there, and the assistant director showed me to a small room off the hallway where one of the young people helping was sitting quietly with Eli. Eli by this time was completely calm, having a bottle of water and talking normally. The guy helping him was nice, but he said that the sensai was upset that Eli was taking so much of his attention, and wanted him to spend time with the other kids. Fine, I totally get that. Then he suggested that perhaps just a tour of the facilities might be more appropriate; that Eli might be able to handle that better. A tour? Really?

I asked him what had gotten Eli so upset. The kids were working on a project painting characters for a "scroll" and he had gotten bored, so he quit working on it.
When the sensai came around to look at the kids' scrolls, Eli was upset that his was so incomplete, and he said he would rather have the nice one from Japan that was on display on the wall. No, duh, who wouldn't want that one instead? At that point, apparently, all hell broke loose and Eli started crying.

I took Eli up front to put his shoes on and get him out of there. Tears were stinging my eyes with the frustration of my child once again being excluded. The assistant director stood nearby and when I had finished getting him ready to go, she tried to talk to me, but I really wasn't in a mood to talk. I shared with her my frustration about my son being excluded and the lack of ANY decent programs for kids like him. At that point, she mentioned Larkin's Place, which is a yet to be built inclusive play place for kids with disabilities. At that point, I snapped. I told her that Larkin's Place is years away from completion, and that wasn't really helping my child right now.

I drove home barely containing myself. Jim was home when I got here, and I fell apart. I am so freaking sick of my son being excluded.

I open my email and there is a note from the assistant director of the program apologizing for saying exactly all the wrong things to me. She also said that they would really like to make the program work for Eli. I don't know what to do. I feel so crappy about the whole experience right now. Plus, if I were to take him back tomorrow, I would hold my breath the whole time, waiting for that phone call telling me to come and get him early. So what do I do? Do I take him back, fully aware that another episode could send him right back home, making him feel left out? Should I take that chance?

Spring is here and everything is growing!

It is Spring here at the Mothership and the flowers are blooming, the bees are buzzing and Eli is growing.

He had a homework assignment last week that was interesting. Along with the usual math worksheets and reading, the teacher had asked the children to choose one spot of their home to organize. Really. They've been taking care to keep their desks and area tidy at school and this was supposed to help them carry that skill home.

We chose his dresser to organize. It's tiny, the one he's had since infancy, and doesn't hold much in the first place. The bottom drawer has always held shirts and it has consistently fallen apart, so we asked Jim to help with that repair. Socks, underwear and swimming trunks are in the top drawer, with pants and shorts in the middle. Yep, a tiny little three drawer dresser.

Eli was acting silly through most of the organizing, but he did help. He told me which shirts he doesn't wear anymore, which are too small, and which ones he just plain does not like. The adorable orange striped polo shirt was tossed in the giveaway pile just because of the buttons at the top. Shoot. He looked cute in it, but wouldn't wear it, so we got rid of it. The shorts and pants were pretty quick to go through, and we found a number of Legos and toys in the underwear drawer that needed put away, but it went fast! I was amazed at how much he has grown physically in the past year, some of those pants were so short.

This is pretty mundane, and it seems kind of goofy to share it, but the point is that he is really becoming more responsible and independent all the time. His aide at school has noticed it, too. She writes notes each day, sometimes short and sometimes pretty extensive. Yesterday she wrote a LOT about how independent he has become just in the past few months. As I picked him up after school, she joked that "He doesn't need me at all anymore! He checks himself out, checks himself in, does his work--I'm going to be out of a job soon!"

What she was referring to--the check-in and check-out procedures, this is how we track his daily progress with mundane things. Things that we just expect a typical child to do on its own, but which an autistic kid needs help with dozens, even hundreds of times, before they finally get it. Each morning he checks in, puts his stuff away, and gets scored on how well he does transitioning from home to school. The staff may note that he was pokey or grumpy at the time. He has needed assistance with the procedure until now, but now he does it all on his own. Same deal with the check-out at the end of the day. He gets scored throughout the day and then at the end takes the score sheet to the school social worker so that she can total his points to see if he made his goal. His goal each day is a score of 80, which he easily makes most every day.

The first time his aide tried to allow Eli to check out on his own, it did not go well. A few weeks ago, she was visibly upset as she walked him out. He was fine, but here's what happened. He was supposed to take his goals sheet to the social worker's office for the tally, but somehow got on autopilot and took his backpack out to the playground. Soon as he got outside he realized his mistake and tried to get back into the school, but the doors lock automatically. He was stuck.

He panicked. He started pounding on the playground door, trying to get in. He started screaming. About that time, the social worker buzzed the intercom for the classroom, letting the aide know that Eli had not made it to her office yet. They found him quickly, hysterically crying and completely freaked out. He was afraid he was going to be in trouble.

He was not in trouble, obviously. They were scared as was he, but this is not a big deal, to me. To be honest, I think the aide was scared that I was going to go all batshit crazy on her for allowing him outside alone. I did not. Why would I? He was fine, had realized his mistake and tried to get back in. That was the right thing to do! I assured her it was no big deal, said to try again until he got it right, maybe shadowing him a couple of times until he got the hang of it.

He got it. He goes by himself now. He is independent. It took dozens of times of repeating the same procedure, but he really did get it.

I remember years ago reading something about Lovaas and although I really disagree with a lot of what he had to say regarding autistic people, I agreed with one portion of his interview. The interview can be found here, and if you read it, you'll see why I don't like a lot of what he had to say. But here is the part that stuck with me, and I live by these words at times.

Normal kids give you too much for free. They really do. What you can do with a normal child is no test of psychology or of parents. It is only when you run into an autistic child where things don't happen that you really find out what you know about human behavior. When language doesn't develop, it forces you to identify just what goes into the development of language. When kids don't develop warmth for other human beings, it forces you to find out just how emotions are acquired.

Pretty much on target, really. I prefer the term "typical" to "normal" but you get the idea. I've said before that Eli showed up and changed all the rules on me, just when I had gotten that parenting thing all figured out. He didn't talk on time, walk on time, or potty-train according to the usual time tables for milestones. It took a lot of extra time and repetitions before he got it. But he did get it. It just took longer. I can wait. I have oodles of time.

Autism Awareness--for everyone

That right there, that adorable little face trying hard not to smile with a mouthful of bubble gum, showing off his stylin' new haircut, is the face of Autism. He doesn't look autistic at all, because there is not a way for autism to look. It manifests itself behaviorally, not physically, so autism is hard to see. Sometimes people don't see it when it's pretty obvious but it's there if you know what you are seeing.


It was tough for me to read a blog with so much self-righteousness injected at each and every opportunity, but I had to do it. I had to go and read what was meant to be a humorous venting session by a shrew of a woman who calls herself, of all things, Smockity Frocks. I'll not be providing a link to her actual blog, for two reasons. One, us bloggers are proud folk, and many of us track visitors with counters, either hidden or visible. I would hate for Smockity to assume that people are going to read her blog because it's good. Two, I really don't give a shit what Smockity has to say on any matter after reading a Google cached copy of a sample of her work.

Here's the link to the cached version of her blog from earlier this week, which has caused such an uproar (a reasonable uproar, carefully contained) by autism bloggers around the country. Please give it a read before you continue onward here. I'll wait.

......................................


Okay. So maybe I'm being uncharitable to Smockity. I doubt it. She sounds like one of the know-it-all moms who feels that if she raised everyone else's children, they'd all be perfect. You know the type. It's VERY difficult for me to not attack the person in this instance, but to challenge only her ideas. I could fill two or three pages with sick hatred toward this woman. But that's not going to help. She had a chance to apologize to autism moms after numerous "faithful readers" tentatively mentioned that the child in the library was probably autistic, and that the child's grandmother was probably doing the best she could under the circumstances. Did she apologize? Nope. She got defensive. She got angry. She got upset that people called her on it, took down the blog, and went to her room to pout. (I'm guessing on the pouting, the other stuff is verifiable.)

I'll be trying to use my powers for good, not evil. Here we go. April is Autism Awareness month and Smockity's blog was like a sledgehammer--showing us that the general population may have no idea what autism looks like, let alone some of the coping skills that autistics utilize to make their way in a fairly hostile world. The little girl in the library's tippy-toe walking and hand-flapping, her repetitive speech, her "stims" as we call them, they were like a big blinking red light to me. Before Smocky even began her tirade, I knew this little girl was most likely autistic. My heart sank as I read on, with Smocky's mocking of the girl and her grandmother getting meaner and meaner with each line. Is this what people think of my son? Do they make fun of his actions? His speech? His unbelievable challenges?

I'll begin by saying that most autism moms know how I feel. We do our absolute best and sometimes get through the most humbling and humiliating experience only to collapse in a sobbing mess once we make it back to the car with an autistic child in full-blown meltdown. I've been there, more times than I care to remember. These are not just tantrums, people. I have seen my share of tantrums, having parented several children before my Eli showed up. Sam in particular threw some pretty impressive tantrums as a three year old. Eli's meltdowns put Sam's tantrums to shame. Screaming and throwing oneself on the floor for a few minutes over not getting a popsicle in no way compares to a meltdown of Eli's epic proportions. He banged his head on any available surface, often until he had lumps and bruises. The floor, a wall, a door, didn't matter. So long as it was a solid surface he would headbang. It was one of the very first signs that I was not dealing with a typical child.

I have little experience with other autistic children, although I do know several. So what I will do here is relay some of things my own son has done to display his autism, if someone knows what to look for. Ready?
Headbanging! No, not the heavy metal version. The real version. Frustration was almost always the trigger for it in my kid's case. He was a serious headbanger until he finally started talking around age 4. He had some speech before that age, but it was fairly limited and extremely repetitive, or what is called in the autism world, echolalic.
Echolalia! Repetition of a phrase or a word over and over and over and over..... Again, stress was the usual trigger. We would be alone in the family van, cruising around town to pick up older siblings from school and activities with Eli alternately sobbing, screaming or saying, "Car" or "No car" literally hundreds of times. Seriously. "Car" was the word he used for anything with wheels on it, "No car" was anything without wheels.
Fixations!! Lots of them. His focus level is intense, and very narrow. Once he gets an idea in his head, it stays there---for as long as it takes. Redirecting is a great tool, but it doesn't always work and it's not always an option.
Meltdowns! Oh joy. Like a tantrum, only worse. Eli's meltdowns could last for hours. There was absolutely no getting through to him when he was/is in a meltdown. There is typically screaming, body rigidity that would impress a body-builder in its resolve and strength, attempts at hitting, kicking, biting and hair-pulling for anyone trying to intervene.
Hand-flapping! I remember when Eli was just in the process of being diagnosed with autism and reading about it, thinking, "Well, there's ONE sign he does not display!" only to see it show up a little later. He still hand-flaps at times, mostly when he is excited or happy, just as the little girl in Smocky's blog did. What is hand-flapping, anyway? The best way to visualize it is by doing it. Put one or both of your hands up near your face, and flap, very fast. Touch your cheek or chin occasionally, as a way to gauge how close your hands are. Now flap again, faster! A friend with an older autistic son said she called it "Happy hands" when her son did it, and she was a little wistful for it when he outgrew it. I've a sweet phone video of Eli waiting on the little yellow school bus as a 5 year old, so excited and happy about his new school, flapping away.

These are just a few of things my own son did. There are other obvious signs that something may be amiss, neurologically speaking. For example:
Toe-walking! This is when a child walks on tippy toes most if not all the time. No one really knows why. They just do it. Very common in autistic kids.
Lining up toys! Obsessively. Eli would line up dozens of Hot Wheels on the floor very carefully and freak out if anyone moved even one of them.
Looking at things sideways or from different angles! After he'd lined up the cars, he'd lay flat out on the floor with his head turned to the wheels of a car and very slowly roll it back and forth watching the wheels spin. For HOURS.
Not looking someone in the eye! Many kids are shy, not just autistic kids. Eye contact is a huge bugaboo for autistic people. It can be very painful for someone to maintain gaze with someone, to the point that they cannot do it for more than a few seconds before they have to look away. So if you want to tell an autistic kid to "Look at me when I'm talking to you!" you may want to rethink your strategy.
Smearing their poop! Oh gross. Yeah, I went there. Eli did this for two years, every night without fail. I got REALLY good at getting rid of poop smell. Most autistic kids that do this will stop over time. It is thought to be a sensory issue by most parents who've experienced it.
More sensory stuff! Crowds of people, bright lights, loud and/or unexpected noises, tags on clothes, seams in socks, textures of foods. Any and all of these situations can cause overload in autistic kids. Eli was allowed to wear a baseball cap and sunglasses on the school bus when he was smaller and couldn't take the slanting morning sun. He's just now learning to appreciate music yet he is a complete carnival ride addict. The input is favorable from the ride, physically and the input from bright lights and loud music unfavorable.

Obviously, Eli has progressed quite a bit over the past few years. It's truly a labor of love for his therapists, his staff at school, and his friends and family. He no longer smears poop, headbangs, lines stuff up, etc. A lot of the really serious symptoms have faded and gone away. And over the years, I have learned to cope with some of his unique challenges and honestly, I don't care what most people think of my abilities as a parent. That's actually a victory in itself--knowing that what other people think doesn't matter. But when it turns ugly, like Smockity mocking the little girl who so obviously had something other than brattiness going on, I do care. Because it matters what people think of our children. Our kids are not going anywhere. The vast majority of children diagnosed with autism will NOT be hidden away or institutionalized like in the bad old days. The sooner the general public can recognize, accept, and respect our kids, the better for all of us--not just our kids.


As I said earlier, I have a lot of experience with Eli, but every autistic child is different. Some kids never head-bang. Some don't line stuff up. It's up to us as compassionate people to not judge a fellow parent harshly on their parenting abilities when we see what we assume to be tantrum, brattiness or odd behavior. For everyone sake, try to take a step back, no matter the situation, and reserve your judgment, be a good person, and if the mom has other small children or seems truly overwhelmed, offer to help. Show a little tenderness, a little compassion.

And as an added bonus, please read the following link to get an idea of what Autism really is and how it may affect a child.

The Great Equalizer

No, I am not talking about Health Care Reform.

I'm talking about video games. Specifically, Nintendo DS.

The family was invited to an evening with friends this past Friday night. We readily accept invitations to just about any gathering. We don't hide in our home and moan about how autism has killed our social life. We get out there. Frequently. Most of the time, Eli does just fine and if he has a problem, we either leave or take a little break to let him regroup. At any rate, he adores the family that was hosting the gathering, so it was a safe bet.

We arrived around dinner time with promises of baked ham and potatoes. Mmmmmm. Ham. Shortly after our arrival, another friend of the host showed up with her 9 year old son. At our urging, the host's son, who is 14, was instructed to take the boys downstairs to play the Wii. Ooooh, maybe not such a great idea. We do have a Wii at home, and Eli has had a bit of experience at school with his lunch buddy/mentor Wii bowling and such, but I had reservations. I asked the older boy to help Eli with the controller if he needed it, since they were Mario Kart Racing, not bowling. Totally different controllers and commands.

It ended as I had feared, with Eli frustrated that no one was letting him win. Well, duh. Kids are competitive and I explained, once again, that everyone wants to win. He cried a little out of frustration, announced that he hated the game, and didn't want to play. Okay, that's cool. He didn't have to play the Wii. He curled up on the couch with his DS to play Kirby. Not just any Kirby, mind you. Kirby Superstar Ultra, in Japanese. He had the English version, but has developed an obsession with anything Asian in the past few months. He had pestered me for about a month asking about the "Japanese section of Kirby" and I had no clue what he was talking about. Turned out he was mixing up the words version and section. He had seen a youtube clip of the game with Japanese language rather than English. Soon as I Googled it and found it, he started jumping up and down, yelling, "That's it! I told you!" Ahhhh, now I got it!

Just in case anyone out there is interested, I'd be quick to endorse the site Yesasia.com for all your Asian language media needs. They were not much more costly than English language and shipped promptly. We were given a tentative arrival date of March 4, and the game arrived a full ten days early. Nice surprise!

But back to the gathering, because this is really good.

We sat down to dinner and he ate everything, including salad that he chose to garnish with orange and yellow bell peppers and cucumbers, which surprised me, but he ate it. He ate tons of ham and a whole baked potato, asking if could "Hook me up with another one of those potatoes, Mom!" Gladly! I was really proud of him, since it used to be nearly impossible to get him to eat anything at all.

After food, the grownups sat in the living room and the two younger boys were there, but not really involved with one another. I couldn't blame the 9 year old, as Eli had lost control earlier. Hell, even adults have a hard time dealing with it, and the little boy's mom had not known to prepare her son for an autistic kid. Totally understandable, and not a big deal. So both boys settled in with DS in hand, each playing their own games.

Fast forward to a short time later. 9 year old was playing Super Mario Brothers. He'd glanced at Eli's Kirby game, fairly unimpressed with the Japanese aspect. 9 year old hit a level that he was struggling with and asked his mom if she could do the level for him. She gave it a shot, with Eli by then hanging over her shoulder saying, "You're doing it wrong." So much for tact! She gave it a couple of tries, and the whole time, Eli was saying, "I can do that level for you, I've finished it lots of times." 9 year old looked pretty unconvinced. Can't blame him, either. I mean, Eli had thrown a pretty impressive fit earlier, right? But he persisted, in his charming little autistic way, saying over and over that he could do that level. At one point, 9 year old said to Eli, "I KNOW how to do this level" and Eli says back, ever so nicely, "Have you finished it? Because I have!"

Finally, 9 year old's mom said, "Let him try it. I can't do it." and handed the game to Eli. He started through it, and both mom and 9 year old were watching closely. She said a couple of times, "How did you do that?! I didn't know you could do that!" when Eli was working through it. Did he succeed? You bet! He finished it, and wanted to do the next level. At that point, 9 year old wanted his game back, and said he could do that level so Eli gave it back, nicely. 9 year old worked through the level, then hit another he could not finish. He handed the game back to Eli and said, "Here. YOU do it." And Eli did. As he finished, he told 9 year old, "I can help you with any levels you can't do. I finished this game already. I can help you."

My point, and I do have one, is this. Our kids can shine as brightly as the next kid, given half a chance. It was nice to see the 9 year old grasp that Eli could be better than he was at something, and not be bothered by it. And equally, it was nice that Eli was not showing off, or trying to make someone feel badly, he was trying to help, and he did.

Goobers has retired

Goobers is Eli's baby quilt. It began as a beautiful little quilt stitched together with love by his oldest sister and one of her best friends. Her friend's mom finished it, being a seamstress extraordinaire, with a silky edge in rainbow colors. For the past 8 years, the quilt has been a constant source of security for Eli, going with him on various trips, car rides, and adventures.

It became Goobers after Eli watched the Sponge Bob Squarepants movie a few years ago. No idea why he picked that name, but Goobers it was. The family would sometimes have to have an all-house search for Goobers when it was bedtime. Many tears were shed over Goobers' mysterious hiding places: under the couch, in his sister's room, on the front porch. I sometimes swore he (Goobers gained a gender with his name) did it on purpose just to torture us.

Since Eli's dad and I are split, Goobers has traveled between houses. There was one frantic night when the blanket was left at dad's house and he had to bring it over, ASAP. The things we do for love....

But last week, Eli was looking at Goobers with a critical 8 year old eye. He told me that Goobers was getting pretty old and beat up. That's an understatement! Thousands of wash and dry cycles after his creation, Goobers had transformed from a beautiful little quilt into a rag with a silky rainbow edge. "We need to put Goobers away. He's tired."

I was skeptical. Was it really just that easy? Just put him away? Yep, it was really just that easy. I stowed Goobers in his dresser and told him if he ever wants Goobers again, he's right there waiting for him. I was never one to take my kids' loveys away from them before they wanted to part with them. I guess, in a way, I was more sad to see Goobers go than Eli was.

He's growing up. There. I said it. Lately, he doesn't want me calling him Sugar, or Sweetie, or any other names but Eli. Furthermore, I am forbidden to kiss him. "That's for babies, mom. I'm BORED with kisses." Heavy sigh.

He's my last baby. I remember my older sons going through a similar stage when they were about his age so I shouldn't be surprised, but it's still bittersweet for me. He really is growing up, and I can't stop it. Don't get me wrong, I'm glad he's making such great strides with maturation. But it comes with a price.

I know where Goobers is. He's taking a much-deserved rest and I am so proud of Eli for taking the initiative, for being secure enough to give him that rest. I see him when I put clothes away and I smile, thinking how much that little patch of ragged cloth has meant to my son for all these years.

And for the record, I do still give him kisses. I sneak in after he's fallen asleep and steal them. Wouldn't you?

A Shot in the Dark

Good grief when will this end?


I wandered on over to a forum to read. I can read, but if I post, then I get sucked into it all over again.


The forum is pretty dead, except for one section. Diet and Biomedical treatments for autism. Strangely, there are a lot of postings about chelation, which is neither dietary nor biomedical. Why are people still doing this to their autistic kids? Do they not understand that chelation is NOT a cure for autism? Guess not, because they are still doing it, sometimes for years on end. Here's a thought--if you've chelated a kid for years, it might be time to give up that ghost.



Chelation can happen in several ways. But I am getting ahead of myself here. What exactly IS chelation? In layman's terms, it's a chemical treatment to rid the body of harmful heavy metals, developed to remove lead from soldiers and sailors who were exposed to high levels of lead, and later, mercury and arsenic. Sounds reasonable, right? Patients were diagnosed with heavy metal poisoning, given treatment, and that was the end of it. The treatments did not span years or decades. You can read more about chelation here at Wikipedia.



Why are parents of autistic kids treating their kids with chelation? Well....I don't know. The simple answer is that the parents are desperate. Desperate to cure their child of his or her autism. They've been misinformed that their children are poisoned via childhood vaccines, and they've bought it hook, line and sinker. Hey, I am not judging here. I've been desperate myself a few times. But there are many studies refuting the vaccine-autism link. I tend to err on the side of caution and I am not about to subject my autistic child to a potentially deadly procedure to cure him of his autism. More importantly, I am not about to torment and torture my child.



The following are posts on a public autism support forum. I've changed the names of the people posting, but the posts are directly copied from the forum.



Question for anyone who is doing or has done suppositories



Poster #1: We have just started to do EDTA supp. our DAN just told me to keep minerals 6 hours away from the supp. He also had us add Selenium to our protocall. My question is I give it at night right before he is about to fall asleep. Is that when you give it and is there anything else I should be doing? I want to make sure I am doing it right.

TIA



Poster #2: good questions.. we will probably be starting DMSA suppositories soon..



Poster #3:

We weren't told to separate the suppository from any minerals.
We do the suppositories at night. I find the whole process goes a lot faster when my child is asleep or nearly asleep. Also, make sure the child has had a BM first.

Poster #2: XXXX, it doesnt wake your child up?



Poster #4: administer glycerine supp a few hours before bed, they'll poop, then give chelator when child is fast asleep



Poster #2: thanks XXXX.. I just worry that if I do it while hes asleep that he may be scared to go to sleep after that lol


Poster #4: doubtful...Get your husband to wrestle with child while you insert supp.


Now, my DS knows all about supps. Sometimes it's a chore, but I cannot stand seeing that belly when he hasn't pooped so in it goes.



Poster #3: Oh she wakes up but she's so groggy she falls asleep right afterwards.


-----------------------------------------------------------------------------------------------

Here's the part that got to me:
Get your husband to wrestle with child while you insert supp.

WTF. I mean, really. So it's okay to wrestle with a child while you are shoving something up his butt. Something that does not even work. Chelation will not bring back the child you never had--the one without autism.


Let me get this straight. This kid is being given two suppositories--one to empty his bowels, which is most likely NOT medically indicated, and one to remove heavy metals from the child's system, which is also NOT medically indicated. And it's OKAY to wrestle with the child while shoving a suppository in.



This is not new. The first time I read about chelating suppositories on that forum was years ago, and the typical approach is to wait until the child is alseep, then sneak in the child's room and attempt to insert a suppository, all while the child is asleep. Poster #2 hit the nail on the head when he/she worried about the child being afraid of going to sleep after that. No really. You think? If I woke up to someone shoving something in my butt, I'd be afraid to go sleep too! Years ago a young and very misguided mother wrote on the forum about how her son would actually go to sleep with his hands over his butt. He got wise to the night raids and made an attempt to protect himself.



I apologize for the repeated visuals and use of the words "shove" and "butt" in this post but for crying out loud, this is not necessary! It is not helping!



Many parents report huge "gains" from their autistic child after rounds of chelation. Thing is, most parents see the same "gains" from their autistic children regardless of treatment. Autism causes developmental delays, not a developmental halt. So kids will improve with time and maturity, as well as with many PROVEN therapies. Some kids will improve dramatically for a time, then lag a bit. And hey, that's kinda normal, right? Even typical kids seem to develop in waves, correct?



Again, suppository is just one form of chelation therapy. There are transdermal patches, oral medication, and IV treatments. An autistic child died receiving IV chelation treatment a few years back, but it's not stopped parents from trying it on their own kids. These are the same parents who claim that vaccines have caused their child's autism, and here are the side effects of chelation, again from Wikipedia.

There is a low occurrence of side effects when chelation is used at the dose and infusion rates approved by the U.S. FDA as a treatment for heavy metal poisoning. A burning sensation at the site of delivery into the vein is common. Other side effects include fever, headache, nausea, stomach upset, vomiting, convulsions, bone marrow depression (dropping blood cell counts), a drop in blood pressure, cardiac arrhythmias, respiratory arrest, and hypocalcemia. Other concerns include kidney failure, which can require permanent life-limiting and expensive dialysis, or cause death.

2007 research with lab rats indicates giving chelating agent DMSA to rats without high levels of lead may cause lasting cognitive damage.

When EDTA is not administered by a health professional for the treatment of heavy metal poisoning more serious side effects can occur.

Chelation therapy can be hazardous, even conducted with the FDA-approved chelation agents. In August 2005, botched chelation therapy conducted by an ACAM member killed a 5-year-old autistic boy; a 3-year-old nonautistic girl died in February 2005, and a nonautistic adult died in August 2003. These deaths were due to cardiac arrest caused by hypocalcemia during chelation therapy. Only the 3-year-old girl had been medically assessed and found to have an elevated blood lead level and resulting low iron levels and anemia, a proper medical cause for chelation therapy to be conducted.

More than 30 deaths have been recorded in association with IV-administered disodium EDTA since the 1970s.

Wowzers. So it's okay to treat an autistic child with chelation? NO. It is not. Check this out, just in case you missed it.

2007 research with lab rats indicates giving chelating agent DMSA to rats without high levels of lead may cause lasting cognitive damage.

Cognitive damage may be caused if the child does not have high levels of lead but they are chelated. And is lead in childhood vaccines? Nope. Is it possible to cause cognitive damage with chelation? Yes.

When EDTA is not administered by a health professional for the treatment of heavy metal poisoning more serious side effects can occur.

Well that's lovely. What you see on the forums all the time are parents acting like doctors, telling other parents what to use, how much, and how to trick insurance companies into paying for it. Really. They will tell each other which codes to use because the treatment is not paid for otherwise. Because it is not medically indicated.

But it's okay, because so many parents do it, right? Wrong. It's not okay. Autistic individuals should not be used as guinea pigs. Chelation is not a valid therapy for autism.

It horrifies me to imagine being a child asleep in my bed, dreaming sweet dreams, and waking to find that my mom or dad has entered my room, my bed, and finally, my person. Sleep should be sacred. And if your kid has resorted to falling asleep with his hands protecting his butt, it might be time to reevaluate your priorities.

Can you hear me now? Good.

Sometimes you have to be a total jerk to get things done. Now is that time.

My autistic son has been in public school since he was 3 years, 1 week old. Yep. He started preschool a week after his third birthday and has been in the same district since the beginning. What this means is that he has had no less than 6 IEPs since he began, but really, there are more than that since we have frequent reviews.

On the IEP, there is a space for Parental Concerns. For the past six years, I have duly noted my own concerns about my son. In the beginning, there were many concerns--academic progression being one of them. However, the one thing that has remained consistent over all this time has been my concern with socialization. I want Eli to be as successful as he can possibly be in all areas, no surprise there, but the academics are pretty solid. So as time has passed, my concerns have shifted to only social ones.

I'm a pretty patient person. I realize that many educators, along with parents, are still learning about autism and how it affects an individual in ability to hold conversations, pick up cues from others, and how well they can function in society, which for an 8 year old child means school. So for the past few years, while I have noted my concerns about social awareness, coaching, etc., I have remained patient and understanding. That time has passed. I am PISSED.

When Eli was in kindergarten, I voiced concerns about bullying. I was reassured that no bullying would be tolerated, and that the other children were very kind to Eli. In first grade, after assisting with a classroom party, I was approached by a little girl, asking if I was his mom. She already knew, but I told her that yes, I am Eli's mom. She said to me, "He's really bad sometimes. Did he flunk kindergarten? Is that why he's older?" ..........................

Great. So here is a child attempting to get Eli into some sort of trouble by telling me he is bad, and she thinks he's stupid for repeating kindergarten. I explained that no, he did not "flunk" kindergarten, he did it twice to help him out. First grade was not a great year for Eli. He was repeatedly removed from his classroom and sat in the hall much of the year in a so-called Thinking Chair so that he could regroup. Gee, I wonder why he fell behind academically? Could it be all the time he was sitting in the hallway when he should have been in the classroom? Maybe...

This year he was sent to the hall. Once. When it happened, I raised such a stink that it has not happened again. So, what is the solution this year? Sending him to the Special Ed room for a third of the day. He is being removed from the class--again.

I was a little surprised by this revelation, and it has taken me some time to really process it. However, it did explain a few things. First off, it shows me where some of his recent behaviors might be coming from. While he is completely able to dress himself and did so consistently last year, this year he refuses, saying, "I can't." There are several examples of what I call Learned Helplessness going on, and I don't like it, not one bit.

Secondly, it explains why he is so reluctant to speak up in class. If he is spending such a large amount of time outside the class, he is obviously not comfortable there. I mean, there he is, minding his own business, just starting to settle in and POOF! Yanked out. And they say our kids have trouble with transitions. So yeah, let's compound the transitions several times daily--that ought to help, right?

Third, it tells me why some of the kids have indeed begun to target him. They feel that he is stupid. After all, he is taken from the class at least twice a day for extra help. The other kids don't need that help because they are smarter than him, right? Wrong, but that's how the kids perceive it.

I need answers. I have questions. Why is he being removed? What's the basis for this decision? Who decides? Should he be taken from mainstream and put in Special Ed full time if he is so impaired? What is best for HIM?

Sunday night was a rough one here. Eli refused to bathe himself. He yelled at me for getting water into his eyes when I was rinsing his hair and called me stupid and mean for doing so. Afterward, he apologized but he was sobbing as he did so. He told me that he hates school and did not want to go back. He said there are bigger kids at the school who call him stupid and make fun of him. He said he wants to be a different person, that he tries hard to be nice but people are still mean to him.

So there IS bullying going on. He is being targeted for being different, plain and simple, and it is escalating. He is not one to tattle, so the school has had no idea. Even though there is a NO BULLY policy, when is the last time a kid bullied another in plain view and earshot of a teacher? What, just because they don't see it, that means it isn't happening? Don't insult me. It happens a lot, and the general policy is if no one saw it or heard it, it didn't happen. Furthermore, when Eli gets upset he gets hard to understand. His words get garbled. He is stressed. So even if he tells what is happening, who is going to believe him?

I'll tell you who. ME. MY FAMILY. MY FRIENDS. We love Eli and believe him when he says these things are happening.

Back to the IEP. Social coaching and awareness skills. I can't help but think that if I had been listened to for the past several years, that perhaps he would be a bit further along. Not as far as his peers, but maybe he would be a little less behind. So now, I am being a bitch. A total PITA parent. I am writing emails and meeting with staff and I will NOT be silenced by frustration. I am tired of hearing that "Autism is a serious developmental disability and he is always going to have social problems, and this is going to be very hard for him." Really? Ya think so? Gee thanks for cluing me into that since I really had no idea. I know all that, which is why I have been asking for more social help for THE PAST SIX YEARS!

Eli can and will be successful with social interaction. He is bright, charming, incredibly cute, and yes, even funny. He has so very much to offer society, and society will benefit from him. But for now, it's still an uphill battle and one that I am prepared to fight. If I have to be a bitch to get what is best for him, so be it.