Wait, it's October already?

Whoa that first quarter of school is just flying on by! I had written an entry about the first few weeks of school and what we had encountered, then rethought the whole thing.

My son's class now knows he has autism. After getting a request from the teacher to come talk to the class, I had some misgivings. However, Hannah went with me and the two of us shared some things about Eli and autism in the hopes that his classmates might better understand him and why he does the things he does. It helped. I mean, sure, there was some backlash. A couple of classmates who shall remain nameless teased him about certain things, but honestly, since the teacher spoke to the students involved and also their parents, things have really calmed down on the bullying front.

I can't believe how much attention bullying in schools has received lately, but I must say that I am glad it's finally getting the attention it deserves. Recently, no fewer than five young boys have committed suicide due to bullying by their peers. The boys were gay. They were different from the majority of their peers, and the torment became too much for them to bear. This saddens me so much, having as many gay friends as I do. I think of what my world would be like without my dear friends who are gay. It's not a pleasant thought. I adore them and they have been supportive at times in my life when I needed it the most. They know who they are!

So then we come to little ones like my son. The kids who are different from their peers. The ones who don't have a posse to back them up, to stick up for them when others are mean. There are kids like this in every school in every town across the world. The outsiders.

Here's what I propose to those of you have regular old kids. Teach them well. Teach them to stick up for those who cannot defend themselves. Tell them it's okay to step up and say something, rather than being afraid of what others may think. Roleplay some bully situations and let them see how it feels--both to be bullied and also to see how they can make a difference by intervening. I tell ya, it feels great to stick up for someone who can't do it on their own.

My son will always be different. But he should not have to be fearful about everyday situations like going to school. Although we have seen it firsthand, it seems to be lessening somewhat for the time being. I know it will crop up again, and it really pisses me off that I have to teach my son that some people will want to hurt him, to make him cry, to get a rise out of him, just for the sake of doing it--for fun, even.

As time passes, some of his classmates have found respect for my son. They may have once viewed him as a waste of space and time, but no longer. Couple of reasons for that, which I am happy to share.

First off, my son is incredibly cute. And that's not just mama saying it, he really is a handsome lad. Already, he gets tons of attention from the girls. Yeah, that's right. He gets all the chicks, even though he is pretty oblivious to that. They tend to want to mother him, which is fine by me. Secondly, he is super smart. His classmates are recognizing it now, which leads to some friendly competition, academics wise. How many third graders incorporate negative numbers into "make up your own number problem" questions? Eli does, and he completely understands the concept. It's not so hard, even though it's completely abstract.

All in all, we opened up a whole can of worms by talking to my son's class about his autism. Some worms were good, others not so much, but at the end of the day, I feel like it's better to just throw it out there. And bullies beware--there's a whole legion of really great kids just waiting for you to start something.

Snake Oil for Autism

Here at the Mothership, we are accepting of autism as a part of our lives. It's not all doom and gloom and "Oh! Woe is me!" simply because we live with an autistic child.
Sure, there are challenges at times, some of them pretty big. To deny that there are challenges would be dishonest and one thing I am not is dishonest. I've been pretty open with some of the unique problems we've encountered and have no reason to hide facts.

Fact is, there is no cure for autism. To me, it seems ludicrous to pursue a cure at this time. I have a child to raise. While others are busy trying to pinpoint a cause and subsequent cure, I am watching my child grow up. Different strokes I suppose.

But what happens when a parent becomes fixated on, for lack of a better term, fixing their autistic child? For starters, they go to the support forums. Once there, several people will stand out to the new parent as someone who obviously knows all about what is called "the biomedical approach" to curing autism. Ugh. These several people have some theories about autism causation and cures. And they are incorrect. Just plain wrong. Most popular on the list is the now-thoroughly-debunked claim that vaccinations are responsible for causing autism.

Stories abound of a perfectly normal developing child who was lost through the shots. They were just fine until this vaccination or that one, then they were finally diagnosed as autistic and the bottom dropped out of the parent's world. Let me issue a disclaimer that I do understand that adverse vaccine reactions are well documented since the very beginning. Not everyone handles vaccines well. Fact. However, numerous studies have exonerated vaccines as a cause of autism.

Why do some parents fixate on vaccines as the cause of their child's autism? Money. Mean green. Lawsuits have been filed against the US government for mandating vaccinations for entry into public schools. Here is a link for what happened in those lawsuits. In short, there was not enough evidence produced by the plaintiffs in the trial cases.

Those who believe that vaccinations are the cause of autism will try all sorts of unproven and untested therapies on their autistic children. Chelation, massive doses of supplements, clay foot baths (really!), powerful antiviral drugs, Hyperbaric oxygen treatments, even traveling out of the country for stem cell treatments, none of which are approved treatments for autism--these are what I call snake oil.

A partial definition of snake oil, taken from Wikipedia reads: Snake oil is a traditional Chinese medicine made from the Chinese Water Snake (Enhydris chinensis), which is used to treat joint pain. However, the most common usage of the phrase is as a derogatory term for quack medicine. The expression is also applied metaphorically to any product with exaggerated marketing but questionable and/or unverifiable quality or benefit.

It's all about marketing. Parents of newly diagnosed autistic children are easy targets. Autism is mysterious and there are few known causes. My own theory is that sometimes it just happens when the genes of the parents combine in a certain way. My explanation for the rise in autism diagnoses over the past several years is pretty rational. The criteria for diagnosing autism in children changed. More kids are diagnosed at an earlier age, because there is more awareness, and also because Asperger's was placed under the autism spectrum disorder category. Furthermore, diagnoses of mental retardation and disorders like childhood schizophrenia have plummeted as the diagnoses of autism rose. It's simple, really.

So. What got me to thinking about snake oil this morning? This. Oh holy cow. Now it's Lyme induced autism. Wow.

Here's the blurb on it.
New Energetic Device For Healing!
Experience the new Amega AMWand, utilizing Zero Point Energy to provide an incredible benefit to those with autism, Lyme disease and associated disorders. This new wand will be utilized as an "at home" program in assisting the central nervous system, opening up chakras and more! Dr. George Gonzalez, creator of Quantum Neurology, is utilizing this device as his new "patient device". There is not a lot of data on this at this time, but physicians are using it in their offices and seeing results immediately.

Mkay. A wand. To cure autism. Now I've seen everything.

Parents of newly diagnosed children with autism, all I can say is this....

CAVEAT EMPTOR!

If something sounds too good to be true, it probably is.

New beginnings

Summer's almost over here in beautiful Central Illinois. It's been an absolutely wonderful time with hot temperatures ruling the weather. Eli has what we refer to as a "savage tan" to show for his days in the pool and some new muscles showing to boot! I'm wondering how to really keep his swimming momentum going into the fall since he is so at home in the water. Hopefully we can afford a YMCA membership to let him swim all year round, but that's a different post.

New beginnings refers to a couple of things now. First we have school starting this Thursday! The kids are ready. This past month they've become restless and bored with hanging around the house. Budget constraints eliminated most activities, but then again, I can't recall a ton of paid-for activities during my own childhood summers. So I don't feel guilty allowing them to get bored. It kind of fires them up for school to start and see their friends again!

For little Eli, the start of the school year also brings anxiety. We spend roughly the first month that school is in session just acclimating him to his new teacher and classroom and helping him click into a routine. I expect it now, so that helps a great deal. Oh sure, all kids have some trouble adjusting at first, but for most, it passes quickly. Not so with my son. It will hopefully help that for the first time, he will have the same Special Ed teacher that he had the previous year. We had a great experience with her last year and I was delighted that she stayed on!

We have a choice of schools in my town. At last count I believe there were 11 elementary schools to choose from. Each one has its own unique qualities and characteristics. Some are old buildings, some are fairly new, some have AC and some don't, some have a focus on sciences while others focus on performing arts. When it came time to choose Eli's school, I decided to pick the one that most of our neighborhood kids attend in the hope that he would make some friends and play in the neighborhood. Well, that didn't quite work out, as the one boy close to Eli's age who lives on our street is polar opposite, but still, it worked out for other reasons.

There are only two classes per grade at his school. I felt this would be a cozy situation for him, and that by the fifth grade, he would know every child in his grade. He's really good at remembering names now and it does help that most of his classmates have been in his room since kindergarten. They are familiar. He knows which kids are kind to him and which ones leave him alone. He knows which kids tend to bully or pick on other kids and to avoid them. For the most part, they are all great kids. I inwardly groaned when I saw that the resident tattle-tale was once again in his class, but even tattle-tales deserve a second chance.

In previous years, we've experienced a great deal of anxiety with the beginning of the new routines. It takes Eli a good long while to really settle in. But I am very hopeful this year. He has shown some great growth over the past year in a lot of areas. He converses much better and sometimes even listens to answers of his unending stream of questions! He tolerates some good natured teasing now, which is a huge step. This morning I told him he was a pretty boy, which I know he hates, but I was tickling him at the time, and told him I said it just to tease him. Teasing of this nature is not unkind, and he is finally beginning to grasp that concept.

Our other new beginning is a new doctor for Eli. This in itself is a huge step for me. I took Eli in for a checkup this summer and was incredibly disappointed in the lack of expertise that my old family doc possesses concerning autism disorders. He's a great doc for ear infections and the usual childhood ailments, but since Eli rarely if ever suffers from those ailments, the doc has outlived his usefulness for us. Deep breath. After seeing him and having him once again wave off a lot of Eli's issues and tell me to book appointments with the local developmental pediatrician, I bit the bullet and ran the other way.

A bit of history on our local developmental pediatrician. Just from my perspective, as we only saw him once, when Eli was 5 (I think). I filled out 14 pages of questionnaires for the appointment. The ex and I took Eli in for the appointment, and the doc spent around 45 minutes talking to us and referring to the pages I'd completed. He told me and the ex that it seemed like Eli was outgrowing a lot of his autistic symptoms and sent us on our way. That was it. The ex took that tidbit of information and decided that Eli's autism was no big deal, that we need not look into additional therapies, yada yada yada. It was his golden ticket.

Here's the thing. Those of you who have autistic kids already know that yes, many symptoms will fade and/or disappear over time. You also know that those symptoms will be replaced by different, sometimes more challenging symptoms as the child matures. Yep. That's what happens. I feel that a really good doctor would have helped more, been more involved, I don't know. I just felt sort of cheated and misled.

So here we are, Eli is now 9 years old and still very much an autistic boy. He is a sweetheart but I cannot deny some of his issues. The biggest one right now is anxiety. Seemingly innocuous events and occurrences will cause him to melt down. Sometimes it is obvious what caused it, others not so much. He is developing better self control, but the truth of the matter is that a melt down is disruptive in school and at home, and his self control is just not good enough quite yet.

After bailing on the old family doc and the local developmental guru, I phoned Easter Seals to ask for help. We do not have medical insurance. I am still looking for work, with no luck, and don't yet qualify for Medicaid, but there is a state run program for kids that I've applied to. At this point, I really don't care if I go into debt for him. He needs some help. Easter Seals gave me the number of a developmental pediatrician an hour and a half from our city. My reasoning is that E.S. does not have any interest in promoting a certain doc, while our local hospital does have that interest. The local network will only refer you to docs within their network, right? They look out for their own, whether they are really good or not. According to the nice woman I spoke to at E.S. the doc she referred me to has come with great reviews from other parents of autistic kids. That's good enough for me.

So mid-September, Eli and I will travel to meet the new doc. I am really pretty excited about it. I anticipate more referrals for child psychiatrist and pediatric neurologist as well. That's all part of it. Whatever it takes to really help Eli is what we will do. I don't expect miracles, and I know that there is no magic wand for his anxiety, but what I hope for is tools to help him manage it better. I think that's being realistic.

Wish us luck! New school year, new doctor, and new beginnings. Pretty cool, don't you think?

What I've Learned

My son turns 9 years old tomorrow. WOW. Time really does fly by when you're busy!

He showed up on time and was absolutely beautiful from Day 1. He is my fifth child and I knew what to do, no new mom nervousness at all. Early on, it became apparent that he was a little different from my other children. He didn't fuss more, or need more attention, but he developed on a different schedule than most children. He still does! And you know what? I'm okay with that.

Here is why I am okay with it. I believe that he has taught me more about being a parent than all my other kids put together. Oh, sure, they've all had some input. I learned about drama from my teenage daughters, I learned about picky eating from my oldest son, and I learned about daredevil tendencies from my second son (complete with a couple of trips to the ER).

Eli taught me so much more. He's made me a better parent for all of them. How could one little boy affect a veteran mom so much? Let me tell you.

He is autistic. We discovered it fairly early and I was pretty overwhelmed and yes, a little stymied at how to mother him. He showed me. When he did not begin to talk on schedule, I learned how to decipher his cues. I became more sensitized to non-verbal cues than I had to be with my other kids. As a result, I now am more sensitive to non-verbal communication with everyone. I have become pretty adept with reading body language. Thanks, Eli, for that.

When he developed some pretty strange eating habits, I initially panicked. He was not getting much bigger, and was not a huge kid to begin with. No one wants to watch their child starve. For an entire year, he ate a pretty limited diet, but he was eating, at least. I learned that a limited diet is not the end of the world, and as long as he was getting his nutritional needs met, it didn't matter if he ate the same things every day. He grew. So I learned that even though I would get really sick of eating the same things every day, it was fine for him.

I learned that developmental milestones are different for everyone. Although he did hit some of his milestones very late, he hit them eventually. One of the first to be obviously delayed was walking. He did not walk until he was 17 months old! For a few months before he started walking, he walked on his knees. He had calloused skin on his knees, but it was his method of getting around, and although none of my other children had done it, that was okay. He'd be knee-walking on the sidewalk, smiling from ear to ear.

I learned that what I want out of relationships is not necessarily what he wants out of them, and that a full dance card is not required for friendships to be successful. My other kids have a lot of friends. My house is frequently full of many people of varying ages, and I worried that Eli did not have a huge list of friends coming over or inviting him to play at their house. That's okay. Friends come in all shapes and sizes, and some of the people Eli connects with are not his age. Some are older, like his siblings' friends who make an effort with him. He does have a few little buddies at his school, so that's encouraging! But just because he doesn't have the same type of friendships that his siblings have doesn't mean it's wrong. It's just different.

I learned that patience is not just a virtue--it's a requirement. And it pays off. We've discovered that although it may take far more repetition for Eli to grasp a concept, once it's there, it's there forever. He is the only one of my five children who actually carries his own plate to the sink every single time he finishes. He's great with rules, once he understands what they are.

I learned to be more resourceful with Eli. When he began school, my oldest son was in his senior year of high school. The others were all still in school, as well, and none of them had required special services in their education. He did, and still does. While I do place a lot of the responsibility on the school, it became apparent that I would have to follow through and push for things I knew would help him. I've had to develop a relationship with his staff for his benefit. I've had to research a lot on my own for programs that would help him. It has paid off a thousand times over what I could ever have hoped for.

I've learned to focus not on my son's disability, but rather to focus on his abilities and help him to shine. He has an amazing sense of humor, tells great stories, and kicks some serious butt on video games. He likes to help cook and is willing to try almost any kind of food, especially if he has helped make it. He can roll out his own pizza crust with a rolling pin, fix it the way he chooses, and really enjoys it more than any pizza you can buy, since he did it himself. He has spent most of the summer in the pool, and can swim across it completely underwater. He has not had any swimming lessons at all, but he can do it! He loves jumping in Cannonball style, splashing me and his sister on our floaties. There is so much more that he can do--I focus on these things, rather than bemoaning what he can't do.

I have learned so much from Eli. I can't even begin to tell you all of it. I am so very proud of him for coming so far in such a short time. And although there are days when I get discouraged from setbacks or problematic behaviors, I've learned that there is always tomorrow. And thanks to him, I know exactly how many hours until morning when I put him to bed each night.

HAPPY BIRTHDAY ELI!

Summer Camp WIN

What a difference a day makes!

I took Eli back to camp today. I'd gotten so much feedback on my facebook posting from my amazing friends...all saying to give it another chance. So....

I drove him over to the camp, coaching him the whole drive on what I expected from him, and what the staff would expect from him. I reminded him to watch the other children to see what they were doing, if was unsure, and told him that if he needed a break, to just TELL them.

The assistant director greeted us and Eli took his shoes off himself, stowed them and took off like a rocket. Okay, bye honey! So much for separation anxiety, right? The assistant director and I chatted for a few minutes and I thanked her for offering to try and make it work for Eli. I also gave her a heads up on overload reaction and how to try and avoid it. I told her that he takes sensory breaks at school when situations arise that stress him. At school, he is allowed to sit in a beanbag chair and regroup. I suggested that if she or the staff noticed him becoming agitated, to just offer him a break!

I motored on back to the Mothership to hang mass amounts of laundry out to dry. Our dryer broke about a week ago and I am pronouncing it DOA. The entire time he was at camp, I had my phone nearby, just in case. My family will tell you that this is unusual. I am not a slave to the phone. I frequently forget where it is, whether it is charged, whatever. Not yesterday! I obsessively checked it all afternoon, but that call never came.

At around 4:00, I drove over to campus to pick him up, getting there about 15 minutes early so I could see for myself how it was going. I stowed my flipflops in a cubby by the door and went into the big room with all the kids, not immediately seeing Eli. One of the staff, a nice young woman, pointed him out to me, working on his journal. He was deep in conversation with a photographer taking pics as I approached. The photographer is a great kid who lived in Japan for a year, so Eli had lots of questions for him. I peeked at Eli's journal and saw that he was trying to copy the characters from artwork on the wall, and it looked pretty good!

The assigned kids for clean-up started swiffering the floor and I told Eli it was time to go. As I got up, the instructor for the camp approached me smiling, telling me that Eli had asked for a schedule of the day's activities at the beginning of the session. She typed up a schedule for him and showed it to me. Wow! What a great idea! At that point in time, I was so dang proud of my little one. It made perfect sense. He likes to know what's going on and what time it's happening, so this was really an amazing thing for him to come up with ALL ON HIS OWN. Dumb old mom didn't think of it--he did!

My hat's off to Japan House and its wonderful staff. They took on a challenge with my son and they made it work. To his credit, he made it work, as well.

Autism is a challenge at times. There are so many activities that my son cannot be a part of because of it. But as time passes, I am discovering that there are just as many activities that he CAN be a part of. No, he does not play regular Little League, but he has enjoyed playing baseball with the Challenger League. No, he can't take part in many summer camps, but there are many others available that will accommodate and accept him as the wonderful addition he can be.

Opportunities are out there. My take away from this entire experience is this---Don't give up the first time you stumble or fall. Get up and get going again, and most importantly, have some fun!

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.