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.


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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.

Ch-ch-ch-changes

Time to shake things up a little bit. If it ain't broke, don't fix it, right? Turns out it's not broken, but still needs a little change.

Routine. Autistics tend to rely on routine and find comfort in it. For example--mornings I take Eli breakfast in his room. He's slow to wake up and mornings are hectic so I don't mind taking it to him and allowing him to eat there. No problem, and I don't see a reason to change it. Another routine--dropping him off at the same spot each morning and watching as he walks into the school. PB & J for lunch--yet another routine. Same old same, but it works.

But what happens when a routine becomes a problem? What then? Rip the bandaid off or pull it slowly? For most people, ripping seems most humane. Get it over quickly and it will be less painful. With Eli, slowly seems to be the answer.

Eli's dad and I are no longer a couple. The transition was slow, and sometimes quite painful, with his dad sometimes returning home for periods of time. Ultimately, we both knew the breakup was coming. So when we finally called it quits, it was no big surprise. For Eli, it seemed as though he had accepted it in his own way over the course of a year or so.

At first, his dad did not even see Eli for periods of up to and over a month. He just didn't show much interest. However, people change and over the course of this past summer Eli started spending weekends with his dad. Every weekend. Without fail. I must admit that this made me happy for a couple of reasons. First, his dad was finally taking an interest in his only child. That's a good thing on every level. Secondly, I got some much-needed and very appreciated respite from a reasonably high-maintenance child. Over the course of time this weekend routine has become a problem. Allow me to explain.

The Mothership is a very active household. There are at present time 6 of us in residence, including siblings, not including pets. We have two Labradoodles, Max's little mutt dog, five cats and two parakeets. It's loud, busy, and frequently messy--all factors that make an autistic kid a little on edge at times. His dad lives alone in a two bedroom apartment that does not allow pets. He also is unemployed, which means that the time he spends with his son is probably the most fun he has all week. No siblings, no pets, no noise, very little mess. He gets to be the center of attention at ALL times, being spoiled with his favorite fast foods and video games. Weekends are free time which means no getting up for school, no homework, and lazing around all day long.

Home, on the other hand, came to mean home-cooked food, homework, getting up every morning for school and the frequent chaos of a busy household. Guess which one Eli likes the most? You got it. Dad is now King.

This hurts me beyond what I could have expected. His dad has never read a thing about autism. He does not attend meetings, though he has occasionally gone to doctor's appointments with me, most recently to see a developmental specialist. That was over two years ago. So yeah, I have borne the brunt of parenting this very special little boy. I fight for him. I get up in the middle of the night with him. I make sure he gets his coat zipped and he has fruit snacks in his lunch for dessert. I get him to school on time every day so he doesn't have to get a Late slip, which he hates. I help him navigate social waters the best way I know how. I adore this little boy.

So, imagine having him walk in the front door after a visit at dad's, telling us we are all "lame", that he hates our home, he doesn't want to be here, he wants to stay at his dad's. Crushing. It is really all I can do to not just go to bed and cry over it at times.

Time for a change. Shake it up a bit. After talking to Jim about it, we came up with a plan. Instead of every single weekend at dad's, Eli is starting an every other weekend routine, with him also going to dad's each Wednesday night and dad taking him to school Thursday mornings. The reasoning is that if his dad has to take him to school, getting him up and to school early, then maybe Eli will understand that it's not just ME, it's reality that he has to go to school. Further, our family has some really fun times on weekends, and Eli has been missing out. And we miss him.

Our first shot at this didn't turn out so great. I went to pick him up from school after his first schoolday from dad's and he was not happy to see me. He was confused that it wasn't his dad picking him up. He was angry. The day didn't progress well from then. I was hurt, he was pissed, and neither one of us did a very good job of hiding our feelings. But we did eventually bounce back and I am still sticking with the new routine. This weekend should be fun, with some friends coming over tonight for a birthday celebration and a gingerbread house for Eli and Hannah to construct tomorrow. I am looking forward to letting Eli sleep in tomorrow morning and just play around all day. No structure, no routine, just play. Watch tv, play Toontown, make a gingerbread house and maybe some Christmas cookies. I dunno, really. Just an average weekend--at Mom's.

We are all on the same team!

So here we are. School meetings. Can I just say that my son has an outstanding team of people behind him?


Yesterday was the first time since the beginning of school that we have had a Team meeting for Eli and it went fantastically well. We all packed ourselves around a table, sitting in tiny chairs, meeting agenda sheets in front of us to talk about that sweet little kid I call my son. In attendance were:
Principal and Assistant Principal, Classroom Teacher, Cross Categorical Teacher, Teacher Aide, Speech Therapist, Occupational Therapist, Social Worker, Autism Team Member, and of course, Me.


It was a great meeting! The format is casual, as this is not an official IEP meeting. It's a format where we meet every other month to discuss progress, strategies that are working, strategies that are not working, and goal assessments. I know these people well, which is an advantage. It doesn't matter that some of the team is new this year--I've been in contact with all of them--sometimes on a daily basis. Each day when I pick him up from school the aide walks him out after he has "checked out" on his goals sheet with his social worker and she gives me the low-down on how his day went. If he meets his goal, 80%, we stop at the gas station for candy. If he does not meet his goal--no candy. Sugar is a motivator and I am not ashamed to use it.


We are a TEAM for Eli. What this means to me is that we should all have the same goals and support each other. But Eli is a member of the team as well. Though he is not present at these meetings in person, we each feel his presence in the stories we share--both the accomplishments and the failures. There is a quote about how someone learns more from their failures than from their successes but I'm too lazy to look it up. Makes sense though.


I have written in the past about Eli's conversations and experiences with other children, and how I would like for social coaching to be a part of his personal curriculum. As he grows older, his differences from his peers will become more pronounced, not less. He is not going to just blend in. That's okay. We are not a family of blenders. We are individuals and all have something to contribute, right? So now, two years after I started pushing for socialization coaching, someone listened.


Eli loves other children and tries to engage them, but sometimes is too intense. He tends to obsess, which is okay in some instances, but if he is asking a question repeatedly, not listening to the answer, it turns other kids off and they wander away. Problem is, Eli is not paying attention. It was the OT who came up with a plan, bless her heart. She has noticed that though Eli may be paying attention with his ears, his eyes are not where they need to be for successful interaction. He needs continual prompts to look at his buddy--to notice facial expressions and body language. He's very good at decoding expressions and body language, but if he isn't even looking, he isn't going to have anything to decode.


His OT is a mom. She has four beautiful daughters who are friends with my older kids, and one of the girls has a learning disability. She understands the pain of not being included and really wants to help Eli connect. WOW. Someone who gets it! Her plan involves a lunch buddy for Eli--an older child to eat lunch with and help him navigate on the playground at lunch recess--a 4th or 5th grader who is likely to be a bit more patient than his peers and guide him in the mysterious ways of interaction. I LIKE this plan.


Don't misread my post by assuming that Eli is a total social outcast. He isn't--yet. The plan is to help him learn to converse/interact in a semi-normal way with typical peers. He wants to, and his classmates want to as well. His aide tells me that as soon as he hits the hallway in the morning, there are greetings coming from all directions. The other kids want to be his friend, but they don't know how to deal with him. It's just a matter of meeting in the middle, really.


And please, if anyone has suggestions for helping him learn to pay closer attention to nonverbal cues, share them here in the comments. As far as I am concerned, if you are reading this and you care about Eli, you are part of his team. Doesn't that feel good?

Give a Little Bit

I received an invitation to an event on Facebook a couple of days ago. This is not an unusual circumstance as I get invitations all the time, usually to my son's punk shows in the basement of his house or at a similar venue. While I do enjoy seeing him drum and hordes of young people sweat, I frequently turn down these invites. It's tough being the oldest, yet freshest smelling attendee.



No, this event is different and ongoing. It's an event that must be attended. And it has nothing to do with autism, so if that's why you are here and reading, I apologize.


In short, our local Women's Shelter is in danger of closing its doors due to lack of funding. It's not a homeless shelter, per se. Rather, it is a safe haven for victims of domestic violence or sexual abuse and their children. In these unbelievably already trying times, women may soon have no where to go, no one to talk to in the most difficult time of their life--a time that they are trying to break free and start anew.



It's no mystery as to why this is happening. State funding has been cut and employees have been laid off. Those who remain have no clear idea of when or even if they will be paid, yet they stay. That is dedication. That is caring and concern.



The shelter needs help, and I intend to give it in anyway I can. I am free in the daytime and hope to be able to volunteer in some capacity, whether it is manning a phone line or helping to raise much needed funds or organizing other volunteers. At the very least, a monetary donation will help, no matter how small.


I feel very fortunate in my life. I am healthy and happy, as is my family. I don't fear for my safety in my little world. But for scores of women, fear is a reality they cannot escape without help. Please, if there is anything you can do, monetarily or otherwise, pitch in. Without help, the shelter will be closed and women will really have nowhere to turn. If you cannot help monetarily and live far from here, please contact your local women's shelter to volunteer in some way or donate clothing, toys, furniture--whatever they may need. This is everyone's concern and if it isn't, it really should be.


Thanks for reading. Please visit A Woman's Fund for information on how you can help.

I gave up. Plain and simple.


I've left the forum about which I blogged yesterday, never to return. Why? I'll tell you why.


All it really did was make my blood boil. So many people there, yet only a handful of people posting away, squatting there all day long. I found myself embroiled in a silly contest of trying to counteract all the madness of the anti-vax crowd by posting actual autism news stories and supportive posts, but it was a losing battle. In the end, very few people commented on the actual autism news stories, which indicates a lack of interest. People want to read all the doom and gloom and warnings of impending mind control. They must, or there would have been some sort of response.


I had started to visit the forum far too frequently over the course of my day. Morning, noon and night I was logging in, seeing how many new anti-vax threads had begun and how many tragic stories had been posted with titles like Autistic Boy Hit by Truck Dies. They were countless. It was depressing and frustrating all at the same time, and that can't be good.


I was asked why I started going back by someone close to me, and I really had no good answer other than, "I'm bored. I really have very little to do during the day. At the very least, I'd like to think that I could help someone with advice on how to get a stubborn preschooler's foot into his shoes." Hint--Bend the child's knee. It uncurls the toes and the foot slides right in. But ultimately, I have to admit that I am drawn to the drama.


I'm not accustomed to being unemployed. It sucks, big time. There is no lack of money, thanks to unemployment, but I am seriously bored out of my mind. There is only so much housework I can do before I start to feel like a live-in maid. I only see friends occasionally these days, since they are busy with their jobs and lives. I am not. I am stuck at home. I hate it.


So the drama was a big draw. It was something to do to pass the time, watching people snipe back and forth at each other, toeing the line constantly to keep from being warned or banned by the moderators. It always puzzled me that the moderation on the forum was so incredibly inconsistent. And of course, there are the two sides involved--the crowd who absolutely buys the Vaccines Cause Autism hypothesis and the crowd who doesn't believe it for a minute. Each side cried out that the moderators favored the other side, much like a couple of kids who think the other is Mom's favorite.


I have a novel I've started but can't seem to prod myself into completing it. I know that very few people actually have their work published and it's tough to convince myself that writing is going to pay off one day. It's a fun little book, and the characters are indeed colorful and well-developed. The plot is outlined and I do enjoy working on it, but it's tough to make myself keep plugging away at something that may turn out to be a colossal waste of time. So, rather than set myself up for rejection and failure, I turned to the mental stimulation of the forum. Stupid, right?


I'll not go back now. I can find other ways to pass the time. Today, for example, I'll start carving pumpkins and take Eli to lunch at McDonald's after an early out from school. Parent-Teacher conferences are today and tomorrow, but I am off the hook for those. We have regular team meetings for Eli, so it's a waste of time to do a regular conference. He is having a great year at school after a bit of a bumpy start and I don't anticipate a ton of issues to discuss. In the long run, he is the only autistic kid I really need to worry about, and that's just as things should be for me to keep my sanity. There are other experienced moms on the forum, so I'll just turn over the reins to them and mind my own damn business.

We have five new residents here at the Mothership. Most if not all of them are temporary, but they needed a place to stay and I try to be welcoming and help out when I can.

Ophelia came to us through a facebook connection who posted the following status message a couple of weeks ago.

Young white Siamese kitty with sable brown mask around sky blue eyes dropped off at campground. She's beautiful, knocked up, and looking for a home. Anybody?

You can imagine some of the comments, and they were numerous. I'm such a sap, I agreed to foster her through delivery and weaning of kittens. We waited for several days after she arrived, but in the wee hours of Monday morning the kittens were finally born. Healthy, happy, and quite beautiful, the momma cat has adjusted quite well to her surroundings. I took Eli up to see them before we left for school and his response was, "Awwww, they're adorable!" A friend of mine jokingly remarked that "If he wants to be autistic, he'd better quit saying stuff like that."

He made up for that remark later that day when we went to say hello to a little boy after school in the parking lot. H has Downs Syndrome and doesn't speak very clearly, but is a sweet and happy boy. I steered Eli toward him and his mom, asking about aide assignments for the year so far, as this is a bugaboo for us--rotating aides. Eli jumped right into the conversation by mocking H's speech and I was mortified. His mom took it in stride, but I didn't. She explained that his muscles don't always do what H wants them to, and that's why he struggles so much. I think Eli understood it pretty well and as we walked to the car, we talked about how hard it must be for H to want to communicate but have such a difficult time of it, through no fault of his own.

We kept talking and I tried valiantly to explain how an extra chromosome can affect someone. Just one little tiny piece and it can cause so many challenges and health problems. I mentioned that some people with Downs Syndrome have heart problems and Eli was really concerned, asking why doctors can't just take out the Downs Syndrome. Yikes.

He really is a compassionate little boy and I don't think he intended to hurt H's or his mom's feelings by mocking. I want to believe that he was just making an observation, not criticizing. I recently brought up the fact that Eli has autism to him with a homework assignment that innocently asked, "What makes you special?" He was stuck on that question, not knowing what to write and I said, "Well, you have autism, and that makes you special. It's what makes you so good at math but not so good at making friends and playing together. It's what makes some sounds too much for you--why you don't like bright lights and stuff like that." It made him uncomfortable talking about it and in the end, he refused to answer that question, making me feel like I had jumped the gun.

But I didn't. He does have autism. He should know it. We ALL have something about us that makes us unique, and his autism is a big part of who he is. There is nothing to be ashamed of--it's HIM and he is really a delightful kid most of the time.

And he's becoming more typical as he ages and matures. We see this more and more these days -- things he says and does that make me question his diagnosis. Then he blurts out something as he did to H and I don't question it. A typical 8 year old would spot a difference in H immediately and innately know to not mock his speech, at least not in front of moms or teachers. He saw nothing different about H.

We don't treat Eli much differently than we treat the other kids in the house. He takes his dishes to the sink, will set the table for dinner, and is learning to put his clothes in the hamper instead of on the floor. He is held accountable for his actions and disciplined accordingly. But sometimes, we have to adjust. Last week, Jim walked up to Eli and greeted him with "Hi Eli! What are you doing?" and Eli reacted with a hateful "Leave me alone! Just go away!" Jim was frustrated, as he had a right to be, and I had finally had it with Eli's response. Rather than just send him into timeout or to his room for being rude, I decided to experiment with a little role-playing. I had Jim go back inside and told Eli that he was rude, to try it again. I coached him to respond with "Hi Jim! I'm playing my game." or something to that effect, rather than telling him to go away. I told him that it makes everyone's day nicer if he responds nicely, rather than rudely. Jim came back out, greeted Eli, and Eli responded as he was told to. Not that big of a deal, but it worked. From now on, if Eli responds rudely to someone greeting him, we will have a do-over, until it finally sinks in.

In the long run, it will sink in. It will pay off for him his entire life--knowing how to respond accordingly--but it is going to take time and effort and consistency. That's okay. He is completely worth it. And he proves it by saying things like, "Awww! They're adorable!" because the kittens are really adorable, and so is he.