Mutterings Of A Mindless Mommy

Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum is looking for your fiction, poetry, and personal essays. Our inaugural issue is planned for October 2008. Send submissions to submissions@hyperlexiajournal.com and please include the full text of your writing in the email if you send a PDF or a Word file. Deadline for submissions is August 31, 2008.

Hyperlexia is interested in honest, thoughtful, well-written poetry and prose about being autistic, and loving someone with autism. Our journal is a celebration of real life with autism, both the good and the bad. We want genuine and truthful writing about autism. You can be serious, sad, or funny. We believe in respecting the diversity of the human mind and discriminatory writing or hatred of any kind will not be published. Submissions should be 1500 words or less.

I just watched a BBC Four Documentary called “The Autism Puzzle” by Saskia Baron and found it to be one of the more balanced documentaries on autism that has been produced in recent years.  The documentary dates back to 2005 and Saskia Baron approaches it as the sister of a profoundly autistic man (Timothy) who was diagnosed back in the 1960s.

In that day and age, children with autism were typically sent away to institutions.  Saskia and Timothy’s father, Michael Baron, ended up co-founded the National Autistic Society in the United Kingdom in 1962.  The documentary had several clips from the autism school.

Saskia Baron touches on the belief that some hold about the MMR vaccination causing autism and explained that there was no MMR vaccination when her brother was young and he was most definitely autistic. 

In watching the documentary - a few things really stood out to me:

An autistic boy of 12 or 13 was working with his speech therapist and he stopped in the middle of his activity to rub his cheek on the therapist’s arm. Watching the way he rubbed his cheek back and forth reminded me exactly of my daughter. She loves to rub her cheek on people and the motions/mannerisms between my daughter and the boy in the video were almost identical!

A common thread brought up by the parents in the video was that their children had major difficulties with sleep. This is something I’m actively dealing with right now - *yawn*.

John Peters, a British man, was diagnosed with Asperger’s Syndrome at the age of 56. One of his grandson’s was being evaluated for autism and the doctor mentioned the grandfather’s quirky mannerisms. Sure enough - an Aspergic grandfather has two Aspergic grandsons.

A mother of two children on the spectrum stated that if there were a magic wand to take the autism away, she wouldn’t use it. She doesn’t feel that there is a “normal” child trapped within her children like being in some sort of prison. The mother went on to say “I think our job is to learn to live with it, with them and to allow them space to be the sort of people they are.” Talk about accepting autism!

So while watching this video - an interesting ad popped on my screen. 

The Body Ecology Diet - We Have Answers to Heal Your Gut…Prevent & Reverse Autism

Huh?  Prevent autism?  I understand that a lot of people on the spectrum also have gastrointestinal issues but prevent autism?  So I decided to check out the Body Ecology Diet website and there is a link to Autism & ADD with information on a three day workshop - “Taking the Mystery Out of Autism.”  Okay, that doesn’t sound too bad - everyone and their mom is hosting an autism workshop these days.

So I decide to look at the brochure (just curious, mind you) and guess what the price tag on this three day workshop is?  $999.  Yup, that’s right - a smooth thousand dollars to have the privilege of attending a workshop “based on the teachings of Donna Gates, M.Ed. and Leonard Smith, MD.”  So the Body Ecology Diet was created by a person with a Master’s in Education?  Odd.

Back to the $1k price tag - that is outrageous.  Here are some comparisons:  Autism Society of America, four-day conference, $225; DAN! Conference, three days, $425; Autism Summit 2008, three days, $395.  Now I’m not saying any one of these conferences is a great place to go but just comparing apples to apples…one autism conference/workshop to another. 

I may be off base but it sounds like the Body Ecology Diet is just another way for people to profit off of the whole hyped up autism issue.

According to Chelation Therapy: Unproven Claims and Unsound Theories by Saul Green, Ph.D:

Chelation therapy, as discussed in this article, is a series of intravenous infusions containing disodium EDTA and various other substances. It is sometimes done by swallowing EDTA or other agents in pill form.

When my daughter was going through her autism assessment period back in the Fall of 2006, I mentioned it to a naturopathic physician (NMD) that owns a local health/beauty spa that I attend.  I tend to look at things from a natural and holistic approach so it was only natural that I mention this to the NMD.  She told me to come see her after I found out for sure because there was a chelation study being done at our local naturopathic college. 

Although I respect the NMD, I never made that call.  I did my own research on chelation and decided that it wasn’t a choice I wanted to make for my child.  Since that time, I’ve learned of neurodiversity and as I’ve mentioned before I fall on that side of things.  Of course I am a firm believer in to each their own and it is not my place to judge so I still hear/read about chelation on a regular basis.

One of my local parenting email groups had a message go out today about a Newsweek article that hit the online mag today:  Fringe autism treatment could get federal study:  US researchers want to study alternative treatment for autism; chelation called quackery.

The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science. Mercury hasn’t been in childhood vaccines since 2001, except for certain flu shots.

The article goes on to explain that Dr. Thomas Insel, the head of the National Institute of Mental Health (NIMH), supports the proposed testing of chelation in children. The study, still in its proposal stages, is on hold while the safety issues are concerned.

Here is where *my* personal concern is - the safety of chelation. I’ll disregard the notions of curing vs. diversity as well as the efficacy of chelation, let’s look at the safety of it. Kristina Chew, the Autism Vox, is one of the best autism bloggers in my not so humble opinion. In November of 2007, Chew posted on a child’s death after a chelation procedure: Doctor Faces Trial in Death of Child After Chelation Treatment.

Chelation supporters will point to the doctor’s errors in the process as the cause as oppose to the actual chelation itself. To this I ask, how many times has a child died in a social skills group or during speech therapy? Both of these autism therapies have helped my children tremendously but at no inherent risk to my child.

Kevin Leitch of the UK-based blog Left Brain Right Brain wrote on the same topic today - check out his take on things: Chelation study to be ‘released’?

Alexander is very rule governed. If he believes that something is a rule, he will follow it to a T. He follows through so much that earlier this year when he was coming off of Versed after a dental appointment, he managed to kick me in the head while driving without taking off his seatbelt. You see, he was mad at me for having him take the Versed and he wanted to kick me in the head. However, the rule is, you leave your seat belt on if the car is on. So even in an irrational moment like kicking his beloved mother in the head, he still followed the rule.

So today he tells me that he is going to pick up his room. He loves charts so I create a chore list with little check boxes so that he can check off everything he did. Silly me didn’t realize that I would have to list everything in the room. He gets through the chore list and proclaims that he is finished. One quick peek in his room and it only looks marginally better than it did prior to starting his adventure.

I remind him that he needs to clean his entire room. He goes into his bedroom and comes out a few minutes later with a paper that states:

A New Rule

Clean only what is on the chore list.

I take the paper from him and rip it in half with a wry smile. His eyes got huge and his mouth dropped then he started giggling. He took the paper from me and put it in the garbage then returned to his room. Now I must say that Alexander and I have this very odd sense of humor so I knew how he would react to my ripping the paper. I was not being demeaning, etc - it was playful and he knew it as such.

After a few more minutes in his room, he walks back out with a new piece of paper.

A New Rule.

Moms who rip rule papers will get their butt kicked.

I immediately started laughing and he followed suit then quickly gave me a kick on the backside. We laughed and I put the paper away for posterity. Yes, I am a weird mom and I thought this was funny. What is even more funny is the rule is, we don’t say butt. We say bottom, behind, etc. He never says butt. I never said the rule was we don’t write butt.

Gotta love my little rule follower!

When an individual has Asperger’s Syndrome and is also gifted, s/he falls into the category of twice exceptional(2E).  The same would be of a child with ADHD and Giftedness or a whole bevy of other conditions.  A child could even have a reading learning disability but be gifted in math and thus, twice exceptional.  Twice exceptional students present an interesting challenge to teachers - whether the child is homeschooled or in a traditional classroom.  One benefit of homeschooling a 2E child is that the parent can tailor the education specifically for the child.

My son is twice exceptional having officially been declared gifted in the verbal arena and nearly gifted in mathematics (95th percentile).  However, his anxiety crept up when the school did a giftedness assessment on him at the end of Kindergarten (per the teacher’s recommendation).  He actually scored in the at-risk range verbally (20th percentile).  When he had one-on-one testing with the neuropsychologist he scored in the 98th percentile. 

So now it is the end of 1st grade, a few weeks ago Alexander’s teacher informed me that she would like to recommend Alexander for the ALP (Advanced Learning Program - also called GATE) testing.  She said he has strengths that are commonly seen among the gifted and knows of his scoring with the neuropsych.  I talked to Alex about it and he said sure, that one of his closest friends was going to do them this year and he wanted to as well.  So I signed off on it and testing started yesterday and will continue through tomorrow.

The school uses the CogAT (Cognivite Abilities Test) which is administered to a group of children.  Alexander told me yesterday that there were 3 plus 3 plus 3 plus 1 students in the room, all first graders.  He said his ears were working well, his nerves stayed behind and it was fun.  I don’t care what the results are, I’m just glad that it isn’t an anxiety-riddled event for him.  Group-given tests like this aren’t really a strongpoint of a child with attention and auditory issues but hey, ya never know, right?

I see Hans Asperger’s name butchered on a daily basis.  Hans Asperger was the doctor who “discovered” Asperger’s Syndrome.  According to the OASIS website:

Asperger Syndrome or (Asperger’s Disorder) is a neurobiological disorder named for a Viennese physician, Hans Asperger, who in 1944 published a paper which described a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills. In spite of the publication of his paper in the 1940’s, it wasn’t until 1994 that Asperger Syndrome was added to the DSM IV and only in the past few years has AS been recognized by professionals and parents.

However, I see his name misspelled all the time.  I’m not just talking about people who are casually mentioning AS but from people who either have AS themselves, have a child with AS or are professionals that deal with AS.  This is not a matter of regional spelling, this is a person’s surname.  There is only one way to spell his surname.  There is no regional spelling of his surname.

A common joke among both Aspies and those with friends or family members with AS is “Oh no, it’s teh Ass Burgers!”  For those not joking around, please give the good Doc a little credit and spell his name right.  Thanks!  *wink*

On a car ride home from an after-school activity tonight Alexander tells me, very nonchalantly, “I’m weird.”  Seeing this as a chance to learn more about what he’s thinking I very carefully approach the ‘conversation.’  He doesn’t have many true reciprocal conversations with me but if I can play my cards right, I can get some good information out of him.  So I casually asked “Who says that?”and he says “people”.  I said “what people” and he said “my friends, sometimes Brooke” (Brooke is the little girl that he punched in the eye the other day). 

 So I waited for a minute then asked “what do you do that is weird?”  He responded that she said he acts weird.  Okay, typical first grader “stuff.”  One more question “Is anyone else weird?”  He names off three other boys, one of which I am almost certain is on the spectrum as well based on what Alexander has told me about him.  I try to get more information but that is the end of the conversation for the time being.

As we get home and get in the house I ask him “do XXX and YYY also leave the classroom for part of the day?”  He said “yeah, we don’t see them after lunch, they go to the special dark room with ZZZ.”  Ah hah!  hehe  Alexander is not on an IEP, he is attending a school a few districts away and if he ends up on an IEP we lose our ability to attend the school.  If he *needs* an IEP we’ll do it but right now his teacher is fantastic and makes accommodations without needing anything in writing.  Whew. 

Alexander only knows of this room because ZZZ gets to pick classmates from his inclusion room to take to his special sensory room to play games, etc (I’m guessing this is a social skills activity).  Alexander told me all about it one day - he loved it because there weren’t bright lights that make buzzing noises hehe.

I love my “weird” Alexander but told him a better word would be unique and reminded him of a book we have - I Am Utterly Unique.

Last week was Spring Break for my son.  I’ve been contemplating weaning him off of the Risperdal because he’s been doing really well with aggression (the dentist’s office meltdown doesn’t count) and has learned some good coping techniques.  Although I understand the need for medication, I’d really prefer not to use them if I don’t have to.  Well that kind of flew out the window today.  Here is our after school conversation.

Me:  Did you have a green day?

Alex:  Yes

Me: Really?

Alex:  Yes

Long pause.

Alex:  There is a note in my backpack for you.

Me:  What does it say?

Alex:  I don’t want to tell you, it is from Mr. Lawson, the PE teacher.

Me:  Alex, tell me what it says, I’m driving.

Alex:  I punched Brooke in the eye.

Long pause.

Me:  Why?

Alex:  The note says “no reason.”

Me:  Okay, but do you know why you did it?

Alex:  The note says “no reason.”

Me:  *sigh*

Alex:  Am I going to have a consequence at home?

Me:  *sigh*

Brooke used to be his best friend.  A few weeks ago he came home and said that she called him the “j-word”.  Perplexed, I asked him what the “j-word” was and he whispered “jerk”.  I asked him why she said that and he said it was because he didn’t want to play with her at recess that day.  I haven’t heard anything about Brooke since then. 

At home he still couldn’t tell me why he did it.  He did say that she didn’t say anything to him, look at him, touch him, etc just that he felt like punching her in the eye.  When my husband got home we had a conversation with Alexander and discussed the fact that hitting is not appropriate, etc.  A while later he told me he wanted to write an apology note.  Woah!  I told him that I thought that would be a nice idea.

A few minutes later he brings me a note in his first grade scrawl that said “I’m really sorry for punching you in the eye.  Can you be my friend again?” I told him to put it in an envelope and give it to his teacher so she could give it to Brooke.  I also followed up with an email to his teacher to let her know of the note.

Alexander has been on the receiving end of bullying before.  He’s had his glasses knocked off, been kicked in the groin, had send repeatedly thrown on him etc.  All of these incidences were from different kids and these weren’t just this year.  Overall there is very little bullying at the school, I know any bullying is too much bullying but I’m also a realist.  I am sad that he acted out in that way and called the pharmacy for a refill. 

Perhaps this summer we’ll try to wean him off of the Risperdal again and see how it goes.

My Mindless Mommy Blog is one year old!  I’ve had the domain for longer than that but on 3/10/07 I created my Mutterings of a Mindless Mommy blog dedicated to my life as the mom of two children on the autism spectrum.  At the time I started the blog, I only knew I was the mom of one on the spectrum.  Since then I’ve been promoted to mom of two great spectrum kiddos! 

Here’s a look back at some of my favorite and more popular posts.  I’m going to start with March and April of 2007 as I have many favorites and I don’t want to spam them all here in one post. 

An Introduction - My first blog entry!

The Dreaded Autism Tantrum - Blogged from our hotel in San Diego after a fun day at Sea World.

Having Autism vs. Being Autistic - Two completely different statements and one may be offensive to a certain part of the autism community and the other offensive to another part of the autism community.  The power of words, truly amazing.

Autism and Terbutaline- I get visitors to this post every day from Google searches on the topic.  Not many comments but by far one of my most popular posts.

“She Should be Potty Trained” - Not my shining glory moment of educating others about autism, but some days you just have to say what is on your mind.

A Neat Little Package Called Asperger’s Syndrome - This post was made shortly after my son’s diagnosis.

My son had a follow-up visit with his opthamologist on Friday.  The outcome - an eye patch.  His vision is still getting worse and since he’s ambylopic we’re afraid that his brain is going to shut off his right eye.  Even with the glasses, he’s still over-compensating and using his left eye more.  Now he gets to wear an eye patch for three hours a day, every day, and we go back to the doc in two months.  I think this will be good for Alexander because he’s been slacking a bit on wearing his glasses (he’ll take them off for something and forget to put them on, etc).  This way he knows that this is serious business but he doesn’t have to worry about wearing the patch outside of the house.

I cannot get him to say “arrr” for me though, I’ll do it in my best pirate voice and he just giggles but refuses to say it.  I asked him if I should buy a parrot for his shoulder to which he enthusiastically responded “yes!”  I forget that rhetorical questions don’t usually work with six year-olds or Aspies.  hehe  The office gave us a package of four sample patches and recommended a company based out of Tucson, Arizona - Ortopad USA.  I ordered the patches yesterday and selected priority UPS next day shipping (as we don’t want to run out).  A representative from the company called me back and said UPS doesn’t deliver on Saturday and since I’m also in Arizona the standard priority mail shipping would likely get here by Monday.  Guess what arrived on my doorstep today?  Yup, 100 fancy boy-themed eyepatches.

As I’ve mentioned (repeatedly, I’m sure) Alexander is tactile defensive.  Thankfully the patches only irritate him a little bit.  Hopefully when we go back in two months his right eye will have made improvements and we can stop.  Until then, I have a happy little Aspergic pirate.