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 We believe in respecting the diversity of the human mind and discriminatory writing or hatred of any kind will not be published.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.

This evening while going through some files I came across Alexander’s science journal from 1st grade.  I don’t know why I hadn’t seen it before.  The pages were tabbed by subject with weather being at the end.  I decided to look at the weather section first and instead of finding a weather entry, I found a general journal entry.  The entry was from 5/15/2008.

Yesterday I had a Dr. apointment. I had it because I was mad during my sleep. Then we went to get a blood test to find out what was wrong. I had to go see Dr. Cook. He has to decide to go to the hospital so they can tape me to see me do it.

This brought a tear to my eye. Alexander usually draws pictures as a series of events. The first picture is obviously the needle getting ready to go in, the second is the blood and the last is the bandage that was placed on his arm.

Alexander has always articulated himself so much better in the written word than the spoken word. He always writes me notes or letters instead of talking to me. Alexander doesn’t remember the episodes where he gets mad while sleeping as they are a type of complex partial seizure which comes with amnesia of the event.

I remember the day of the blood draw rather well. Our pediatrician referred us to have the blood test to rule out thyroid issues. When Alexander heard that, he immediately hid under the bed in the exam room. I explained to Alexander that the blood test is at another facility (he has had it done before). I had to coax him out of the car and across the walkway.

He sat quietly with me and when the nurse called his name, he started to walk with me. About halfway there he said “uh uh” and turned around and bolted out the door and nearly into the road before I got to him. I carried him in and he was just screaming and screaming. I sat down and placed him on my lap and the two phlebotomists started to talk to him in such a calming voice. He was able to calm down and let us open his arm up for the butterfly needle. He got a little upset but as soon as the needle was in - he said “oh” and that was it.

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.

I saw this on Memoirs of a Chaotic Mommy and wanted to help spread the word!

Remember your summer vacations? Doesn’t every kid deserve that kind of fun? We have over 200 children scheduled for Fresh Air trips this summer and need your help to host or find hosts!

The Fresh Air Fund has provided free summer vacations to New York City children from disadvantaged communities since 1877. This is your summer to help!

The end of July is growing closer and we still have 200 children who need to be placed with host families for this August. Unless all prospective host families are screened and vetted by the end of July these 200 children may miss out on an invaluable experience.

Please host a child or help us get the word out that we need folks who can welcome a child from the city into their homes next month. One last thing that is actually very important. We are looking for families who want to extend an invitation to a 9-12 year old. We really need more families who want older children and boys.

Please Email Angie, angie@freshair.org, immediately and she’ll speed you through the process! Or, you can call us at 1-800-367-0003 (212.897.8900) — ask for Angie. If you want to help but don’t live in these areas - BLOG about this program, tell your friends, recommend someone, or DONATE.

I couldn’t go without pink for along and have just found a fantabulous Wordpress Theme.  I hope the bright pink doesn’t bug you! 

On June 13 I explored the relationship between Autism and Epilepsy as I prepared for my son’s appointment with a neurologist.  We had our official appointment with the neurologist on July 1st and the appointment went very well.  The doctor was fantastic and listened to all of my concerns and then proceeded to do a basic neurological exam on Alexander.

Alexander was in one of his less-social moods.  At one point during the exam, the neurologist handed my son a piece of paper and asked him to read the paper.  After a bit of silence, the neurologist pointed to one of the lines on the paper and said “read that line” to which Alexander replied “I already did.”  I chuckled as I realized that Alexander was reading in his head.  I told Alexander that the doctor wanted to hear him read to which Alexander proclaimed “I read in my head.”  He flat-out refused to read aloud.  The doctor was great and didn’t push it.

The doctor said that the episodes that Alexander is having are all complex partial seizures.  According to the Epilepsy Foundation website:

“During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn’t know what he or she is doing; and cannot remember afterwards what happened during the seizure.”

This helps to explain some of Alexander’s odd meltdowns.  These aren’t your typical “autism tantrums” but instead a much shorter but very odd meltdown of which Alexander has no recollection.  The doctor said that this might also explain his sleepwalking, night terrors and frequent nightmares.  Alexander will have nightmares four or five nights a week on average.  I know that nightmares are common in childhood, but four or five nights a week is just not typical.

Alexander started on a medicine called Keppra which is supposed to work very will with these types of seizures.  I have only noticed two obvious seizures in the first ten days of the medicine.  He is only having nightmares three or four nights a week now as well.  I haven’t seen him sleepwalking (which he usually does a couple of times a week) and no night terrors. 

The only downside is Keppra can come with some behavioral side effects - someone coined the term Kepprage to describe these tiresome side effects.  Alexander is definitely a bit grouchier than normal but so far nothing all out rage-like.  Hopefully they side effects will ramp down once he reaches his therapeutic dose in a couple of weeks.

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’?