Weaned (No, not the baby)

This is a follow-up to my August 4 Blog post, the one about my oldest son and our Autism journey. Missed that one? Might be good to back and read it before continuing.
The medication weaning is complete! There is now only one prescription (which our local doctor is willing to prescribe) and three over-the-counter supplements/medicine to deal with. But twice a day is much better than five times a day (yes, one of his medications had to be given five times a day!) He has not regressed in any areas and even started back to school without issues. He’s still happy and sleeping well.
One major gain has been his willingness to try new foods. He’s eleven and hasn’t eaten anything green (not counting the occasional grass/weed eating over the years) since he was two years old and would have the biggest melt-down if I tried placing anything green on his plate.
This past month he’s eaten the leafy tops of broccoli stems several times, wedges of green bell peppers twice, and once allowed me to place three peas on his plate- though he asked for them to be taken away a few minutes later. Plus, he actually ate pork chops that were cooked in a crock pot! This is a kid who only ate chicken/fish/shrimp that’s breaded and crispy.
I wondering if either of the medicines we’d dropped gave him a bad taste in his mouth. Things that make you go hmm…. But he did self-limit his diet well before starting medication because part of the eating problems are sensory issues.
No luck on the piano lessons yet. Have not heard back from the two teachers I’ve contacted. On to the next plan: more networking!
(The picture is his Play-Doh art featuring the interior of Count’s Castle from Sesame Street.)

There and Back Again

Was I missed last week? Did anyone notice?
There was no wandering with me. Wonderwegian was wandering alone. But I’m going to share my journey now.
There and Back Again: An Autism Tale
My oldest son was born in July 1998. He reacted to the Hepatitis B vaccine given in the hospital and he had to be re-hospitalized within 24 hours of bringing him home. He had a low sucking reflex and was always a fussy-up-half-the-night-every-few-hours baby. But he loved to be held. Ear infections were frequent so he was on anti-biotics every few months the first year of life. At about eight months old he contracted the Roseola virus (HHV-6).
He hit all the physical milestones the first year but never slept through the night. He was never a big talker, only said “mama” and “bye-bye” and such sporadically. He’d reach for things, but not point, screaming until I figured out what he wanted.
After he was a year old he self-limited his diet to include mostly crunchy and/or beige-yellow colored foods. By the time he was two years old I was worried. He had dark circles around his eyes and wouldn’t interact with his cousins or kids at church. We were living in an older rental house so I had him tested for lead poisoning and vitamin deficiency since he was such a picky eater: negative for both. The doctor was not worried because he showed love and affection and made eye contact with me. She did prescribe an allergy medication.
During his 3-year check-up the pediatrician saw enough “red flags” to send us to a neurologist and psychologist. After going through various testing in August-September of 2001 he was labeled PDD-NOS. (9/11 for me was an autism attack.) After escaping from reality for a week by immersing myself in the first four books in the Harry Potter series I buckled down and started doing autism research on-line and read a LOT of books.
I changed his diet to the GF/CF diet in October of 2001. He only asked for milk the first day. I told him “Milk is bad for your tummy. It gives you a bad tummy and a bad head.” End of story. The nighttime screaming that had been a part of our lives since the firs year of life stopped. He still woke up every few hours but he wasn’t screaming with what I now know to be gut pain. He stopped dragging his head across the floor or rubbing it on the wall- something he’d done for a year or more.
He started preschool services through our local school system in November 2001. His only language was a few basic words like “cookie”, “home”, “mommy”, and memorized songs. He could not sit in a chair for more than a minute.
I found the NIDS (NeuroImmune Dysfunction Syndrome) yahoo list and website for Dr. Michael Goldberg in December 2001. I followed the stories of other families just starting out and listened to the inspiring stories from “old timers”. Our extended family members have immune related diseases/disorders such as fibromyalgia, arthritis, diabetes, Alzheimer’s, etc, so NIDS seemed logical.
I continued to seek more information and searched and prayed about what else to do for my son. I even went so far as to visit a local chiropractor who did chelation, but when he said he’d never do it on a child because it was too dangerous I moved on to other ideas.
We also went to an allergist who did skin prick testing on him and said since my son didn’t react to milk or mold or pollen he did not need to be on allergy medicine or restricted in his diet at all. I kept his diet GFCF but we dropped the allergy medicine.
After a rough/emotional summer vacation I decided to commit to the NIDS theory and I called to make an appointment in July 2002 (my son just turned four). I also decided to switch from GFCF to the less-restrictive NIDS (low allergy) diet. There was no regression in his behavior/speech/etc.
Our appointment with Dr. Goldberg was in October 2002. We started with an anti-fungal medication. After the die-off (worsening of symptoms) the school workers noticed improvements in focus and trying to communicate more. They were small improvements, but noticeable.
Since that initial medication, we’ve added (and rotated) anti-virals (those HHV-6 numbers from his infant year were sky-high), allergy medication, and SSRIs. Plus we did a round of IMGG for about a year in 2003-2004.
The gains were slow and steady, almost too small to notice at times. And we’ve had rough times/regression when certain medicines didn’t work for him. But within the first few years with Dr. G my son was sitting for school work for up to 20 minutes at a time, speaking in two words phrases, learning to do math, and reading.
My son has been in a regular classroom with a paraprofessional since second grade. He does still receive tutoring with a special education teacher for about an hour a day, adaptive P.E., thirty minutes a week with an OT, and also services with a speech pathologist.
I became pregnant in 2005 and followed Dr. Goldberg’s pregnancy guidelines. When Baby boy #2 was born in November 2005 I opted out of the Hepatitis B vaccine- the hospital didn’t push it when I said my older son reacted to it. We’ve followed the alternate vaccine schedule since. He has only been on medication FOUR times in his life. He’s a happy, healthy chatterbox. He’s never had sleep/night issues and he pointed on schedule for his development. He has creative play and a vivid imagination. He is the BEST therapy for his big brother.
I gave birth to a healthy baby girl last September. She’s met all milestones and just a few months ago had her first ear infection/need for medication. She’s developing above average as well for all milestones.
My oldest is going into fifth grade this year but is still two (or more) years behind academically. His weakest subject is reading comprehension. This past school year he responded better to peer tutors than the teachers/aides and doesn’t like to be shadowed- he’s becoming more independent. He loves interaction but has the expressive language (and social skills) of a two-three year old. He still does a lot of scripting, which interferes with social skills. He’s happy and is able to work at a desk for an hour at a time. MAJOR improvement in attention span over the years!
I haven’t seen any large gains over the past few years though he’s much healthier than he was. This October will mark seven years with Dr. G. Maybe it’s a seven year itch but I want to see if my guy will regress without the medicine or hold his own. His HHV-6 levels are now finally close to normal and his other immune panels have been holding steady for over a year.
The autism world is very polarized like, religion and politics, when it comes to philosophies on the right way to treat it and what causes it. I had to pray over which route to follow when researching autism/PDD/etc so part of me feels like it’d be like turning away from my testimony. I’m not second guessing our journey because I know Dr. G has helped my son and my two healthy younger children are proof to me that Dr. Goldberg’s theory is as close to the truth as possible. We’ve been blessed.
But for now I’ve decided to focus on behavioral and educational boosts. Which will take additional money/time/energy. I can’t do medical and behavioral right now- I’d be stretched too thin: mentally, financially, and physically! I’m in the process of weaning my son off medication, searching for a piano teacher, researching ABA for older kids, plus a dozen other things.
And that is why I didn’t blog last week… I was sorting this all out in my head. I’m ready to travel forward, once again.

Special Education Hoops

Monday afternoon I received a phone call from the principal at “A’s” school. It’s been a year and a half since the principal called- and that phone call was in regards to extreme behavior. Dr. Principal (yes, she has her doctorate) tells me right away that I’m on speaker phone and A’s teacher is also in the room. Double whammy.
The principal tells me about the standardized testing they are doing this week and that the children in A’s fourth grade class take their tests in the morning and he does his in the afternoon, in a separate room. (This set-up is part of his I.E.P. to allow him the best environment for testing, which usually translates to less distractions and more time.) She also says that the aide that usually works with him is assigned to a different child this week. THEN she tells me A will be sent to a “holding room” during the mornings and asks if I would be willing to just keep him home during the mornings and only send him in the afternoons this week.
I say “I suppose I could arrange to bring him later. Before lunchtime or after?”
She seems to be stumbling around her words, hearing the uncertainty in my voice, because she then tells me the room is a first grade classroom with a competent teacher… and two adults will be in the room with him. “How do you think he’d do?” in the other classroom she wants to know. I said if he was allowed to do activities he enjoys he should be fine. And then she remembers that he rides the bus and me having to bring him to school might be a hardship.
I have the idea and agree to keep him home in the mornings IF he becomes a distraction to the first grade classroom.
I sent him to school Tuesday morning with a new box of crayons and notebook, knowing he can happily draw for hours to keep himself occupied. There was no phone call or note so I assume he did fine. So, I sent another new notebook with him today.
But the longer I think about it, the term “holding room” conjures images of animals locked away. As if my child is livestock to be moved around when convenient, or inconvenient as it may turn out to be. That A’s structure/routine is not important to them since they are willing to toss him into an unfamiliar room, with no adults (or children for that matter) who understand his quirks.
Hear mommy growl under her passive facade.
It appears he won’t be getting any schooling this week, just babysitting and standardized testing. Maybe I should just keep him home and do workbooks with him here.