Chelation Leads to a Class Presentation!

It’s been three months since the boys have had their four IVs of chelation. We have seen much progress in their socialization. It’s even better when people outside of our family notice. We received an email from Nick’s biology teacher stating how well Nick did on a presentation.

Wait!

Nick gave a presentation? YEP. He spoke in front of his class. This was not a requirement. This was for extra credit. So Nick didn’t HAVE TO do this presentation. He WANTED to do this. Nick spent a week working on this project about food, specifically watermelon.

Here is what his teacher emailed us:

Hi Mr and Mrs Johnson,

I just wanted you to know that Nick did a fantastic job presenting his project today. This was over and above what was required, but it was for extra credit–as well as bringing the watermelon for the class to sample.

He works so hard in my class. I wish I had 100 more of him to teach. I am glad I have the pleasure of having your boys to teach.

Ron S.

So here’s to continued success and progress!

Two Autistic Teens Go To Homecoming Dance!

Ryan and Nick are at their high school’s Homecoming Dance. Since their chelation in July, both have been talking and conversing quite a bit. This is beyond what I had ever hoped for. Ryan is on a date, and Nick “carpooled” with a girl he knew from kindergarten. They are socially emerging!!! Quite an accomplishment.

More Improvement After Chelation: A Real Conversation

It has now been several weeks since we finished the first round of chelation IVs, and we are seeing and hearing about vast improvements in speech.

About a week ago Nick and I visited Michael, Cody’s big brother. Michael had a few friends visiting, which surprised Nick. Like most kids with autism, Nick didn’t like the unplanned visitors. I told him we could stay in a back bedroom for a while. He liked that idea. When he got hungry, Nick ventured into the kitchen to get food. While in the kitchen, Michael introduced Nick to Ted. Ted started to ask Nick a few questions on the subject of music, and Michael made sure that both Nick and Ted knew that the other played an instrument. Then Michael left.

Meanwhile, I was in the bedroom reading, and I noticed that Nick had been gone a long time. I went to the kitchen to check on him. I found him talking to Ted. I stayed and listened for about five minutes. They were talking about percussion instruments. I returned to the room to read my book. Time flew by.

“Hey, MOM.” I looked up to see Nick. “Mom, I had a long ‘conservation’, didn’t I?”

It took me a moment to understand. “Conversation?” I asked. Nick nodded.

I didn’t know how much time had lapsed, but enough for me to read several chapters. I asked Nick, “You’ve been talking all this time?”

He beamed, “YES! I did good, didn’t I?” I agreed.

The next day I found out how long that conversation had been: over 45 minutes. My Nick talked with Ted for almost an hour. Michael said that he heard Ted and Nick talk about music, school, girls, and sports. I was shocked that Nick could talk that long!

There was a time not too long ago that Nick could talk with someone for about five minutes, and then Nick would have to lie down and rest because he was mentally and physically exhausted. Talking for Nick was like running a marathon to an athlete. However, this time Nick was not tired, and he was a happy kid!

Nick had a real conversation!

Chelation IS Working!!!

The boys have undergone their four chelation IVs. The last of the IVs were given a week apart. During the last visit, I was given a “lab kit” to collect urine for each boy, so we’d know what was actually being drawn out of the boys. We are waiting for those results.

July 26, 2011
Second round of IVs. The boys complained that the IV solution was cold. That was it.

July 28, 2011
My sister called to tell me how her husband had noticed how well Nick could communicate. Her husband relayed how he could see Nick ascertaining information and forming thoughts in his head. He could see Nick thinking. Nick made a statement. Then Nick asked questions. Nick spoke clearly and slowly. My brother-in-law answered Nick’s question. A few more questions followed. The process was SLOW, but my brother-in-law was amazed to watch the process. I suppose it was like watching the gears work in a huge clock. I was so happy to hear that Nick spoke clearly, and he was on topic. Too often, Nick swallows his words, and his topics are random. PROGRESS!

Aug 2, 2011
Third round of IVs. The boys drank a ton of water all day. No behavior issues. No health issues.

I’ve noticed that Ryan is talking much more. Of course, he talks about what interests him, but he’s talking. Incessantly. Ryan? It was quite a joy. My dad also noticed that Ryan was talking more. It was really weird hearing Ryan’s voice so much.

Aug 9, 2011
Fourth round of IVs. The boys vied to be first to get the IV. Nothing else to report.

Aug 12, 2011
About Nick:

Today he had an issue re PE. The good stuff:
1.) Nick was able to articulate his problem. (This is usually the first hurdle–knowing what the problem is!)
2.) He was patient enough for an hour for me to try to solve it. With every unsuccessful attempt, Nick remained composed. I finally found someone who was willing to help, but we still did not have resolution.
3.) Nick was willing to go to class with only the potential of a resolution. (WOW)
4.) Before he went to class, he was able to tell me what he needed to do and in the correct order. He didn’t speak as slowly as he normally does when he was telling me this list. It was as if he could think AND talk simultaneously. He spoke clearly, using perfect English. (Double Wow)
Usually, Nick lets the anxiety build until he can’t function. He literally can’t think, speak, breath… THIS was just the first visit. Later in the day, he actually was problem-solving by himself.

August 18, 2011
Stuart missed one IV, so he received his last IV this past Mon, which was a week later than the other boys. He has been sick since he received his IV on Mon. He’s had a fever of 101.5. He ran his system down by working too many graveyard shifts. I don’t recommend doing the chelation if the person is not well! I am thankful that the other boys were done last week, and they are doing fine. I am happy!

Overall, I think the chelation has helped the boys. I still want to see what may result over a longer period of time. I am not really sure what to look for, but what I’ve seen so far is very encouraging. Very Positive!!! My boys with autism are talking!

Is Chelation Working?

We started chelation on June 28, 2011. There are different methods to chelate: sprays, pills,and IVs. The IVS are the most expensive, but they are also most efficient, getting into the deeper tissue quicker. We chose this method because we wanted to get as much of the toxins out as we could during summer. Also, if there were any side effects, we’d be able to monitor the kids 24/7. The office staff assured us that there was nothing to worry about. I smiled, but I screamed in my head, “THESE ARE MY KIDS. There’s plenty to worry about, like their well-being!!!”

This was to be the first of four IVs given. We spend two weeks building the boys’ systems with probiotics and vitamins as well as getting rid of the yeast in their digestive tract.

Here is a brief description as to their behaviors after the initial IVS:

June 28, 2011
Overall, I’m encouraged. The boys are acting normally. No aches, pains, behavioral issues, etc. Initially, their arms hurt. They all consumed a ton of water yesterday and today. They feel fine. I am relieved. The nurse said that if there were any negative reaction, it’d be fairly immediate. All is well. Cameron has swelling at the injection site, but ice will take care of it.

July 3, 2011As far as Ryan and N goick, they had headaches for a few hours the day after. Cam and Stuart had no headache. It’s been 5 days, and I’d never guess that they underwent a procedure. So far so good, ie no behavior issues or serious physical ailments.

July 8, 2011 Today I told the boys we were going to visit a family. The boys protested as they don’t like to socialize much. I told them that we’d stay for 30 minutes. We ended up staying 2 hours plus. After the initial ten minutes of discomfort, things started clicking. Ryan talked with a girl. Nick and Cam had fun with the rest of the gang in the pool. When visiting people that the boys don’t know, they are usually isolated. Nick is quiet, and Ryan is stoic. Today they were having fun WITH peers. I didn’t know my own kids. They are talking!!!

It’s just mind boggling. I’m not sure what to expect with each day/visit, but I am encouraged so far!

photo credit: nukeit1 from flickr

Overwhelmed: Understatement Part 2


In part 1 I outlined what my husband and I did to treat our autistic boys. Many years have passed since their diagnosis, and we still find ourselves researching potential therapies and treatments. Our boys have progressed to a point that many think that their autism is mild. I suppose that is good. However, my boys have autism, full blown autism. It is not mild. Their minds still function as autistic. They have learned how to regulate themselves in public. As a family, WE have undergone many therapies. Some are “normal”. Some are “alternative”. The point is that our boys have progressed, but not due to any ONE treatment. We also continue to hope for more progress; thus, the search continues.

Over the summer we decided to chelate. This has been nine years in the works. We first started testing for toxins that long ago. I was startled when the results included arsenic, mercury, lead, aluminum, titanium, and uranium. There were many more metals, but THOSE metals registered. I knew from my biology and physiology classes in high school that it was not good for those metals to be in a human body.

ARSENIC? I feared the police coming to my door to haul me off for poisoning my kids. Where was arsenic coming from? Where was any of it? We had moved into a new house just a year prior. The schools were also newly built. It was really hard to comprehend, and now we were told that those metals needed to come out.

Chelation. I had never heard of it. In fact, I tried to research keylation, as I didn’t even know how to spell it. Very frustrating. Once I found the word, I didn’t like what I found. Research showed me a very controversial, dangerous protocol. Liver and kidney damage. Death. Just a few concerns.

As the years have passed, new methods for chelation have been developed. We have continued to test and monitor the toxins in our boys as well. This past set of tests indicated high levels of lead, arsenic, and cadmium in all of our boys. We trusted out doctor’s recommendation to chelate as we have done everything else, and the boys’ bodies have not been able to eliminate the toxins. Unfortunately, this is also very costly.

We chose to do the IVs, rather than pills or sprays. Over several weeks the boys have received the IVs. I have kept a log of notes, but I am still waiting to see vast improvements. I’m still holding judgment.

photo credit:Mykl Roventine

The Battle Ends: Summer School Results

Summer school ended. Ryan and Nick both earned As in the computer class. Wish it were that simple!

The class was very frustrating for the boys and us. This class consumed our summer vacation time. We spent hours with the boys and their assignments. Ryan caught on fairly well, but Nick was extremely frustrated.

My husband and I shared Nick’s frustration, but ours was directed at the teacher and administration. We met with the teacher and principal or vice principal several times. Our main concern was the content of the class, not the speed of the class. The course catalog described an introduction to the computer. Instead, this class demanded a creation of a small business, which entailed business plans and goals and much more. I won’t go into the details here, but the frustration was really due to the administration focusing on the speed of the class, not content.

Before I had signed up the boys for this class, I had talked with numerous people at my boys’ schools. I talked with counselors, psychologists, case managers, and teachers. They all agreed that this beginner computer class would help my kids throughout high school. It would also be a needed life skill. All were on board.

My husband conveyed this to the summer school hierarchy. The vice principal of the regular high school was called. (I assume this as we never saw her on the summer school campus.) She told the summer school principal that we never spoke with her.

I felt like I was thrown under the bus. After that call, the summer school administration refused to work with us, even though we had an IEP. They simply stated that “this is what we’re going to do.” We had no more say.

We could have hired an attorney and fought it. However, the energy and money to do so would have been more than we could generate. Maybe the school counted on that. My husband and I decided to spend that time and energy teaching the boys ourselves. THAT is why the boys earned As in that class.

This makes me rethink the home schooling vs public schooling. Parents always remain the primary educators, no matter what!

Feeling Neglected?

Dear Blog,
It’s been over a month since I’ve written a post. I’m sorry. It’s not that I don’t think about you. In fact, it’s quite the opposite. I think of you every night, specifically when I can’t sleep. All sorts of notes to myself are written in my mind to write about this or that. Unfortunately, come morning, I’m tired, and the duties of wife and mother call, let alone the doctor on the land line and the therapist on the cell. By the time I have a few minutes to write, I forget all the thoughts from the night before.

Life also has been BUSY. I know everyone has a busy life. It’s who we are. Please know that I am not neglecting you on purpose. Sometimes I’ll even think that I need to write a really good entry, so I’ll do it later when I’ll be undisturbed. Again, unfortunately, that time never comes.

So hold on, Dear Blog, and I’ll resume writing in a bit… maybe tonight. (No irony there!)

Yea, we’ll see!
Sheryl

Overwhelmed: Understatement Part I

When my boys were first diagnosed with autism, I had no clue what autism was. I just knew it was not good. I remember the doctor telling me, “There is no cure.” Of course, we first did what mainstream medicine dictated: drugs. For two years our boys were on prescribed drugs. The effect was simple: My boys were drugged up. They did not progress, and the symptoms did not diminish. Also, the drugs were suppose to treat symptoms, not the cause.

It was by accident that we took the boys off their meds. Mike and I thought that the other spouse was giving each boy his med. After several days, we realized that we had run out, and the boys had not received medication during that time. We noticed that there was absolutely NO difference in their behaviors, moods, social skills, etc. We decided not to continue with the meds, and do our own research.

I attended conventions and read books. New vocabulary words entered my head. Social stories, NT, non verbal, therapies, chelation just to name a few. Social story? NT? Obviously, the presenters at these conventions thought that everyone was knowledgeable about abbreviations and the general lingo. I was a newbie. Bummer. I was lost.

What made matters worse was, back in those days, I had just received a computer. I had no clue how to use it, so I started my research via the library. It took a LONG time to get the hang of reading and researching on the computer. I also did not have a lot of time to read. I had autistic boys who demanded my attention ALL THE TIME. And I did work. I was self employed, teaching piano. My husband also worked full time and attended school full time. I was crazy, but that’s another story.

I found bits and pieces of information, and we tried what seemed to be easy steps. My husband was with me every step of the way. I had no idea that I was embarking on a prolonged hunt. Now I understand why the puzzle piece is the emblem of autism. There are so many facets to figure out. There are so many variables to consider in the treatment of autism. Back then, there just was not much to find about treating autism; certainly not in one place.

Here is a current list of treatments from Generation Rescue, which did not exist when I first started my search. Seven years after starting my search, I see that I have done just about everything on this list. Only a few remain untouched, and those will be explored in the next few days.

From Generation Rescue:

The following is a list of biomedical treatments to explore with a physician in order to help heal the body:

  1. Follow the gluten-free, casein-free, soy-free diet and remove other food allergens.
  2. Help the gut heal with: antifungals, antivirals, digestive enzymes, and prebiotics and probiotics.
  3. Increase nutrient levels through vitamin and mineral supplements including: quality multi-vitamins and multi-minerals, high-dose B6, magnesium, fish oils and fatty acids, amino acids, melatonin, sulfation, glutathione, and natural detoxifiers.
  4. Remove metals and toxins from the body through: anti-yeast protocols, methylation, chelation, Mb12, Valtrex, and homeopathy.

When applied in conjunction with biomedical treatment, certain traditional therapies have been shown to support progress for individuals with autism spectrum disorders.
Traditional Therapies: Early Intervention Programs, Speech Therapy, Occupational Therapy, Physical Therapy, Social Skills Therapy, Relationship Development Integration, Sensory Integration, Hippotherapy, Music Therapy, Neurofeedback, EEG, Auditory Integration Therapy, and Craniosacral Therapy.

Our 21st Anniversary: For Better or For Worse


Exactly 21 years ago, Mike and I took our wedding vows. We were both 25. While we knew that these vows were serious, we never could have imagined what they entailed. I don’t think anyone truly “understands” what marriage is, when stating those vows.

Mike and I had five years of marriage before our life with autism began. We then lived through six years of dealing with the symptoms before any of our children were diagnosed with autism. Then within six months, our youngest three were diagnosed with autism. Rather devastating.

Eight months later I was pregnant. I was scared that this next child would also have autism. How much could a mother endure? How much could the parents endure? The marriage? Unfortunately, I miscarried. Again the same questions. I found that as I grieved for our miscarried child, I also grieved for our other kids. Their lives were changed. So was ours.

One of the vows we took included the “for better or for worse”. Autism fits both categories. Never did we think that our children would be diagnosed with disabilities. No one prepared us for the financial, emotional, and spiritual burden that specials needs kids bring. We learned via “on the job training”.

We have gone through all the ups and downs together. The key has been acceptance. Simple as that sounds; marriage is about acceptance. We accept each other as we are; we accept our kids for who they are. We help each other to live to our greatest potential; we help our kids to live to their greatest potential as well.

To express the self sacrifice on both parts of wife and husband, well, it is impossible. It is just what we do. Our kids have demanded more and more from us, and we give and give. Sometimes, I don’t think we have more strength, yet somehow it comes. I give much credit to the power of prayer that we’ve endured autism. Ultimately, it is because we love each other, that we give–to each other and our kids.

Here’s to a Happy 21st Anniversary and many more.