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.

The Battle Begins: Trust The Parent?

The first Monday morning of summer school I went to the school early to talk with the computer teacher, Mr. L. I informed him that my two boys had autism and IEPs (Individual Educational Plans-- big name for the educational goals that teachers and parents set for the child). The teacher said that he would get everything from the computer. I offered my cell phone, and he replied that was on the computer too.

The first week of summer school passed. Nick was very frustrated. He had a D+. If anyone knows Nick, he or she would know something was terribly wrong. This is the child that is the perfectionist. Back in March he had one A+, three As, and one A-. He was NOT happy because he did not have straight As. The A- was not good enough. The next report card showed five As. Nick was happy.

So this D+ was not good.

Ryan had a B. Ryan is the one who can wait til the Earth fades before pulling out a book to study.

I tried to figure this out. I asked the boys several questions. I received some conflicting answers, but what was clear was that the special accommodations that were listed on the IEPs were not being implemented. Nick and Ryan are suppose to get extended time on assignments and tests. That was not happening. Nick needed that time.

The following Monday morning my husband and I showed up with copies of the accommodation pages from the boys' IEPs. Mr. L refused to accept the pages. He said that, since these papers did not come from the administrative office, he could not accept them. There were legalities involved.

I was stunned. NEVER in my life had a teacher refused these papers. In fact, teachers usually expressed gratitude, "Thanks. It usually takes the office days or weeks to get these to us."

Mr. L asked me if I understood. The Mama Bear in me challenged him, "No." I took a breath. "No, I don't. I've never had a teacher question my integrity before." I had to restrain myself...

My husband and I walked to the administration office, and we talked with the principal. She said, "You need to understand that we have 1300 students here. It's going to take time." I bit my tongue.

The next day I made an appointment with the vice principal and the teacher. The vice principal, Mr. Z, was a teacher that knew from Nick's junior high. When we arrived at the classroom, Mr. L was busy at the computer. We sat down. Mr. Z asked if I brought copies of the boys' IEP so he could read them. I laughed. Here is an administrator asking ME, the untrustworthy parent, if I had copies. He couldn't get copies from the computer in the administration office? He was going to TRUST ME, the parent? How daring!

The meeting was successful, but I couldn't get over the irony of the teacher vs the vice principal. One refusing the IEP from me, and the other wanting a copy from me.

Just another day in the life of being an advocate for my kids in the school system!

photo credit:TI CC-40 (Set: 30)

Summer School Adventure

For the last two weeks my teens with autism have been in summer school. It's a four hour course, four days a week, for four weeks. It's the equivalent of a semester of school. I asked Ryan and Nick if they wanted to try this class. My hope is that their regular school year will be less stressful by taking a required class over the summer. They will be able to focus on one class, which is much easier for kids with autism to do.

I also have an ulterior motive. Ryan and Nick are very different, and I hope that their skills will benefit each other. For example, Nick is a perfectionist. He will study until he knows it, even if he fills himself with anxiety. No breaks. This sounds like a mother's dream; he has an incredible work ethic. However, he gets chest pains, shortness of breath, and headaches. Not good.

On the other hand, Ryan is laid back when it comes to studying. There is always tomorrow, even if that final is tomorrow. Ryan has little concept of time. If there is a worksheet to complete, he can do that. There is a definitive beginning and end. However, studying? NOT going to happen unless he is prompted by me.

Another idea is that Nick, who is very social, will enable or inspire Ryan to talk. Nick has a difficult time talking, but he's not afraid to try. Ryan can talk quite well, but he prefers to not engage in conversation. Nick will self-advocate; Ryan will not.

We'll see how the two compliment or compete with each other.

Photo creditPargon's photostream (408)