Autism: Surviving and Thriving

Fourteen years ago my youngest 3 boys were diagnosed with autism within a 9 month span. Devastation and grieving followed. Doctors gave me little or no hope, but they didn't know me very well. I refused to believe that my boys were doomed.

My boys are now young men, adults with autism. They are thriving, but every day presents its turmoil and challenges.

My family: husband Mike, sons Ryan 23 yr, Nicholas 21 yr, and Cameron 18 yr. (Ryan and Nick have autism; Cam has recovered from autism.) Our oldest sons, Michael 34 yr and Stuart 25 yr, moved out of the house. Ryan has also moved out, and is still working towards complete independence.

Friday, June 24, 2011

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.

Thursday, June 23, 2011

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.

Saturday, June 18, 2011

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)

Thursday, June 16, 2011

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.