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)

A Guilt-Free Mother: Fantasy or Science Fiction?

I just read a book. That in itself is an accomplishment because finding time to sit and read really does not exist with a family of teenage boys. Seriously, with all that has been happening in my life, I thought it was time to read this book that a friend gave to me years ago.

The book, Guilt-Free Motherhood by Joni Hilton, is an easy read, and it offers typical, common-sense advice. However, I found that other moms simply laughed when they saw the title of the book. I have to agree. Is any mom ever guilt-free?

One friend quietly queried me, "What genre is it, fantasy or science fiction?" At first, I didn't know what she was talking about because she asked so softly. She glanced at the book. AHHH! I replied, "Both." We laughed. After a few minutes, I corrected myself. "It's a comedy." She thought that was a better description. My conclusion is that trying to be a guilt-free mother is actually all three: fantasy, science fiction, and comedy.

What other job requires relentless imagination to solve problems? What career demands unlimited patience to overcome obstacles? What profession necessitates an endless sense of humor to relinquish perfection? Motherhood entails this and so much more!

One comment in the book is worth mentioning. The author advises to let kids know that I enjoy what I do for them. Basically, if I resent giving my time and effort, it isn't a gift of love. I took this further, that this gift can also be rejected. Sometimes my kids don't want what I've done for them. That is a hard pill to swallow, especially when I've sacrificed to accomplish that task. However, that is love--a willing sacrifice for another. It's also a choice for the other person to accept it or not.

I also think that guilt is not all bad. Guilt can keep us moms on our toes. Just like I try to teach my boys that they can learn from their mistakes, so can I. Then move on. Don't dwell, but do learn.

It helps to have some room for fantasy, science fiction, and comedy in motherhood!

I Am A Frog?

Another mom of a special needs kid recently compared me to a frog. Really. She said that there is this anecdote of a frog in a pot, and I'm the frog. ?? I'm embarrassed that I had to look it up. Here is the story:

A live frog is put in a pot of cold water. The fire is turned up. Unless the frog jumps out, the frog is unknowingly cooked.

So I am the frog. I have been experiencing some heat from the fire of life, and I am aware the fire has been on. I can't jump out of the pot, as that would mean leaving my family which is not option. How do I survive this boiling pot of water?

The only conclusion is to get a heat-resistant lily pad! Now I have the challenge to figure out what that lily pad is in reality.

photo credit:jronaldlee

Angels or Hellions?

I gave birth to the sweetest, cutest kids on the Earth. They were angels, or so I thought.

They are growing up. Not so cute and sweet anymore. Hellions? They back talk. They decide when to obey and when not to. Or do they?

One of my sons who will not be named decided to try the above scenario. It did not work. My son got angry. Unfortunately, I did too.

After we both took time away, I sat my son down. We talked it out. We both apologized. Then I explained why the Good Lord put the fourth and fifth commandments so close together. When children forget about the fourth commandment, which is honor your father and mother, parents can't kill their offspring, as the fifth commandment states--you shall not kill, even though the parents might be tempted.

My son got a laugh, but he understood. Parents are human too. We can make mistakes, just like kids. The point is to keep trying our best, and learn from our mistakes. Keep going. Keep loving!

photo credit:treasureofthesea