Monday, March 2, 2009

Our Journey to this Point

Do you ever stop and think back on your life and wonder ... "How did I get to this point?" What you are really asking yourself is "What events, people, actions led me to this place in my life journey?"

I have been reflecting on just this recently and found that before I reached any conclusions, I was more amazed that I finally have the time and energy to reflect on anything at all. It wasn't that long ago that I couldn't even manage to reflect on how I survived a single day, let alone how I could improve on my parenting, marriage, or even self. Wow! How life has changed - for the better!

About four years ago, we had just moved from NC to TN. We were living with my mother-in-law and struggling to get settled. We hadn't found a pediatrician for our boys yet, so they had gotten behind on their immunizations. My innate mother-guilt kicked in and I took the boys to the local health department for their shots. The health care professional (I don't know if it was a doctor or nurse) came in, gave them their shots and left. I was so preoccupied with keeping the boys as comfortable as possible that I barely registered what was going on. When we went to check out, the employee looked at their forms and said, "I didn't know they could give them that many shots in one day." Once in the car, I looked at the forms and realized that Jason (our oldest) had been given 5 shots and Jeffrey had been given 7 shots IN ONE DAY! Life changed from that moment on.

By the next day, our once happy-go-lucky youngest (1 1/2 years old at the time), Jeffrey, began to wander aimlessly around the house. He no longer looked at anyone when they spoke to him and had no more interest in any of his toys. He would simply pick up a toy, walk around in circles for awhile, and then randomly drop it and continue the wandering. Before the doctors visit, he had a vocabulary of between 18 and 20 words. After the visit, he had NO words. (It would actually be almost a year before we would hear his voice at all - well, other than for screaming.)

Jason was slower to transform. He simply became withdrawn and much more easily frustrated. I am sad to say it, but Jason's self-induced solitude was a blessing at that time. Terry and I were so overwhelmed by Jeffrey's regression and new habit of biting his hand whenever he felt a new emotion (sad, happy, excited, worried, you name it) that Jason got kind of lost in the survival shuffle.

Thanks for the Internet, I found that Jeffrey had all of the classic symptoms of autism. So, it was no surprise when he was diagnosed a few months later. It wasn't until about a year later that Jason received his diagnosis.

To anyone who has read up on autism, this story is all too common. I hope that anyone reading this who has doubted that vaccines have an impact on the development (or trigger) of autism will rethink their position.

Jeffrey began an intensive schedule of therapy. He attended Occupation Therapy two times a week (to work on sensory processing and feeding issues), Speech Therapy two times a week, Play Therapy three times a week (to work on actually learning to play, speak, everything), Special Needs Preschool two times a week, and group Occupational Therapy once a week (to work on social skills). Most of these were out of the home, so we averaged one hour of driving time each way for each therapy. Our lives were consumed by therapy!

On top of that, we immediately put Jeffrey on a Gluten-Free/Casein-Free (GF-CF)/Yeast-Free diet. This means not eating any foods that contained gluten (wheat, bran, oats, and some more), casein (the milk protein), or yeast. This diet has been found to make dramatic improvements in most autistic children due to the inability of their bodies to process these things. Jeffrey made great improvements while on this diet.

After almost a year on this diet, I learned of the Specific Carbohydrate Diet and soon both boys were on this strict regimine. The boys were to have no grain (wheat, rice, potato, bran, corn, etc.), no sugar (or artificial sweeteners), and very limited dairy products (no milk and only specific cheeses due to the diminished lactose and casein remaining in them after processing). The changes that occured while following this diet were extraordinary; however, it was very expensive to adhere to. So, after over year on the SCD, we put the boys back on a "regular diet."

Because Jason was 3 at the time, he no longer qualified for the Early Intervention therapies that Jeffrey was receiving and instead attended a blended (special needs and typical students) preschool at one of our local public schools. We thought that this would be great for Jason and were really excited when he started school there. This experiene did not prove to be beneficial for Jason. In fact, it was quite damaging to him. I will only say that his teacher was very verbally abusive to the students (as I witnessed myself) and Jason came home with adult hand-sized bruises on various parts of his body more than twice. When I confronted the teacher about this, she said that I must've done it myself. (Which of course it didn't.) When it happened again, I told the principal and was simply told that his teacher would never do that to a child. I know - I should have taken this further, but in the hell that was our life at this time, I didn't have the energy or where-with-all to continue this fight.

Well, that is enough reflection for today. Sorry about the long posts ... apparently I have a lot in my mind that I want to share.

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