Tuesday, March 17, 2009

My New Hobby

I have mixed feelings about labels. I mean, they can be helpful, right? If I have a medical condition then the correct label/diagnosis is vital to my treatment and recovery. The problem comes in when labels are used as crutches instead of stepping stones. If I excuse an unacceptable behavior because of a label then I am doing a disservice to everyone. If, instead, I use that label to aid and define my research and I am able to find the proper treatment, then I have helped all of those involved.

Some people were against me going to the appointment last week. In their minds, I am doing fine raising my son, so all a label is going to do is serve as a crutch instead of a help. However, I have learned a lot from my aunt who has 4 children with full blown cases of Fragile X. My aunt knows how to push her kids to reach their potential and yet not expect more than what they are capable of doing. Even before our appointment last week this was the approach that I took with Tyler. My aunt has done this through knowledge of her children along with a lot of knowledge of FX.

One of my goals with the appointment last week was to figure out what path to take in helping Tyler reach his potential. So this past week I have found that I have a new hobby: researching Autism and how it is effecting my son. Autism is growing at alarming rates for reasons that are debated in many circles. I believe that it is a mixture of things. I don't believe that vaccines are the lone cause since I know more than one family with a child with autism that has never had a vaccine. However, I do believe that the vaccines can cause, or at the very least, tip the scale in many kids. I have another friend whose son still has the live measles virus living in his body and it is directly effecting his brain. This can obviously only be linked to his MMR vaccine.

In some of my research during the last week I was directed to the DAN! website (Defeat Autism Now!). In many ways this website has given me hope. Although it is a long road ahead no matter what path we choose, this path may lead to answers. Are there toxins in Tyler's body? Can they be flushed out? Is he sensitive to certain things in the environment? Is he sensitive or allergic to any type of food?

The Autism Spectrum is so broad and so wide that there is no easy way to go. Each child is different in what effects them, good or bad. In one family a gluten free/casein free diet did amazing things for one child, but it didn't do a thing for the other child. I'll admit right now that I would like it if that diet does nothing for Tyler since I don't want to have to go to that extreme. But if it helps then I cannot deny the benefits from him.

We leave for a trip home in a week and a half so I won't be trying anything until we get back. After we get back I'll be slowing trying some different diets and supplements to see if anything helps. I plan on getting guidance from our chiropractor or another doctor listed on the DAN! website.

For most of Tyler's life I have felt that if I just had the right keys then I could unlock his brain. Now I pray that I can just find the right key (or combination of many keys).

Sunday, March 15, 2009


I doubt that anyone is still here to read my blog, but I thought that I would update anyway. I almost deleted the blog, but now I think I have something to talk about.

Last Tuesday my oldest son (6) was diagnosed with PDD. Before you say it, yes, I know that this is not technically a diagnosis. In about a week and a half we'll be getting the papers from the helpful (ahem) doctor that we met with last week. My guess is that he'll either be diagnosed with "High-Functioning Autism" or "PDD-NOS".

Some of you may be wondering what has taken us so long to get a diagnosis. Many kids have a diagnosis and get early intervention before age two. Perhaps it was denial on my part. Most everything that my son did I attributed to family genetics. Late talker? I didn't talk until I was three. Sensitive hearing? My brother (22) still has sensitive hearing. Likes things in his specific order? He's the oldest child, therefore Type A. Lack of social skills? We hung around people with very verbal children that didn't like to play with DS because he didn't talk. So he just played by himself. At one point we determined that his lack of comprehension had much more to do with our parenting than him. So we tightened up and things did improve a bit. For example, if I had told him to do something, he would normally act as though he hadn't heard me. But if I said, "Go get your shoes, yes ma'am?" then he would say "Yes ma'am" and then go get his shoes.

Early on I did look at autism as a possibility, but he only fit the communication category, so I decided that it couldn't be autism. I mean, he didn't rock or do other self-stimulating activities, his motor skills were right on, and at age two he could put together a fairly complex wooden puzzle of the US.

So we waited

About this time last year I decided that something really wasn't right. So the first thing I did was get the doctor to order the blood test for Fragile X. Fragile X runs in my family so I wanted to rule that out. His repeats came back in the normal range. After that we went to the local public school to get an IEP done for him. This was a bit hard for me since I've always been determined to homeschool my kids. But our insurance wouldn't cover private speech therapy if we didn't have an IEP on file. So we did the IEP then enrolled him in the preschool program where he attended for 4 days a week but only got group ST once a week. As soon as our insurance approved it we pulled him out and put him in private ST. During the IEP they determined that the only service that he qualified for was speech, but his speech pathologist recommended that he be evaluated for OT since he had a hard time crossing the midline.

At this point we moved over 1600 miles and had to start all over again with the school system and a new insurance region. Once everything finally went through he was approved for ST twice a week and OT twice a month. At this point I also started taking him to the chiropractor 1-2 times a week. The chiropractor put him on Tuna Omega-3 along with some other supplements. I saw immediate improvement in his concentration after starting the Omega-3. After several months of going to the chiropractor he started being dry at night! I was so thrilled! This problem runs in my family so I was never concerned about it, but to stop at age 6 was clear that it was directly connected to chiropractic care.

All this time I was working with the assumption that he had Auditory Processing Disorder. In my mind, it seemed to fit. His speech teacher even recommended that he be evaluated for it. So we tried to get that referral put in, but since our PCM didn't know how to put the referral in she referred us to a Developmental Pediatrician. We live in a fairly large military area yet there is only one DP in the area. So we went to a Pedatric Psycologist instead. Before the appointment I was terrified because I knew what the doctor was going to say. I was prepared to diagree with her.

Sure enough, we walked out of there with a PDD diagnosis. I was frustrated. DH was ticked. We kept it together and went home with a black cloud over our heads. Later DS had a ST appointment so DH took him to that. He told the therapist about the appointment and she, in a very nice way, said, "I figured as much". This is where DH started accepting that the diagnosis might be correct. I had already done the research and knew that this was a possibility. I was just not wanting to believe it.

This is long, so I'll continue later....