Success!

Once upon a time there was a little boy named Tyler. Tyler was a seemingly normal developing child. The only thing his mom noticed was that he had very sensitive hearing. When he was 3 he went to an air show where he coped with the very loud noise by going to sleep to shut it all out.

After that air show Tyler would run for cover anytime he heard an airplane. Since he lived next to a flight line you can imagine the challenge. He also couldn't stand firework shows and would block them out by closing his eyes and burying his face in his mom's shoulder. He wouldn't cover his ears...just his eyes.

When he was 5 his parents decided to skip the big show and instead do some little things at home. They did go to a festival in the afternoon where someone decided to shoot the canon. The family had to leave immediately due to Tyler's anxiety level. That evening his dad pulled out the ear protection for Tyler while the family enjoyed some small, but loud exploding things. Tyler loved it.

Now Tyler is 6. His mom, wanting to beat the public crowds, went to a nearby AFB on the DOD day for the USAF Thunderbird show. This time she went armed with ear protection. The first time Tyler covered his ears due to the noise she brought them out and Tyler immediately put them on.
After a while Tyler was having a great time! When it got really loud he did tend to put his hands up too, but this may have been more of a habit than anything else. He would also take off the headset when the planes were not flying.
At one point he was so involved at watching (with some cool binoculars from our friends) that he didn't even seem to notice the noise! This picture was taken while planes were flying and he was between two speakers that caused the announcer to be jumbled noise instead on intelligible words.
Most people loved the show that day. Tyler's mom was beaming with the progress that her son has made.

New Plan

Recently it seems like Tyler has plateaued in his development. He had been steadily moving forward, but lately it has stopped and even seemed to go backwards a bit. I've even seen a few extra SI things happening. Things that I never noticed before now. I've been wondering lately if chiropractic care has done all that's it's going to do for the moment. I've also been somewhat questioning myself in going to a chiropractor who is not used to working with kids like Tyler. Maybe we should have tried to find someone who specializes in this kind of thing. Our chiropractor is great, but I tend to think that he has not been sure how to proceed at times and is too busy to spend a great deal of time searching it out.

About a month ago I had the opportunity to hear Dianne Craft speak on The Struggling Learner. Dianne covers many different types of learners on many different sides of the learning scale. She focuses on the smart kids who have to work extra hard. She focuses quite a bit on nutrition, but also goes beyond the basics and looks into our body chemistry. She has found that nearly all the kids she sees have, at one point in their lives, had large amounts of antibiotics. (insert her disclaimer that antibiotics have saved many lives, but we need to be aware of what it can do to the gut) She has laid out a 3 month program that kills yeast overgrowth, replaces it with good bacteria, then adds in large amounts of fish oil to help the brain. I learned that 95% of serotonin is produced in the gut. Lack of serotonin makes it very difficult for children to concentrate and relax. Tyler has many of the physical symptoms of low fatty acids. Everything that Dianne made sense and seemed to tie everything together that I've been reading and hearing for the past 2 years.

Here's the thing. When the psychologist evaluated Tyler there were many things that came out that seemed to be more genetics than anything else. At least that's the way I saw it, but to her it just tied everything together. Here's what I believe. Tyler takes after his dad and his uncle (my brother) in many things. Very organized. Sensitive hearing. Prefers to play alone. Very detailed oriented. None of these strike me as anything except things that I've seen all of my life. However, I also believe that there is something else that plugging into these traits and making it look like autism. So, in theory, remove that something and we'll have a child that is a mix of two boys in one.

Maybe I'm just in denial. It's possible. Yet, I found a blog the other day that is entitled, "Hoping, not Coping". That's how I see it. Finding the answer.

I've also read a bit on the Gluten Free/Casein Free diet and how that has helped many children. I have one friend that saw dramatic improvements in her son after putting him on this diet. I have another friend that saw the diet help one of her children and not do a thing for the other. I have hesitated about GF/CF because it overwhelms me. I had heard that it is best to only start one at a time that way you know which one is helping.

Having said all of this is the background for the next three months of our lives. We will be placing Tyler on a casein free diet in conjunction with following Dianne Craft's plan to rid his body of excess yeast while adding in fatty acid. After three months of that we'll evaluate on whether or not we want to add gluten free into his life. It takes the body 6 weeks to rid itself of casein but 6 months to rid itself of gluten. Taking out gluten seems like such a daunting task that I'm glad to have a few months to get ready for it!

Maybe it will help. Maybe it won't. But in the meantime I don't think that we'll be losing anything. If nothing else we'll have more answers and know what didn't work. Hopefully we'll see improvement and know what did work.

Just for Fun

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).

Diagnosis

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....

Update

The CPSC released a clarification today on the law that is about to go into effect:

The new law requires that domestic manufacturers and importers certify that children’s products made after February 10 meet all the new safety standards and the lead ban. Sellers of used children’s products, such as thrift stores and consignment stores, are not required to certify that those products meet the new lead limits, phthalates standard or new toy standards.

The new safety law does not require resellers to test children’s products in inventory for compliance with the lead limit before they are sold. However, resellers cannot sell children’s products that exceed the lead limit and therefore should avoid products that are likely to have lead content, unless they have testing or other information to indicate the products being sold have less than the new limit. Those resellers that do sell products in violation of the new limits could face civil and/or criminal penalties.

Read the whole press release here

Big Government

I consider myself to be in the loop for many things. I read a lot and try to stay informed on some of the more major issues that are going on in Washington. I did, however, miss this one until now:

A new government regulation scheduled to take effect next month has thousands of retailers, thrift stores and small businesses worried they will be forced to permanently close their doors – and destroy their merchandise.

The law is expected to have such a devastating impact that Feb. 10 is now unofficially known as "National Bankruptcy Day."

Congress passed the Consumer Product Safety Improvement Act of 2008, or HR 4040, a retroactive rule mandating that all items sold for use by children under 12 must be tested by an independent party for lead and phthalates, which are chemicals used to make plastics more pliable.

All untested items, regardless of lead content, are to be declared "banned hazardous products.'' The CPSC has already determined the law applies to every children's item on shelves, not just to items made beginning Feb. 10.

The regulations could force thousands of businesses – especially smaller ones that cannot afford the cost of lead testing – to throw away truckloads of children's clothing, books, toys, furniture and other children's items and even force them to close their doors.

What this means is that business like Goodwill, Children's Consignment Shops, SAHM who make children's products, and many other good business will all go out of business. Why? Because they cannot afford to have their items tested for lead. Why are we punishing Americans when we should be regulating what we get from China instead? I'm also sure that we can expect prices to go up, especially for the smaller businesses like Usborne Books and many of the homeschool resources that many of us use.

Read the whole article here