Developmental Pediatrician

Today we had Tyler undergo an evaluation with a Developmental Pediatrician. This was the appointment that we wanted initially, but ended up with a Pediatric Psychologist instead. Both Ryan and I were very amazed at how much time this doctor spent with Tyler vs. the psychologist. The psychologist asked Tyler all of one question, but spent the other hour and a half talking to us. Don't get me wrong. Asking the parents about the history of the child can be very important. But without interacting with the child you can miss a lot.

Basically the Developmental Pediatrician agreed that, while there might be a slight bit of A-Typical behaviors with Tyler (i.e. scripting movies), that overall we are dealing with a speech and language piece of the puzzle. This was encouraging to hear because it validated what I had determined myself. She didn't have any real suggestions for continued care; just keep doing what we're doing. I'm not sure what we'll do when Ryan separates from the AF since I'm pretty sure that not all insurance companies will pay for speech therapy. Right now my goal is to see what his teacher is doing and work to copy that at home.

That's all for now since I'm really tired and would like to go to sleep. Is it bedtime yet?

DSM-IV

In preparation for Tyler's evaluation with a developmental pediatrician I looked up the all-knowing, always confusing, ever elusive DSM-IV (Diagnostic and Statistical Manual of Mental Disorders version 4). This is what caught us off-guard the most at his appointment with the pediatric psychologist and probably frustrated us the most. The psychologist didn't interact with Tyler at all but instead asked us some questions and went through a diagnostic check-list in the DSM-IV. On the way home I rethought some of my answers and wondered if I had answered correctly. I had no way of knowing....until now. I found the DSM-IV online!

After looking over the checklist I came up with 3 things that fit Tyler. You need at least 6 (out of 12) to qualify for any form of PDD. So now I am even more anxious for this second opinion!

Anyone There???

It's been 3 months since my last update on Tyler. We have kept him on milk and finished the supplement program. For a while everything seemed good. His ST came back from maternity leave and was encouraged by his progress. Then, about mid-September he started to regress. More random statements. More SI behaviors. More things that I can't explain. I was discouraged, to say the least.

We discussed this with his ST and she said that she has seen at least 2-3 kids in her care get a lot of benefits from going gluten free. She also said that if we change anything to be sure that we DON'T tell her.

Last week I emailed Dianne Craft to see if she had any suggestions. She recommended putting him back on the program along with doing a six week trial gluten free diet. I had already considered this so....here we go. We have a lot of family coming in town for the next 3 weeks, so during that time he'll be taking vitamins and be back to casein free. After that he'll go gluten free.

Week 9

We are holding steady with the vitamins and supplements. We also have added milk back into Tyler diet this past week. This is where I'm confused.

I can't say that I've seen any concentration differences with Tyler this last week. However, I have been thinking about trying dairy free again in a few months when I am working with him every day doing school work. Perhaps even have Ryan sneak him some milk after 6 weeks so I don't know to be looking for it. Where the confusion comes in is with any physical symptoms. Many children on GFCF diets have a physical reaction to dairy. So if they get some they'll complain that their stomach hurts. In trying to find out if Tyler was having any of these things going on this week I asked him if his stomach hurt. He said no.

However, a couple of times over the last few days he has said that something with milk hurts his stomach. Just now he didn't want to eat his BBQ Beef sandwich (which he usually likes) because he said the cheese hurt his tummy. Now, I'm not entirely convinced that this is not the power of suggestion, so I am trying to figure out how seriously to take him. Any thoughts? He wanted a cookie after lunch but when we told him that they had milk in them (I used real butter this time) he opted not to have cookie. He started eating his cheese so he could get his cookie then decided that he would rather not have a cookie at all.

Week 8

Today marks the final week of adding something new into Tyler's diet. This week we are adding Pycnogenol into his daily vitamins. Specifically, Maritime Plus. The goal of this product is to increase focus and concentation. Tyler has been doing OK in this area, but then again I haven't been doing school with him lately to see if he's been any better lately. His problem is that, since he can't process everything you're saying, he tends to tune you out. It takes a great deal of concentration on his part just to focus and process what you're telling him. After the end of this week we just keep giving him everything that he has been taking for another month.

This past week was Bible School, and the report from his teacher is that he did great! I was with a younger class so I only observed him during the group singing time. He really love the songs and all of the motions that went with them.

Last night and today I have added some regular milk back into his diet. The only thing that I've seen so far that might be connected is that he was in a bad mood at church today. His bad moods are difficult to deal with, and overall he hasn't had as many lately. But that could be a coincidence and more directly tied to the fact that we changed the routine slightly. He has a notebook that he takes to church and he is allowed to draw pictures in it (usually of pirates). Last week we let him draw pictures for a while, then we gave him a piece of paper with the words "God" and "Jesus" written on it. Actually, I held the paper and it was his job to tell me if the pastor said either of those words. He did pretty well last week. We tried again this week, but we started with that instead of letting him draw first. He was OK at first, but unfortunately "God" and "Jesus" were not two key words for today's sermon so he lost interest after a while and wanted to draw. When I insisted that he pay attention he got frustrated with me and was in a bad mood for about the next hour. Next week I'll be sure to ask the pastor ahead of time for words that will keep him busy making tally marks.

Here's a picture of him during the VBS closing program (he's in the lime green shirt)

Week 7

This week we're adding in lecithin to Tyler's diet for the purpose of calming the nervous system. After this we only have 1 week left of adding things, then we will hold steady for another month with everything that he has. After this week I do plan on adding some milk back in to see what happens.

From Dianne Craft's website on lecithin:

There is another important fatty acid, lecithin, that helps the body digest and utilize the fats and oils that are so important to efficient brain and nerve function. Perhaps the greatest recent discovery is the use of lecithin to activate a sluggish mind, and improve memory. It accomplishes this by providing the body with the ingredients necessary to produce the vital neurotransmitter, acetylcholine. This is the neurotransmitter that is responsible for memory storage and retrieval, and the effectiveness of nerve signals in many areas of the brain.

One of the most exciting areas in which I have seen lecithin make noticeable differences is in the improvement of auditory processing function in children. I have received many reports from speech pathologists and parents telling of greatly improved auditory processing (hearing and remembering) in children who take this natural soybean product. My experience is that when lecithin is taken alone, it is very helpful, but when taken along with the essential fatty acids (fish oil, flaxseed oil, evening primrose oil) and Vitamin E, it produces marked results. Because of its fat emulsifying properties it helps the child's body digest the extra oils, thereby making use of them properly. Many children who have suffered with numerous ear infections benefit from the regular use of lecithin. The "cilia of the ear," (the tiny hair-like parts of the ear) are frequently damaged when many ear infections have occurred. It is known that the highest concentration of Vitamin A in the whole body is in the "cilia" of the ear. Lecithin increases the body's absorption of this vital Vitamin A dramatically. Thus it is very healing to the areas in the ear structure and brain that affect efficient auditory processing function. In the MIT study referred to earlier, in testing adult subjects in learning and memory tasks, it was found that the subjects taking lecithin daily showed "improvement of thinking and intelligence." Since we know that the left hemisphere of the brain is responsible for auditory storage, and we often refer to it as the "thinking hemisphere," we can see how any substance that improves auditory processing would also affect the thinking ability of the brain. The MIT study also referred to substantial improvement in the area of speech. Again, this is mainly a left-brain function. This is a very exciting application of research, since auditory processing problems are historically difficult and lengthy to treat. Dr. Levinson, a neurologist from New York, in his book Total Concentration, states that he frequently uses lecithin to help both attention and learning in his young patients.

She also has some information about lecithin and how it relates to hyperactivity. You can read the whole article here.

Through Good Times and Bad Times

Recently I've posted quite a few positive things about Tyler. Currently I'm being reminded that we still have a long way to go. While his speech and other things seem to be progressing faster than they were before, there are still a few other areas that haven't seem to changed at all. For example, just now he got very upset that the buckets that were purchased for the beach were being used outside. They are for the sand. Not dirt. No matter what I said could convince him that it was OK. I finally sent him to his room to calm down. It's the type of being upset that, to most people, would sound like the child just needs some more sleep. Or something. It's as though he is incapable of getting a grip. Like the world is overwhelming. Anytime I've felt like this it usually means that I need to start taking my supplements again to get everything to even out. I just don't know how to help him sometimes....

Week 6

I think that I mentioned before that in years past, Tyler would NOT watch the fireworks and he would block everything out by closing his eyes and burying his face in my shoulder. The last show we went to included us having to leave as quickly as possible and Tyler was very nervous about everything else that night.

All this past week Tyler was very excited about going to the fireworks show. We got to the field around 7:00 so we had to wait for about 2 1/2 hours for the show to start. Even though we knew what time it was the show still started without warning, so it did surprise Tyler a bit at first. This is a picture of Tyler at the beginning of the show:

After a few minutes we pulled out the ear protection and he watched for a while that way. During one of the slower moments his daddy convinced him to pull of the ear protection since it wasn't that loud. Here is a picture of how Tyler enjoyed at least half of the show:

After a bit Ryan told Tyler that the finale was coming up and that he could put the ear protection on if he wanted to. He did and he enjoyed every minute of it! When it was over he said, "I LOVE fireworks!" Meanwhile, I think I cried through half of the show!

This week Tyler adds high amounts of fish oil to his daily vitamin intake. The last time that he was taking fish oil we could see several changed in him, but this is in a much high dose so I'm optomistic.

The other thing that is happening this week is it ends our 6 week trial of being dairy free. However, Tyler will be in VBS all next week so I think I'll wait until that is over to put some dairy back in so I'll be able to monitor him better for changes.

1 in 100

Recently, I read an article that estimates the autism rate in the US as 1 in 100. As always, this number is debated as it is different than the number the CDC has published. However, this got me thinking.

1 in 100. Wow. Does that seem high to anyone else? Why have the numbers grown so much? I have a few theories of my own, but nothing that I can prove. My theories include things like:

• The qualifications for autism have widened so that they include children that would not have previously been included.
• More people having their children "officially" diagnosed in order to benefit from the outpouring of programs available
• Vaccine link
• Food link
• Environmental link

I won't go into each of these to explain my theory on them. I think that you may not find it interesting at all, or would just write me off as crazy. That's ok. I can handle it :-)

After I was thinking about 1 in 100 for a while something else struck me as odd. 1 in 100? Is that all? What I mean is this: I can name 10 children right off the top of my head that have some form of autism. These children belong to friends of mine. I did not meet them in some type of autism support group. These are just children that have crossed my path over the natural course of 7 years time. The 10 children that I can name doesn't even count all the children that I worked with in high school when I was in day cares and school age child care programs. However, I don't think that I would venture to say that I know 1000 children, even if I counted all of the child care kids. Not that I'm going to sit here and count them, but I'm pretty sure that I would fall short of 1000.

What do you think? Is 1 in 100 high or low?

Out of Sync?

Tonight I picked up The Out-of-Sync Child and The Out-of-Sync Child has Fun from our local library. I was pretty proud of myself because I actually thought to get them from the library instead of buying them off of Amazon! Someone recommended these books to me a while back and they've been on my wish list ever since.

I started scanning through the books tonight and I must admit that I'm mixed between baffled and frustrated. This just doesn't seem like Tyler. Maybe he just has a few sensory integration (SI) things going on. He is simply not the typical SI child. Then again, maybe there isn't a "typical" non-typical child? I would really love to get The Mislabeled Child, but our county libraries don't carry that one. I just figured out how to request a book from other libraries in the state, so we'll see how long it takes to get it in!

In the good news I did the yeast test with Tyler and it came out good! I'm going to keep testing him for the next couple of days, but for now it looks like I don't have to worry about the low carb/low sugar diet. This is a big relief on one hand, but it also means that the checklist for yeast overgrowth probably doesn't apply to him. So I suppose that it means one more thing that we know it isn't.....on to the next!

Week 5

Nothing huge to report this week. Tyler remains very dilligent to talk about what things have milk and what he can and can't have. Last week we also had son #2 tested for Celiacs disease. While I hope that it comes back negative I have no idea how to explain some of his physical differences otherwise.

This week add 100mg of B complex in with everything else. Many parents have reported great improvements with their children when they are on high doses of B vitamins. One reason why this could be true is because B vitamins help build the serotonin in the brain.

My mom found an old home movie this past week. As she was watching she was very surprised to see that one of my brothers (a different one than I usually think of in regards to Tyler) had very similar mannerisms to Tyler. I'm anxious to see it now but unfortunately it's on an old tape so we're not quite sure how to get if off to preserve it before the tape self-destructs even more.

I'm anxious to see how everything goes this weekend with the fireworks show! In years past Tyler couldn't handle the noise so he hid his face to block it all out. I'm going to have the ear protection with us but I'm really hoping that I don't have to pull it out. Hopefully I'll remember to get some pictures to show you all how it goes!

Dining Out

Today is DH's birthday so we celebrated by experiencing our first dining out experience with food challenges! We went to Longhorn Steakhouse, which has a gluten free menu, but other than that did not list any other allergens.

I let the waiter know right off the bat that we would be difficult people when he brought the bread and I asked if it had milk in it. He was very nice and even brought me the label off the box so that I could be sure. He also checked with the manager about the chicken tenders (they had breaded and grilled on the kids menu). Tyler ended up with a hamburger without a bun (he wasn't sure and couldn't find out) and fries. The meal also came with a couple slices of an orange. When Tyler saw that he immediately asked, "Does orange have milk in it?" I smiled and told him no. I heard the waiter chuckle a bit, so I don't think he was too put out by all the extra work we were putting through. We did give him a bit extra on tip since he really was quite helpful :-) Overall, I was glad that we were at a place like Longhorn Steakhouse instead of Applebees since I didn't think that those servers would have as much time or patience to answer all of my questions!

After that we came home and had a cookie cake and ice cream!

Week 4

There have DEFINITELY been changes in Tyler. His conversations have improved by leaps and bounds, although I know that we are still just getting a tip of the ice burg. Tonight he said something that made me want to a) Leap for joy, b) Laugh at him (it was funny!), c) Cry, d) All of the above.

This week we'll add Mineral Rich by Maximum Living. I've been anticipating this one since this one tends to help with several different SI behaviors. Dianne Craft says, "Mineral Rich helps tremendously for children with 'SI' symptoms, Sensory Processing problems (loud noises bother them, transitions are hard, picky eater, tags bother them, chewing on clothes, socks have to be just right, etc)." This supplement is high in magnesium, which is nature's tranquilizer. It should also help with his constipation problem.

I'm also encouraged that he is understanding that he can't have milk. Tonight we were talking about my husband's upcoming birthday. Tyler asked if ice cream has milk in it! I told him that this was a very good question, and that while most ice cream does have milk, I had bought some ice cream with no milk just for him. We then went on to have a conversation (two-sided conversation!!!) about what to do if someone offers him food and what he needs to say to be sure that it's OK to eat! This time last year this type of conversation would NOT have been happening. I might have tried to tell him such things, but it would have been far from a two-sided conversation.

Week 3

Tomorrow marks the beginning of week 3. So far I can tell that there has been a change in Tyler...I just can't put my finger on it. I was talking to DH about it today and we came to the conclusion that Tyler is communicating more about things that are more than just "nonsense" talking. What I mean is that his usual mode of communication involves things like, "Mommy, green light means go, red light means stop", or "Lady (our dog) is black. She's a girl". Those kinds of things. But in the last week or so it does seem like he has been having more meaningful conversations. Like I mentioned before, I think it is harder for me to pick up on the changes right now because of the 2 extra boys that I'm watching during the week. I'm trying to come up with ways to spend more time with him so I can observe him more.

This week we are reducing carbs and sugar. I also bought an acidophiles that I know was transported refrigerated, so we'll see if that makes a difference from what we were giving to him.

As far as the dairy goes, I found out that Tyler does like Almond Milk much better than Rice Milk. He was quite excited today when I let him get the Chocolate Almond Milk. I also got some ice cream that he can have next week for DH's birthday party. Oops....did I say that we are reducing sugar?

Week 2

This week Tyler is taking acidophiles and grapefruit see extract 3 times a day. He was sick over the weekend but seems to be doing better now. We're out of Rice Milk so we'll see how he does with the Almond Milk.

Next week we will be reducing carbs so this week I get to brainstorm on meals. I have found that lunches for everyone seem to be the most difficult. Cutting out mac & cheese and all the cream soups really cut back on our lunch menu! I've been considering making mac & cheese for the other kids and just giving Tyler something different. For the most part I've been trying to make the change without making a big deal about it. But maybe for my sanity I need to do something different. What do you think?

Fast Food

I just wanted to share a blog that I found this week! I was looking for information on fast food items that have casein in them and I found this! I has been very helpful in looking at what things Tyler can and can't have. One thing she doesn't mention is that if you are only casein free you can opt to keep the cheese off on many items. But it was nice to know that all the chicken nuggets out there contain casein in their breading. I also found the ingredient list for all of Taco Bell's items. Since we can order things without the cheese this may be the easiest place to eat at, especially when we go gluten free too!

Pizza Night

Pizza night was a success! I made a casein free crust, then pulled off a little from the main pizza to make a personal pizza for Tyler. I was pretty skeptical of the Vegan Gourmet cheese, but hubby said it did taste like mozzarella. We cooked Tyler's pizza in the toaster oven so we could keep an eye on it.

I had to switch it to broil to melt the cheese, but it did melt!

After a couple of bites I asked Tyler if he liked it and he said yes! He ate the whole pizza, so I assuming that he did!

Day 5

Tonight I get to try making pizza with Vegan Gourmet cheese. I'll be sure to add extra toppings so it may not be too bad. The cheese is so expensive that I'll only be making one for Tyler, then I'll do a regular pizza for the rest of us.

This week has been a bit challenging. The casein free meals haven't been that difficult, but I'm having a hard time knowing if anything is helping. I'm watching 2 extra boys this summer so the added craziness means that I'm not spending as much time with Tyler (or the others) as I would like. I'm hoping that I'll be able to spend some time with the kids tomorrow and that I will (hopefully) see something that has changed. We'll see. Some people don't see the difference by removing casein until it gets added back into the diet.

I have been wondering something though. For those of you that have a child on a special diet, how do you handle visiting family/friends? How about sending your child to something like VBS where they get snacks?

New Plan: Day 2

We made it through the first day! Last night I did our "big" shopping trip and it took a bit longer than normal since I was reading labels and such. I did manage to find a cheaper butter than I had found at the organic store, but the commissary still didn't have any Vegan cheese. They had Veggie Slices, but those still have casein in them. I did come home in time to catch hubby giving Tyler a cookie that had milk in it, but since it had been promised for cleaning his room I let it slide. I figured that since we were on the first day it probably wouldn't make that big of a difference.

Tyler hasn't complained about having to use rice milk on his cereal, but he didn't care for it this morning when I gave him a little to take with his acidophiles. I don't know if he'll get use to the flavor or if he just won't care to drink it straight. I also bought almond milk the other day so we'll see if he favors one over the other. The commissary does have rice milk for about $.30 cheaper than the organic store, so if he doesn't care for either one then I'll just buy the rice milk at the commissary. I might try soy but I'm a little hesitant of it. I've read a few things about soy that makes me shy away from using it in large quantities but now I don't remember what it was exactly that the article said. Does anyone know?

New Plan: Day 1

My goal is to record at least once a week with what we're doing and any progress that I see. Today is simple. This week he'll take 3 acidophiles capsules a day and he is going casein free. I went to an organic store yesterday and found some milk, butter and cheese for him. I won't let him use a lot of the cheese since it was quite pricey, but I'm hoping to at least be able to make him a personal pizza every week on pizza night. Today's menu is:

• Breakfast-Oatmeal w/ Rice Milk
• Snack-Applesauce
• Lunch-PB&J (I made casein free bread last week)
• Dinner-Sausage and Rice Casserole
  

Experiment

Since we will be starting a new path with Tyler in June we had decided to take him off the supplements/vitamins that the chiropractor had put him on so that his body would be in it's natural state at the beginning of the program. He hasn't taken his vitamins for about a week. Wednesday night he had a MAJOR meltdown. One that left me with my eyes wide open trying to figure out what happened. It happened again twice yesterday. These thing used to happen frequently but had disappeared in the last 6-7 months. I remember back in October telling the chiropractor that Tyler had started to have a meltdown but he was able to be reasoned with rather quickly. At the time I attributed it to the changes we had made but part of me always wondered if I was looking for things to be different. After the last couple of days I can say with certainty that something that we were doing was helping. After the second meltdown last night I had him take a B-6 and an Omega-3. We'll see how he does today...

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