Chelation and Christmas

Somehow I fell out of the blog "habit" back in October; not only have I not been writing, but I haven't been reading either. I can blame it mostly on the kids being back in school and work being busier than ever, but I simply haven't made it a priority. I miss it greatly, and resuming this "habit" will definitely be a New Years resolution for me.

This blog started out as a way to keep track of Grant's progress with his dietary changes and his chelation. He's been a real champ through it all, I don't think the rest of us would have fared nearly as well. He's become used to the foods he can eat, and has learned that he just can't have most of his favorite foods any longer. When it started, it would take 40-60 minutes to get him to take his supplements. We tried many different methods, but there's no getting around the fact that it's very unpleasant to taste. We've had frustration with giving him medicine previously, but this was twice a day! We thought it would never get better, every night was such a battle, so draining and defeating. But now, he's always done in less than 5 minutes! We are so thankful! Over time, we've found the following have made the biggest differences:
- changing a few of the supplements, mostly the calcium
- mixing the powders w/ just enough fruit syrup to mix it up, but only so much that it takes 3-4 spoonfuls to get it down
- letting him choose his reward. Some nights, he doesn't even ask for anything, he just takes and it and goes on his way. At first, it was the Rice Dream ice cream that was the great motivator. He's burned out on that a bit and of course it's colder now as well. He's done it for a couple of "hidden" DVDs (Teletubbies and Spongebob) that he only gets to watch for rewards. And lastly, he's asked for "fire" - well not verbally, but by getting the propane lighter and handing it to me, then pointing at the fireplace. The last month or so, he has enjoyed watching the fire start, then putting the beanbag in front of the fireplace and wrapping himself in a blanket to fall asleep in front of the flames.

Next month, we have the first follow-up test from this first round of chelation. We'll find out whether the metal levels (lead and mercury in his case) have gone down, or whether they are going to take longer. Overall, there is no doubt that his eye contact has improved greatly, and his attempts at speech have greatly increased. He truly has many more words but the best part is that he is trying to speak on his own more often. He wants to make his desires known, it's so hard to watch him try to form his words, knowing that the wheels are spinning in his head trying to put them together correctly.

Grant has been so excited about Christmas this year. It was only a few short years ago that he had no interest in presents, no interest in the family gatherings to open them together. Last year was definitely an improvement, but this year when we started decorating the tree, he said "presents" completely unprompted. Unlike last year when he would just start opening presents he found under the tree (way before Christmas), he now understands when we tell him he has to wait.

Owen and Cassidy, of course, have such a deeper understanding. Cassidy has been making presents and buying presents for everybody under the sun. Owen has become Mr. Calendar Watcher and fully understands the concept of time and days now. He has been making his Christmas list for some time now and will share it with anybody who will listen.

With tomorrow being Christmas Eve, it's very unlikely I'll have another post before Christmas. We'll head over to the in-laws for homemade soup and family time and then we'll get home late, wrap the remaining presents and prepare to be woken up way too early!

Have a merry Christmas everyone!

3 weeks?

Has it really been 3 weeks since my last post? I've honestly missed it and have tried a few times to make a post "happen", but unfortunately I've come down with "too busy at work" syndrome. It's just been crazy lately and I've let my blogging pay the price. Or, perhaps I was frightened off by the concept of NaBloPoMo - does that make me a na-nablopomo? On the positive side of NaBloPoMo, it has brought a daily post from MOM-NOS, my favorite blog after she had reduced her postings quite a bit in October.

Wednesday afternoon brought our annual IEP for Grant. We had not been so unprepared for an IEP since our very first one (over 4 years ago!) when we didn't even know what an IEP was. So why were we so unprepared? I'd like to blame it on work, but honestly, our philosophy is that Grant's education always take priority. I could even blame it on the construction going on at the house. But no, it really just boils down to this - things are going good. We are totally on the same page with each of Grant's educators - classroom, OT, and speech. Grant is making real academic progress this year and he is really trying hard to vocalize to communicate. There are no major services that we feel the school district is denying us.

Grant's teacher wrote up a set of goals and asked us to review them about a week prior to the IEP. I had a pretty quick glance but never made the time to do a complete review or write up my own (shame on me!). But you know what, it was a great IEP. The reports were great, and it's just so relieving to know we all generally see the same challenges and progress from Grant, and we are all seeking the same goals.

Without delving into the nitty gritty of the goals in the IEP, here are the main points:
- improve his reading and book skills up to a Kindergarten level (he is in 2nd grade)
- name and be able to address his classmates and his teacher
- tell time
- addition / subtraction w/ #'s up to 10
- master his numbers to 30
- learn 25 new words (according to the report, he sight reads over 50 words now!)
- improve his vowel-consonant sounds and use 3-word sentences

His mainstreaming in the Kindergarten class is going as well as we could have possibly hoped for. He spends up to an hour a day in the K class; he's doing the work and learning in an environment different from the SDC class that he's become accustomed to after 4 years. Our overall IEP goal is to reduce the academic and social gap between his chronological age and his "school" age. If mainstreaming didn't move us toward this goal, we wouldn't do it. But the amazing thing is, and it's still shocking to think it's true, is that he is finally at a place where it really is the right thing for him and it really is helping him toward that goal.

I got me a virus

It's been a few days since my last post, and I think it's mostly blogging's fault. You see, from the time of my first post I've been absolutely obsessed with finding good blogs to read, reading blogs, and writing in my own. Please understand, I'm probably one of the least obsessive people you will ever meet (even virtually). I can't remember ever being so consumed with something until this.
One result of this unexpected compulsion has been a lack of sleep - way too many late, late nights. I held up all right until last week when school started. Ouch. Late, late nights and the sudden early, early mornings caught up with me and kicked my tail on Thursday. See the rubber band on the balsa-wood airplane - it's all wound up tight, right? Well, that's what happened to my stomach and I'm just now getting over it. Ugh. I guess I need to find a way to find/read/write and still get a little sleep as well.

While I'm at it, I thought I'd share a few of the tools I've found which have helped with the finding and reading. Now if I could just find something to help with the writing!

First, I finally figured out what the buzz was about regarding RSS. I've very quickly found that blogs that don't support RSS/Atom get forgotten about. I'm currently using Sage with Firefox to manage my blogroll and easily see which ones have new posts ready for me to read. When I run across a blog that looks like it's worth a 2nd read, I just click the little orange icon in the address bar and add it to my sage bookmarks. Sometimes, the icon doesn't show up, so I can then use Sage to "discover feeds" on the site for me. On a way-too-regular basis, I click "check feeds" in Sage to see which blogs have new posts. I'd love to say that this tool has saved me a bunch of time, but it really has just allowed me to spend more time reading more blogs.

On the finding side, I really haven't found any decent blog search tools. I've found most of my favorites by clicking through the Autism Bloggers ring. Likewise, I read through the comments and click on the reader's name to check out their blogs. Doing so has led me to many great blogs outside of the autism blog spectrum :)

Lastly, I'm just now playing with del.icio.us so that I can keep (and add to) the various lists on my page in a more synchronized fashion, without having to edit HTML (as often).

OK, this is really the last one. I've found Adrian's notes on blogging to be very useful and easy to put into place.

That's it - I have to go to bed! Really!
Oh no, I just clicked "check feeds". Why did I do that? Maybe I'll just read one more...

babe in blogland

Not only am I new to writing a blog, I must admit I'm also new to reading them. I had poked around a few times but hadn't found anything worth a regular visit. Over the past 2 weeks or so, though, I've been up just about every night well into the wee hours reading the stories of peoples' lives. Here are a few of the better ones I've found - how about you?

http://www.momnos.blogspot.com/
http://www.walkingwithalec.com/
http://www.kristinachew.com/
http://www.ccgrows.blogspot.com/
http://benslifeblog.blogspot.com/
http://griffinblaise.blogspot.com/
http://audra3141.blogsome.com/
http://speakdave.blogspot.com/
http://thehoses.blogspot.com/

http://helives.blogspot.com/
http://eye4redemption.blogspot.com/

I've spent most of the time reading autism-focused blogs; as I mentioned earlier, I've been amazed at the different viewpoints, especially the "please don't cure us" crowd. The spectrum at times can seem as wide as the Grand Canyon, but reading these blogs reminds me what the similarities are and what bonds these children (and us parents) together.

Just tonight, I found 2 great blogs about the Christian life. I certainly hope and expect to find more. I also hope to find more folks who are running special needs programs at their church. I know there are thousands of them out there, maybe they are just late to the blogging world like me :)

Other perspectives...

Since I just started this blog, I thought I'd look around and see if other families are doing the same. Uh, yeah! However, I was a bit surprised by some of it. For example, one of my earlier posts was regarding the short autism documentary done by Autism Speaks. I found it very moving when I watched it originally and much of it hit home for me as a parent.
One of the better blogs I found was Mom - Not Otherwise Specified and it led me to a ring of autism blogs. The theme was quite surprising to me. We've been in the world of autism for 4+ years now; I've read a ton of books, newsgroups, been to meetings, worked with the schools, blah, blah... but this is really the first time I've run into such a strong opposition to many of the popular autism treatments and hypothetical causes. In addition, there is a strong backlash to the movie mentioned above; completely unbeknownst to me until last night.

I think it is too simplistic to blame Autism Speaks for making their movie "emotional". Honestly, I identified with 90% of what the parents said in that movie at some point over the last 4 years. As for the comments that parents said some disturbing things, that's just life. Just as autism is a "spectrum", we've run across just as wide a spectrum of parents. Some, in fact most, have accepted this unexpected path change in their life and are working so hard to help their child. Others, though are not prepared to accept that change, or even accept the diagnosis. Still others have a very hard time dealing with the day-to-day struggles. Our 4 year old is a delight, but he's also very stubborn, independant, and defiant. Dealing with those traits tests our patience to say the least, and our skills as parents. But those struggles just aren't the same as those we have with Grant. We know what it's like to be stubborn, defiant, and independant. But, we don't know what it's like to not have communications skills, not desire friendships, to struggle with the constant sights and sounds of our daily being. It is this difference that makes it a struggle.

Lastly, many of the blogs reference a movement by some of the older folks in the autism - "we don't need a cure!". Ok, fine. If you don't, then who is forcing it down your throat? But many, many of these kids do need a cure, the unborn need a cure. It's not just an issue of being socially unaware or different, my child can't communicate! We have been working for 5 years trying to get him to talk again - yes, that's right - he used to talk. And, then it all went away, like a dream, an image that sits just outside your range of vision. You know it's there, but you can't see it or touch it. These kids need to be able to communicate, they need to be able to learn, they need to be able to work, they need to be able to make their own decisions - none of those things will happen if we leave them alone. More importantly, whatever you believe about the causes, there is absolutely an environmental aspect to this problem. If there is no cure, the numbers will continue to grow and the needs will become so great (if they aren't already) that the needs will go unmet. A cure is needed.

Just Beginning...

We are on day 3 of starting the supplements required for chelation. In addition, we are also radically changing his diet as a result of the allergy tests. Right now, he is on "drainage complex", a homeopathic formula, and nystatin (to help control yeast growth in the gut).
He's already a very picky eater, and we are now taking away most of the things that he enjoys. Fortunately, the tests came back fine on gluten, so we don't have to remove all wheat. All dairy/casein is out though, so we get to try rice milk and lots of other not-so-yummy stuff. As much as possible, we are going to try and do this diet with him; I'm sure it will help us eat healthier and it's just too hard to keep food in the house that he can't eat.

I remember when he went on gfcf before, a couple of years ago, cheese was a major issue. We never did find a decent casein-free cheese. Hopefully someone's figured that out by now... the search is on!