Before I forget, Grant said two new words last night - sheep and chicken. I had never heard 'sheep' come out of his mouth before, prompted or not. 'chicken' had been heard a few times, but I thinka all prompted and mostly food-related. He said these words as we were drawing on the Magna-Doodle, one of our favorite activities together. Not only did he say these words, but he started making the animal sounds too! Wow!
On Sunday, you'll find us at church, and at church, you'll find us at Club Kangaroo.
I guess it's been about 3 months now since CK officially started, but I think God's been planting the seed for quite some time. CK is our program for special needs kids. We have a classroom for those kids aren't able to be in a classroom for any reason (and there are a wide variety of reasons), and we have one-on-one buddies for the kids who are able to be in a class. It has been such an incredible experience to serve in this way, and we certainly hope to do it for a long time.
As parents, we know how hard it is to bring your autistic child somewhere, including church, and hope that they can "make it". It really isn't fair to either the child, or to the volunteer staff. So, we started CK with the strong backing, encouragement and full support from the pastoral staff, especially the children's pastors and the senior paster. In addition, we team up with a great couple as we each lead one of the two services, and our volunteers have been just incredible.
I wish you could see the joy, the relief, on a parent's face when they realize that they can drop their child off and know that this child will have someone's full attention, teaching them, playing with them, and protecting them. Even more exciting, we see the children grow in an environment tailored directly for them.
Club Kangaroo on Sundays - what a cool place!
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.
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!
What is life like for an autistic child? What is life like with an autistic child? This 13 min film is the finest glimpse I've seen...
http://www.autismspeaks.org/sponsoredevents/autism_every_day.php
If you haven't read any of these articles about autism - be prepared to be rattled. Great stuff.
Here's another link, although it seems that many have expired.
So, after 4+ years since Grant's diagnosis, we have decided to try chelation. We had tried the gluten/casein free diet (gfcf) a few years ago w/ little success, but we had also done it blindly; we did not have any tests done before or after.
Now, we've gone through a full battery of tests - hair, blood, etc. The tests report that his mercury content is low, although lead is relatively high. He is just now beginning the supplements needed to carry him through the process. In addition, we need to begin a new diet based on the food allergy tests. FORTUNATELY, the tests show no reaction to gluten (wheat)!
So, I will try to document the entire process, along with our successes and failures.
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