Thursday, September 27, 2007

THE PATH LONG FORGOTTEN

How do I start this post today? Some of you may think I'm about to eat some serious crow. That's cool - I'll try to not get feathers on you. Some of you may laugh at my hypocritical nature. That's cool too. The world loves to prove a hypocrite wrong. My mom is about to get the phone call of her life, and feel extremely victorious. You gotta give your mom the upper hand sometimes. That perhaps is worse than writing this post. However, I will fill you in on why today's posting is the exact polar opposite of yesterday (in a sense).

As you all know, I bought the Jenny McCarthy book "Louder Than Words: A Mother's Journey in Healing Autism". Mostly because my mom was harassing me about it after she watched Jenny on The View yesterday. I think that my latter post was more about my feeling attacked by my mom (in a non-confrontational way). In essence, I felt like she was telling me I wasn't doing enough for Kierra. It's hard to have people telling you, "You could do so much more". It makes a parent feel negligent - basically not a very good parent. I don't believe this is true about me. I think I've fought hard to get her to the point she's at today. But I think deep down inside I have lost a little of my drive. I am not the same woman I used to be by any means. Anyone that knows me will tell you that since Kierra was diagnosed, the spirit that was all about me has faded out a lot. People don't really recognize the humbled out me. The me that is not quite as quirky or silly. The me that sits there more often serious and not smiling. Maybe that's why my mom saw something I haven't, or have refused to see for myself. That I gave up even though I didn't realize I had. More accurately, I've given up in finding the a miracle. This doesn't mean I have found it. But I think I have found my hope again. Isn't that just as important?

After reading the book in it's entirely yesterday (yeah that's right), I put it down on my coffee table and stared at the wall for probably a good 10 minutes. I realized my eyes were burning, because I spent the entire day off and on crying my eyes out reading the words on the pages. It was like ripping open old wounds I thought had long healed. Maybe that's what I needed again. Not to re-hash coping and accepting Kierra's autism, but to find the enthusiasm I had to do whatever I had to do to help my child. Jenny McCarthy didn't sell me on any idea in particular. She didn't make me think there is a cure for autism. But she did show me that there are two kinds of parents of autism: those that wallowed in their "woo is me, my life will never be the same" and the parents who would move Heaven and earth to do whatever it took to help their kid. Even if it meant going down more than one avenue that turned up absolutely nothing. Better to venture into the dead end and learn something, than to never take the journey in the first place. I know I've become the parent that lost her way.

Two years ago, before I moved here, my family pediatrician wasn't much help. I had to fight for Kierra's evaluation. I had to fight to get a referral for a second opinion. I was spending countless hours on the internet looking for ANYTHING that might help Kierra. I bought book after book, searching for something. Something I have long ago stopped doing. It was then I had found this diagnostic lab that would test your child for toxicities, allergies and do a metabolic series on them. It was specific to the autistic child. Unfortunately my doctor had never heard of it, and it required going to an independent lab and sending blood work to this place over the internet. I wasn't sure about it because I thought it could just be a hoax to extort money from parents desperate for answers. I asked Kierra's neurologist about it, and he also didn't recommend it. He had never heard of this being part of treating autism.

While reading the book, I re-discovered this process. It's called DAN or Defeat Autism Now. I realized last year that I spoke to another mom in the park about this technique. She had claimed she took her son to this doctor and that he had done these tests, made some life-style changes, and how he was functioning better. At first, I didn't buy her whole story. If there was a cure-all out there, why wouldn't all parents of autism know about it? She had told me the doctor's name, and ran to her car to write his name on a piece of paper. I put it in the pocket of my jacket and left it there. Then last month, I had talked to Kierra's psychologist and she was saying I should really find a doctor here that specializes in autism. I agreed and she told me about this doctor that a lot of her clients have been going to. Low and behold, same doctor as the one written on the piece of paper in my jacket pocket. I decided to google him, and read the information on his website.

I read about the naturalistic approach he took to treating autism. He wasn't about putting children on anti-psychotics or anti-depressants. He did a series of blood tests to look for toxicities in the body, allergies that could be causing issues, and looking at the body for mineral and vitamin deficiencies. The same approach I had found on the internet two years ago. For some reason I didn't want to dismiss this. I wanted to look more into it because I had Jenny's words ringing in my head "your child is worth trying for". So I sat down and sent an email to him, explaining my situation. I already knew he had a long waiting list, but I figured at least I could get more information about it, not fully expecting anything.

Last night Dr. K called us himself. He spent ten minutes on the phone with Jarrett asking questions about Kierra. He asked if we could come in this Saturday morning, as he had a last minute cancellation. We were stunned. I couldn't believe in the course of a day, I could go from being the hugest pessimist to all of a sudden talking to a doctor about looking into testing for Kierra. I saw a grin on Jarrett's face I haven't seen in such a long time. It was hope. Hope he long abandoned also. Last night in bed, we started to talk about it, and he told me, "You know, it may not be the answer we are looking for. It may never turn up anything that will help Kierra. But how can you blame us for wanting to at least try?" And he was absolutely right. My baby is worth all the disappointments I may face barking up the wrong tree. But more, my baby is worth trying and possibly finding something that helps her make strides in this world.

Nothing has ever been gained from giving up. I realized that doing this is like giving up on Kierra. I would never want to do this; intentional or not. True I have been an advocate in having her therapies in place, making sure she got what she needed. I thought this was the most I could ever really do. As long as she had her services, then I was doing a good job. And who do I have to thank for reminding me? Jenny McCarthy. She made me realize that sometimes it hard to stay strong, and even if we loose our way sometimes, it is never too late to fight for what's important to us. Our children.

10 comments:

TK the Shrink said...

That's awesome that he had a cancelation and such! Hopefully this is not a dead end for you guys! :)

Slick said...

You're 100% right Elle, it can't hurt and what if it possibly could be a great deal of help? Trying never hurts....

Sounds like this doctor takes it serious and I'm hoping he can do everything you hope for.

You got your spirit on the rise :)

Jolene said...

That's great news. It's awesome that you got in so quick.

I also have to commend you on taking new chances.

I watched the whole Oprah show last week and it was really good. It was hard not to get swept away with Jenny's enthusiasm.

Oh yeah, I can't stand the view either - wretched show.

Jenny said...

How fantastic that the doctor had a cancellation and that you may find something else to help her along. So glad that you are feeling more hopeful! Praying that it works out!!

Mommy's Getaway (TamP) said...

I just got big ol' tears in my eyes, reading your post. I hope this is a new beginning for you and Kierra.

M said...

Oh this made me cry.

What a wonderful reawakening if you will for yourself.

I cannot imagine how hard it is to stay strong to stay pushing to try harder and harder and not settle. I've faught just a tiny fraction of this battle (not even diagnosed!) and am so bloody fatigued. Then I get renewed zip and push forward harder than ever.

I really believe life is full of moments where you HAVE to just stop and do what you can so that you can recharge to attack and try something new.

If you were gung ho all the time you'd end up losing because no one can do it all always.

Here's to this dr being a load of help! His personal phone call is a terrific indicator of possibility.

Jacky said...

What a wonderful post. Glad you found new hope, and a new inspiration to move forward. Good luck with the new Dr., sounds like it was meant to be.

Maria said...

Oh, I was so touched by your husband's words...

And fingers are crossed hard for you!

tulipmom said...

I think it's a great sign that the dr. called you himself. I know how hard it is to keep fighting. Sometimes we just need a break. I hope tomorrow's appointment goes well.

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