Monday, August 25, 2008

Good grief

You ever have an issue that keeps coming up over and over in your mind? It's like you can't have any peace or progress until you realize what it is that is at the heart of the problem, yet you aren't even sure what the problem is exactly.

Here is one of those nagging self talk scripts that I am trying to get my hands on... I think I have it figured out, but it is like that Sudoku puzzle that you know you could solve you just can't find the time, or the right pencil or even the Sudoku puzzle itself.

I've mentioned in previous posts perhaps that I have two daughters on the spectrum. My oldest, Sienna, first grader has been diagnosed with PDD-NOS with probable Asperger's. She also has mood disorder (bi-polar spectrum) and ADHD. I have been on a roller coaster with her since she was about 2 years old, feeling like a failure, like nothing I could do for her was working. She was so 'out-of-sync' and so when I found the book, "Out of Sync Child," by Carol Kranowitz a few years ago, something finally clicked with me. I started the long journey of trying to get services and diagnosis's, let alone just basic acceptance of my concerns from my own husband and family members. Finally, after three years I started getting more understanding from family members. It took a lot of tantrums at family events for people to realize that there was any merit in what I was saying about Sienna. No one wanted to believe that such a bright and blue-eyed blonde little girl had anything wrong with her. All along, my parenting skills and credibility as a mother were weakened through every step during this three year journey.

Then, after Sienna's daycare providers really encouraged me to take the matter more seriously, I finally went privately to get medical diagnoses. In the past 18 months, we have had five professional diagnoses all pretty consistent with one another: Sensory Integration, PDD-NOS, Probable Asperger's, Mood Disorders, Bi-Polar and ADHD. In addition, yet in opposition to these medical opinions, the school's psychologist has observed, assessing Sienna at the school and discovered that Sienna doesn't show any problems at all. In fact, the school professionals claim that she is a bright and cheerful girl that perhaps "her mother is in need of counseling and parenting classes."

And, here we are a year later, and I realize, I do need therapy and parenting classes, ever since the school's assessment in fact!

Every day, I fight with my thoughts and feeling about my daughter being on the spectrum. Is she? Most of the time she is fine. We've learned to adjust. We don't do any thing that will be unpredictable or pressure her socially. So, I can't tell. I am going nuts trying to figure out if something is wrong with my daughter. If so, what exactly. And, once it is determined what, then, how will I help her?

I realize that I am thick in denial. I am also so angry. I have become hardened.

And then, a light bulb went on! It was an ah-ha moment yesterday while we took a day trip by train to Chicago. Sienna was not in her normal element. And, when she isn't in her element, her quirks are more pronounced. She acts strange, says weird things, has odd gestures. She doesn't even walk normal. When she was younger, she would act like a dog as a coping mechanism. Now, she acts like a baby to cope in difficult situations for her. She talks like a baby, wants to ride in the stroller and cuddle, just like a baby. I even made a new age appropriate 'blankie' for her so she could have her blankie in times like these. Frankly, I allow it because when she was a baby, she didn't really sit still in a stroller and didn't cuddle or talk much.

I found myself growing so angry during the train ride. I was so irritable with her. I was so mad at her for acting like this. I was mad that we couldn't do any family fun activities any more. I feel so judged by strangers everywhere we go. Most of all, I was disgusted at myself.

Why do I have to be so superficial? I have been a born again Christian for about 13 years now. I was such a strong follower before having children. I was so close to God, my heart was tender for Him. Now, I am so hardened. I don't even feel comfortable going to church, partly because our children on the spectrum have so many challenges in a church setting, but also because of the condition of my heart. I am starting to cope in unhealthy ways myself. I am drawn to cocktails to relax me and other social subtleties that are not Christian-like.

And I really do want to be that caring, loving Christian woman that I once was. I don't want to be cursing at God for giving me children who are so difficult. Feeling so inadequate for this feat, I let out a yelp of a prayer and I heard God telling me that I was in His Hands. I was just going through the valley of grief. I still am in denial. I am still in the anger phases. It is difficult to have a clear journey of grief with raising children with special needs like what Sienna has because every day is different and I will not know what challenges we will face until we are face to face with each challenge.

I have to trust God even more in the daily crises of raising my kids. More than the typical family would. And, that is a blessing. At least that is how I am seeing it in this light bulb moment!


Karla Akins said...

Be patient with yourself. There are times when I'm ashamed of how raw my feelings are, too. There are times I stay home because I am embarrassed and then I'm ashamed of feeling that way. The self-loathing parents feel about their responses to the stress they're under is something people don't talk much about. Good for you for being real! :-)

Karla Akins said...

Oh, forgot to leave my contact info:

Elizabeth Channel said...

Yes. Like I always say, yes. And you are not alone with these feelings, and with the way you are coping. I'll have to email you off-line so I can share more.

Elizabeth Channel said...

OK, I can't find your direct email. Please send it to me when you have a chance!

RE: Blogging. I'm so new to this so I don't have lots of ideas (or lots of readers), but my third-string advice is to get involved with the Mom's Blogger's Club and then get on Entrecard. Those have worked well for me, and I've met so many fun people. And then the NABLOPOMO National Blog Posting Month thing has been good for me because it makes me post every day (most of the time).

I am still trying to learn about Stumble and some of these others. I hear they are important but I don't know anything about them. The Mom Blogger's Club has LOTS of tips, though--so many of which I haven't had time to digest or use hardly any of them.

You are a great writer with a wonderfully authentic voice! Just wait--they'll come!