Tuesday, October 07, 2008

A New Trial

The last month or so we have discovered a new trial in our life that has brought on a whirlwind of emotions. I'm sure this has a lot to do with my MIA in the blogger world, and although it might have been good therapy to write about, I needed some time to grieve and accept it before I let the whole world know.

On August 25th Kaybri was diagnosed with Autism. It was our second appointment with the Developmental and Behavioral Pediatrician and after a lot of paper work, tests, and observing they said she had high-functioning autism. At the end of the 1st appointment she said she didn't think she was autistic, but then we came into the 2nd appointment and she started it by saying "If I was queen, and a child needed certain programs to progress, I would just give them to the child. But in the state of Arizona, you have to be diagnosed with something. Kaybri will get some help because she has seizures, but if she had autism she would get every program, so it really would be good if that was the case." You could tell during the observation and the questioning that the doctor already had her mind made up, and after scoring the CARS test, she tested at 31 (in order to be considered autistic you have to have above a 30). I immediately started crying and was mad because she could've easily said she was borderline and not diagnosed her as autistic, but then I realized she really was trying to help and this was the only way Kaybri was going to get the help she needed. She said with Kaybri being high-functioning (or mild autism) that she probably would respond well to all the therapies.

We had scheduled the appointments several months in advance, and throughout the whole summer I would think about the up and coming appointments and just would get a sick feeling. I knew she had some autistic characteristics, but we (and doctors) thought since she didn't have many characteristics and not the "defining" autistic traits that it was probably related to her meds or damage from all the seizures. The more I thought it about it though, the more I knew they were going to diagnose her with autism, but still hearing the words just broke my heart. The whole way home from Phoenix just thinking the word "autism" made me cry. I didn't know how or really want to tell people because I knew I would cry and I hate, hate, hate crying in front of people.

I think the hardest part is seeing how Kaybri used to be and how she is now. How in the world did this happen to her? Within her first year she had met all the major milestones really early. She was a happy, friendly girl that said lots of words; there were no autistic traits. Then she started having seizures and after really bad seizures it would take awhile to regain some skills. About a year ago we started early intervention because of this. And when things really went south was when she had the 3 really bad seizures at the beginning of this year. We could feel our little, happy girl slipping away from us and into "a world of her own" as most would say.

I know this trial will test my faith like no other. Like I said before, many many emotions...
-of course I was sad. Sad that she may not be able to do and become all the things parents hope for their children. Sad that other kids may make fun of her or not want to play with her because she doesn't know how to interact with them.
-a little mad. I know that's awful, and I can say I'm not anymore, but at first I just couldn't understand how a seizures wasn't enough, why autism too?
-I'm overwhelmed. They gave me a huge file of information and I just do not understand how to go about getting into all the programs. From what I've read, insurance doesn't cover therapies (how is that possible?) and getting into state programs is pretty tricky because of the lack of funding, which results in a waiting list when they know that the sooner you get help the better...frustrating! There's also all kinds of other things like diet and other natural stuff that people keep telling us about and I have no idea which one to try first or what will benefit Kaybri the most.
-I'm scared to ever have another kid. I really want more, but I think I would end up in a crazy person house if I had another child with special needs. I know lots of women do it, so I feel really selfish because I know these babies need good homes; I just don't know how I could handle it.
-I'm so grateful. Grateful for my sweet husband and his faith, for my little helper Pax for being such a good, big, little brother to Kaybri, for our family and what wonderful supporters they are, for priesthood blessings and the promises and hope they give me, grateful for the good conference talks on trials, and most of all grateful for a loving Heavenly Father who knows my strengths and weaknesses and for trusting me with such a special little girl. It is my privilege to raise and try to teach her; so far she has taught me far more than what I have taught her.

I have been researching my brains out, and I just feel like somehow/someday she will be better and I am going to do my best to make it happen. I've learned the the autism topic is pretty controversial, but we'll save that post for another day. It feels good to get some of this off my chest; I hope it doesn't sound like I'm complaining. I really do love my life and know things could be a lot worse than a little autism and some seizures.