Processing this disorder

I've been a little slower in blogging lately. I could say it's because the move has taken it's toll, or even that it's been a process adjusting to the new year. But the truth really is it's because I've been avoiding writing a certain blog, or really revealing a chapter in my life.

Olivia has always been a firecracker. The first four months of life, she was always crying hysterically and we called it "Colic". Then as she continued to scream and fuss most of the day, we called it "teething". When it was clear that she wasn't continually teething, we would say that she was just being a "diva". But it was clear, her tempermant and behavior was a bit abnormal.

Last September, I took Olivia into a doctor's appointment that turned my world upside down. What began as a fight to get her to gain weight, opened a pandora's box that I never expected. We started seeing a therapist about her development. They did evaluations and intakes, and we saw more therapists and in November, we received the news that Olivia had sensory processing disorder. It would often cause her to be agitated most of the day and it is what caused a severe delay in motor development. Though this is often associated with children who have autism, the therapists assured me that she was cognitively developing just fine, in fact she was well ahead in her speech. What it means for her is that she has trouble processing in unfamiliar environments with unfamiliar faces. She is extremely sensitive to touch, and avoids it at all costs unless it's mommy or daddy. She is especially sensitive on the inside of her fists (making it difficult to eat with her hands) and the bottoms of her feet (making it impossible for her to stand on her feet, and even to crawl). This opened up so much of a world that was dark to us. We couldn't see why she wouldn't gain weight, but the new textures of food were challenging to her. We couldn't understand why she wouldn't roll over, or sit on her tummy, or even try to crawl, but when we discovered this disorder it was like a lightbulb went on.

After several months of working with therapists twice a week, we're still trying to understand the world our daughter lives in. She has progressed amazingly well; not only rolling over, but learning to crawl and sit up. She even practices standing up a few minutes a day. But it is a REAL struggle for her to do it. It's not muscle tone or development, it's just that it scares her and it makes her feel out of control, so she doesn't want to do it.

Along with this disorder comes some disconcerting and sometimes scary behavior. She used to scream and thrash around a lot and we never could figure out why. As she got older, she began doing things like biting objects really hard, scratching people (I had huge gashes on my face) and banging her head against the floor. Because her nerve endings are so agitated, it sends messages to her brain to be angry therefore causing her to act out. It was really hard to deal with at first, but we're getting to the point where we're teaching her to control these urges by using push therapy and joint stimulation. I thought it was a lot of kooky nonsense until I saw it dramatically change her disposition.

The hardest part for me as a mother has been learning that this is not a temporary "delay" in development; it's a lifelong disorder. Because we caught it so early, we are able to channel it and will hopefully be able to help her so much better than if we caught it later. But it also brings sadness and frustration at having to be an advocate of not one, but two babies. Because her disorder is rare, the therapists tell me it will be an uphill battle for her to get aids in school. I have to admit, I have felt defeated. I have questioned whether I have fight enough left in me after working with Elijah's school situation.

I'm also sad that we're back to having therapists and meetings and intakes all the time. That they consider it to be an impairment, that it's not like I can just magically "fix" her. I'm sad that all the other babies this age aren't just walking, they're running all over the place. And that Olivia really could if she wanted to, but her fear and anxiety parallyze her. It's confusing to me, and I still am trying to wrap my brain around it.

Yet, I am confident. I don't ask "why me?" this time. I know why me. God knew. I also look at this incredibly beautiful, intelligent little girl who laughs and giggles a whole lot more now. Who says so many words now, it literally is blowing my mind. And when I look at other kids or read about milestones that she should be at, I remind myself that she is Olivia and she has never been comfortable with being unoriginal. She will not be restrained to a list of expectations, she will do things in her own time. And I am reminded that she brings so much light, so much joy to my life that I simply could not live without her.