It's been a while

It's been a while since I've been on here writing about my life. It's just not interesting! It's your typical mundane, everyday type of day every day.

I do have some news on the medical front. My daughter has always been behind other kids when it comes to acquiring skills and meeting milestones. In February, she was diagnosed with autism, but that's a long story. I'll try to make it as short of a story as possible because it's the back story for the news that we have.

We went to see a developmental pediatrician in February. I was told the appointment would be 2-3 hours long and assess her in 5 areas of development.

Imagine my surprise when we got there and spent approximately 55 minutes with the doctor. We went into a patient room and the doctor interviewed me. This lasted approximately 20 minutes. She then spent approximately 10-15 minutes giving my daughter a physical examination and interacting with her, or attempting to interact with her. She was distracted by the enormous bookshelf in the room - books are her thing. If there's any one thing I will look back on her childhood and say she obsessed over, it will be books.

After the physical exam and then a brief interaction that involved bubble blowing, a counting game and a sharing exercise, the doctor told me my daughter is autistic, but not to worry - my insurance pays 100% for a 40-hour per week ABA therapy program that she needs. ABA therapy is a common therapy for kids with autism to help them acquire skills by repetition (for the most part, but it's so much more than that really).

I did not feel my daughter could benefit from a rigid program like that and after speaking with some other local therapists, I started to become suspicious that this doctor referred us to that program after such a short evaluation because she got a monetary incentive for sending patients to them. It is really questionable that she barely glanced twice at my daughter and spent so little time with her before slapping her with a diagnosis - and prescribing 40 hours per week of ABA therapy! Everyone I've spoken to, professionally and personally, who knows what ABA therapy is and knows my daughter fairly well thinks that is insane and she is not the type of child to need that rigid of therapy! I mean gosh, she gets 1 hour each of speech and occupational therapies per week and she has improved AMAZINGLY with just that much. 40 hours per week is total overkill.

Now, that's not to say that I thought the diagnosis itself was bogus. I've known that from a young age, my daughter has had signs of autism. There is a questionnaire called an MCHAT that sort of quantifies how autistic a child is, if autism is present at all. The goal is to get a score of zero...the higher the score, the more severe the autism, from what I understand.

At 21 months of age (the time of her evaluation), she scored a 4. When I took her for her 2-year checkup at 24 months, she scored a 1. So in 3 months time, she acquired 3 skills that were previous thought of as skills she wouldn't or couldn't acquire due to autism.

To this day, she would still score a 1. She does not look to me for a reaction in new situations enough for me to feel comfortable marking it off on the list as saying she does it. She does it sometimes, but it's not consistent.

At any rate, now that we've moved to MS, we wanted a second opinion. So we got one - from a doctor who actually bothered to spend time with her and interact with her and since he's a military doctor, he can't accept referral incentives, so there would be no reason for him to diagnose her as anything other than what she is, if she is anything to be diagnosed.

He feels that she is in a gray area between high-functioning autism and global developmental delay with sensory integration dysfunction. However, he thinks she could benefit for 1-2 hours per week of in-home ABA therapy and she can't get that (or rather, we can't get funding to pay for it and we sure cannot afford it out of our pockets) unless she is diagnosed as autistic. We had a lengthy conversation about it because a diagnosis of autism is there for life and he wanted me to be 100% comfortable diagnosing her with it so that she can get the benefits of therapy - and he is REALLY optimistic that she will benefit beautifully from it. He said there are about 10-20% of children who are autistic who...I don't know how to say this and say it correctly....they don't "grow out" or "develop out" of it because you don't grow out of being autistic....but they are able to overcome their challenges so much so that they can function as a totally normal person is society and no one would ever think that anything was amiss about them. The doctor thinks that my daughter has a good chance of falling into that 10-20% because of the progress she's already showed and how well she responds to therapy. And just to state for the record, this is a doctor who is very conservative about over-diagnosing. She does meet the criteria for a diagnosis, but she's a difficult diagnosis because she's right in that gray area next to being globally delayed. He would not have diagnosed her at this point in time if he didn't think she would benefit from the therapies available. And let's face it - while she's somewhat there cognitively and socially, she's not really all there. It's almost as if she's constantly on the brink of another world.....like she's always just 1 step away from leaving us to be in her own world. I wish I knew what went on in her head.

So, that's where we're at. I am the parent of a child with autism. But, it's nothing more than a label. I embrace it because I know that it doesn't define who she is or confine her abilities, but it's a label that opens up a world of opportunity for her and for me as a parent with the challenges I face with her developmental delays. My only major concern about the label is that it's going to prohibit her from doing regular things like go to day cares or cause her to be treated differently by her teachers in school without them first getting to know what areas she doesn't need to be treated differently in. She's capable of anything you ask her to do, she just needs a lot of extra guidance and I know they have special assistants to help kids like that.

In other news, we're just enjoying the weather down here. I sweat more than a whore in church, but I know the alternative means being back in IL and having to face long winters, so I happily sweat! The beach is off limits with the remnants of the oil leak and the dispersant chemical cesspool floating around, but we like to get out and explore the area, go out for a snowball, sit in the backyard with the sprinkler on and our feet dipped in the pool, go out for date nights....you get the picture. I am not homesick at all. I am embracing everything down here with an eager smile. There are so many new experiences to be had and things to see and do. We have been busy spending mornings at playdates or the splash pad or the park or the children's museum. Yep...I am loving life down here! I wish I could always live here.