Saturday, December 29, 2007

Now that you have all forgotten about me....

...I am back. I have been a huge slacker for the past 4 months. (As if you couldn't tell). Not just with the blog thing...but in everything. So to my friends that I haven't emailed or called in a while, it's not you. It's me. And the slacking has ended as of now. Expect me to call or email soon.

In the meantime, an update for those of you who need it. I don't want this blog to be all about Daniel, but my life has been pretty much all about Daniel lately. A lot has happened so it is going to be hard to sum it up quickly. But here goes...

After the last entry on Providence, we found out that the psychologist Alex 'randomly' met DOES indeed diagnose. I stumbled upon this information when I was looking at a list of reccomended professionals on a parent's of children with autism website. Dr. Wood's name was listed and the comment about him said that he was awesome but has not taken new patients for a long time. I emailed the mom who listed him to ask what kind of therapy Dr. Wood specialized in. She told me that he diagnosed and she was stunned that we actually could get an appointment. Alex called Dr. Wood...he said that he was very booked for the next month but would work us in for the next week. The appointment lasted all day. Needless to say, I love him. He was incredibly thourogh with us. However, I did not leave fully satisfied about the diagnosis....solely because of my insanity. The one diagnosis I did not want was Pervasive Developmental Disorder - Not Otherwise Specified. Which means, it certainly looks like Autism, but doesn't fit the very particular criteria for that diagnosis exactly. For many children, this is actually a 'better' diagnosis than classic autism, because it usually means they are more on the high functioning side of the spectrum. It also gives you all the benefits and services of a classic autism diagnosis. You would think I would just be happy to have my diagnosis so that we could move on to the therapy part, right?

Ever since we started down the road of trying to figure out what is wrong with Daniel, I have been driving myself crazy by thinking one minute, 'no, he doesn't have autism because he is _________. And children with autsism don't do that." And the next minute I would see a strange behavior or read some information on autism and think, "he sooooo has autism." I was back and forth like this constantly. I just wanted a clear answer so I could move on. This post is already way too long, so I won't go into all the psychological reasons why I felt unsatisfied with the diagnosis. Dr. Wood did send us a wonderful 30 page report that made me feel a little went into why it was a type of autism and couldn't be anything else....but it wasn't enough to stop the insanity. It is such a difficult disease to diagnose and there are such hazy areas between the different types. I was also burned out of being in overdrive trying to figure out what to do and how to get a diagnosis and what kind of therapy to do. So I just kind of froze and didn't do anything. (Hence, the slacking)

We did have another appointment with a developmental pediatrician scheduled for the end of November. While Dr. Wood is a psychologist, this doctor is a medical doctor who specializes in developmental issues in children. Dr. Wood encouraged us to still see the pediatrician, and we found out that some friends had been to him and highly reccomended him. Also, because Dr. Wood has been out of the loop for so long and not taking new patients, he is not as well known in the medical/autism community. So a diagnosis from the developmental pediatrician is more "official" in a way....I hoped it would be more 'official' for my crazy mind as well.

A couple of weeks before the appointment Daniel had a dramatic improvement. He began to say some words and actually use them to communicate a little. It seemed like he made the connection between words and communication and then he started learning new words like crazy. It was less than 10 words but he learned them in a very short period of time. So when we had the appointment with Dr. Williamson and I was able to tell him about the improvement, I wasn't sure what was going to happen. I thought that there was a very good possibility that he would say that Daniel did not have autism...that he just had a speech delay or something. We had to wait until Dec. 15th for an appointment to go over the 'results' and get the official diagnosis. He began by saying that he did see the huge difference between how Daniel was doing 2 months ago and now. He showed me the graph of some questionaires I had filled out back in September when I made the appointment. It scored Daniel's development and based on my answers, he was below normal in several areas. And then he showed me how he scored Daniel based on seeing him at the appointment, and his graph had him doing much better. So, imagine my shock when he went on to say that Daniel does have autism. I asked him what kind...where on the spectrum he was... and Dr. Williamson said that he had 'classic autism' (not the better pdd-nos) in the moderate range. Whether it is mild or moderate is somewhat debatable since this is not an exact science. But the fact that it is autism and nothing else is very final.

I was relieved to have the answer, but I had to begin the grieving process. It doesn't sound right to say I am grieving, because Daniel is still here and he is still the charming little boy that I love. But I have been told by many people and professionals that it is expected that you will grieve the loss of the expectations and dreams you had for your child...and the loss of life as you thought it would be. And the funny thing is, I occasionally still find myself automatically switching into the "well maybe he doesn't have autism" mode. I don't know if it is just habit or if I still can't accept the reality of the diagnosis. So, I have a long way to go....

But, I am already feeling much better and there are many great developments. Daniel is starting a wonderful school for children with autism in January. He will go every afternoon for about 3 hours. Their preschool program is amazing and there is a lot of good signs that Daniel could move up the spectrum and be in a normal classroom when he starts Kindergarten. If you are interested in what you can pray for other than my sanity :), please pray for Daniel's ability to have speech therapy every week as we switch insurance in February. Our current plan is ending so we have no choice but to put Daniel on the insurance plan through Alex's work....but they do not cover weekly speech therapy. Dr. Williamson actually reccomended speech therapy twice a week, so it is a necessity that he at least have it once a week. Of course, paying out of pocket is not an option either.

OK, deep breath. Finally, I am done. I hate writing things like this, which is another reason why I have slacked on posting. It is way too long and detailed, but it is impossible for me to jump in and act like nothing happened. Be assured that lighter and better written posts are on the way.

By the way, thank you sweet friends who asked me to keep posting...I probably would have abandoned the blog if it weren't for you.