Reading Revelations

There are only so many days that you have in this life. There are only so many chances you have to do what you really want to do. The clock is ticking constantly in our world, and quite often we choose to ignore it, putting things off until another day. Although I try not to reference it, there is the additional clock that early diagnosis of autism has put into our brain. Some research has indicated that treatment has the best results when provided before the age of 5. Tick tick tick tick. When asked his age I say 3 and a half. But in the back of my mind I see the days in the months; I know it is 16 and a half months until he is five. Tick tick tick.

This is the pressure of having a young child with autism. I have read various reports that indicate that children can make tremendous strides even after that age. In fact, I have read kids whose parents finally find an effective treatment when they are as old as 13, and they become able to read and write or even speak. An interesting story is that of Sue Rubin who was diagnosed at age 4 as severely autistic and retarded. She lived in her autism bubble for years. At age 13, she was introduced to Facilitated Communication where she went on to learn how to type, and graduated high school with honors. She is non-verbal and can function independently. I believe she is currently in college. I think FC has a limited audience in those who it can help, but it appears to have made a difference for her. As nice as these few stories are, it still hasn't assuaged the pressure; more research has indicated the younger the better.

Tick tick tick. So there is a pressure to get the most effective treatment possible for Zach prior to his turning 5. Is his school the best option for this? What is working? What isn't? Who can get the most out of Zach? Who isn't? My mother used to tell me that her grandmother used to say to her: "Little children, little problems; big children, big problems." I see how this makes sense with Sophia. As she gets older, her universe gets larger and brings with it the problems of the world. But Zach's issues are large - autism has thrust him into this larger universe usually left until adulthood - therapists, social workers, schools, doctors, lawyers, government, policies, laws. Blek.

I had the opportunity to hear the director from the Yale Child Study Center speak on education and children with ASD. It was a tremendous opportunity that I am completely grateful for. As someone pointed out, he was one of the first professionals she had ever heard, when speaking about kids on the spectrum, to refer to many of them as smart and very teachable. It was very motivational to say the least. I came out of the conference energized for sure. He indicated that out of a group of 8 children that he worked with several years ago, 5 went on to pass every one of their regents exams in high school! He mentioned that one girl was even in all-state chorus. But the thing I found most exciting was his emphasis that all the kids had autism "with a capital A" meaning not PDD-NOS, not Aspergers or High Functioning Autism. They were all classically autistic - previously referred to as Kanner's syndrome. The 5 hours flew by. As I looked around the room, I realized that out of the few parents there, I was likely the only one that was accompanied by their therapist. In fact, she was the only BCBA in the room. I realized I did have something to be grateful for right then and there.

But while this energized me to some degree, the pressure has actually mounted because of this. I have been neglecting some things about Zach's programs out of exhaustion and not wanting to be obtrusive or confrontational. I know I am no expert, but I can see some clear differences between what is recommended for kids like Zach and what he is receiving. It is up to me to see what I can rectify. This is going to be a lot of work.

Tick tick tick. Is this really how I want to spend my life? Ummm.... no. If I were to die tomorrow, would I be happy with what I was leaving. Ummm..... no.

I make sure to have moments to treasure. One of these is observing Sophia flourish. I watched Sophia get on the bus this morning as I do all mornings, and I felt joy in watching her independently walking to the bus, backpack on her back, smile on her face, ready to face whatever. And then my heart grew heavy. How can this instance bring me joy and sorrow at the same time? The juxtaposition of her brother. I so want Zachy to be able to do the same.

My little girl appears to be doing well. I met with her school psychologist, aware of my concerns, who said she has no indication that there are any problems with Sophia at school. I will be meeting with Sophia's teacher next week to discuss her future and what the expectations will be in first grade. But along with Sophia's development, I also am concerned with her happiness. That is one of the things I want in my life - to cherish my children, both of them. I made a point that Steve and I were there a few weeks ago at her school birthday party. (They were celebrating summer birthdays in June) and I signed up for a read to the class opportunity. I have not been in Sophia's class once all school year with the exception of these two events and one open house and one parent/teacher conference.

Can you believe I was actually suffering from stage fright? You should have seen me with piano recitals years ago! (I used to barf my brains out) And you wonder why I never continued on with that music major... Anyhow, I brought three of my favorite books for the class, "Diary of a Worm", "Skippyjon Jones" and "The Magic School Bus: Waterworks". As I read the first book - I felt like I was doing pretty good - they seem engaged and interested. The second book was a bit longer, but my mangled Spanish and Mexican accent kept them mostly engaged. The third book I was going to have to use another tactic - so I laid heavy on the eye contact. And something did catch my eye. Amidst the middle of this crowd of kindergarteners sat a little girl in a dress and... well... no underwear. It took everything I had not to react and to keep on reading. At least I know that I am not going to lose the mother of the year award this year to this mom; I have managed to get underwear on both kids prior to leaving the house so far all this year. I got in my car to leave, and I laughed so hard, like I hadn't in such a long time.

Glad I took the time to be with my daughter. The Divine even threw in a laugh for doing the right thing and taking the moment to appreciate my daughter.