Eight!

I know I’m two weeks late, but life is too busy to spend time in front of a computer typing.  This is good, we are spending more time together!  But it’s also not so good, leisure time to do stuff is rare.

Anyway, Nicholas is 8 years old now.  I guess it’s important to compare how he is today to how he was a year ago.  What has happened in a year?  A lot.  He has physically grown, which is always a plus medically but a bit sad personally.  He no longer fits nicely in my arms though we still try quite often.

Reading

Seeing Nicholas struggle with reading has been real difficult for me. He learned his alphabet real early and could point out letters by two. We would do letter flash cards and he would know all the letters in any order presented to him. He also learned the sounds to most letters. At two years old, I thought I would have an "early" reader.

But that was it.

Then he regressed.

It should have worried me when shortly after his 4^th birthday I pointed to his name and asked him what he said. He looked at me blankly. I asked him what the first letter was and his response was "B." I thought he was being silly, just not interested. But that was to be the way it would be. He no longer knew which letters where what and letters and numbers were the same to him. While I understood confusing an "O" with a "0" I didn’t know how he didn’t see "7" as seven.

I remember watching him push all the button on his microwave attached to his play kitchen. He pushed them in order, one by one, and calling, "I, S, E, H, S, B, T, B, P, O." He was about three years old when this happened and while I found it odd, red flags did not come up.

By the time he started kindergarten he knew the alphabet once again, though confusing letters such as "b" and "d" and he could not write any letters. He could recognize him name. I felt that would be enough to get him started. But that just wasn’t the case.

The first half of kindergarten was a nightmare for all of us. He would not be writing any letters, with prompting and help, until the end of kindergarten. First grade saw a lot of progress. He began trying to spell words and though they were mostly incorrect his attempts were genuine and you could tell what he was thinking. I still have the paper on which he wrote "wtr" to let me know he wanted some water. It was very special. At the end of first grade he had a couple of kindergarten sight words down and he could copy words but his penmanship was almost illegible.

During the summer I was determined to not only not let him forget what he had learned but to also get him to make progress. I came up with a curriculum that included daily writing and sight word flash cards. He resisted a bit but did make excellent progress. He started reading level 1 books with help. I was proud.

The second day of second grade I get a call from his new teacher. Amongst other things she wanted to know what had happened to Nicholas over the summer. The child she was seeing did not match the report she received from the first grade teacher. He knew many kindergarten sight words and some first grade words too. He was blending sounds and reading. I beamed.

School has been in session for a month and a half and he is making progress.

Several months ago we started a subscription to Zoobooks. I knew he wouldn’t be able to read them but thought we could read them together and by the time he could read them on his own he would need to re-read them anyway. So yesterday he was flipping through the pages of one of the books. I spotted a short description next to an image and I asked him to read it to me. His anxiety kicked in and he was stumbling. I started breaking down the words, showing him they were sound combinations he knew. After two words he was reading. He was actually reading a Zoobooks magazine!

It was wonderful.

He is no where near the reading level is supposed to be at. But the way I see it, he is reading no worst than I was at the beginning of second grade. Actually, I know he is reading better than I was. Back then reading didn’t start in kindergarten and no real reading was done until second grade. So he is doing well. And making progress.

Answers, Still Waiting

I had hoped that my next entry would be one with the answers we've been waiting for.  But no such luck.  After so many appointments and evaluations we still don't have the one answer we want the most from the entity that has the most weight.

8 Years Ago

I don't recall off the top of my head if I've shared much about my pregnancy here before.  I'm remembering one post but not much else.  Anyway, my pregnancy wasn't great.  It wasn't awful and I didn't have major complications but it wasn't the glorious walk in the park we all hope it will be.

It was stressful.  So very, very stressful.  What made it the most stressful was that I was not sure if I would be handed a child with Down Syndrome or not.  I refused the amniocentesis which left me with two positive screening tests and contradictory ultrasounds.

But on this day, 8 years ago, I met my little shrimp for the first time.  I saw him squirming on the screen and heard his tiny heart beat.  I was told he wasn't quite right and more tests would be needed.  The words "markers" and "trisomy 21" were uttered for the first time or many yet to come.  And on this day, 8 years ago, I looked at that weird looking thing on the screen and told him he was a keeper, regardless of what he had in store for us.

NOV07 7.0 - "Nicholas"

WOW!  He is SEVEN years old and I am in disbelief!  It just doesn't feel like it has really been that many years.  He is now more than half my size and that still amazes me every time I notice.  Granted, I'm short so that's not very tall and he is still the shortest first grader in his school.  But still, DUDE!  Pretty soon he'll be my size, and that's not an exaggeration.  I am happy I have a growing child, my wallet is begging him to slow his growing.

On his birthday we went to Disneyland and we stayed late so that he could watch the fireworks.  He is now tall enough for a lot of the larger rides and he enjoys those.  On Sunday we had cake and pizza with grandma and parents.  This coming Saturday he will have his birthday party at his aunt's and finish off his birthday month celebration with Thanksgiving.

His 6th year was packed with all sorts of experiences and new things and changes.  Not all were good.  We have learned a lot this past year and grown a lot:

Keeping Afloat

I can't say I'm the most positive person around, my wife likes calling me a debbie downer.  It's funny because, despite her accusation, I make great efforts to stay positive and not dwell on myself.  But right now I need to vent a little.  Maybe a l not.  I'm only human, I have feelings and emotions and pains.

For the past two or three weeks... maybe a month, I've not been well and the only thing keeping me going forward is knowing it could be worse.  And it looks like life is on a mission to make that as painfully obvious as possible right now.  I have two friends that have lost husbands, one with a daughter the same age as Nicholas.  One friend who was in the hospital for almost a week due to strong contractions and, basically, premature labour.  She's only 26 weeks along and very young and scared.  Someone who miscarried at 30 weeks due to shitty doctors (not in the US, no possibility for suing).  I could go on with what is going on around me and I do feel for these people and I know full well their situations are far worse than mine.

But I still have mine.

Is He Just Bad?

I don't like to introduce my child, either in person or in conversation, by stating he is autistic.  I feel that it is only one part of who he is and does not need to be mentioned any more than his obsession with Legos or trains need to be mentioned.  But just like Legos and trains, it does come up sometimes.  And when it does I have often been asked if I am sure he is autistic, could he just be bad.

This is where I take a deep breath and remind myself that I am a civilised human being.  In my mind the answer goes something like this:

I Blew His Mind Away

The other day my son was sitting at my desk, next to the kitchen, as I was preparing him a sandwich.  He began singing a song about the months of the year that I remember singing in Kindergarten so I joined him.  His little eyes lit up and we sang the rest of the song together.  When we were done he asked me how I knew the song and I told him that I used to sing it in Kindergarten too.