When it was time for K to start preschool, and in an attempt to maximize K’s experience and minimize the stress for all concerned when he started in September 2006, his teachers recommended we use a communication book. The book was a way to record what had been happening lately with K; sleep (or lack of), illnesses, recent events, input from other “team” members, etc. And though K’s support worker is a good family friend, the book ensured that we remembered to pass on valuable information and had not forgotten based on the assumption that she was already aware because we see her in other contexts as well as preschool. Overall, it has been working really, really well and has become an indispensable tool.

As I only get to take the kids to their respective schools once a week and rarely get the opportunity to pick them up it provides me with valuable, and highly sought after, feedback about how things are going. I started thinking that I could look back in his “book” from his first day back in 2006 to now and it would provide a snapshot of various aspects of K’s life, it in fact represents another parallel diary. It would show us how he has been progressing and the ups and downs along the way. It serves as an excellent reminder of what we have been trying to do to help him reach his potential, and is a time line for all things K. The entries are often short, but highly informative none the less, and serve to really jar my memory and bring many things back to the forefront that had otherwise slipped from my consciousness or had been replaced by more current events.

So it was that I was reading the “report” for the day and it struck me that, because my memory is poor, I would love to compare the feedback from today with another random entry from the book. Perhaps the impetus was due to the pride and happiness I felt from today’s entry that I thought a little reminiscence of our meandering path would make it even sweeter. So I think this may become a regular series of posts. A comparison of the present, in all its glorious forms unedited and unfiltered (eg not only the good days get in here), with where we have been. My intent is to post the comments from K’s teachers unedited, though I will exclude names to protect others in K’s class that may not wish to be mentioned. That should provide me with sufficient material to talk more broadly about K, his struggles and successes, and try to apply them to the larger context.

Today, Tuesday March 4, 2008

Us: K was up a couple times lastnight. He ate an O.K. breakfast and has been in a good mood this morning. He had his Tegretol today! ( a reference to the subject matter of my last post).

Miss C: K has been using expressive language a lot today. Wow! Way to go K!! He had a back and forth conversation with another boy and they were able to work out their problem (both wanted to play with the same toy). I modeled some of the words for K but for the most part they were able to solve it themselves.

With Miss M. away K decided to test the boundaries. I could see the sparkle in his eyes as he looked to see what I would do. He soon realized everything was still the same and he settled into a great morning.

October 25, 2007

Us: K had a good sleep but he did go to bed later than usual. Not much breakfast this morning, hopefully I can get him to eat more in the car!

We are trying some new supplements with him so let us know if you see any changes. One of them can increase his energy level but hopefully it won’t make him too hyper and hard to manage.

I wasn’t able to get any into him today either!

Miss M: K was quite present today, though we did notice a fair amount of self talk. We noted one small seizure. He had 2 pieces of banana at snack. We were not sure if you were still keeping him off them. Could you please give us a list of which foods he is staying off of? Grapes, cucumbers, bananas?

On the surface it all seems very banal, but to me it shows so much of what happens regularly and is a good reminder of some of the issues we deal with on a regular basis. One is the ever present mention of sleep. Though by all accounts K is a good sleeper for a child with ASD, he does have bouts of time where he gets up in the night (and unfalteringly comes to visit Daddy’s side of the bed), and usually once a month has an episode where he is awake for a couple of hours in the middle of the night. As any parent knows this can have a dramatic impact on the child’s state of mind the following day (or 2 in some cases). It also reminds me of how lucky we are to have overcome his past sleep issues. From September 2006 to February 2007 he slept very poorly, and by extension so did Tracy and I. It was during this time period that I did a lot of research on sleep issues with ASD kids, and it is widely recognized that this is a very prevalent and long lasting part of the diagnosis. Much of the information that I collected can be found in our documents repository and may be helpful to some. We did try melatonin for a short time and it did appear to be helpful, but it never became a regular part of our sleep routine, though we have talked to other parents that swear by it, and it does get some mention in some ASD blogs that I read.

For us I feel his sleep disturbances were transient and became somewhat habitual and we broke the cycle by introducing a good bedtime routine. We try to ensure that he does not get overtired, as that often leads to night-terrors, and that he gets some physical activity which can be hard during the winter months here on the “wet coast”. The recent introduction of anti-seizure medication is, I think, also having a positive impact on his sleep. If he was having episodes in his sleep it may have led to fractured sleep patterns, but I have not read anything I can recall that will confirm my suspicion. Though it is not hard to deduce that altered REM sleep patterns due to frequent seizures can have a negative impact on the child’s state of mind during the waking hours. Again, that is just my suspicion and I cannot confirm my thoughts with any evidence, but if I find any I will surely point it out.

Simple Joy

And all of this culminates in what has made us so joyful and re-affirms all the work K, and us, have been doing. That very simple, and easily overlooked comment. A comment that for most any other family would not be noteworthy least of all something to blog about, but to us is so very important and indicative of progress. K’s purposeful, spontaneous bi-directional social interaction with another child in his class. His ability to communicate, with some help, his desires and to maintain his composure and keep himself regulated while they reached an amicable solution. It truly is the simple things in life!

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