I have found that though there have been lots of happenings going on I seem to have lost the urge/desire to write about them. Admittedly I am very interested (alright, borderline obsessed) in the workings of our website and in trying to get things set up just the way I envision them. It is unfortunate that a site that only partly works is next to useless and therefore there needs to be a fair amount of development work, especially for a novice like myself that just tries to muddle through by trial and error, before the site can be rolled out. I’m now hoping that all that is left is just some minor tweaking on this site and then I can start doing what it is supposed to be about- the content (hopefully I can stop obsessing about the techie stuff).

I want to start updating some aspects of our site and continue a couple of series that are the most popular on our site:

• K’s toe walking and that series of posts are far and away the most viewed on our site and I will be updating that series shortly.  It has also been the impetus for one of my next projects that I am just trying to get finished up and will be dedicated solely to this subject.  So stay tuned for more information on both the personal and the techie level.
• K’s seizure activity and our continuous efforts to keep them controlled and how we are managing so far. These posts are also quite popular and is also something I want to update for others that may be having the same experience or undertaking the same journey.
• Our work with a local advocacy group has motivated me start another project that will be a community based site with a lot of local information and content as well as a forum for the exchanging of ideas, information, as well as goods and services.  I am close to finishing it and just need to finish up some of the features, load some initial content, and hopefully local families and individuals will find it useful.
• A new series I want to start documenting is K’s journey from pre-school to kindergarten and what we as parents have been doing in the background to make that transition as smooth as possible and to ensure we are getting all K’s supports in place for the big move to the public school system.

So, look for more content and less techie tweaking to come ( I hope- as long as the site keeps working Ok).  Hopefully I can get the writing bug again as there is lots to talk about personally as well as in the Autism community at large. Check back soon for more…

He was also less aggressive. Though this sounds potentially disturbing it just means that he has been striking out at Tracy and I when he has not been getting his way, and I am not totally convinced that this is very different from many 4 year old boys that aren’t getting their way. However, this is definitely not something we want to continue and have been working different strategies to help minimize, and hopefully eliminate, this unwanted behaviour. We are hopeful too that as his language complexity seems to be on an increase of late this will lead to less frustration and more positive re-enforcement during these types of scenarios and the physical response can be diminished.

As K’s language complexity has been increasing and so has his level of social/personal engagement and it has made interacting with him much easier and more productive for everyone, including him. His level of play with his sister has definitely increased and has become more interactive than merely copying or the past one-sided play that we have seen. I hope this will create a positive feedback loop that will fuel on further advances in language and social behaviour.

It would be nice if I could attribute some of his recent flurry of advances to something we had been doing lately. Of course it goes without saying that he is going to be developing no matter what we do, even if we do nothing regarding intervention. However, we like to think we have been fairly successful in helping him on his developmental path and it would be nice to know what we have done so we could do more of the same.

It is good to see this continued development despite his continued sleep issues. Though by many accounts they are not severe they have been going on since early in the year. I have started keeping a sleep journal to see if I can tease out any patterns, but I think I have come to the conclusion that it has a lot to do with habituation. To further fuel my theory, not long ago Tracy and I went away for an evening and the kids slept over at Gramma and Grampa’s house. In true fashion K slept all night long without a peep or a midnight visit and got up slightly later than usual. Very frustrating since I can count on one hand the number of full nights of sleep I have had since February, but does add some legitimacy to my theory. Hopefully this will end soon and we can all go back to getting a decent nights sleep.

In January of this year our daughter’s school was included in a list of 4 schools being considered for closure and I, being a cynic, thought that it would be a foregone conclusion despite public outcry and the obvious short-sightedness of the proposal.

In an attempt to balance out my normal response Tracy and I tried to be involved, albeit very modestly, in the efforts to help save her school. We wrote letters to the school board and the provincial government and attended public meetings to show our support and to try to demonstrate the fallacy of the proposed closure as a cost cutting measure.

To make a long story short, earlier this week the school district voted to keep open all the schools up for possible closure and will look elsewhere for budget cuts and cost savings. This has gone a long way to restore some of my belief in the value of public outcry and mobilization for a cause. As an intellectual exercise I have always been a firm supporter of the notion of standing up for a cause and making your voice heard, but my experience, both personal and from reading/watching other situations, has been that this is often not successful despite the complete and total lack of logic or rational consideration of the outcome. Most often I find that it is the benefit of the few that trumps the benefit of the greater good or what is ultimately the most rationale and logical decision. I think my cynicism is ultimately a direct result of my idealism that is rarely satisfied.

Tracy and I have recently joined a local community group that is working to help improve the situation for individuals with autism in our community. It is our hope that this group can help raise awareness of the challenges faced by individuals and families affected by ASD and we can help be a positive force for change in our local community, our schools, and ultimately our larger society. I hope my cynicism can continue to be on hiatus and our group can achieve some success, but given the dedicated, passionate people that are involved I have little doubt that we will be successful.

I have always been quite a private person and therefore did not talk about K’s diagnosis very much even with my closest friends, though they were aware of it.

I would like to pause here briefly to make something absolutely plain. This should most definitely not be misconstrued as any form of embarrassment about K. I have always been very proud of him and never once lamented what some people refer to as a “loss” when we received the diagnosis (as is indicated here . Though what is related in this blog post is so completely and totally foreign to me as to be incomprehensible). That does not mean that there have not been times when all the stresses have not overwhelmed my meager emotional range and left me in poor spirits, but not once did I ever think less of K. To do so, in my mind, was to diminish who he was and, equally importantly, who he can and will be. This has been one of my strongest driving factors in trying to educate myself about autism and its many complexities, and apply that to the individual that is K. But in that time there were times, especially when he was not sleeping well, that it could feel very heavy, especially when one considers all that needs our attention. I cannot begin to praise Tracy enough here. In short, it could not have been managed without her! She has always been a much needed counterpoint to my personality; yin to my yang. This grossly oversimplified point serves to demonstrate my belief in the need for teamwork, partnership, and mutual support for we are above all else a family.

In starting this blog I have found a means of expressions that I could not find, or was not comfortable with, anywhere else. It has allowed me to release many thoughts and emotions with a certain, albeit false, sense of anonymity. I realize that last statement sounds rather nonsensical. How can posting on the internet be considered anonymous? I have chosen this forum because it not only allows me to express my thoughts and experiences but also fulfills another personal purpose, the desire to contribute and give back. One of the most significant things I have gained from reading many of the autism-centric blogs I frequent is a sense of not being alone. There is a certain, fundamentally human need to feel a sense of connectedness, despite my desire/need of personal privacy.

If no-one was ever to read this blog (though there may be a few out there) it would not change what it has done for my personal outlook. It has allowed the expression of many thoughts and feelings that have otherwise been trapped. It has helped remove some of the weight and gives me the feeling of “contributing” and provided some much needed catharsis. For anyone, likely dads out there, I would definitely recommend something like this. Perhaps a journal or diary if you desire more privacy and don’t feel comfortable with such things as blogs and support groups, but by all means do not do nothing. Ultimately I think that is self-defeating and can become a burden on the family and can further exacerbate what can already be difficult and stressful times.

As always I welcome your thoughts and comments.

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!