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.

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!

Reading many of the comments re-affirms my gratitude for living in a province (in Canada) that provides some government funding to cover therapies for our son. When we initially received the diagnosis we thought that there was nothing we wouldn’t do, nothing we wouldn’t spend to make sure K got all that he needed. As time has passed, and we have become more experienced, we have come to realize that we have to be more reserved in our enthusiasm. We are still totally committed to ensuring that we are doing all that we can for K, but we have re-awoken to the need for practicality and balance. K is now 4, and making good progress, but it is beginning to become more apparent that we need to focus past the here and now to ensure we are planning for his future.

I think that early on many parents, and I include myself in this category, focus on the short term for many reasons. There is the natural, and likely universal, sense of urgency, something that I discuss partially in a previous post, as well as a feeling of needing to act on this new information as one does with alot of other medically based information- how do we start to make things better. I am hesitant to use the phrase “cure” here, as this has never been part of our philosophy for K, and can, within many parts of the autism community, spark a furiously fought debate. Again, I will comment only on my behalf and will let Tracy speak for herself, but my only goal since we received K’s official diagnosis is that we do all that we possibly can to help him reach his potential. This is a lofty goal, but it is one that all parents hold for their children whether they have a disability or not, and does not separate parents of special needs kids from other parents. What can separate them in a very many cases is that some parents need to do more to help ensure that goal can be seen to fruition, and that the child’s maximum potential can be achieved.

I am reluctant to think how we would be managing, and how K would be progressing, if we were not receiving government funding. It is when I think in these terms that I can truly relate to that father. Much of the financial struggle is due to the fact that not only can services be difficult to find as many therapists have a full case load, and there is a critical shortage of qualified people in the field, but rates for services can be very costly. I have never actually taken the time, or had the interest until recently, to keep track of how much we spend on K’s therapy, equipment, and supplements as we have always had the opinion that “it costs what it costs”. But I find as my mindset evolves and we settle into a routine that we feel is meeting K’s needs I begin to contemplate the future more and its financial requirements, not only for K but for his sister, and as importantly Tracy and I.

I hope this means I have achieved acceptance and transcended the sense of urgency that has now not only reduced my personal stress, but reduced my anxiety about the future and K’s future. K has always stirred in me, and it continues to this day and likely will never truly leave, a heightened feeling of needing my protection and help. This too is likely a strong motivator for parents being willing to spend anything and do anything, and I think it can be detrimental to the family as a whole if not kept in check.

To the dad who started this post I would pass on these words from my own experience.

As time passes from receiving the diagnosis, especially at a young age, reaction and immediacy evolves into the necessity for balance and sustainability. For many the thought of not being able to provide the one thing that may help their child achieve their full potential is heart-wrenching and almost beyond parental comprehension. Though this is never easy and can be unbearable for many, and is something I have wrestled with extensively, it is ultimately what must be done to ensure that you can provide that which you so desperately desire.

Perhaps I can blame some of it on the time of year, with too much to do, the ever-shrinking daylight, and the seasonal “west-coast sunshine” it may be no wonder I feel that nothing is getting accomplished and I fear that K may be suffering for it. Or maybe, just maybe I have come to some level of acceptance about K’s “diagnosis” and all that we are doing to help him reach his maximum potential. And, to be fair, we have been quite relentless in trying to learn as much as we can about ASD and current treatments that are available so perhaps we are just in need of a well deserved break.

Since we received his diagnosis in June 2006 we have tried very hard to educate ourselves so we could rest assured we were doing all we could do help K and making informed decisions on his behalf. In fact, truth be told, we have done this at the exclusion of almost everything else. There was no conscious intent to have all other aspects of our lives be put on hold, it was just the result of feeling so strongly about what was required of us and our desire to get it done. Perhaps that is the natural first stage of dealing with having an ASD child, frantic education and mobilization of available resources.

Would then the second stage be a degree of normalization and less feelings of immediacy? We work very hard to ensure K is getting all that he needs to be his best, for after all that is all we have ever wanted for him- diagnosis or no diagnosis, just now much of the very intensive first stage has been completed. Is this the natural expression of this very important transition? These feelings of wasted time and a small amount of guilt when there is still so much to read on the subject, there is research to be done and new treatments to investigate may just be phase 1 hangover. I have read on numerous occasions that having an ASD child is a marathon not a sprint and perhaps we have just come to that realization and are just now feeling competent and confident enough to slow our pace. I think Tracy and I will always feel some degree of urgency. We know that time is against us as many treatments are most successful if initiated at an early age and K is now close to the ripe old age of 4 but we are confident in what we are doing and the results we have seen to date.

However, once the silly season is over I plan on re-dedicating myself to the cause. Though I continue to add new information to the documentation part of the site I often do not have time to read it all. This is one area that I am hoping to improve, as well as doing more reading on ASD sites about what other families are doing and finding success with. Part of that goal will be keeping this portion of the site up to date with what we find and our thoughts on the various topics that fall under the ASD umbrella. I also want to get more information on the site specific to K and what we are doing and our thoughts on their outcomes. In short I want to return to the original goal of the site; to organize and share information about ASD and track our experiences with K.

There, I’ve done it. A New Years resolution with time to spare!