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…

K’s big sister decided that what would be a great treat for me would be for the whole family to go to the beach. A quick check of the local tides showed that we would arrive at the beach just after minimum tide, and therefore the kids would get maximum beach exposure for exploring. So quickly we got everything together and jumped into the car for the short 15 minute drive to the beach. They were both very excited, as was I despite still being somewhat sleepy and very satisfied with my banana-chocolate pancakes, eggs, juice, and decaf coffee!

The beach too was beautifully sunny, the wind was blowing slightly and this made the temperature a bit chilly but that didn’t stop the kids from enjoying themselves and it most certainly would not keep K out of the water. As we neared the water’s edge he spotted a gull and the chase was on. Not to be satisfied with making the bird take flight, when it landed a short distance away he was off again, sure this time he would be successful. The bird flew off this time and K and I continued our search along the shoreline for other interesting creatures. On a few occasions he threw himself into the water and lay down on his stomach in the chilly ocean water to bask in the glory that is “the beach”. This was followed fairly shortly by the need for me to carry him up the beach back to the towels to dry off and warm up which presented itself as a grand opportunity to have a snack. Tracy and K’s sister continued to search the shoreline for various creatures and natural treasures and soon came to join us on the blanket to soak in the warmth of the sun away from the shoreline and the slight breeze.

Never one to pass up the chance to catch a little rest, and it was father’s day after all, I stretched out and listened to the wind, the sea birds, and took in the warmth. After their snack the kids headed back to the beach just below our picnic spot and started building sandcastles and amusing themselves as only kids can do.

I began to think that this idyllic scene seemed to be somewhat unlikely even last year at this time. K has come so far and his ability to attend to what he is doing and not just to sit for 2 seconds and then run off in any direction with one of us in pursuit made all this even more enjoyable. Imagine, being able to relax at the beach and talk to your spouse secure in the knowledge that everything is alright and that your child does not need your eyes on them constantly. It was incredibly liberating and relaxing and made an enjoyable morning all that much more so. To those with kids that are not affected by ASD my ramblings must sound very mundane and boring, and that they are and for that I am very thankful!

After a relaxing and very enjoyable morning at the beach we headed home for lunch and to see what else the day would hold and I was very optimistic that my good fortune was only going to continue. As the kids enjoyed their lunch I puttered in the kitchen and straightened up the house in preparation for our dinner guests later on in the day. I enjoyed some lunch and worked out in the garage for awhile to boot!

The kids helped Tracy work in the garden and played in the yard, I think they too were enjoying the nice weather as this spring has left more than a little to be desired, and though cool in the shade with a slight breeze it was beautifully clear and when in the sun it was warm and inviting.

When gramma and grampa came over we had a nice family BBQ and chatted for awhile keeping our collective eyes on the kids playing on the trampoline. As they eventually made their way to the door we started to get the kids ready for bed and now Tracy and I have some time together for me to tell her how great the day was!

However, there are numerous other areas of autism that I spend a fairly significant amount of time pursuing such as reading autism related news, blogs, and research on almost a daily basis. Not to mention the endless discussions about K, his progress, his team, upcoming events, appointments, and various meetings. These activities provide me with an additional sense of contribution to K’s progress, that I am contributing to the larger ASD community, and provides some additional content for our family’s website as well as this blog. But it is not hard to imagine that it can become very time consuming and borderline compulsive if not kept in check, especially given the amount of information that is available.

Recently Tracy and I joined a local advocacy group that is just getting underway. The group is still getting established and finding its voice and it is exciting to be involved in this venture. I volunteered some of my meager technical knowledge and am trying to help establish a web page as well as provide some online collaboration tools to help assist everyone in working together as all involved have busy, hectic lives. As this project too is very ASD-centric it is adding to the “saturation” and has necessitated a brief hiatus from some of my other activities that relate to ASD, including the blog.

To make matters somewhat worse K has not been sleeping well for the last couple of months. This usually involves getting him back to bed after he has come to “visit” us in the middle of the night and waiting for him to fall back to sleep before heading back to bed myself. K usually makes out alright and only has a minor disturbance in his sleep, except for those rare (touch wood) occasions when he is awake for 2 hours, but it leaves me with a fairly disrupted sleep schedule that is beginning to take its toll. I am fairly certain that this is definitely a contributing factor to the saturation effect and we are going to start being more active in re-regulating K’s sleeping pattern.

This is familiar territory for many ASD families and us as well. There was a period last year when K did not sleep well for almost 5 months; needless to say this is hard on everyone involved. It is now time for us to re-visit some of the strategies we used before to get him back on track and to get out of our own routine that has allowed this regression of his sleeping pattern. I think this is more about habituation, his and ours, than anything else and hopefully by being diligent and establishing a new, and more appropriate, pattern we can all get back to enjoying the now ever so elusive sleep. If there is a bright side to the lack of sleep it is the opportunity it has given K and I to bond and this has carried over beyond these times of wakefulness and into our everyday interactions. This has not been easy and started a long time ago and will likely be the subject of another post.

Now, it’s time to get the kids to bed and start back onto the road of full nights of sleep and pursuit of our often talked about but rarely achieved state of balance…. What a pleasant, and motivating, thought.