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.

Some other articles I briefly read recently and are relevant can be found here , here , and also here.

As I have mentioned in other posts there is little doubt that K’s condition has an impact on his older sister. In an attempt to try to understand and ameliorate the situation I have been looking for information lately on sibling issues in ASD households. This is one article I came up with and as I get a chance to delve deeper into it I’m hoping to get some insight and we can develop some strategies to help K’s sister. Sometimes I think the neurotypical child, because they place relatively less demands on you as a parent, can fly under the radar. This is my attempt to help ensure this doesn’t happen but also to do that in an informed and helpful way.

On December 1 K accompanied his sister and I to her figure skating practice. I have taken him with me before and have found the experience somewhat harrowing. It is usually difficult for K to sit while I tie his sister’s skates and help her get ready for the ice. All of which may not sound too difficult but the problem comes when he wants to run away, not just in the local area of the warm room. Admittedly I find these situations more stressful than Tracy and her immeasurable patience, but I have been trying not to shy away from them and, at the same time, give K more latitude to explore while still respecting boundaries and practicing his listening skills. So it was that the 3 of us got in the car and headed for the rink and to my great surprise that K sat very patiently while I helped his sister get ready for the ice and we walked her out the the rink’s edge. Only a small reminder was needed to keep him off the ice and we were off to play in the arena, have a snack and watch big-sister skate. To my complete surprise and joy he was able to sit calmly while I helped with the skates, helmet, and gloves and we all got ready to go. Wow, a glimpse of what things must be like for “regular” families.

This trend of increased regulation continued, and I even noticed how well behaved K was at his older sister’s birthday party. Truth be told, he handled the whole thing better than I did! There were lots (13 to be exact) of 5-7 year olds and younger siblings running around all over the house and playing various games, all at volume levels that I’m sure were injurious to my hearing. Historically we have seen K not react well to these scenarios. His normal response is one of excitement (he loves when other kids come to visit/play even though he does not always interact with them in traditional ways), trying to participate, and finally overload occurs and he becomes increasingly irritable and we remove him from the situation to an area of calm where he can come down. This was not the case during “the party” and he went the duration and, upon reflection I may have been the one that exhibited his usual social gathering overload, was very pleasant and patient.

I wish I knew what was different during this time period or perhaps K is just feeling a lot of anxiety/anticipation for Christmas this year but his calm and regulation have definitely disappeared. We are hoping that once things get back to normal in the New year that he can get back on track and find that better regulated and calmer little boy. Now that would be a good Christmas gift!