Today is World Autism Awareness Day. As for now, when it’s 6:35 pm, I can assure you that everyone I know is familiar with what today is all about. You see, I’m a proud autism mama and I’m everything but shy about it – especially not today. I’ve been blasting images and exclamation marks on Facebook to do my part in raising the awareness. I do have bigger news though, but as I’m about to be interviewed by Autism Live in just a few moments, I really don’t have the time to tell you about it right now. However, I promise that I will later today so please check in again.
It’s been approximately one and a half year since our world turned upside down – since we learned that our boys are autistic. It sure has been a roller coaster ride. Emotionally, we’ve delved into the darkest corners of the human mind and then slowly reemerged back up into the sunshine. We still go up and down but the roller coaster is slowly changing from one of those crazy roller coasters where people feel dizzy just looking at them to something a bit more innocent, a bit more manageable. And it seems as if the general direction is upwards of late.
Since I last posted the Holidays have come and gone and it’s 2013 already! How fast time flies. I guess a “Happy New Year” wish is in order. The year 2012 was eventful to say the least but I have to admit that I was not sad to say goodbye to it and welcome a new year – a new beginning. Looking back, for me I feel that 2012 was an uphill struggle most of the way. Sure, it had its ups (this picture representing one of them), but overall I feel that it was a pretty tough year. I am, however, much more optimistic for the coming year. I can feel that it’s going to be a great year!
Those of you who’ve been following my blog for a while probably know about the extensive sleeping problems of our V and how they’ve been affecting the family. As explicitly explained in my post Autism Sleeping Problems, my husband and I have practically not had a night off together in months since one of us has been stuck in the bedroom, trying to get the little gorilla boy to sleep – without much luck! It wasn’t unusual that he was still awake at 11 pm after more than three hours of “Lie down!”, “Stop playing and go to bed… now!”, “Stop standing on your head!” (see video below), and “Honey, will you just please fall asleep now! PLEASE!!!”. It has been a nightmare!
I’ve been kind of quiet lately. That is, however, not due to lack of news – rather the contrary. It has been crazy busy and I simply haven’t found the time to sit down and write about everything that has been going on. As a very brief summary of all the things that have been happening it is worth mentioning the bliss of summer, Icelandic visitors, V starting in a new kindergarten, crazy busy schedules with our Master thesis work, we starting a new exercising program (at last!), some very interesting developments regarding sleep, JA showing new tendencies, and V showing some quite amazing skills. So, yeah… there is plenty to talk about.
It has been almost a month since I told you that I was hopeful. That was the first time in a long time that I had felt that way and it was an exhilarating sensation. All that excitement came from the mere possibility that V might get a spot in his big brother’s basis-gruppe, a special type of institution here in Denmark, consisting of a small group of 6 children, all diagnosed with autism that is supported by 3 or 4 preschool teachers. Although there was no guarantee for the spot at the time, I felt really optimistic that we would get it – so optimistic in fact, that I became a little afraid that I might be jinxing it!
It can be so easy to be negative, to complain, to only see the things you are missing. Of course there can be periods of negativity and pessimism but there are people who generally tend to see the glass as half empty and usually, I find it emotionally draining to be around such people. I am usually the positive type but I must admit that the past winter challenged my positivity in ways I have not experienced before. Some might say that it is normal given the circumstances and that might be right. Nonetheless, things could be worse!
For the first time in a long time, I actually feel hopeful. And here is why…
Last week, our suspicion that V has autism, was confirmed. During that meeting, we reminded them that we were planning on moving to Iceland in a few months. They became a bit puzzled as if they had forgotten about that fact and one of them suggested that maybe the big coordination meeting, that was supposed to be held in about three weeks, should be canceled instead of wasting so many resources for such a short period of time. Fortunately, we had been prepared for the news of V being autistic because if we would have been in shock I am not sure we would have responded the way we did. Instead of numbly giving in and agreeing to the suggestion, both of us strongly objected the idea. We were not ready to wait a moment longer for our son to get sufficient help!
After our older son got the autism diagnosis it pretty soon came to the point where we discussed whether and to what extent we should tell people about his condition. The very first concern that we had was that telling people about him being autistic would automatically put a label on him with unknown consequences. First and foremost, we were concerned with how it would affect our son but naturally, we discussed it also from our perspective as parents. We took to the internet where we read about how other parents of autistic children were addressing this fundamental question about how openly the child’s autism disorder should be discussed and found that it varies substantially between people. As a result, I have summarized a few plausible affects, both positive and negative, of opening up and telling people about the autism diagnosis.
I’d been feeling a lot better lately after the temporary depression that had consumed me when we realized, shortly after receiving the news about JA, that the likelihood of V also being autistic was substantial. During the past few weeks, I had slowly become more like myself, consciously eating healthier and exercising as a way to improve my mental state. It was working. I gradually started opening up and it became less difficult to talk about what had happened. The first stages of acceptance were taking over from the grieving process.