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.
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!
As I said in my last post: “There Is No Place Like Home“, we’ve moved back to Iceland at last. And although we do miss some dear people we met, we haven’t regretted the decision for a single second. This was absolutely the right thing to do. However, it’s been crazy crazy busy. And not just since we got back but also for a very long time before that. So very busy that there is this feeling of exhaustion hanging over me, not quite taking over but still lingering, threatening to do so if I’m not careful. And it’s my fault really, because I was optimistic enough to really think I could do it all. Well, I guess I overestimated my abilities!
It’s been a year today since you let your presence known and changed our lives forever. I won’t lie, getting the verdict was a tremendous shock and it didn’t get easier when we realized, soon after, that not only did JA have autism but also his younger brother, V. For days we were in complete denial and disbelief. For weeks we were devastated, grieving the loss of our sons’ future we had imagined. We didn’t give you the warmest welcome – rather the opposite. We were angry with you for choosing our boys as targets. We hated your presence and for a long time, we had nothing but negative feelings towards you. I think it’s safe to say that we were not prepared for your appearance but I guess it has something to do with your bad reputation. Fortunately, we’ve come to learn that your reputation is grossly exaggerated.
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!
When asked “which do you want first, the good news or the bad news?” I always choose the bad news first. I guess I always want to get the worst part over with and then start focusing on the positives. Which is why I’ll start this post with the negatives of marriage, namely the divorce rates. When searching the internet for statistics I found that the general divorce rate in the US is approximately 50%. While these are striking numbers, I’m sure they’re not far from the statistics in most western countries. For years, rumors of even higher divorce rates of parents of autistic children have circulated where numbers as high as 80% have been frequently mentioned. Not an encouraging thought and I could not help but wonder: is this really true?
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.
Great news! We have officially been offered (and accepted) a spot for both boys in a kindergarten in Iceland that has excellent reputation for doing an outstanding job with autistic kids. And apparently, it is not just the reputation that is good since my husband, who is currently in Iceland, visited the kindergarten today and was tremendously impressed. Moreover, we have secured a place to live as well… in walking distance from the kindergarten. I am almost giddy with joy and relief!
“V” she said for the 7th time, a little louder than before to try and get his attention. It wasn’t really working, he was very occupied with all the toys in the room and simply didn’t hear her. The physician looked at me and asked: “Is this normal form him? Is it common that he does not respond to his name?”. The sinking feeling became more profound and I nodded. Still, I felt like I had to give him something so I added: “But this is extra bad, it usually not this hard to get his attention. I guess it’s all the new toy that is distracting him”. Despite my excuses the sinking feeling no longer threatened to take over but comfortably settled into the armchair of my mind. The tiny sense of hope vanished and reality checked in again. I knew deep down inside that the outcome of this evaluation was not going to be good.
For those of you who do not know, we currently live in Denmark where my husband and I are working on our graduate degrees. We moved here in the summer of 2010 and our original plan was to live here for a few years and not only finish our degrees but also gain some work experience in a foreign country. However, when the news of our son’s autism diagnosis struck, everything changed and suddenly our future plans were up in the air.