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.
Today’s post is a simple ode to my beautiful, kind, cheerful, loud, computer sick, autistic, persevering, wonderful boy with his easy smile, who turns six today.
He still does, and always has, melted people with his bright blue eyes, shrill voice, and beautiful smile and it can sometimes be pure pleasure to witness his special and genuine view of life.
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.
Today, there was a family get-together. The boys had been with my mother all day and she took them there. I came a bit later and as always, my boys gave me a warm welcome when they saw me. I had been looking forward to meeting everyone as I hadn’t met all of them since we moved back to Iceland. It was nice to see everyone, especially the kids who’ve grown so big since last time I was in Iceland. I think they were also glad to see us, particularly because most of them haven’t seen us in a very long time – most of them, not since we learned that the boys were autistic.
Well ladies and gentlemen, our Denmark chapter is over and we have officially moved to the beautiful land of ice and fire. Yes, we are back in Iceland at last! Not that Denmark isn’t lovely in its own way. It is. And we were lucky enough to get to know many wonderful people that we had to leave behind. Denmark also taught us some life changing lessons, such as how important family is, how it’s possible to live four people in a tiny apartment with one bedroom and make it work, how amazing it is to be able to bike everywhere you go without arriving in a hazy pool of sweat, and for me personally, to calculate the time of travel into the equation of being on time! So sure, Denmark has a lot to offer. But there’s no place like home.
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.
Autism is still a widely misconceived concept but Sensory Processing Disorder (SPD) even more so. In my last post, Why Parents of Autistic Kids Get Judged and What to Do About It, I touch a bit upon the topic where I wrote: “78 percent [of those with autism] have problems related to sensory processing disorder (SPD) where things that most of us can easily handle, such as bright light, loud sounds, how different textures feel against our skin etc., can turn into a negative stimulus and become a major issue.” I don’t have SPD myself and therefore I don’t know exactly how it affects people. However, my sons do have some sensory related problems and thus, I want to elaborate on the discussion in my last post.
This post is derived from my last post “Mothers, Let’s Not Judge Each Other” but is more directed towards autism and how parents of autistic kids are sometimes judged by other parents, even verbally accused of being inadequate parents in some occasions. This may come as a surprise but one has to consider the many ways autistic kids and their way of expressing themselves differs from that considered “normal” and “socially acceptable”. And when someone diverges from the norm, it unfortunately often brings out judgmental reactions from others. So what is there to be done?
Last week I reported that this blog now has well over 1000 followers (and in fact it’s now well over 1100!), something I am still very much amazed about. And what a coincidence that in the same week, I was contacted by Autism Live, a network focusing on everything autism related, that broadcasts online on weekdays from 9am to 12pm Pacific time, for an interview. Apparently, they had stumbled upon my blog and found it interesting enough to contact me and ask if I was willing to be interviewed live via Skype. And I agreed.
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!