It had been a few days since our older son, JA, had been diagnosed with autism and we’d been online ever since, reading everything we could get a hold on about the condition. At first, the main goal was to methodologically go through everything that had been written about autism spectrum disorder (ASD) as to provide some proof that JA did not really fit within the autistic spectrum. We were still very much in the denial phase, not willing to simply accept the verdict without a fight. But as the research went on, the reading became increasingly mixed with dread. The ice cold suspicion slowly sneaked up on us like a fog that at first seems innocent but abruptly becomes so thick that you can’t find your way out. Could it really be?
At first, we did not say anything about our suspicion to each other. It was as if we were afraid that saying it out loud would make it all the more true. But of course we couldn’t hold it in forever, especially since we are not used to withhold our thoughts from one another. It was my husband who broke the ice and first asked the question out load: “Do you think V might be autistic too?”. Just as I’d suspected, hearing the words hovering in the air brought the sinking feeling that we’d still to hit rock bottom and I answered him in a low voice: “I’ve been thinking the same”.
Suddenly, rather than trying to refute JA’s diagnosis, we were wildly exploring symptoms of autism and other related conditions and comparing them to V’s behavior. To put it mildly, we did not like what we saw. There were many traits that matched exactly the symptoms described. In fact, V seemed to have more autism characteristics than JA who’d already been diagnosed! Coincidently, V’s kindergarten asked for a meeting that very same day, where they expressed their concerns about his development; that he wasn’t saying anything (in Danish), that he avoided their eye contact, and that he wasn’t paying normal attention to the other kids. We were shaken up – we hadn’t expected it to be so bad. I barely managed to hold it together during the meeting but as soon as we were outside I broke into tears.
You can only imagine the awful feelings that consumed us. How unfair to not only have one autistic child but two! How unfair, that our only two children were both autistic! How unfair to go from having two completely normal children to having two children with disabilities! Was it something I did or ate or drank during pregnancy? Was it something in the way we were raising our kids? Was it our genetic combination that was causing this? How on earth could this be?!? In our minds, V had always been the strong one, the healthy one. He hadn’t been born prematurely like his older brother, he had always reached the physical milestones and we had never worried about his developmental progress. Admittedly, his speech development wasn’t quite up to par and he’d had a minor speech relapse the past few months but he was only two years old and we had moved from Iceland to Denmark just after his first birthday so we felt like he had a pretty good excuse. But as we read on, it became increasingly difficult to see past the awful suspicion and I started thinking back for any possible signs that I might have missed. To my great despair, I found them.
For me, this was where my mental state dropped to an all time low. I felt like I’d failed my little baby, that my failure to detect the signs were proof that I didn’t deserve to be his mother. I was completely consumed with this threatening probability that both our boys were autistic. I could barely drag myself out of bed to take care of the boys and get them to kindergarten and afterwards, I crawled back into bed, completely exhausted or went directly online to search for… well, anything that would prove me wrong. I skipped all the classes in school, didn’t read up on my homework and really couldn’t care less. The purpose of it all was completely lost to me. When the boys came home, I tended to them as in a trance. Usually, we make an effort to cook meals for the family but there wasn’t any energy left for cooking at that point so we ordered in every night or ate whatever was available and easily prepared. I was certainly not showing the most nurturing side of me. My poor boys weren’t getting the usual attention and I felt horrible about letting the boys suffer from my inability to deal with my emotional state but at the same time, couldn’t find the strength to do anything about it. Unfortunately, my husband wasn’t feeling much better.
I was wildly homesick and for the first time since we moved to Denmark, I truly realized just how important your friends and family are. I missed them terribly but somehow couldn’t bring myself to call them. First of all, I didn’t want them to feel sorry for me, their pity was the last thing I needed, and secondly, speaking over the phone didn’t really do it for me – I couldn’t bring myself to open up completely and share my deepest feelings. Instead, I insisted that I was feeling alright, that it wasn’t so bad, that I was stronger than that. Of course, those closest to us realized that something was really wrong and urged us to seek some professional help. That was, however, not something we could easily do as we weren’t comfortable enough with the Danish language to describe our feelings to a native and we both agreed that a translator would be a hindrance to a natural dialogue and probably prevent us from opening up at all.
This awful period of mine lasted for about 3 weeks. By that time, the imminent exams forced me to start focusing on my studies again. Fortunately, my father was both able and willing to come visit for approximately a week and he practically took over caring for the boys. It was an immediate relief to have someone, who is as amazing with children as my father, spending some quality time with the boys, thereby giving them the much needed attention we’d been unable to provide them with the last few weeks. Further, it was wonderful to just have him around, as much for the good talks as his calming presence. This had the effect that I could take my mind off of things and just focus on the studies for a while but more importantly, we could see how much the boys benefited from him being there. They became themselves again, cheerful and happy, and it became apparent to us that our sour mood had affected them more than we had realized. Further, V suddenly started showing clear signs of improvement. Just in the short time my father was here, V started saying words that he hadn’t said for a long while and even added a couple new to the pool. I was thrilled.
After that, I slowly started opening up. I found a confidant in an unexpected friend and began reading about other people’s experiences of raising autistic children, something that made all the difference in the world for me. I, who am usually the icon of optimism, slowly started to emerge from the darkness and see the light at the end of the tunnel. The positive sides of getting a diagnosis became more apparent and I ceased to think of an autism diagnosis as some sort of a life sentence. I’ve come a long way since then and think I am gradually getting back to my positive self. Of course there are days that are more difficult than others and I feel the overwhelming feelings crowding in on me, but all in all, I would say I’ve pretty much come to terms with this new reality and accepted the changes this will have for our family.
As for our little V, he is currently going through the diagnosis process and we are expecting the final results some time this spring.