In my last post I was still riding high after celebrating for the first time the World Autism Awareness Day (April 2) but that was just a short break from the not so cheerful days leading up to it and then taking over again. You see, my husband and I have both been sick for the past few weeks, nothing serious, just a persistent nasty little virus that has kept us feeling miserable for way too long. As you all know, when you are feeling sick, you are not exactly a burst of energy and as a parent, use up what little energy you have to make sure your children are okay. Well, when both parents are sick at the same time – especially during Easter vacation in the preschools – it is a recipe for disaster!
I am this type of person that needs to go outside and breathe in some fresh air if I am to feel okay. Thus, staying inside for an extended period of time, let alone when already feeling miserable, is not optimal for my usual positive state of mind. I become ill-tempered and honestly, not the most fun to hang around with. So, the past few weeks, I have been rather negative to put it mildly, and somehow, the illness was bringing up all the difficult feelings and worries regarding the boys’ autism.
JA has been doing very well but has craved unusually much attention lately, really draining us energy wise. When I say ‘craving attention’ I really mean craving constant attention. E.g. when you are making dinner or talking on the phone and he wants attention, it is impossible to just say “honey, I am busy right now but I will be there shortly. Just wait a bit.”. He will not stop until he has received the attention he wants. And although it can sometimes be quite adorable, like when he cannot stop hugging you, it can also be very tiring when it goes on and on and on and on…
V, who had started repeating more words, decided to take a little pause from that activity once again and has not really been showing a lot of improvement the last few weeks. He also recently started a new habit of closing his eyes and scream out of the blue, always in the same peculiar way. First come two short screams and then finally one long, each louder than the one before. It’s quite strange and we are not sure if he is stimming (repetitive body movement but can also come out through smell, taste and – like possibly in this case – auditory) or not. His problem with falling asleep, already discussed in my post Autism Sleeping Problems, has never been as bad and then it is the impending result meeting next week that we have with the team of experts that has been carrying out his diagnosis process.
Two nights back, I had been there in the dark with V for three hours already, trying to get him to relax and fall asleep, when all these heavy thoughts caught up on me. I lay there beside him and started crying in silence while he restlessly rolled around, completely oblivious of my emotional state. I could not stop thinking about the unfairness of it all, how hard it sometimes can be and how difficult it sometimes is stay strong and positive. But what I found most difficult at that moment was how badly I missed some quality time with my husband – something we have experienced little of the past few months due to the boys’ very different sleeping patterns.
Where I lay in the darkness and felt the dark thoughts completely consuming me, I started sobbing. Suddenly V noticed but instead of realizing that I was sad he thought it incredibly funny and started laughing loudly. His lack of understanding, although I should not really have expected anything more from a two year old, let alone one who is very likely autistic, completely broke me. I surrendered and left the room heartbroken and inconsolable. Fortunately, my husband immediately understood and without a word, took over the choir of getting V to sleep.
I am not telling this story to attract pity. I am just emphasizing the fact that although we (and I mean that collectively, referring to parents of children with special needs) try our best to be strong and are usually content with our lot in life – it can sometimes be difficult. Then, family and friends can play a huge part in helping us overcome whatever it is that is bringing us down. And as my friend reminded me when I told her about my turmoil: “This too shall pass”. She was right, of course. Our challenges did not just vanish into thin air but as morning broke, everything seemed easier, brighter and better. I even thought I might finally be starting to feel a little better physically as well. And in regards to our boys, I know we still have a fight ahead of us but eventually, we will overcome them. Then again, new challenges will follow. That is the nature of life, is it not?
In my last post I included a wonderful video that showed an honest yet rather positive image of autism. As that was fitting to the positive tone of that post I thought it fitting to put in another video to this post, one that demonstrates the affects it has on a family to have an autistic member.
In case you need it, here is the link for the video.