Acceptance 2

The dangerous game of thinking ahead.

When you have a new life in your home, that is seemingly heathy and doing all of the things a little baby is meant to be doing the mind wanders. I am sure that I am not alone in having thoughts and conversations about what that little person will turn out to be like and what they are going to do with their lives. We can imagine all sorts for our perfect little bundles of cuddles, milk, poo and vomit! We have conversations about who they take after and wander whether they will follow in our footsteps, or not in some cases!

Well that is how the story went with boy number one, and so far with boy number three- although time will tell for sure. But boy number two has been a different story. I know how typical development should feel as boy number one did exactly that. In fact because it went without any hiccup I didn’t fully appreciate that it was going so well, and constantly looking forward to the next phase of development has been a perk of having a typically developing child. As he develops interests and talents for certain things I can quite easily imagine him going to university, playing any sport he feels like, engaging in any social circle that he wants to. All of these things are because I don’t have any concerns about his development, and because I have had to reflect upon these for boy number two.

So what happens when it doesn’t go as expected?

My experience of having a child that doesn’t typically develop will be similar to others and will be different to others at the same time. This is because although our children have additional needs, they are themselves before anything else, and so they are all different.

We love to celebrate every milestone our children make. We take photos of the first steps, we video them saying words for the first time, we let the whole family see a picture of them on their first day of school and so on.

Celebrating the milestones with boy number two has been no different, apart from that we have often celebrated them at different times. So we filmed with delight when boy number two was able to say his own name for the first time at the age of 5. The trick is to be okay with this and not be sad about us celebrating that and other parents of 5 year olds celebrating their child mastering reading or being able to name every dinosaur for example.

There is a psychological theory known as cognitive dissonance. This means that there is an uncomfortable feeling in your brain when the status quo does not fit with your expectations, so causing some upset or dissonance in your mind (the mind being the cognitive bit). So to avoid the cognitive dissonance when celebrating miles stones with boy number two acceptance is key.

As I spoke of previously, on most days I am all in with the acceptance of his condition and don’t experience any cognitive dissonance. But also as I mentioned acceptance is always a work in progress.

So why is thinking ahead a dangerous game, when most of the time we are happy celebrating his milestones, however different they are to a typical little person his age? Well thinking ahead of high school, jobs, independence and life in general is such a huge thing to contemplate. I know he has additional needs, I don’t know how they will develop and manifest as he grows. Partly because his condition is very rare and quite varied, so it’s hard to have a general rule and partly because treatments and medications might develop too (although with a rare condition, I am not sure how much that would be). So thinking ahead hurts my head a little, that dissonance creeps in. Whilst as I have mentioned, acceptance of it all is there most of the time, that is in the here and now. Perhaps I am experiencing this dissonance because I am ever hopeful that he will make lots of progress and be an independent adult, but at this time, I know how much support he needs… ergo the head hurting!

When we were first given a tentative diagnosis for boy number two, I decided not to google anything, just to wait and see what the medical professionals were telling us. I didn’t want to cloud my mind with too much information, I guess protecting myself from that thinking ahead thing. I was resolute with this for some time, but cracked one day after a more affirmative diagnosis had been made. Actually I did more than crack, I completely binged! I googled everything I could think of, found Facebook groups, read anything I could get my eyes on. After the binge, I think I was more sad than at any other point, and the acceptance was at an all time low. I had far too much in my brain. I can remember scorning myself for doing so, and knowing that I should know better! In fact there was no extra space in my head that month to read my book club book!

As it turns out one of the Facebook groups has been very useful as it allows me to speak to others with the condition and help me to understand it and what it may actually mean in the future. I haven’t actually met another person with exactly the same condition as boy number two, even in my role as a professional.

So I guess sticking with the here and now and the tomorrow, and being selective about what to read and research, rather than the next five or ten or twenty years and reading everything published is an easier path of acceptance and creates less mental struggle. And that is what I tend to do most of the time, but just occasionally I slip up and cause myself the dissonance!