Spectrums

Eye-test

When I was young, the word spectrum always made me think of rainbows. I love rainbows. But I can't seem to put my finger on the moment that word stopped being about rainbows and colours and started being the scariest word in the English language, and I can't pinpoint the moment in which it started defining our life, it's all about spectrums nowadays it seems. Somewhere along the way to growing up you have to learn the hard truth, there is no black or white anymore, no certainties, and no easy answers. Our life are ruled by spectrums, they are everywhere we look now. It used to be that you could give a simple "yes" or "no" to questions like "are you sick?" or "do you know what's wrong?".
Now we have spectrums, and we might be or might not be on it.
It should have been a lighter post, a happier post, a post that put things in the right perspective. But I was never one to put things in the right perspective and for some reason I don't feel happier. I don't feel relieved. I don't know why, or even what it is I do feel. But I am jumping to the end, so let me explain. As you might remember, on Wednesday we had a meeting with Yon's nursery teacher and the school psychologist, who turned out to be a lovely girl and is actually a speech and behaviour therapist. It was a good talk. Much better than we dared to hope for. The word spectrum was only mentioned at the end, and only because I asked. Basically they talked to us about working with him to be able to verbally express and react to negative situation (instead of crying); saying what he wants / needs; his need for order and routines and the need to be more flexible; the fact that he does not like initiating interactions with other kids on the one hand but will be very happy to play when approached; his love of animals. We talked about his vision problems and explained the possible effect they might have on social interactions like not always seeing clearly facial expressions, and inability to recognise people from afar, and about his need for clear boundaries and structures and his tendency to try and "stretch" those boundaries and about his stubbornness. And about how much of ourselves and of Ron we see in Yon.
We ended the session with a clear plan how to help Yon to overcome this difficulties. We asked for a better explained time-table to help him know what's coming, they added music-therapy and some small group time in which he will need to share and talk more with other kids, we agreed we will all go with clearer boundaries, the "use your words" strategy when he wants something, and with teaching him the right phrases for asking for help and the times to use them.
His teacher also found us an outreach program that helps kids with sensory difficulties (including visual impairment) and they will help us understand better what he sees and how that affects his behaviour (they already told the teacher for example that children with low vision needs routine very much), and how we can help him better.
We will also have him undergo a full assessment that sees him at home, at nursery and tests him at the clinic, and will give us a fuller picture of all the sensory, visionary, behavioural aspects and will answer once and for all the spectrum question. This will happen in about six months (waiting list and the fact that Yon is not really a severe case anyway).
They both said the sentence that Hidai & I found to be in the heart of this whole thing - it's not about adapting the child to the environment. It's about adapting the environment to the child.
I should be happy. Or at least relieved. First of all because we hit the jackpot, we got a nursery that actually sees Yon. We got a nursery teacher that loves him and wants to do everything he can to help him and make life easier for him. We got someone that said that what we are doing for Yon is the right way to deal and that they will do the same. We got all the things we didn't have when we were going through much of the same with Ron. Second of all because the spectrum question has been nagging me for years, first with Ron and then with Yon, and I will get an answer.
But I'm not happy. I'm not really relieved.
Why? Maybe because we still haven't reach Acceptance (in the 5 stages of grief), and maybe because it's hard to admit that you are even grieving at all. Why would you grieve? He is not even really blind. It's not as if we didn't know he had a vision problem. He is a happy, smart, lovely and loved little boy. Why, in the name of God, can't you just leave it alone and go on? Why can't you be relieved? Why do you grieve???
I think we grieve mainly because we lost the Perfect. Yon will never be "Normal" or "Perfect". he will forever be "Special", my child now has a label, he will always have that label, he will always need assistance, he is now on at least one spectrum. I grieve because my fears or suspicions could be correct and he might still be on the Asperger spectrum (and it doesn't really matter if it's the high functioning side of it). We grieve because our lives, all of our lives, will never be the same, and even if we can't reach Acceptance, we still have to move away from Denial, which I find to be the cosiest of them all, it is so much nicer there in Denial-land.
I know it's just because everything is so new - the full diagnosis and the talks about the nursery problems, and with time and progress it will be easier and we will move towards Acceptance. But I also know that these feelings will never totally go away, and that since it's been 4 years since Yon was born and we still watch him all the time, I honestly don't think we could ever stop, we could ever just look at him.

I want to end this post with a thank you for everyone. For reading my long and sad stories, and especially for reaching out to me in all kind of different ways and letting me (us) know that you are thinking of us. Thank you for thinking of us and for being with us.