We have learnt to expect (and could probably guarantee if asked) that if we do anything too exciting with our daughter that the event will be sabotaged by very difficult behaviour either during or shortly after. By very difficult I do mean violent, uncontrollable aggressive behaviour. I am not talking about a little bit naughty because I am sure all kids can be a bit difficult when over-stimulated but Girl has no control or self-regulation, she has the emotional capacity of a two year old.
Girl enjoys but at the same time cannot cope with parties and theme parks. Her brain is wired to run on a high level of alert at all times and things such as large crowds, high noise levels, too much sugar can over-stimulate and send her into meltdown but like all kids she wants to do these things and who are we to deny her these childhood thrills? So we mentally prepare ourselves and run with it. Hot chocolates, ice-creams, sweets, a trip to the gift shop on the way home. Is she spoiled? I don't think so or I hope not, I like to think we are just normal parents, we fought hard for our girl and by golly (did I just say by-golly?) we dreamt of being able to do these things as a family and give our girl a happy fun-filled childhood and she truly does enjoy them.
This weekend we celebrated both my husband's and son's birthday's with a two-day trip to Legoland with a large group of close family. I have to say that we did have a lovely time and nothing that happened afterwards can take away from that time, it is still a good memory but the behaviour from Girl started to very, very slowly slide by the the second day. Not terrible or partcularly noticeable behaviour by anybodies standards including my own, just warning signals, a refusal to comply, cheekiness, a distorted voice here and there, demanding and petulant behaviour. Some of this sounds pretty normal and appropriate but with Girl I know that when we see all of the behaviours on the list - particularly 'the other voice' - that they are signals that her brain is starting to melt as generally she is a very nice little girl that displays age appropriate behaviours, certainly no angel but manageable most of the time.
The biggest warning signal for us is refusal to comply, this is because Girl is needing to feel some control over her life. The way we manage this is to ask of her as little as possible, keep instructions to a minimum, help with everyday tasks. She may refuse to brush her teeth, put her coat on, get dressed and so we have to try to coax, negotiate, assist as much as we can, which admittedly is not at all easy with a two year old that also has needs.
It's very easy (even for us as her parents) to forget that Girl is not being difficult for the sake of being difficult, that she is sending us signals. After all, she looks and sounds like any other child of her own age. You wouldn't be able to pick her out in a line-up and say 'yes that girl has a brain disorder because her brain was traumatised as a baby'.
However, knowing that it is going to happen does not make the behaviour any easier to deal with and no matter how much we brace the shock of a violent meltdown can actually feel like a body blow and this morning the meltdown that we were expecting arrived after a total refusal to get dressed.
I live in hope that one day we will do something really exciting for our daughter and she accept it and enjoy it with no anxiety. We all need to have some hope.