February 23, 2012

I’ve just returned from taking Lex to yet another specialist appointment – this time a paediatric specialist, who I was told is “the Miracle Man” – someone who could really help us understand what we are dealing with. As far as Miracle People are concerned, I have noticed a lack of specialists who seem to have any idea about the challenges parents face when dealing with a speech delayed child – but that’s another story. After a discussion and examination, he said Lex was neurologically fine, physically strong, and that intensive speech, OT and behavioural therapy are the most important things we can do right now – which is what we are doing. He said the main need is to focus on his speech, and with OT and behavioural therapy we can help him manage his emotions – in particular his frustration when he is not understood or struggling to achieve milestones. So that’s all good and what I’ve known all along. However, I went there today hoping he could help us understand why Lex’s behaviour can change so dramatically for a day, a week or a month. This dramatic change in behaviour (while challenging to deal with and the cause of a lot of problems, especially in the school environment) seems to precede a growth spurt or language development spurt I’ve noticed. The doctor agreed, saying he’s trying to integrate new learnings and abilities, but this can cause a lot of frustration and challenges for a child. The conclusion? Lex needs time and intensive therapy, after which the doctor said he’ll probably catch up in 6-12 months. We see him making amazing progress every day, so we know he’s going to be fine – albeit a pain in our arse at times. At the end of the appointment, he said: “your son is obviously intelligent, curious and maybe a little more active than “normal,” but keep doing what you’re doing, because I expect he will be fine.” Thank you doctor. For once I met a really nice guy who didn’t seem to feel the need to put a label on my son, and who actually listened to what I had to say. However I’ve come back feeling annoyed because I knew this all along and my time is precious. But I also feel vindicated because at least a specialist has supported what I’ve always believed to be the case. Finally I feel frustrated, because I know my son – I deeply know and understand him – but schools and other institutions will only take the advice of a specialist, who may spend a total of 30 minutes with them, providing a prognosis that may or may not be correct, and that is more valid than five years of day-to-day exposure to a child? I appreciate that some parents wear rose coloured glasses where their children are concerned. I’m not one of them. I want him to be OK desperately, but I also want to know what is going on so I can help him in the best possible way, so maybe, just maybe, the parents’ point of view is valid in these scenarios too? There’s a crazy thought huh? As I’ve said before, ALL I can do is believe in Lex and do everything it takes to help him catch up and move a little bit closer to “normal” by societies standards, because then I hope his life can be a little bit smoother. However let me be clear – I definitely don’t want Lex to be “normal” because why would I? I want him to be, in fact I encourage him to be, exceptional, in whatever way his heart desires. But fitting in a little bit sure does make life easier. And so what do we do now? We continue loving, supporting and believing in our son, while also feeling grateful that we can actually afford the therapy he needs right now. My heart goes out to parents dealing with a similar situation without the means to support their children’s additional needs financially. That makes me/us some of the lucky ones. Yours, without the bollocks Andrea