To any “newbies out there” sorry to tell you this, but you will get this all the time. “There is nothing wrong with him, awww look at him, he’ll be fine”. It would seem that advising that “my son has brain damage and has been diagnosed with cerebral palsy and the left side of his body doesn’t work properly” means something different to others than it does to me (and to my son!). People say these things because they want to try to make it not seem so bad, and they think they are comforting you. To those people who are guilty of this, please know – in reality this can make a person angry and even more upset than they previously were, because it makes you feel like you are perceived as negative and focussing on the disability. It also makes you feel like all the stress and worry that you feel every second of every day, in their eyes, isn’t warranted. These people may try very hard, but often they simply don’t understand. That is not their fault, they are not in your shoes, and they have not experienced what you have – however a little thoughtful consideration before speaking wouldn’t go amiss…
The other thing friends, family – and strangers – will do, is compare your child to some other child that will have had something completely different going on – for example, my son has been compared to kids that were simply slow to walk – who eventually did walk and had no reason other than developing a little late, and they say “he’ll do it soon, the kid I knew didn’t walk til he was two, but one day he did it and now he runs everywhere”. Yes, Harry hopefully will walk, with the help of a plastic boot, walking frame, and three years of physio, but he has a brain injury and it causes his muscles to not work the way they should, and he won’t miraculously “come good” like that other kid. Explaining it to them doesn’t make them understand, it just makes them think I am negative and pessimistic.
There is a lot more to deal with (emotionally) when you have a special needs child than just helping the child. You will work your backside off to do all the stuff he needs, and you will feel worn out from it – and then you will get some well-meaning person tell you there is nothing wrong. It will drive you insane. You need to know the facts and you need to be realistic if you are to help him. Outsiders, even close family often don’t really understand this.
I have learnt that it is very important to tell those people who are close to you if and when certain things upset you. Explain it clearly, and even if they don’t agree, at least then they know. Because you will get this over and over for a long time, and you need to make sure that your “support people” know how to support you