1. The first one is easy – PITY!!! My son does not want your pity. He does not feel he is less than any of us, so pitying him is far from helpful, in fact it is damn right insulting. the awkward exchange when someone sees your sons disabilities and stops there, not looking beyond, not looking to see your boy. This is mainly followed by the participate cocking their head to the side and muttering “Oh bless” at times this is followed by “At least he is happy” which they say pretending this is to bring comfort to myself, But you know well and good this is more a mask for their own confused feelings to cover their own awkwardness and feelings of pure pity.
2. You just don’t see him. At times I wonder if my son has borrowed Harry Potters invisibility cloak. Many people talk over him to me, Talk to his sisters but ignore him completely, Basically talk to everyone but him. This is just as bad even when you are talking about him, or saying complementary things about him. Guess what he likes to hear them himself. He is just such a sociable boy and just loves attention. It is ironic that many people ignore him and talk to his sometimes painfully shy twin sister, who also would rather you talk to her brother. He calls out for attention, Nothing is more hurtful than watching him get frustrated when he realises he is being ignored.
3. He doesn’t want to be treated like a baby! He may be developmentally wise younger than his years and his disabilities restrict him in ways that obviously frustrate him. But he is in no way a baby. He can’t walk, talk, move or express him self like his peers, but he tries. We and all his ‘team’ truly believe his understanding is much greater than he can show us. How frustrating must that be for him, How frustrating must it be people him just do not realised he is willing and able to understand and end up treating you like baby? It may take a little more work to understand him, and come into his way of thinking, but I promise you once you enter his world it is magical, you will not want to leave. On a similar note he doesn’t want to cradled or held like a baby either, being cradled is very frustrating for him. Owen likes to be, as much a physically possible, in the middle of the action. This is where you can hugely help to support him. Any way cradling him at this size, with his tendencies to go into extension and throw his body back in frustration, is pure painful for the holder.
4. Quite similar to the above point – Just because he is non verbal does not mean he has not got a lot to say. He in fact has more than a lot to say. He may not have the words but he has facial expressions, body language and some sounds to get his point across. If you take the time to learn these you will be rewarded tenfold. Also he is trying all different sorts of communication using all sorts of technology. At the moment he is working on communication switches.
5. Lastly I do not have to justify my son’s existence. We didn’t choose for him to be born so early, to be so sick to result in him having damage to the brian. I have been trolled about this very subject. I have been told my son is a drain on society, and has no quality of life and much, much worse. I have often been in tears when hearing the baby Charlie fight for life, obviously mainly because i feel for Baby Charlie and his family, but silently because I heard many people discussing the case describing someone who can not talk or walk are just existing am not living. This is beyond hurtful. I can promise you now, My son lives life to his fullest, he exceeds all that is expected of him, He gives 100% each day. He is the happiest child i know ( though like us all has his moments) You can not say that about many people.