It was an odd thing to be asked really, usually people prefer the lines of ‘special children are born to special parents’, ‘I’m sorry’ etc etc.
It was actually quite refreshing!
In the never-ending slog of school developmental therapy, physio, hydrotherapy and so on it can be easy to lose sight of the child at the centre of it all.
Sam can’t walk, sit unaided or support him own bodyweight, and yes I would love for him to do all those things; I have no doubt he will, eventually, but the one skill he lacks that I would do anything to help him develop is speech.
You see, Sam is NOT silent.
Far from it at times, he can chat away in his own manner quite happily. But they aren’t words, only sounds.
And while sounds are useful to a point, they aren’t as useful as being able to communicate clearly with speech.
Sam can use some makaton signs, although only very simple ones as he is hampered by his limbs not doing what he wants them to, but he recognises what someone is saying to him when they use makaton.
He can indicate yes and no easily, if not as consistently as I’d like, and he can use switches.
And if I ask him if he loves Mummy, more often than not I’ll get a little grin and he’ll turn his head into me for a snuggle.
I know he loves me, but I long to hear him say it.
I have dreams about him learning to speak, about him being able to tell me how his day went, of what his friends have been doing, and what he’d like for his tea.
Sam not being able to speak means I have to have complete faith and trust in those who care for him when I’m not actually there… he can’t talk to me if he’s feeling lonely, or is something has happened that he is upset about.
He does let me know, but there is only so much that you can convey through signs, facial expressions and cuddles.
I’m not overly bothered if my boy never walks independently, but I would dearly love to hear him speak and to know what his little voice sounds like as he tells me about his day.
Who knows, one day I might… but until that day comes I will continue to work with him and help him as best I can, in the hope that one day that miracle will happen.