There’s a certain glassy optimism in the nursery manager’s eye as she smiles broadly and whispers, ‘but aren’t children with additional needs just so… special?’ Well, of course they are, yet there’s a huge taboo around admitting that sometimes – just sometimes – special needs parenting isn’t all that special at all.
Both my boys (aged four and nearly 3) have significant special needs and the life we lead now, as a result of that, is vastly different to the parenting journey we imagined when we first saw that positive pregnancy test. Just this morning I have been scratched, bitten, prevented a smearing episode and coached my eldest through a Thunderbirds related meltdown (don’t ask).
Until I watched the recent BBC comedy drama There She Goes, I honestly felt like we were the only ones experiencing a family life of this particular chaos. Just like in that show, we are learning to laugh at the frankly ridiculous situations we end up in (my eldest once squashed a poo into a sippy cup) but sometimes it isn’t funny and it isn’t special. It has taken me a long time to admit our life is not always perfect and can be a downright slog.
I understand that it is difficult for most people to know how to react when someone tells you that their child has special needs but here is a list of things NOT to say:
– “He looks OK to me.” Well, that is because he is OK, he just also has additional needs.
– “Oh that’s a shame.” No, it’s not a shame, it’s just how things are.
– “You must be a hero / supermum.” We do it because we love our child like any other parents and because we have to.
– “Special needs children are a gift.” The child is the gift not the disability!
Want to know the perfect thing to say? “That must be hard, the boys are lovely though.”
Everyone likes to hear their children are lovely and it is really wonderful to have your struggles acknowledged.
In some ways special needs parenting is not all that far apart from any other parenting; the milestones might be celebrated at a different time, or different goalposts used altogether. It doesn’t matter what diagnosis your child has, the first time they let you know that they love you (say it, use picture exchange symbols or even just a look), now that is special