Our daughter has special needs. Yes, special needs. She is no more special than your child but her needs will greatly out number your ‘normal’ child’s needs. You may choose to call her other words but for future reference, ‘special needs’ is the pick of the bunch, covering a broad group of many different conditions such as cerebral palsy, autism and Down syndrome.
Other commonly used words are ‘disabled’ or ‘disability’. These words have a grey area and can unknowingly offend. The grey area is, for instance, you call an autistic child ‘disabled’. A Simpleton’s definition. The parents of the autistic child may take offence because their child only views the world differently and is otherwise perfectly ‘able’. Another instance where you might offend would be to those who know what a spade is but prefer to call it something else. They object to the words disabled and disability because of the ‘dis’ in front of them.
Then there are people like me. We have no objection to the words ‘disabled’ or ‘disability’ as our child does not have the ability to do every day routines on her own. She requires the assistance of a carer to get going every day. I am not blind to my daughter’s struggles and I will call a spade a spade but will support those who prefer not to have all needs categorised in one ‘disabled’ group. Despite the different opinions on the words, their needs and our carer roles remain the same.
Caregivers are grateful people but there are some sentiments that ‘non-underworld’ members should avoid saying to us. We know these words are spoken from the heart, said in good faith and with sincerity but what you may not know is it can be annoying and even offensive to us.
What not to say to the parents of a disabled child
“How is [insert child’s name] going?” We understand this is a completely innocent question and you genuinely want to know, but the answer comes loaded. Don’t be surprised if you get a response like, “He/she is fine, thank you”. This is not because we don’t want to talk about it, we do, but maybe not in depth with you. We don’t want your “I’m sorry” or “I wish I could help” offerings. Our preference is not to constantly talk about our special child. We are normal people who would like normal conversations. We will, however, talk at length – and even laugh – with other ‘underworld’ families about our child as they know and understand the situation we are in. They are living the same life as us.
Your compliments of “You are such a good parent, what you are doing is so wonderful. He/she is so lucky to have you as a parent” and “you are doing an amazing job…” really annoy us. We do an ‘amazing job’ not by choice but because we have to. If we didn’t, it would be neglect. This is our parenting. It may be different to yours, but it is the way we need to parent to meet the needs of our child. We are no better at parenting than the next parent.
Finally, and most of all, please, please, please don’t say to a special needs parent: “[insert higher being] knew you’d be great parents so [higher being] gave you he/she to look after”… All we hear is “… you deserve this…” Everything said is lost in translation. To us, your well wishes are nothing but words trying to sugar coat our situation. This is offensive. Please don’t talk to us about being the chosen one. We weren’t chosen. It is what it is.
We are private people but we do appreciate your summer BBQ invitations, we would love to go out for coffee and would really like have you over for lunch. Just understand though, when we are together, we don’t want your sympathies, just your company.