I say "yes, yes" to this list of "no-nos"

My daughter C

For some time now, I've been urging formulation of a distinct term for children with profound disabilities. There's a crying need to distinguish theirs from the garden variety of disabilities with whom they share very little. ADHD, learning disabilities, Autism Spectrum Disorder, Down Syndrome, mild to moderate cognitive impairment, or physical disabilities are a breeze compared to the disabilities we grapple with. Yet  most current writing relates solely to those categories and is irrelevant to us.

This disconnect from the wider world of disabilities probably contributed to my reaction to this list of "taboo" questions which appeared on the Parentdish site. Here's a sampling:

"I'm sorry to hear that"

• The Parentidish take: "Having a child with a disability should not be viewed as a disappointment or loss that requires an apology," says Emily Giordmaina, a counsellor at the NSPCC helpline. Remember there is absolutely nothing to be sorry for, agrees Neil Taggart, operations director at FitzRoy, a charity supporting people with disabilities. "Suggesting that there is, focuses on the negative and implies that sympathy is required."
• My take: "I'm sorry to hear that" is a comment I'd welcome. Too many relatives, acquaintances and even friends just don't get the enormity of our burden. "I'm sorry to hear that" demonstrates to me that the speaker does "get it".

"I don't know how you cope"

• The Parentdish take: "Sometimes nor do we, but these boys are our world and they are the priority, not us," says Paul Atwal-Brice. "Instead of speculating, it would be more constructive to offer support. Indeed, if society was more aware of how difficult it can be as a parent of a disabled child, then there might be more accessible help available." For Julie Ashton, the most grating thing about this phrase is that what the person is really doing is pointing out that her life is so different, which "I don't really want to be reminded of." "What you are doing here is being disrespectful not just to the child, but to the parent too," says Taggart. "It's suggesting that the parent is 'unlucky' and there is also a sub-text that your life is better and happier." Stop for a moment and consider that this family might enjoy their life just as much as you and feel just as "lucky" as you, in spite of their perceived difficulties, he says.
• My take: This supposed blooper is right at the top of my list of acceptable comments: "Hey, you do grasp how amazingly difficult it is to care for C?" is my thought. Why should I hide or deny it? Why shouldn't I be pleased when somebody else commiserates. There are too many other folks who don't; who have expectations and make demands as if raising C. is akin to raising any other child. It's nice to occasionally rate some sympathy and awe.

"Is it a degenerative condition?"

• My take: The truth is I don't believe I've ever been asked this one but I really wouldn't mind it. The asker is obviously more thoughtful than most and has expressed her curiosity about my child's condition sensitively. The evil here eludes me.

"Have you tried...?"

• The Parentdish take: "Let's face it, the chances of you knowing more about the disability than the child's parent is pretty slim, so it can sound downright rude to assume your ideas are more advanced, even if you mean well. "We have tried most things and researched every possible reason why our son was born with his condition," says Andrew Gates. "We have been on countless training courses, read hundreds of books and met many other families like ours."
• My take:  I fully understand why this question could infuriate. In other contexts, I myself would bristle at it. But with C., I really don't mind it. First, I can confidently answer, "Yes, I have tried that..." because we have tried just about every option both conventional and alternative. Second, I welcome ideas I've never heard of because, after all, what have we got to lose? (I only learned about medical cannabis as an epilepsy treatment from another mother/blogger.) If the suggestion being made isn't appealing, well, nobody is holding a gun to your head. Just give it a miss.

I'd love to hear what you thought of these "no-nos". Are you with me?