Rebecca, 27, blogs
about life as a mother to four children (two with special needs) at A Mum Doing
Her Best. Today, she talks to us about her daughter’s undiagnosed condition and
some of the comments and remarks she receives about it.
As a parent you are always going to experience someone who
wants to give you unwarranted help or advice. This doesn’t stop when you have
disabled child. All of a sudden everyone you bump into knows of someone with a
similar condition, or worse condition and that we should be trying this or that
or the other.
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My daughter has an undiagnosed condition, the consultants
think they know which family her condition belongs in but they just keep coming
to dead ends. No one knows why my daughter is the way she is, they can’t rule
out life-limiting conditions, they can’t really say anything. She finds certain
things impossible to do, some things hard and other daily activities easy. I have noticed that people tend to suddenly
become a medical expert when they find this out.
For example, I mentioned to someone a few months ago that
the doctors were considering a rare form of Muscular Dystrophy and her reply,
“I know someone with proper Muscular
Dystrophy she hasn’t got that.” Yes, she used the word proper, she is not
medically trained and it made me feel so small.
I have so many people on a weekly basis saying:
“There’s nothing
wrong with her, my [insert child’s name here] was slow but they all catch up by
the time they are at school.”
Or my favourite:
“My friend’s friend’s
friend’s cousin’s son, he has [insert a condition] and this means he is
extremely poorly, you should be grateful that your daughter hasn’t got anything
serious or terminal.”
I have learnt everyone is suddenly medically trained and
knows better than my daughters team of consultants; I have learnt how to deal
with these comments and to smile, nod, then walk away; that people give advice
that actually could harm my child. Telling me to “just give her solids, nature
will kick in and she will learn to eat it.”
I have also learnt I am a mother bear and will do anything to protect my child. I will teach her the qualities of grace and she will grow
up knowing her differences are beautiful and what make her so special, so that
if she ever has to deal with the negative comments of strangers she will know
how to respond.Without a diagnosis or physically seeing some sort of
equipment or a limb missing, people assume my daughter’s condition is not that
bad - that instead of asking about the condition people will tell me what to do
or what not to do.
Have you received any
strange, bizarre or rude comments from strangers about your disability? How did
you respond? Share your stories with us below.
