It’s been
pretty much forever since I’ve made a blog post but I’m due for one.
I’ve
recently had several dear friends tell me their child has been diagnosed with
various things. My heart breaks for each and every one of them. Knowing the struggle,
frustration and pain they are dealing with as well as their precious little.
What sticks
with me each time someone comes to me with this type of information, is how
frustrated they are with the inconsiderate and unkind comments from others. The
judgement, the misconceptions, the stigma of having a child with a “label” is
not a cake walk. No parent wants their child labeled; however, to receive
services they must have a diagnosis. Special needs doesn’t mean a burden to
society, doesn’t mean a failing parent, doesn’t mean anything other than that
child has needs that are special, special as in unique from their peers.
I frequently
say “but I’m sure they mean well” when sharing a comment someone made to me
with my husband. I’m not sure at what point I adopted this attitude. I don’t
know if I think and say this because the idea of someone saying something so
hurtful intentionally would be more than I could handle, or if I have just always
looked for the best in others (probably the former). I wish I had a better way
to encourage and build up my friends with special needs kiddos, I just want to
hug them tight and assure them they are amazing parents and doing the best they
can for their children. I’m sure being beaten up by the words of others makes
them constantly question their parenting, their ability to care for their
child, even the diagnosis they receive because I’m certain I’m not alone in
hearing “well he doesn’t look like he has autism” or similar phrases. I’m not
even going to deal with that comment, I just roll my eyes and mentally throat
punch them.
Often times
I wonder if the general population is aware of the difficulties and stress
involved with raising a child with special needs. I wonder if they spent a day
observing the life of a parent with special needs if they’d have more empathy,
compassion, understanding, patience and kindness. For my family personally, we
function much more like a traditional family due to the tremendous progress Mr
N has made over the last five years. Not exactly like a traditional family, we
still have IEP meetings, more frequent meetings with the school and his
teachers, his team of therapists, etc. Doctors and dentist visits are not
typical at all, to have a cavity filled, he needs sedated. He still can’t sit
through an entire meeting without needing some sensory input, which usually
involves him sitting in my lap, lots of deep hugs. Looking at our family, you’d
probably not notice it, you may think “well he’s too big to be sitting in mom’s
lap” or “why is she holding him? He can stand/walk”, but in reality he’s
getting much needed sensory input from these things. It’s incredibly physically
exhausting to hold, lift, and carry a fifty pound child for two hours. However,
Mr N has progressed so extensively and come so far, it’s easy to forget
sometimes that he does have needs that are unique to him.
Some things
to think about before making a comment about a child’s behavior, they could be
having sensory overload and screaming is the only means they have to cope with
their overloaded system. While the parent is trying to calmly deal with their
child, imagine that parent got little to no sleep the night before because
quite often child with special needs are not great sleepers, now imagine that
child also has a very limited diet due to sensory issues, so that parent didn’t
just make one breakfast but possibly two to accommodate for the child’s need. Now
imagine that parent carefully picking clothes for said child that won’t bother
him/her, this most likely involves extra time and energy while shopping for the
child, as well. While you’re thinking about all the extra effort the parent(s)
have put into getting the child ready for one day, the child likely had at
least one meltdown during the process which required consolation from mom or
dad. Now add in siblings with or without special needs. If you’re wondering
when a good time is to comment on a child’s behavior, the answer is never, it’s
not your business. See how simple that is? You’re welcome. Also, never
appropriate to comment on someone’s parenting or their decisions regarding
anything ever.
I could go
on, but I think I’ve made my point. Instead of belittling and tearing each
other down, how about offer a helping hand, a hug, a kind word, or a word of encouragement.
Being kind costs nothing.