Please, Don't Say That - A Year's Worth of Questions and Comments That Never Go Away
- “She still isn't talking?”
- “I watched that Temple Grandin movie, I get it.”
~No. When you've met/seen one autistic person, you've met/seen ONE autistic person.
- “Why do you let her do that?”
~To say that I let her do
anything feels insulting whether or not the person means it to be.
There are many things Bella does that we’re not sure that even she
has much control over.
- “I bet she could do _________ if she really wanted to.”
~My daughter has made
amazing progress over the last year and I know quite certain that she
strives everyday to push forward. There are also things I know that
she wants to do that she just can’t, yet.
- “She won’t look at me when I talk to her, that’s pretty rude.”
~ Says the total stranger.
I know many typical kids that don’t like to talk or make eye
contact with complete strangers.
- “She’ll grow out of it, she’s just stubborn.”“She just needs a good spanking!”
~In my opinion and
experience, spanking does nothing to reinforce positive behavior.
Autistic or not, when people say this to us, they usually don’t
have their own kids, thankfully.
- “You’re not trying hard enough to get her to do _______.”
~Please. Most of our days
are dedicated to helping our daughter gain new skills and keep from
regressing from skills she’s picked up on. To have someone say this
feels like a slap in the face.
- “At least she can _______.”
~Yes, we are very thankful
that our daughter can do the things she can do but at the same time
we mourn the simple things that she can’t. Like talk.
- “Jenny McCarthy cured her kid. Why don’t you just do that?”
~I think I've made my
opinions on this woman pretty clear for the most part. Her son never
had autism. What she did to help him is great, but it's not effective
for autistic children. Not only that, but she’s personally made
millions of parents terrified to vaccinate their kids against deadly
diseases and illnesses. In my opinion she’s done more harm than
good for vaccinations and autism.
- “Why do you take her out if she might have a meltdown?”
~Why do you take your
child with you if there is a chance they might cry or holler for
something while you’re at the store? Why do you take your kid to
the park if there is chance they might fall and get hurt? There is no
real difference here. She’s our child. She goes where we go.
- “She looked me in the eye. She can’t have autism.”
~ We've worked for nearly
a year on Bella’s issues with eye contact and there are many times
when she still doesn't do it. If Bella makes eye contact with you,
you should consider that a great compliment. It’s most likely
because she finds your facial features symmetrical and pleasing. She
actually loves to study faces, but when you start to talk to her,
she’ll turn away.
- “It’s not that hard, just ____________.”
~Said, most of the time,
by parents who do NOT have a child with autism.
- “I can’t believe you had more kids!”
~People think that the
risk of having more than one child with autism is extremely high and
very likely when in fact, there is only about a 5% chance subsequent
siblings will be effected.
- “She’s not potty trained yet?”
~People usually ask this
question when they see that she’s wearing a diaper. If she is
wearing a diaper, then clearly, she’s not potty trained yet. Like most other things, we're working on it and it's a slow and tedious process. She's up to ten full seconds on the potty and that, to us, is great progress.
- “You need to put her on some medication!”
~It’s been suggested to
us by doctors, family, friends and even one of her therapist, that we
put Bella on medication. We just don’t feel comfortable with doing
that. She’s only 2 1/2. We don’t know what putting her on any
medications are going to do to her and the only way we’d feel
totally comfortable doing it is when she gets older and we can tell
between her age appropriate behaviors and the behaviors that are
triggered by her autism.
- “Are you sure she has autism?”
~Bella has had 27
different evaluations. She’s been monitored by three neurologists,
two speech therapists, a physical therapist and an occupational
therapist. She’s under the care of a regular care doctor, a
pediatric psychologist and a pediatric behaviorist. So, yes. We’re
sure.
- “At least you get special treatment everywhere you go.”
~I’m not sure where this
assumption started but I wish that it would die. People are under the
impression that because Bella has autism, we somehow get special
treatment. In reality, most people in public don’t know. We don’t
get red carpet and free samples, we get dirty looks, snide comments
and a few times we've been asked to leave the store because Bella
was crying. Trust me, it’s pretty much the opposite of special
treatment.
- “You made up the autism to get attention.”
~Yes, a “family”
member accused us of this and all I can say in response is that
autism isn't something that I, as a parent, could fake. It would be
the child having to fake it and I’m pretty sure an 18 month old
can’t fake something like that.
- “What a brat!”
- “She’s just spoiled.”
~Two things that we've heard from family and strangers alike. Granted since family has
learned more, they understand much better but strangers who say this
are usually insulted that she doesn't respond to their waves of
hello. Hint: most kids don’t like strangers anyway.
- “God doesn't give us more than we can handle.”
~I’m not a religious
person and I understand the sentiment behind this saying and in order
to not offend anyone, I’m going to keep my opinion on this to
myself, for now. All I will say is that sometimes it IS more than I
can handle. Even if Bella was an only child, there are days that get
really bad.
- “Make her come give me a hug/kiss.”
~ We've dealt a lot with
family members telling us to make her give them a hug or a
kiss and the fact of the matter is, we can’t. She’s not doing it
to be mean and trust me, a 2 year old isn't going to hurt your
feelings on purpose, but we aren't going to force her to do
something that makes her uncomfortable. Again, in the defense of
family, over time, they've learned more about how autism effects
her and have come to understand her behavior a lot better.
- “You need to learn to control your kid better.”
~Yes, stranger in the
supermarket who’s kid is running through the aisles, yelling at the
top of their lungs and knocking packages of toilet paper from the
shelves… I need to control my kid who’s sitting a cart,
crying because she’s anxious and overstimulated.
- “Don’t cater to her, when she’s hungry enough she’ll eat what you give her!”
~While this might be true
for most kids, for Bella it isn't When Bella refuses to eat, we
have to try our best to find something that she will eat. Her vitamin
supplements can only do so much. If we left a plate of food in front
of her that she doesn't like, the food would give in before she
does. It’s not a stubbornness issue, it’s a texture and sensory
issue. The way the food feels will literally make her sick.
- “She’ll get tired of screaming and fall asleep eventually.”
~You’d think so, but no.
After a lot of trial and error, the only thing that really helps
Bella sleep (and stay asleep), is a combination of melatonin and deep
body pressure before bedtime. Like the food issue, if we don’t
intervene, she’d never go to sleep. Granted I guess after a day or
two of not sleeping, she’d pass out from sheer exhaustion, but we’d
never want her to get that bad.
- “Is that her actual diagnosis or something you came up with?”
~I always thought this
meant, “did you get her evaluated” until one lady accused us of
“giving her the diagnosis” ourselves and just kind of going with
it. It took a year on a wait list, but Bella has an official
diagnosis.
- “…but she’s so pretty.”
~While I appropriate and
agree that my daughter is very pretty, I never understand why this is
the ‘go-to’ thing to say when people find out that she has
autism. It’s like they can’t believe she’s pretty because she’s
autistic? Or do they say it to make us feel better, like, “Oh, well
at least she’s pretty.” I don’t know.
- “I feel so sorry for you.”
~Please don’t. There are
families going through much more hardship than we are. We have a
beautiful child who’s happy, healthy (for the most part) and kind.
There are people out there everyday struggling to have a child or
struggling with a much more devastating illness in their kid. We've learned to live our lives a little differently than others, that’s
all.
- “How do you do this everyday?”
~We do what any parent
does. We get up everyday with our children’s best interest in mind.
We do what we have to do to make sure they stay safe, healthy and
happy. We raise our kids and love them unconditionally.
- “Do you get jealous of people with normal kids?”
~There are times when we
mourn the child we thought Bella would be, but we’re not jealous of
other people or their kids. We have other children and we love them
too.
- “Just take the bottle away, she’s too old for that!”
- “I cant’ believe you still let her (drink from bottle/sleep with a blanky)”
- “It’s because she’s a middle child.”
~Most children have a
comfort item. We find nothing wrong with that at all. Sometimes I
think that people focus too much on the autism and forget that she’s
still only a 2 year old. The comfort items will go eventually and for
right now, if they help her feel safe and comfortable, what’s the
harm?
- “Did you breastfeed? Formula is poison!”
- “Did you bond well when she was born?”
~I breastfed Bella for a
few months. She did use formula, not rat poison. As with all my kids,
we bonded very well when she was born. Then again, both of these
questions are irrelevant considering millions of babies are fed
formula and a mere fraction of them develop issues like autism.
- “She doesn't seem retarded.”
~That’s because she’s
not. Another widely spread misconception regarding autism is that
it’s the same as Down’s Syndrome. While a lot of children with
Down’s Syndrome have a form of autism, the same isn't said about
children with an ASD. Autism is also NOT a mental illness like some
want to think. Autism is a neurological disorder.
- “It’s just a phase.”
~No it’s not.
- “Did you read the latest on how to cure autism?”
~ I've read all of them
and even though the prospect of finding a cure is alluring, none of
the published “cures” have been proven to actually work. While
some treatment options may help some kids, not all children with
autism are the same or react the same way to the same treatments. As
of right now, there is no cure, even though there are many, many
doctors, pharma companies and researchers that would love to take
your money and sell you unproven promises. Right now, the best, most effective way to help a child with autism is an early evaluation, therapy and hard work to help them improve. It's not a quick fix like some want, but it is proven to help.
- “Are you sure it’s not your fault?”
~Having this asked to you
after spending months and month working through issues of guilt is
like having a hot poker shoved into your eye. It took me a very long
time to stop blaming myself and to stop coming up with ways on how it
could be my fault. Am I sure that it’s not? No. I only say that
because I don’t know WHAT the actual cause is and until I do,
anything is possible. I am pretty sure that nothing I did caused my
daughter’s autism and I've finally stopped blaming myself for it,
but there will always be that tiny little voice in the back of my
mind that continues to look around for a reason.
Sometimes these questions can really hit a nerve and sometimes I know that the person asking is just trying to help. Sometimes though, you just want someone to tell you that you're doing a good job.
