A few days ago, I was talking with a couple of colleagues at
school. One of them teaches a class with
an autistic little girl, and she was thrilled because the girl actually came up
to her and tattled on another child. She
was just so happy to see her engaging in conversation and speaking up for herself. This led us into a conversation about how we
approach autistic children differently from neurotypical children. By the way, when I use the word neurotypical,
this simply means people that are not on the autism spectrum.
This led my colleague to ask a question that I think many
are wondering but are afraid to ask, “What is it like to raise an autistic
child?” I thought I might try to answer her question here. Please know that I can only speak for my own
autism parenting experience, because each family has its own unique set of
circumstances. There is a saying in the
autism community that if you have met one autistic person, you have met one
autistic person. I know that many children
on the spectrum display much more severe behaviors than what we deal with on a
daily basis.
So, with that disclaimer, I
give you…
10 Ways I Parent Differently Because My Child Is Autistic
1)
I let
my kid jump on the bed…
…or at least I did before we bought him a
trampoline. I learned when Ben was very
young that he needs to move- all the time.
On this same vein, I never take away his physical outlets as a
consequence. Ben has sensory needs that
need to be met. If left unchecked (as in
if he sits too long without a motion break), he can become overstimulated,
anxious, or dysregulated, which can lead to intense emotions. Jumping helps. So does crashing into a mat. So does swinging. And yes, we have an indoor swing in the playroom
for this very purpose. Many neurotypical
children enjoy swinging, jumping, and crashing.
For Ben, it is a necessary as eating, breathing, and sleeping.
2)
I
pack him the same lunch every day
Yes, I want my child to have variety in his
diet as much as the next parent, and we do encourage him to try new foods as
much as possible. However, there are
only a limited number of foods that Ben will eat. Part of this is because he is bothered by
foods with texture. Part of this is
because he likes routine and consistency.
This is why he requests the same cereal every morning when he gets his
breakfast at school. God bless the cafeteria ladies who save him back his
favorite flavor of juice when they are running low. This is also why I pack him
essentially the same lunch every day. We
are working on the food thing as best we can but it is not easy, so yes, we
pick our battles.
3)
I
discipline differently than most parents
Early on, I learned the difference between
a tantrum and a meltdown. A tantrum
happens when a child decides to throw a fit to get his way. You can spot a tantrum because a child is
watching for your reaction and is in control of the tantrum. The child can stop a tantrum at any
time. A meltdown occurs when a child
becomes overwhelmed by sensory input or emotionally dysregulated. A meltdown is much more emotionally intense than
a tantrum, and once a child reaches a full-fledged meltdown, they are no longer
in control. The meltdown is just as
scary or more for the child than it is for those watching it happen. So, yes, my husband and I have rules and consequences for my
son, and we try to be very, very clear about our expectations. Our son’s behavior is almost never a result to
defiance but rather presents itself as an emotional outburst (often tears) as a
result of frustration sensory overload, or an unexpected change in routine. Therefore, while we give consequences, we are very, very gentle with him and try to give him tools to handle his big
emotions. When his emotions ramp up,
then I have to make myself very, very calm. Which
leads me to…
4)
I
spend most of my money on squishy balls and play-doh
Now I know that some of you are thinking
that your kids like these things too, but for my kid, they are a VERY big
deal. One of the strategies that we have
taught Ben for dealing with his emotions is to squeeze a squishy ball. He has a huge collection of them for this
very purpose, and heaven forbid one pops, rips, or breaks. We have social stories ready for this very
purpose (Sometimes our toys break…)
Play-doh is another necessary tool. It builds his hand strength, which helps him
with fine motor tasks like writing. One
of his favorite things to do is open a brand new container of play-doh and
inhale its unique smell. Recently we
learned to make play-doh using Kool-Aid and he has been in heaven experimenting
with different scent combinations.
5)
My life
feels like one big movie script
Many children on the spectrum who are
verbal like Ben engage in something called echoalia. This means that they parrot back phrases that
they hear others say. Sometimes they may
repeat a word or phrase right after the speaker says it, but in Ben’s case
it is often stored away in his memory for later. Often called scripting, Ben can memorize
lines from his favorite books and movies and uses them during conversations and
playtime. I know that his teachers think
that he has a vivid imagination (which he does), but they probably don’t
realize just how often he is channeling one of his scripts. For example, when he says “We regret to
inform you that chapter three was a dream”, I know he’s quoting “Bad Kitty Gets
a Bath”, or when he pretends to hack up a hairball in class (sorry Mrs. B), he’s
acting out a scene from a chapter in “Bad Kitty School Days”. Often he will use lines from these scripts in
conversations, which he did tonight when he called Daddy back upstairs after
bedtime and asked, “What about goodnight kisses?” in a perfect Agnes voice from
the movie Despicable Me (Daddy did forget the kiss, and I knew Ben would be
calling for it). Ben has been scripting
for a very long time. In fact, I
remember making a “cheat sheet” of Ben’s words and phrase for my parents (who
live out of town) one summer when they came to watch him for a few days.
6)
We
live our life by rituals and routines
Every parent knows the importance of having
consistency and routine in their child’s life, but for Ben this
predictability is his rock in what can be a very chaotic and confusing world. I am reminded of this any time I deviate even
slightly from our rituals. Bedtime is a
great example. I’ve never taught him to
do this, but I swear my kid can tell time.
If I try to start the routine a few minutes before the regular time,
he’ll point to the clock and protest, “It’s too early!” After teeth, books, and a story of what’s
happening tomorrow (our social story which prepares him for the events of the
next day) and prayers, I say the same phrase, “Mommy will be on Mommy’s
bed. Ben will be on Ben’s bed. Have a good night sleep and I’ll see you in
the morning.” There’s almost something
sacred about our ritual. He needs it to
feel centered and secure.
7)
I
celebrate the little things and find joy in ordinary moments
Most parents take for granted that their
child will walk, talk, wave “bye-bye”, say “I love you,” ride a bike… For some parents, each of these milestones is
a long time coming, if ever. So I try to
never, ever, take for granted the progress that Ben makes. Like the first time he had a real
conversation with another person. Or the
time he started a game of hide-and-seek with some kids at the playground. Or the moment when he snuggled up to me in
the chair and leaned over to kiss me on the cheek . These moments take my breath away.
8)
I let
my kid have an iPad
Yes, I said it. My kid has had an Ipad since he could barely
walk. I know that some view this as
indulgent but I have seen Ben benefit from the programs it offers. We limit the amount of time he uses it, and
lately he hasn’t even asked for it at home in the evenings because he is busy
with art projects or checking on his trains. However, I do rely on it when we
have to wait for extended periods of time at the doctor’s office or if we take
a long car ride to a therapy session.
And, on the days when he has to stay a long time in the after school
program, it gives him something to share with the other kids. The coolness factor certainly doesn’t hurt.
9) I honor my child’s requests whenever possible
When Ben communicates to me that something is too much for him, then I listen because I’ve seen what can
happen when I fail to heed his warning. Like the time I kept him in a dark theater
when he was petrified of the huge dragon
puppet and then wouldn’t go into another dark place for months. So if Ben doesn’t want to go on a ride at Disney, I listen and honor that request.
This doesn’t mean that he always gets his way. If his safety is at risk or if there are existing plans that
cannot be altered, he does have to learn to deal. But, if I’m able to give him choices, I
always do. And if his request is a reasonable one that I can honor, I always will,
because I want him to know that he
can always communicate his needs to me and that they will be heard and respected
10) I compare my kid to my kid
Another thing I stopped doing very
early is worrying about what my friend’s kid on Facebook is able to do that my
kid can’t. I’ve learned it’s much more
productive to measure Ben’s progress against himself. And while this doesn’t mean that I don’t have
goals and expectations for him, I’m not going to stress if he’s not making the
most soccer goals or if he doesn’t make captain of the debate team. If he gets those things, it’s definitely a
bonus, but I’m cheering for the progress he’s making, because he always gets
there in his own time.
…and, in case you were wondering, here are ….
10 Things I Expect of my Autistic Child
1)
I
expect my child to have manners
This includes everything from
saying “please” and “thank you” when he receives an item to waiting for his
turn to talk in a conversation. We’re
still working on these things but he is getting there.
2)
I
expect my child to pull his own weight
Ben is responsible for picking up his
toys, doing his chores, which include taking in and out the trash and feeding
the dogs. He carries his dishes to the
sink and puts his clothes in the hamper. Ben is my helper at school and often runs errands with me at the end
of the day. Heavy work is a form of
occupational therapy and helps with keep him centered. Plus, it’s great for character building!
3)
I
expect my son to show kindness others…
…and I hope that the world will show
kindness to him in return. Ben is one
of the most loving people that I know.
4)
I
expect my son to work hard and do his personal best
Life can be extremely frustrating
for him because it does not cater to his style of learning, but this is not an
excuse to give up. Every day is a lesson
in perseverance and problem solving. When
his Legos break or he can’t get the glue bottle to work or the lid off a
container, I expect him to find strategies to deal with this, even if it’s as
simple as asking for help. This does not
mean that I am going to push him to his frustration point. This also does not mean that I expect him to
act like every other child. My job is to
provide him the supports that he needs to be successful, and then to gradually
take these supports away when he is ready, which leads to…
5)
I
expect him to learn independence
I have full confidence that there will come a
day when my son will be a successful, contributing member of society. I remind
myself on a daily basis that, even though it takes longer, I have to let him
learn to do things on his own. Whether
it’s styling his own hair or giving himself a shower, he’s slowly learning the
skills it takes to be an independent little man. And I could not be prouder.
