Author: autismlighterside

I was watching the movie “Wonder” this weekend.  Although it did not totally mimic my life, there were certainly a lot of similarities between the movie and my life.

Just to recap in case you haven’t seen this movie.  There are two siblings – an older teenage daughter and a younger son who is about 10 years old.  The son was born with a facial deformity.  He has had many surgeries from the time he was born until the time that the movie starts where he is beginning grade 5.  The older daughter is in high school.  There are many things going on in the movie and there are many challenges that the son has to deal with.  The mom had to quit her job so she could stay at home to help her son through these numerous surgeries that he had to endure.  She gave up everything to attend to her son’s needs.

The son had been home schooled his whole life and how he is entering mainstream school.  The main theme of the movie is about the son adjusting to school, being around peers, making friends, and being rejected by peers because of the way that he looks.

On the first day of school, the son comes home and is very upset but he doesn’t want his family to know about the hard day that he had.  After dinner, he retreats to his room and eventually both parents end up in his room trying to comfort him.  His sister comes up to go to her room where she witnesses the scene of both parents trying to comfort her brother.

No one pays attention to her.  In fact, they don’t even notice her.  She’s had a rough day at high school too.  Her best friend since kindergarten has rejected her and she feels alone, but no one seems to care.

There is another scene in the movie where Olivia (the daughter) Mom asks her to take the day off school so that they can hang out.  They are having lots of fun watching a movie, eating junk food and laughing when her Mom gets a call from the school stating that her son is sick.  The Mom goes rushing off to the school and their day together is ruined.

This resembles my life so much. It doesn’t matter that my son has autism.  When I truly look at the amount of time and attention that our daughter has received from me and how her brother’s issues impact her life, it’s on the same wave length.  She always gets to be “second” if there is an urgency.  Because she is older, she can manage.  She’s clearly been short changed.

This makes me more empathetic of her situation.  You see I love her more than anything in the world.  I would do anything for her.  I want to spend time with her, especially without any interruptions.  Does it happen?  Almost never.  Is it fair?  Absolutely not.

Is this my fault or her fault or her brother’s fault? No  It is nobody’s fault.  It is just the way it is.

Or the way it has been in the past.

I want to change that. I’m trying to change that.  It’s tricky though.  You see she’s a teenager and anyone who knows teenagers, even at the best of times, they don’t want to be around you.

Is having a sibling with autism difficult? Yes.

We will always try to make both our children happy and give them as much time as we possibly can.

The movie opened my eyes to the feelings of my daughter and this has made me more aware.

As a parent, if I could change certain things I would.  I know that I do and have done my very best, although sometimes when I look into her eyes, it’s not enough.  And I dream about our life when it was just her and I hanging out all the time and about how happy we were back then . . . before autism.

My hopes and dreams are that someday maybe she will understand and forgive me for not being enough for her.

Is your child on a special diet?  Is it difficult to manage?  Does it take a lot of extra work on your part?

Our son is on a special diet.  He does not eat gluten, dairy, soy or sugar.

Sometimes when I am driving, all I see is fast food places – McDonalds, Subway, Pizza Pizza, Mr. Sub.  You name it, these are on every corner.

Then I start thinking about all of the places our son can’t go or eat and the list is very long.  When you watch TV, all you see is ads for all of these things as well.  The other night, when I was watching TV, almost every commercial was about food.

I started thinking that we are surrounded by food, dessert, candy, holidays that focus on all of this stuff.  Why aren’t there more healthy places?  Why is everything always so focused on food?  You just finish one holiday like Halloween and then you are onto Christmas.  The candy and the desserts – there is no escape from it.

I know that in every day life, our son is excluded from things where food is involved.  Church, school, scouts to name a few.  In fact, the other day we were leaving church and this very nice lady asked me why I didn’t go and have a snack.  I told her that my son could not eat anything here.  I never eat at church either just because I don’t feel right about doing this when he can’t.  That’s just the way it is.  I don’t even give it a second thought anymore.  I always bring his own snack with me wherever we go and he’s fine with it.

But sometimes I honestly get mad and sad about this.  Why is our world and our life so much about food?  Why can’t there by more inclusion when people have allergies?

I don’t have the answers.  For me, it’s just an observation.  I also wish it wasn’t like this, but I am also not risking our son’s health and the progress he has made with healing his body by letting him participate in things that will make him ill.

It’s too bad because kids are just kids and they shouldn’t be segregated by what they can’t eat, but it happens every day.

Another example is school.  The school wonders why our son doesn’t stay for lunch.  Every time there is a field trip that is going to be all day, one thing I have to consider is his lunch.  Because he eats gluten and dairy free bread, the only way it tastes good is to toast it. So I have to consider the food aspect when signing him up for a trip.  What will he eat?  Since his diet is somewhat limited it makes things more complicated and sometimes he is not able to participate because of this.

How can we make positive changes and change the mindset of people?  How can we avoid exclusion from social activities because of food? Right now I don’t have the answer.  I have some ideas, but I will need to work on this one for sure!

During the summer, I decided to take a step back and really watch and listen to my son.  There is always so much noise in our daily lives and we can’t seem to escape it.  It’s everywhere.

We are at home and the TV is on.  Someone is listening to music or talking to someone else on the phone. The phone rings.  The dog barks.  The list goes on and on.  We go out to a store and there is more noise.  The traffic is noisy.  School is noisy.  Everywhere just seems so noisy.  Even going to the beach is noisy at busy times.

I realized that our son thrives on quiet, peaceful places.  I do too.  He enjoys being able to just be.  Up until this summer. I didn’t truly understand this fully.  When I watch him and I am with him, I realize how much fun we have just doing nothing at all.  We could be at our cottage swimming or laying on the dock (my personal favorite) or canoeing and it’s just heavenly!  I thing re-grouping and just being sometimes is very important.

As I watched him this summer, I noticed how relaxed he was becoming just being able to be. . . and how much more he wanted to do the fun noisy activities after he had a chance to just be.

I noticed that when there is too much going on that his coping mechanism is to retreat from the activity.

I think we our son there has to be a good balance.  In order for him to be able to engage and participate, he needs his time.  It’s incredibly important and I vow to make this part of his daily routine going forward.

As I reflect on daily life for our son, I realize that he has a lot going on in his brain at any given time.

From the moment he awakens, until the moment when his eyes finally close, there is always “noise” in his brain.

The average person has a lot going on all the time as well.  As adults, we are better equipped to regulate these things, prioritize them in our heads and skip over the “not so important stuff”  to move onto the next things.

From some children and teens, it’s easy for them to focus on one thing at a time and even if they have a lot going on, they are able to handle it.  I think that’s why a lot of teenagers can talk to their friends for hours or play video games for long periods of time.

For some, this is almost impossible.  Especially if you throw autism into the mix.

I know just by looking at our son, when you can engage him and when you just need to leave him for a bit so that his brain can process some of the “stuff” that it needs to.  I have found and failed many times when trying to teach him or have him complete his homework when he is not in the “learning space” to do it.  It’s just a waste of time.

I don’t know that for kids on the spectrum if the “stuff” ever goes away but I do know that by creating a relaxed environment with relative calmness that the brain can be slowed down and allow for time for focus and processing.

New information can only go in when the brain is ready to receive it, no matter what kind of schedule we are on.

I have very painfully learned that if our son is not able to slow his brain and is not ready to receive new information that any homework that day just isn’t going to happen.  And I have accepted the fact that is totally fine!

I know that when his brain is ready and open, there is so many new things he can take in at lightning sped and that is truly a remarkable thing for someone with autism.

We just need to remember to slow down!

We always want our children to be on a certain schedule and do things at a certain time.  Eating, sleeping, homework, extra-curricular activities, going shopping.  There’s always something.

I’m not trying to minimize schedules because they are important for everyone.  They help keep us focused.  Especially for children with autism – a schedule is a life-saver as it allows them to know what to expect so that they do not have high anxiety.

Have you ever thought or tried an experiment (probably best done on a weekend or holiday) where you go by your child’s agenda?  You take their lead and see where the day takes you?

If you haven’t done this, I encourage you to try it out sometime.  You may be surprised by what you find out.  I’m not saying this will be all good for you or all bad for you.  It may be a little bit of both.

I tried this out in the summer.  I just blocked off some time and did what my son wanted to do.  Not what I wanted.  At times, he wanted to do some things with me and at times he wanted to be alone.  Then there was also some time where we just laid in the sun together in total silence with our feet touching.  It was heavenly and it is one of the happiest moments with him I can ever remember!

So try throwing out the schedule once in a while and see what happens!

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