Tuesday, April 29, 2014

Upside Down

I have always described our family's life of living with autism as a roller coaster ride.  The kind of roller coast that has really high hills but that also have really low points.  The kind of roller coaster that turns upside down at times, sometimes at times you don't even expect.

We got turned upside down yesterday and didn't see it coming.

Jared has been having a great year in school.  He loves high school. 
And when he is having a good year, we also have a good year.
We were coasting along, enjoying the scenery, enjoying the ride
the roller coaster flipped us over.

Jared got sick while at school yesterday.
That is bad - but is not a huge deal.

The flip comes in the fact that he didn't tell anyone that he didn't feel well.
He didn't tell anyone he was sick.
He didn't tell anyone he needed to help.
He didn't tell anyone he needed to leave class and go to the restroom
(his anxiety levels are out of control when it comes to using a restroom that is not at home)
And since this issue was a hidden issue for the most part, he spent part of his day before his sickness was realized.

Letting someone around you know that you need help/assistance is a skill that Jared doesn't have.
And it is a skill that he needs to survive in this world.
One we concentrate on at home, school and the community.
But one that is so very tough for Jared.

When he got home and I tried to talk about it with him, he sobbed.
I couldn't understand and he couldn't completely verbally say what happened and why, but he did say the words

This type of day breaks my heart COMPLETELY.

It is a reminder of
how much autism impacts his life,
how much autism will continue to impact his life,
how much anxiety he deals with on a daily basis,
how much I want to protect him from having to deal with issues like this.

So last night was one of those rough nights for me.
And today, we get back on the roller coaster.
We ride this roller coaster everyday - not because I want to.
We sit down in my seat and get ready for today's ride.
Not sure what today will bring.
Hoping that today will be a smoother ride, so that we have some time to recover from the last one.

Friday, April 11, 2014

Making a choice

My attitude affects my actions.  My actions affect my attitude.

How we look at things affects how we act / react - even if we don't realize that.
The way act / react in situation affects my attitude with similar situations in the future.

This is so true when it comes to my son and his autism.

I am VERY aware of the things that Jared struggles with.

His social issues are evident.
His communication issues are evident.
His ritualistic routines are evident.

I can easily find myself in a place where that is my focus.
A place where I look at my son, and my thoughts are about all the struggles and difficulties his autism presents.

And when I land there, that affects my actions ---

I do too much for him
or said in another way -
I don't allow Jared to do things he could do for himself

I speak for him
or said in another way -
I don't allow Jared the opportunity to communicate

I choose for our family to not do certain things
or said in another way -
I don't give Jared the chance to expand his community and his coping skills
I choose not to risk it
or said in another way -
I assume he will fail.

I do these things to protect him...
or to prevent meltdowns...
or to make it easier...

However, I have to remind myself, that when I do this,
I am also communicating to him and others around him that
"he can't" or "isn't able".

So today I remind myself to ASSUME THE BEST.
- Assume that he can participate in and contribute to everyday life
- Assume that he can be successful
And let my actions show my thoughts.

But also ASSUME THE BEST in others.
- Assume that they will have good hearts and be welcoming
- Assume they will accept Jared for who he is
And let my actions show my thoughts.

I know... I know the adage about what happens when we assume things...  but I need to believe that maybe that will not apply here.
I have to try and believe that there is good in the world.
I have to try and believe that even when things don't work out like I wished they would, even when things fail, even when we get hurt.... that tomorrow is another day.

I also know it is very easy to land in the place of "just being realistic".
But I land there way too often.

For today, I am going to work on my own self.
Work on my attitude about my son and about my attitude about others and their interactions with my son.
For at least today, I am going to make the CHOICE to assume the best.

"The ultimate barrier facing children and adults is not disability, but others' attitudes, low expectation, and more - assuming the worst.  We have to power to eliminate that barrier; we can make the choice to assume the best." Kathie Snow