Misunderstandings Of The Special Needs Parent

Misunderstandings

I have been thinking about how often kids with autism are misunderstood. Either their pronouns are reversed or language a bit jumbled or not there at all. Maybe their behavior seems nonsensical, or uncontrolled.  

Those who work with kids on the spectrum say that no one can really understand what they are thinking, especially those who are nonverbal.

There is a lot of speculation in why they do what they do which leaves room for even more misunderstandings.

I have also been thinking about how I have been misunderstood in regards to my kids with autism. We have been told many things over the years like:

"You are being too strict, let them be kids!"

"You are too lenient, you need to be more strict!" 

"Why haven't you done this or that intervention or diet?"  

Or, the hardest to hear, "Maybe you should send him to a group home?"

Sometimes telling about the behaviors we see at home doesn't translate accurately with words. When we show the social stories we've created about an issue, even ones we've discussed extensively, we have heard:

"He does THAT?" 

And we are left baffled: what did they think we meant?

Misunderstandings are a part of life. However, these days we have social media that allows misunderstandings to abound even more.

We see tiny snippets of others lives posted on Facebook, or Twitter, or on a blog and we make assumption of what peoples lives must be like. 

But that isn't the full story.  

The full story can't be known until you are IN the story-- in real life. Until you see the story in action day after day, you can not begin to know. Even then, you can't completely understand.  

All we can do is continue to try to explain, continue to teach, reveal our lives, and forge ahead. And most of all, pray for interpretation!

For those of us who avoid conflict like the plague, misunderstandings cause extreme stress.  When they result in relationships being hurt, the stress is akin to a volcanic eruptions of the heart.  The hot lava runs through our veins making every fiber feel the pain of the broken relationship. 

I am one of these people-pleasing, conflict avoiding people who just wants everyone to get along and understand each other. So when my world is filled more full with conflict, I am pressed to learn better how to cope: 

How to keep on teaching about my kids and autism, regardless.

How to keep pressing on, anyway.

How to be authentic, nevertheless.

How to extend abundant grace, in spite of it all.

How can I expect others to understand something as puzzling and complex as a child with moderate to severe autism, ADHD, and anxiety?

How can I expect to be completely understood by another?

With these thoughts on my mind this past Sunday, I was listening to Matt Redman's Your Grace Finds Me. The lyrics were still swimming in my head as I entered church and we sang one of my favorites, Just As I Am, by Travis Cottrell. (Click the links for YouTube videos.)

I love it when this happens: when lyrics merge in the dizzying highway that my mind can sometimes be, and collide into a deeper meaning... a meaning for the immediate.

"Just as I am" means being 100% completely understood. 

To be known just as I am? 

Only God can do that--and Grace finds me there.

My kids being understood, just as they are?

Only God can do that--and Grace finds them there.

Understanding someone else just as they are? 

Only God can do that, but I can pray for understanding.

So as I continue to press on in the tasks set before me, I extend the Grace that found me.

Through Christ, I can do that.

The challenge is to continue trying. 

Striving to understand each other, and to be understood, offering grace along the way.

Offering praise to God, too, because He made us all so unique, interesting and complex

We are His work of art.

Only God can understand any of us just as we are,

for only God knows just who we are. 

The best news? Is being completely understood, I'm welcomed with open arms, 

Praise God, just as I am!
 

Psalm 111:2 "Great are the works of the LORD; they are pondered by all who delight in them."

 

This post was originally posted May 31, 2014 on Treasures In The Dust as "Thoughts On Being Understood".

Did You End Up On An Unexpected Train?

 

Floundering Fish
Like a fish out of water

 The Unexpected Train Ride

Carrying twins for my 1st pregnancy experience was one way I broke the mold of typical. Carrying those twins to 39 weeks, when all the books end at 34-36 weeks? That’s a whole other story.

I had no idea what to expect that last month, except to know that it probably wouldn’t go that much longer…but it did.

I longed for the books to tell me what to expect. I may have even begged the books to add a few more chapters to include those weeks!

Even though my pregnancy didn’t happen according to the books, I wanted to read about it anyway. The fog of the future would seem clearer with knowledge, accurate or not.

But no one had written those chapters.

I should have known that this would not be the last time there was no instruction manual in my parenting journey.

Having kids on the autism spectrum that didn’t match “What To Expect The Toddler Years” or later, for that matter, left me floundering like a fish in a new tank.   I wished (and still do) for a manual on how things will go in the future.

I especially would like a manual for my 9 year old, who has baffled everyone who tries to help him—he has a “doesn’t want to” problem:

• Doesn’t want to change.

• Doesn’t want to eat real food.

• Doesn’t want to follow a routine.

• Doesn't want to wear clothes in the house.

• Doesn't want to sleep on a bed.

• Doesn't want to be quiet and calm when everyone else is asleep.

He certainly knows what he doesn’t want!

He has the explosions and meltdowns that sometimes seem trigger-free.  He has an out-of-sync sensory system that bobbles from one extreme to the other without warning, baffling those who work with him.

There is no manual for him. There is nothing that says what I should do when he does that.

I long for something to give me a heads up on what to expect in the next year or two.

I mean, the teen-age years are coming, for crying out loud!

 

Full Speed Ahead
Full Speed Ahead

Perhaps you have experience this too? Are you are going full speed on a parenting train ride and you don’t know where this train is going?

I have heard parents of typical kids say they wish their child came with a manual, too.  They spend many hours reading all the parenting books and searching for answers.

Often, the advice in those books is not right for our child because it is general advice for all children.

We end up with a false sense of clarity and expectation.

Sometimes that feels better than not knowing at all, but it’s an illusion.

The Upside

The benefit of having a different child, is that we learn a bit earlier that there is only One who really knows our little one.

The Master Crafter himself knows all the ins and outs and He is the one that gently guides us as we raise our children.

No illusions, just perfectly crafted guidance for our child.

I want to share with you a scripture that I have been praying for my 9 year old.

You may wish to substitute his name with your child’s name. The picture this verse paints in my mind induces a beautiful calm amidst all the uncertainty:

“You promise to tend your flock like a shepherd.  Gather Steve like a lamb in your arms and carry him close to your heart. And, just as you promised to gently lead those that have young, teach us, as parents, how to lead, and guide, and care for Steve. (Isaiah 40:11)

The twins first stuffed animal was a lamb
The twins first stuffed animal was a lamb

 

What is your story?

Donald Miller talks a lot about how well we learn from each others stories.  I wonder what your story is?

I would love to hear from you!