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".

Are You Missing Out?

The Most Interesting People On Earth

Are You Missing OUt

 

 

 

 

 

 

 

If you were a fly on the wall at the grocery store while I was shopping, you would probably see me scan the check out isles for the shortest and fastest line to join. I’m usually in a hurry, trying to fit too many things into too small of a time. But this particular time, my hurry was halted by a missed interaction.

There were two good options for a fast checkout that day.  I choose the line on the right which placed me in line after a person with some visible special needs.

This man, I’ll call Ben, looked to be in his mid-thirties, though he was hunched over his grocery cart like an elderly man would do for support.  He also had trouble talking, like his mouth would not cooperate with his brain and he couldn’t form the words he wanted to say. It didn’t stop him from trying to communicate, though.

He stood in front of the half-sized ’10 items or less’ conveyer belt as he gestured for me to go ahead and put my things on the belt. I couldn’t take him up on his offer because his order hadn’t been rung up. It sat on the belt right where he wanted me to place my items.

“Thank you,” I said to him with a smile, “but I need to wait for your order to move up before I can put my things on the belt.”

He gestured again in his charming way, for me to put my things on the belt. Ben was very polite and gentlemanly, smiling and gesturing with a bow, as though he were a professional butler for a large castle in England.

“Thank you.” I say again. “After your order moves up, I will put my things on.”

Unsatisfied, Ben turns toward the conveyer belt which just started moving. It was finally his turn.

The man standing in line in front of Ben (who was a helper of some sort for him) noticed our conversation and said, “The lady said, “Thank You!” in sign language, and then he told him it was time to go.

They left before I could tell them that I also know sign.  I had no idea the man was hearing impaired!

I felt like I was cheated of a great opportunity. 

I had missed out. 

I had missed out on a chance to connect to someone who is especially interesting.  I wanted to call after them and explain that I know sign language and could I please say hello to Ben. But given the busy environment, crowds and noises, I decided against it.

My strong reaction of disappointment following this lost opportunity caught my attention. I had been thinking a lot about the value of life—all life, no matter how severely disabled or how marvelously gifted.  

Subtle hints (and sometimes not so subtle) of people with special needs being less valued than someone deemed a “productive member of society” permeate our culture, or communities, and sometimes, even our churches.

And it is a great loss. 

People with special needs have an extra dose of interesting mixed into them, but they rarely get spoken too.

They bring great joy to their families and friends, yet they rarely get to share that side of themselves to “outside people”.

 

They rarely get to have meaningful conversations with others, because they are overlooked. Or worse, avoided.

I guess I was so disappointed because to Ben and his helper? I was just like everyone else. And I don’t want to be like that. I failed to break through and let Ben know he was a person worthy of getting to know, and that he was especially interesting because he was made differently in the image of God. Because of this, he reveals different facets of God to everyone he interacts with. 

And.  I . Missed. Out.

We worry about missing so many opportunities—whether for our career, our hobby or interest, or for a trip, a party or event, or even for a sale at the store.

We hoard and gather as if we will never have that chance again.

We overload our schedules trying to do it all, something we can never accomplish so we set ourselves up to do everything poorly.

And all this time we spend hustling around trying to stuff too much into lives to avoid missing out, we actually do miss out on the one thing that really may go away—people. 

We miss out on relationships with each other because of our hurry and worry about missing “more important” opportunities.  We can't have it all. Opportunity costs something.

There is nothing more important than the people set before us.

Relationships are invaluable, precious gifts from God to us. Relationships are important to God—so much so, that He gave his son in order to have a relationship with you and me.

We are the joy that was set before Him at the cross. (Hebrews 12:2)

Coffee Time

(Your turn to share your story in the comments):

When was the last time you connected with a person with special needs?

What especially interesting things did you learn or notice while engaged with a person with special needs?

Do you tend to hurry through life trying to ride every opportunity and miss out on some important ones?

How do you view the value of those with special needs?