The What-If Questions: A Letter To Special Needs Moms

 

The What-If Questions LetterDear Special Needs Mom,

I wonder how you are doing? I often find myself thinking of you, when life for my kids with autism is thrown all up-in-the-air again, like it is now.

I remember how the what-if questions rocketed through my mind when we first found out about my son’s autism. And tonight, again, the questions shout deep from my mind and loud in my ears.  As I lay down, these questions alert the exhausted part of me which needs the rest deep sleep provides, to rise up and attend to their answers.

Only now, the what-if questions are about my son going to a new school. His new school is not only new to him, it is new to the area where we live. It is a school made specifically for children with autism who are unable to be successful in their current school district placement.

This school has so much to offer, including one-way mirrors (a parents dream!) so we can observe without interfering, medical and behavioral interventions, a highly desirable sensory OT room, full time therapists, full school days year round with only 2 one-week breaks!  And they can address some of the medical questions we have been unable to get answers to: Does he have seizures? Does he have full-blown Tourettes in addition to autism? Does he still have the same food allergies? Is there something else medically going on that is causing him to have such a hard time?

We have been on a difficult journey getting to this point.  I never would have thought it possible but now that we are here, one week away from the official transition there is that part of me that emerges when my head hits the inviting pillow and wonders:

What if he doesn’t like it even more than where he is now?

What if he feels tricked or cheated out of a summer break?

What if he misses Mrs. T —the summer school teacher that loves him?

What if the bus issues don't resolve but rather intensify?

What if, despite everything, he just plain hates it?

Sometimes we simply need to stick together, encouraging each other, you know? This parenting children with autism thing is somewhat new territory.  We are like the forerunners in the rising wave of children on the spectrum coming through the educational system, paving the way for those to come behind us. There are so many unknowns, which leads to so many what-if's.

But what I do know is true (Philippians 4:8), is that having Stevie in this new school is beyond what we ever thought we'd be able to have for him (Ephesians 3:20).  When the school presented the idea of sending him there, we kind of felt like laughing like Sarah did when God told her she was going to have a baby at her age! (Genesis 18:10-12). Her hearts desire was promised even though it seemed impossible. Nothing can stop the will of God. (Isaiah 14:27)

And nothing will stop His will now, either.

And you know all those interrupting what-if questions?

Statistics say the chances very high that we worried for nothing. Even better, God says he has our kids best interest at heart (Romans 8:28) and He has the ability to carryout his plans! (Philippians 1:6)

It will all work out for the good like He promised. It just sometimes a little scary in the in-between times, while we wait.

Right now I wish we could share stories, about the times we have worried so much about how things will turn out, but then God shined through with direction and solutions? Those stories give rise to faith and encouragement to the heart. (Hebrews 10:25)

Until next time,

Merri

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?