Monday, September 10, 2012

Tale of the Blue Shoes

In July, while we were doing the bi-yearly mass shopping trip on our way home from TBA, I tried to convince Richie that he could have some new tennis shoes.  Nothing doing.  Not ones like brother, like Daddy... not even Thomas ones!  He was so attached... so loyal... to his old tennis shoes that he wasn't interested.

Then I remembered that in a fit of cluelessness I bought Ryan a pair on clearance last year that would fit Richie now.  They'd been too small for Ryan then, and he didn't like the closure. So I didn't make him wear them, obviously, but instead put them in the closet for Richie for later.  They're a size bigger than he really needs now, but I thought they'd be insurance if he got home and decided the blue ones were too little.

We got home and tried the blue ones, and he insisted they were just fine.  Okay then, son.  Wear 'em.

One week of school later, he barely keeps his shoes on if he doesn't have to.  Hmm.

So yesterday, while we were out shopping after a long trip to the zoo after church, I found some Lightning McQueen shoes in his size and handed them to him.  After an initial nose upturn, I convinced him to try them.

Guess what?  He didn't want to take them off.  Even with the stretchy string between them and the tags still on them, he wanted to wear them because they felt so much better.

As much as I'm tempted to giggle at him and shake my head, I know better.  Because he acts just like his mother.

There are so many things I have had to do that I didn't want to do because they were different... or just different than I thought they should be... and I've kicked and screamed and stomped and refused until I was backed into a corner.

Part of having an autistic child is learning.  Learning and accepting and changing.  Being planned but flexible.  Planning your heart out, then being ready to chuck the plans in the nearest lion-shaped zoo trash receptacle when the carefully planned outing goes screamy.

Please don't mistake those explanations for mastery in my life.  I'm still learning.  I still have fits of wanting to just do something easily.  You know, the same old thing.  But that's not what I need to do.  I've grown past that.

When you sign up for therapies (speech, occupational therapy, ABA, etc.) or even start school with a kid like Ryan, you are given suggestions for life at home.  So often when we heard these suggestions, they were overwhelming at best.  At worst, they make you want to slug the next person who throws out a suggestion.

The hardest of these times?  When someone suggests that there's something up with your child, and it might be something on the autism spectrum.

I can't tell you how bad I wanted to tell the people who first spoke those words to go jump off a cliff.  Now, I'm glad they did.

If you're just getting a diagnosis, or if someone has just suggested that you might check into these behaviors, the first thing you have to do is stop.


Yes.  Chill.  Take a deep breath.  Look at that sweet face.  And tell yourself over and over that no matter what label they give him, he's still the same kid.  She's still the beautiful baby girl you were so anxious to meet.  No matter what anyone tells you, this kid is created wonderfully.

Next, remember that these people know what they're talking about.  If you have reason to think they don't, fine.  Seek someone else.  But whatever you do, don't run from this.  Denial isn't going to help anything.  Early intervention is truly key.

It's going to take a long time to get a real diagnosis.  For about two years, it was "we think he might have something on the PDD (Pervasive Developmental Disorder) spectrum."  We were thinking Asperger's.  We started this process at 2.5 years of age, and it wasn't until spring when he was 5 that we got a diagnosis.  Then, it was buried in the middle of a paragraph, in about the third page of a multi-page report.  Maybe if we'd had more money, lived closer to more resources we'd have had a diagnosis sooner.  So what did we do in the meantime?  That's a lot of time.

It is.  And not a day should be wasted.  We gradually accepted that there was something up, and we had to get to work.  We listened to therapists, we worked with him, trying to integrate all the things the experts told us as best we could.  No, we didn't use everything.  But the stuff we did use helped immensely, and much of it can be found in our daily life even now.

Yes, it hurts to be told your child is developmentally delayed.  It's going to hurt.  And if there are people telling you that it is something you did, that you or your wife drank too many Diet Cokes or that you don't love your child or don't spend enough time with them, blah blah blah, don't listen.  Smile and nod and keep plugging away.  I've heard different folks on different websites talk about mourning the child you thought you had, and while that makes a certain amount of sense, it's not quite how I'd explain it.  You will mourn your expectations of parenting at times.

But make no mistake... this child is not lesser in any way.

If you will work to embrace this way of life, recognizing preconceived notions and putting them aside as need be, God will use your experiences with this child and other people as their personalities and lives rub against your family's life to give you life more abundant than you can imagine.

But you have to be willing to let go of the blue shoes.

The longer you hang on, the more they will pinch.

As you let go, as you take up the schedules, routines, techniques for speech, OT, and every other little thing under the sun; as you reach out and learn about what makes him tick and how you can smooth the road, it begins to feel better.  You stretch out, make new habits, and begin to see how much you've outgrown the before time.

It's a long trip.  But you don't have to make the whole thing in one day.  You'll go through more growing periods, changes, and you'll begin to see progress.

You're going to have days when it gets hard.  There will be times when you wonder if there's been any progress at all, and you long for the days of innocence when you were brand new parents with brand new, white-picket-fence expectations... even as I write those words my eyes well.  But God made Ryan.  God is sovereign.  And at the end of the day, that is where my heart rests.

That little guy who people warned you would change your life?  Yeah, they were right.  If you let him, God will use him to make you a better everything.  It won't be easy.  But you have the internet, books, support groups, and the same God leading you who has led you all along.

Easy?  NO way. Worth every minute?


Don't believe me?  Look at this face.

Thanks be to God for Mama's little Firework.  

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