Saturday, May 16, 2015


“Life is a series of natural and spontaneous changes. Don't resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.” Lao Tzu

As winter has changed to summer, I have watched with delight as a bleak, brown, skeletal landscape transforms with pastel blushes of pink, purple, and blue into a dense, lush green. Animals have cover to protect their babies, birds build nests, eggs break open, and the whole cycle of life plays out in front of us.

It's been a lovely spring. So much beautiful change.

I've never been able to relate to mothers who want to freeze their children at a certain age, who sob in despair when putting their kindergarteners on the bus for the first time, who regret their adolescent's need for deodorant. I look forward to each new phase and milestone...because sometimes it takes us so long to get there.

Such is the life of a parent whose child has developmental delays. We want that next developmental step forward like a heroin addict wants another hit. We want to see those changes as evidence that all the therapies and schools and interventions are working because so much of our selves and our resources gets poured into each tiny step.

Children on the autism spectrum, however, resist change.

That must be the single biggest understatement I've typed on this blog in seven years. Consider this one example of dozens I could rattle off without effort. When Jack outgrew his favorite robe a few years back, he refused to accept a new one with tears and anger and fear that the old robe would go away, to the dump, or to someone else who wouldn't be Jack. After pushing as hard as seemed reasonable, I put the new robe in the top of his closet, where it sat for almost two years as he continued to wear the old one. Eventually, he accepted that the old robe simply wouldn't fit anymore and pulled out the no-longer-new one.

Wasn't I smart to buy too big a robe in expectation that it would fit when he finally accepted it? Mommies learn these sorts of tricks after a few years of shoes worn despite holes, coats worn with inches of arm showing, shorts worn until they are tight past decency. I sometimes wonder what teachers must think of me, but I am not bothered by their judgment. I don't have time to be bothered. Jack's resistance to changes in his wardrobe has turned me into a special ops warrior mommy, smuggling ill-fitting or worn clothing out of Jack's room when he's at school and rushing the reusable garments to Salvation Army that very day. Bags lying around or boxes in the back of my car might be inspected...with predictable results.

After years of adjusting to changes made as gently as possible, Jack is slowly improving and adopting new articles of clothing or shoes with, well, not ease, exactly, but at least not with panic attacks.

Some ignorant people don't understand why parents of children with autism don't make their kids do what needs to be done. Clearly, they've never seen an autistic tantrum. These aren't your typical, willful toddler tantrums...autistic tantrums are motivated by fear. Studies show the fight-or-flight response in people with autism is triggered easily by sudden changes or any other stimulus they perceive as a threat. Their bodies flood with adrenalin just like an impala's body involuntarily reacts to a lion chasing it.

You can't spank that sort of fear out of someone.

Jack trusts me...most of the time. He trusts me because I don't force him too far out of his comfort zone very often, because I didn't rip the too-small robe off of him and throw it away in front of him, because I didn't react to his tantrum at the eye doctor by smacking his butt and grabbing his arm and making him look in the green-flashy machine that he said hurt his eyes.

I choose my battles carefully. For the most part, I've learned how to push and when to pull back. I pay attention to Jack's tone and response to the idea of change. I let him work through his feelings in his own time. Do I get impatient and frustrated? Sure. Do I screw up and snap and yell? Yep. But most of the time, I focus on creating an environment that will help Jack overcome his delays in positive, nurturing ways.

It's exhausting.

On Palm Sunday, as we headed to church, Jack announced, "Mom, I'm too old for Ms. Kim's class. I need to move up." You see, Ms. Kim runs the K-4 Sunday school class. I'd been trying for two years to convince Jack he needed to move up to the 5th-6th grade class. At the end of 6th grade, he finally made up his mind.

I said, "I'll talk to Ms. Kim and ask which room you need to go to."

He said, "No, I'll do it."

And he did. He even waited patiently while Kim finished a conversation with another adult...which, if you have 12-year-old with or without autism, you know is a miracle itself.

That night, I asked Jack what he'd learned in Sunday School, and he immediately answered, "Some Jews gave Jesus away to be crucified." Let's savor this answer for a moment. It means Jack actually listened. His typical rote reply to my question--for years--has been "Jesus was born in Bethlehem." Yes, he learned that in Sunday school...when he was five. Now that he decided he was too old for the K-4 class, he appears to have also decided to listen. Yay!

When your child has developmental delays, the smallest changes signaling progress are embraced, cheered, celebrated. You learn to ignore the standardized test scores that measure how your child stands up against a million others, because that's just meaningless and depressing. Instead, you focus on the progress itself, and you find that there's a lot of joy in accepting the reality of it.

Moms who want their children to stay young don't know what they are asking for.

Lao Tzu says we should let changes come naturally, and Jack has taught me the truth in that. Change won't be rushed, and it won't be slowed. We can't control it. It

It's been such a lovely spring. So many beautiful changes.


  1. Wow, Susan - incredible post. You are a wonderful mom, dear friend! Your boys are both growing up, and becoming such handsome young men. You and George have been amazing, patient, and loving parents, mentors, and friends to them, and are helping them to mature with loving hearts, dignity, pride, and patience. God bless you!

  2. I love this post! Ditto everything Patti said. :)

  3. Wonderful post Susan. Makes me very grateful for what I have. You are doing an amazing job with Jack, never forget that.

  4. While my own boy isn't autistic (or otherwise delayed) I can completely relate to a lot of this! Especially the clothes, oy, the clothes. I've learned to only step in when it's a danger to his health (seriously, why would you *choose* to wear long pants and a long sleeved shirt when it's over 100 degrees??) or I find it truly offensive. Thank heaven he's only 9 - the teen years are going to be, hmmm, "interesting". I, too, struggle with understanding parents that want to stop their kids at a certain age/stage. I want to see him become a young man, a husband, a father! Never mind that I intend to spoil his children beyond reason and then send them home! :D


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