Last week my husband and I went to an autism support group meeting in the town we moved to a few months ago. Fourteen of us sat around a table, introducing ourselves and telling our stories.
One of the moms couldn’t get through her story without crying. Her son had only been diagnosed two months ago. I teared up with her, remember those early weeks of not even being able to say the word “autism” without feeling overwhelmed.
“He lines up toys.”
“He never stops moving.”
“He can’t tell me what he wants. He can’t even point to things.”
“He runs away from me when we go places.”
The rest of us nod our heads in empathy again and again.
James was diagnosed five years ago. I read the books, consulted Dr. Google (and real doctors, some of whom were less help than Dr. Google), and started all the therapies that were recommended. I saw autism as a problem to solve, an enemy to defeat. Jenny McCarthy would call me for advice. We were going to be one of the miracle cases.
The mom who had just become a special-needs mom asked questions about what our kids could do. Can they talk? Can they read? Do they sleep at night? Do they eat a variety of foods? Are they out of diapers? She wanted us to assure her everything would be ok. That the worst case scenario she was creating in her head wasn’t her future. She would be a miracle case mom.
But I couldn’t honestly paint that picture for her. James’s words are mostly echolalia. He can’t read. He doesn’t always sleep through the night. He doesn’t eat meat (except for Chick fil A nuggets but who can blame him for that favorite?). He still wears diapers.
Her worst case scenario is my normal.
On our way home my husband and I talked about those early days and how far we’ve come. It doesn’t seem like a long journey to others I’m sure. It has taken years to travel inches instead of miles.
But we are so thankful for each and every inch. For each new word. For new foods tried. For hours he does wear undies instead of a diaper. For grocery store trips when he easily holds our hands and walks through the store without a meltdown. When he stops running when we ask him to and comes close enough for kisses.
We’re witnesses to a miracle every day, even if we’re the only ones in on the secret.
Be encouraged if you’re still in worst case scenario mode. Your definition of normal will evolve. You’ll find joy in moments you can’t even imagine. Your definition of miracle will change.
A few years from now we can sit at that support group meeting and tear up with a new mom who can’t see life past the diagnosis her child has just been given. But we’ll smile at each other, knowing that our worst case scenario turned out not so bad and her’s will too.
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Beautiful and so true! Thank you for sharing
It’s like you have been spying on us 😉 so well said
I too love this. I sat down at my computer to get current with the few posts I hadn’t read- telling myself that I was not going to cry this time. Nope. Can’t do it. You reminded me to thank God for the little miracles that only we can see…our little secret. So, so perfect. Thank you.
Our Aspergers daughter will be 25 in August! What you describe as challenges and blessings now will change over time. The challenges will be different and the blessings will be greater as God shows the world and us, as parents, the gifts these kiddos have as He unwraps them before our eyes. I have learned to allow myself to grieve for the human focused milestones she has missed or was delayed, but I also rejoice when I see the hand of God so clearly in her life that it leaves me breathless and in awe of His grace.
I really identify with this post. I have a 17-yr-old daughter with Asperger’s and a 13-yr-old son who is on the autism spectrum and is developmentally delayed, as well as having a seizure disorder. What seemed frightening just a few short years ago is now our normal: challenging and often difficult, yet with many accompanying joys. The fear is understandable, but hopefully those starting out on this path can see that there are others on farther ahead, and that they’re living a life that — while different — is good.
I have four children. Three are boys who have or had medical problems: my oldest and youngest both were diagnosed with hydrocephalus. My 11-year-old has an intellectual disability (he’s more like a preschooler). He’s battling an unknown neurodegenerative disorder and eats through a feeding tube. His muscles are increasingly weakening and he’s facing major surgery in April. All to to say that I am used to the difficulties, trials, and afflictions our family has been through. I believe in the sovereignty of God, that all things work together for the good of those who love Him. I have experienced blessing in the tempest. I don’t know what the future holds but I do know Who holds it. My normal may be someone’s worst case scenerio, but I firmly believe there is blessing in brokenness.
Well put. I am praying for you Cheryl and your family right now.
Thank you for putting into words what so many of us experience. Our 11-yr-old has a different diagnosis of Down syndrome but so many feelings are similar, especially feeling that it can take years to go inches instead of miles. We do celebrate each victory such as getting a sticker for good behavior at school or learning to swing by herself 2 months ago. Her life and pace are very different from the norm, but no less valuable to us or to Jesus.
Wonderful post! I related inmediately just by reading title, we have been in our normal for 16 years.
Sandra, I love every word of this post. I remember those early days after James’ diagnosis (and even before when you were researching). I cried with you and for you. And though I don’t have a special-needs child, your words today are still a reminder to me that life doesn’t always turn out the way we expect or dream. I think all of us would do well to remember the truths you have pointed out.
LOVE
LOVE
LOVE this ❤️
Sandra, You are amazing!
I hope you know how much you help others with your posts and your heart,
God Bless <