Most times, when faced with a writing project, I’ll fold up the laptop’s screen and breathe in, ready to unpeel a new word and lay it flat. Most times, I am excited, knowing that we’ll discover things together, you and me.
Other times, I will share with you something that slashes me sideways and leaves my mother’s heart bleeding. That is when the writing hurts. Today, every keystroke burns a little. Because today, I’d rather Noah have a disability you can see.
The more “invisible” the disability, the easier it is to dismiss.
A person might look simply angry, slow, irrational, or compulsive. Even dangerous, perhaps. “What’s wrong with him?” the casual observer thinks. “Where’s his self-control?”
A couple of days ago, I messed up.
I created a pressurized pre-holiday schedule. That was just the way things fell, I thought. Some of Noah’s appointments were a long time coming. We had to take what we could get. But I should have looked at the calendar and known immediately what those 48 hours would do.
We had spent half a day at Kennedy Krieger’s Center for Autism and Related Disorders. The next day, both boys were taken to see a new psychiatrist. That tidy little autism spectrum diagnosis is almost laughable in its simplicity, now. Now, between the two boys, three doctors have added or affirmed the following: ADHD, Obsessive Compulsive Disorder (OCD), Opposition Defiance Disorder (ODD), Generalized Anxiety Disorder (GAD), and Disruptive Mood Dysregulation Disorder (DMDD).
Noah—the one who has ADHD and OCD—has now had ODD dropped in favor of DMDD, which is a diagnosis intended to replace childhood bipolar disorder, but which is more severe than ODD. It is a “working diagnosis” for Noah, and one that his psychiatrist told us he “reserves the right to change to early-onset bipolar disorder,” particularly because it occurs with GAD.
You know. One of those invisible things that Noah has.
So on the second day, Noah began crying on the way to an end-of-season football party for his brother. In an instant, his rage caught fire. Shaking and grabbing at the seat belt, he said he didn’t want to live anymore, and he opened the door on the freeway.
He yelled that he was going to throw himself out. He said he wanted to die.
My 11 year old son told me he wanted to die.
“Please God,” I prayed that night, “whatever hurts me, I will take a double portion, so that Noah will hurt less.”
We’ve been told by his doctors that anxiety and depression are common with high functioning autistics. Associated psychiatric conditions grow like weeds in the fertile soil of their exceptional minds. But even if he weren’t autistic, Noah would still have to battle the genetic what-for, considering his mother struggles with anxiety and depression herself, and his father is bipolar.
Take a peek at our bathroom counter:
Where was I the other day? I was in 1 Peter 5:7, repeating to myself, “Cast all your anxiety upon him because he cares for you” (NIV). Ten translations of the Bible use the word “anxiety.” “Anxiety” is the word that while invisible to most people, happens to be an ever-present guest in our home.
Anxiety is not worry, mind you. Not the logical thing that follows a lay-off, or the losing of a house, or a medical diagnosis. It’s not the things that “neuro-typicals” experience. Anxiety is the illogical thing that works in concert with depression to convince you that throwing yourself out a moving car is a good idea.
Even as I remember grabbing hold of Noah’s shirt that night, pulling him back toward me, I am so aware of God’s voice speaking directly to me in that word, “anxiety.” It conjured my anxiety about Noah, and Noah’s anxiety about everything else.
But I’m reminded that God is a compassionate God, a loving God, a God whose wings cover this whole broken family and all its obnoxious acronyms and pills.
I have made an uneasy peace with His choice of un-seen things for this family: the Asperger’s and depression, the anxiety and bipolar disorder. His plans may not have been my choice. They may complicate things because they are hard to see. But I’ve come around.
I remember that He sees us, even when we think we’re invisible.
Sarah Parshall Perry
Latest posts by Sarah Parshall Perry (see all)
- The White Noise of Disability - February 5, 2018
- Love in the Age of Worry - November 1, 2017
- Evolution and Hard Decisions - December 7, 2016
Jolene @ Different Dream for My Child says
What a good reminder that there’s more going on with our kids than meets the eye. Thanks for adding it to DifferentDream.com’s Tuesday link up.
Sarah Parshall Perry says
Thank you for blessing me, Jolene!
Ron Sandison says
Sarah, thanks for sharing your family’s story. I am a young adult who also has Asperger’s and works fulltime in the mental health field at a hospital. Anxiety with sensory issues is common among us on the spectrum. One verses that always brings me peace is Psalm 94:18-19, “When I said, “My foot is slipping,” your unfailing love, LORD, supported me. When anxiety was great within me, your consolation brought me joy.”’ I have founded a ministry Spectrum which offers resources for families with autism. Please check out my website Spectrum Inclusion: http://www.spectruminclusion.com/
Thank you, Ron – God bless you, friend.
Denie Sidney says
May God bless you and your family as you journey through this process. Thank you for your transparency. You are not alone.
Thank you Denie!