Do you ever wonder if you’re selling your kid short?
Even though my son isn’t exactly a “kid” anymore—he’s 29-years-old—I sometimes tend to shortchange him when it comes to my expectations of his capabilities. It’s hard to tell with autism exactly what your child knows or doesn’t know. Especially when he or she doesn’t have a lot of language. Even though Joel has moderate cognitive disabilities, he occasionally says something that makes me realize there’s much more going on in that brain of his than I give him credit for! The most challenging communication barrier for him is an inability to express his feelings. Sad? Mad? Tired? Physically hurting? Overjoyed? We can only discern through facial expressions and behavior. I’m sure many of you live with that same frustrating challenge.
For the past four months, Joel has been very lethargic. This is a kid who has always been hard to keep up with! Getting him out of bed to go to his day program has been a struggle. On weekends with us? We can’t get him out of bed! When he does get to dayhab he refuses to get off the couch. He refuses to do those things he usually loves to do—his recycling job, walking group, cooking class, church. He’s lost several pounds.
Sounds like classic depression, right? Changes in sleep patterns, disinterest in favorite activities, weight loss…
A definite possibility, depression was the first thing we discussed with his physician and psychiatrist. But everyone who loves Joel and spends time with him on a daily basis says that Joel hasn’t had the affect of depression. He doesn’t look sad. And when facial expressions are the way we usually discern his feelings—Confusion! Frustration! Worry!
To rule out the possibility of medical issues, the doctor ordered all sorts of blood work. Everything returned normal. When the lethargy did not improve, he ordered more blood work. Slightly elevated levels of ammonia sent up a red flag. “Get him into a neurologist immediately,” the doctor said. It seems that neurologists aren’t too worried about getting someone in soon.
And so we went to the ER. On Halloween. Crazy, huh? If you’d read up on what elevated ammonia levels can do to the brain, you would have gone to the ER on Halloween, too, believe me!
For three days, our son underwent numerous blood draws, an IV with fluid, a CT scan of the head, an MRI of the brain, and countless blood pressure readings.
My son, who is not crazy about being poked and prodded at the best of times, allowed every single procedure without a fight. He let the nurse insert the IV, and did not once try to yank it out. Incredible! He underwent the CT scan without sedation. A first! The MRI, which was supposed to be done under full anesthesia, was tolerated with simple twilight anesthesia—no breathing tube and a much quicker recovery. Woo hoo!
I was gobsmacked (don’t you just love that word?!) by my son’s cooperation; his peacefulness; his beautiful smile in the midst of some pretty heavy handling. The nurses were pretty impressed, too!
I am one of those who tends to expect the worst. I think they call it catastrophizing. And believe me, we’ve had plenty of catastrophes with Joel in health care settings! That wouldn’t have been an unreasonable assumption under the circumstances.
But I realized in the midst of a very trying time that I’ve been selling Joel short. I don’t think I fully believe that he has matured from a hormone-riddled, antsy and too-often-aggressive youngster with autism into a young man who understands that when you don’t feel good, doctors want to help you get well.
The ammonia levels went down. Nothing showed up on any of the scans. Blood count, thyroid, liver, kidneys all tested normal. Praise the Lord!
We came full circle back to a diagnosis of depression.
Not so very long ago this new diagnosis would find me wailing and pulling out my hair: Depression! Another med! Pandora’s box! Oh no! Well, I wouldn’t be quite that dramatic, but you get the idea.
This morning I read Philippians 1:6-7a. I inserted Joel’s name into the Scripture. And I decided to hold on in fierce trust that God is at work, maturing my son:
And I am sure of this, that he who began a good work in Joel will bring it to completion at the day of Jesus Christ. It is right for me to feel this way about Joel, because I hold Joel in my heart, for Joel is a partaker with me of grace… Philippians 1:6-7a
God’s not done with Joel yet.
And He’s not done with this anxious mom, either!
Dad clowning around on Day 3 of Joel’s hospitalization. So blessed to see that smile!
In what situation of your child’s life do you need to truly believe in God’s promises – to hold on in fierce trust?