Of Love and Loss: Parenting a Special Needs Child When the Unthinkable Happens

Psalms 69:16-17: “Answer me, O Lord, for your steadfast love is good; according to your abundant mercy, turn to me. Hide not your face from your servant, for I am in distress.” (ESV)

This isn’t my story. Not really. It’s Noah’s. But when I asked him if I could share it—something so personal and terrifying and fraught with the stigma that accompanies ignorance—he said, “Please do.”

My Noah has Asperger’s (ASD), OCD, ADHD, and DMDD. But he’s been re-diagnosed in the past four weeks. The DMDD (Dysregulated Mood Disorder) in his profile has been swapped for MDD (Major Depressive Disorder). Why?

Noah’s been re-diagnosed because he’s made two attempts to take his own life in the past five months.


Depression in Teens On the Autism Spectrum

Teens with ASD are more prone to depression(in addition to other mental health problems like obsessive-compulsive disorders and anxiety) than the typically-developing population. But for some, the struggle to communicate feelings of depression or hopelessness prevents a diagnosis until later—when the effects patently clear.

Noah already had a mental health diagnosis—one for which he was already medicated. We are parents who consider ourselves well-versed in the necessity of mental health awareness. We are advocates for early intervention and for stigma-busting. We’ve experienced depression and anxiety ourselves, and we discuss these diagnoses openly with our children and others. But somehow, we managed to miss the signs that his depression had gotten worse.

We did not know he had stopped taking the anti-depressant we dutifully laid out for him every night.

We did not know some kids at school had called him names (as teenage boys do), and specifically left him out of their parties; that joking had morphed to mean-spiritedness, and he had been annexed from boys he thought were friends.

We did not know that when left alone for 45 minutes on a Tuesday afternoon he would wrap an extension cord around an overhead pipe in the basement. That he would do it again a few months later—though he was back on his antidepressant—but this time, his plans were accompanied with a lengthy note that told us why.

These are things you find out when God loves you enough to prompt you to find a new therapist for your teenage son because his mood isn’t improving. And that therapist wants to see you as soon as possible. Even on a Sunday afternoon. And in that meeting, after giving her your concerns, she takes your son into her office by herself, only to emerge 15 minutes later and tell you, “I need to see you in my office with Noah, please.” And that is how you end up kneeling down in front of your son and cradling his tear-soaked face, telling him between your own tears that he is safe, and loved, and that he’s going to be okay, because you won’t rest until he is.

That is how much God loves you. God loves you so much that He points the way.

This isn’t a post about fear, though that is how it started. In writing this piece, I began thinking again of the fear that kept Matt and me up at night following that meeting with the therapist. It was fear that had me checking on Noah every hour, which is something I hadn’t done for him since he was a newborn, and I was petrified he’d succumb to SIDS. Then it was the fear of his falling, of broken arms, of dog bites, of every rational and irrational thing that a new mother hears in the quiet backroom of her mind, whispering that she might lose the thing she loves the most. Loving someone can be that way. If we let it, love can be tainted with the fear of love’s loss. When I realize how close we were to losing him, I must summon every nerve I have not to sob and vomit at the same time.

But we didn’t lose him. God loves us with such passionate intensity that He spared my son – and us, in the process. And then He gave us the tools to ensure Noah’s mental health going forward: all the things we didn’t know we needed at the time. These were things we weren’t prepared to need, but somehow, managed not to miss.

I noticed the doors that God opened to get us into a new therapist on a Sunday, a therapist who told us Noah needed an emergency psychiatric evaluation and possible hospitalization after he revealed to her things he had hidden from us.

I noticed that the dog barked every time Noah left his room at night, and in so doing created an alarm system so that I could finally sleep.

I noticed the insurance that paid for a hospitalization at a facility considered largely to be one of the best in the country, 20 minutes from our house.

And the team of specialists, and the supporting school staff, and the prayer warriors, and the beauty of the moments with my son when he was home from the hospital and I had a chance to run my fingers through his hair as he drifted off to sleep. These things, I didn’t miss. I noticed them all. I cherished them all, these gifts from a Good, Good Father.

Now we know the triggers to look for, and the things to avoid. I watch him take his medication and we explain its necessity when he needs the reminder. We limit his time on his phone and encourage him to be active outside on days he’d rather sit in his bedroom with the door closed. We watch for nicks and cuts and abrasions on his arms because his outside often holds the key to the health of his inner self.


God gave us wisdom because we asked Him for it (James 1:5). His steadfast love is good. It is a love that He lavishes on me and my hurting son.

If you have a loved one on the spectrum struggling with depression, learn how to develop a crisis plan here.

Read more about Noah and our ordinary, extraordinary life in my books on Amazon.com. And follow me on facebooktwitter, and instagram!