Questions I’m asking about my son’s special needs

When you ask hard questions, things get really messy. So, you’ve been warned.

“He’s just so mean,” she said to me last night. “I don’t know how you and Russ take it.”

In the moments, all I could say is, “Yeah, I know.” It isn’t until later that the words cut deep.

We are two months into Intensive In Home services for our 5 year old son who has behavioral diagnoses. I tell my best friends just yesterday, “We’ve seen some improvements, but not really as much as I’d hoped. And it’s not because they aren’t doing a good job. It’s just a hard situation. He’s always struggled and probably always will.” 

When we meet with them and go over how things are going, everything they tell us is pretty much old news at this point. We are utilizing behavioral therapy techniques both in home and about, just as we are supposed to. And some days, we really see improvements. Other days, not so much.

His lead therapist tells me probably once a week, “These behaviors weren’t learned overnight, so they aren’t going to be fixed overnight.”

Little Brother is so different. It’s probably a bad thing that I compare my children so much, but I can’t seem to help it. It’s not so much that he’s met his milestones earlier (although he has), but I see and sense something different in him. It’s a personal determination to do hard things, independence, and self-regulation. His strengths in these areas serve to highlight his brother’s deficits and I hate it for both of them.

For months I have grieved these differences and struggled to love them, just as they are, as separate individuals whose strengths and weaknesses have no bearing on those of their sibling’s. I think that, now, I’m out of that grieving stage and into stages of both partial acceptance and some really hard questioning.

When I can put Little Brother in his crib with the pacifier, walk out of the room, and know he’ll probably put himself to sleep – maybe not every time, but a lot of times – and yet I still have to threaten consequences just to be able to leave Ezra’s room at night, I just breathe a heavy sigh and know it is what it is. One of my kids has the ability to self-soothe and the other one doesn’t.

Is this acceptance or simply resignation? 

I look at how far we’ve come. Some days it seems like there’s been so much improvement, and other days it feels like we are exactly where we started a few years ago. Still having the same fights, the same power struggles, the same…everything.

I’ve spent countless hours wondering how to fix it. Researched counselors, therapies, medications, techniques, schedules, and so much more. We have found that implementing these things is the ONLY way he’s learned to cope. But the slightest misstep, the times he is a half hour late for his medication, or the tiniest unexpected variation in his routine and he’s melting down.

The good days are the days when he has more good moments than bad ones, where he sleeps til seven instead of waking early or rousing in the middle of the night, where we can put him to bed and he doesn’t call us back ten times, where he eats his dinner without a fight. But it’s rare that all of those good moments happen on the same day.

I lurk in some Facebook groups where moms of children with autism speak out against those who search for a “cure.” They say we don’t need a cure, we need acceptance.

I wonder…is it wrong wish my son didn’t have ADHD and sensory issues? To wish that there was some cure that would help him self-regulate without jumping through what feels like five million therapeutic hoops every single day?

Then there’s a whole other group of moms who claim to have found that elusive cure for their children’s behavior. From restrictive diets to essential oils, the claims come. You just need to try…

Then I start to wonder if I’m really doing enough.

Then there’s God. And that just takes this mess to a whole new level. He says we are “fearfully and wonderfully made.” My best friend’s blog is centered on this verse and how God has taught her that her autistic son is beautifully, fearfully, wonderfully “AUSOME” – that God didn’t make any mistakes.

I don’t believe that Ezra is a mistake. But when I hear the results of his Brigance testing, that he has 7-year-old intellectual capabilities but only 3-year-old emotional and social capabilities and he’s TRAPPED in the body of an awkard 5-year-old whose sensory system is constantly on overdrive, I struggle not to ask, “What in the world went wrong here? Why, God, why?” 

I tell people about his Brigance results this way: “As hard as it is to mother him, I cannot imagine how hard it must be to actually BE him. It’s no wonder he’s so angry all the time.”

I remember how scared I was that he would die when his heart rate tanked for nearly seven minutes when I was in labor. Fetal distress can cause brain damage, right? Did something happen in those moments when his brain was at risk of being deprived of oxygen that caused him to have self-regulation and sleep issues from birth? Or is this just the “fearful and wonderful” way that God made him?

Is it wrong to want to see him overcome these things? Does that mean I don’t accept him for how God made him? How do I NOT wish that things could be easier for him? How do I not grieve his deficits for him?

A few weeks ago in church our Pastor was speaking through the passage in John 9 where Jesus encounters a man who is blind from birth.

And His disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he was born blind?”

Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him.

I find myself looking for life parallels. A child with a disability since birth. Questions about why. The answer of Jesus that there really is no good answer, but rather this is a situation to glorify God.

But Jesus healed this blind man. Is there healing for mental health challenges? Should we be asking for it? 

Is there something God is trying to work in our lives, in Ezra’s life, that I just can’t see? Something that will work out far more beautifully than if Ezra were neurotypical?

Or are we seeing improvements so slowly because we are trying to hard to fix it in our own power? Have we been so focused on therapies and strategies and missed some elusive spiritual lesson that God is trying to teach us about faith, prayer, and dependence? If so, does that make it our fault?

Am I supposed to stop trying to help my son and instead stand and pray for a miracle?

Then there are the questions about the behaviors themselves:

When he yells and screams, hits and kicks, calls us stupid or foolish – is it a sin problem or a mental health challenge? What if all those naysayers are right and we simply aren’t being firm and consistent enough?

Yesterday my husband asked him if he realized what he had done and said in a certain situation.

“No,” he replies. “Because I don’t have magic powers. I can’t do slow motion instant replay so I can go back and see how I behaved.” 

I smile at his choice of words, but I hear what he is really saying:

“My impulse control is so strong. I simply don’t know in the moment what I’m doing.” 

A few months ago I asked him WHY (for the love of God WHY?) he refuses to use his learned “coping skills” when he gets upset instead of having a meltdown.

“It’s just too fast, Mom. My brain just explodes into hundreds of little pieces, and I don’t have time to think.” 

Again and again he apologizes. “I’m sorry I was mean. I’m sorry I hit you. I’m sorry for all the sin-ness I did.” 

He knows right from wrong, but his brain can’t seem to access that information in the moment because of his poor impulse control. Can he be held accountable for his behavior when his brain literally processes too quickly to stop himself from doing the wrong thing? What is in his control to change and what isn’t?

What does (and what should) accepting and loving your special needs child look like? If I am resigned to the fact that he always has and probably always will struggle with self-regulation and poor impulse control, am I selling him short? Am I turning his diagnosis into an excuse? Is this just hopelessness talking?

Where is the line between “Whatever my lot Thou has taught me to say ‘It is well with my soul'” and “Whatever, it’s never gonna change so we just gotta deal with it.”

But if I expect (and demand) that he change, if I tell him that his behavior is completely inexcusable – mental health challenges or not – am I being unfair to him and his capabilities?

Probably the biggest question of all…

How do I love and accept him as he is supposed to be loved and accepted?

And how do I love him as he is supposed to be loved when I am so exhausted of the fight? When I’m so depleted of the strength it takes to keep setting the hard boundaries (when he fights them every. single. time.), keep “being consistent” when the consistency seems to be for naught, and keep teaching right from wrong when he knows it but can’t seem to make it happen regardless?

I don’t have any good answers to these questions. I wish I did, but I don’t. So there isn’t really any way to conclude this post other than this:

I love my son. It’s imperfect. It’s messy. I probably fail at loving him well far more than I succeed, but I love him.

And I have to trust that God knows what He’s doing. One step at a time, one moment at a time, we will keep moving forward in a positive direction. And maybe, hopefully, someday–we will have some answers to these questions.