Never enough: an honest look at what special needs parenting is like

Last summer, he buried his compass at the park. I’m not really sure why. He just wanted to. He begged us to go back to find it. Every time we go back, he looks. We bought him a replacement compass.

Today he broke down crying in the back seat of the van because he wants his compass back. The replacement isn’t good enough. He must have the one he buried…last year.

Last Friday, he came home from school angry and upset. “Today they KILLED the principal. They beat him up and buried him!” When I told him that, no, I just saw the principal, and he was very much alive in front of the school, he was even more upset that the school had tricked him. I immediately called the school to figure out what happened. Apparently a class had won a contest so they got to turn the principal into an ice cream sundae. They put the video of it on Twitter, and I watched it. The kids put whipped cream on his head, sprinkles, and that kind of thing. There was no beating. There was no death. There was no being buried.

I’m still lost as to what was going on in that little brain of his.

Sometimes I look at him, and I am stunned by his beauty – his beautiful brown eyes and his eyelashes-to-die-for.

I catch his profile, and I still see a toddler – I see facial expressions that he made as a toddler, or a preschooler. He’s still the same little boy. But his baby cheeks are gone. Completely gone. I kiss him where they used to be and make extra care to kiss Little Brother’s cheeks before I blink and they disappear on me too.

How can 6 1/2 years be so completely exhausting and yet fly by so quickly?

Will he always be so angry – in spite of being loved, valued, and cared for and every provision being made for his mental and emotional success?

Will I always struggle to connect with him? To love him as he needs to be love – the kind of love that is like pouring water into a barrel that has a hole in the bottom? The kind of love that feels like it’s never enough?

Every night he wants more. More attention. More time. More cuddles. (More food, more water…always something more.)

And yet, when it’s 3PM and I look him in his eyes and say, “Ezra, do you hear the words that I am saying right now? I WANT to spend time with you. I WANT to cuddle with you. Please go change your clothes…” and the next thing I know it’s 4pm and he’s still running around the house in pee-soaked pants, unfocused.

I don’t really have words to describe how these hard weeks feel. How long they seem to last. I’ve been through it countless times before. I pride myself on not being knocked on my butt this time. Not feeling hopeless. Not second guessing every decision. But still…so hard.

When it’s 9:35 on a Sunday morning, and I’ve actually taken the time to curl my hair, do my makeup, and even don jewelry – and the next thing I know he’s melting down because he didn’t want to change his pants that had a hole in them. At 10 he’s still screaming, and I’m back in pajamas – wondering why I even tried.

This is so much more than hyperactivity.

There’s a morning he wakes up. He climbs into bed to cuddle with me, and I wonder if it’s my imagination or if every cell in his body is literally vibrating at breakneck speed. He. cannot. calm. It’s that speed in his brain that causes the problems.

Tonight my husband and I looked at each other across the room – sharing those hopeless words. “I don’t know what to do with him.”

“We just have to keep working the plan…” I tell him. The structure, the routine, the clip chart, the incentives, the consistency, the counseling, the rules.

“He knows what he needs to do. I don’t really think that punishing him after the fact is all that effective. The problem is that he can’t access what he knows in the moment.”

Another ignorant Facebook friend shares an article about how ADHD is “largely a fraud” and my blood boils. I hate this. I hate that people still think that giving kids a more structured environment and more discipline will shape them up. That they want to “caution” parents not to medicate because they are “just not willing to maintain structure in their home” resulting in “a whole generation of children on medicines that alter reality when they don’t need them.”

I beg them to come to my house. Come. To. My. House. 

Watch him have a fit when his melatonin and probiotic are laid out in the wrong order.

What him get upset when he doesn’t have his “castle-ey” spoon to eat his Cheerios with. The same honey-nut-Cheerios-with-milk that he eats every. single. morning.

Watch me and my husband tell him multiple times after every single dinner… “Go take off your clothes for shower time. Go take off your clothes for shower time. Go take off your clothes for shower time.” 

It’s maddening because we do the same thing every single night with no deviation. He can recite his daily routine in order. But in the moment, it’s impossible for him to hone in on the simplest task.

I put him on Facetime with my mom and he’s more excited about flipping the camera from selfie to front mode, covering up the camera lens, and making silly face than he is talking to her. Forever distracted.

This is why we are so exhausted. This is why it’s so hard to connect with him. Just getting him to settle enough to even hear us when we are trying to communicate… “I’m right here. I want to connect. I want to love you.” It’s like banging our heads against a brick wall. And yet, when we reach our limit – when we are just DONE for the day… That’s when he panics. As though he hasn’t had enough of us.

There’s the exhaustion that comes from constantly wearing the “emotional regulation coach” hat.

Today he cried because I wouldn’t put on his seatbelt.

“Ezra, you’re 6 1/2 years old. I’m not putting on your seatbelt.”

“But I’m not…I’m onwee fouwr…” he says in a baby voice. We talk about his “red” day, and the baby voice continues. “No. I didn’t have a wed day. My book is wying.” 

I refuse to engage until he speaks in a normal voice.

I would tell you how many times this happens every week, but I lost count long ago.

Did you know that sometimes, when he gets upset, he cries and says he wants to go back to live in the apartment we moved out of in 2014? Or the house that we moved out of in 2013 – when he was 2 1/2? Yup. It happens a couple of times a month.

Adjustment disorder only lasts six months. That’s that the internet tells me.

And yet this anxiety and lack of emotional regulation skills seems like it will last forever.

I know, kind of, why this is happening. We are getting ready to move. Daddy is leaving for a while. These are big changes and changes mean stress. He doesn’t really know how to deal. I get that.

I still grieve. I think I feel a twinge of grief in my heart every time I look at him. Sometimes I wonder where my “normal” baby went.

Then I go on Facebook freaking out about something Little Brother is doing. The responses I get are, “All kids do that – it’s completely normal!”

And my heart breaks at the words because Ezra never did that. And I didn’t know. I didn’t know that it was like to have a “normal” kid until I had one five years later.

I watch Little Brother in awe and grieve because he is easy and simple. I kiss his baby cheeks and breathe in his normal-ness.

I watch Ezra in awe and grieve because he’s never been easy or simple. I kiss his baby-cheeks-no-longer and breathe in his tortured brilliance.

Nine and 3/4 days out of ten I go to bed feeling like a crappy mother. I hate that I had to end the night putting my foot down for the fifteen millionth time and not giving into his demands to drag the evening routine out for hours. I hate that I did more “managing” than “mothering.” I hate that, no matter how much I give, it feels like it’s never enough. I hate that my husband and I so often truly don’t know what to do and how to parent him.

I hate feeling so helpless.

I hate not having more of myself to give him. I hate being this depleted.

But that’s what special needs parenting is: giving your “never enough” until it becomes “enough.”