Ezra,  Special Needs Parenting

It’s just another (normal?) manic Thursday

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“If I didn’t know who that kid was, I would say he’s as high as a kite.” These are the words coming out of the mouth of my husband first thing this morning. Let’s just say that when I dreamed of having a husband and kids, conversations like this about our manic 10-year-old were not on my list of expected issues.

I’m pretty sure that all of these sleep issues he’s been having are manic episodes. My google search history from 2:50 AM reads like this:

adhd and dilated pupils

dysphoric mania

mania and dilated pupils in children

mania child

I’ll be completely honest when I say I don’t know where this blog post is going. I just need to vent with my fingers a bit.

Because who else has a color-coded spreadsheet of their manic child’s sleep habits? Anyone? Does anyone else have a medication spreadsheet like this? I’m sure I can’t be the only one.

Just another (normal) manic Thursday medication chart bipolar adhd

We went to the local science museum yesterday with some new friends. He was so “normal.” I mean, sure, the last time we were there (on his 9th birthday), I carried him out of the museum kicking and screaming (on his 9th birthday), while my brother, sister-in-law, and parents looked on. That was a rather traumatic start to his 9th year. This time, I gave him a 10 minute warning. He started to protest.

“Do you remember what happened last time we were here? Can we not do that again?”

He got agitated with me when we got separated. I had to duck into an alcove to find a vending machine because the water fountains were turned off (thank you stupid COVID), and he was “lost” wandering around the museum for a few minutes. I was pretty darn proud when the lady at the front desk asked, “Are you April? Your son was just here asking for you.” Okay, so he followed protocol. Good job, Bud.

He was MAD when he found me.

“I’ve been wandering around this museum for HOURS!!” 

It was about 3 minutes.

“Ezra, Ezra. Look at me. Ezra, look at me…I’m sorry. Now, lets take your medicine.”

“Okay! Okay! Okay!”

The rushed, manic agitation continues, but he takes his meds and we reunite with LB and the rest of our new friends.

Other than that little moment, he was normal. Completely normal.

Someone who doesn’t have special needs kids recently told my husband to not use the term normal and to use the word typical instead. It didn’t really occur to me until after the fact how presumptuous that was. I’m sorry. I know this person was well-intentioned and actually cares. But this person isn’t the one up at 2:30 AM managing a child who seems “high as a kite” and no…THAT IS NOT NORMAL. 

I spent about 30 minutes this morning in bed, drinking coffee, chatting over Facebook messenger with a friend. She has some bipolar kids. We talked about medications, manic episodes, cycling, metabolism, stimulants. The words of this life. She gets me. She gets my manic child. This is our normal. Discussing bipolar and mood stabilizers over morning coffee.

Today, I’ll be sending a MyChart update to the psychiatrist. I’ll be calling CVS to see how much a certain medication costs. On my spreadsheet of medications and their insurance costs that I made up when we switched insurances to help with medication costs, it’s listed as Tier 3. That means it’s a 60% co-insurance. I know this because I have the PDF of the BCBSNC prescription drug formulary saved on my computer.

This is my normal.

I checked my FitBit app at 2:50AM. Yes, I got him a FitBit just so on nights like these I can know exactly how much sleep he got. I was pretty stoked to see that, contrary to what he told me, he actually HAD slept for 3 hours and 50 minutes.

That made sense, because he was quiet when I went to bed. I didn’t actually check on him because I didn’t want to disrupt him if he was on the edge of sleep. So I just crawled into bed and tried to breathe as quietly as possible, praying he was actually asleep.

After my Google search rampage and stuffing my face full of 2 banana muffins and a half a cup of skim milk, I struggled to sleep. I lay awake asking God those hard questions again:

Why don’t you talk to us about mental illness in the Bible? Why isn’t there a guide for us? Why are you silent on this?

I hear the voice of our counselor in my mind. “Take it to Him.”

Just another (normal) manic Thursday

Recently, someone I knew had a teenager diagnosed with borderline personality disorder. She sent me the information because some of it sounded like Ezra. I read through posts about the “9 symptoms” of BPD. My husband has 8 of them. That’s interesting….

My thoughts continue to race. It’s my high-estrogen time of the month. I track that too, because I know better what to expect of myself. This is when I get crap done. I feel great. I love everyone. I talk my way through a 2 1/2 hour playdate with a complete stranger. I’m not manic, but it’s one week out of the month where I feel like Wonder Woman. It’s also one week of the month where I come close to being able to empathize with my child. The rest of my cycle, I’m just a zombie trying to keep up with The Flash.

So my estrogen-fueled brain is racing. I think about my husband. I think about my son. I think about my son’s wife…or if he will ever be stable enough to have one. He’s only ten, but I worry about these things. Because it’s my job – our job – to prepare him for life. And life, I hope, means a wife and kids. I know he wants a wife and kids, because he has imaginary ones. He’s never had imaginary friends, but he’s always had an imaginary wife. There’s a whole big drama about it – her name changes because she keeps dying and he keeps marrying a new one. One time he even married his wife’s daughter. That was…weird. I just let that one go.

I hope he remembers all the times his dad walks to the store for me to pick up groceries, or all the times when he fusses at him to go to sleep already so he can “spend time with Mommy.” I hope he remembers the good stuff more than the fighting.

“Good news Mom! I just checked my watch! It turns out I didn’t have an all-nighter because I actually slept 3 hours and 50 minutes!”

He interrupts me as I write. I got a text a few minutes ago that he has to jump on the computer at 9 for an appointment with his counselor. (Thank goodness for text reminders. Most of the time they are annoying, but today I would have totally forgotten.) I tell him so. He starts crying because his appointment is not in-person this time. His counselor is 30 minutes away. It’s a lovely drive and in a lovely town and we love going up there. But I’m only one person so I try not to over-commit. We’ve been seeing her twice a month, but his psychiatrist thinks we should increase that. So I scheduled video visits in-between the in-person visits, and he’s mad about it. Tough beans, kiddo.

_____

By two minutes after his appointment was supposed to start, he’s over being upset, I guess. He tells his counselor he’s good. He was upset, but not anymore. Even though I cleared my desk, he’s highly distracted with the things that remain. He struggles to stay on a conversation topic. The conversation is disjointed, and he needs redirected constantly. I settle on the couch with my coffee, more banana muffins, and a game of Spider Solitaire. He doesn’t seem to mind my presence. Occasionally, he even asks me questions.

Normally, when he’s in counseling, I’m not present. So this is a rare occasion to listen in. Which makes me feel like kind of a crappy mom. Like I’m invading his privacy. Even worse, I’m writing about this on my blog. At the same time, it’s super helpful.

Like, I know that when he gets multiple instructions in rapid succession (especially from different sources), it’s very overwhelming. I didn’t know that he calls this a “shark attack,” which is apparently an Army term? (Note to self: ask husband about that.) He also explains it to her in a way he’s never explained it to me.

“My brain is screaming at me to punch everyone. My brain is screaming at me to defend myself…to get out of here.”

He says he wants to change the topic. To what? “ADHD. My ADHD makes me feel different. I’m the only person in my family with ADHD. Sometimes, I feel like I’m the only one in the world. I know that’s not true. I really don’t like being different.”

I hate this.

He’s really been struggling with Little Brother these days. This might be a trigger for some of his recent sleep issues. I just don’t know. During MY last appointment with the counselor, we talked a lot about this. Why it’s happening…the changes in their relationship…and how to help Ezra navigate. That night, I started reading Beezus and Ramona aloud to the boys.

So, I felt quite proud when they were talking about Little Brother and he brought up the book. I hadn’t really discussed the book with the boys…I had just read it. He made the connection. Because he’s a freaking genius.

“I have a hypothesis. I think Ramona has ADHD.”

Sounds legit.

He goes on to say, “Both Ramona and {LB} drive their older sister and brother insane.”

Last week, the counselor told me the crux of the issue with Ezra and LB:

“It’s a battle of authority. The younger sibling no longer wants to submit. Ezra loves so much that he wants to control. {LB} is desiring for Ezra to love him for who he is.”

Ezra says it just as well:

“When I try to keep him safe…he never listens to me. Like, if I tell him to not run in the street, he won’t listen. He will listen to Mom and Dad, but not to me. He is determined to be defiant with me. He is determined to make me mad. He very rarely listens to me.”

Somehow she says something and his manic brain pops off…there’s a rapid shift in the conversation to people like Einstein and Leonardo DaVinci. His counselor says he has the same capabilities…like someday he might go on to make a great discovery.

E: “Like microscopic organelles? Or molecules?”

Her: “Or maybe a cure for a disease…”

E: “Like COVID…”

Her: “Maybe an invention that helps kids with ADHD feel more normal.” (I see her trying to redirect the conversation at hand.)

E: “Yeah, he says…like a normalizer. To help them feel not as non-normal.”

There’s that normal word again.

The rest of the session is spent discussing history, who killed Lincoln, JFK, and MLK Jr. I’m okay with that.

She gives him homework:

“Next time, tell me in what ways you and your brother are like Ramona and Beezus.”

I love this. My counselor and Sarah McKenzie from Read Aloud Revival are totally on the same wavelength here. I joke that this is homework for Mommy, because Mommy has to actually read the book. I think it will be time well spent, for both of my kids. And, for once, I feel like I’m on the right track.

Just another (normal) manic Thursday

I immediately cancel his next virtual appointment and reschedule it as an in-person visit. Because I think that’s better for him.

I’ll finish up this post and my second huge cup of coffee. I’ll try to get my manic kiddo to do a little bit of school work. Maybe he will, maybe we won’t. There will probably be meltdowns. Hopefully we’ll have some read-aloud time. Hopefully, I’ll have a chance to work at my “grown-up” job, fold the four loads of clean laundry calling my name, practice the piano for Sunday, listen to a sermon or podcast, and exercise.

It’s just another manic Thursday.

3 Comments

  • Amanda

    Hey there, Aprille (I hope I spelled that right)!

    I ran across your series about legalism a while back, but I don’t remember how I arrived there because I’ve had the tab open on my phone, meaning to return and finish the series for OVER A YEAR NOW. I finally have. Brava… you did an excellent job!

    I suppose that feels like a lifetime ago to you, but I just finished reading it, so it’s fresh for me.
    It feels like I may be beginning my own similar journey, but sadly, minus the clean testimony you ended your series with… though I had the chance, I didn’t choose obedience. It led nowhere pretty.

    No, my testimony is not clean, though I wish it was with all my heart… I was created to embody Christ to a certain branch of humanity, but I think maybe He created you specifically to embody Christ to your family. Perhaps especially to your brilliant but occasionally bewildering son…

    There once was another Godly woman who was blessed with a brilliant, yet occasionally bewildering son named Jesus; and while the role of Messiah is already taken, I do believe that your son is here for a great purpose… perhaps, as he wondered, some discovery or invention that will change the course of all humanity, and God placed him in YOUR care, because you were faithful and found favor with Him, just like Mary.

    You are not alone in your struggles.

    God sees you.

    He sees your faith. He sees your love for your husband and your children. He sees every sacrifice you ever made out of your love for Him and your love for others. He knows every word you’ve ever swallowed because you valued obeying His commandments more than satisfying the desires of your flesh, and He knows every tear you’ve cried in secret… He IS the God Who sees you, and He upholds you in the palm of His hand. You are the apple of His eye, and He wants you to know that, like the roses in the dumpster, the weirdo who says strange but encouraging things in your comments is just another way He says He loves you. You are not forgotten. You are His beloved.

    Cue: Rescue by: Lauren Daigle

    Full disclosure, I’m a little unsure I shouldn’t have erased most of that. If it blessed you, then to God be the Glory and I am thankful He used me to uplift you, but if it was just weird then… sorry!! I just feel the urge to give you an encouraging word, to pray for you and lift you up, and that’s what came out.

    Peace ???? & Blessings ????

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