Little Brother, ADHD, and having two special needs kids

This morning, on a rather controversial meme I posted on my Facebook page Special Needs Survival, I found myself starting a response with, “As a mom of two special needs kids…” That’s when I realized that this post is long overdue.

If were to ask me, “Aprille, when is the moment you realized that Little Brother wasn’t neurotypical?” I doubt I could nail it down for you. There were a lot of moments, scattered across the almost 9 years, when I would notice things, think to myself, “Huh…”, and then file under “That was weird.”

But there would be just as many moments filed under the “Reassurances of Normalcy” folder. The ability to self-soothe as a baby. The ability to just be EASY as a baby – so much that it made my heart grieve when I realized how hard it really had been when Ezra was a baby.

There was the night when he was a baby and he wouldn’t settle for sleep until I laid him down and LEFT HIM ALONE. It was my constantly soothing, rocking, and patting that was keeping him awake – unlike Ezra who couldn’t fall asleep without constant stimulation.

There was the COMPLETE ABSENCE of sensory issues and sleep issues – aside from some feeding aversions. There was the zero issues nursing and the ready acceptance of a bottle at nine months.

So I was pretty much at ease that this one was “normal.” I even wrote a blog post about it: Ode to the Neurotypical Sibling of the Special Needs Child

The first differences I noticed when he was a preschooler were a hint of anxiety and perfectionism. At age three, he developed a phobia called toysgoingdowndrainsaphobia. It didn’t matter how many physics lessons we gave him, he was still conviced that his bath toys would go down the drain and disappear forever. Then this phobia extended itself to our neighborhood pool. His first order of business upon arriving at the pool was to panickedly rescue every single toy floating in both the baby pool and the big pool and set them on the concrete slab beside the pool. It was pure terror that motivated him.

Now, I had some weird anxieties like this when I was a kid – like that phase where I would hide in my room because I was terrified of being eaten by the purple garbage truck. I wasn’t scared of the other colored ones. Just the purple ones.

It was a quirk – a phase – because KIDS ARE WEIRD.

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When LB was three, we tried traditional preschool. It did not go well. Nor did it last long.

By November, we moved him to a different preschool program that was more suited to his (and our) needs:

That program, while expensive, was truly a Godsend for us over the next year. Because of the experience of the workers and the fact they were working with both boys, they could handle anything that either of the boys threw at them. We saw improvement in both of them, and it wasn’t until we started homeschooling that we felt they would be better suited at home.

I knew based on LB’s unsucessful preschool career and his ability to function in a specialized preschool that he was…different. Diagnosable? Probably not. Maybe he was just sensitive to all the chaos in the home. Maybe he was just modeling the behavior he saw Ezra utilitize to get his way. Maybe he just didn’t have a good example of the right way to behave.

That’s what was so great about this program. It was designed both for special needs kids and for kids who function outside of “typical” but whose needs may not be severe enough to warrant a diagnosis. It was for those “in the cracks” kind of kids – and that was how I felt about Little Brother. He was just kind of in between.

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We started homeschooling when LB was almost 4. We kept the boys in their specialized programs through a summer camp they could both attend, but the call to homeschool so radically transformed our lives that we felt the kids really would do better at home full time. While Ezra’s education was my priority, LB wanted in on the action. So I did what any normal preschool mom would do – I bought a bunch of tracing and coloring workbooks from the Dollar Store. There was just a few problems: LB was very perfectionistic. If he went “outside the lines” when coloring or “off track” when tracing, he would have a complete meltdown. Completely emotionally distraught at his errors. So, smart mother that I am, I bought and printed off dot marker pages instead. But if those dang circles were not filled in ABSOLUTELY PERFECTLY (no moons inside, no ink outside the circle), it was another meltdown.

As tracing and coloring make up the bulk of almost any preschool curriculum or activities, I was at a loss. I couldn’t just tell him to “go play,” because he wanted to be with us. He wanted to be learning. I spent a lot of money that year on “one hit wonder” preschool activities that didn’t involve tracing or coloring. Most of these bought us maybe 30 minutes of time before LB lost interest:

• Shape Matching Egg Set
• Uppercase & Lowercase Alphabet Puzzles
• Easy Addition Puzzles
• Learning Resources All Ready for Toddler Time Activity Set
• Learning Resources All Ready for Preschool Readiness Kit
• Self-Correcting Wooden Number Puzzles
• Pegboard Sorter Set

So it was activities like this, books, and wayyyyy too much screen time that first year of homeschooling.

Then, out of the blue, after six months of this struggle, he picked up Doodles and Prewriting for Littles and did half of the book in one sitting. Today, his handwriting is far better than his brother’s. It was just a phase…or was it?

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In April 2022, we put LB in therapy with the same counselor Ezra was seeing. (She is a Licensed Clinical Mental Health Counselor and a Certified Clinical Anxiety Treatment Professional.) Initially, it was conflict between the boys that I was hoping to address with play therapy. It was very beneficial, and helped to establish a rapport between LB and our counselor that has remained to this day.

The next thing that stands out was LB’s constant complaint of boredom. This was when he was 6, almost 7. I knew that he had the ability to do things like clean his room, do his schoolwork, or even play. But it was like the boredom was so strong it almost hurt. He would stand on his head on the couch and just seem utterly miserable. It started getting harder and harder and harder to get him to do…really anything. That’s the first time I found myself Googling things like “ADHD boredom” and “ADHD dopamine.” I could see that it was a matter of a low level of stimulation. I kept hoping that it was a phase.

We stopped his Kindergarten math book and skipped ahead to 2nd grade, which he was able to manage just fine when the mood hit him right.

Other days, it was a lot harder. School looked a lot like this:

Other days, school looked more like this:

Every once in a while I would give him one of Ezra’s short-release stimulants, just to see what happened. The focus was there, but then he hauled off and slugged Ezra, something that isn’t like him, at all. Okay, so that won’t work. Wait another month. Repeat. After the 3rd or 4th hitting incident, I tried caffeine tablets. The results were mixed.

More desperate days. More frustration. More wanting to scream throughout the school day because he would. not. do. anything. He would draw. He would doodle. He would build towers out of pencils, turn his erasers into airplanes, or draw an entire dry erase city out of his place value houses. But he would NOT do his schoolwork.

As we moved into the next spring (LB being 7 1/2 years old) one desperate day I gave him one of Ezra’s long-release stimulations.

I talked with our counselor. At first I asked if she would be willing to do a more official diagnostic form that would “prove” to medical and psychiatric professionals that we needed to pursue medication. But she recommended first just talking honestly with our primary care doctor, because LB’s needs might be simple enough to treat with primary care. It ended up being great advice.

I would love to tell you that bam-bam-bam it was an open and shut case of stimulants for ADD and everything was better. It hasn’t been….that simple.

I know for sure that stimulant medication helps Little Brother. BUT, his body responds to stimulant medication COMPLETELY DIFFERENTLY than Ezra’s body does.

For starters, it is a MEGA appetite suppressant. This is bad enough in its own right, but what ends up happening is that the hunger returns with a vengeance about the same time the meds are leaving his system, causing the perfect storm of rebound hyperactivity, emotional dysregulation, and HANGER.

It also makes it harder for him to fall asleep (whereas it actually helps Ezra fall asleep), so we have to use melatonin to help with that. Even then, there’s still more late nights than normal.

Basically, it works FABULOUSLY during school hours when I’m trying to get him to do school and chores, and then he turns into a hot mess of emotions, hunger, and out-of-sorts-ness about the time Russ gets off of work.

So the last year (it’s hard to believe it’s been a year already) has been a lot of trial and error experimentation of multiple medications, mainly the two chemicals methylphenidate (Ritalin) and dexmethylpheniate (Focalin) in their MANY DIFFERENT short-release and extended-release formatations.

I know we are on the right path. His once-a-week co-op teachers have mentioned that they see a huge difference in his ability to focus, sit still, behave, etc. I don’t think we have found the perfect “sweet spot” solution just yet, and timing is one of our biggest problems. Also, these medications (generic stimulants) have fallen into a NATIONAL SHORTAGE, which makes it very difficult to get medication on a good day. I recently had to increase the dosage of Ezra’s morning medications just to get the medication he takes! Last week, I had to call three separate pharmacies and visit two just to get meds for both the boys.

Related: No, medicating my child’s ADHD is not the easy way out

Last week, after some bizarre anxiety situations led us to discontinue Concerta, I tried two days with no medication. It was AWFUL. Day 1 I ended up falling asleep on the couch in the afternoon because I just didn’t have any fight left in me. Day 2 found me crying on the phone to my mom. That night we went out to eat and Ezra’s psychiatrist walked into the restaurant. All I could do was laugh. “Okay God! I get it!” I requested a referral to him in hopes that he can help us troubleshoot the dosing and timing for LB’s medication.

That night, as we were driving to dinner, I mentioned to Russ that we needed to pick up his sleep meds. Ezra responded by saying, “It seems like everyone in our family is on medication!”

“You’re right,” was all I could muster. And, as I told my mom, I HATE IT. I hate medicating. I hate having to use the “trial and error” approach on my two special needs kids just to find something that works. I hate having to explain (again and again) that there is a marked difference on medication and off medication.

It’s not like I was coveting this diagnosis, giggling in satisfied glee when I saw ADHD marked in my second child’s medical chart with a “FINALLY! I KNEW HE WASN’T NEUROTYPICAL! I HAVE TWO SPECIAL NEEDS KIDS!!! YAY!!!” It’s not like that at all.

I don’t want this life for me. I don’t want this life for THEM. But I come from a family marked by neurological differences, and I married someone who did as well. I didn’t pick the most focused, stable, calm, and emotionally regulated person to join my life with. But God led me to this man. God gave us the two special needs kids that He did. God made their brains different. Or maybe it’s just the fallen order of a broken creation that causes these things – brains that work differently, emotions that can’t regulate – just like my near-sighted eyes and chronic fatigue.

I believe in the One Who makes all things new. Until He comes back and sets things right, I will praise Him for putting my life in the 21st century. I will thank Him for MyChart and methlyphenidate. For the Walgreens and CVS app. For doctors and counselors who listen to distraught mothers. For the material provision that allows us to sink money into better functioning each month. I will praise Him for my wonderful special needs kids.

Little Brother is intelligent, articulate, creative, and detail-oriented. He shares my penchant toward perfectionism. Most days, he’s not even all that hyper. But we have found that his brain needs a little extra help. Just like his brother’s.