Family,  Health, Wellness, & Self Care,  Little Brother,  Special Needs Parenting

Little Brother, ADHD, and having two special needs kids

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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.

Little Brother is SUCH a joy. And, while he is an infant who nurses a lot and cries and fusses and is still working on teeth, he is a very EASY infant. He falls asleep with little to no soothing. I can literally lay him in his crib and walk out of the room and he will put himself to sleep. He lays contentedly on our big living room rug and just rolls around for hours. He works, HARD, at learning to crawl and doesn’t give up or fuss when doing it.

Y’all? I just can’t even with this baby…

Little Brother’s ease, while an obvious relief and wonderment for me, has poignantly highlighted just how far back Ezra’s deficits went.

I used to think that Ezra was an easy baby because everyone commented on how happy he was. But now I know. HE WAS NOT A TYPICAL BABY. He would NOT soothe. He would NOT sleep. He was miserable if he did not have 100% off someone’s attention. He could NOT regulate his emotions.

I watch Little Brother in amazement as I lay him down on the ground. Immediately, he rolls over and works, works, works tirelessly at conquering crawling. I recently watched a video of Ezra at a month older – he tried to just hold his head up but immediately started fussing, laid his head down, and just gave up because it was so hard and he couldn’t cope.

I literally have tears in my eyes as I type this because it hurts my heart. I am SO ANGRY that life has always had to be so hard for him.

I. am. grieving.

~ Pursuing self care and asking for help (in which we make some changes)

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.

two special needs kids with ADHD

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.

_____

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

September 10, 2018

He’s three now. Three is the year I barely survived with Ezra. Three is when it all fell apart.

So when his Sunday school teachers call me down to the nursery or his preschool teacher tells me he had to go to the office because he wouldn’t sit in time out, I panic.

I am terrified. No one understands the depth of my fragility in regard to this little guy.

I want to assure myself that he’s NOT Ezra and he IS neurotypical and that every time he screams or stomps his feet or throws a fit he’s just being a normal little boy.

But I don’t feel like I can trust myself because I thought all of those things about Ezra and I was wrong.

I can’t go through this again.

So this morning I had a mommy meltdown in the preschool office because I don’t know how to get over this terror. I don’t know how to not hold my breath until he’s not three any more.
Ms. Millicent and Ms. Karen met me with grace and understanding and hugs and let me blubber.

Ms. Karen just sent me this picture and he’s doing great.

Now if only I could convince myself it’s actually going to stay this way…

two special needs kids with ADHD

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

November 12, 2018:

God has opened an amazing door / opportunity for us, which I shall share below:

A new organization was created in our area (by a Christian woman who lives in our neighborhood) that has recently opened both a therapeutic, sensory-friendly preschool for 3 and 4 year olds and a social-skills based after-school program for grade school special needs kids or kids with behavioral needs.

We are moving LB from his current preschool, and Ezra is going to be going 3 days a week to their after school program. Both programs are based at a local church and very close to home.

LB will be one of 4 children in his class, with a max of 5 slots available for this program. He will have two workers, one of whom has experience with ABA therapy. Ezra will be one of 6 in an after school program where they will help him with his social skills, homework, and establishing friendships with the other kids in the program.

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.

Little Brother, ADHD, and having two special needs kids
They did a lot of work on self-awareness and emotional regulation
sensory play preschool
and a lot of sensory play!

_____

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:

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

preschool toddler play

preschool toddler play

preschool toddler play

preschool toddler play

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?

Doodles & Prewriting for Littles

_____

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:

ADHD homeschooling

ADHD homeschooling

ADHD homeschooling

Other days, school looked more like this:

ADHD homeschooling

ADHD homeschooling

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.

ADHD homeschooling

Little Brother, ADHD, and having two special needs kids

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.

May 1, 2023:

We’ve been having such a hard time with LB lately, and I’ve been leaning more toward the thought that he might be ADD (without the H).

You would think after 12 years of ADHD parenting, I would have all of this down, but these things present very differently from child to child. I’ve been hesitant to head down this road because I know a lot of behavior is learned from modeling…I wanted to make sure this wasn’t just attention seeking or mimicking brother. Anyway, I’ve experimented with some of Ezra’s meds and extra stimulants I’ve had on hand from prior med trials with Ezra.

Ritalin made him aggressive (both times I gave it to him he punched Ezra).

Caffeine helped but also increased hyperactivity.

Concerta worked like a charm, except he was up til 11pm all three times I gave it to him.

This morning I gave him Focalin (which Ezra takes in the morning) and wow!!!

He’s done with all his school, an extra math lesson, and has cleaned his room without any instruction, micromanaging, reminders, or me checking on him. Happy, cheerful, calm. No standing on his head or draping over furniture. Not a sour word or look in sight. Eager to learn, help, and participate. It’s like a different kid. 😳

Now to see how he behaves the rest of the day, if there’s a crash, and how late stays up tonight! 🤪

I really don’t want to medicate another child (and neither does Russ), but it definitely seems that there is a biological component because the difference is so stark.

Little Brother, ADHD, and having two special needs kids

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.

May 18, 2023:

We were able to get LB into see his primary care doctor yesterday to talk ADD meds. I knew from my few experiments with Ezra’s XR Focalin that meds would help LB too, but it was keeping him awake super late.

His PCM is new to our family (we saw a nurse practitioner for about 7 years, but she moved out of state in 2021), so I was very nervous about how his appointment would go, but the doctor placed complete trust in me + family history. He prescribed short-release focalin AND gave us 2x a day at 5mg to give us plenty of medication to experiment with the dosage.

Gave LB 5mg focalin at 8am.

By 9:15 his room was completely clean with no instruction of me telling him what to do, and NO distractions. He just calmly and happily went from one task to another. It’s like a different kid.

It’s also taken him 15 minutes to finish a math worksheet that he spent well over an hour doodling on and not completing yesterday afternoon.
🙌🏻🙌🏻🙌🏻🙌🏻

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.

Little Brother, ADHD, and having two special needs kids
Little Brother – unmedicated…
Little Brother, ADHD, and having two special needs kids
Little Brother – medicated!

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.

two special needs kids with ADHD
The boys – April 30, 2024
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