Any parent of a complex ADHDer knows that in a day’s time you’ll probably feel most of the feels. Overwhelming frustration is common, since – you know – ADHD. Joy and pride will pop up since you’ve made a habit look for the good stuff. There’ll be plenty of exhaustion from keeping things from going off the rails. Don’t forget the trepidation as meds wear off and witching hours brew. It’s an all hands on deck non-stop job that’s continually managed while we go about a regular day day. But what about the OTHER days. The ones with the BIG FEELS – like when we’re left wondering “are they going to make it” and “is it always going to be this hard”? There are tough seasons when things just aren’t going well and our kid isn’t thriving and we’re left wondering “how is all of this really going to turn out?”
Norrine and I have been stuck in this mode for the last handful of weeks or so as we’re each experiencing set backs with our kids. While our circumstances are different there are plenty of similarities. It’s hard. It’s troubling. And we both find that in the moment – when the avalanche of reality is hitting hard and every emotion is swirling – all of it gets absorbed. Our racing minds and wondering hearts are hidden in the light of day. They’re overshadowed by care giving and picking up the pieces. It takes so much sometimes to just take the next step that falling apart is just not an option. We can’t let ourselves feel everything we’re actually feeling or let our minds wonder everything we’re actually wondering because we know THAT IS QUICKSAND AND WE WILL BE EATEN ALIVE IF WE DON’T JUST MOVE FORWARD.
And so we walk the tightrope, balancing feeling all the feelings and boldly moving ahead. Don’t look down. Don’t look around. Just one step ahead after the other. It’s survival. The reality is whether it’s a regular day or our hardest season yet – we’re all on a tightrope. It’s a constant balancing act for us all – weighing the what if’s and the moving forward.
We want to remind you you’re not alone out there hovering hundreds of feet above the ground on your tightrope. We’re all out here together. It’s not easy but we can make it. Just one step at a time.
I hear a lot of people talking about ADHD being a gift. In my experience, I don’t see it that way. Maybe what they mean is something like one of the following. “It’s not the end of the world. It’s not the worst thing that could happen. You can cope with this. The challenges don’t mean there won’t be joy.” I agree with all those statements. It’s just that a gift is something you wanted, something that you prefer over other gifts. I’m not sure that’s the case for ADHD, especially complex ADHD. ADHD comes with a lot of challenges that it’s important for people to understand.
When I see my child struggle to self-regulate his hyperactivity and I see that hyperactivity interfering with his peer relationships, that’s not a gift. That’s a struggle. When I see my child shutting down at the very idea of math, that’s not a gift either. When I see my child getting average grades despite being gifted, that’s not a gift. The challenges my child faces because of their neurodevelopmental disorder do not enhance his life.
The lessons we all have learned as a result of coping with complex ADHD are a gift. We’ve learned a lot of science, tons about how to communicate with others, and, most of all, compassion. I appreciate those lessons but, for a “gift,” I’d rather have a house in the mountains.
I understand where people are coming from when they ADHD is a gift and I appreciate the can-do, positive spirit behind it. My children are a gift. They themselves have many talents and strengths. But is ADHD a gift to them or to me? I would say no.
“You should take a nap,” my husband says. Frankly, I don’t like when people talk about self-care, getting a break, and resting. I feel like it’s absurd. Ali has taught me to see how and where I am able to practice self-care and for that I’m grateful. Ali’s right when she says all these things about how important it is and yet, it often still feels ludicrous. I’m still growing in this area. In the meantime, I’m thankful that work is a way for me to practice self-care–work rejuvenates me and gives me a sense of control and accomplishment.
Beyond that, I question myself: How can I rest until my children are at peace? I struggle with this question despite knowing that “an empty pitcher can’t pour water.” I lay down to rest and begin to problem solve around school and his IEP. I schedule a phone chat with a friend in the evening and hear the meds wearing off and the screaming and crying begin and hang up. I linger in the shower and I start to hear the dog bark and the children scream for me and I turn the water off.
The thing is, none of this is actually very hard for me. Because it is my honor to care for this family and these children and my super complex child; I’ve been fortunate to have strength and stamina. When I want to rest, I am inspired by my son’s strength. When does he rest from ADHD, anxiety, depression, autism? People ask me, how do you do it? I ask, how does he do it? And the answer is, we do it together. Someday we might even get a hammock and take a nap together in the sunshine.
My child–my brave, kind, smart, loving, and complex child–has nothing to apologize for. Yet, over and over again, in the past year, he has begun to apologize to me for all the “trouble he is.” Every night and every morning, “Mom, I’m sorry for all the trouble I am.” During the night as he battles demons in his sleep, “I’m sorry, I’m SORRY.” My child has started apologizing for his very existence. It breaks my heart.
Over and over again, I say back, “You don’t have to apologize for being alive. You’re my son. It is my HONOR to care for you.” But it doesn’t help. I hear his apologies as I try to sleep and it makes me cry. Why should any twelve year old’s life be so complicated and his brain so atypical that he feels unworthy of being here and being cared for and loved? It breaks my heart.
I cry and I hug him and I eat cake late at night and I wonder what can I do, what can I say to take away this cycle of shame and blame he feels? Last night I connected the dots. I told him I grew up feeling just like that and I am still, at 52, working on not taking the blame for everything and shaming myself. He rested his eyes and fell asleep. My son, myself. I’m sorry this is one of your legacies from me. It breaks my heart.
Being the mom of a complex ADHDer (ok, well TWO complex ADHDers) is a little bit like being in those walk-through haunted houses, a so-called “Fun House.” You’re in the dark, sometimes there are people nearby but you’re mostly on your own, and you are either recovering from a jump scare or about to endure one. It’s unpredictable, full of tears and an occasional laugh, and you know there’s no way out but through it.
Some days and weeks and years are worse than others. Ali and I alternate between thankfulness and despair. Our journey was going really well for the past year or so until my son developed excruciating pain in his stomach. He’s brave and strong and an inspiration to me, so I know when he asks to go to the emergency room, it’s bad. That was another jump scare I didn’t see coming.
But it’s always like that. We can’t see what lies ahead of us on this journey. I find myself angry a good bit of the time, not with anyone or anything in particular, but because I am on guard. I’m angry because I’m afraid. I’m angry because I don’t have control. I’m angry because I believe that my son’s life has a purpose but I wish the purpose didn’t involve so much pain. I’m angry because I don’t want to be tiptoeing through the “Fun House” but rather serenely walking through the forest, with sunlight coming through the trees and a clear path and signs posted. There are no direction signs on my path, but still I move forward.
Managing the day to day of a complex ADHDer has challenges. Most of our time is spent corralling the rollercoaster of emotions they experience and pointing them in the the right direction as a gentle reminder to keep them on task . It requires a smooth and steady temperament on our part – keeping our reactions to a minimum and providing a continual flow of encouragement and support. Some days it’s nearly impossible to stay the course and not react to the attitudes or tasks left undone. Other days leave our hearts broken because we can’t fix their struggle and we all know a momma is only as happy as her saddest child.
Can we count the feelings we push away in a day’s time? There’s the continual flow of annoyances we can always expect – items left behind, things left undone and maybe school troubles. We’re exasperated a lot. But when things get hard, really hard, for our ADHD+ers it’s different. When meds aren’t working and side effect become debilitating. When they’re trying hard but fall short and know the teacher thinks they’re lazy. When their coach makes a comment in front of the whole team that leaves them feeling small. When they’re dragging their feet to yet another doctor appointment – do you wonder what they’re feeling? Sometimes do you look at your child and your heart can barely hold all the feelings back? All the ones you push away every day. Their hurt is yours.
Do you feel the load of your heart? Sometimes is it bursting at the seams? Is it overwhelming? We push through a lot in the day to day moments – tirelessly advocating on all fronts and pushing and searching for answers. Sometimes we don’t realize the dam is about to break because all we know is we have to keep it together.
Norrine and I have found it’s good to let it all go – and to do it often. We are not machines. Our hearts are tied to our people – we feel what they feel. And its a lot. A whole lot. If your child is in a continual struggle that’s complicated and hard and messy for your family – recognize that your heart is carrying that too. Feel the feelings. Come up for air. Acknowledge the hard road. Only then can you find perspective. For me, intense time in prayer brings me the strength and peace I crave. That time alone is necessary and healing. I can leave my burden behind and move forward.
How are you feeling? Is your heart in a heavy season? How do you tend to your hurts? We know it’s hard, but we know you can do it. We’re cheering you on.
One of the hardest parts of parenting a complex ADHDer is hitting unexpected roadblocks. Just when you finally get into a groove managing meds and moods and feel like maybe things are running smoothly – BAM! It feels like you just hit a road block while going 60 mph. Sometimes you can catch a glimmer of it coming at you, but other times it will catch you completely off guard.
While I know that roadblocks can pop up unexpectedly, I’m rarely prepared for them. It seems like our smooth patches lull me into thinking maybe we’ve turned a corner. So when we derail without much warning it really can take me some time to backtrack and make sense of what happened. Only then am I able to piece things together and attempt to pinpoint what sent us flying off course.
I’ve found keeping copious notes on med changes, doses and reactions to be a good resource to me. It helps me to look back and see patterns that otherwise I would never remember on my own. I also notice that when things are going smoothly I tend to pull back on asking how my ADHD+er is doing. I ask less questions and get less feedback, so I don’t see problems forming. Keeping close tabs on how things are going can be an invaluable tool to staying on course. Lastly, we all know that when the train goes off the tracks the best thing to do is stay calm – just like when a toddler throws a tantrum. Joining in the bedlam only fuels the fire.
These are probably not new revelations to you if you’re parenting a complex ADHDer. But in the heat of things you may, like me, throw all you know out the window. This just happened to me last week when my ADHD+er hit a MAJOR roadblock. To top it off I forgot every reminder you just read above – I literally threw all I knew out the window. Blame it on exhaustion or my own anxiety but it’s like I hit the gas instead of swerving to avoid a brick wall. What a wreck – all of us were left emotionally and physically drained. We still are! I’m still scratching my head wondering why I missed the signs.
So here we are, regrouping: Remembering that all the rules of parenting still apply when things are going smoothly. Reminding myself that although it feels like the road ahead is not going to be smooth ride it doesn’t mean we won’t make it to our destination. Relying on the things that always get me through – like my faith – to give me the strength and focus I desperately need.
Any roadblocks for you yet this school year? How are you handling them? What do you find works best for you? We’d love to know how you navigate these pitfalls. We’re cheering you on!
Ali wrote yesterday about progress. Progress is a funny thing. As humans, we instinctively reach out for upward movement, to climb higher, then we slip, we fall, we get up, and reach out again. And then sometimes there’s this boulder that comes crashing down out of nowhere and flattens us. That’s where I thought I was in August–under a boulder.
My complex ADHDer has never had stomach troubles. Until nine months ago when all of a sudden he did. And boy did he. Like everything else about my son, it came on with mystery and intensity and has been resistant to all attempts this far to diagnose and treat it.
As I’ve watched him cope with the pain and exhaustion, it strikes me just how far we have come. While I feel like a boulder fell out of the sky and knocked me down the hill, rolling back to the start line, that’s actually not the case. I can’t deny the coping mechanisms that he’s demonstrating, the kindness and compassion for the medical staff trying to help him, and his empathy for us as his parents during this painful experience.
And when I see all that, I see progress of a different kind. I see a boy/young man who understands and verbalizes his feelings, instead of melting down from sensory overload. I see a boy/young man with the patience to wait in hospital rooms and doctors’ offices and not cry or scream. I see a boy/young man who knows how to get through life’s challenges.
I see a boy/young man whose exceptional heart always shines through his complex neurology, just as it always has. We never needed to track progress on that.
It’s only now, in the twelfth grade, that I can say meds are truly making a difference for my ADHD+er. For many, the very first try gives some wonderful relief and ability. For others, it takes some time. For us, it’s taken a lot more. We’re finally at a place where symptoms are managed so it’s easy to want instant progress for all the things at once. But I know better. So instead, I think about what progress would really look like – especially this late in the game.
It’s easy to want to make up for lost time in record time. To want to just erase my ADHD+er’s negative coping behaviors and low self esteem that have developed over the years. To want not just a new start – but a clean slate. Instead, a strong but quiet voice is reminding me to focus on what’s important. To zone in on the thing that really matters.
And what really does matter at this point? Its senior year, where achievements are being tallied and most kids are enjoying the fruits of their labor as they open acceptance letters. It feels like we’re excitedly showing up to a party that’s already over. Like maybe we’re in the right place at the wrong time. It’s easy to stay stuck here.
Instead, I remind myself that every person’s journey is different. That high school is not the pinnacle of life for everyone. I remember that nothing we go through is ever wasted. Every single thing has purpose in making us who we were created to be. So, instead of wanting to hit the ground running with my laminated catch up list now that my ADHD+er’s symptoms are mostly managed FOR THE VERY FIRST TIME – I’m actually not focusing on catching up.
I’m focusing on things looking up. For things to FEEL better. For a day at school to be enjoyable and not a total struggle. If my ADHD+er can go through the remainder of his school days and FEEL good about them – confidence will build. That newfound confidence can negate a lot of that old track record. With that freed up space in his mind and heart he can begin to set his sights on his future and I truly believe the sky is the limit for him. He’s persevered through so much more than most his age could imagine. He’s never stopped showing up. He has more grit than anyone I know. That doesn’t show up on a transcript but that sure does indicate ability to make it in this world.
There is no easy fix for nearly a decade of being unsuccessful at school. How do you erase being really smart but falling short every day for so long? New starts can breath life into what’s dead. It begins with believing. With getting a laser sharp focus on that one thing that looks like progress. Because that one thing is the gateway to achieving it all.
The start of a new school year brings a certain showdown for parents of complex ADHD+ers. Years of wrangling issues before they have a chance to get too far off and roping off boundaries so your student is understood makes you all the more prepared for the next roundup. And it’ll be coming. Before you know it, the years of practice make you a bonafide professional and you may just ride off victorious into the sunset. At least that’s what we all hope for.
Ali’s Story: I’ve been here before. The eve of teacher meetings before start of school. It’s a moment of great possibility where hopes are still achievable. After twelve years of lassoing the same targets at these meetings, I also know some less desirable outcomes are likely. I’ve learned to expect both and know we will all survive.
Despite my experience, I still get nervous. I carefully craft my message. Practice my delivery. Pray hard over my words and more so my heart. Of course I called Norrine for a pep talk. Touched base with our tutor to get her thoughts. Everything points to the very same target – share my ADHDer’s heart so they can see the kid behind the false bravado. Paint a picture of who he is and how he thinks. More than anything, remind his teachers we are on the very same team. I have to remind myself too – because after all these years I know one thing. If we are going to have a good school year it’s because we all worked together to make it happen.
Nor’s Story: It’s not our first rodeo but this year doesn’t feel like the World Rodeo Championships! Generally, I start each school year with a burst of both positive energy and nightmare-inducing anxiety levels. This year feels different, more like a small local rodeo I’ve been to before, and I’m not sure why.
Oddly, the pandemic has granted me an overall serenity that helps. Or maybe it’s that both kids are returning to the same school they were at the previous year for the first time since we started Kindergarten? Or maybe because it’s not a transition year? In any case, my usual on-edge nerves and high blood pressure are thankful, as is my heart and soul. This might be what it feels like to have non-complex kids starting school.
How do you prepare for the start of school? Are you feeling anxious or confident this year? Maybe you’re a little of both as you navigate this unusual 2020 start to school. We are resigned to be optimistic, so we’re waving our pom poms and cheering you on!