ADHD

Done With Consistently Inconsistent: Why I’m treating my ADHD

Over the past six months, I have gone from wondering for years if I have ADD/ADHD to discussing it with my counselor to getting evaluated and diagnosed, and finally to getting treated.

As with everything in my life, the path has been consistently inconsistent. In fact, if there was a catchphrase for everything I have ever done, it would have to be “consistently inconsistent”.

I start things with enthusiasm, only to stall out between 50-90% complete.

I work hard, except when I sink into an abyss of Candy Crushing.

I’m smart and capable, except when I’m a total airhead.

I am compassionate, thoughtful and considerate, except when I blurt the rudest comment possible.

can focus, especially when something is fascinating. Except when I simply cannot.

For many years I would see the signs of ADHD in myself (yes, I have the “H”, even as a fortysomething woman), and add the disclaimer that everyone is like that sometimes. My mom, who is the most dutiful person I know, tends to run late and lose track of time. My sister, who is second only to my mom in that category, has days when she falls into that candy crushing abyss. I suspected that much of it was just the stigma that less-than-organized women suffer just because we don’t fit a stereotype. Yet, the inability to plan and complete projects, the very aspect that caused my failure from the gifted program in middle school kept echoing through my life.

For every diagnostic aspect that I have of ADHD (for the record, I meet diagnostic criteria and severity in all of the characteristics), I can think of someone who has the same thing, at least as bad or worse. What was missing in my equation was threefold.

First, I was thinking of one of the many aspects that I have, and not realizing that it’s the only aspect or one of only two that others have.

Second, those I didn’t recognize that those inconsistencies are the rule instead of the exception for me, and not for the other person in mind.

Most importantly, what has been apparent, especially in hindsight over the years is the fact that these inconsistencies have not only disrupted my life and my goals, they have disrupted my view of myself.

Listening to this webinar recently (not watched, mind you, in order to focus I listened while stacking wood), all of the remaining pieces fell into place perfectly and made sense. If you have ever had the aha! moment of all of recognizing something about yourself that changes your perspective about everything, past present and future, you will relate to this experience. Rather than hearing Dr. Hinshaw, the presenter, expound about girls and women with ADHD, he was telling me about myself.

I have, at several times in my life been diagnosed with depression. I already suspected, but when diagnosed with ADHD, I also met criteria for generalized anxiety, anticipatory anxiety, and social anxiety. Each of these commonly co-occurs with ADHD, especially in women.

***

Running and coffee have been forms of self-medication, unable to run, my struggles have multiplied, thus the diagnosis and treatment.

I took my first dose of Adderall this month.

I have developed many coping skills, and my wonderful husband creates organizational systems for me, makes lists, and reminds me endlessly of things I need to do, but I’m weary. The perpetual backward slide (which I refer to as entropy) has taken too much of a toll for too long. I don’t want to fight anymore, and I’m not even sure I can; I suspect that I don’t have it in me to keep pushing indefinitely at this pace for such paltry results.

Being realistic about the effect on my body, and the need to continue to develop the skills that I need to do life better, medication is a game-changer.

Already, I have gone from feeling like I’m running on ice to getting traction and hitting my stride. Without medicating the anxiety, I have less of that too. It seems that being consistently more consistent makes for a more predictable and less chaotic life, which (for me at least) reduces anxiety. For a few weeks now I have not fallen into bed and suddenly realized what I neglected, but rather, felt a sense of accomplishment and pride.

This is but the start of a new chapter, and with many more to come, I realize that surprises can and will arise, that my approach will likely change, and that this is not a solved problem, but rather a new direction with favorable change, for now at least.

I think I was due.

autism · Down syndrome · special needs parenting

How Summer Changes When You Have Kids With High Needs

Summer break isn’t my favorite.

I used to love it. We had a camper and several times each summer our family would visit different parks around the state, enjoying nature and time together. It was idyllic, and this, or something similar is what summer means to many families.

If I had to choose just one word for what has changed, that word would be vigilance.

Our son, Ben, has high needs. Yes, he has Down syndrome, but so does Alex, there’s a difference. Add in autism, with some hefty medical and psychiatric diagnoses, and time with him requires constant vigilance. Like bringing super busy and fearless two-year-old twins to the Grand Canyon overlook without a rail kind of vigilance. And that is just outside at our home, when we go anywhere else our efforts are multiplied.

This is why:

  1. Our child doesn’t have discernment. He occupies a twelve-year-old body, but his mind is much like that of a toddler. Dangers like busy roads, campfires and water mean nothing to him, and we have no way to explain it to him.
  2. He doesn’t learn from experience. Family members have been flummoxed to see him run into the water until it’s over his head, then stand there until someone rescues him. After coming out coughing and hacking, he will turn around and do it again. And again. And again. He will even laugh while doing it because he gets attention for it. He has yet to grow out of it, and I have my doubts that he will. Any time spent near anything dangerous is similar.
  3. He doesn’t respond to punishment of any sort. Neither in school nor at home. We have yet to find a way to create a consequence for his actions which discourages him from doing the same in the future, and that is with social workers and psychologists using their best tools. (No, this isn’t an invitation for you to share your idea with us).
  4. He melts down. Too much stimulation, too many “no’s” or transitions, or just any change of setting are triggers for meltdowns. Anyone with a toddler knows what it looks like, flopping on the floor, screaming, kicking, hitting, biting and more, with murderous rage. But this is a twelve-year-old. He weighs about 100 pounds now, and he isn’t getting any smaller.
  5. He has discovered that taking his clothes off gets a reaction, and he loves reactions. Any time spent in public is taking the risk of public nudity.
  6. It’s a break from the structure and routine that keeps him together. School is a setting with professionals who work with him on these and many other things. He craves the predictability, and reproducing it at home doesn’t and won’t work, and goes against the fluidity that makes summer fun for the other kids.

We aren’t alone either. You may not see them, chances are they are holed up at home being selective about going out, but there are many families like ours, struggling just to visit the lake for an hour, or stop at the ice cream store for a cone on a hot evening. We know we need to get our kids into the community, but we do it judiciously, because so often it ends in frustrated exhaustion and tears. We live this year-round, but during the school year, our children have the structure and stability of professionals during the day, and we meet them refreshed and ready in the evening. Those with school during the summer have less of it, and the free time feels chaotic to them, and their families both.

Why do I bother with telling you this?

Because not very many people will. We left church, one with a special needs ministry because our son’s behavior and medical needs were too much for the volunteers. We no longer attend the special needs family camp we tried, because his needs were too much for the volunteers. We are the outsiders, the resources there are don’t fit for us, and we struggle alone. And I think it needs to be said.

 

adoption · Down syndrome · special needs parenting

The Next Step in Pro-Life

This weekend marks the 45th anniversary of the landmark Roe v. Wade decision which legalized abortion nationally. I am not even going to attempt to discuss the law, rather, I’d like to examine the next step.

What happens after birth?

What happens when children are born with disabilities, and in an instant a parent becomes a caregiver?

What happens when a parent gets addicted to opioids or dies of an overdose?

What happens when parents hurt their children because of human frailty, or neglect, or substance abuse?

What happens when children have enormous medical challenges?

What about services and support for people living with mental illness?

And so much more.

Wouldn’t robust support of families caring for children with exceptional needs be pro-life? Would women be less likely to terminate a pregnancy with a child who has a prenatal diagnosis of disability if they knew that access to everything their child would need to thrive would be available and affordable?

Wouldn’t it be pro-life to fund research and resolution for opioid addition? And while we’re at it, there are record numbers of children in foster care at present, in large part related to opioid addition, being a foster parent is, in my humble opinion, the most stunningly beautiful example of pro-life imaginable.

Do you get what I’m saying here?

There are dozens of ways to embody a full-circle, lifelong pro-life stance without even bringing abortion into the conversation.

But it’s hard.

It’s easy to talk about changing a single law, and to carefully hand select politicians who have a certain box checked on their platform. But if that’s your stance, can you answer what should happen after the children are born?

Adoption.

But wait, is it right to separate a child from their ancestry for life? Biology is enormously important, and while infant adoption is sometimes necessary, far too often it’s a lifelong solution to a short term problem when better solutions for both the child and parents are available.

I don’t claim to have answers, in fact, it’s the questions that overwhelm me.

But as a person who has spent my adult life focused on the children who are already born, the ones with disabilities, the ones whose parents are addicted, the ones who have been orphaned, the ones with mental illness, the ones with so little support. I have come to believe that if everyone who made sure that they voted for the pro-life candidate took a step or two to care for the children once they’re born that it would transform everything. We have the ability and the obligation to fill in those vast gaps for the children who are already born.

special needs parenting

Joy is an Act of Resistance

Yesterday was a day that started out dicey and slid down the slippery slope to an urgent visit to a psychiatrist and social worker at the Community Mental Health office. Tears were shed, cuss words were uttered and there were some awful moments for every single family member.

In the morning we had discussed having a fire in the fire pit and eating dinner outside. Even after the kerfuffle that kept on escalating, we managed to have our fire.

It seems obvious that when your day completely derails to admit that it's simply derailed and hang it up.

But I don't believe it.

Our fire was a bold statement. A statement that screamed that the awful moments won't define us. That we refuse to surrender to the chaos. That we will continue to pursue joy no matter how elusive it is.

So we had our fire and we laughed and had s'mores and lived. At the end of a fractured, derailed day we came together and declared that we will continue to try. No matter what.

This isn't denial. We know how close we were to disaster, it's defiance. We will not let our derailed day define us.

It's resilience, the act of getting up again and again no matter how many times the rug is pulled from beneath us.

It's resistance, refusing to slide down the slippery slope into despair.

It's a way of communicating our determination to win the war even when we lose the battles.

It would have been easier for two exhausted parents to just throw the food on the kitchen table and claim every right to give up on the fun we had planned. It might have been the obvious choice, but we would have missed the fresh air, the communion and teamwork that happens when you enact a plan together.

We had our fire and it was good. We ended the day with a fresh cherry of joy and a dab of whipped cream on top of the sundae we had to pick up off the sidewalk.

advocacy · special needs parenting

Is Modern Medicine a Luxury?

Welp, here it goes. I can’t be silent. I reviewed the Senate Healthcare Bill, and it affects my son.  I don’t know if my blogging does a darn thing, but I believe I’m obligated to advocate for my child. As such, doing what I can to ensure that people are aware of the ramifications of this bill and asking those who care to make their voices heard, is the least I can do. 

For the sake of brevity, I will keep this to the two factors which have the greatest impact on my child.  The photos below were taken from an NPR summary of the bill. 


Many people think that Medicaid is a hand out to able bodied people who choose not to work.  However, around 90% of Medicaid dollars go to the elderly, disabled or working people whose income falls below the threshold in their state. Therefore, reduced funding to the program hits heaviest on the most vulnerable populations. As adults, both of my sons will rely on Medicaid for their medical coverage.  It’s not exactly clear what these cuts will mean to them, and perhaps that’s the most worrisome part of this. Alex might be just fine if he stays healthy, but Benjamin’s health needs are lifelong. If he cannot stay on our healthcare plan, and Medicaid is cut, what would the options be?  Nothing here is clear, and for families like ours it’s terrifying. 


This part is even more harrowing. In addition to his developmental and medical needs, Ben has serious mental health needs.   He sees a psychiatrist, uses psychiatric medicine, and needs autism therapy, which is a mental health benefit. Without these in place, his wellbeing is in jeopardy. I cannot overstate the seriousness of this situation. As it is, resources for people with developmental, medical and psychiatric needs are sparse, if funding is cut, it would be nothing short of devastating for Ben and our family. 

But we aren’t the only ones. In fact, we’re pretty fortunate so far. Mike works for the state and has his choice of excellent healthcare plans, of which we have chosen the most thorough and economical coverage. Many are self employed without access to such benefits. For us, the cost of healthcare thus far has been a strain, but one that we can manage. For many, it’s already past management and only set to get worse, highlighted in this Washington Post article. 

Look at smiling 12-year-old Parker from Utah, who needs a feeding tube, an aspirator, a trach and loads of medication to survive. One drug costs $100,000 a year. For a while, his family relied on food that neighbors left on their doorstep because Parker’s medical bills were so high after their health insurance capped out.

I’ve followed Parker’s story for years now, and his family deserves better.  They’re working hard, being resourceful, and just want their son to live! 

Here’s the thing, we have spectacular medical science that’s evolving and growing daily. We are able to save lives that just a few years or decades ago were hopeless. It’s marvelous, simply marvelous. But it’s expensive, as would be expected, too expensive for any but the wealthiest citizens to afford. Do we reserve such marvels for those who can afford to buy it? Is modern medicine a luxury for the few?  Is it a commodity available to only those who have the cash reserves to pay for it?  

How do we decide who gets this care?  Do we deny children whose parents don’t have jobs with a hearty benefit package?  Or do we put caps on it and say we can only spend so many dollars to save a person’s life, and after that just shrug it off?  Or do we leave people with mental illness without access?  This is dangerously close to eugenics. I shudder to think that denying Medicaid coverage for mental illness is a tidy way of saying society shouldn’t be obligated to help them. 

Finally, I want to point out that it’s the “pro-life” party that is endorsing all of this, and I’m calling bullshit.  There is nothing life affirming or life-protecting about any of this.  This is prioritizing finances over people and it’s repugnant. If you suggest that charities or churches should fill in the gaps, please just get off that ridiculous notion. In eleven years of managing complex medical, developmental and psychiatric needs, we have tapped into private resources to a great extent, I’m quite savvy at finding and accessing them, and we have had a church with a congregational care employee who identifies and designates church resources for families in crisis. Between the two, the help has been incredibly helpful for certain things, but only a drop in the bucket compared to the day to day impact of copays, deductibles, time and miles. It’s simply not feasible for private organizations to offset such monumental costs. 

So I ask you, do you really think it’s okay for people to suffer and die when medical care is available, but not affordable?  


cancer · special needs parenting

What is the Problem With Using Scripture Out of Context?

I posted this scripture to Facebook about 6 months into Ben’s treatment for leukemia, 7 years ago today.  I posted it to comfort myself.  Everything in our lives was being devoured by locusts, and I had to find some hope that there would someday be some recompense.  So I looked to scripture, and voila!  It’s in the Bible, God’s word, and I took the coincidence of finding that scripture on a day that it was something I desperately needed to hear, and embraced it.

Without considering context.

Today I looked up the whole passage, then looked up commentary on it.  Chagrined is a good word to use to describe how I’m feeling about now.  This chapter of scripture is written by a prophet.  What do prophets do?  They warn the Israelites when they have strayed from their end of the covenant made with God, and warn them to get back on track, then he reminds them of God’s promises for when they return to him.

This verse has nothing to do with childhood cancer, life after childhood cancer, or any kind of promise God is making to me as an individual who has endured suffering.  

I wish it was about me.  I wish it did work that way.  I loved reading scripture that way.  When scripture is read out of context with individual verses used as reassurances, promises, and warm fuzzies for our own lives, it feels good!

Until it doesn’t.

You see, I clung to verses like that.  I decided that God owed us one, or a few.

Between our family members, we have had more than a few locust eaten years.  Two back surgeries for Mike, neck surgery and GBS for me, and Ben has had only brief periods of his life, months out of his eleven years, in which he has been both physically and mentally well.  We parented our niece whose mother died of a heroin overdose, and lived out her heartbreak on a daily basis.

It’s easy to see why I would want to believe in a God who restores those years, but that’s not the only verse so commonly used that way.

The LORD your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will.  Zephaniah 3:17

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

Both of which are taken out of scriptures that were used to rebuke and remind the Isrealites, not for a mom desperate for a better future for her family.

And there are dozens more.

I put my hope in those promises that were never meant for my circumstances.  The end result was devastating.  I had myself convinced that when Ben finished his leukemia treatment that we would be rewarded for our faithfulness, not only in those years, but so many before, with restoration.  The devastation from the realization that he will be forever impacted by late effects of chemo and the other illnesses, both physical and mental, which make almost every day in his life an enormous challenge has been monumental.

In retrospect, I believe that my own, and many others, well-meaning use of scripture in this fashion is misguided at best, and could easily be considered sacrilege.  It’s an easy button for comfort.

It has to stop!

In my own experience, what would have been far more effective, kind, and beneficial, would be sitting with us in the pain.  Stepping into the gap and sharing the burden.  Instead of quoting scripture out of context, read the scripture, especially those red letters in the gospels, and apply it to your own life and be the gospel in action.

 

adoption · autism · cancer · Down syndrome · special needs parenting

Welcome to Holland? Or Welcome To The Amazon…

 

There’s a popular poem about the experience of parenting a child with a disability called “Welcome to Holland“.  It was an apt description of how I felt when we found out and processed the fact that Alex has Down syndrome.  However, I find it lacking for the more significant disability Ben has, so here is my own analogy:

When you walk through the woods near your home, you’re exploring. It’s fun, interesting, and exciting. While doing such things I have come across snakes (the Eastern Hognose variety), raccoons, unknown dogs (one who attacked my dog and me) and occasionally people I don’t know. Doing that exposes me to more variety and slightly elevates my danger from that of staying at home.  It’s a good, wholesome, fun, enjoyable, and completely normal thing to do.

That’s what having a typical child has been like for me.

When I visited Arizona I went for a run on a public property near the home of my in laws. There were cacti all over the place, and I made mental notes that snakes that I might encounter would be of a venomous type, and that even such things as ants, which in Michigan are fairly benign, could cause me real grief.  It was a bit more nerve wracking, a bit more exciting, and overall a great experience.  I recognized that I was outside of my comfort zone, but it was within a reasonable proximity of normal, and it was more of a mindset change than anything else.

That has been my experience parenting a child with Down syndrome. We took normal and kicked it up a notch.

The territory we unknowingly entered with Ben is more akin to an equatorial jungle. The vegetation is so dense that making headway is arduous, slow, daunting and barely manageable. The variety of the flora and fauna is stunning.  And terrifying.  It’s crucial to remain focused and attentive every second, even sleep is a luxury during which a certain vigilance must be maintained.  Specialized equipment is necessary to survive. Dangers lurk on every branch, flying, crawling, swimming.  A brief break from watchfulness could land you in a life or death situation.  It’s incredible it’s not for the faint of heart; only small populations live there, and tourists are few and far between.

This is life parenting a child with complex medical, developmental and mental health needs. It’s life on the edge.

We’re a highly specialized bunch, it’s adapt or die here, and adapt we do.  We develop skills and equipment to manage our extreme environment, always looking for the next breakthrough. We’re capable and savvy, though a bit more fierce than most civilized populations.

In the welcome to Holland poem, the comparison is Italy to Holland, but if you were planning a trip to Italy, imagine how woefully unprepared you would be in the jungle.  Even for us, planning another trip to Arizona, would be completely lacking in equipment and skills for the actual journey we’re on.

That’s where this analogy differs from the Holland analogy.  This isn’t a trip that we’re fairly well prepared for, this is being dropped into a place where we don’t have the knowledge, skillset or equipment to survive, we have to ad lib the whole thing; our only skillset is improvisation and the will to survive.

The most implausible part of it all is that we actually succeed at it; by sheer determination, fueled by passion and love.