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.

advocacy · parenting · special needs parenting

Why Do I Post So Many Pictures of My Kids?

Many bloggers take great care to avoid showing their children's faces, to keep a modicum of privacy for their families. They make up blog names for their kids and keep the family's identity anonymous. I get that, the Internet is far from safe, people steal photos of children and use them for rotten purposes. It seems that it's foolish to churn out photo after photo of my precious brood.

But I do.

It's because I want you to see them, to really see my kids.

I want you to get used to their features; those almond shaped eyes and small mid face that are the hallmarks of Down syndrome.

I want you to see their humanity, their preciousness, and to recognize them as the multifaceted, complex people that they are.

Alex was stared at yesterday. Blatantly, unavoidably stared at for several minutes yesterday. I'm sure it's because he wears his diagnosis on his sweet face. Anyone who might not be familiar or comfortable with Down syndrome will see his differences and not be able to stop examining him in order to perhaps put a finger on just what is different about him.

I want a world where every single person can look at someone with a disability and see the human being, not the difference.

By my sharing of photographs and our daily ups and downs, I hope to give insight that will facilitate that. I want people to understand that my children are as adorable and adored as any other child, and also to realize that there are differences and challenges; both for them and for us as parents and caregivers.

This is all my bodacious effort to make the world a place where they are accepted.

How can I do that if you never see their faces?

I know that some will disagree, and I'm okay with that. In fact I'll gladly listen to any dissenting voice. I've never claimed to have all the answers. I'm just doing everything in my power to make the world a safe, accepting, and welcoming place for my children.

Something many parents get to take for granted.

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?  


advocacy · parenting · special needs parenting

Something Has Got To Give

Every once in awhile, when scrolling through Facebook, I see something that drops my heart into my stomach. Today, it was an article about a murder-suicide.  The victim was Grant, a young man with CP who was nonverbal and wheelchair bound. The co-victim was his father. A school principal, and special needs advocate. The theory is that the strain of caregiving caused the father to snap. 

I pass no judgement on him.*

The strain of caregiving is colossal.  Love is not enough when days and weeks of being overextended turn into years and decades.  And even more so, the heartbreak of seeing your child suffer.  When Ben is having a bad day the heartbreak of enduring it with him is immense.  Some days it’s easy to sink into the abyss of wondering how long it will last; to blame yourself for the circumstances, and to succumb to the inescapable feeling of your child’s struggle. 

Especially when help is almost impossible to access. 

Caregiver fatigue or burnout is a serious concern for parents of children with disabilities, yet if you Google the term, you find resources from the AARP, ALS, Alzheimer’s and dementia sites, etc.  In other words, caregivers are identified as caring for the elderly, not for their children. 

Furthermore, articles place the impetus for resolution for caregiver stress square on the head of the caregiver herself.  Yep, not only do parents have few resources for respite and help, but when we’re overextended in caring for our beloved children, we have to rescue our own selves, as if we wouldn’t have done that in the first place if there were reasonably accessible ways to do so. Getting respite for a child with complex medical, developmental or behavioral needs is outrageously complicated, and if you happen to be above a very low income threshold (just above poverty level), there’s zero help whatsoever in getting it.  And as for hiring a “mother’s helper”, I’m pretty sure no mom on the planet wants their precious tween to be hanging out here when Ben smashes a plate, breaks my glasses or damages my wedding ring (all of which have occurred within the past 24 hours).  

Let’s be realistic here!  Parents of complex kiddos, even those who have decent support systems, are barely keeping afloat, and some just plain aren’t. We’re falling between the cracks because there aren’t that many of us and because we’re too damned busy caring for our children to get the help we need. 

The point of all this?  As a full time caregiver, and acquaintance with many others who are in similar shoes, I’m asking you to stand in the gap for us. Call your state and national politicians, and ask them to make access to respite and wraparound services easier for parents of children with serious disabilities.  Or, just sign this petition

We have to do better. For the children and the parents. 

*Please know that I don’t think murder-suicide is ever okay, and I certainly never want to see it happen under any circumstances. I’m simply saying that humans can only endure so much before snapping.