autism · Down syndrome · family · parenting · special needs parenting

Let’s Talk About Self-Care

It’s a topic I go round and round with; self-care.

I love the idea of self-care, putting my oxygen mask on first makes perfect sense, if it was actually that simple. The problem is that there is nothing about parenting a child with complex developmental, behavioral and medical needs that makes the oxygen mask analogy work the way it’s suggested.

Having worked with oxygen as a paramedic, if the person receiving it exerts themselves, they need more oxygen. The delivery system is cumbersome and the person is tethered to it in order to get the benefits of the blessed gas. That makes for serious limitations. To put on your oxygen mask adds the burden of obtaining and maintaining the equipment necessary to do so.

Today is the first day in months that I haven’t felt like I have more to do than I could possibly accomplish. Sleep was pretty decent last night, I was only up once with Ben, and this is the first week of 2019 when Ben has no appointments and, unless something completely unexpected happens, no snow days. That means I have a whole week to get work done, work that has been waiting since last year to be touched.

I’ve often live in survival mode. Treading water so to speak. Prioritizing self-care feels like lugging around an oxygen tank in order to keep my oxygen mask on. If you have never tried metaphorically wearing your oxygen mask while treading water, I don’t recommend it.

Like when you’re broke and need gas to get to work to get a paycheck and you put in only as much as is absolutely necessary and just pray it gets you through the week.

Or when you need to get groceries and have to wait for the money to hit the bank account so you make do with leftovers and the odd items at the back of the cabinets for days on end.

Most people have been there (if you haven’t, stop right here and steep yourself in some serious gratitude), and parents, especially moms, of kids with complex needs, live there when it comes to meeting our own needs.

I do what I can. I get outside to soak in sunshine, and field the never-ending phone calls from doctors, teachers, insurance, and more on my little outing.

I take short little trips to see family and get away, clearing my schedule and notifying as many people as possible to not contact me. To do so I have to cram in impossible amounts of work before and after and still manage urgent communications, which often have the bonus of being at odd hours if I get to visit another time zone.

Please hear me, I despise complaining. Kvetching feels dirty to me. I strive for resilience and optimism and strength. I bathe in gratitude for what we have on a moment by moment basis. I find joy in the little delights of the day, like when my pileated woodpecker friend visits my suet feeders or the belly laughs over the antics of my kids and pets and even my husband. There is so much that I do to keep keeping my head above water.

I’m not a whiner.

But as I tread water and continue to do everything in my power to keep my nose out of the water, my oxygen tank was kicked off long ago as more of an anchor than anything beneficial.

Having the resources for self-care, much like having the bank account that allows you to fill the gas tank all the way up every time it’s low and load up a shopping cart with goodies as the need arises, is just not something that everyone can just do. Not everyone can find the time, money and energy necessary to take care of herself.

And being told how important it is doesn’t help. I’m not diving to the bottom of the lake to retrieve my oxygen tank, that’s precious energy I can’t afford to expend. Every single fiber of my being is dedicated to staying afloat.

I like to wrap up posts neatly, whenever possible on a lighter note. I’m not comfortable being this vulnerable and blunt. It’s nice to leave my readers with a warm fuzzy for their day. But this is truth. Not just for me, but for so many of us. We’re out here just keeping on. I just want you to take a minute to see us.

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

Letting Go of Hope Was the Best Thing I Ever Did

It happened after leukemia treatment ended.  I had spent over three years during treatment waiting for everything to get better, and then it didn’t.  I gave it time, it still didn’t.  I gave it more time.  You get the picture.

Since bringing Ben home, I had consistently set my sights on the next hill, just knowing that once we got past that next hill the downhill roll would begin, and his quality of life would dramatically improve.

And so would the rest of ours.

It happened over and over and over.  Sometimes things would get better, but it never lasts.  And you know what they say about hope deferred.  I lived for years with the heart sickness of deferred hope.

Until I let it go.

Don’t get me wrong.  We’re still diligently pursuing every avenue possible to give Ben the fullest, best life possible.  I’m just realistic that he has a complex, convoluted situation, and that we need to live our best lives in the present rather than chasing an elusive dream of an idyllic, or even normalish, future.

In so doing, I have avoided the devastating crash of the next wave coming, because instead of stubbornly believing that it isn’t coming, I’m dutifully preparing and watching for it.  Instead of constantly setting my sights to an unlikely future, I’m living today and working to make it the best today possible.

By being realistic that each day and the foreseeable future will be just as challenging for him, I can manage our resources to make sure each day is the best we can make it with the challenges instead of wishful thinking of coming days without challenges.

Letting go of that wishful thinking nearly crushed me.  I so want for my boy to be happy and healthy in every possible way, and admitting that the next breakthrough wouldn’t necessarily make that happen was a paradigm shift of epic proportions.  It left me learning a whole new way of coping with life with the complexities of my child’s needs, but I did learn.  I learned to be more steady and cautious with my energy and optimism, and to live fully, focusing on each day and giving it my best in the moment.

And though letting go of hope comes with a certain sadness, it also comes with freedom and peace.

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?  


parenting · special needs parenting

If You Happened To See Us In The Store The Other Day

You might have wondered what on earth was going on.  We stopped briefly to get cupcakes for Alex to share with his friends at school for his birthday. I zipped up an aisle to get some flour to fry up some morels and Ben lost it. I wasn’t sure what the trigger was, but since we had what we needed, I hurried to the checkout lane and tried to distract Ben, which didn’t work. At all. 

I debated the best course of action and decided that Alex deserved the cupcakes I had promised him, come hell or highwater. 

I herded Ben over, hoping to contain him in the lane, but that didn’t work either. Ben kicked Alex, angering him, then lashed out at me. 

We managed to get our things paid for and tried to leave, but Ben froze. 

I wound up wrapping myself around him, hauling his 85 lb. thrashing frame across the full parking lot to the van, where Alex waited, having gone ahead. 

Ben’s meltdown lasted the 10 minute ride home, then a solid half hour (possibly longer) once we got home. 

I found out when we got home that Ben had spotted birthday cakes in the aisle with the flour and wanted to choose one for Alex. 

Had I known I would have just let him.  

If you’re wondering why I didn’t punish him, it’s because it doesn’t work. Did you happen to see the movie “Rainman”?  If so, maybe you’ll remember how upsetting it was to Rainman when Charlie got angry. It doesn’t work, it doesn’t help, it just escalates an already out of control situation. 

If you’re wondering why I didn’t just walk out, I knew when I walked in that there was a certain likelihood of Ben having a meltdown, it was a calculated risk, and I walked in prepared to follow through and get Alex’s birthday treat. 

If you’re wondering why and how I stayed calm, it’s from years of practice, and because “low and slow” is what keeps things from getting worse. I will admit that sometimes it’s harder than others to keep my cool, and that sometimes I don’t, but when possible, it helps. 

If you’re wondering if there was something you could have done, that’s a very good question. Maybe. Sometimes an unexpected occurrence, like a stranger stepping in, aborts the meltdown, but it’s equally possible that it could have escalated things. 

If you suspect that I’m a crappy parent, some days I am, and some days I’m a pretty stellar parent, and most days I’m fairly decent, just like most other parents. My parenting isn’t the cause of the meltdown though, those are a complex combination of factors that I only wish I could control. 

If you think he’s always like that, he isn’t. Ben is a complex and dynamic human being. Sometimes he has meltdowns, sometimes he’s so sweet he melts my heart, sometimes he’s feisty and funny, and there are oh, so many more adjectives could describe him. You saw a snapshot. Just like you can take a photograph of an attractive person that catches them in an ugly moment, you caught a rough moment in time. He does have those, but they don’t define him. 

If you feel sorry for him, us or me, please listen. Compassion and empathy for a challenging situation are welcome, but we don’t need pity.  We need acceptance and pity won’t get us there. We need to keep giving Ben opportunities to go out because the less he does it the harder it gets. So we’ll keep taking these chances and sometimes he’ll do okay, and others he’ll have meltdowns. For his benefit and everyone else’s, we’ll keep going out, because isolation isn’t an option. 

Here are some photos of Ben on happier days. And when you look at them I hope you see how worthy and treasured he is. 

special needs parenting

Sometimes All You Need is a Spiffy Pair of Rain Boots

It was one of those mornings. Hit or miss, where I’m dancing across eggshells hoping to get Ben to the bus without a total derailment.

I’m not as good this as my husband who enjoys SuperParent status, so I’m over my head from the get go.

It goes like this:  Ben didn’t want to take his meds so I pretended to give them to Meg so he’d take them. Ben didn’t want to do his flush so I pretended to put his catheter into my belly button so he would say, “No, me!” Then I tried on his harness for the bus and flopped. He didn’t want to play the game any more. With the stakes maxed out and the bus chugging up the street toward our house we were at an impasse.

I feel for him. Before 8 am there are at least a dozen unpleasant things he has to endure. What a rotten start to a day?! Add to that his inability to understand it all. His meds control and treat several minor to major conditions, none of which make any sense to him. It’s just stuff we try to squirt into his mouth that tastes nasty, and more often than not makes him gag or vomit. And his flush and catherization are a huge quality of life improvement from having accidents and retaining urine, but again, it makes zero sense to him, and it’s an unpleasant hour of his day. I could go on and on. Every day, numerous necessary and unpleasant things he’s forced to do for reasons that he can’t begin to comprehend. Add to that some significant pyshiatric conditions the decrease his ability to regulate his emotional response.

Then after being bombarded all morning with crummy tasks he’s zipped into a harness and escorted to a bus.

And by then he’s had it.

Many days I wrestle him into his harness and shoes and wrangle him down to the bus.

But today was different. As I wracked my brain to find one more way to entice him instead of fight, I remembered a “new” pair of rain boots handed down from his cousins that had been stored in the garage. Boots he hadn’t worn before. Rain boots for a gloomy spring day. 

Those rain boots did the trick. Ben was just dazzled enough by his boots that I snuck his harness on while he admired them.  Then I convinced him that his bus driver would be super impressed by those boots, and he trotted right down the driveway, excited to show off his spiffy new look.

Today it worked. Today he hopped right on that bus, and my sigh of relief was just as huge as the tears I couldn’t head off last week when the outcome was the opposite.

Sometimes the mental gymnastics work, sometimes they don’t. Sometimes I can pull it off, sometimes I flop. Some days we succeed in the final moments, some days we go down in flames. Every time it’s exhausting  for Ben and for me.   

parenting · special needs parenting

I Just Remembered How to Manage Childhood Insomnia 


Last night I had a couple of hours of insomnia. As an adult with a toolbox full of coping mechanisms and a million thoughts to distract me, I stayed in bed and tried not to wake Mike, while allowing my mind to wander. 

As it wandered I thought of Ben.  Ben has almost 11 years of insomnia under his belt. No matter what we do, he doesn’t sleep well, and believe me, we’ve tried everything under the sun. But what I was thinking about was not his insomnia, per se, but the idea of expecting a child to cope with chronic insomnia by staying in bed. 

It would be impressive for a neurotypical child to have the skills to cope with chronic insomnia without summoning parents, but for a child with neurological differences, how could I ever think he would be able to stay in bed. 

I know my child, he has traumatic stress, anxiety (primarily separation anxiety), little impulse control, and doesn’t understand negative reinforcement, rather, he thrives on positive reinforcement. 

Putting that all together, I believe it’s completely impossible for him to stay in bed when he can’t sleep. 

So now what?  

I go back to the lovely, late Dr Karyn Purvis for an answer I saw long ago, though I often need reminded. 

This video, and really all that I have ever seen of her makes me long to crawl up into Dr Purvis’ lap for comfort and warmth. Likewise, I desire to be that person for Ben, knowing how desperately he needs that comfort and warmth. 

And I resolve, again, to approach his insomnia from a place of acceptance.