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.

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.

parenting · special needs parenting

Why Is a Homecoming Date a Headline?

This is Alex.

He’s a pretty cool kid if I do say so myself. He is clever, empathetic, funny and just plain sweet.

Alex is 15 years old and a freshman in high school. He has loads of friends, even though we just moved to a new district. People like him, which makes sense, he is a likeable person.

Some time in the next 4 years, I think he would totally dig going to a formal high school dance. He enjoys socializing and dancing, I think he would have a blast. Whether he goes stag or has a date, he would be in for a great night.

But when I think of Homecoming (or Prom), there’s a bit of trepidation. Alex has tons of friends, both in in his special education classes and in the school in general. What if a young lady asks him to the dance? And what if it happens to be a young lady without a disability? And what if the local news caught wind of it and decided that they need a feel good piece to round out their broadcast?

I don’t want my son to be a feel good news piece.

And I don’t want him to be asked to a dance by someone with secret hopes being a the local hero for the day.

I get it, it’s moving. Perhaps it seems like a Cinderella story. But there’s a term for stories that use people with disabilities to play the heartstrings of others; it’s called inspiration porn.

Just like the standard type of porn, you know it when you see it.

And just like the standard type of porn, the subject is objectified in order for other people to get off.

If Alex does end up going to Homecoming, why can’t it be just like every other student in the high school?

Is it because we assume that anyone who would ask him must be some sort of saint? Really? Only a saint would want to get dressed up and spend an evening out with him?

Ouch.

But what other reason would there be for news coverage of two high school students attending a formal dance together?

So please, think about it. Put your child or yourself in those shoes. How would you feel if your high school student got on the news for getting a date for Homecoming? Isn’t that something most students take for granted? Isn’t that a normal rite of passage?

I plead with you, use your critical thinking skills. The next time you see that feel good headline, picture your child as the person whose date to the dance is such a novelty that it’s considered newsworthy. Then pause and reflect on whether that’s something we should embrace as a society.

I don’t think it is.

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.

advocacy · special needs parenting

5 Myths About Medicaid that I No Longer Believe

Tomorrow morning a social worker is coming to our house so we can formulate Ben’s plan of care for the Children’s Waiver Program.  This is a day I have waited, hoped, and fought for for years.

I’m going through the motions, cleaning the toilet, vacuuming the floor, and closing the shower curtain because the social worker had no business in my shower anyway.  All the while I’m fully anticipating a disastrous event just as she pulls into the driveway that will leave me mortified, and last, but not least, I’m noticing a fishy smell in the house that I can’t track down for the life of me.

I finished the pre-approved paperwork to enroll Ben in Medicaid this evening, and in so doing, I’m busting some of my own myths about Medicaid.

  1. I always believed that help for people in need or with disabilities was best rendered privately, by charities and churches.  But this report shows how absurd that notion is.
  2. I always believed that Medicaid was for able bodied people who chose not to work, but it actually grants coverage to many elderly people, children, and people with disabilities.
  3. I always believed that Medicaid was just medical insurance.  However, Medicaid covers many programs and supports for disabled people that medical insurance doesn’t.
  4. I always believed that Medicaid was wasteful and exorbitant, but Medicaid is actually pretty thrifty for a government program.
  5. I always thought I would be ashamed to receive government assistance for my family.  I’m actually relieved.  By getting these supports, Ben will be able to remain in our home, something we have doubted many times because his care is so complex.  Seeing as how in the recent past, most people with disabilities lived in institutions from a very young age, I see keeping people with disabilities in the home and the community as a wise investment that is worthy of taxpayer support, and they have the right, granted by SCOTUS, to do so. 

I don’t know the details about the BCRA (nobody does), but I do know that cuts to Medicaid would weaken the supports that keep people with disabilities in the our country safe and healthy in their homes.  I consider this a worthy and valuable use of public funds.  I recognize that the ACA has many issues and needs reworking, but we must protect Medicaid, and the people who need it.

Now I’m off track down and eliminate that fishy smell.

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 · politics · special needs parenting

What About Those Who Can’t Help Themselves?

God helps those who help themselves.

Originally coined by Algernon Sydney, made famous by Benjamin Franklin.

It’s sound advice.  If I get the ball rolling, God will give it momentum.  If I make good choices, God will bless them.  I’d buy stock in that promise.

But what about Ben?  What about the others that can’t help themselves.

AHA!  Of course.  Ben has good parents.  Parents who help themselves and help him.  Parents who know what they’re doing, can figure things out, and get things done.  Done deal.

But wait.  It’s not so simple.  It takes a team far bigger than that.  It takes 10 specialists, teachers, paraprofessionals, therapists, and much more to help Ben, and eventually, he is almost certain to require round the clock care at a full time, residential facility.

But it’s okay, I’m on it.

Yep.  I’m a round the clock caregiver to a child with complex developmental, medical and behavioral needs, and I organize and facilitate the team that contributes to his well-being.  No worries, though, because God helps those who help themselves and the full time caregivers of those who can’t.

Sweet.  Glad we got that settled.

But then there’s the cost of managing this.  The daily expense of the numerous appointments, phone calls, miles and miles of driving, and of course, the wear and tear on a 130 lb body who daily carries a non-compliant 82 pound child, even with several bulging discs.  There’s that dread that keeps getting pushed to the back burner of what happens if the primary caregiver needs care.  Not to mention the physical therapy and doctor appointments for the caregiver, and the dismal foreboding of the possibility of surgery.  Pshaw.  Not to worry, God helps those who help themselves, so there’s nothing to see here.

Or, perhaps.  Instead of buying into a comforting colloquialism, we could, just perhaps, find out what it is that families who are invested in caring for complex children need to survive and thrive.  Perhaps, wraparound supports provided by insurance or Medicaid for children with severe and complex conditions would be a wise investment for the present and the future.  Perhaps, intact and thriving families are good for the economy and can raise children who are capable of becoming contributing members of society.  And maybe, just maybe, we don’t need to even call it an entitlement.

Perhaps.  But isn’t it easier when God just helps those who help themselves?