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 · 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 · 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?

 

advocacy · politics

Have We All Had Enough of Nasty Words?

What names have you been called since June 2016?  A Wingnut?  A Libtard?

What names have you called others?  

In some cases we take the names we’re called and embrace them:


And sometimes they just hurt.

In a recent conversation it became evident that name calling has become so bad that when I identified myself as a liberal, the person accused me of using of using names like bigot, sexist, racist and others toward all conservatives. He just assumed that I was against him because he’s been called names by people like me so many times. 

We ended up having a pretty decent conversation that ended with a better understanding of each other and hopefully a lesson that can be applied more broadly.

But it doesn’t always happen that way.

Name calling interferes with understanding and empathy. If I want someone to hear my side of the story, I’m doing myself a disservice if I use name-calling in my tactic.

A quote that I dearly love and use frequently in my own life and in my writing is perfect here.

Don’t Take Anything Personally. Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won’t be the victim of needless suffering.
~Don Miguel Ruiz, The Four Agreements

And then the quote within the quote:

What others say and do is a projection of their own reality…

What I say and do is a projection of my reality.

How do I want to project my reality?  Do I want people to see a person who derides the POTUS and all who voted for him?  A bitter person who paints all those who disagree with me with a broad stroke?  Or do I want to remain open to conversation and understanding with those who don’t share my opinions?  If my desire is the latter (and it is), then if I choose to use slurs or insults, I have undermined my own goals and desires.

There is a simmering resentment bubbling up and nearing a full, rolling boil, and if we let it boil over, or contribute to the boiling over, then we must understand that not just the other side, but our own side also will be burned when the pot boils over. 

I don’t stand clean in this area. I shared a quote suggesting that a subset of Trump supporters were “hypocrites”. I didn’t realize how much so before I posted it, but the use of the term “hypocrite” really chaffed some hides, and rightly so. To those who were chaffed by my choice of words, I apologize.

But some stances and actions are hypocritical or bigoted or sexist, and those do need to be called out. So must we remain silent when we witness wrong actions and words?  Absolutely not!

Might I suggest applying the principle “people first language”?

People-first language is a type of linguistic prescription in English. It aims to avoid perceived and subconscious dehumanization when discussing people with disabilities and is sometimes referred to as a type of disability etiquette.

~Wikipedia

People first language is important to me as a parent of children with Down syndrome. It places emphasis on a person as a human being who has certain characteristics. Rather than a “Downs kid”, I have kids with Down syndrome (or Downs). There’s more to my boys than Down syndrome, it’s only one of many descriptors that can be applied to them.

Using that principle, rather that calling someone a bigot, point out a bigoted statement. Rather than referring to someone as a Libtard, point out the discrepancies in their reasoning and why you disagree.

And furthermore, our President is not a Cheeto, a Drumpf, the Orange One, or anything else. He is the POTUS, and no matter how much you dislike him, please preserve your own dignity by calling him by his name, by his title, or even just “45”.  If you do not have the composure to refrain from slurring the president, then maybe you should do what your mama always said and say nothing at all.

While I am “only” 43 and haven’t lived as much history as many of my friends, I have never experienced the deep divisions and animosity of our current political climate. I’m not the most patriotic person in the world, but at the end of the day, this country is all I’ve ever known. I want it to remain intact and stable, and frankly I want to be able to enjoy a meal with all of my loved ones, who voted in many different ways, without tensions interfering.

As I hop down off my soapbox, I’ll share one last thought. In my family I’m the one who leapt across the aisle. Many of my loved ones have very different political views from my own. I cannot abide the thought of my parents or siblings being painted as racist, sexist or anything else because of their political affiliation, because they are nothing of the sort.  I believe beyond a shadow of a doubt that our hearts are desiring of the same things and grieve the same things, but that we see different solutions. We have common ground and divergence and trust each other to both be following our conscience and Christ himself to the best of our human abilities.

advocacy · special needs parenting

A (not so) Horrible Backslide on the Slippery Slope

I suspect that it started in the early 90’s when I worked at a shelter called The Recuperation Center.  It was a transitional shelter where people from various walks of life could stay after a hospital discharge if they were homeless or their housing wasn’t adequate, until they were settled into housing that fit their needs. Some of the people I met there left enduring impressions.

There was K, the street bum who I later saw as a paramedic student, drunk and passed out, covered in his own urine.  When I met him at the center, he was sober.  A quiet man who mostly kept to himself, he only spoke when spoken to…except that one time. There was another resident there who was a physician assistant student. She was struggling through her Organic Chemistry homework (which is a weeder course for pre-PA and pre-med students because it’s the likely most difficult undergrad course). K sat down beside her and tutored her.  He patiently worked with this aspiring medical provider, guiding her through information that was clearly as familiar to him as his ABC’s.

Mind blown

I met M there too. He was an outgoing, engaging young man.  He was often up and restless during the graveyard shifts that I worked. He might have just needed a good listener, and I always have fit that description. He told me he was dying. He had something called MAC, which I finally realized was a complication of AIDS. (Back before Google it wasn’t easy to find out these things).  He didn’t overshare, but he had lived a promiscuous life as a gay man. He was one of those people I had read about in the book I got from Summit Ministries about the “Homosexual Revolution”. The book depicted people like M as having an destructive agenda, but M showed no apparent threat. I considered him a friend. I felt dirty about it, how could I like this person I had been specifically warned about?  His stay there was brief, and once he was gone I decided not to trouble my mind about such things.  At the time I didn’t know what cognitive dissonance was, even so, I managed to avoid it like the plague.

In my work as a paramedic, I saw families ravaged by poverty. I left pieces of my heart in many homes over those years.  But I knew that if they just pulled themselves up by their bootstraps that they could do better. It was mistakes that got people into those circumstances and correcting the mistakes would fix the circumstances. I was sure of it.

Then it was my family. We brought our niece home when her mother spiraled out of control, addicted to prescription and street drugs. During the 18 months that followed I became an impromptu social worker. Mike and I worked alongside the professional social work team with the foster care agency overseeing our “case”. We found an inpatient rehabilitation center that accepted my sister-in-law, and were elated when she graduated from the program a few months later.  Then she found an apartment and started a new life. Just 6 months later she died of a heroin overdose. She pulled herself up from her bootstraps with a whole team of professional and family support, and it wasn’t enough.

Shortly after that I went to work in the child welfare department of the Christian agency that had overseen our foster care license for our niece (for whom we took guardianship, and parented into adulthood). It was in October of 2008 and you could have knocked me out with a feather when my Christian coworkers talked about voting for President Obama. In my mind Christian=Republican. There was no exception. Yet these women were on fire!  It soon became apparent that they weren’t the only progressive, Christian social workers around. I was surrounded by smart, savvy, Christ-loving people whose hearts were left in pieces in the homes where they served. But these people had graduate level educations in the social sciences, which demonstrated how progressive policies were far more empowering to people in dire straits than pulling on bootstraps.

I listened and learned, retaining a hint of skepticism about some of their more liberal views.

I still voted Republican in 2012.

But I was more moderate. A bleeding heart Republican, if you will.

I kept listening, hearing stories, reading recommended books.  Then I started attending a progressive Christian Reformed Church (yes there is such a thing).  I embraced the progressive messages with abandon.  I was beginning to reconcile my Christian faith with more liberal practices, and was set free from a worldview which insisted that I should love my gay friends but still hate their sin, and that maybe they should somehow shed their gay identity to be welcomed into the pew with me.  The paradigm shift wasn’t entirely comfortable, but it was welcome.

But there’s even more.  When you have children with disabilities, with cancer and complex medical needs you build a community, and my community struggles.

It’s only been a few decades that children with complex needs have survived infancy, and kept in homes instead of institutions, and their families often lack much needed support to meet the needs of children who have numerous doctor appointments, therapies, and daily need to balance.

People cannot believe that we don’t get respite care (other than Grammy), even with Ben’s complex developmental and medical needs. People cannot believe my boys don’t have Medicaid or SSI. They seem to assume it all comes with the package.

It was with the 2016 election that the final straw came down hard and fast.

Last spring I was faced with 2 presidential candidates who I had disliked and I simply couldn’t vote for either. That’s when I started digging to figure out what would be the lesser of the evils, so to speak.  I dug in hard. I fact checked reams of documents about Benghazi and email servers to satisfy myself about all of my misgivings about that, and then dug into policy positions on both candidates.

That’s when I found Hillary Clinton’s disability plan. 

After perusing it I kept digging to find out how she knew about families like mine and why she cared. She had heard the voices of families like mine. She had paid attention to them, and not only acknowledged their plight, but made comprehensive plans to improve the daily lives of families like my own.

When you’re drowning, you need a lifeguard.  In Hillary Clinton, I found one.  I struggled with her abortion position, only to find that she had carefully researched that position as well, and had many policy positions that would reduce the factors that lead into abortion, and that those positions had been demonstrated to decrease abortion numbers significantly in places where they were put into action.  My ideal would be no abortions ever, but I do believe that better birth control options and supporting women in crisis pregnancies is the best possible way to move in that direction.

I’m afraid that the current administration has only deepened my interest in progressive politics with their consistent and persistent policies eroding what little support complex families do have.

It’s not a radical story. As pendulums swing, I realize that mine might swing further left, or back toward center or back to the right, and much of that will play out based upon how our 2-party system continues to evolve.

Even a year ago if you had told me that Hillary Clinton would be my candidate I would have laughed myself silly.  Life is funny like that, isn’t it?