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 · parenting · politics · special needs parenting

Does “Pro-Life” Mean the Same Thing to You as it Does to Me? 

When we got the call that our nieces needed help, without question we headed over. We had no idea that we would wind up parenting one of them to adulthood, but even if we had, we would have gone. 

When we chose to adopt a second child with Down syndrome, we were told he was perfectly healthy. Had he not been declared healthy, our affirmative answer would have remained. 

He wasn’t healthy, but we didn’t find that out until after his adoption was finalized. It was too late to get a medical subsidy, even though his medical condition (Hirschsprung’s disease) is congenital (he was born with it), but the doctors in the neonatal unit didn’t test him, and the adoption agency which had guardianship over him didn’t advocate, so he went undiagnosed until well after his adoption was finalized. By all means he qualifies for this help, but after burning up many days and innumerable phone calls, including to legislators, with Ben’s state of birth telling me it’s Michigan’s problem and Michigan telling me it’s a problem with his state of birth; I let it go.  After all it’s only money.  

Now we’re going on 3 years of attempting to secure the Children’s Waiver for Benjamin. This program would cover respite, community living assistance, incontinence supplies and more, but because of the way it’s scored as 3 separate domains, Ben isn’t considered severe enough for the program. (The scoring favors childrens with one, extremely severe issue, such as a child who is ventilator dependent or the most severely developmentally disabled children).  I was actually told that if Ben had injured himself or one of us, such as a broken bone, we would probably move to the top of the list. We are diligent to ensure that this doesn’t happen, and it’s detrimental to his score. Seriously. 

Alas, I have been contacting anyone who will listen, from our local departments all the way up to the Governor’s office and everyone in between as well as our representatives in D.C.  All of whom listen, show concern and empathy, and wring their hands. 

It appears that we have no recourse. 

Our son’s needs have enormous depth and breadth, and our ability to provide them while remaining healthy ourselves is limited, and we are always living at that limit. Often at the expense of our other children. In my exploration of this subject I have found numerous other families in similar situations who are also at a loss. 

The crux of this post is this:  I’m calling BS on pro-life politicians.

Call yourselves what you are:  pro-birth.  Once a child is born they’re hung out to dry.  In the state of Michigan, there are no supports available to any but the most severely disabled children, in fact, less than 500 in the whole state. 

Some families, like ours, keep plugging and do everything in our power to give our children everything they need at any cost to ourselves. 

Some families choose to live in poverty because the supports are more valuable than their income. 

In many states, children with disabilities automatically get SSI and Medicaid. That means that regardless of income, even if it’s into the 7 or 8 figure range, children are eligible for these safety net programs. Michigan is not one of those states.  

In summary, as a strongly pro-life family who has fostered family members and adopted a child with special needs, our own pro-life party has hung us out to dry.   

To me, pro-life means taking the necessary steps to care for children at risk and creating a safety net for families caring for them, not a platform that promotes overturning Roe v. Wade. If you want people to choose to bring children with disabilities into the world, then ensure that their families will thrive by enacting a robust supports program that will empower them to flourish instead of feeling stymied at every turn and using precious resources to fight for every single millimeter we get. 



advocacy · politics

How many roads must a man walk down Before you call him a man?
How many seas must a white dove sail Before she sleeps in the sand?
Yes, and how many times must the cannon balls fly Before they’re forever banned?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

Yes, and how many years can a mountain exist Before it’s washed to the sea?

Yes, and how many years can some people exist Before they’re allowed to be free?
Yes, and how many times can a man turn his head And pretend that he just doesn’t see?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

Yes, and how many times must a man look up Before he can see the sky?
Yes, and how many ears must one man have Before he can hear people cry?
Yes, and how many deaths will it take ’till he knows That too many people have died?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

~Bob Dylan 

I’ve been sitting here in my living room, screaming from the top of my lungs on a blog for a year now. It’s time to make noise in person. 

http://rareaction.org/events/upcoming-events/michigan-rare-disease-day-advocacy-event/

Now to see if they need a public speaker. 

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.