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. 

advocacy · parenting · special needs parenting

Autism Awareness:  Autism Related Anxiety and Obsessive Compulsiveness 

There’s this thing that happens. When Benjamin knows he’s going somewhere his anxiety skyrockets and he perseverates until he leaves. 

So, yesterday when he went to Grammy’s house, we told him when it was time to put his shoes on.  Even though he loves going to Grammy’s house, from the time he finds out he’s going until the car is under way, he cannot avoid an anxiety attack.  As soon as we leave his world is back in order and he’s just ducky. 

This goes for any outing. 

The anxiety used to cause vomiting, but thankfully now it’s only gagging and retching. 

I suspect there are a few factors playing into this. The perseverative behavior of autism, the inability to tell time, which is truly a complete incapacity to understand the flow of time at all, and the intolerance for having any need go unmet.  It makes for tricky parenting. 

In response we go into ninja mode. 

Ninja mode means that we sneak around and go to great extremes to avoid raising Ben’s suspicion that we might be leaving. For example, for a visit to our new house I did all the packing while he was doing his flush and seated on the potty for an hour. 

It’s a high stakes game, because if we slip and he figures out that we’re going somewhere we get stuck in the anxiety cycle of him asking repeatedly “Go bye bye?”  Or if he understands the destination, “Go Grammy’s?” Or “Go doctor?”   It happens a few times a minute from the moment he realizes we’re supposed to go somewhere until he is out of the driveway, and is punctuated by his retching and gagging. 

When such a drastic error occurs it’s often best to just leave the house and drive around until it’s time to arrive at our destination. Distraction rarely works. Picture schedules don’t help, and once the anxiety is triggered there is no going back until we leave. 

Anxiety disorders are common in people with autism, as are the obsessive compulsive or perseverative behaviors exhibited here.  This is just one of Ben’s flavors of autism/anxiety/obsessive compulsiveness, one that significantly impacts his quality of life and ours.  Ben has an unspecified anxiety disorder that has some qualities of separation anxiety plus his own little spin of anticipatory anxiety. While he has some significant obsessive compulsive behaviors, he has never been diagnosed with the disorder. 

Autism is a spectrum disorder and presents differently in each individual, this is just a brief illustration of how autism impacts Ben. This is why supports and therapies are crucial, because it’s the best way to build his tolerance for normal daily activities so that he can live a full and complete life with autism rather than being isolated by it. 

advocacy

Beautiful people with Down syndrome 

Today is 3-21. This day has been designated “World Down Syndrome Day”, because people with Down syndrome have 3 copies, instead of the typical 2 copies, of the 21st chromosome. 

How would one recognize this day?  For me, it’s all about showing people who aren’t acquainted with anyone with Down syndrome just how beautiful, wonderful and treasured they are with photos and comments. 


Elias is a favorite phototograpghy subject of his sister Alicia. He is always quick to smile and his smile could light a room!


Daniel recently became an uncle. He is sweet and gentle with his new niece, and so proud of his new role!


This was taken at the GR Public Museum. This is a portrait of Jenna, who from Day One has been on a first name basis with Joy.


Emery is a sweet, sassy, stubborn and most lovable 7 year old. My life has changed more in the last 7 years then I could ever imagine, and I wouldn’t trade it for ANYTHING. ❤



Ben lives life at turbo speed. He is fully present in every moment!


Alex loves holidays and dressing up. He wants to be a Conservation Officer like his dad, and he is the most sincere person I know. 

What a day to celebrate people with “a little something extra”!  Please join me in celebrating these beautiful lives. 

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 · marriage

What Should I Think When a Recurring Dream Turns Lucid?

A lucid dream is a dream during which the dreamer is aware of dreaming. During lucid dreaming, the dreamer may be able to exert some degree of control over the dream characters, narrative, and environment.  Wikipedia

I have had occasional lucid dreams since early adulthood. During that phase I had watched all of the “Nightmare on Elm Street” movies with my friend Dawn, and Freddie Krueger started invading my dreams.


The dream recurred for many moons, at least a year, before I started recognizing it, and then started changing it. I took care of that burnt creeper, and he finally left my dreams for good.

Since then I have been able to do that with several recurring dreams and an occasional random dream. Once I realize I’m dreaming, I either awaken or change the dream.

Last night I had another recurring dream. It was my light switch dream (does anyone else have these dreams ?). I’m oftentimes in my childhood home, sometimes in unfamiliar places, but regardless, I’m alone and the lights won’t turn on when I flip the switch.

I looked up this dream and found this meaning:

If the light switch in your dream wasn’t working, you are having a hard time figuring out the solution to a personal issue.  edreaminterpretation.com

I’m thinking that one is pretty accurate in context of our current situation (see previous post for clarification).

But this time I was at home, with Mike. (I don’t need a dream interpreter to know that my beloved husband represents strength, comfort and protection) and it was the switch by my kitchen table, which controls both kitchen lights, the garage light, and the lights over the driveway.


I started flipping the switches and this time I knew it was the dream. I got uncharacteristicly angry (I tend to be low key) and went off.  I was yelling words I normally don’t use, tried another switch, and woke up.

I don’t know what you think, but I think this chick has had it. I didn’t get the lights on, but I did stop the nonsense.  I’m not only changing my dream, I’m changing my reality, the reasons I have it.

Speaking of lucid dreams, do you have them?  What do you think yours mean?

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.