advocacy · parenting · politics · special needs parenting

Why Is Medicaid Such A Big Deal for People With Disabilities?

When people think of Medicaid, they think medical insurance.  Medicaid is insurance, which is important, to be sure, but it is also is so much more.

My husband works for the state, he has a good healthcare policy, so while medical expenses do add up, we have a safety net to ensure that we won’t have to succumb to the financial strain of medical bills.  Even so, I fought a huge battle to get Ben onto the Children’s Waiver program so that he could get Medicaid benefits even though our income (my husband is in law enforcement, and I make a little money here and there with writing, so we aren’t exactly rolling in it) is above the threshold for our disabled children to receive Medicaid.  Here is a list of things that Medicaid provides that we couldn’t provide in another fashion or which has been burdensome to provide.

  • Respite.  We have had friends occasionally volunteer to care for Ben, and my mom helps out as much as she can, but that said, in order to have regular breaks from caregiving, we would need to pay an adult caregiver at least $15/hour (that’s on the stingy end of the spectrum), if not more to care for Ben.  Why?  Because he’s catheterized for urine, has bowel flushes, gets meds 3x/day, and has violent outbursts that require cautious intervention.  Respite means that we can have a professional caregiver who is equipped to do those things and we can give much needed attention to our other children, and just get time to collect ourselves so that we can continue to give high level care.
  • Community Living Supports.  I have written about taking Ben out in public, it’s a crapshoot at best.  It is guaranteed that he will have minor issues, such as running off or taking things off store shelves, but there are times, about 50/50 that things are trickier and the interventions for such behaviors result in a major meltdown.  Community Living Supports will provide a trained person to help Ben learn to cope with going out and all that it entails, giving him a fuller life where he will be less isolated, especially if his behavior improves and we can take him on family outings.
  • Autism benefits.  ABA therapy, which will also help minimize Ben’s negative behaviors and maximize positives.
  • Medical copay/deductible coverage.  As I have said, we have good medical insurance, but every single year Ben maxes out his copays, deductibles, and out of network costs.  It’s thousands of dollars.  Anyone who has a typical family knows what it’s like to have a major surgery, hospitalization, or ER bill suck your savings dry.  For us, even though we plan on it, and max out our flexible spending account, we still also have enough expenses, over and above what we have set aside in our flex spend, to be a budget buster.  Every, single, year.
  • Incontinence supplies.  Ben is incontinent of bowel and bladder.  Even though we catheterize him, and flush his bowel, his incontinence is severe enough that he must wear briefs in order to avoid soiling his clothing.  This is another budget buster, and another item that Medicaid will furnish for him.
  • Psychiatric care and counseling.  As well as other mental health benefits.

This is what will benefit us.  It’s no small list.  Additionally, Medicaid pays for school therapies, and many more services that will help Ben transition to adulthood with the supports he needs.

While we have always just used Children’s Special Healthcare Services, which covers some, but not even close to all, of Ben’s medical expenses, and paid the rest, it will be an enormous relief and benefit to alleviate that financial strain and hopefully have a savings account that won’t take constant hits.  But that’s just the icing on the cake.  What we really need is the wraparound supports that Medicaid, and Medicaid alone, can provide.  It will benefit every member of our family, and maybe, just maybe, we’ll be able to breathe again.  I wonder if we remember how…

adoption · autism · cancer · Down syndrome · special needs parenting

Welcome to Holland? Or Welcome To The Amazon…


There’s a popular poem about the experience of parenting a child with a disability called “Welcome to Holland“.  It was an apt description of how I felt when we found out and processed the fact that Alex has Down syndrome.  However, I find it lacking for the more significant disability Ben has, so here is my own analogy:

When you walk through the woods near your home, you’re exploring. It’s fun, interesting, and exciting. While doing such things I have come across snakes (the Eastern Hognose variety), raccoons, unknown dogs (one who attacked my dog and me) and occasionally people I don’t know. Doing that exposes me to more variety and slightly elevates my danger from that of staying at home.  It’s a good, wholesome, fun, enjoyable, and completely normal thing to do.

That’s what having a typical child has been like for me.

When I visited Arizona I went for a run on a public property near the home of my in laws. There were cacti all over the place, and I made mental notes that snakes that I might encounter would be of a venomous type, and that even such things as ants, which in Michigan are fairly benign, could cause me real grief.  It was a bit more nerve wracking, a bit more exciting, and overall a great experience.  I recognized that I was outside of my comfort zone, but it was within a reasonable proximity of normal, and it was more of a mindset change than anything else.

That has been my experience parenting a child with Down syndrome. We took normal and kicked it up a notch.

The territory we unknowingly entered with Ben is more akin to an equatorial jungle. The vegetation is so dense that making headway is arduous, slow, daunting and barely manageable. The variety of the flora and fauna is stunning.  And terrifying.  It’s crucial to remain focused and attentive every second, even sleep is a luxury during which a certain vigilance must be maintained.  Specialized equipment is necessary to survive. Dangers lurk on every branch, flying, crawling, swimming.  A brief break from watchfulness could land you in a life or death situation.  It’s incredible it’s not for the faint of heart; only small populations live there, and tourists are few and far between.

This is life parenting a child with complex medical, developmental and mental health needs. It’s life on the edge.

We’re a highly specialized bunch, it’s adapt or die here, and adapt we do.  We develop skills and equipment to manage our extreme environment, always looking for the next breakthrough. We’re capable and savvy, though a bit more fierce than most civilized populations.

In the welcome to Holland poem, the comparison is Italy to Holland, but if you were planning a trip to Italy, imagine how woefully unprepared you would be in the jungle.  Even for us, planning another trip to Arizona, would be completely lacking in equipment and skills for the actual journey we’re on.

That’s where this analogy differs from the Holland analogy.  This isn’t a trip that we’re fairly well prepared for, this is being dropped into a place where we don’t have the knowledge, skillset or equipment to survive, we have to ad lib the whole thing; our only skillset is improvisation and the will to survive.

The most implausible part of it all is that we actually succeed at it; by sheer determination, fueled by passion and love.

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. 

parenting · special needs parenting

How Does That Special Kids, Special Parents Deal Work Again?

I’m never quite sure what to think of these sayings. Did God give me special treasures to make me special?  Did he give me special kids because I’m already special?  I’m not sure any of that resonates, and frankly it all seems like a massive oversimplification. 

When we had Alex we chose not to get prenatal testing because we knew that if our baby was born with any type of medical or developmental diagnosis that we would do what it took to parent him. It seemed like a remote possibility to a couple in our 20’s, but sure enough, our child was born with Down syndrome, and sure enough, after experiencing confusion and sadness, we rose to the occasion and continue to do so. 

Does that make us special?  I really hope not. Isn’t that what parents are supposed to do?  

So then we chose to adopt Ben. Special?  I don’t think so, we just realized we were good at adapting to Alex’s needs, and found him delightful, so we figured we would be just as delighted having another child with Down syndrome.  We knew that not everyone has the resources to parent their kids with Down syndrome, so when we recognized our ability it seemed obvious that we should use our strengths to add another child with Down syndrome. Special?  Meh, since when is recognizing your strengths and using them special?

Ben came with a super size package of needs, each of which rolled out one at a time. Each time we have done whatever is necessary to meet those needs. It’s what parents do. They take care of their children no matter what.  If buying hearing aids, coping and helping Ben cope with many medical tests and treatments and hospitalizations is special I guess I don’t get it. What else are we supposed to do?  Our child needs care, we give it. Simple enough. 

We are different.  Going through all of that with a child changes a person for sure. I don’t relate very well to my friends with only typical children anymore. I still love them and care about their children, but when you’re a full time papaya farmer, you give a pleasant wave to the apple folks, but they it’s a more of a passing acquaintance. Maybe the apple farmers think papaya farmers are special, but I think that’s a colloquialism for different. I don’t think that watching all the average families going about their normal business while we navigate this complex life makes us special. It does make us unrelateable and lonely though. 

We’re parents. We’re nothing special. We were handed Uno cards when everyone else got a deck of standard Hoyle playing cards. We’re over here playing Uno and seeking out others with Uno decks. We’re playing our game just like everyone else, it’s just with a whole different deck of cards.  We have different rules and no matter what, our cards will never quite blend with yours, even though they’re the same shape and size.  When those of us playing Uno learn the game and get good at it, perhaps we inspire some kind of awe in the Hoyle card players. But if this very night their deck got traded in and tomorrow morning they had Uno cards, they’d learn to play Uno too. It would be hard at first, and they’d have to get used to new cards and new rules, but they would do it, just like we did, because that’s just what you do. 

Uno cards are less common, more colorful and come with different rules. Papayas are not apples, they are grown and used differently.  Does taking what you’re giving, figuring it out, making it work with love make a person special. I actually hope not. 

I hope that anyone would farm their papayas and play Uno.  I’m sure my analogy is also and oversimplification, but maybe it is just enough to get people thinking. 

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

My Child Can’t Tell Me What is Wrong and it Breaks My Heart

This weekend Ben obviously didn’t feel well. He would hold his stomach, hold his head, was cranky and all out miserable. 

As evening approached he flirted with an elevated temperature. Only 99ish, but with shivers; moaning and groaning with achiness. 

He vomited a couple of times, but it didn’t seem like the Norovirus going around, nor like a Cyclical Vomiting episode. 

So we watched and waited and wondered. 

After a restless night he awoke appearing somewhat better. My husband and I shrugged and exchanged confused looks. At least he was no longer miserable. 

Late in the morning showered him off and cleaned his ears, revealing our answer. Ben’s ear was freshly draining; it was infected, and the pressure and pain had been alleviated when the blockage opened up. 

Mystery solved. 

If only it was always that easy. 

This one has a happy ending, but all too often, our child cannot tell us what he feels; even with something as straightforward as an ear infection. One would think he could just point to his ear and say “owie”, but he never does. Instead we put on our detective caps and do our best to uncover the origin.  We ponder, brainstorm, scratch our heads and shake them too, but all too often we land right back on angst, do not pass go, do not collect $200, and do not guess the real problem. 

And my heart aches and breaks when I try to help and fumble my way through. And my heart breaks that it’s so hard to help. 

We have this child with health problems and an inability to convey his bodily messages, or possibly even interpret them himself. When I think of how impotent I feel in my attempts to help, I wonder what he thinks. He clearly feels rotten and we’re supposed to be helping, solving his problems for him; yet we fail time and again. 

It’s a constant guessing game, remembering past episodes and sorting through symptoms. With this one we had covered our bases with Ibuprofen and Zofran (a nausea drug), but we aren’t always that accurate. 

And Ben suffers without a plea. 

special needs parenting · Uncategorized

The Painful Suffering of Relaxus Interruptus

Ben is at school today.  Can I get a hallelujah?!

It’s not the same as sending them all out the door and being totally alone, but since Ben is my handful, the difference is tangible.

I suspect this is not something that just happens with special needs, though I also suspect that most kids grow out of it well before age 10, but this phenomenon is something I like to call, relaxus interruptus.  Relaxus interruptus goes something like this:  I sit down to drink my beloved morning coffee, and before the warmth even permeates past my mouth, Ben has a request.  Now mind you, before sitting down with said coffee, I got him food, got him meds, and got him settled with a favored activity, but none of that matters when he notices Abbi lounging on the deck and says, “Abbi out”.  Sure enough, Abbi is out.  Abbi can wait, but Ben cannot, so I get up and open the door for Abbi, which is never enough, because now “Abbi eat”.  So I help Ben feed Abbi, which takes 4 times as long as simply feeding her myself.  I then redirect him to his breakfast, and seek out my coffee.

Next thing I know, Ben walks up to me with his clothes, and the cycle repeats.  And it repeats every single time I sit down from 5 am to 8:30 pm.   So even though I have attempted relaxation approximately 973 times, I have not once actually acheived any level of relaxation. I suffer from relaxus interruptus.

As if relaxus interruptus wasn’t enough, there is also it’s sister ailment, laborus interruptus.  Ben’s radar is super sensitive, so he is dialed in not only to when I sit down for a moment’s peace, but also when I get up and do something.  Now with things like dusting or dishes, it’s one thing, but when I’m gardening or vacuuming or writing, the interruptions stymie me.  If you have ever completely lost your shiz and gone off the deep end over a sweet little voice saying, “Ceweo bweese”, you might know the feeling.  It’s not the request, it’s the fact that it’s the 58th request this hour.  Not to worry, I have a whole cache of made up swear words to let fly during these moments.  When the windows are open, I sometimes catch myself and wonder what the neighbors think when they hear my screeching, “Why the green gunderson did you not ask me this 49 seconds ago when you last interrupted me?!”  I suspect that any mom who has ever suffered from laborus interruptus would understand.

Sometimes I try to play with Ben for a prolonged period in hopes that I can fill up his tank and somehow stave off the interruptions for a few minutes.  But after spending 63 minutes zooming cars down the track, saying the color of each, and lining them up according to category, I tell Ben that mommy is taking a break.  He smiles and says, “Oday mom”, and I breathe a sigh of relief.  Phew, I did it, now do I get something done, or steal a few minute break.  I head for a bathroom break to consider my next step, and before I’m done washing my hands, he’s there, handing me a ball, with the cutest smile ever saying, “Wanna pway?”