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

Learning To Be A Joyful Papaya

Every now and again I forget what I’m doing here, and get trapped in the comparison game.  I don’t know whether we’re apples or oranges, or more likely something more exotic like a papaya, but I did it again, I got caught up in comparing us to others like apples to apples. 

It starts so innocently. Yesterday was a gloomy, rainy Saturday with no plans, so I took the time to scroll through Facebook with my coffee. I read complaints about kids getting up early, but the hour this person considered “early” seemed laughable when I had been up for almost 3 hours before that.  It just kept going, gripe after gripe about problems that seem like lofty goals to me.  

I confess, I got caught up in it.  My mind was churning, I felt huffy and flustered and my “woe is me” soundtrack started playing on repeat. I knew I should quit, but there’s a certain delicious self-indulgence that comes with a pity party, and it sucked me in like quicksand. 

Comparison is the thief of joy, and before I knew it I was dissatisfied with everything. 

For me, choosing joy means remembering that when comparing our lives to others it’s best to just remember that we’re papayas. 

We aren’t apples, we have some commonalities with apples, but comparisons with apple families will fail to satisfy.   In order to choose joy daily, I must let go of the temptation of wishing I could make pies and cider and applesauce, because it’s never going to work.  Papayas might not be as versatile as apples, but they’re beautiful, delicious, and worthy and valuable. 

I’m making a choice today. Instead of trying to squeeze my papaya family into an apple mold, I will celebrate all things papaya. I might hanker for a crisp now and then, but  that papaya sorbet will satisfy too. 

Our family is different, just plain different.  Instead of clinging to an ill-fated longing for normalcy, I’ll stop asking our papaya tree for apples and focus on making the most of our papayas, and in so doing I will choose joy every day. 

parenting · special needs parenting

What That Door God Just Closed Really Means

They slammed the door right in front of my husband’s face. We had run clear across O’Hare airport with our new baby tucked into my front carrier to catch the last leg of our flight home with him, and they slammed the door on us. 

There was no recourse. The door would not be opened no matter what we did. 

As we set out to adopt Ben, the doors flew open as if by supernatural command. We had a match in mere days, and as it played out, everything fell into place. We were giddy with nerves and anticipation that day that we planned our untramarathon trip to bring our baby home, with 5 flights a handful of subway rides, and a bunch of adoption paperwork and a new baby smack dab in the middle of it all. All proceeded as planned until that door slammed. 

After exhausting any hotel or rental car options and finding out there would be no more flights until morning, we retreated to a quiet corner and watched Salvation Army volunteers set up cots. 

And in those hours of waiting I questioned everything. 

I had no idea that the slamming door would soon be a symbol to me of our new normal.  Maybe there is no reason, it might be just coincidence, but doors slam on us; specifically on Ben.  

I wish I could step back in time and put an arm around the 32 year old me who was so stymied by that door slam.  I would have so much to tell her, but I believe that I would keep it to these two things, as not to overwhelm her. 

  1. Don’t believe the adages about closed doors. There’s no one meaning to a closed door. It doesn’t necessarily mean that God is opening a window; it doesn’t demand that you break it down; it doesn’t always indicate that you should give up and walk away. There’s no perfect response to every setback, so use your head and figure it out. (You will achieve expert Ninja Batwoman status at this!) 
  2. You possess more strength, endurance and resilience than you would ever believe. 

As the clock moved toward midnight, my husband called his lifelong best friend who grabbed an infant car seat, hopped into his Ford, and drove into the night to rescue us. We learned our first lesson that night about creatively dealing with closed doors when our knight in blue jeans, riding a red SUV saved the day and our tired butts. 

We have spent much of the last 11 years staring, dazed, at doors slammed in our faces. I wish I could say we have adjusted to that dreadful feeling, but I’m not so sure it’s something you get used to and since you never really know when it’s coming, it’s impossible to truly brace yourself.  However, you can use creative strategies and move forward in whatever direction you choose. So be prepared to choose! 

parenting · special needs parenting

The One Thing I Don’t Really Blog About

Happened this morning. As it does many mornings, afternoons and evenings. 

Everything was just ducky. The past few days have been dicey, but I thought this morning that we were dialed in. 

Then we weren’t. 

The bus arrived and Ben lost it. I did everything I could to right the ship as quickly as possible, but in a flash he was past reason. 

So I picked up a thrashing 80+ pound child and carried him down the concrete garage stairs, terrified that this would be the time one of us would be seriously injured, and toward the driveway. 

Sometimes angels take the form of ordinary people, and the nurse on Ben’s bus saw our plight and ran to our aid.  She took one arm and I took kept the other and together we safely got Ben loaded. 

All parties involved agree that his behavior will only escalate if we acquiesce even once, so no matter how bad it gets, we proceed. 

Once on the bus he stomped to his seat, but seemed resigned to his fate…with a rebel yell for good measure.  I noticed the icy cold concrete under my bare feet as I returned to the house. My focus off the ordeal of the morning granted perspective and the tears streamed full force, unbidden.  Often I can remain stoic, but not today. 

I don’t blog about these episodes. It seems taboo to share about behavioral and psychiatric problems.  But it’s a big factor in our daily lives.   This story isn’t unusual for us, it’s a frequent, sometimes multiple times a day occurance. 

In addition to his developmental and medical needs, Ben has a “mood disorder”. What that almost certainly means is that he has childhood bipolar, but his psychiatrist doesn’t diagnose bipolar until after puberty. 

Between cognitive delays, autism and psychiatric diagnoses, Ben is unable to manage his emotional responses. He loses his temper and rages with no concern for anything other than his chaotic feelings. No concern for hurting himself or others. No concern for consequences of any type, if you know about brain anatomy and function, in these moments (which sometimes turn into hours), he is operating solely from his amygdala.   

We have tried and continue to try every means possible to help Ben and to control this situation. Currently the best we can do is drop the frequency of episodes from several times a day to several times a week. 

Now imagine, please try, your beloved, cherished child behaving in a manner that is hell-bent on destroying himself, his environment and all people present. You do everything in your power to help him because he’s your treasured child, but you’re impotent. 

We have experienced the heartbreak of cancer, and yet this heartbreak is of an entirely different level. 

With cancer you are met with compassion, love and support. People try to understand and share your burden. 

With mental illness you are met with shame, silence and suspicion. There’s a strong tendency to blame parents or at minimum, indicate that not enough is being done, or that somehow we’re failing to address or manage the situation.  

There is shame and ugliness heaped upon the grief of parenting a child who is desperately sick. 

I’ve never written about this before, and for good reason. I have longed to shield Ben and us from the shame and ugliness of the stigma of mental illness, and because, for some reason, it’s too taboo to be open about such problems. 

But there are others who live this experience. Pediatric psychiatric units are overflowing, residential facilities have extensive waiting lists. Families are living with this in silence. If I don’t open up, who will?  

My plea is that even if you don’t understand mental illness, even if this makes zero sense to you. Even if you think it’s all a load of bull, that you simply show kindness. This part of our story has nearly broken us, and it’s far from over. 

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?


marriage · parenting · special needs parenting

Marriage or Children, Which Should Come First?

Does anyone else get tired of “in my day we did this and it was sooooo much better!”?  I sure do.  It’s not yesteryear, times change, and it’s a crock of BS to keep rehashing how one generation is superior to others.

Yet, even though his delivery is curmudgeonly and he provides zero data to back up his claim, I do agree with the principle Rosemond presents here.

My husband is my first priority, and I am his.

Although the Curmudgeon-in-chief lacks evidence to cite, there most certainly is ample evidence that prioritizing a healthy marriage is most important.  But that’s not even my point. As usual, I’m delving off into disability territory.

Our children have higher than average needs, and our stress is of an entirely different level. Perhaps not in severity, but in intensity. The daily care of a child with complex medical, developmental and behavioral needs is a constant outpouring of self. If I were a smartphone I would be playing music, navigating and scrolling Facebook simultaneously with multiple apps open in the background. In other words, serious battery drainage.

If I were to prioritize the children first, I would be chronically depleted.

But I don’t.

I prioritize my husband, and him me. One would think that would cause further battery drainage, but instead it’s a power source.

See that baby, that’s a strong marriage. I have a battery charger that goes with me everywhere.  By continually building each other up and giving support, we provide each other with a backup charging system. I know that when I’m flashing red, I can rely on my husband to give me a boost and keep me going, and the same goes for him.

Not only that, but if you’re familiar with the principle of compound interest, a healthy marriage pays compound interest. What we have already invested continues to grow and give returns.

I know anecdotal evidence doesn’t carry much weight scientifically, but my experience fleshes out the evidence of making your spouse and marriage the top priority; giving no exceptions for complex needs, but rather giving increased emphasis on the marriage because of complex needs.

I am certain that the constant source of strength and encouragement that my husband and I provide each other is our oxygen mask that must be applied before attempting to help anyone else, and that it is truly a matter of survival.