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?



For the People who Wish Moms were More Real

Sometimes I see posts on social media about how we shouldn’t just show our good side off, that we need to be real. So whoever it was that shared those posts, this is for you. 

  • I’ve been in my pj’s since 6:17pm. 
  • I fed my kids leftovers for dinner. 
  • My husband called while working out of town and said he had to get off the phone because he was pulling into the restaurant where he was going to have supper. 
  • I hung up quickly to avoid saying something trite. 
  • I said it anyway, and double checked that the phone had disconnected first. 
  • I should be getting Ben’s meds ready right now but I felt like farting around instead. 
  • I yelled at Ben for melting down while I fixed his drawer because I was “too loud”, even though earlier today my ears felt funny and a noise was driving me batty and I empathized with his auditory sensitivity and promised myself I’d be more compassionate about it. 
  • The boys and I have all been staring at electronics for far longer than is good for any of us. 
  • I feel guilty about most of the above. 
  • Now there’s a puppy on my lap, so I’m not moving any time soon. 
  • I think I’m the only mom in the world who loves daylight savings time, and it’s because Ben now gets up at 5-something instead of 4-something. 
  • A day like today happens more often than I care to admit. 
  • I’m admitting it anyway and hoping that the people who say they want real life aren’t just saying it and don’t throw me too much shade. 
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.

parenting · Uncategorized

I’m Planning My Victory Lap!

I suspected I’d be a hot mess.  Or melancholy at the very least.  Perhaps bittersweet.

Instead I’m just planning my victory lap.

Hannah is my only “totally typical” kid.  She was my first, and drop kicked my into motherhood, and then we added one child with Down syndrome, a niece who became our child and another child with Down syndrome plus.

Hannah’s it.  My only child who I parented all the way through and who I will send off to adulthood in a fairly normal fashion.

And on the eve of her 18th birthday, I’m all like, “hey, we didn’t do half bad.”

But get this.  We don’t know exactly what she’s doing next year.  A photography internship and some online classes are on the docket, but we don’t have the big college acceptance letter share that I so eagerly anticipated when she was younger.

And I don’t even mind a little bit.

You see, Hannah is my only “totally typical” child, but she’s really not so typical.

I remember looking into her newborn eyes knowing that I must prepare her to fly.  I sensed her free and adventurous spirit, and knew that her path would not be a common one.

As she grew, I saw and embraced her free spirit, her artistic ability, her deep insight and love of music.  I observed her eclectic tastes and her certainty of what she liked and disliked.  Her willingness to try new things and speak her mind.  And I loved her more for every offbeat step she took.

In a few months she graduates, and I’m cool with that too.  She wants to travel, and photograph the world and create art, pursuing a simple and free path.

As I launch her in that direction, I feel as if I’m preparing for a victory lap.  My role as her mother will change, I will no longer be chasing the finish line, from here on out it will be the finale of a race well run.

Truth be told I hope she permits me a few laps, because I think I’m in for some serious fun parenting this adult.


parenting · special needs parenting

9 Ways that Alex Lives a Simple, Beautiful Life

Mike and I often wonder what goes on in Alex’s head (in a good way).  Alex very obviously experiences the world differently from the rest of us, and when I observe him, I wish I had a pair of goggles that would permit me to see things from his perspective. 
Lacking the capacity for that, I decided to intently watch and listen, to see if I could, perhaps, gain some insight. This is what I gleaned:

  1. People are the most important. Alex never takes his loved ones for granted. 
  2. He doesn’t interrupt. Ever. Maybe he’s simply more patient, but I suspect this goes back to #1. People matter to him so he wants to hear us out. 
  3. While he values his inner circle, he doesn’t allow the opinion of outsiders stop him from pursuing his passions or doing what he believes in his heart he must. 
  4. His word is his bond. He won’t tell you yes if he means no or maybe, his yes means yes, and his no means no. 
  5. He has a temper, but all it takes for him to get over it is a little giggle. He never, ever holds grudges. 
  6. Dancing and singing are a daily part of his life. If you happen to see him leaping, turning and two-stepping down the street, pay no mind, his walk has simply turned into a Disney parade. 
  7. The only thing he’s ashamed of is when he hurts others, which is always unintentional. 
  8. He has serious navigational skills. I think he got Hannah’s share. 
  9. Love wins, and he knows it. 

I tend to value philosophy, deep thinking and insight, and sometimes overlook simple wisdom. Thankfully I have a living reminder of what is really important and good in this world, because so often I forget. 

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.

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?