special needs parenting

Letting Go of Hope Was the Best Thing I Ever Did

It happened after leukemia treatment ended.  I had spent over three years during treatment waiting for everything to get better, and then it didn’t.  I gave it time, it still didn’t.  I gave it more time.  You get the picture.

Since bringing Ben home, I had consistently set my sights on the next hill, just knowing that once we got past that next hill the downhill roll would begin, and his quality of life would dramatically improve.

And so would the rest of ours.

It happened over and over and over.  Sometimes things would get better, but it never lasts.  And you know what they say about hope deferred.  I lived for years with the heart sickness of deferred hope.

Until I let it go.

Don’t get me wrong.  We’re still diligently pursuing every avenue possible to give Ben the fullest, best life possible.  I’m just realistic that he has a complex, convoluted situation, and that we need to live our best lives in the present rather than chasing an elusive dream of an idyllic, or even normalish, future.

In so doing, I have avoided the devastating crash of the next wave coming, because instead of stubbornly believing that it isn’t coming, I’m dutifully preparing and watching for it.  Instead of constantly setting my sights to an unlikely future, I’m living today and working to make it the best today possible.

By being realistic that each day and the foreseeable future will be just as challenging for him, I can manage our resources to make sure each day is the best we can make it with the challenges instead of wishful thinking of coming days without challenges.

Letting go of that wishful thinking nearly crushed me.  I so want for my boy to be happy and healthy in every possible way, and admitting that the next breakthrough wouldn’t necessarily make that happen was a paradigm shift of epic proportions.  It left me learning a whole new way of coping with life with the complexities of my child’s needs, but I did learn.  I learned to be more steady and cautious with my energy and optimism, and to live fully, focusing on each day and giving it my best in the moment.

And though letting go of hope comes with a certain sadness, it also comes with freedom and peace.

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10 Things That Happen When You Have An Unusual Name

Picture this:  

It’s March of 1973 and a couple is expecting their third child.   Deciding on a name in case of another girl proves fruitless (they already have two well-named girls), and mom has been trying to convince dad to name this one after her grandfather (and it’s going over like a lead balloon). 

They sit down to watch the show “King Fu”, (about a Buddhist monk in the old west) and Jodie Foster is playing a girl named “Alethea”. Mom slyly sees an opportunity to nickname the baby “Lee” after her grandfather and both parents agree to the name (and hope for a boy). 

Having an unusual name has it’s ups and downs. For example:

  1. I’ve never had to deal with being one of two or three people with the same name in any situation ever. 
  2. In fact I’ve never met another person with my exact name. I’ve seen Aletha’s and Althea’s, but never another Alethea. (Though I know they exist!)
  3. I’ve never had my name on any item, ever (unless you count “World’s Greatest Mom”.)
  4. I get nicknamed, whether I want it or not. 
  5. Mispronunciations can be comical. I’ve been called everything from Athena to Ophelia!  (It’s pronounced Uh-Lee-Thi-Uh). 
  6. Spelling it every time. Except to the few people who know Greek. In fact clergy always get my name right!
  7. It’s just about magical when someone gets it right, especially when combined with my last name, which is equally challenging. 
  8. It’s so exotic people ask me what country I’m from. (I’m Dutch/German from Michigan, for what it’s worth). 
  9. I feel loved when people use it preferentially (my husband often does and my dad nearly always). 
  10. I turned out to be just as unusual as my moniker, so it’s utterly apt. 
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6 Observations From an Hour at the Beach

Have you heard enough swimsuit conversation yet this summer?  If you’re like me, the answer is probably, “a million times, YES!”  But here I am with my two cents to throw into the conversation.

Yesterday, since our day was already a shit show, I decided that nothing could get worse if I took the shit show on the road, and since the boys love water, we went a few miles down the road to a local lake, in hopes that we could “blow the stink off” as my mom always said.

I don’t actually enjoy swimming, I think it’s because I sink like a stone and have zero coordination, which makes it ironic that I own quite the collection of swimsuits.

I’m constantly in search of the swimsuit.  The one that covers all my scars, stretch marks and cellulite, as well as flattering the girls and magically making me look like Gisele Bundchen, which not a single suit ever made could possibly do, but I hold out hope anyway.

For no other reason than my failure to shave my bikini area before our impromptu trip, I chose a skirted suit, threw it on, and took off.  (After slathering children with sunscreen, getting all the necessary equipment, and having to back up the driveway twice for forgotten items, that is).

Upon our arrival at the lake, I scanned the scene.  You know what I saw?

  1. A bunch of people, mostly women, in a wide array of swimsuits.  Not a single one of them looked like Gisele Bundchen!  NOT A SINGLE ONE!  (So that was a relief).
  2. Every single one of the women had flaws.
  3. Not a single one of them stood out.
  4. It didn’t matter if they wore a bikini, a tankini, or a one piece or any other combination.
  5. Not a single person showed any sign of caring that my girls aren’t perfect, that I have cellulite, stretch marks and scars.
  6. I’m not positive, but I’m pretty sure every other woman there had imperfect girls, cellulite, stretch marks and scars, or at least 3 of the 4.

In other words, every single person there was entirely nonplussed by the whole thing.  As a group, people were having fun, playing with the kids, beating the heat, and enjoying summer.  And on my way home I had to wonder why on earth we get so darned haired up about putting on swim suits.

I get it, I’m not the same as I was when I proudly stood on the dock in a bikini, posing for pictures at age 16, but neither was a single other person there; not a single one!

I don’t know where it comes from, this toxic obsession with looking perfect, but I, for one, am over it.  I don’t want to be self conscious, or believe that everyone expects me to be perfect or notices when I’m not.  That, my friends, is a load of crap, and I’m not buying it.

 

parenting · special needs parenting

When You Can Never Win The High Stakes Game

It’s a high stakes game, this parenting gig. We have precious little folks that we’re responsible for turning into responsible adults, and there’s no single right way to do it.  With all of the factors going into human nature and nurture, getting it right for each child seems to be a crap shoot at best.

Then we add in developmental differences and the learning curve steepens, necessitating therapies and strategies that typical parents never have to consider. Or even the odd combination of phases that occur when cognitive development is delayed. For example, Alex is 15 years old, and is mature and savvy about many things, but has just discovered lying. You know that clumsy way your first grader lies to cover for his transgressions?  We’re right there with a 15 year old.   It’s just as annoying as when a six year old gives it a whirl, but all the more ridiculous with Alex’s man-voice. Just chalk this up to another parenting issue I never saw coming.

Overall Alex is easy though. He’s pretty straightforward, and super fun and funny. His quirks just add a little dynamic to the game.

Then there’s the truly complex child.

I took Ben to a new psychiatrist last week and she was stymied. She called him bossy, challenging, severely hyperactive and puzzling. And that was only a snapshot from 30 minutes in her office. Maybe it was the complete meltdown that resulted when she told us to go, then called us back into her office that bemused her. Or it could have been him splaying full out on the floor of the waiting room when our exit was delayed. Or any of the couple dozen uncomfortable interactions in between.

In this high stakes game I don’t know how to win. My child leaves experts at a loss.

I know he needs me to stay calm, but sometimes I lose my cool.

I know he needs structure and routine, but how do you stick to it with appointments and phone calls and all the necessary behavioral interventions?

I want more than anything in the world to do the best and be the best for him, but I swear it’s like being an actor and switching from “The Jungle Book” to “Rain Man” with “What’s Eating Gilbert Grape” running constantly in the background.  All along I feel like I should be Mary Poppins.

I can’t keep up. 

I can’t switch gears fast enough. I have a hard time hugging when I just got kicked in the face…even though I realize he needs it. I have a hard time playing after recovering from an epic public (or private) meltdown. And that’s not even taking into account the learning and medical needs.

How do I keep up, let alone maintain the therapeutic environment he needs to thrive.

When I write it out I realize how impossible it is, yet I sink into an abyss of guilt when I fail to be absolutely everything he needs, plus parenting my other children.

This is no attempt to garner kudos or warm fuzzies, there is nothing anyone can say that can change the truth.  The kind words are nice, but it doesn’t change our reality.

 

Yet we carry on, ever moving forward, and keep trying, trying, trying.  He’s our baby.  How can we not?  How can we ever stop trying?

Someday, maybe, we’ll find someone who can really help.  Each day we get up resolving just that.

advocacy · special needs parenting

5 Myths About Medicaid that I No Longer Believe

Tomorrow morning a social worker is coming to our house so we can formulate Ben’s plan of care for the Children’s Waiver Program.  This is a day I have waited, hoped, and fought for for years.

I’m going through the motions, cleaning the toilet, vacuuming the floor, and closing the shower curtain because the social worker had no business in my shower anyway.  All the while I’m fully anticipating a disastrous event just as she pulls into the driveway that will leave me mortified, and last, but not least, I’m noticing a fishy smell in the house that I can’t track down for the life of me.

I finished the pre-approved paperwork to enroll Ben in Medicaid this evening, and in so doing, I’m busting some of my own myths about Medicaid.

  1. I always believed that help for people in need or with disabilities was best rendered privately, by charities and churches.  But this report shows how absurd that notion is.
  2. I always believed that Medicaid was for able bodied people who chose not to work, but it actually grants coverage to many elderly people, children, and people with disabilities.
  3. I always believed that Medicaid was just medical insurance.  However, Medicaid covers many programs and supports for disabled people that medical insurance doesn’t.
  4. I always believed that Medicaid was wasteful and exorbitant, but Medicaid is actually pretty thrifty for a government program.
  5. I always thought I would be ashamed to receive government assistance for my family.  I’m actually relieved.  By getting these supports, Ben will be able to remain in our home, something we have doubted many times because his care is so complex.  Seeing as how in the recent past, most people with disabilities lived in institutions from a very young age, I see keeping people with disabilities in the home and the community as a wise investment that is worthy of taxpayer support, and they have the right, granted by SCOTUS, to do so. 

I don’t know the details about the BCRA (nobody does), but I do know that cuts to Medicaid would weaken the supports that keep people with disabilities in the our country safe and healthy in their homes.  I consider this a worthy and valuable use of public funds.  I recognize that the ACA has many issues and needs reworking, but we must protect Medicaid, and the people who need it.

Now I’m off track down and eliminate that fishy smell.

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…

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11 Observations About Being Fabulously Female

This summer I’ll be celebrating 44 revolutions of around the sun, and as such, I hope I have learned a thing or two about existing in the female form.  We’re a pretty remarkable bunch, I must say,  I am continually amazed by the women around me and my own self.

  1. It’s fabulous to be female…except when you have to pee outside.
  2. You can bleed for a week straight (or longer if you’re going through menopause) and not die.
  3. We have a reputation for being catty, but when it comes down to it, we have each other’s backs.
  4. No matter how thin you are, your body will have dimples and rolls.
  5. Fussing about the dimples and rolls won’t help.  (So just get over yourself.)
  6. Women are more likely to cuss than men.  (Perhaps there’s a reason for this, no?)
  7. Boobs are a blessing and a curse, and often both at once.
  8. Speaking of boobs, they’re lopsided, pretty much universally.  (Or is it just me?  Please tell me it isn’t just me!)
  9. We have less physical strength and speed than men, but more flexibility and better senses.  (I personally think there’s some huge advantages here).
  10. Our bodies change enormously throughout the normal lifespan, with more girls having more obvious changes than boys from puberty through old age.  (Fighting it doesn’t help).
  11. Multitasking, we rock at it!  (Speaking of which, I have been interrupted about 58 times during the writing of this post.)

You might notice, these have nothing to do with pregnancy or childbirth.  The capacity to produce children is remarkable, but women are so much more than our capacity to bear children.  I’m sure I haven’t covered them all, what is your favorite or least favorite thing (or anything in between) about being a woman?