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. 

parenting · special needs parenting · Uncategorized

“Should Have Aborted” (said the troll)

While I don’t want to give any undue attention to a troll, a rotten comment on one of my posts seems like an opportunity to examine the notion that we “should have aborted”. 

Abortion was never an option for me. I don’t suppose that surprises any readers. From the moment I knew I was pregnant I delighted in my children, and spent days fascinated by the magic occurring within me and the outside changes to my body. 

I didn’t suspect that my children would be born with a disability, and naively I just decided that I would love them no matter what, and declined any and all testing. 

When Alex was born and we were told he likely had Down syndrome (the testing takes several days to return, but we had accepted the diagnosis before it was confirmed), we were taken aback. I wondered if my husband would still want to bestow his grandfather’s name upon our son (he did), I wondered if our marriage would survive (it did, and I have since learned that parents who have kids with Down syndrome have a lower rate of divorce than average). There were many more questions and doubts both immediately and over the following years. 

Even though sometimes it’s tricky and tiring, I have never, even for the briefest moment, wondered if we should have aborted. 

If we had aborted we would have missed out on the sweetest boofy baby hair and the best smiles ever. 

If we had aborted, we would have missed out on so much joy, laughter, and fun. 

If we had aborted we might have missed out on a more unconditional love than we have ever witnessed elsewhere. 

If we had aborted we would have missed the best hugs ever. 

If we had aborted we would have missed many milestones which were only sweetened by their late arrival. 

If we had aborted we never would have known that Down syndrome would change us so much that we would want another child who has it. 

In the end, I feel compassion for the person who would troll a parent of a child with a disability by saying they should have aborted. I’m thankful we were able to see Alex as a child, a treasured human being who has so much to offer in this world. 

Last, it’s hard to be offended when your heart is full, so you picked on the wrong mama, you troll, but I did report it because I don’t know who you might troll next, and if it’s someone in a rough patch, I hope to spare them the stress. 

Best wishes troll-man, I hope that some day your grinch heart manages to grow. 

parenting · special needs parenting

To My Husband On Father’s Day

That pair of slippers the kids and I are giving you for Father’s Day doesn’t seem adequate. If I was to give you a worthy gift to honor your parenting it would be something like a caribou hunt in the great white north. Since the hunt is currently out of reach, I hope the slippers suffice; for now anyway. 

When I consider what you do, day in and day out, I don’t know how I could ever honor you enough, but maybe just listing what you do in a day would be a good start.  

  • You get up with Ben during the night because he goes back to bed better for you. 
  • You give Ben his meds because he takes them better for you. 
  • You start Ben’s daily bowel flush because he complies better for you. (Is anyone noticing a trend here?)
  • You catheterize Ben because he prefers you to do it. 
  • You take the boys outside with you while you do odd jobs around the house. 
  • You notice when laundry or other cleaning gets backed up and take the time to do it. 
  • You maintain the house, constantly making improvements and adaptations for the boys. 
  • You make sure I have time to take care of myself and exercise. 
  • You take Hannah on a father/daughter fishing trip every year. 
  • You maintain our vehicles. 
  • You pinch hit for any of the tasks I normally handle including doctor appointments, school dealings, and driving the kids wherever they need to go. 
  • You show me daily how much you love me, and say it too. 
  • Oh, yeah, you work full-time too. 

There’s more, so much more that I actually take for granted because you just do it. People often tell me that they don’t know how I do it. The truth is that it’s a team effort, it’s us managing this complex life, not me. 

Today I want you to know how much I value you. I want to thank you for making sure we’re equally yoked because the weight is lighter for both of us when we share it. 

parenting · special needs parenting

Screens, Summer and Sanity

Screens are the bane of my existence, yet a necessary evil.  I see people giving their kids “80’s summer’s” and turn every shade of green with envy.  It’s not going to happen here.  We do screens here.  I get grief for it.  I feel guilty about it, but we do them.  More than we should.

The iPads started as learning tools.  What a great resource with apps we could use to facilitate skills for our kids.  Yes we do use them that way, but for the most part, they’re the only way I can get anything done, and actually get a few minutes here and there to check out of parenting.

If you’re rolling your eyes at me, please listen.

My boys need constant supervision.  Alex has mild to moderate cognitive impairment, which means he can read, do math, etc., but it doesn’t tell the whole story.  Today he walked out of the house.  I heard the door shut and followed him.  He was leaving for Disney World.  He loves all things Disney, and wanted to go to work at the park as a cast member in one of the parades.  Had I not been on my toes, I’m not sure how far he would have gone.  Less than a month ago he snuck out to walk to school while I was sleeping.  He made it almost a mile down a road with a  55 mph speed limit.  Thankfully I found him in one piece, but let me be clear, I need to watch him like I would a preschooler.  It’s not hard to parent just Alex without the screens.  In fact, when he’s home and Ben is in school we stay pretty busy together.  He loves to do chores and help out in every possible way, as well as going and doing things.

Then there’s Ben.  In a self-contained special education classroom with 4 staff members per 10-12 kids, Ben has to have a staff member within arms reach at all times in order not to get hurt or hurt someone else.  It’s hard to explain to people who don’t know, but he has multiple mental health diagnoses, and has explosive behavior, frequent meltdowns, and needs constant, undivided attention.  Except when he has his iPad.  During those times I can let my guard down ever so slightly.  When he does play with toys, it’s pretty rare for him to play by himself.  Even in school his teacher reported that one of the things she intentionally worked on was to get him to tolerate doing anything without adult interaction.  We frequently comment to each other that the intensity of parenting Ben is like that of a colicky infant who doesn’t nap.  We’re eleven years into this, and have a lifetime stretching ahead of us.

In my defense, every single day I take both boys out and play with them for as long as they will tolerate in the weather.  We play games, go for walks, play in the water, go to parks, whatever we can to get fresh air and free time. Mike does likewise. But in case it isn’t obvious, I can’t send my kids out to play without parental supervision.  Ever.  At all.  We also play with them in the house, legos, cars, games, you name it, we spend a couple of hours every day playing with our children.

So, what do we do?  We let them use screens when we need a break.  It’s a complicated, love/hate relationship, and honestly, I don’t know what else to do.  What would I have done before iPads?  Good question.  I’m not exaggerating when I say that the ability to sit down and write this is 100% dependent on Ben’s iPad.  And to be realistic, Ben’s survival is a modern marvel.  That 80’s summer?  Ben probably wouldn’t have survived leukemia treatment if he had lived in the 80’s, the statistics for survival even 30 years ago are dire.  So we’ll take our summers, screens, living child and all.

We are aware of the pitfalls of screen use, and we do our best to balance.  And honestly, if you take issue with it, I would love to offer you the opportunity to do better!

parenting · running

Staying Active in Order to to Stay Active

It rained this weekend, a socked in, chilly spring rain. So this afternoon when the sun finally peeked out we had plenty of stink to blow off. I hauled the boys outside for a rollicking game of frisbee with a little tug-of-war with Meg and fetch with Abbi thrown in.  

We shared some laughs, mostly courtesy of Meg, and Alex taught me how to dab and nae nae, which evidently means I’m almost as cool as Betty White. (Apparently I have some work to do).  

It was bliss

I kept thinking that this is what life is really about. Horsing around, laughing and making memories together. 

And it occurred to me that I want to keep doing this kind of thing. Not just until my kids are grown, but as long as there’s breath in my body.  

I took a moment to deeply appreciate today, realized that I am not guaranteed another second here, and yearn for the ability to continue to create and enjoy moments like this.  

It’s at the core of my passion for exercise. Activity begets activity; I stay active so I can stay active. When someone suggests going for a hike, I want to be the first to don my boots, not only now, but for as many years as can.  When I see those videos of octogenarians running marathons, I don’t just find them inspiring, I want to do it. 

Every single step I take today is an investment in the steps I want to take next year, and every year after that, hopefully well into my 80’s or 90’s. And every single step I take today is a return on the investment of last year’s steps.  

Lastly, movement is an act of gratitude. Gratitude for my health, my ability, my strength. It’s not lost on me how fleeting it all is, and that my ability could be altered this very day. While I do hope to maintain it as much and as long as humanly possible, it’s not entirely up to me when or how it will no longer be possible. So today, while I am able, I will be active as an act of gratitude and investment. 

dog · parenting

Or What if I Simply Shed The Regrets?

I almost did it today. 

I was this close!!

I got most of the way through the day without swearing. 

And my house is pretty tidy, if you don’t look to close. 

The laundry is washed and dried, it just needs folding. 

Our meal was really healthy…leftovers. 

I got my self care in…while doing Ben’s flush and getting him snacks. 

I got my dogs out for their walk…after they were home alone for hours. 

The bills got paid!  (This one I actually did!!)

And I never feel quite adequate. 

And I always feel like I monkey around too much. 

And when I spend an hour a day exercising I feel like I should be more industrious.   And when I’m industrious I wish I had taken time for a workout. 

When I take the time to repurpose a chair I regret not packing (or cleaning or being more productive). And when I spend hours packing I longingly look at the chair I’m dying to paint. 


(The chair got painted by the way)

Most days I could go on like this infinitely; world without end. 

The other day my sister jokingly called the story of her life “Choose the regrets you can live with.”  (I believe she meant large scale regrets, and I’m totally taking liberty with it). 

Choose the regrets you can live with. 

I paid the bills, because that’s a regret I know don’t want to live with. 

Long term, I’m not willing to regret a life without regular exercise. 

Long term, I am willing to accept a never-quite-tidy-house.

I’m willing for some things to take the back seat in order to have the time and energy to nurture my marriage and my children  I’m willing to let some things slide in order to stay emotionally and physically healthy enough to manage our household   

When I look at life through that lens, it’s easy to decide what gets priority.  Myself, my marriage, my kids, in varying order depending on the circumstances. 

It might take some getting used to, deciding to just suck it up and live with certain regrets. It seems I’m awfully good at wallowing in them instead. 

And so far that’s gotten me a grand total of nowhere.  

Except sapping my energy. Or beating myself up. Don’t forget wasting time agonizing over taking care of myself. 

Because that’s productive. 

Ya know what?  I’m pretty proud of my chair. After a workout my brain is organized, and I’m more effective in my tasks.  

So what would happen if I simply shed the regrets and listen to what I know my family and I need…with a cuss word thrown in here or there for emphasis. 

parenting

Am I The Only Mom Who Doesn’t Dig Mother’s Day?

I like the idea of Mother’s Day enough, I guess.  It seems like a grand plan to set a day aside to recognize the matriarch of the family, but on this, my 19th Mother’s Day as a mom I’m coming out to say I just don’t give a hoot about it. 

For starters I’m completely uncomfortable with any special recognition as a general rule. It makes me queasy. But if I don’t get it on a day set aside for it, well that’s yucky too. 

And I hate the pressure. I want to recognize my own mom, but what do you get for a woman with distinctive tastes who has had over 70 years to obtain anything she might fancy?  The usual hanging flower basket, or should we mix it up with a Starbucks gift card this year?

Here’s the thing, I know I’m kind of a badass, and while I enjoy occasional kudos, I prefer the impromptu type over obligatory.  So save the love for the day to day moments of good and bad. It’s a lot more meaningful to get a spontaneous hug and “thanks mom” than a cheesy card with a photo of still life flowers. 

But I can get behind a family brunch with some tasty treats, so I’m focusing my efforts there.  Because anything that promotes consumption of chocolate is a movement I can support.