autism · Down syndrome · family · parenting · special needs parenting

Let’s Talk About Self-Care

It’s a topic I go round and round with; self-care.

I love the idea of self-care, putting my oxygen mask on first makes perfect sense, if it was actually that simple. The problem is that there is nothing about parenting a child with complex developmental, behavioral and medical needs that makes the oxygen mask analogy work the way it’s suggested.

Having worked with oxygen as a paramedic, if the person receiving it exerts themselves, they need more oxygen. The delivery system is cumbersome and the person is tethered to it in order to get the benefits of the blessed gas. That makes for serious limitations. To put on your oxygen mask adds the burden of obtaining and maintaining the equipment necessary to do so.

Today is the first day in months that I haven’t felt like I have more to do than I could possibly accomplish. Sleep was pretty decent last night, I was only up once with Ben, and this is the first week of 2019 when Ben has no appointments and, unless something completely unexpected happens, no snow days. That means I have a whole week to get work done, work that has been waiting since last year to be touched.

I’ve often live in survival mode. Treading water so to speak. Prioritizing self-care feels like lugging around an oxygen tank in order to keep my oxygen mask on. If you have never tried metaphorically wearing your oxygen mask while treading water, I don’t recommend it.

Like when you’re broke and need gas to get to work to get a paycheck and you put in only as much as is absolutely necessary and just pray it gets you through the week.

Or when you need to get groceries and have to wait for the money to hit the bank account so you make do with leftovers and the odd items at the back of the cabinets for days on end.

Most people have been there (if you haven’t, stop right here and steep yourself in some serious gratitude), and parents, especially moms, of kids with complex needs, live there when it comes to meeting our own needs.

I do what I can. I get outside to soak in sunshine, and field the never-ending phone calls from doctors, teachers, insurance, and more on my little outing.

I take short little trips to see family and get away, clearing my schedule and notifying as many people as possible to not contact me. To do so I have to cram in impossible amounts of work before and after and still manage urgent communications, which often have the bonus of being at odd hours if I get to visit another time zone.

Please hear me, I despise complaining. Kvetching feels dirty to me. I strive for resilience and optimism and strength. I bathe in gratitude for what we have on a moment by moment basis. I find joy in the little delights of the day, like when my pileated woodpecker friend visits my suet feeders or the belly laughs over the antics of my kids and pets and even my husband. There is so much that I do to keep keeping my head above water.

I’m not a whiner.

But as I tread water and continue to do everything in my power to keep my nose out of the water, my oxygen tank was kicked off long ago as more of an anchor than anything beneficial.

Having the resources for self-care, much like having the bank account that allows you to fill the gas tank all the way up every time it’s low and load up a shopping cart with goodies as the need arises, is just not something that everyone can just do. Not everyone can find the time, money and energy necessary to take care of herself.

And being told how important it is doesn’t help. I’m not diving to the bottom of the lake to retrieve my oxygen tank, that’s precious energy I can’t afford to expend. Every single fiber of my being is dedicated to staying afloat.

I like to wrap up posts neatly, whenever possible on a lighter note. I’m not comfortable being this vulnerable and blunt. It’s nice to leave my readers with a warm fuzzy for their day. But this is truth. Not just for me, but for so many of us. We’re out here just keeping on. I just want you to take a minute to see us.

advocacy · parenting · special needs parenting

7 Big Truths About Special Needs Parents

Every week or so my messenger app dings with a message from someone reaching out. Often it’s a question; someone looking for input or encouragement, asking advice or giving any of the above. Sometimes it’s a local friend, often strangers find me via Google or an article and seek me out.

No matter who it is or what the reasoning, I welcome it.

I’ve noticed a few things as well. Though I’m reluctant to generalize, there are some threads common to many of these families.

  1. We’re dedicated. Whether it’s helping a child with ADHD or dyslexia succeed in a general classroom, finding a niche for a child with Asperger’s (yes, I know it’s technically not called that anymore) who is gifted, making plans for a child with a complex medical diagnosis or finding the right fit for someone with a developmental disability; families are bound and determined to do right by their kids.
  2. The resources aren’t readily available. This many years after IDEA and ABLE, it’s still hard to find and create resources for people who need any services or aids outside the norm.
  3. We’re tired. We struggle to find child care or respite, we spend untold hours driving to and attending appointments and meetings, we often are years or even decades behind on sleep, and we’re often trying to brainstorm, troubleshoot and solve behaviors.
  4. We’re broke. Between copays, deductibles, and gas, our money flies out of the bank account with extraordinary speed, and it’s not from being irresponsible. In fact we often feel guilty for small indulgences that many people take for granted because we know that the $2 we dropped on coffee is $2 less we can pay on bills.
  5. Despite all that we’re usually grateful. We realize that the services we can access for our kids are unprecidented, and though we struggle to make it all work, we do so gladly!
  6. We’re an unparalleled network. We find each other, we support each other, we advocate together and encourage each other. It’s a worldwide commune where people gladly share anything they have, eager to help one another out.
  7. We have a vision. It starts with our desire to make the world a better place for our children, and a recognition that our children make the world a better place. And we’ll go to the end of the world to bring it to fruition.

What would you add?

advocacy · parenting · special needs parenting

Why Do I Post So Many Pictures of My Kids?

Many bloggers take great care to avoid showing their children's faces, to keep a modicum of privacy for their families. They make up blog names for their kids and keep the family's identity anonymous. I get that, the Internet is far from safe, people steal photos of children and use them for rotten purposes. It seems that it's foolish to churn out photo after photo of my precious brood.

But I do.

It's because I want you to see them, to really see my kids.

I want you to get used to their features; those almond shaped eyes and small mid face that are the hallmarks of Down syndrome.

I want you to see their humanity, their preciousness, and to recognize them as the multifaceted, complex people that they are.

Alex was stared at yesterday. Blatantly, unavoidably stared at for several minutes yesterday. I'm sure it's because he wears his diagnosis on his sweet face. Anyone who might not be familiar or comfortable with Down syndrome will see his differences and not be able to stop examining him in order to perhaps put a finger on just what is different about him.

I want a world where every single person can look at someone with a disability and see the human being, not the difference.

By my sharing of photographs and our daily ups and downs, I hope to give insight that will facilitate that. I want people to understand that my children are as adorable and adored as any other child, and also to realize that there are differences and challenges; both for them and for us as parents and caregivers.

This is all my bodacious effort to make the world a place where they are accepted.

How can I do that if you never see their faces?

I know that some will disagree, and I'm okay with that. In fact I'll gladly listen to any dissenting voice. I've never claimed to have all the answers. I'm just doing everything in my power to make the world a safe, accepting, and welcoming place for my children.

Something many parents get to take for granted.

advocacy · parenting · special needs parenting

Rare Disease Day Letter, February 28, 2017

In 2006 & 2007 I spent endless hours Googling, as only a terrified mom can. 

My son had an enormous, bloated belly and emacieated arms and legs. I knew to the core of my being that he was terribly sick.   But our pediatrician, whom we had seen for years and came highly recommended by my physician family member and whose praises I heard sung by local pediatric specialists, kept nonchalantly calling him “just constipated”.  

If there was a way to convey my message, I did it, I even weighed and photographed his bowel movement, which only came every 10 days or do. She just increased his dose of Miralax. 

As a child with Down syndrome Ben was at risk for several types of congenital gastrointestinal diseases, but the one test that his pediatrician ordered came back inconclusive. 

I don’t know why it took me so long to go around her, I certainly wouldn’t take that long today, but I finally asked to just see the GI doctor. By that time my 15 month old was wasting away at barely 15 pounds, he was listless and had long since stopped reaching milestones. 

The GI office was scheduling months out, but had a cancellation with a nurse practitioner, I snatched it up like a drowning woman would grasp at a lifeline. 

I was terrified that she, too, would fail to see the dire condition of my son, but she hustled on our behalf. She gave him a Failure to Thrive diagnosis and marked his chart as urgent. She ordered a slew of tests, and conferred with the practice chief to make sure she didn’t miss a thing. 

Within a few weeks Ben was diagnosed with Hirschsprung’s disease, and had lifesaving surgery performed.

Within the same year he got a second rare diagnosis, Cyclical Vomiting Syndrome

In the 9 years that have transpired since, he has had 2 more surgeries and 2 out of state referrals for care with super-specialized doctors who manage care for a small subset of children with similar diagnoses. We have made gains on his care, but his quality of life is impacted daily by these diseases, including an hour long bowel flush through a stoma in his belly button which is done daily because Ben is completely unable to control his bowels. 

I can’t help but wonder if his life would be better if his a Hirschsprung’s was diagnosed within 48 hours of birth, which is the standard of care, but his doctors saw a constipated child with Down syndrome, rather than a child with a Rare Disease. 

I ask only that you join me in awareness, and if you are so inclined, click this link and share it to generate a donation.

There are many rare diseases, so many that up to 10% of the population has one. Since the people with the individual diseases are few and far between, we have banded together to advocate for ourselves and each other. We are stronger together!

advocacy · politics

Have We All Had Enough of Nasty Words?

What names have you been called since June 2016?  A Wingnut?  A Libtard?

What names have you called others?  

In some cases we take the names we’re called and embrace them:

And sometimes they just hurt.

In a recent conversation it became evident that name calling has become so bad that when I identified myself as a liberal, the person accused me of using of using names like bigot, sexist, racist and others toward all conservatives. He just assumed that I was against him because he’s been called names by people like me so many times. 

We ended up having a pretty decent conversation that ended with a better understanding of each other and hopefully a lesson that can be applied more broadly.

But it doesn’t always happen that way.

Name calling interferes with understanding and empathy. If I want someone to hear my side of the story, I’m doing myself a disservice if I use name-calling in my tactic.

A quote that I dearly love and use frequently in my own life and in my writing is perfect here.

Don’t Take Anything Personally. Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won’t be the victim of needless suffering.
~Don Miguel Ruiz, The Four Agreements

And then the quote within the quote:

What others say and do is a projection of their own reality…

What I say and do is a projection of my reality.

How do I want to project my reality?  Do I want people to see a person who derides the POTUS and all who voted for him?  A bitter person who paints all those who disagree with me with a broad stroke?  Or do I want to remain open to conversation and understanding with those who don’t share my opinions?  If my desire is the latter (and it is), then if I choose to use slurs or insults, I have undermined my own goals and desires.

There is a simmering resentment bubbling up and nearing a full, rolling boil, and if we let it boil over, or contribute to the boiling over, then we must understand that not just the other side, but our own side also will be burned when the pot boils over. 

I don’t stand clean in this area. I shared a quote suggesting that a subset of Trump supporters were “hypocrites”. I didn’t realize how much so before I posted it, but the use of the term “hypocrite” really chaffed some hides, and rightly so. To those who were chaffed by my choice of words, I apologize.

But some stances and actions are hypocritical or bigoted or sexist, and those do need to be called out. So must we remain silent when we witness wrong actions and words?  Absolutely not!

Might I suggest applying the principle “people first language”?

People-first language is a type of linguistic prescription in English. It aims to avoid perceived and subconscious dehumanization when discussing people with disabilities and is sometimes referred to as a type of disability etiquette.


People first language is important to me as a parent of children with Down syndrome. It places emphasis on a person as a human being who has certain characteristics. Rather than a “Downs kid”, I have kids with Down syndrome (or Downs). There’s more to my boys than Down syndrome, it’s only one of many descriptors that can be applied to them.

Using that principle, rather that calling someone a bigot, point out a bigoted statement. Rather than referring to someone as a Libtard, point out the discrepancies in their reasoning and why you disagree.

And furthermore, our President is not a Cheeto, a Drumpf, the Orange One, or anything else. He is the POTUS, and no matter how much you dislike him, please preserve your own dignity by calling him by his name, by his title, or even just “45”.  If you do not have the composure to refrain from slurring the president, then maybe you should do what your mama always said and say nothing at all.

While I am “only” 43 and haven’t lived as much history as many of my friends, I have never experienced the deep divisions and animosity of our current political climate. I’m not the most patriotic person in the world, but at the end of the day, this country is all I’ve ever known. I want it to remain intact and stable, and frankly I want to be able to enjoy a meal with all of my loved ones, who voted in many different ways, without tensions interfering.

As I hop down off my soapbox, I’ll share one last thought. In my family I’m the one who leapt across the aisle. Many of my loved ones have very different political views from my own. I cannot abide the thought of my parents or siblings being painted as racist, sexist or anything else because of their political affiliation, because they are nothing of the sort.  I believe beyond a shadow of a doubt that our hearts are desiring of the same things and grieve the same things, but that we see different solutions. We have common ground and divergence and trust each other to both be following our conscience and Christ himself to the best of our human abilities.