parenting · special needs parenting

My Life Feels Like a Test I Didn’t Study For

A friend posted those words yesterday and I tried them on to find a perfect fit.

Remember those swimming tests you had to do to get the special armband at summer camp, you know, the one that meant you could swim wherever you want?  Those tests terrified me.

I had what could (perhaps slightly dramatically) be called a near drowning as a toddler. It’s one of my earliest memories, being under the water at my aunt and uncle’s in-ground pool on the nation’s bicentennial. I didn’t lose consciousness or anything, and my dad scooped me out relatively unscathed, except for a lifelong fear of deep water that kept me from completing swimming lessons when I was too terrified to jump into the deep end of the pool.

Regardless of my lack of swimming instruction coupled with the ability to sink to the bottom of the pool and remain there with zero effort which has left me a remedial swimmer well into adulthood, my fear of missing out demanded that I not be left in the shallow area of the lake at camp. So, by sheer force of determination, I took (and passed) the swimming tests at summer camp every year.  I always started out convinced I would drown, but somehow managed to keep my chin just above the water line for the full time mandated to get my armband of freedom.

And now that’s how I live life every day.

When we got married and started having kids I had no notion that anything other than 2.3 typical children would be our end result.  I didn’t realize how intimately acquainted with terms like “translocation 21:21” or “ganglion cells” or “bone anchored hearing aid” I would become. Or that it would be a sink or swim style test that I had no preparation for on an almost daily basis.

But here we are, and today I am reminding myself that I haven’t drown yet.

The test is different every day. Often I pass like it’s no biggie. There are times, though, when I need a lifeguard to throw me a floatation device, and there are days when I have to grab the dock and climb out of the water because my nose is barely clearing the surface. But most days I pass the test.  Those days when it’s a near miss, they blow my confidence, but generally leave me intact if not unscathed, though I never quite get past the fear of drowning.

Life feels like a test I didn’t study for, but I’m learning that I pass it almost every time, even if it’s by the skin of my teeth, and even on the days I don’t pass, I survive to try another day. And I think I’m learning to be okay with it.

advocacy · special needs parenting

Is Modern Medicine a Luxury?

Welp, here it goes. I can’t be silent. I reviewed the Senate Healthcare Bill, and it affects my son.  I don’t know if my blogging does a darn thing, but I believe I’m obligated to advocate for my child. As such, doing what I can to ensure that people are aware of the ramifications of this bill and asking those who care to make their voices heard, is the least I can do. 

For the sake of brevity, I will keep this to the two factors which have the greatest impact on my child.  The photos below were taken from an NPR summary of the bill. 


Many people think that Medicaid is a hand out to able bodied people who choose not to work.  However, around 90% of Medicaid dollars go to the elderly, disabled or working people whose income falls below the threshold in their state. Therefore, reduced funding to the program hits heaviest on the most vulnerable populations. As adults, both of my sons will rely on Medicaid for their medical coverage.  It’s not exactly clear what these cuts will mean to them, and perhaps that’s the most worrisome part of this. Alex might be just fine if he stays healthy, but Benjamin’s health needs are lifelong. If he cannot stay on our healthcare plan, and Medicaid is cut, what would the options be?  Nothing here is clear, and for families like ours it’s terrifying. 


This part is even more harrowing. In addition to his developmental and medical needs, Ben has serious mental health needs.   He sees a psychiatrist, uses psychiatric medicine, and needs autism therapy, which is a mental health benefit. Without these in place, his wellbeing is in jeopardy. I cannot overstate the seriousness of this situation. As it is, resources for people with developmental, medical and psychiatric needs are sparse, if funding is cut, it would be nothing short of devastating for Ben and our family. 

But we aren’t the only ones. In fact, we’re pretty fortunate so far. Mike works for the state and has his choice of excellent healthcare plans, of which we have chosen the most thorough and economical coverage. Many are self employed without access to such benefits. For us, the cost of healthcare thus far has been a strain, but one that we can manage. For many, it’s already past management and only set to get worse, highlighted in this Washington Post article. 

Look at smiling 12-year-old Parker from Utah, who needs a feeding tube, an aspirator, a trach and loads of medication to survive. One drug costs $100,000 a year. For a while, his family relied on food that neighbors left on their doorstep because Parker’s medical bills were so high after their health insurance capped out.

I’ve followed Parker’s story for years now, and his family deserves better.  They’re working hard, being resourceful, and just want their son to live! 

Here’s the thing, we have spectacular medical science that’s evolving and growing daily. We are able to save lives that just a few years or decades ago were hopeless. It’s marvelous, simply marvelous. But it’s expensive, as would be expected, too expensive for any but the wealthiest citizens to afford. Do we reserve such marvels for those who can afford to buy it? Is modern medicine a luxury for the few?  Is it a commodity available to only those who have the cash reserves to pay for it?  

How do we decide who gets this care?  Do we deny children whose parents don’t have jobs with a hearty benefit package?  Or do we put caps on it and say we can only spend so many dollars to save a person’s life, and after that just shrug it off?  Or do we leave people with mental illness without access?  This is dangerously close to eugenics. I shudder to think that denying Medicaid coverage for mental illness is a tidy way of saying society shouldn’t be obligated to help them. 

Finally, I want to point out that it’s the “pro-life” party that is endorsing all of this, and I’m calling bullshit.  There is nothing life affirming or life-protecting about any of this.  This is prioritizing finances over people and it’s repugnant. If you suggest that charities or churches should fill in the gaps, please just get off that ridiculous notion. In eleven years of managing complex medical, developmental and psychiatric needs, we have tapped into private resources to a great extent, I’m quite savvy at finding and accessing them, and we have had a church with a congregational care employee who identifies and designates church resources for families in crisis. Between the two, the help has been incredibly helpful for certain things, but only a drop in the bucket compared to the day to day impact of copays, deductibles, time and miles. It’s simply not feasible for private organizations to offset such monumental costs. 

So I ask you, do you really think it’s okay for people to suffer and die when medical care is available, but not affordable?  


parenting · special needs parenting

Some Middle School Girls Made Me Cry Today 

Alex’s choir went to the state choral festival today. I met them there and observed their stellar performance. But I observed so much more. 

I drove Alex there myself for a variety of reasons best summed up by saying that life is complicated and that was the simplest solution. As such we were early, because I’m always early, so we sat together in the foyer awaiting the arrival of his choir. When they entered, Alex hesitated, but his dear friend Maddie was at the front of the group and when she saw him standing there a smile lit her whole being (and as a stunningly beautiful and dynamic young woman, Maddie’s smile was something to behold) then she beckoned for him to join her, he glanced at me for approval, which I granted, and jetted over to join her. She clasped his hand as they took off with the group for warmups. 

This has been standard since Alex joined the choir. Maddie had participated in the LINKS program in elementary school, and every time I see her she exudes warmth and friendship toward Alex.  I’ve seen it before, but I never quite get over my sentimentality about it. 

Then, after their performance, they filed into the seating area of the auditorium. Alex was a bit confused about which direction to head, and I watched him from afar with anxiety building. In familiar areas Alex is independent and confident, but in this new territory he appeared uncertain and hesitant. I constantly waffle about how much support to offer since independence is our ultimate goal for him, but from where I sat there was nothing I could do anyway. I watched, wondering if he’d get frustrated or upset, but before I could even begin to fuss, another young lady took his hand and escorted him in the right direction.  Again, when it was time to go, she glanced toward him and took his hand to escort him in the right direction. Though I recognized her, I don’t even know her name.


As I observed, I couldn’t control the tears. 

All parents carry some degree of concern ofr fear over relinquishing control of their children in the world, but that universal emotion is magnified by disability. Alex is almost 15, but he’s as innocent as a first grader. He’s going into high school but he reads at a second grade level. He has a young man’s body, but the spirit of a boy.   He’s on a path toward independence, but it’s more meandering than average.  

As he navigates his way to maturity and independence, there are gaps along the way. Those gaps are worrisome to us as his parents, but today I saw his peers recognize and step into those gaps, of their own volition. 

And today I am encouraged that his path, though littered with hazards, is also sprinkled with helpers. Helpers for whom I am at a loss for words to express the gladness they bring to this mom’s soul. 

And I am grateful to the parents who teach and model for their children acceptance and inclusiveness, because their children are changing the world. 

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. 

advocacy

Beautiful people with Down syndrome 

Today is 3-21. This day has been designated “World Down Syndrome Day”, because people with Down syndrome have 3 copies, instead of the typical 2 copies, of the 21st chromosome. 

How would one recognize this day?  For me, it’s all about showing people who aren’t acquainted with anyone with Down syndrome just how beautiful, wonderful and treasured they are with photos and comments. 


Elias is a favorite phototograpghy subject of his sister Alicia. He is always quick to smile and his smile could light a room!


Daniel recently became an uncle. He is sweet and gentle with his new niece, and so proud of his new role!


This was taken at the GR Public Museum. This is a portrait of Jenna, who from Day One has been on a first name basis with Joy.


Emery is a sweet, sassy, stubborn and most lovable 7 year old. My life has changed more in the last 7 years then I could ever imagine, and I wouldn’t trade it for ANYTHING. ❤



Ben lives life at turbo speed. He is fully present in every moment!


Alex loves holidays and dressing up. He wants to be a Conservation Officer like his dad, and he is the most sincere person I know. 

What a day to celebrate people with “a little something extra”!  Please join me in celebrating these beautiful lives. 

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. 

parenting · special needs parenting

My Child Can’t Tell Me What is Wrong and it Breaks My Heart

This weekend Ben obviously didn’t feel well. He would hold his stomach, hold his head, was cranky and all out miserable. 


As evening approached he flirted with an elevated temperature. Only 99ish, but with shivers; moaning and groaning with achiness. 

He vomited a couple of times, but it didn’t seem like the Norovirus going around, nor like a Cyclical Vomiting episode. 

So we watched and waited and wondered. 

After a restless night he awoke appearing somewhat better. My husband and I shrugged and exchanged confused looks. At least he was no longer miserable. 

Late in the morning showered him off and cleaned his ears, revealing our answer. Ben’s ear was freshly draining; it was infected, and the pressure and pain had been alleviated when the blockage opened up. 

Mystery solved. 

If only it was always that easy. 

This one has a happy ending, but all too often, our child cannot tell us what he feels; even with something as straightforward as an ear infection. One would think he could just point to his ear and say “owie”, but he never does. Instead we put on our detective caps and do our best to uncover the origin.  We ponder, brainstorm, scratch our heads and shake them too, but all too often we land right back on angst, do not pass go, do not collect $200, and do not guess the real problem. 

And my heart aches and breaks when I try to help and fumble my way through. And my heart breaks that it’s so hard to help. 

We have this child with health problems and an inability to convey his bodily messages, or possibly even interpret them himself. When I think of how impotent I feel in my attempts to help, I wonder what he thinks. He clearly feels rotten and we’re supposed to be helping, solving his problems for him; yet we fail time and again. 

It’s a constant guessing game, remembering past episodes and sorting through symptoms. With this one we had covered our bases with Ibuprofen and Zofran (a nausea drug), but we aren’t always that accurate. 

And Ben suffers without a plea.