Down syndrome · special needs parenting

A Heartfelt Letter To The Neonatologist Who Told Us Our Son Has Down Syndrome

Dear Doctor,

I don’t remember your name, or even your face. The one and only time we met was one hell of a night. I doubt you remember us; it’s been 17 years.

We had nearly lost our baby and were in the midst of an emergency C-section required for fetal distress. Our baby had been resuscitated, and once stable, you brought him to us. I don’t know how much you knew about what had transpired, but I doubt it was your first experience with such a delicate situation.

I was eager to see my baby, a boy, and you showed him to me, introducing us for our first face-to-face meeting. You showed me that he was breathing well, even though he still needed an oxygen mask, and you showed us his sweet fingers and toes to count. I know you needed to whisk him away to give him further care, but the extra moments you gave us were so sweet. You then pointed to his eyes, his small head, his ears, and you told us how sweet those features were. You suggested, ever so gently, that those features looked to you like he could have Down syndrome, and that you would like to order tests. You explained that it would take a week to find out for sure, and told us you wished that wasn’t so, because waiting is so hard. You let us kiss him again, and told us what a wonderful, miraculous baby he was before rushing off with him.

I didn’t know it at the time, but what you did was unusual. You blessed us with your demeanor and words. You reassured us that our baby would be okay, and that he was entirely precious, no matter what the test results showed. You gently ushered us into a whole new world, and you did it perfectly. Thank you for your words, and thank you for your support.
Alex does have Down syndrome. The events of that night made it easier for us to wrap our minds around that. Having nearly lost our baby, seeing him alive with Down syndrome seemed like an easy reality to adjust to. But your kindness, your introduction of him to us as a baby first, set us up for acceptance. I wish I could see you one more time and tell you to your face how blessed we were to have you there with us that night. I hope that somehow you know.

special needs parenting · The Year of Turning Eighteen series

The Year of Turning Eighteen (part 1)

Alex with his brand new braces

Next week Alex turns 17. In preparation, we have signed onto the legal plan with Mike’s employer, and are making big plans.

Why all the hullabaloo?

Because when a person turns 18, they are legally an adult and responsible for all of their own legal decisions. That includes financial, medical, educational, and everything else. When that person has an intellectual disability, the ability to make those decisions is different, meaning that we need to determine if and what type of a a safety net should be in place.

Alex can read at about a fourth grade level. He can do elementary math and use a calculator. His emotional development is also at an elementary stage, meaning that his impulse control, long-term planning, and ability to make decisions about housing, medical needs and even grocery shopping is about that of an average fourth grader. In Michigan he can attend school until he is 26-years-old, though we are not sure if he will attend for that long, he is still nowhere near high school graduation. We still have great opportunity to maximize all of those skills in school. Realistically, he will probably always need guidance for things like informed medical consent and legal decisions. To give a glimpse of what this looks like, Alex recently got braces. His orthodontist explained the process thoroughly, and we reinforced the explanations. When trying to eat dinner the first night with braces, Alex’s teeth were too painful to chew. His solution to the problem was to remove the braces. He knew that the orthodontist would have to do that, but he wanted to return first thing the next morning and be done with the whole ordeal. If he had legal decision making capacity and transportation, I have no doubt that he would have been on the doorstep of the orthodontist well before the office opened the next morning. While I don’t blame him and we all have those feelings, it’s also important to keep Alex safe from his immature decision making process.

Then there’s the obvious issue that he cannot drive.

Thus, before he turns 18, in 372 days, we must have a safety net in place. That safety net is in the form of either Power of Attorney or guardianship. We presently lean towards Power of Attorney for Alex, which gives him greater control and autonomy to him, but the decision is not yet final.

The first step is to get his full educational evaluation completed, which is in process. From there we contact an attorney who participates with our legal benefits and get guidance on the best way to move forward for all of us.

My hope is that by documenting our process we can help other families navigate, so this is where it begins.

ABA therapy · autism · special needs parenting

So This is In-Home ABA

My first disclaimer that we have an older child with moderate autism co-occurring with Down syndrome and complex medical conditions. My second disclaimer is to look for the links. I don’t get paid for any of them or anything, I’m just trying to help you out if you don’t know the terminology. This post is part of a series about what to expect with in-home ABA.

We chose in-home ABA (Applied Behavior Analysis) for a variety of reasons. The first is Ben’s age. At 13 there just aren’t many options, especially when you live in a rural area. We have two ABA options and both are in-home. The other advantages of in-home therapy are that we can work on family relationships which have suffered, and tackle the concerns that arise in Ben’s normal environment. The cons are that with up to 25 hours/week of therapy, we have an ABA tech in our space much of the time Ben is home. I haven’t mentioned it lately, but I’m introverted to the point of reclusive, with a large side of awkward.

Therapy started with a process called pairing. Ben’s ABA tech (she’s fabulous!) is a woman just a few years younger than me, which I think is a huge advantage. She spent a couple of weeks developing a rapport with Ben and getting familiar with our family and routine. I used this time to work on a rapport with her as well. I’ve said it a million times and I’ll say it a million more. As the mother of children with developmental and medical needs, I am a professional parent. I see myself as 51% of any professional team that works with my boys, and as such, I conduct myself according to reasonable professional standards as far as communication, demeanor, and overall way of functioning. Though I don’t hold to it for the entirety of a professional relationship which takes place in the home, for at least the first visit I wear business casual attire as well.

The ABA technician is responsible for the nuts and bolts of day to day therapy, and the BCBA (Board Certified Behavior Analyst) is the guru who writes programs to address the specific behaviors of concern, and analyzes the outcomes and continuously tweaks the program. They spend a certain percentage of the therapy time with the ABA tech and recipient of the therapy and communicate with the recipient, family, and tech regarding all things related to the therapy. The success of the process depends upon the functioning of this team, which brings me right on back to my professional parent point above. Since I want this to work, I consider it my job and view myself as just as essential as the rest of the team.

After the period of pairing, demands ramp up, and so does the behavior, but there’s a plan for that.

We have programs in place for Ben to learn daily tasks like put on his own shirt, ask for items using more than one word, and wait (hallelujah on that one!). There’s a lot of timing. Timing of non-compliance, timing “waits”, and a visual timer to let him know when he needs to move on to the next activity. In fact, visuals are a big part of this. As someone who is predominantly auditory in functioning, the visuals are something I have never been great at incorporating on my own, but are so valuable for Ben, so this is a huge bonus.

We use a simple first/then board with most of Ben’s normal daily activities as simple thumbnail icons.

Used with the timer, this should help Ben navigate transitions, which can get pretty rocky.

Coming soon we’ll have a simple visual calendar for Ben to make the flow of his day more predictable.

Though it’s still early in the game, Ben is getting more demands placed on him by the technician, and that means lots of noise, non-compliance, and mini-meltdowns. (I think our tech thinks they’re actual meltdowns, I’ve warned her, but seeing is believing).

Change is uncomfortable for us all, and the discomfort I have with this gives me a sense of camaraderie with Ben. We’re all growing here, and since we’re off to a late start, it’s a bit jarring. We’re holding on tight for the ride, as usual. At least we have that part mastered.

 

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.

environment · homesteading · stewardship

Save Money and The Planet Without Freezing Your Butt Off

I’m over half Dutch. My maiden name is Dykstra. Having grown up in a Dutch family in a Dutch community in Michigan, I was steeped in the core Dutch value of frugality from the moment I took my first breath.

Frugality gets a bad rap, but should not be confused with the miserly disposition that can accompany it. Frugality squeezes the most out of what we have. When done with a certain mindset it can be a creative, enjoyable lifestyle that imbues generosity, rather than stinginess. My parents embraced and encouraged stewardship along with their natural knack for stretching their dollars, so it’s natural for me to do many things along those same lines. If I can save natural resources and money at the same time, doing so is a no-brainer!

Here are my favorite tips for staying warm without breaking the bank:

  • Open the oven after baking to let the heat escape. (Bonus there is food involved!)
  • Skip the dry cycle on the dishwasher and let the hot dishes air dry with the door open and allow the heat and steam to escape.
  • Instead of using the vent fan in the bathroom, let the hot air out of the room after a shower.
  • Close off heat vents and shut doors of unused rooms.
  • Use fireplaces or space heaters to heat living areas.
  • Use heating pads or electric blankets to warm up if you’re home alone, rather than heating the house.
  • Cuddle your pets (their body temperature is warmer than ours and it’s good for your health!).
  • Make a tent over a heat vent and let the warm air swirl around you (Little House on the Prairie nightgowns are great for this!) We used to do this while eating breakfast on the weekends, so there’s serious nostalgia involved for me.
  • Use layers and blankets.
  • When the sun is out open the shades and sit in it like a cat, and when it’s hidden, close them against drafts.
  • Drink warm beverages.
  • Keep a rechargeable hand warmer in your pocket.
  • Shake your booty and increase your body temperature.

While I readily admit that I’m a post-menopausal warm-body, so when I’m home alone I keep the house frigid and don’t even mind, as a mom, I strive to keep everyone comfy, and often use multiple tricks from my bag at once. If you have great tips, be sure to add them in the comments!

autism · cancer · Down syndrome · parenting · special needs parenting

Always Waiting For the Other Shoe To Drop

We are on a bit of a roll over here.

We have a steady respite person. This week I got an application for a self-determination employee, someone who will take Ben out and work on community living skills with him, and Ben’s caseworker has things lined up for ABA therapy to start soon.

Not only that, but his health seems to be fairly stable. we have the steady stream of appointments lined up to maintain stasis, but his sinuses are relatively clear this year, and after several months of a MRSA infection, that is clear too. We’re barreling toward 3 years since his last hospitalization, a personal best.

His new psychiatrist is using a combination of medications and supplements which seems to be effective, meaning no violent outbursts in the last two weeks (a big deal here). By every measure, we are making progress, loose ends that I have pursued for years are coming together. We are moving past many of the dead ends and setbacks we have slammed into through again and again.

Only an itty bitty piece of me indulges in celebration. A morsel that is quarantined away, so as not to grow or infect any other part of me. Carefully encapsulated, observed and disciplined, so as not to risk any loss of control. I’m reluctant to even mention any measure of success.

Instead, I steep myself in caution. I mentally list all the things that might go awry, cataloging them repeatedly in chronological, alphabetical, and decreasing and increasing orders of severity. With an epilogue full of asterisks in case of some unforeseen and unforeseeable event.

Because we live in the land of the unforeseeable.

In complex parenting, a hospital discharge can mean a return with a worse diagnosis later.

In complex parenting, medications come with reactions and side effects that strike at any moment.

In complex parenting, a routine appointment too often turns dreadful.

In complex parenting, we brace for the worst-case scenario, not out of fear, but out of habit.

In complex parenting, we don’t rest on success or achievement, because there’s always more to accomplish. Because the bottom can fall out at any time.

We live precariously balanced. We unravel knots while tying up others. We tiptoe around, not on eggshells but on shards of blown glass, knowing that any misstep leads not only to breakage but to harm. We guard our hearts against joy and celebration, no matter how hard-earned, because we’re braced for a crash.

It’s a superstitious, ritualistic juju dance of not jinxing ourselves and warding off the bad by keeping our fingers crossed and a loose grip on the good.

Brené Brown called it Foreboding Joy, and I reaffirm my departure from her on this. If you get excited when I share my news, I won’t join you. When you tell me you’re praying for it, I won’t bother telling you I don’t exactly trust God to keep us from the fire, rescue us from the fire, or keep the fire from consuming us anymore because experience hasn’t borne that out.

I’m keeping my armor fastened, with a crest of foreboding joy on my breast, and charging forward as always. I don’t know if it’s smart, necessary, or maybe even slowing me down, but without it, I stand naked and terrified.

 

advocacy · autism · Down syndrome · special needs parenting · Uncategorized

At The Risk of Sounding Like a Jerk. . .

Can I confess some mixed feelings?

A little backstory: Alex brought home a flyer for the Night to Shine”, an event created by the Tim Tebow foundation to provide a formal dance night for people with disabilities.

It’s probably no surprise if you have read my previous posts to find out that I’m prone to over thinking, and this is a prime example of that. But pardon me for working it out here with you, especially if I end up with pie on my face.

Of course, Alex wants to go to the Night To Shine. An evening out with his friends to get dressed up and dance is total fun for him.

I don’t want to not let him go. I mean, what parent wants to deny a child a fun time. And if you know anything about Alex, when he’s having fun it’s beautiful and contagious.

Yet, I’m struggling to get past the yucky feel of the thing.

By yucky I mean it feels like a Cinderella story where for one night everyone has fun playing pretend, and then when the clock strikes midnight the shoe falls off, the coach turns back into a pumpkin and everything goes back to how it was in the first place.

When the boys were younger we signed them up for a football event called Victory Day, where the participants took the field with a local high school football team and were handed the ball while the high school players gave academy award winning performances pretending to tackle the disabled person who eventually succeeds in running the touchdown. The whole thing was contrived, in a good natured way, but what rubbed me wrong and aged badly, was Ben’s touchdown run.

Ben doesn’t follow anybody’s playbook but his own, and rather than running a touchdown, Ben fancied himself a defensive tackle. What Ben wanted was to take down the ball carrier. Ben’s chance to play football with the bug guys became a comedy of errors, because Ben wasn’t about to run the ball, and instead, did his level best to get in a few good tackles. They ended up carrying Ben over the goal line in order to get him off the field with less than a full hour of time off the play clock. Long story short, the day left an aftertaste, one that leaves me wondering what the volunteer time, money and effort is really about.

I can’t fault the players for making every attempt to follow through on what they were supposed to do, but what, in retrospect, seems off is that the people the day was supposed to be for had no voice in how their one shot on the field went. They were given a ball and expected to do what was planned for them, rather than being offered a say in what to do.

Which leads me to wonder if when these things are planned, are there people with disabilities on the committees? On the foundation staff or board? Or is this something that typical functioning people are doing for people with disabilities?

Let’s walk this back. If you’re a woman, do you want all men creating and enacting their vision of what you want? If you’re an introvert do you want a committee of extroverts deciding what introverts want. It can go on and on with various people groups, but suffice it to say, every people group deserves representation when plans are made, rather than having plans made for them, and people with disabilities deserve that no less than any other group.

Looking into the Tim Tebow Foundation I am not easily able to ascertain if any board or staff members have disabilities, but I’m fixing to find out, as well as checking the local planning groups. Representation matters. Self-determination matters. It’s fine to serve, but even better to include and involve, while listening.

For now, I think Alex will attend, but not without reservations on my part. I’ve emailed the foundation and am eagerly awaiting a response on how involved people with disabilities are at the planning level. Stay tuned.