marriage · parenting · special needs parenting

A Tribute To My Husband…

We are a case study of opposites attracting. He’s a headstrong doer, I’m a heart-strong be-er. He takes conflict with his daily coffee, whereas I will go to the end of the world to avoid hurt feelings. He’s decisive, I procrastinate. He talks on the phone and connects with people, I text and keep to myself.

Yet somehow it works. We’ve been married almost 23 years now, and though it took us awhile, we figured out a thing or two along the way. I have to say, we do all right.

When the neonatologist told us our son appeared to have Down syndrome, it was him who took the lead, accepting the diagnosis and plunging ahead. I might have floated adrift for quite some time, but Mike rallied immediately, then threw me a lifeline and reeled me in.

We often have tough decisions to make, and when I waffle he’s strong. When I procrastinate he pushes. When I get bogged down in my feelings, he’s pragmatic. When frustration gets the best of me, he’s diplomatic. When I demure, he asserts. When I feel, he thinks.

I’m pretty sure people envision me in the driver’s seat in our complex family, and I don’t think that’s wrong, but if I’m the driver, he’s the engine. One of us wouldn’t get anywhere without the other.

I don’t know how much I actually pause to appreciate my husband. Certainly not enough. In case I haven’t said it lately, I notice you. I appreciate you. I value you for who you are and for all you do. I can’t imagine living this life and parenting this crew without you right here with me for every little detail. In the midst of it, you make me a better me. You call me out when I’m off-base, you challenge me to improve myself, but you love me exactly where I am. I know you didn’t ask for this crazy life, but you have stepped into it and mastered it. I love you completely. And just in case I forgot to tell you, thank you. You are a treasure.

adoption · Down syndrome · special needs parenting

The Next Step in Pro-Life

This weekend marks the 45th anniversary of the landmark Roe v. Wade decision which legalized abortion nationally. I am not even going to attempt to discuss the law, rather, I’d like to examine the next step.

What happens after birth?

What happens when children are born with disabilities, and in an instant a parent becomes a caregiver?

What happens when a parent gets addicted to opioids or dies of an overdose?

What happens when parents hurt their children because of human frailty, or neglect, or substance abuse?

What happens when children have enormous medical challenges?

What about services and support for people living with mental illness?

And so much more.

Wouldn’t robust support of families caring for children with exceptional needs be pro-life? Would women be less likely to terminate a pregnancy with a child who has a prenatal diagnosis of disability if they knew that access to everything their child would need to thrive would be available and affordable?

Wouldn’t it be pro-life to fund research and resolution for opioid addition? And while we’re at it, there are record numbers of children in foster care at present, in large part related to opioid addition, being a foster parent is, in my humble opinion, the most stunningly beautiful example of pro-life imaginable.

Do you get what I’m saying here?

There are dozens of ways to embody a full-circle, lifelong pro-life stance without even bringing abortion into the conversation.

But it’s hard.

It’s easy to talk about changing a single law, and to carefully hand select politicians who have a certain box checked on their platform. But if that’s your stance, can you answer what should happen after the children are born?

Adoption.

But wait, is it right to separate a child from their ancestry for life? Biology is enormously important, and while infant adoption is sometimes necessary, far too often it’s a lifelong solution to a short term problem when better solutions for both the child and parents are available.

I don’t claim to have answers, in fact, it’s the questions that overwhelm me.

But as a person who has spent my adult life focused on the children who are already born, the ones with disabilities, the ones whose parents are addicted, the ones who have been orphaned, the ones with mental illness, the ones with so little support. I have come to believe that if everyone who made sure that they voted for the pro-life candidate took a step or two to care for the children once they’re born that it would transform everything. We have the ability and the obligation to fill in those vast gaps for the children who are already born.

introvert · special needs parenting

Has Social Media Changed The Meaning of The Word “Friend”?

I’ve always kept a tiny circle of friends. When I was younger I felt insecure about my relative unpopularity. It seems I’m somewhat of an acquired taste.

Add to that a family with complicated needs and working at home, and if I get out with a friend a few times a year I’m lucky.

If you look at my Facebook, though, it’s a whole different story. I have a hundred or so friends that I encountered through an adoption related discussion board about 12 years ago. I’ve actually met fewer than half of them, but I consider every one of them good friends, and some quite close.

Then I have a broad group of people who have some kind of connection to Down syndrome, special needs pare ting, or some type of disabilities with whom I’ve connected over the years. And, of course, childhood cancer connections.

Throw in people from high school and a few jobs, and my latest additions of fellow writers, and my list of Facebook friends belies my claim to be an introvert.

The funny thing is, with rare exception, I feel like I know these people well. In fact, when I have met the people with whom I’ve developed online friendships, the transition has been seamless.

Maybe this means that I spend too much time surfing social media, and I won’t argue that. I will say, though, that for the socially anxious introvert, the advent of socializing through my phone screen has been revolutionary.

Even before social media came along I demurred when invited to any gathering. If it is a large group or there’s alcohol involved, there’s not much chance of me attending a get together.

But now, especially through groups and private messaging, I am able to have meaningful discussions, connect with like minds, and enjoy a form of interaction that enriches my life without finding a non-existent babysitter or using up my energy on tedious small talk.

While many find social media a simple distraction or time killer, I suspect that many, like me, find a way to fill a void that had previously been insurmountable, and do so unapologetically.

Down syndrome · special needs parenting

You Just Had a Baby With Down Syndrome, What Now?

We opted not to have prenatal testing, so our son’s diagnosis of Down syndrome was first suggested by a neonatologist while my abdomen was still wide open on an operating table. I write this according to my own experience, and because it sure would’ve been nice to have it when I was recovering in the hospital and trying to understand what having a child with Down syndrome meant, both in the immediate future, and longer term.

Our son, Alex, was whisked away after only a brief introduction. He was born in distress and needed the support of the neonatal team in order to stabilize. By the time we got to see him again later that night he was on oxygen. This is common in newborns with Down syndrome, but it unnerved me. Learning to breathe takes a lot of energy for any newborn, and since people with Down syndrome are born with low muscle tone (hypotonia) breathing takes even more effort than average. The oxygen gave him a little boost until he became strong enough to get the hang of breathing on his own.

I spent my time in the recovery room wondering if my husband would still want to name our son after his grandfather and himself if he did actually have Down syndrome. I can smile about it now, knowing that there was no question about it, that we did make him a namesake and have never regretted it. But this is what went through my mind, and though it seems silly in hindsight, it was a legitimate fear at the time.

By the next morning a feeding tube had been placed in his nose, and a cardiologist had been called in to check his heart. This is all status quo as well. Over 50% of babies with Down syndrome are born with heart defects, and many go on to have open heart surgery. Alex had a small hole in the septum between the ventricles in his heart, but his did not require surgery. It closed on its own and after a year of appointments and echocardiograms he was given the all clear.

I was disappointed right off because I had breast fed my first child immediately after her birth and enjoyed nursing her for a full year. My son needed the benefits of breast milk even more, but because of his need for neonatal care, I wasn’t able to nurse him right away. I did start pumping immediately, and tried to get him to nurse. He was tired and floppy though, and just couldn’t latch. The lactation consultants at the hospital coached me along and helped ease my disappointment. Even though Alex couldn’t latch, the attempts to nurse gave us skin on skin bonding time, which is precious as well. Thankfully I had no problem producing milk, and before I knew it I had a stockpile of breast milk ready for him.

It took Alex about a week to get breathing and eating down pat so that we could bring him home. He had no medical complications other than the tiny hole in his heart, which gave him a big advantage. He was still in the hospital when we got the results of the genetic testing (called a karyotype) that gave him the official diagnosis of Down syndrome, but we knew before it even came that he did indeed have it.

Upon his discharge from the hospital, he got referred to Early Intervention services, and within a week an Occupational Therapist called to set up a meeting, which occurred right at home. Our OT was kind and professional, and a huge help in learning about things like hypotonia and gave us tips on helping Alex become strong and capable. She continued to see him until he turned three and started school and she became a family friend.

The Early Intervention team eventually included a teacher and speech therapist (SLP). Some kids also see a physical therapist, but that was not the case for Alex.

I eventually gave up on nursing him, and focused on stockpiling enough breast milk to feed Alex until he was about 6 months old. I was pretty cranky about pumping, which took a half hour, and feeding Alex took about the same amount of time, and we fed and pumped every 2.5 hours around the clock, doctor’s orders. I felt like I had no time for anything, and had just had it, when my husband suggested trying to nurse Alex just one more time. It had been a couple of weeks since I’d tried, and I did it out of pure spite. How dare he, the one with useless nipples, tell me I should try to get our son to latch. I might have even told him it would be about as useful as him getting Alex to latch. But I did try, and Alex did latch. He was 6 weeks old, and from that day forward he nursed exclusively. This experience is more of an exception than the rule, but I think it warrants inclusion in the story, because it taught me to never underestimate the power of trying just one more time.

Alex had the very typical experience of having sinus and ear infections, and went through about a dozen sets of ear tubes as well as tonsils and adenoid removal, but has been otherwise healthy.

I fell into a mindset when he was tiny that my child with Down syndrome would be high functioning, which would make everything okay. For a couple of years I clung to this notion, before realizing that my son was okay no matter what. He was and is precious and worthy, no matter what his IQ, which is just about average for a person with Down syndrome.

We’ve learned a lot in the almost 16 years since, but most importantly that Alex is a good human being. His bonus chromosome doesn’t make him an angel, more precious or wonderful, and it doesn’t make him less than anyone else. He is who he is, and that is a witty, goofy teenage boy with more than a little attitude and a whole lot of fun.

cancer · family · grief · parenting · special needs parenting

The Price of Deeper Thoughts

It was on the wall in my mother’s bedroom, a poem written by her grandmother. I loved it as a child, even though I possessed only a superficial understanding of it at the time.

My great-grandmother was a gardener and a writer; I’d like to think we’d get along famously, as kindred spirits. I wonder if she had any idea what the words she put down on paper those years ago would mean to me.

The hot house flowers are beauties,

They have grown without a pain.

Somehow I’d like to set them out

And let them feel the rain.

With just a dash of wind in it,

Though t’would break a leaf or two.

I know they’d smell much sweeter

If they felt a Summer’s dew.

My daughter is a darling,

And of culture has her share,

But I hope some day to see her

Grieved enough to she’d a tear

For something she can never help

No matter how she tries.

T’would steal some joy, but deeper thoughts

Would peep from out her eyes.

I never got a chance to raise a hot house flower. I couldn’t have sheltered my children, because the storm came right into their home.

And when the winds raged and the storms came again and again, my hope against hope was in my great-grandmother’s words. That my one and only truly typical child would some day have those deeper thoughts peep from out her eyes. That building her strength in the storm would bring resilience and splendor that cannot be gained in any other fashion.

And I pushed back the fear that the torrent would destroy her.

She has had more than her share of joy stolen, but she is reaping the deeper thoughts. They aren’t always pleasant, and sometimes downright frightening, but they’re hard earned and stunning to behold.

parenting · special needs parenting

What a Load of Should

“What are you doing for you?” It was Ben’s caseworker checking in.

I cried.

I was ashamed.

I didn’t have an answer. I know I should be taking care of myself, but…it just seems like one more item on an overwhelming to-do list.

Sometimes, lately at least, taking care of myself feels like a burden.

It means something else doesn’t get done.

It means that the piece of me that I had earmarked for someone or something else has to be set aside.

It means one more thing to squeeze into my day.

It means guilt because I have put myself aside.

Can I win?

If I do this instead of that, am I really better off?

….

I have long advocated for self-care, but truth be told, self-care is the first thing to fly out the window when stuff gets chaotic…and chaotic happens a lot around here.

Instead of doing something for myself I stuff a couple of cookies in my face.

Instead of doing something for myself I sit on the toilet for an extra 57 seconds to scan my phone.

Instead of bothering to try, and just get interrupted, I skip doing something just for me for days at a time. Sometimes weeks.

….

Funny, it didn’t bother me until she mentioned it.

So

I spread this load of should all over the place, and that makes everything, and I do mean everything worse.

….

But maybe I can back that train up.

If I can’t squeeze in something to do for myself, can I manage some self compassion?

Kristen Neff (I haven’t read her book, but she defined self-compassion, which absolutely deserves a shout-out!) identified 3 parts of self-compassion; self-kindness, common humanity, and mindfulness.

In other words, do unto yourself as you would do to others…

Whoa…

If I look at my situation through a lens of self-compassion, my shoulds magically clean themselves up.

The guilt I felt over my failure to make time for myself abates a bit. The burden of trying to be all things to all people lightens when viewed in light of my humanity, with some self-kindness and a dash of mindfulness.

If a friend of mine spilled her guts and they looked about like mine do right now, wouldn’t I tell her she’s enough? That it’s okay to put herself aside, as long as it isn’t for too long? I’d probably suggest that she seize any opportunity that arose to relax and enjoy some quiet, but until then… I would assure her that she’s going to be okay.

Because she will.

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?