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.

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.

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

Welcome to Holland? Or Welcome To The Amazon…

 

There’s a popular poem about the experience of parenting a child with a disability called “Welcome to Holland“.  It was an apt description of how I felt when we found out and processed the fact that Alex has Down syndrome.  However, I find it lacking for the more significant disability Ben has, so here is my own analogy:

When you walk through the woods near your home, you’re exploring. It’s fun, interesting, and exciting. While doing such things I have come across snakes (the Eastern Hognose variety), raccoons, unknown dogs (one who attacked my dog and me) and occasionally people I don’t know. Doing that exposes me to more variety and slightly elevates my danger from that of staying at home.  It’s a good, wholesome, fun, enjoyable, and completely normal thing to do.

That’s what having a typical child has been like for me.

When I visited Arizona I went for a run on a public property near the home of my in laws. There were cacti all over the place, and I made mental notes that snakes that I might encounter would be of a venomous type, and that even such things as ants, which in Michigan are fairly benign, could cause me real grief.  It was a bit more nerve wracking, a bit more exciting, and overall a great experience.  I recognized that I was outside of my comfort zone, but it was within a reasonable proximity of normal, and it was more of a mindset change than anything else.

That has been my experience parenting a child with Down syndrome. We took normal and kicked it up a notch.

The territory we unknowingly entered with Ben is more akin to an equatorial jungle. The vegetation is so dense that making headway is arduous, slow, daunting and barely manageable. The variety of the flora and fauna is stunning.  And terrifying.  It’s crucial to remain focused and attentive every second, even sleep is a luxury during which a certain vigilance must be maintained.  Specialized equipment is necessary to survive. Dangers lurk on every branch, flying, crawling, swimming.  A brief break from watchfulness could land you in a life or death situation.  It’s incredible it’s not for the faint of heart; only small populations live there, and tourists are few and far between.

This is life parenting a child with complex medical, developmental and mental health needs. It’s life on the edge.

We’re a highly specialized bunch, it’s adapt or die here, and adapt we do.  We develop skills and equipment to manage our extreme environment, always looking for the next breakthrough. We’re capable and savvy, though a bit more fierce than most civilized populations.

In the welcome to Holland poem, the comparison is Italy to Holland, but if you were planning a trip to Italy, imagine how woefully unprepared you would be in the jungle.  Even for us, planning another trip to Arizona, would be completely lacking in equipment and skills for the actual journey we’re on.

That’s where this analogy differs from the Holland analogy.  This isn’t a trip that we’re fairly well prepared for, this is being dropped into a place where we don’t have the knowledge, skillset or equipment to survive, we have to ad lib the whole thing; our only skillset is improvisation and the will to survive.

The most implausible part of it all is that we actually succeed at it; by sheer determination, fueled by passion and love.

autism · Down syndrome · Uncategorized

Our Own Drummer 

You know time crawls on when you’re waiting for your song to start so dance alone to the beat of your heart.

~Fall Out Boy, Phoenix

Autism spectrum disorders are known to occur in individuals with Down, and statistics show that ASD is more common in Down syndrome than the general population. It’s hard to nail down, but a reasonable estimate, per the NDSS, of the incidence is 5-7% of the Down syndrome population having co-occurring ASD.  I would estimate that number to be on the low side.

Of those people with co-occurring disorders there’s a pretty clear description of the common presentation, which includes, but isn’t limited to; frequent stimming, little interest in social interaction, and often the individual is nonverbal.

Suffice it to say, after reading about Down syndrome and ASD, I didn’t have any indication that Ben had autism in addition to Down syndrome. In fact, you could have knocked me out with a feather when we got his diagnosis.  I got the book, “When Down Syndrome and Autism Intersect“, which further confused the matter by describing the standard presentation of DS/ASD, which was nothing like Ben.

Ben with his cars

 

It took me quite awhile to wrap my mind around the ASD diagnosis. In fact, it was at last year’s local Down Syndrome Association picnic that the reality hit home like a sledge hammer. Ben was disregulated and riding the meltdown train the whole time, and the difference between him and the rest of the people with Down syndrome at the gathering could not have been more obvious.

Ben is very social, in fact excessively so. What he lacks is reciprocity.  He’s far more characteristic of what used to be considered a PDD-NOS diagnosis.

Alas, Ben is an island. He doesn’t fit in the general Down syndrome community, nor does he fit in the DS/ASD community.

I certainly don’t know what it’s like parenting other children with co-occurring Down syndrome and ASD, but I do know that it’s awfully lonely parenting our little man. The resources are not designed for us, they don’t address our challenges.  Ben is who he is, and I love him in all of his quirky individuality, but man would I love to find a kiddo with a similar presentation. I could just imagine sitting down to coffee with his or her parents and comparing stories, watching their eyes light up as we all realize what we have in common.  We bypass the standard Down syndrome, ASD, and DS-ASD resources, because none of them address our situation.

For now we do alright on our own. Ben has his own drummer, and he sure is cute marching to the beat on his own.