Our journey toward of a brighter future for us and our son with Down Syndrome
Chris and his wife Linda, along with their son, Amadeus, currently reside in Finland. They visited our Denver playhouse back in the summer. They were able to share their story and experience with staff at our playhouse. Chris was able to share with us their incredible journey below.



Many of us dream of becoming parents. Many of us dream of what the future holds for our children, and how we can give them the absolute best start in life. Imagine, then, that six months into your parenthood, you get told straight to your face that there’s no future in society for your child—that they’re bound for a track that’s entirely separated from the rest of society, where they’ll never be able to live out their full potential. That set in motion a hurricane-category fury for me and my wife, which has led us on a quest to redefining our lives outside of our home country, Finland.
Hi, I’m Chris, Amadeus’ dad. My wife, Linda, and I have been invited to give you a special look into our non-US lives as parents to a child with Down syndrome. We hope to bring some perspectives and share our experiences and opinions on why organizations like GiGi’s Playhouse need to exist.

Living in Finland, we knew from the get-go that this was going to be a very different journey from everybody else’s family life that we knew of at the time. While my wife and I are Finnish citizens (well, me through adoption from Hong Kong), we’ve always been and thought differently, largely thanks to having had all our higher education and a significant part of our upbringing outside of Finland (namely, UK, US, The Netherlands and Brazil). Knowing we’ve never fit in, our plan was always to leave Finland at some point. This is why we decided already before our son was born that we’d do one parent, one language (Swedish with me and Finnish with his mother), that he’d go to an English-speaking daycare, and that we’d start learning ASL, so we could start signing with him the moment he was born.
Having never before had any connection with the Down syndrome community, we knew next to nothing about the practicalities of living with DS before we found out, prenatally, that Amadeus had been gifted with an extra chromosome 21. It was both scary and exciting at the same time, given that we’re not the type of people who shy away from those obscure adventures that many around us reject.
Our big boy is now two-and-a-half years old, and has been the greatest blessing in our lives. That said, it’s also been a very isolating experience, not because of Amadeus, but because of where we currently reside. Despite the many attempts by our government and healthcare system to make us regret our decision to have him, we continue fighting for all that he needs and should be getting. Think: time, effort, therapies, prompt medical care (children with DS are not eligible for private health insurance), integration and inclusion.
When Amadeus was just 6 months old, we were told by our pediatric neurologist—who ran the community clinic for children with DS—that our goal for integration and inclusion to the highest degree possible was “simply unrealistic, because the other kids will notice he is different.” She also questioned our decision to have three spoken languages, despite research evidence to the contrary, and our choice of ASL (“without Finnish sign language, he won’t be able to communicate with his friends”)—assuming that having a child with DS would make our future and our world smaller, not bigger. Much to their chagrin, we ignored the advice and worked relentlessly to get Amadeus into a “normal” daycare with English as the language of instruction – where he is the first child with DS to attend the daycare, and, after 18 months, is thriving as one of the most popular children.
After having Amadeus, we started to see what a future in Finland would entail for him. While most typical children start school at age 7, children with DS typically get pulled out of regular daycare at 5 for special education—but without the goal for inclusion and integration. Most children with DS remain in self-contained special education classroom until 15, typically in a special school. At 16, all young people have an obligation to stay in school, but young people with DS are not allowed to choose from the normal options of academic high school (similar to APs) and typical vocational schooling. Instead, we’d likely have to send Amadeus away to an institute of learning for people with disabilities—essentially a modern boarding school—to learn “life skills” (TELMA), potentially hundreds of miles away if there was no suitable program for him in our community. The non-inclusive “Finnish way” of educating people with DS carries a 98-99% likelihood of being excluded from “normal” employment, and therefore society, regardless of our son’s potential and talents. And there’s nothing we could do about it. After finding out about our disturbingly limited options for him, it was made abundantly clear that this is definitely not what we want for our son.
While we do have some peer support for families of kids with disabilities, such as Downiaiset (The Finnish Down Syndrome Association) and Jaatinen (Association for Families of Children with Disabilities in Helsinki), the structural limitations shift the focus from thriving, to making the most of a modern, but messy system. This stands in stark contrast to what we’ve experienced in some other places. Case in point: We recently traveled to Denver for a conference on my own disability (Charcot-Marie-Tooth disease), and at the same time, we had the chance to get to know GiGi’s playhouse. It was an eye-opener to learn about the incredible work that GiGi’s does, as we, ourselves, are (sadly) used to peer support merely being about finding ways to deal with a system ill-equipped for extraordinary children with special needs. The fact that an organization like GiGi’s not only advocates for the rights of people with disabilities, but also provides e.g. (one-on-one) tutoring and therapeutic-based programs means that people who might otherwise get marginalized instead have the opportunity to thrive.

This may come as surprise to some of you, given what you may have heard about this apparently happiest nation on Earth. The problem we face is ableism in a system where funding—allocated to optimizing the tax base—indirectly and directly limits priorities and attainment. Owing to heavy organizational bureaucracy, our peer support organizations can’t even really step in where the government falls short, nor has any real power to affect inclusion and rights. Therefore, we’re stuck with a government that (reluctantly) gives Amadeus 13.5 hours of speech-and-language therapy per year. He is also denied access to physiotherapy after age 2 and orthotic shoes/insoles, on the basis that if kids with DS can walk (even if they struggle with maintaining balance), there’s nothing further that can/needs to be done (i.e. no need to learn to climb stairs, run, kick a ball, etc.). Our national guidelines (Käypä hoito) for the medical care for people with DS were last updated in 2010 and have since been taken down.
Due to cultural norms, it’s frowned upon to stand out in any shape or form. This is referred to as the “Law of Jante”, which is a social “code of conduct” that exists also in other Nordic countries. However, accepting…nay, embracing a child with Down syndrome was the equivalent of a cardinal sin. Choosing to go down that path meant that we “chose” to end our lives as we knew it. Obviously, we know we’ve done nothing wrong, and that the problem lies in a society that prides itself on its homogeneity and outward appearance. This is evident in abortion statistics, where abortions in Finland (and the Nordics) have generally steadily decreased (Graph 1), while abortions related to DS have exceptionally only continued increasing (Graph 2), particularly over the last 20 years.
Graph 1: Abortions have decreased steadily, with the exception of Iceland and Sweden (source: https://thl.fi/en/statistics-and-data/statistics-by-topic/sexual-and-reproductive-health/abortions/induced-abortions-in-the-nordic-countries)

Graph 2: Abortions related to DS are only getting worse. Note, these kinds of statistics don’t show up in the normal reports about abortions that are released internationally, hence why I could only find it in one place in a news article in the Swedish-speaking Finnish news outlet, Svenska Yle, about the alarming rate of abortions related to DS (source: https://svenska.yle.fi/a/7-10062727).

The big wake-up call came shortly after Amadeus turned 1, when our choice to have him started affecting our professional lives. After returning to work following generous Finnish maternity leave, at a time typical for surgical residents in Helsinki, my wife continued to pump for our son due to his medical needs while working full-time (up to 80 h per week). The brand-new Level 1 trauma hospital—which had opened a month before her return to work—had no lactation facilities or even call rooms for residents in her field. My wife continued pumping on-the-go while charting, fully clothed, storing her milk in a cooler bag (not a communal refrigerator) even during 24h shifts while swapping out the ice packs. Not only was it implied that this was unprofessional, but my wife was also told that a hospital refrigerator was off limits; instead, she was told that she could purchase a refrigerator and bring it in.

My wife continued pumping until her fixed-term contract ended, some 1 year, 3 months before she was due to finish her residency training. It was clear that she was in a surgical culture where surgeons neither lactated after returning to work, nor had children with special needs, reflecting the cultural norm to terminate a pregnancy after a prenatal diagnosis of Down syndrome. In the same month, I also lost my job. Although the reason for me was company bankruptcy, I was told by my former boss—while we were expecting—that “if he were me, he’d reconsider, as it’s going to ruin my career.” Even as a man, I was being pressured into aborting Amadeus, because the cultural expectation is that you can’t have a child who is different while being a working professional (though we know this to be untrue).
The main challenge of restarting one’s professional life has been the lack of prompt medical care for our son, with our son’s daycare attendance at 36% over 18 months. This follows as a direct result of the Finnish medical system’s main failing: treating everybody the same without considering equity. While technologically advanced and focused on evidence-based medicine, it doesn’t seem to understand that investing in early intervention and prompt medical care causes less burden on society in the long run, when both parents and their kids with special needs can succeed because of the system, not in spite of it. Medically speaking, kids with DS are somehow apparently exactly like other kids and should be treated no differently (to the extent that Amadeus doesn’t even get what he’s legally entitled to), but when it comes to education, suddenly they’re not like other kids at all, and must be removed from an inclusive setting.
I wish I could say we conquered the system, but having had every possible obstacle thrown in our way to make sure we wouldn’t succeed, it highlights just how fearful the Finnish society is of anybody who stands out and tries to change the system (even for the better), as well as how ill-equipped the system is to handle people with special needs and (rare) disabilities. I know this well, since I also have a disability (Charcot-Marie-Tooth disease and Tourette syndrome). The fact that there’s no freedom to decide how you want to live your life and that you may have to sacrifice your values—and even your family—all for the sake of your career, means that, at least for us, this is anything but “the happiest country on Earth.”
It saddens us that we don’t get to decide what’s best for our family, but it has also emboldened us to leave everything behind and build something greater elsewhere. Our plans are still open, but as it stands now, we hope to make the US our forever home. While we know that that brings with it a whole new set of challenges (obviously no country is perfect), our highest priority is making sure Amadeus’ future isn’t a disability related pension at the age of 16, a high possibility he’ll end up in an assisted living far away from us with “friends who keep dying” (i.e. the elderly), and/or a special vocational track leading to a work center job—at 9 Euros per day—that’s entirely separated from all other vocations/employments.


No matter how many chromosomes your child is born with, as a parent, you’d be a fool to accept it when someone tells you your child can’t make a difference in this world. We whole-heartedly believe that Amadeus was born to do great things, and so, we’ve taken our parental rage and are channeling it toward finding a more hopeful place to grow roots. Amadeus is worth not giving up on, and we’re willing to make worthwhile sacrifices to make it happen.
Thank you for letting us share about our ongoing journey toward a brighter future, and we sincerely hope we have the chance to experience GiGi’s Playhouse again, meet all of you, as well as play a part in what makes it so great! Knowing what we know, this kind of work means the difference between merely being alive and living life to its fullest, and will therefore always have a special place in our hearts.

In the meantime, we hope you’ll follow our path to spreading awareness about disabilities and finding our happy place, over on our Instagram accounts @sonshine.amadeus and @this_abled_dad!
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