Axel Kussmann

@apkussma | contributor
Axel Kussmann is the father of two boys, the younger having an extra chromosome. You can read the adventures of the three of them (and of course, their mother) at http://meandthelightningkid.blogspot.com.
Community Voices

What I've Learned Is Important in Raising a Child with Down Syndrome

1: Don’t Wait For Readiness
Start early on any endeavour, they will need more time to master a skill, so give them more time. We applied this successfully with everything from toilet training to crawling and walking to second languages.

2: Don’t Listen To Experts
I hate painting with such a broad brush, but if we had listened to experts who told us what a child with #DownSyndrome isn’t capable of, I shudder to think how low functioning my son would be.

3: Never Say Die – No Retreat No Surrender
Never give up on a goal that will better your child’s life. They can learn just about anything – it takes time and patience, which makes it hard, but not impossible.

4: Never Say Never
Science and technology make a lot of things possible that were unthinkable in the past. Prior history is not a measure of the future as they say in investment circles.

5: Do Sports and Exercise
There is a reason the Special Olympics exist. Purely intellectual pursuits might not be a good fit for a child with #DownSyndrome (though never say never), so sports and exercise are a healthy outlet that will not only improve strength and co-ordination but there can also be neurological integration benefits that will pay off in academic or other mental scenarios (problem-solving, spatial planning).

6: Peer Modelling is Important
Having an older sibling to imitate has been a boon to our son. While the Special Olympics is good, we have always placed our boy in extra-curricular activities with typical children, usually of the same age.  In sports and life, we end up performing at a higher level when in a situation with higher-level players.

7: Fight For Inclusion
Getting access to the opportunities you want for your child in sports, education and art is a constant battle.  Some doors seem closed, some seem open (but aren’t completely open).  The world is inherently and systematically ableist and the system would prefer it if your child would just go away or not exist at all.  It’s exhausting, but if you remember you’re fighting a longtime campaign, hopefully, you can not let individual lost battles discourage you.

8: Live Life Out Loud
Even positive stereotypes (people with #DownSyndrome are always happy) ultimately have a negative effect.  We mostly post about his accomplishments, but the more we let people know about his life, the more people know about an individual with #DownSyndrome .  Stereotypes and ignorance are best fought by simply getting to know people – nowadays, it’s possible to ‘know’ someone you don’t even get to meet in person.

9: Toilet Train Early
There’s a wealth of #Programs (classes, camps, etc.) that can enrich a child’s life, but there are very few people who are willing to change a dirty diaper.  Points #1 and #4 were crucial in achieving this milestone.

10: Look For Ways to Make it Fun
Spot words from the week’s spelling list in reading or on signs on the road.  Incorporate the physio exercises they are to do into playtime.  The more you can embed the extra work you have to do into your day-to-day life, the more benefits from that work you will reap.

Ellen Stumbo

CDSS' Endangered Syndrome Campaign Has Down Syndrome Community Divided

A new advocacy campaign from the Canadian Down Syndrome Society (CDSS) has the Down syndrome community divided. The “Endangered Syndrome” campaign launched on Nov. 2 with a series of videos featuring four people with Down syndrome dressed as animals expressing their status as an “endangered species.” The CDSS is petitioning the International Union for the Conservation of Nature, the organization that oversees the global endangered species list, to add those with Down syndrome to its list. As part of its campaign, the CDSS started a social media petition asking people to share the following message on their social profiles: “Dear @IUCN, I believe that people with Down Syndrome are endangered and we need to take action. Which is why I’m signing the petition to get them on the Endangered List. See why at EndangeredSyndrome.com #EndangeredSyndrome.” With new advancements in prenatal testing, expectant parents are able to learn about a Down syndrome diagnosis before a baby is born. When a diagnosis is confirmed, termination is oftentimes presented as an option, leading parents, who may not know much about Down syndrome or fear the diagnosis, to end the pregnancy. The Charlotte Lozier Institute, a pro-life nonprofit, found that Down syndrome population decreased by 30 percent in 2015 due to selective abortion. Not all countries track birth defects in national registries along with prenatal diagnosis and termination rates, which makes it hard to determine the exact rate of termination. In August 2017, the Down syndrome community responded with outrage when a CBS news report covered Iceland’s pride that they had almost eradicated Down syndrome with an almost 100 percent termination rate. Besides addressing the Down syndrome pregnancy termination rate, CDSS’s campaign also discusses issues of unemployment and how people with Down syndrome generally are given fewer opportunities to thrive and have fewer government protections. The CDSS’s approach has been highly controversial within the Down syndrome community. Some have praised its video and efforts as powerful, while others claim it is detrimental to show people with Down syndrome as less than human by equating them to animals. One commenter shared on CDSS’s Facebook video: If the point was to show that people with Down syndrome are ‘disappearing’ due to selective abortions, why not use just them, as people in the campaign? Why dress them up as animals. Comparing their existence to that of animals, doesn’t sit well with me…from time to time, I see in my work people who think of people with disabilities as ‘less’ human…would a campaign like this perpetuate that erroneous perception? I am extremely disappointed in this campaign. People with Down syndrome are not a species. Humans are a species, certain groups of people are not. People with Down syndrome can also be born at any time, making them different than endangered species, which can only be born to parents within their group. Any human can have a child with Down syndrome. Francie Munoz, a Canadian woman with Down syndrome, also spoke out against the campaign. In an interview with CBS Toronto, she said, “I don’t like people comparing me as an animal, it’s not fair.” Munoz said all she wants is respect and to be treated as an equal.”Love us for who we are” she said, “not a character, not an animal.” Regardless of how “well intentioned” this campaign is, the reason organizations use sound bites, posters, billboards etc. is to send a quick and lasting message. If the message lacks context it will be interpreted differently than intended in many cases.— Vince Strain (@crspvinnie) November 8, 2018

Axel Kussmann

Why I’m Not Afraid of the Chaos of Life With Down Syndrome

I confess I’m somewhat over stories about when a diagnosis of Down syndrome is revealed. I get it, it’s the moment when some of us are thrust into a whole new world of special needs parenting, but regardless of whether the needs of the child are special or typical, as parents, we signed up for a lifetime. For that reason, I’m going to try and tell a story that’s about more than a just a moment in time. The diagnosis of Down syndrome became official three days after our second son was born. He had quite a bit of blonde hair for a newborn, and it always seemed to stand on end. I joked that he must be charged with static electricity or something, and we nicknamed him “The Lightning Kid.” “Lightning” became my internal shorthand for any and all things that were magical or special about him, and I confess that includes Down syndrome — even though I argue against the stereotype of people with Down syndrome as magical, angelic or perpetually happy. Axel’s son, “The Lightning Kid” The difference was merely a love of superheroes and magic, so if a nickname (or code name) could give us the courage and ability to handle the adversity of a special needs life, we were going to use it. The “Lightning Kid” nickname stuck, and at sometime in the first two years of his life, we heard the song “Lightning Bolt” by Jake Bugg. I immediately dubbed it my son’s theme song without much thought beyond the fact that it had “lightning” in the title, and it was a boppy little tune we liked to play loud and dance to. It stayed in our music collection, but it was nearly three years later when I really paid attention to the lyrics. Sirens of an ambulance comes howling Right through the center of town and No one blinks an eye And I look up to the sky in the path of a lightning bolt Met her as the angels parted for her But she only brought me torture But that’s what happens When it’s you who’s standing in the path of a lightning bolt The singer describes the random happenstances of life as being in the path of lightning bolt. You could be in an accident, you could fall in love. One of the ways to get right with yourself after receiving a special needs diagnosis is to realize what hasn’t been promised to you. You can look back on the whole process of starting a family and realize how much is beyond your control: When will you get pregnant? Will it be a boy or a girl? When will the baby arrive? And, once it does, whether your child has special needs or not, the path of their life and their character and personality are subject to a lot of chance, too. Fortune, people talking all about fortune Do you make it or does it just call you In the blinking of an eye Just another passerby in the path of a lightning bolt Sounds scary, doesn’t it? It’s hard to confront the idea of so much chaos and randomness infecting our lives. For some, the idea of a grand, divine master plan that is beyond human fathoming is the way to get comfortable with it. Whether you believe in such a higher power or not, we need to acknowledge that random chance brings joy, too. You don’t know how your kids are going to turn out, and you don’t know which of their characteristics you’re going to fall in love with most — a giggle, a cackle, a smile, a song. If you think about the biggest laughs you’ve had in your life, they probably were triggered by something random and unexpected, and some of these become the inside jokes of families or circles of friends for ages. The path your child will take (if you’re lucky enough to have any children when you want them) is not promised to you, nor will it ever be for anyone. Everyone I see just wants to walk with gritted teeth But I just stand by and I wait my time They say you gotta toe the line, they want the water not the wine But when I see the signs I jump on that lightning bolt People think they want the water, not the wine. Water sustains, we need it to survive, and we need it every day. It is also tasteless. The water represents the security and predictability that we need to know that our lives will continue. Wine is an acquired taste, it isn’t appropriate at every occasion, it can turn to sour vinegar, and too much of it is bad for us. In this case, it also symbolizes why we get up in the morning, and all things that make life worth living – for many, wine is used to celebrate. Our family life is chaotic at times, but we did want adventure. I’ve heard it said that life isn’t about weathering storms, but learning to dance in the rain — and I think becoming a special needs family has begun to teach us that, in fact, we don’t just learn to dance in the rain, but also ride the lightning. Follow this journey on The Lightning Kid. The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.