Bbay boy with Down syndrome wearing glasses, sleeping, superman cape above him while i the middle of stuffed superheroes

My Son With Down Syndrome Is 'The Rule Breaker'

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I guess it was one of the first things we learned about you — you would break all the rules. The doctors advised us in medical terminology what would be difficult for you and what you would need to overcome medically to thrive in society.

Prenatally, doctors predicted you would be dead or stillborn due to an enlarged brain ventricle. You were born and although your left-brain ventricle is one millimeter larger than the other, you are alive and well.

Doctors predicated if you were breathing upon birth, you would need immediate surgery because you had tracheoesophageal fistula and would have a three to four month hospital stay for recovery. You only spent two days in the hospital at birth and your stomach is perfectly fine, no surgery or long term hospital stay needed for you.

After an immediate ultrasound after your birth, a radiologist report advised you were missing part of your brain. One road trip to see a specialist determined you have all the pieces of your brain and there isn’t anything to worry about.

At your 2 month echocardiogram checkup, the radiologist advised you would require open-heart surgery for a shunt, possibly two, by your 4 month check up it was established no open-heart surgery was needed.

 

Physical therapists said you would struggle with your low muscle tone in areas such as tummy time and rolling over. You’ve excelled at both and you’re not even 6 months. In fact, you seem determined to crawl more than any other baby I know.

The lactation consultant said most likely you wouldn’t be able to breastfeed, yet this is your happiest thing to do.

The standard medical documentation tells me you might not vocalize, but you’ve been doing so since you were 2 months old. Also, it stated you may have hearing problems, but your latest hearing test established your hearing is perfect. Same with your eye exams.

But alas my son, there will be adversity in your future. You will not be able to escape it, no one is. It is what makes us stronger in ways we are unable to predict. I will have to fight against my motherly instincts to try to make your life easier and without problems. And I think the only way I can do that, is if I can remember that you, my son, are “The Rule Breaker.”

So watch out world, my son has only just started his journey and broken more rules, stereotypes, several predetermined outcomes and many hearts than most of us do in a lifetime. Fair warning.

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The Day a Stranger Recognized My Son Has Down Syndrome

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The day came, the one I wondered about for quite some time, the day a stranger recognized the Down Syndrome traits in my child’s perfect little face, and she approached me.

It was like any other Costco trip before, except this time I only had two of my six children with me (this is rare). We were perusing the aisles before heading for my 11-year-old’s favorite part, the samples. As we wheeled past the cheese and crackers we paused and she caught my eye. Everyone always comments on my little one’s hair; I must say Cedar has some awesome locks. This was not unusual, but once the woman commented on his hair and made a bit of small talk about how old he was, she paused.  She just kept looking at him and I knew something was coming. Her hand lingered on his bare little foot just lighting on his big toe.

This, I might add, is one of those defining moments.  I have had them before, and I have failed. Like the time I missed a connection because I just didn’t want to talk about Down Syndrome. I have wondered, sometimes, if a stranger will catch me on a bad day and they’ll say something rude, or just ignorant.  Another blogger, Erin, at the Lucky Wells, wrote an entire post about just this thing and I read it shaking my head all too knowingly that the day would come.

A mom kissing her baby boy with Down syndrome, he is wearing a stripped red and white onsie.

The funny thing is, sometimes I don’t see Down Syndrome. I mean at certain angles in photos I see the textbook physical traits that my Cedar possesses, but overall, he’s just my sweet little babe and though I know it is a part of him, it isn’t the main thing I think about or see anymore. As a new mom of a child with Down syndrome, I sometimes wonder if people see it yet when they comment on his hair or something about him.

 

Time stood still for just a moment and when it did, I breathed and decided this could turn out to be an educational moment. But then she smiled and asked if we had chatted before. I didn’t remember ever seeing this woman before in my life so I smiled back and said I didn’t think so. She went on to tell me that she had a grandbaby just about the same age as my Cedar. Then she said, “My grandbaby is a twin, and one twin has Down Syndrome.” I was no longer tense, the ease that washed over me was likened to a wave leaving me, feeling refreshed and rejuvenated. I quickly blurted out, “My son has Down syndrome, too!” She smiled again and told me he was beautiful, it melted my heart.

So it happened, the physical traits that allow others to see that he indeed has something a little bit extra were visible to a complete stranger, but it led to the sweetest exchange. I love that this is the first experience I have had in public by a total stranger acknowledging my son’s extra chromosome. It was such a positive exchange and the woman’s eyes lit up when talking of her granddaughter. It was very special to make a connection like that.

I went home that day feeling excited, feeling like I no longer had to worry about the first time someone in public acknowledged my son has Down syndrome, because it had already happened and it was perfect. No ignorant comments this day, no grace-filled smile as I explained what Down syndrome is. Nope, just a sweet exchange between two women who both love someone with a little something extra.

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This Land Was Made for My Son With a Disability, Too

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The Fourth of July is a time of reflection on our nation’s past and present. As a mom to a son with a disability and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Troy, a little boy with Down syndrome holding an American flag.
Troy, a little boy with Down syndrome holding an American flag.

When Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence, he probably wasn’t thinking of people like my son Troy, who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son, Troy, was born life expectancy had more than doubled to 60 years old. Many laws contributed to this amazing feat, one of which was Medicaid. The social program was a bipartisan solution to healthcare for the poor, and was signed into law by President Lyndon Johnson in 1965.

In 1981, Ronald Reagan approved the Community and Home Based Waiver Provision within Medicaid. The waivers are rooted in the idea that individuals with disabilities are happier, safer, and more free in their home and community. Not to mention, it’s a cheaper alternative to institutionalizing individuals with disabilities.

Troy (left) with his twin, Hunter.
Troy (left) with his twin, Hunter.

The healthcare proposal that recently passed the House of Representatives and is currently in the Senate would cut Medicaid by $834 billion dollars over the next decade. Half of those cuts would come from “per capita based caps.” This means, instead of a federal and state partnership, the federal government would cap the amount of money they give to states to a fixed amount. Cash-strapped states would likely cut Community and Home Based programs first.

Troy playing T-ball.
Troy playing T-ball.

In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At almost 5-years-old, Troy, can do everything his neurotypical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee ball team as his typical peers.

What you may not realize is the supports he receives during early intervention and in his inclusive preschool (like PT, OT, and speech) are partially funded through Medicaid. When my son reaches adulthood, Medicaid provides job training, transportation, and independent living supports through local Dayton programs like Project Search. At birth we put our son on Ohio’s Medicaid waiver waitlist for these adult supports and services. As Medicaid stands right now, that waitlist is 18-25 years long. What will happen if these cuts are approved? Likely we’ll never see the end of the waitlist; if we do, the services will likely not be what they are today.

Ohio Governor John Kasich opposes the Senate bill and in a letter with three other GOP governors stated: “It calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.” Over 700,000 Ohioans would be impacted by Medicaid cuts if approved.

Troy and I met with Senator Rob Portman’s staff in June. We shared our Medicaid story, but staffers gave us no indication of how Senator Portman felt about the disability community. After the Senate delayed the bill, Senator Portman came out in opposition to it, citing the opioid crisis here in Ohio. For sure, drug treatment and mental health will also be negatively impacted, but the disability community must not be ignored. Call Senator Portman or your own Senators today at (202) 224-3121, remind them how far we’ve come as a nation in the treatment of our most vulnerable citizens. Tell them to save Medicaid, and vote NO to any cuts or caps on the program.

Save Medicaid - No Caps, no Cuts!

 

Follow our journey of advocacy and inclusion at Inclusion Evolution.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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'The Peanut Butter Falcon' Stars Zachary Gottsagen, an Actor With Down Syndrome

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A new adventure movie is currently in production and it stars Zachary Gottsagen, an actor living with Down syndrome.

“The Peanut Butter Falcon” tells the story of a young man with Down syndrome named Zak, who runs away from a nursing home to pursue his dreams of becoming a professional wrestler. Tyler, a small-time outlaw, played by Shia LaBeouf, becomes Zak’s coach and ally as they make their way to a school for wrestlers. The film will also star Dakota Johnson and Bruce Dern.

The role of Zak was inspired by Gottsagen, who met the film’s writers, Tyler Nilson and Michael Schwartz, while they were working at a non-profit arts organization. Gottsagen previously appeared in “Bulletproof,” a 2012 short film about saving a family business, as well as “Becoming Bulletproof,” a 2014 documentary about the film and the importance of casting actors with disabilities.

“I work and make films with Down syndrome actors. Many of them struggle to maintain a regular life, not because of their disabilities, but because of others disbelief in their talents,” Nilson said in a statement, adding:

I have had many friends with Downs placed in old age homes because of lack of proper care. I know how beautiful freedom is, and I know what it feels like to be locked away as well. I am grateful I know that freedom in the outdoors and my heart aches for my friends with Down syndrome who touch only linoleum floors and plastic all day. I am not making this film for them. However, I am making it for the people who believe it is ok to dismiss them and lock them away. Prejudice towards Down syndrome is costing a lot of young people good years of their lives. Everyone should know what it feels like to go a little wild, even if you’ve got an extra copy of chromosome 21.

“The Peanut Butter Falcon” is scheduled for release in 2017.

The Mighty has reached out to Lucky Treehouse for a comment and has yet to hear back.

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My Son Is Not Brave Just Because He Has Down Syndrome

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We had a “first” this morning, a comment from a customer at out store that took me slightly aback.

I haven’t had many comments regarding Down syndrome, other than a few “you can’t even tell” in the beginning. I usually get comments about how cute my children are, how happy they seem, how well behaved they are and the fact they have lovely natures. Is there a bigger compliment than someone saying you have lovely children? I’ve never had a bad exchange, and I’ve definitely never had anyone be purposely mean or disrespectful. Hopefully I never will, but who knows.

Me and my husband, Reagan, were talking and I mentioned I didn’t think that people really watched us. I mean, I never really see anyone staring at us. His said he sees people watching us all the time and that I’m just oblivious to it. He told me he often sees people watching me with the boys, in particular, River. I had no idea! He also said he feels proud when he sees me wrapped up in our own little life and not noticing that people seem to be drawn to it. Probably one of the best compliments he could have given me because it’s exactly what I want to teach my boys, to concentrate on living their lives and being happy.

We smile at people and say “hi,” we are friendly and I often start conversations because River is determined to high-five random strangers. I certainly don’t have a guard up or worry that people notice River has Down syndrome. I couldn’t care less about that, I actually hope they do and see what a great life he has along with it. I hope they see Down syndrome isn’t limiting him and it isn’t “the end of the world.” Far from it! It never really crosses my mind when we are going about our everyday lives that people notice River is “different,” and I guess that’s because I don’t see or think about him as “different.” Our life is our “normal,” it may be unique to other people but to us it’s “normal.”

My husband also said he has never seen anyone look at us in a negative or disrespectful way, it’s always in a curious way. That is completely fine with me and is actually exactly what I want. If anyone is learning something from looking at us, then look as much as you want. Society needs to see families like mine getting on with living our lives, they need to see we are a “normal” (there’s that word again) family, living a “normal” life. Especially here in Tanzania where so many children with disabilities are hidden away in shame. Our friend, Abuchu, spent 30 years of his life locked in a tiny dark room, never leaving it just because he has Down syndrome and his parents were ashamed. I want to show families here that their children can live great lives and they deserve to be given that opportunity. It breaks my heart to think that some parents believe they have been cursed or are being punished by God; that they see their own children as a “vengeance.” Neither of my kids is a “punishment,” River and Skyler are the best things to ever happen to me!

So this morning’s comment wasn’t a bad comment, the lady who said it was lovely and meant no offense at all. I’m sure she would have been horrified if she thought she’d said anything to make me feel uncomfortable.

We were in our store and she came in to buy some gifts. She noticed River, and after he forced her into a game of rolling the car back and forth we got talking. Everyday things, the weather, her trip, how long I’ve lived here, etc. As she was leaving, she held River’s face, kissed him on the cheek and said, “you are such a brave little boy.” It hit me like a brick and made me feel instantly uneasy. It communicated she felt sorry for him and our circumstance, and pity is the one thing I don’t deal with very well at all. So in true British fashion I inserted a bit of humor and told her we luckily hadn’t had to test his bravery yet, as the biggest health complication he’d had was a severe case of constipation.

Looking back though, making light of it made her comfortable enough to ask me questions about Down syndrome and what it means for our family and for River. I love the fact that she left with a bigger understanding and a whole new opinion, and she understands now that our children are not suffering because they have Down syndrome. Our exchange actually reinforced everything I already believe, that most people who may say the wrong things have no idea they are saying something that you find offensive; they mean no harm. Most people have good intentions and I don’t believe we help anyone by being on the “defensive” all the time. I don’t believe we help our children by building barriers around ourselves.

I’m not saying that no children with Down syndrome are brave. There are children who have heart conditions, leukemia and other life-threatening conditions and they are incredibly brave every single day. Some of the bravest people I know have Down syndrome. There are also families who are incredibly brave and inspiring, and I hope my own braveness is never tested in the same way.

Having Down syndrome does not make my son brave. He’s feisty, fearless and determined, but right now his braveness is limited to climbing as high as he can, catapulting himself over the back of the sofa and quickly swiping his brother’s last bit of cake and shoving it in his mouth! He’s not in any way suffering and has a very happy and blessed life. I do, however, hope he grows up to be a brave man. Just as I hope his brother, Skyler, will grow up to be a brave man. I hope they are brave enough to fight for what they believe. I hope they are brave enough to choose love and kindness, and not hatred and anger. I hope they are brave enough to take risks. I hope they are brave enough to follow their dreams, and in River’s case even if society doubts him. I hope they are brave enough to turn their backs on the division in this world and any negativity.

I hope that River is brave enough to prove the world wrong.

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How Medicaid Keeps Families Together

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My daughter Leah was not quite 24 hours old when I overheard the pediatric surgical team discussing her case in the hallway of the neonatal intensive care unit. “Look at her — are we going to do a repair on this tiny baby? No — it will be at least five months before she’s ready.” Leah was born two months early, with Down syndrome, two holes in her heart, a congenital diaphragmatic hernia, and long-gap esophageal atresia, a rare condition in which a large portion of the esophagus is missing. She would not be able to leave the hospital until the esophagus was repaired. Her first surgery, to place a feeding tube directly into her stomach, took place when she was 2 days old and weighed just over three pounds.

Leah stayed in the ICU for seven months. We brought her home on oxygen, a feeding pump, steroid treatments via nebulizer, and methadone to wean her off of the extensive regimen of pain medications, sedatives and paralytics that had been required to immobilize her for nearly two weeks following her esophageal repair.

In the year after Leah came home, she averaged seven to 10 doctor and therapist visits per week and spent the equivalent of another month in short hospital stays. Today at almost 4 years old, Leah still relies heavily on her feeding tube, and requires hours of speech, occupational and physical therapy each week in addition to her preschool special day class. She has been in the operating room 21 times and has undergone 33 procedures during those OR trips.

Despite her complex and challenging medical history, Leah is a happy, beautiful and thriving little girl. She likes swing sets, Raffi, tea parties and “Frozen,” and she knows over 200 ASL signs and recognizes several letters of the alphabet. She is the queen of “Head, Shoulders, Knees and Toes,” and she can Hokey Pokey like that’s what it’s all about. We attribute much of her progress and good cheer to the fact that aside from hospitalizations for acute conditions, Leah has been able to live at home, with me as her primary caregiver.

Fifty years ago, a child like Leah would be condemned to lifelong institutionalization in a state-funded nursing home for the developmentally disabled — and that’s if the doctors made the effort to save her in the first place. As recently as the 1980’s, doctors famously convinced a couple to let their newborn with Down syndrome and esophageal atresia starve to death in the NICU because it was purportedly the “compassionate” choice. If a child with Leah’s conditions did survive infancy, she would be 100 percent reliant on care providers for the remainder of her life.

But it’s 2017, and Leah doesn’t live in a nursing home. Instead I take her to her countless weekly appointments; coordinate her medical care with multiple specialists; order and organize medical supplies and equipment; prepare and administer her g-tube feeds, medications, oxygen, and nebulizer treatments; follow home therapy regimens to reinforce her skills at home; monitor her caloric and fluid intake; assist her in oral feeds and watch closely for choking and “stuckies” (the EA parent’s nickname for food getting stuck in a child’s esophagus due to poor motility); advocate on her behalf with the regional center and the school district; and make sure she doesn’t pull out her g-tube or otherwise injure herself due to lack of safety awareness. I do the work of a nurse, a service coordinator, a social worker, a chauffeur, an executive assistant, and above all, a mom.

I am able to provide all of these services to keep Leah out of a nursing home because years ago, the government realized it could both save money and improve the lives of people with developmental disabilities by shifting resources away from institutionalization and toward providing home and community-based services, including in-home nursing and attendant care.

In California, these services are administered through In-Home Supportive Services (IHSS), a Medicaid program that provides home attendant care for the elderly and people with disabilities who are at risk of institutionalization, alongside state waivers that ensure that all people with developmental disabilities can access these programs.

When a parent is unable to work full time because of a child’s extraordinary needs, the parent can be paid (at minimum wage, mind you) as the child’s in-home attendant to provide services for needs that go above and beyond what is developmentally appropriate for a typical child of the same age. By allowing parents to be paid as care providers, the state saves money it would otherwise spend on institutionalization, parents keep a roof over their families’ heads, and children receive care in the environment that leads to the best long-term outcomes.

And it should go without saying that all else being equal, kids are better off living with their families than in nursing homes. Today, the average life expectancy has more than doubled for people with Down syndrome, a statistic partially attributable to improved outcomes for infants with heart defects, but surely also the result of not warehousing them out of sight in state homes. One only has to Google the term “Willowbrook State School” to see the conditions in which some children with disabilities lived only 50 years ago.

Today many adults with Down Syndrome are able to live independently or with the help of life-skills coaching and community supports, due in large part to publicly-funded early intervention services. This reduces the number of people who become dependent on the state for complete care as adults. Overall, home-care programs are a win for everyone involved — the government, the family, and the person with disabilities.

These vital programs are at risk in the face of current threats to Medicaid. The Senate’s proposed health care bill slashes funding to Medicaid across the board, and the proposed per-capita spending caps mean that the number of people who rely on Medicaid will grow faster than the amount of funding made available for it. This poses a huge threat for waiver programs that provide home-based care to the elderly and people with disabilities. If states lose huge portions of their federal Medicaid funding, they will be forced to come up with the difference themselves, and if the past is any indication, programs for people with disabilities will be first on the cutting block — particularly programs for children.

The last time California suffered a major budget crisis, state officials attempted to slash IHSS services by 20 percent. Supreme Court-mandated protections for people with disabilities kept California from successfully carrying out this cut, which would have led to institutionalization for thousands of Californians. This time around, the Supreme Court decision — which takes into account the State’s available resources – may not be enough to save Californians at risk of institutionalization.

Vice President Hubert Humphrey once said that “the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in shadows of life, the sick, the needy, and the handicapped.”

Right now, we are facing our nation’s greatest moral test in decades. For my daughter’s sake, I hope we pass the test.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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