Alethea Mshar

@alethea-mshar | contributor
I’m a woman, a gardener, a wife, an advocate, a mother, and a runner. I am writing a book to be titled, “Hope Deferred”, about the heart sickness of parenting a child with complex medical needs, and the tree of life that inexplicably sprouts from the ashes of our hope. I have 3 kids at home, plus an adult child who has moved out and away. I’m happily married, and I am always thinking.
Community Voices

You Just Found Out Your Baby Has Down Syndrome, Now What?

We opted not to have prenatal testing, so our son’s diagnosis of #DownSyndrome 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.

Eventually, I 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.

This article was originally posted on benswritingrunningmom.me

Community Voices

Dear Cancer

Dear #Cancer,

It was 8 years ago today that you showed your ugly face to us in that decrepit hospital room. You had been ravaging our child for weeks before we found you out, and when you finally showed your despicable face we shuddered with despair.

We have long known you as a dirty-handed villain, we knew that you picked on babies, and hated the idea of you. Then you picked on our baby, and you went from a nameless, faceless boogeyman to our personal nemesis.

We were told that the only recourse was to go to war, and the battle began forthwith. Our son’s oncologist warned us of the cost, and how close the battle within would come to destroying your host, our child. In our haste to wreck destruction on you, we discounted those words, only to recall them when they so quickly came to fruition.

Yes, you almost stole my child, yes, you ravaged his body, his spirit and our whole family. You robbed him of more than we can itemize and there’s no recovering the loss.You took him, and us, through shadowed valleys where every good thing was shrouded by your hideous, omnipresent veil. You pilfered our peace, joy, and hope. You took things you have no right to even touch.

Eight long years after you swept into our lives as a thief, we have repaired the gaping holes you left behind with patches lovingly crafted to cover the horrible gaps. We have used great diligence to restore the chaos you created.

Though we have repaired the outside, fortified our foundations and by most appearances we are whole, those scars remain.

Dear Cancer, as we close this letter it is with the resolve that we will not allow you to have any more plunder than what you’ve already taken. You will not reap bitterness, nor resentment; we will permit you not to perpetuate your ruination, you shall not taste the satisfaction of our rancor. Though the terror you wrought often threatens to creep in, we resolve that peace will win and fear will lose.But we shan’t forget you. In your memory we will pay forward all manner of love, goodness, and Shalom. As a tribute we will share joy, peace and well-being; we will stand in solidarity with the many you continue to pillage.

Dear Cancer, we believe that Love wins, and we won’t allow you to take that from us too.

Sincerely, the fighters

Originally posted on Ben’s Writing, Running Mombenswritingrunningmom.me

Alethea Mshar

Medicaid Cuts Would Harm My Sons With Disabilities

In the current healthcare debate, many people seem to think that Medicaid is a handout to able-bodied people who choose not to work. However, around 90 percent of Medicaid dollars go to the elderly, disabled or working people whose income falls below the threshold for Medicaid in their state. Therefore, reduced funding to the program hits heaviest on the most vulnerable populations. As adults, both of my sons (who have Down syndrome) will rely on Medicaid for their medical coverage. It’s not exactly clear what these cuts will mean to them, and perhaps that’s the most worrisome part of this health care debate. Alex might be just fine if he stays healthy, but Benjamin’s health needs are lifelong. If he cannot stay on our healthcare plan and Medicaid is cut, what would the options be? Nothing here is clear, and for families like ours it’s terrifying. In addition to his developmental and medical needs, Ben has serious mental health needs. He sees a psychiatrist, uses psychiatric medicine, and needs autism therapy, which is a mental health benefit. Without these in place, his well-being is in jeopardy. I cannot overstate the seriousness of this situation. As it is, resources for people with combined developmental, medical and psychiatric needs are sparse. If funding is cut, it would be nothing short of devastating for Ben and our family. But we aren’t the only ones. In fact, we’re pretty fortunate so far. My husband works for the state and has his choice of excellent healthcare plans, of which we have chosen the most thorough and economical coverage. Many are self-employed without access to such benefits. For us, the cost of healthcare thus far has been a strain, but one we can manage. Today we have spectacular medical science that’s evolving and growing daily. We are able to save lives in circumstances that just a few years or decades ago were hopeless. It’s marvelous, simply marvelous. But it’s expensive, as would be expected — too expensive for any but the wealthiest citizens to afford out-of-pocket. Do we reserve such marvels for those who can afford to buy them? Is modern medicine a luxury for the few? Is it a commodity available to only those who have the cash reserves to pay for it? How do we decide who gets this care? Do we deny children whose parents don’t have jobs with a hearty benefit package? Or do we put caps on it and say we can only spend so many dollars to save a person’s life, and after that just shrug it off? Or do we leave people with mental illness without access? This is dangerously close to eugenics. I shudder to think that denying Medicaid coverage for mental illness is a tidy way of saying society shouldn’t be obligated to help. I want to point out that it’s the “pro-life” party endorsing all of this, and I’m calling bullcrap. There is nothing life-affirming or life-protecting about any of this. This is prioritizing finances over people and it’s repugnant. If you suggest that charities or churches should fill in the gaps, please just get off that ridiculous notion. In 11 years of managing complex medical, developmental and psychiatric needs, we have tapped into private resources to a great extent. I’m quite savvy at finding and accessing them, and we have attended a church with a congregational care employee who identifies and designates church resources for families in crisis. Between the two, the help has been incredible for certain things, but only a drop in the bucket compared to the day-to-day impact of copays, deductibles, time and miles. It’s simply not feasible for private organizations to offset such monumental costs. So I ask you, do you really think it’s OK for people to suffer and die when medical care is available, but not affordable? 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. Follow this journey at Ben’s Writing, Running Mom. We want to hear your story. Become a Mighty contributor here . Image via Thinkstock.

Alethea Mshar

Down Syndrome Awareness Is for Adults, Too

I remember when my son Alex was first born, I felt compelled to make sure everyone in our lives knew just how precious he was. I enjoyed great success, but in retrospect, Alex made it easy. Babies with Down syndrome are often adorable, and Alex was no exception. He made my advocacy job easy, and after a while, considering my success, I relaxed a bit on the advocacy. There were IEP meetings, and plenty of parenting tasks to take up my time, so campaigning for the acceptance he already enjoyed seemed somewhat superfluous. Fast forward 14 years, and Alex has hairy legs and armpits, a deep voice, and is almost my height. As any mother does, I still think he’s the most spectacular child in the world, and as cute as ever. However, when you add in significant speech and social skills delays, compounded by the already-interesting early teen phase, he often doesn’t get the warm public reception he once did. But as Alex’s mom, I want to tell you that he is the most thoughtful young man I know. Every single day he asks me how my day was, and even actually listens to my answer. He loves nothing more than cooking, except eating, and will cheerfully lend a hand to anyone who asks. Alex is a gamer extraordinaire, and can beat just about everyone he knows in almost any game. He can throw an awesome spiral with a football, and hit a home run in baseball. (He gets his athleticism from his father, not me.) Alex deserves awareness just as much as the young children do. People with Down syndrome are diverse, interesting and valuable as members of our communities. They have desires and interests, and live full, active, productive lives. More and more they are branching out into careers as actors, models, business owners, and contributing their considerable gifts to the communities where they reside, and their communities are better for it. Follow Alethea at Ben’s Writing Running Mom. We want to hear your story. Become a Mighty contributor here .    

Alethea Mshar

What Families With Special Needs Lost in the 2016 Election

I’ve seen article after article and social media posts galore telling people who voted for Hillary Clinton to get over ourselves and stop crying. I get it, it’s an election result. There’s nothing I can do but accept it and move on. Believe me, I’m working on it. I’ve remained connected with all my friends no matter who they voted for, and am continuing to seek understanding of people who think differently than I do. And that’s why I decided to write this. I did a lot of homework regarding this election. I have strong beliefs that affected my vote, just like many other people. At the end of the day, I made my decision for many reasons, but the one I want to discuss today is disability policy. When I read this article in Complex Child Magazine, I was convinced. My son, Benjamin, has complex developmental and medical needs. His needs are a mile wide and several feet deep. We have been on the waiting list for the Children’s Waiver Program for about 16 months, with no end in sight. The Children’s Waiver Program gives families support to give needed care to their children with complex needs, and supplies paid, qualified respite providers. Ben’s score qualifies him, but the scoring system gives weight on severity, so it would likely be better for us if Ben’s needs were a foot wide and a mile deep, rather than a mile wide and a foot deep. Whatever the reason, we wait. I’m not sure how, I’m not sure why, but Hillary Clinton recognized how much of a concern this is, and had a plan to address it. Part of Clinton’s 4-point disability plan is to expand support to allow people with disabilities to live in integrated community settings. She would also provide tax relief for caregivers, and guaranteed 12 weeks of paid family/medical leave. Clinton strongly supports theOlmstead decision that allows people with disabilities to live in community settings, and plans to ensure that states are meeting their obligations under this decision. Her autism plan and her support of the Developmentally Disabled Act would expand support services at home for all children with disabilities, especially support services to caregivers. As a caregiver who frequently lives with fatigue and struggles against burnout, this meant a lot to me. Enough to secure my vote for Secretary Clinton. As a person who desperately wants to see fewer abortions, this also made sense to me. Pregnancies with prenatal diagnoses of Down syndrome have a high rate of abortion; differing studies cite between 67 to 90 percent. It makes sense that if families had increased paid medical  / family leave, services at home, and support to caregivers, it would be easier for already strained families to welcome children with Down syndrome into their lives. But mostly I’m sad for those of us already there. The families I know who are struggling to get insurance coverage for therapies, the families who are racking up miles and miles going to appointments and therapies and slowly burning out. The families whose kids have significant medical needs, and struggle to meet their work obligations, pay the bills and give their kids the care they need. As a mom who has felt invisible, has struggled to get adequate caregivers for my children, and never has them often enough, being seen by a presidential candidate who considered us valuable enough to have a thorough plan to help me and the families I know gave me hope. That hope is now lost, and for families who have children with special needs, that is reason to be sad. Follow Alethea at Ben’s Writing, Running Mom. We want to hear your story. Become a Mighty contributor here .

Alethea Mshar

What Childhood Cancer Is Like: Going Gold in September

September means many things to many people. Mums replace summer flowers, football is in full swing, we get out our jeans and sweaters, we know autumn is on the way. For me and many of my friends, September also means “going gold” for Childhood Cancer Awareness Month. My son is an acute lymphoblastic leukemia survivor, and as such, I have many friends whose kids have had childhood cancer, are currently in treatment, or have been taken by the disease. For us, childhood cancer awareness is more than something that happens for 30 days at the end of every summer, it’s something that started on a day a medical professional delivered devastating news, and continues every day of our lives from that moment on. In September, I think all the time about childhood cancer. My social media is flooded with awareness messages, and I spread the awareness as well. There’s plenty to share, from statistics and memes to information about side effects and late effects of chemotherapy and radiation. But what strikes me most this September is the endless queue of children who make their way through the Hematology/Oncology Clinic. Yesterday, Ben had a follow up appointment at the clinic. It’s been three and a half years since he finished his leukemia treatment, and almost seven years since he was diagnosed. The clinic we used to visit several times a month and where all the families had familiar faces is now filled up with “new” patients and families, people we don’t know because day in and day out, new people are inducted into the childhood cancer world. The names and faces change, but the diagnoses, the treatments and the devastation never do. Awareness of childhood cancer is hard. It means acknowledging what these kids and their families experience. It means allowing yourself to imagine standing in those shoes, even if you can’t bear to take even a step in them. It means, ever so briefly, letting your mind try to wrap around the fact that children get cancer, and just how horrific it is. But today, just for a moment, I plead with you to let yourself go there. Imagine it’s your daughter under the blanket in the recliner spending her whole day getting “therapy” that will make her vomit, lose her hair, and will hopefully battle the cancer  trying to destroy her. Imagine it’s your son who just got a blood transfusion that will boost his energy, at least for a few days, until the chemotherapy destroys too much of his hemoglobin again. Imagine coming to terms daily with your child’s mortality, and praying they’re in the approximately 85 percent of children who survive. Then do something about it. Follow Alethea at Ben’s Writing, Running Mom. The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here .

Alethea Mshar

Stories of Children With Cancer for Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month. Although childhood cancer is rare, my son, Benjamin is a childhood cancer survivor, so it is does not feel so “rare” for our family. I know many people impacted by childhood cancer, and have highlighted some of their stories so others can get a glimpse of what it’s like being diagnosed with cancer as a child. Benjamin Benjamin, five years after leukemia diagnosis, officially considered “cured.” Photo credit: Faithography Benjamin is my son, and the reason I am writing this. Benjamin is a survivor of acute lymphoblastic leukemia (ALL). When Ben was diagnosed with cancer he had already faced his share of challenges with Hirschsprung’s disease, hearing impairment, cyclical vomiting syndrome and thyroid failure, as well as Down syndrome. Benjamin was a bright little boy of nearly four years old when he was diagnosed. He was learning to write his name and training to pee on the potty. Leukemia treatment has a very high cure rate, over 90 percent, and I heard that from the start of treatment. What I didn’t hear was how much of a toll it would take. Ben is now 10 years old. He still struggles to write his name, and we don’t know if he will ever potty train for pee, for now we catheterize his bladder through his belly button several times a day. His IQ was first evaluated in 2011, just over a year into his cancer treatment, as a routine evaluation for special education services. At that time it was estimated to be in the mid 60’s. Three years later , for reevaluation, it had dropped approximately 20 points. Ben lost nearly one third of his IQ points to cancer. He beat the disease, but was left with terrible scars. I often get angry at what cancer has stolen from Ben, from our whole family. There is so much more than what can be placed into a paragraph. While I am thankful for the advances made in the treatment of the disease, from a survival rate below 30 percent in the 70’s to over 90 percent now, we still have so long to go to give survivors their quality of life in addition to years of life. Mallory Mallory. Mallory is four years old. She is a stage 4 neuroblastoma survivor diagnosed at two months old. She endured six rounds of chemo in infancy, and has been in remission for three years.  The long term effects she has are mild asthma and we have to be overall protective of her skin because of abnormal moles. She is a spitfire and a blessing to our lives. Conrad Conrad. Conrad was diagnosed with ALL leukemia on March 1, 2012. His parents made the difficult choice to stop treatment due to his body not handing it well in March of 2015. Conrad is still in remission (thankfully), but he continues to live with asthma when he gets pneumonia (three times this winter, and it lasts for over a month). He can’t jump. Conrad is  going for neuropsych testing starting next week, to find out how to better help him in school. I have noticed him having twitching “tics,” which he didn’t have before treatment. He can’t fall asleep without melatonin, has acid reflux, and his platelets still have not recovered. His doctors don’t think they will, so he walks around with horrible bruises. He refuses to wear shorts, even in 100 degree weather. He has bouts of anger, and this boy has never been angry in his life, even through treatment. Erin Erin. Erin as a child. “I had cancer when I was five years old. I have recited that phrase hundreds of times in my life. There are times where I want to ignore it, pretend it never happened to me. There are times when I am be very matter-of-fact about it. There are times where I can barely say it without tears. Cancer left me with a scar and one kidney. The treatments to rid my body of it left me with ovarian failure which translated into infertility, and other late effects. The whole experience of going through cancer as a child left me with serious anxiety and depression that I continue work through over 30 years later.However, being a cancer survivor has given me strength, compassion, and empathy. It has given me a desire to do what I can to advocate for more resources and funding for research into childhood cancer treatments and the effects they have on growing bodies. Being a cancer survivor has also allowed me to see how important it is to live the life we have in our faith, in our family and in ourselves with hope, joy and love.” Rebecca Rebecca. “My name is Rebecca, and I am a survivor. I was diagnosed with stage 3c uterine sarcoma at the age of 19 — still young and vulnerable, feeling invincible, newly off to college to pursue my dreams. Life as I knew it stopped. I went through surgery, chemotherapy, radiation, all grueling treatments that shook my world and turned it upside down. After treatment was over, I was left picking up the pieces and trying to put my life back together… My new life. But I was a completely different person. I knew what it was like to look death in the eye. I was strong, yes. But I was also scared. There was fear, PTSD, depression. With time and good support, years went by and I grew stronger. Met my incredible husband and adopted two amazing children. But once cancer and its grueling treatments enter your life, it’s hard to escape their effects. As my children’s bodies grew and flourished, my own body began to betray me. The long-term effects of my treatment damaged my digestive tract, leaving me with non functional intestines. I am hospitalized every month or so, forcing me to be away from my children. I have a port in my chest, similar to the one I had years ago to infuse life saving chemotherapy into my veins, this time it saves my life with nutrition. On paper I am a medical miracle. A strong survivor. In reality, I often feel weak and alone. I am a survivor of cancer. I am also a survivor of cancer’s long-term effects.”     Miles. Miles But not all children survive cancer. On a beautiful spring day in 2010, Miles Quinn Root had a scan which showed a mass in his cerebellum. Upon removal of this mass, Miles had several complications, leading to two cardiac arrests which compromised oxygen to his brain affecting the motor areas while leaving his cognitive mind intact. Miles was diagnosed with medulloblastoma, and began treatment once he recovered from his complications. He went into remission and began recovering, focusing on regaining motor ability and controlling epilepsy, another effect of his cancer and treatment. Then in 2013 he relapsed, and resumed cancer treatment. In early 2014 Miles left his earthly home after being cared for beautifully by his gentle and loving parents. Miles’ spirit survives, but his body could not. I cannot acknowledge the survivors without acknowledging those whose earthly lives cancer has stolen. I had the privilege of meeting Miles and his family while at a retreat, and though it was only a few days, my heart breaks over what cancer stole from Miles and his family. Miles’ family celebrates his spirit and determination each year with The Miles Moovement. Seth Seth. This is Seth. She would’ve turned seven years old on July 14 , but she recently passed on May 23, 2016. One thing to know about cancer is that you’re never safe. She got scans in January, and everything looked great. In April, her tumors had progressed beyond help, just when we thought the worst was behind us. Cancer is fickle and unfair. Children should be safe from such a cruel disease, or at least should be able to survive, and survive with vibrant, healthy lives ahead of them. Please join me in raising awareness of childhood cancer this September. Follow this journey on Ben’s Writing Running Mom  

Alethea Mshar

Dear Ann Coulter: What Did You Mean by the Term 'Standard Retard'?

In her new book, “In Trump We Trust” (which I don’t plan to read), Ann Coulter addresses one of Donald Trump’s more disconcerting displays in which he is believed to be making fun of a New York Times reporter, Serge Kovaleski, who has arthrogryposis. In what I believe is an effort to smooth over the incident, Coulter writes: “Trump denied knowing that Serge was disabled, and demanded an apology, saying that anyone could see his imitation was of a flustered, frightened reporter, not a disabled person. It’s true that Trump was not mimicking any mannerisms that Serge has. He doesn’t jerk around or flail his arms. He’s not retarded. He sits calmly, but if you look at his wrists, you’ll see they are curved in. That’s not the imitation Trump was doing — he was doing a standard retard, waving his arms and sounding stupid: ‘Ahhh, I don’t know what I said—ahhh, I don’t remember!’ He’s going, ‘Ahhh, I don’t remember, maybe that’s what I said!’” I have been watching Trump closely. As a woman raising a daughter, as well as my two sons with Down syndrome, I have been concerned about his apparent objectification of women and, of course, what appeared to be making fun of a person with a disability. Coulter’s explanation does little to reassure me that Trump would ever make executive decisions I would embrace as an advocate for my children, but what I really wonder is: What is a “standard retard”? Upon getting a diagnosis of Down syndrome for my son over 14 years ago, I jumped into our local Down syndrome community and have been actively involved ever since. Additionally, I have spent time in hospitals, special education classrooms, and many other places where there are people with cognitive impairments. One thing I can say without qualification is that, in all that time, with all of these individuals, it is mind-boggling that someone would use a term like that. First of all, people with disabilities and cognitive impairments are entirely individual. You can take any 10 people with any given diagnosis and find 10 people with different appearances, likes and dislikes, and personalities. The vast majority of generalizations of people with disabilities are easily dispelled by getting to know the people with the disability. Second, while I realize that some people still use the term “retard” as slang, a professional commentator and writer with a law degree should arguably be able to select her words more carefully as to avoid insulting a large portion of the population that eschews the term as offensive. But really, what I would like is clarification of what Coulter means when she uses the term “standard retard,” and why on earth she would think her explanation would ever convince any reasonable person that what Donald Trump did is acceptable. Follow Alethea at Ben’s Writing, Running Mom. Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people. Image via Ann Coulter’s Facebook page

Alethea Mshar

Learning It Will Be OK as the Parent of a Child With Down Syndrome

We found out at birth that our son Alex has Down syndrome. Though our neonatologist delivered the news beautifully, he arrived after an emergency c-section which left us raw. That night we had a lot to wrap our minds around, but after I stabilized, the staff rolled me down to see our son, and at that moment, I wondered if maybe it would be OK. The next morning my husband showed up with a smile, an encouraging word, and a stack of books, and I thought maybe it would be OK. I arrived home from the hospital to a finished nursery, but no baby;  I wondered if it would be OK. Our baby got discharged from the hospital; I thought maybe it would be OK. I struggled mightily with pumping milk and feeding him; I wondered if it would be OK. At 6 weeks old he latched on and nursed; I thought maybe it would be OK. He never really crawled; I wondered if it would be OK. He walked at 19 months; I thought maybe it would be OK. He slowly learned words and signs; I thought maybe it would be OK. He started preschool and regressed; I wondered if it would be OK. It continued on and on, and somehow the wondering faded and the maybes grew into confident yeses. Alex is 14 now, and I don’t really wonder any more if it will be OK. Somewhere along the road, I have learned that sometimes we veer off the path we need to stick to, but we always find our way back. My confidence is in our ability to navigate the rough waters, though we still don’t always avoid them.  Even when things aren’t OK right now, they really are OK, and they will be OK. Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today! Available for purchase on Amazon and iTunes .

Alethea Mshar

Questions People Ask About My Kids With Down Syndrome

When people find out that I have kids with Down syndrome, there are certain turns the conversation always seems to take. Whether it’s questions, assumptions, or myths that need busted, Down syndrome is a conversation starter.  Here are some of the most common questions and comments I get, and my answers. 1. “I love how they’re always happy!” While I love the positivity in this statement, it’s categorically false. Down syndrome does not alter the range of emotions a person is capable of experiencing. My boys express an enormous range of emotions.  I am not sure there’s any emotion they are lacking. They have the same feelings as any other child. 2. “There are levels of Down syndrome, right?” I’m never quite sure what this one means, but I hear it a lot, but no, there are not levels of Down syndrome. Down syndrome affects different bodily systems like cognitive function (IQ), digestion, heart, muscles, and even facial structure and more. How each individual is impacted in each area varies widely.  Some people have majorly affected hearts and some have no heart problems at all. Some people have lower IQ’s and some have average IQs. To take my two boys as an example, Alex’s IQ is in the mid 60’s, so he’s mild to moderately impaired in cognition. He was born with a small hole in his heart which repaired on its own, with no intervention, and health-wise, he only has ear, nose and throat problems. Ben’s IQ is in the 40’s, and he was born with Hirschsprung’s disease and hearing impairment. Ben has no heart problems, but he had leukemia, which is more common in Down syndrome. He also has autism, which is more common in Down syndrome, and a few other medical concerns. As you can see, just between these two individuals, there is enormous variation, and that is the case with all people with Down syndrome. 3. “Are they ‘high functioning?’” What exactly does this mean? My guess is that saying “high functioning” makes people feel better about Down syndrome, but it’s not really a useful term. When I first had a child with Down syndrome, I bought into the myth that “high functioning” is better. While I can see that higher intelligence might make it easier for a person to become as independent as possible, I no longer consider “higher functioning” as better. Each individual has much to offer, and there’s no reason to assume any one factor is better than others. There are also certain questions that I get specifically as a parent of two children with Down syndrome. 4. “Are they both yours?” Um, yeah.  I didn’t kidnap anyone. I believe this question is asking if one is adopted. I get the curiosity, but I never quite know what to say. I generally try to give this one a positive spin by saying we enjoyed parenting Alex so much that we wanted another child with Down syndrome. In our case, yes, one is adopted. There are usually dozens of adoption spin-off questions as well. But Ben’s story is Ben’s, and involves a whole other family, so I try not to overshare a story that involves so many other people. 5. “How do they get along?” How do your kids get along?  Hugging one minute and Ultimate Fighting the next?  Yep, mine too. 6. “Are you going to have more?” I don’t believe so, but children tend to kind of fall into my lap, so I remain open.