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Don’t You Dare Limit Them

trisomy-21

Trisomy 21: It is just one very tiny microscopic difference in one building block of the human DNA. Just one, and it happens in the immediate flash of the very beginning of life’s creation when the chromosomes split. But it does not change the humanity or collapse the worth of the human individual with this slightly different foundation. It just makes the life a little more challenging and interesting. It is how we approach and value it that says far, far more about us than is does the T-21 person, and believe me … They are a whole person. Trisomy 21, or Down Syndrome as it is commonly called, is not a disease. It is a genetic disorder. Those with DS are not “mentally ill”. They are, yes, mentally retarded. The stigmatism of that word, retarded, has been one of the worst distortions of terminology in our modern times. Think of my approach to using the word this way: When you hear “flame retardant” your initial thoughts go to something keeping you safe. That’s a good thing, right? Next, you realize “retardant” means a slowing of said flames/fire. In Down Syndrome, and other forms of special needs retardation, there are different degrees based on the individual. It means that that individual may only be able to advance their mind and intellect to that of a young child, even at an adult age, where as another DS individual may be able to learn math and reading/writing to an acceptable high functioning level. How many “typical” individuals meet their potential? People with DS, if given the direction, support, and opportunity can, and do, become real members of society … no longer locked away as “throwaways” in mundane institutions, undeserving of close family love, life, and conflict(s). In a society where PC has gone off the proverbial rails in dictating words and their meanings, there is one word that actually needs brought back to its proper context and usage, and that word is “retardation”. For far too long it has been the cheap foil in a joke, or a demeaning condescending verbal attack at somebody/something they disagree with … Demeaning and condescending to actual DS/mentally retarded members of our human society who had absolutely nothing to do with their genetic condition.

As the parent of a warm and beautiful sixteen year old daughter born with Down Syndrome, I can tell you for as much as she has learned in her young life, she has taught me and our family so much more about life, love, and God’s infinite wisdom. We have been so blessed with our great gift of Lizzie Rose. Every met milestone in her life not only brought joy, as it does to all parents, but relief, which brought even more joy.

pretty-in-pink(Lizzie Rose – high school classroom 2016)

As we all know, all children/people are individual and different. What many do not understand is that this is exactly the case with children/people with disabilities, such as Down Syndrome. I think a lot of folks have a bit of a cookie-cutter belief about people with Down Syndrome and their intellect and personalities. Not so. I confess to sort of being one of those folks before I gave birth to my lovely Lizzie Rose. As I stated above, I have had a serious education these last 16 1/2 years via this patient and loving little teacher who loves me unconditionally. If the Sun flickered out tomorrow my and my family’s world would still glow bright and warm from her. She has been a huge inspiration to her two older sisters who chose to become doctors because of her and all the various medical checks and balances a family of a special needs baby/child go through. And her two older sisters have been advocates in society, especially with those who treat special needs people as cheap butts of jokes or offhanded remarks.

My middle daughter Katie was stunned and outraged as she occasionally (and surprisingly/disappointingly) ran into some of this with fellow students while attending medical school. The few times Katie ran into such remarks she would allow the moment to pass for a short time and then one-on-one approach the person and say, “Hey, want to see a picture of my beautiful little sister? I just love her!” Of course they would always eagerly say, “Yes!” Katie would flash them her latest photo capture of Lizzie Rose on her iPhone. She would never chastise them for their careless prior remarks about “retarded” or “Down Syndrome”, just simply show them Lizzie’s photo and smile kindly. Each time a heartfelt apology would be immediate as they recalled and realized the careless moment from earlier. A lesson to them as well … You never exactly know who you are talking to.

Here is where I must connect parts of my second and third paragraphs of this post. As Katie would be very subtle in her educating of others, my oldest, Sara, would be more immediate and in-your-face when she experienced such moments like Kate’s with the ignorance. Where Katie is my ‘wrestler’, Sara is my ‘street fighter’. I was at the grocery store one morning with an older, pre-toddler Lizzie in the buggy seat. Katie was with us and was middle school age. An older woman came over and was being so sweet and playfully animated with her, making Lizzie smile and even giggle. The woman sparked up a small conversation with me by saying something she never dreamed would set me off … “Oh! They’re such sweet and loving people!” As the mother of a young DS baby the poor woman had no idea how many times I had heard that since Lizzie’s birth, and worse, she had no inkling I would be calmly, but firmly, sniping back, “They’re not a breed of dog. They’re individuals who have good days and bad days, and lots of opinions on everything that they’re not afraid to share … Just like ‘typical’ kids. They are ‘normal’ kids.” I caught Katie’s silently horrified glare. I then apologized and explained how unfair I was being to her, that she wasn’t the first to make the remark, and that she had no idea she wasn’t … and that I knew she seriously meant well. She was very gracious and understanding. And now, when I am out in public without Lizzie Rose, and I find myself possibly making another parent with a DS child with them I dig out my iPhone and smile as I step close to the parent and show them my latest photo of Liz. A casual conversation ensues, with the sharing of helpful information. Around the country there are usually local family support groups for Down Syndrome. Thankfully.

My biggest advocacy these last 16 1/2 years has been an even stronger anti-abortion stance than I had prior to Lizzie Rose’s birth. My creed is “They deserve to be born”. You have to understand that after the pro-abortion community first throws down the “woman’s right to choose” card, they then go directly to the “viability” and “quality of life” of the unborn. Oh, it’s just plain wrong for a pregnant woman to bring another baby into her life if she is poor and/or unsupported, or just plain in a busy career. However, should that unborn baby be found to be special needs, that life is judged even worth far, far less than an animal’s coming litter of babies because the would be mother’s singular expectation(s) of that child’s life might not be met. It is a willful and selfish ignorance that deliberately dehumanizes people and the unborn who have special needs. And should these special needs babies make it full term and through birth there surely is a complicated journey through simplicity, if that makes sense, where life becomes moment to moment and day to day, and less of an end goal at ‘legal’ adulthood. Yes, “legal”. Lizzie will turn 18 in 1 1/2 years, and I and my husband will have to go to court to obtain ‘guardianship’ of our daughter for the rest of her life, or ours. At that same time her two older sisters will be set up to take custodial guardianship, should something happen to me and my husband. Yes, having a DS, or any special needs child, is a lifelong commitment … But is it not that way, to some degree or another, with any of our children?

Last year the cable channel A & E came out with yet another ‘reality show’. Ugh! Really? I mean, do we really need another eye-rolling ridiculous reality show? Yes! Thank God, yes!!!

2born-this-way

“Born This Way” takes the viewer(s) into the friendship circle world of a small group of young DS adults, a different segment of Millennials if you will. It is a mixture diversity of males and females, and even ethnicities (one of the young women is half Japanese and was born and lived in Japan, where such special needs children are treated not-so acceptingly, during some of her early childhood) with more than Down Syndrome in common, but a lot more not so in common. They know, understand, and own their Down Syndrome, but it is ‘what they are’ and not ‘who they are’. The group dynamic becomes secondary to the show, as it easily really becomes all about the complexities of their individual lives, issues, hopes and fears, idiosyncrasies, and goals/passions for their own lives … and their relationships with their families. Some of those individual fears and foibles might seem silly to outsiders, and their goals and passions not that complicated and something(s) most of us take for granted. And believe me, this laundry list of details is not unique to the DS cast but also to their parents. But they personally and willingly own those fears, foibles, failings, successes, and goals … So, as young private business owner Meghan preaches…

meghan

It is an ideology Megan has gone nationally and even across the world to spread in her advocacy for children/people with Down Syndrome, and has even had to remind her own loving and overprotective mother of at times. Megan wants to achieve great things by moving from Colorado to Las Angeles, California, but realizes she is not safely or securely independent enough to leave her Mom behind in the Rocky Mountains at home with their unique and beautiful tie dye clothing and accessories business called “Megology”. After the move to LA, she was hired at a local special needs organization for her first real job. Exciting!

But there really are “limits” that are addressed in the show’s running timeline of covering these young adults’ natural course of events in life’s milestones … Marriage and having babies. Many of the DS cast members want to find that long-lasting relationship and get married. But a couple of the girls express a desire and goal to “have a baby”. Their parents are tasked with treating and addressing that, yes, dreaded and intrinsically highly complicated issue with their daughters as wisely and gently as possible, knowing the depths of disappointment that will follow…

meg

Some of the others within the group have jobs out in the community’s businesses. We have a determined rapper who is working on a second CD, a shy and insecure poet, an aspiring ballroom dancer and her devoted fiancé, a thoughtful and sweet guy who wants to learn how to ride a bike and make sure his friends are emotionally supported and cared for while hoping for a love of his own, a gifted photographer (this second season has seen more young people brought into the group that meets inside the community center and at their private home parties and gatherings), and a “ladies’ man” who seriously wants a tattoo but doesn’t have the money. Those are the main individuals the show concentrates on. The first season was an introduction of these young people to an audience that, perhaps, didn’t have any personal experience with DS, or did have the experiences and could find many things they could closely relate to. It is an episodic look into actions and interactions, and reactions of this little pocket of society this handful of friends have begun building with each other.

bornthisway

I find myself laughing/chuckling at their sweet and simple innocence and humor in such a chaotic world we are willingly, or unwillingly, caught up in. And I find myself wiping away tears when something with one of them and their parents mirrors something I/we have experienced with Lizzie. For example, during one of Megan’s smaller speaking events she was addressing student about her age that were going to school to become special needs educators/teachers. She brought along her Mom, who related her heart-wrenching post-birth experience of having the doctors and nurses cloistering away tiny newborn Megan to the nursery out of her reach so that the medical staff can do a full work-up to rule out any acute medical issues. This unintentional void in the immediate mother-baby bonding is crushing, and I too experienced it (yep, I wiped away tears and sniffled when she conveyed her experience and feelings to the pin-drop silent classroom). Since then I have strongly suggested to medical professionals and early interventionists that the mother, or at the very least the father, be personally present in the nursery or testing areas while this is done. The separation during that time is, yes, a scar that remains within a mother’s heart and soul.

*cleansing breath*

Anyhow, “Born This Way” is winding down their second season, and likely will be renewed for a third, as the show just won its first Emmy Award a few nights ago!!! And besides the obvious kudos to all those wonderful and talented who are responsible for the show in the background and behind the scenes, these vibrant and very interesting young adults deserve the satisfying excitement and high honors and positive exposure…

Dear Emmy voters,

Congratulations! You got it right by giving the Emmy for outstanding unstructured reality program to “Born This Way.”

“Born This Way” is the rare reality show that features characters who are neither petty nor inane and that has a greater purpose than keeping up with the Kardashians — which is ironic, because the same production company, Bunim/Murray, also brings us “Keeping Up With the Kardashians.”

The program, now finishing up Season 2 (10 p.m. Tuesdays on A&E), looks at a group of people who are practically invisible on TV: the 400,000 Americans with Down syndrome. And what the show does is remarkable. As the nonprofit advocacy group RespectAbility puts it, “ ‘Born This Way’ breaks down stigmas.” …

Yes, it is very exciting and groundbreaking: Glass-ceiling broken at Emmy Awards: First Series Starring Cast with Disabilities, Born This Way, Wins

Show creator Jonathan Murray, the innovator behind the first-ever reality-show, The Real World, and many other hit shows including Keeping Up with the Kardashians, said the cast members of Born This Way remind all of us that “every individual has something to contribute.”

“In thinking about the show, we wanted to focus on the ability within the disability and I think that is what is exciting to see,” said Murray. “We are also very proud of the fact that our cast is very diverse. Born This Way is not only the first show to win an Emmy that stars people with disabilities – it also has a cast that includes people who are African American, Hispanic and Asian. This is a breakthrough for those minority communities as well.”

RespectAbility, a nonprofit organization working to end stigmas and advance opportunities for people with disabilities, has been honored to consult during the creation of Born This Way and congratulates the entire team for its hard work in achieving this recognition.

Jennifer Laszlo Mizrahi, its president who herself has a disability and who knows what it means to raise a child with multiple disabilities, said: “I am thrilled that the Emmys see the value in showing real people with disabilities and their powerful lives on TV. For generations TV-viewers saw people with disabilities through the lens of the Jerry Lewis telethon. Though it was well intended, it showed people’s inabilities and used a lens of pity. Born This Way is empowering and uplifting. It shows, as one member of the cast frequently says, that the public should not ‘Limit me.’” …

Don’t judge me on my condition … See ‘me’!

emmys

So, yes! “They deserve to be born” and “Don’t limit them”!!!

“Born This Way” on A & E Tuesday nights at 10:00 ET. Check local and provider listings. But as has been pointed out, season 2 is winding down to the last episodes. However, season 1 and the episodes from this season are available ‘on demand’ on your cable/satellite providers’ service.

Give it a try and binge watch this weekend. Trust me, you’ll be hooked. It might put your life into a bit more perspective. And I promise, you will fall in love…

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