SPEECHLESS …

ABC’S newest addition to their “family diversity” explosion is a show called Speechless. It debuted last night and my wife and I made an appointment to watch it.

This one intrigued me because it’s about the family of someone with special needs. I have to say, whoever wrote this show knows what they’re writing about. It hit about all the beats of life with a special needs person you can hit, in a 30-minute sit com.

There’s the overbearing tiger mom who burns a swath through society, fighting for her son, who cannot fight for himself. There’s the peacemaker dad trying to keep the ship balanced and floating. The troubled sibling of the elephant in the room, sick of having his life completely dictated by someone in a wheelchair and the overachieving, youngest sibling literally running from her situation (she’s a track phenom) balance out the cast.

Along the way, we meet the usual suspects who ARE usual suspects in the life of a person with special needs; over eager teachers who don’t actually know what they’re getting themselves into; the black guy who knows exactly how the boy who can’t walk and talk feels …cause you know …he gets pulled over a lot; the well-to-do retired lady in the Cadillac, pulling into a handicapped parking space. I mean, she has the “handicapped placard” so she’s legit. She had hand surgery last year so, you know …she really IS handicapped …I mean …if you want to get technical about it. (I took liberties with her back story)

All of these things are true and then some. And as I watched this first episode play out, I could tell (by a few significant scenes) the writers of this show understood something that all parents of special needs children understand. The last people on earth who are getting “included” into the world are those people with special needs. And it’s a deeper issue than you might think.

I can honestly say that most people in my daughter’s life are nice to her. We live in a wonderful city that is very inclusive. My daughter gets many more smiles than frowns. When she reaches out and grabs people in the grocery store they usually say hello and smile …after the initial shock of being grabbed by a strange little Asian girl wears off. I honestly feel like most of our society WANTS to be nice to everyone. We feel it when we’re out with her.

But if you scratch just below that surface you always get to a dark reality. The reality is my 14-year-old daughter, left by herself for one hour, could destroy everything in a room …and herself. The reality is a city full of people like my daughter wouldn’t survive for a weekend. An entire city of people with Down Syndrome or severe Autism might be able to function …but probably not.

And every parent with a special needs child understands this reality.

Last year a friend of mine with two Down Syndrome children, sent me a screen shot of a tweet and a comment thread that followed. The tweet was of a young man with Down Syndrome getting into college. The family was thrilled. He was thrilled. And there were the standard well-wishers; people being NICE.

But the further down in the thread you read, the more of the real story you got. College educated adults were commenting publicly on how we could (and SHOULD) eradicate DS if we would simply mandate that all DS children be aborted before they were born. We have testing that can tell us what they have, in utero. And according to these intellectuals, people with Down Syndrome (or any disability, really) were an unnecessary burden on society. That burden could easily go away …if mothers would just make the right choice.

Then someone made that leap …that horrible leap every parent with a special needs child fears. Someone argued the merits of euthanizing people with disabilities. And the thread spiraled into a conversation that made my head hurt and stomach ache.

And there it is. THAT’S the thing that goes unspoken. I KNOW my daughter will be someone’s job one day, long after I cannot do that job anymore. Every day of my life I wake up and decide that ALL life is valuable. Then, I make a conscious effort to act on that belief. I HAVE to believe that. I have to FIGHT for that.

If you want to know why I oppose non-dynamic, government run institutions, it’s because of my recurring nightmare. I envision a world where my daughter is trapped in a state system. I see her at 50 or 60, after her mother and I are dead, rocking back and forth in a room full of people like her. The minimum is done to make sure she stays alive and relatively clean. She has a TV and an iPad and is attended to by some state apparatchik, collecting sick days and angling for early retirement. Maybe she’s already had three or four forced abortions because she keeps getting raped (non-verbal women with special needs have an 80% sexual assault rate). She picks at the scabs brought on by an STD. And it keeps her skin constantly infected.

Her mother isn’t there to dress her so she is adorned in whatever the state pulls together. Her hair is unkept and her surroundings are drab and institutional. And yet I know she’ll still be smiling at everyone and trying to give hugs.

At some point, budget cuts cause her medication to be altered and she starts having seizures again. Then, some math and medical bureaucrats collaborate to calculate how many seizures she can tolerate at her age, divided by how much medication can be allotted to her. After all …she isn’t contributing to society …she’s draining it. And there’s no calculation that factors in “love” and “emotion” and “life-changing giggles.” And then I see her seizing out, somewhere around 3 in the morning. Alone …between the shifts of night nurse and morning nurse. And that’s when I start to cry.

I wake up from that nightmare and set about the task of investigating private group homes, and my wife grills her teachers about what more they can do to prepare her a little better for the world. We check in with new research being done that might one day provide a cure, or some therapeutic that might mitigate this nightmare a little. We spend time with our son trying to instill in him the importance of family and the VALUE of every person. And we hope that he does actually grow up to be that billionaire he says he’s going to be, so that his sister has a personal care-giver and comfort and a wonderful life that doesn’t end the way I often envision it.

Every single person with a special needs child has some version of this same nightmare. And they fight against it every waking moment. That’s why that mom in front of you with the “wheelchair on board” sign sometimes isn’t as bubbly and nice as you’d like her to be and she might not care all that much that Starbucks messed up your order. That’s why that dad is always hitting you up for fundraising and charity runs and being that guy you hate to see coming. Because, we’re not just trying to help our kids sell cookies …we’re trying to re-create the world for them.

What I love about the show Speechless is that it does touch on these issues all parent/care-givers face every day. It shows us shades of some of the people we encounter. The student body that is trying SO hard to be nice, they want to make our kids “honorary class president.”

Those types of things are sweet and we always appreciate the wonderful families who go out of their way to make our daughter feel included.

But after the grand gestures at the high school are done. After everyone has been NICE to my daughter. After we as a society have achieved the proper mingling of the races and orientations, we have to decide what kind of world we actually want. What are we going to value? Really value? Are we going to just waste our time making sure the class picture LOOKS diverse? Or are we actively building a world for every individual? Even those with special needs?

Are we going to simply try and eradicate the “disorders” or is there value in those people who cannot express as we can? Right now …not cured …just as they are?

Finding the value of someone with Down Syndrome or Angelman Syndrome or any other syndrome, requires a belief in the unquantifiable. You can’t just check the diversity box of color and gender special needs and then decide something is diverse. For you to know my daughter’s value you have to get to know HER, not just know that she’s Chinese (which is totally inconsequential) and has Angelman Syndrome (which I wish were inconsequential). Getting to know HER will make you understand how important a life is …how important every life is.

I don’t know if Speechless will do well. But I hope it at least lets the rest of the world peek into a place that is very often forgotten.

For families with special needs children, it is not forgotten. It is lived every second of every minute of every hour of every day.

R

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8 thoughts on “SPEECHLESS …

  1. I stumbled across this blog by way of a friend’s facebook post and it made me cry. I cannot imagine being a parent having to live that nightmare of constant worry. I want to be clear in that I am NOT calling parenting a child with a disability as nightmare. The constant worry you feel is what I understand to be the nightmare. I spent most of my adult life serving adults with developmental disabilities until I was diagnosed with an autoimmune disorder and couldn’t physically handle the challenges that come with some disabilities. My heart lies with the people I supported and I would have done that “work” for the rest of my life if I was able. Please know that, in the event your daughter has to be in a group home or facility, there are many people that care for and love their clients as they would their own family members. I have worked with some really great people that put every ounce of effort they have into making a better life for people with similar abilities as your daughter. There are a lot of problems, I don’t deny that, but there are also a lot of people who do everything possible to create safe and loving places for the folks that need care. Please know that and also know that despite what any ignorant ass says, your daughter is worth love and life and you are doing a fantastic job of being the father she deserves.

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  2. Regie, you always speak the truth and you had me at hello, no you had me Speechless. You didn’t miss a beat and neither did this show really. We taped so we could all watch together. I especially love that you just get it and why wouldn’t you. You and Yolanda have lived it as well. Always so wonderful when you meet those that do and there are many beautiful people in this world. As a Single Mom, I loved what you wrote about different versions of the same nightmare. I certainly have a special love for all children with special needs and their families. Thank you so much for sharing and for helping others to see the world a little differently. Getting to know that person and our children individually matters so much. That truly does make them unforgettable, if they will take the time to know them. Thank you. Love, Penny, Mom to Madonna, Deletion + Angelman Syndrome

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  3. I have never read your blog before, but a friend brought it to my attention on Facebook. Your article on Speechless is hard-hitting and gets down to the nitty-gritty. I kept thinking “Yes!” as I was reading it, “That’s it exactly!” Really enjoyed your thoughtfulness and your writing. Wish I could express my experiences as an AS parent that well. Thank you for sharing!

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  4. I am the mother of a 6 yr old daughter with Special Needs (autism). We got a late start due to my having 3 miscarriages prior to her. We were 40 and 46. After I had her, due to complications beyond anyone’s control I could not have more children. My sister has no kids. My sister-in-law has no kids. She has two cousins that live 400 miles away. I share in your nightmare.

    But that said, I have to tell you about my Aunt Francis. She was the oldest of 10. She was totally non-verbal and back then they didn’t have inclusion. My grandmother kept her home with her. The state found out and she was taken hundreds of miles from home and institutionized (stick w me there is a light at the end of the tunnel). With my grandparents being poor farmers w 9 other kids they never got to visit Aunt Francis. Those 9 children grew up and my grandparents have been gone for decades. They opened up a nursing home that would take Aunt Francis near her home town. Every weekend the 9 siblings (now grown, married and w their own families) would get Aunt Francis and she would stay w them on weekends and experience life. Slowly the 9 siblings were passing away but not Aunt Francis. She had actually been well cared for and was in good health. One day we had a family reunion and Aunt Francis was there. She was totally non-communicative and when I spoke to her she just seemed to stare faraway. When they served the meal. A plate was put in front of Aunt Francis. She didn’t even seem to notice. But all of the sudden she pulled out a rosary from under her dress that was around her neck. I said Mom what is she doing (we were all Baptist) and Aunt Francis started mouthing a prayer under her breath. My mom said well I guess she is Catholic! As it turns out not only was she well cared for but she had even (somehow) found religion and my heart was overjoyed!

    So I am telling you all of this because Aunt Francis outlived most of her younger siblings (well in to her 80s). And my grandparents had been gone for 3-4 decades) but Aunt Francis was well cared for. We do not come from money so that was not there to help. But I want to give you (and me) hope that our daughters will live and be loved like my Aunt Francis.

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  5. I haven’t seen Speechless yet but I’m going to check it out on the network’s website and stream from there if possible. I’m the mom of a 16 year old on the Autism spectrum. I’m also a CNA on a busy medical unit at the hospital and I’ve cared for several Angelman’s patients. When you’re the parent of a child with disabilities, the future can be terrifying. The here and now is always HERE and NOW and you can’t turn off the double checking and second guessing. I hope they do well to show the reality of life inside families living it. Now I’m off to figure out how to subscribe to your blog, and then find where I can watch that show. Thanks!

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  6. […] Speechless… … at Regie’s Blog   I have enjoyed the few episodes I’ve seen of the new show, “Speechless” about a family with a special needs son.  It’s funny!  So I was especially intrigued to read this father’s view, who lives the reality of parenting a special needs child every day.  And more than the show, a peek into their life. […]

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  7. I love the show Speechless. My mom asked me why and I said it was a sweet show. The love and care for this child and all he gave to them as well was heartwarming and such an awesome example of how every life matters. We all can be ‘inconveniences” to those around us, but truly living is caring for others and not making life all about yourself. Thanks for sharing your story.

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