It takes a village -- Guest Post

They say it takes a village to raise a child. I think that in some ways, our "villages" are getting smaller as the years pass. Times are changing. There is an ominous feeling that we can't - or at least probably shouldn't - trust anyone with our kids except ourselves. We are solely responsible for bringing up our own kids. We almost have no choice but to become "helicopter parents," hovering over our children, fiercely protecting them and shielding them from the scary outside world.

However, when you are unexpectedly thrown into raising a child with special needs, you quickly realize that you have no choice but to find and embrace your village, to let go, and to trust others to help your family. Suddenly, there will be therapists entering your home and working with your child. There will be appointments with various doctors and specialists. There will be thorough evaluations, spanning hours, where you will watch your child's every move recorded and scrutinized. There will be advice. Oh goodness, so much well-meaning (but often frustrating) advice.

In the midst of all this confusion and uncertainty, this struggle between holding tightly and letting go, a few kind people will shine their lights into your world. These people are your villagers.

A villager will take the time to truly get to know your child, to gain her trust, get into her world, and to meet her where she is at that very moment. A villager will genuinely laugh at an awkwardly told knock-knock joke or a line of scripting from a TV show, even if it's the 8th time they've heard it that day, because they see the beauty in your child's attempts to communicate and connect. A villager will gently encourage growth, while still respecting your child's rights. A villager will watch, beaming with pride, just as you are, as your child achieves a milestone that you may have never thought was possible.

And....perhaps it wouldn't have even been possible, without the villagers' help.

Every single day, the villagers are showing up to their jobs, but not just working for a paycheck. They are changing lives - and not just the life of the child they are helping, but the parents, siblings, and other loved ones will be forever changed by their work. The villagers may not think often about the significance of what they are doing, but it is HUGE.

To our villagers: I thank you from the bottom of my heart. My children would not be where they are today without your kindness, your patience, your dedication, and your knowledge. There is a big world out there, and our villagers are paving the way for my child to find her place in it.

To the parents of special needs children: Seek out your villagers...you will know when you find them. Trust them. Learn from them. Gradually begin to let go....and watch your child travel from his village out into the world.

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"Amber Appleton Torres" is a stay at home mother of three, the eldest two of whom are diagnosed with Autism Spectrum Disorder. After their diagnoses, she realized she is on the spectrum as well, and got her own Asperger's diagnosis. She blogs about her family's journey athttps://onebigaspiefamily.wordpress.com/

What do you picture when you think of an autistic child? You're wrong. -- Guest post

What do you imagine when you picture a child with autism?

I can tell you what I imagined.

A child who is antisocial. A child who refuses to make eye contact. A child who is withdrawn, sullen, disconnected, unaffectionate, devoid of empathy.

Which was why my first reaction when that word was brought up in relation to my daughter was to scoff. Autism? Juliette? Really?!

But she’s….so social!

And she is. From the moment she was born, that girl has radiated sunshine. People used to comment everywhere we went that she was just so happy. She was always smiling. She loved people. Not only was her personality bright, but so was her mind. She was inquisitive. She was magnetic. Well, she was just plain brilliant, in so many ways.

She was NOTHING like that image I had in my head of an autistic child.

Most people, before they have a loved one with autism, have that same image of the withdrawn autistic child in their minds. Sadly, many health professionals do as well. That image is the biggest roadblock getting in the way of autistic children gaining the proper diagnosis and support. I can’t even tell you how many times I have heard parents recounting stories of how they went to their doctor, concerned about their child’s development, only to be waved away and told their child couldn’t possibly have autism because he/she “made eye contact” or appears to be “too social.” Some parents are satisfied with that response, and the child continues to struggle through life without help. Some parents continue to fight for YEARS before finally getting their child diagnosed and accessing supports and resources. We were very lucky that we found a wonderful psychologist who easily diagnosed Juliette, then Lennon, and then myself. All of us make eye contact and are quote-unquote “social,” by the way. Not one of us looks anything like that image you’ve got in your head.

Look. That image….it simply doesn’t exist in real life. That autistic kid who is completely in his own world, refusing to look anyone in the eyes under any circumstances…..doesn’t exist. At least, I’ve never met him. And I’ve met my fair share of autistic children, on both ends of the spectrum. Beautiful, bright, curious, magnetic, sensitive, funny, and gosh-darn adorable autistic kids who are literally the direct opposite of what I had imagined. They are completely “normal” looking children who are so full of life, only their brains are just wired a bit differently.

When my son, Lennon was a baby, I knew he was different right away. He was the most wide awake, alert newborn I had ever seen. He cried a lot, and he almost never slept. He seemed unable to shut his brain off. His eyes were always wide open, taking everything in. He hit all his developmental milestones early, especially speaking. He talked like a miniature adult, and he was so incredibly intelligent. He was a challenging child in many ways. He was very strong-willed. He knew what he wanted, and he did not respond well to being told “no.” When he set a goal, he would never give up. He had traits that we admire in adults, but are challenging to deal with in children.

Somewhere along the way, in my obsessive searching for answers as to why my child was so different, I came across the terms “high needs child” and “spirited child.” He is both of those things, but it would be six years before I would realize that he is also a child who has Asperger’s. When he was a toddler, I got the book “Raising Your Spirited Child,” and the author describes spirited children as being “MORE.” More intense, sensitive, perceptive, persistent, and energetic than a typical child. What a perfect description! While the book isn’t about autistic children directly, many children on the spectrum would definitely fall into the category of spirited as well. Lennon is, and always has been, more. He may be small in stature, but he is larger than life in personality.

Let’s go back to the image of the autistic child in your head. Picture him. Do you think of that child as being MORE? Or LESS?

I am telling you….forget about that image, because that child doesn’t exist.

Also, forget about the eye contact thing. It should be taken out of the equation, as far as I’m concerned. Yes, some people with autism struggle with direct eye contact (usually more often in unfamiliar situations with unfamiliar people. Most find eye contact easier at home, with their families). However, it is just one of MANY factors to be considered when diagnosing a child. A child can have flawless eye contact and still be very much autistic. And yet, somehow, we have chosen to latch onto this one small trait as THE definitive trait of autism. If a child makes brief eye contact at a doctor’s appointment, they are immediately dismissed from the spectrum? C’mon, people, we can do better than this. We are failing our children because we can’t get over that stereotypical image of the sullen, autistic child with the downcast eyes; the child who is somehow “less” than other children. We imagine that they are less social, less connected, less emotional, less intelligent, and less empathetic. We need to consider that we may have this all backward. These are kids who experience everything more intensely: sensory information, emotions, empathy. Their nervous systems are more fragile, and they are much more easily overwhelmed. Because they are MORE, they have more needs and require more support.

Most importantly, they are human beings. They are individuals. Generalizing all autistic people as antisocial is doing them a big disservice. There are introverted and extroverted autistic people. There is as much variation among autistic people as there is among neurotypical people. I see this firsthand with my children. Lennon and Juliette are both diagnosed with autism, yet they are so different from each other. They each have their own unique strengths and challenges. Lennon has impressive verbal skills, and he is very driven to achieve his goals, but he sometimes has trouble going with the flow. Juliette struggles more with communication, but she is more adaptable to change and more conventionally “social.” Again, neither of them is anything like what I imagined an autistic child would be like. That was the hardest thing for me to wrap my head around when Juliette was diagnosed. She just didn’t SEEM autistic to me.

But then I realized, I had been wrong all along about what autism looks like. I’ve learned to replace the incorrect image in my head with images like this, of my beautiful, creative, smart, kind, loving, and MORE children.

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"Amber Appleton Torres" is a stay at home mother of three, the eldest two of whom are diagnosed with Autism Spectrum Disorder. After their diagnoses, she realized she is on the spectrum as well, and got her own Asperger's diagnosis. She blogs about her family's journey athttps://onebigaspiefamily.wordpress.com/

Gazelles and Elephants: Fitting in at five years old -- Contributor Post

Pi and Phi are 5 now. They attend Kindergarten (two different classes so they can both shine their stars individually as bright as possible). They both insisted that they are old enough to ride the bus to school, and because the bus is actually available to them now that they are in Kinder, I agreed. So they ride the bus to school every school day morning.

I drop them off and watch them interact at the bus stop with the other kids. They’re the only Kinder kids in our little neighborhood, so mostly the big kids are leaving them alone and letting them run around like animals waiting for the bus.

Run around they do, too. Every single day, they drop their packs in the bus shelter and then have races from one sign to the other. About 200 feet of a race they do over and over until the bus gets there. Squealing, rambunctious, and overall dorky. Phi runs with his hands clutched high to his sides, a bit like a T-Rex. A smile of pure happiness. His feet hit the ground with the strange, awkward, delicate gait so familiar to other parents who have children on the spectrum. Toes pointed down, still somewhat clompy somehow. Like an elephant doing ballet. So happy.

Pi’s arms are thrown back and her clomping hits whole foot down, her face also has the same smile. So happy. She is a gazelle.

The other kids are mostly silent while Pi and Phi enact these daily races. Pi and Phi encircle them, run between them, around them, near them. You can see the other kids pull back, stare at them. I want to tell Pi and Phi to chill. Be cool. The kids are judging them. I keep my mouth shut. One kid does a mock tiptoe of Phi to his other friends, and they cover their mouths to smile behind their hands. They know better than to laugh where parents can see them. Phi doesn’t notice, just keeps running. Keeps being happy.

I want to scream at these kids. You think it’s awesome that you can run better than him? Running is hard for him. He’s a different animal. You are gazelles, and he is an elephant. His squealing trumpet of glee comes from a differently shaped throat than your own. Is it such a point of pride that yours was shaped different? Do you work for hours to make your gazelle throat shape the sounds that all the other gazelles make?

No he does not have grace. What he has, instead, is hard work. He has perseverance. Thank goodness that’s part of the package with Autism. The same thing that makes him line up puzzles for hours is what makes it possible for him to make words that others understand. He works past the point of wanting to stop. I am furiously proud of his words.

I remember his testing, and them asking us for a list of his words. For a week we tried to put together even ten words that he said at the age of 18 months. Duck. Ball. … Umm.. Daddy? We struggled to find any words that he had actually said. Now, at age 5, his vocabulary is huge. He inherits the wide breadth of spoken word that his father and I use daily, and it shows.

But the kids at the bus stop don’t see that he is a hard working elephant stuck in the land of the graceful gazelles. They see that he is not part of their herd. They close ranks.

So he runs with Pi. Pi who doesn’t care, yet, about gazelles and elephants. All animals are different to her. She takes it in stride.

I want the other kids at the bus stop to see what she sees. I want them to feel the pure joy that he feels.

I’m proud of my mismatched animals, and so furious at the herd that closes them both out. I know that in their classes there are other mismatched animals, and they find them and befriend them. The herd at the bus stop is not their whole world of experience, but only a small window onto it.

I also know that the herd at the bus stop is going to grow. That as they get bigger, it will become more and more evident how different they both are to the herds they encounter. Him for his everything, and her for her acceptance of these things and for her own differences. That the ruthlessness of peers will run their world for the next fifteen some odd years. There is not a thing I can do to change it.

I know that they are going to spend their lives collecting their own herds of mismatched animals. I hope they do not spend too long trying to assimilate into herds that are not their own and do not accept them. I also feel sad for the limited scope of the herd of gazelles at the bus stop. They have not yet learned the value of the different animals. I hope they learn it someday.


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Polly is a twin mother who writes at Pollychromatic. Check out her blog.




 

Caring for Special Needs Pets -- Guest Post

Today, Jill Redding from Pianissamma shares a compassionate story about her new pet and what to do with a special needs animal.

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Atticus the Cute! Photo credit: Tejaswi Kasturi

Meet Atticus. He’s a three-month-old kitten who is as cute as can be. To the casual observer, he might seem like any typical kitten, but take a closer look. Atticus is not a typical kitten at all. He is considered a special needs pet.

Just over a month ago, Atticus along with his mother and one of his littermates were trapped in a crawlspace when a fumigator tented a house without removing the cats first. The trapped kittens survived, but their mother died during the fumigation. Four other kittens from the litter were not caught in the tenting, and they are healthy, but feral. A friend recovered the two injured kittens, and took them in for veterinary care. It was then that she was told that his left paw was paralyzed, and would remain so forever.

Upon closer inspection of Atticus’ X-rays, the vets noted that his elbow was broken and fused together possibly before he was born. The other recovered littermate had a similar injury, same prognosis. Yet, it is not an uncommon injury with cats or dogs. Many an adult pet can get similar traumatic injuries. In the old days, it wasn’t heard of to just put the animal down when injuries like this happened. Today however, the common treatment of this type of injury is amputation, and the pets recover, going on to live full and healthy lives.

Before you ask, “Are you sure?” it should be noted that for Atticus, amputation has already been recommended by several different veterinarians. It will not reduce his quality of life at all. More likely, it will make it better. It will reduce strain and muscle fatigue on the shoulders and right front paw. He will not become less agile, as he already does not use the paw.

Atticus won’t be an outdoor cat, but that isn’t a loss. Indoor cats don’t have to worry about cars or coyotes. And honestly, Atticus isn’t interested in going outside anyway. He prefers a warm lap to sit on, or a cozy corner to curl up in. With a child and two other cats to play with, Atticus is never bored.

More, there are many other dogs and cats just like Atticus waiting for the perfect forever home. Unfortunately, many pets are looked over for adoption if they appear any less than perfect. Elder cats and dogs are left to languish in shelters in favor of puppies and kittens. Injured companions are seen as dead weight, even if they are able to fully recover. Yet while they may seem imperfect to the casual observer, they are almost always so full of love.

Since Atticus came into our lives, we have learned that not only is he sweet, but he’s very resourceful. While we did have to spend a little longer showing him how to use a litter box, and how to properly groom his face after eating, he figured out how to do so within the week. He even got a little help from one of our elder pet companions. More, he functions quite well with just the three paws.

I wanted to introduce you to Atticus, because I want to appeal to anyone hoping to adopt a pet. If you wish to welcome a companion into your home, that’s wonderful! Please don’t discount a potential companion because they lack a limb, have a disability or because they’re older animals. Rather, consider this. They will love you, for who you are- a companion. None of us are perfect, but we are unique and wonderful individuals. As we conclude “National Dog Day” today and await the arrival “National Cat Day” in October, I hope you will celebrate all dogs and cats with me.

What It Truly Means to Be Poor, and How We Get There - Guest Post

I've been following the stories of the woman who wrote a Huffington Post comment about what it means to be poor from afar. I first read an expose of her, and shared it, not having done much research. The expose has holes, and lots of problems of its own, including harsh judgments that are not necessarily truth, but conjecture. The woman's own story touched many hearts, won many dollars, and in turn, when the possibility of it being fake came out, turned many people off in anger. A close friend of mine has written a response to this back-and-forth. At first it looks like a derailment of the original woman, but it is not. Poor is poor (or so they tell me. The closest I got to it was 2008 when I had to go on Medicaid and WIC to feed and get medical care for my infants who were born prematurely right as the economy crashed, we were unable to pay for our now-underwater house, and my husband lost his job. Fewer than two years later, we were back on our feet, thank God, and these days, I do shit like make cookies to Christmas carols. This is not my story, but it is a story of many.)


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You’ve read it by now. Everyone has, I think. It’s received national and even international coverage. A woman, who may or may not have struggled monetarily in life at one point, fabricated a heart-wrenching scene of what it’s like to live at and below the poverty level, down to rationalizing how it affected her decisions to eat, sleep, smoke, raise her children, and steer her life. It was poignant and well written, and it touched on a number of good points.

See, there were giveaways in that little essay that niggled at me, though. Things that niggled at a lot of other people, too. The connotation that poverty is always dirty, framed in a way that is recycled from the mouths of those who have really never been inside it, right down to the same language. Then there was the colorful diatribe about the roaches, and their little toothpick stakes, where she impaled them (by hand,) like victims of Vlad the Impaler. I live in the South, folks. If you’ve never been, we have a special brand of demon roach commonly called the Palmetto Bug. They’re big, they fly, and they’re fucking terrifying. More so than anything, they are in ALL HOUSES IN ALL THE PLACES, and they’re FAST. No chance in hell you’re going to sit on your floor with some toothpicks and impale those bitches. They will dart or fly across the room before you have a chance to ready your spear, and then they will laugh at you.

I was hurt when her hoax was brought to light. I was outraged. I felt for her; she was “one of us.” She was trudging through the shit like the rest of us, she was part of this brotherhood of hard knocks and occasional hopelessness. Or at least, she led us believe she was. But instead, she was privileged more than most, with a wealthy family, a boarding school early education, and a career in politics that started at a young age. She defended herself by saying that her essay was misunderstood, that those reading it saw what they wanted or needed to see, that they were obtuse. And she defended the outpouring of support that she soaked up, both monetary and emotionally, by iterating once more that people chose to act based on how they interpreted it. It was no fault of her own, but she was certainly not going to turn down any “help” anyone wanted to offer.

Well, folks, I want to do you a favor. I want to paint you a real picture of working poverty. I want to show you what poor decisions get made every day and why, and I want you to understand that this time, it’s real. Because I’m NOT doing this for pity, support, or donations, this will remain completely anonymous. The writer is a known blogger and guest blogger, but I choose to keep my identity well hidden, because more than anything, I want to show you what it’s like to live a day in the life. Shit like names and ages and a gender here or there have been altered. Really, I don’t want you to know who I am.

So, how does one end up poor? Or working poor, in my case? Well, I’ll tell you. It started young. I had young parents that struggled to make a life for their kids. For a long time, we bounced from shit hole to shit hole, always just evading eviction, while I pretended to not notice that there were days when dinner was spaghetti with canned sauce for days in a row, pretending not to see the terror and the sadness in our parents’ eyes when they laughed off our requests for trips to theme parks or for ponies or new bikes with the excuses of “That’s an awfully big request, let’s save it for an awfully big occasion.” (I was the oldest by seven and nine years, respectively.) I knew they wanted nothing more to do those things for us. I knew they simply couldn’t. I knew that they didn’t want to work from dawn to dark to try and make ends meet, I knew they’d rather be home with us, but I also knew that as much as they supported us, it was crucial that I support them, too. So I smiled back, and made light of the worries that trickled down my way. They tried desperately to shield me from it, but I was precocious and observant. If nothing else, it helped shield the littles; I could reinforce the ruse so that they, at least, didn’t have to have any inkling of how bad things really were.

At one point, finally, they made it out of the rut. They bought a nice house, upgraded to cars that worked. Took jobs that didn’t have them working themselves to the bone, where they could spend evenings making dinner and doing yard work, going to our extra-curricular activities that they could finally afford. I knew poverty at a young age and for many years, but we had moved beyond that.

So how, then, do you go from being an average, now-upper-middle class family, to a single mother living in that very same house, where you’ve all become working poor in spite of multiple incomes and at least two people with promising, bordering on prestigious careers?

Well, I’ll tell you how. It’s a secret now, so don’t go blasting it around everywhere. Are you ready? Here it is: Shit. Fucking. Happens.

I made it through high school, and due to a self-destructive and rebellious streak, I decided fuck college. I was going to do as many drugs and fuck as many people as I could. I blew through job opportunity after job opportunity, some of which would see me today working in very, very cushy research positions with my education paid for, because I got bored easily and was really convinced I was bullet proof.

I found that even though I bounced back and forth between being on my own and my parents support, I could do okay for myself.

Then came baby.

Alright, alright…that happens. I had unending support from my family, and at that point, we were still doing okay. They hadn’t made it to the jobs they have today, and my mother was furthering more her own education. Things were tight; my siblings were in high school at that point, and while we had to budget, we made ends meet. I took odd jobs here and there, and for the most part, got to stay home to raise my baby.

Still not poor. Still not experiencing poverty.

Then shit happened again. That education my mother was furthering? Her degree left her floundering in a temporarily saturated market, when the economy was falling in a tailspin down the toilet. My father, with his cushy job with tenure? Yeah, that whole market and economy thing struck his sector pretty hard, too.

At about this point, my teenage sibling, during a very exciting senior year, made me an aunt.

So picture this. A husband and wife. Three children, one of whom is an adult, the other two are teens. A two year old grandbaby, and another grandbaby on the way. Oh, and now joining our cozy abode is the other newest addition to the family, the daughter in law.

That’s when things became reminiscent of my childhood.

Enter me becoming very, very ill. I could not work. I could not pay my portion of anything. I was in and out of the hospital. I had tried to go back to school, and that effort was decimated. It’s hard to go to class when you’re possibly dying here and there.

Enter another couple of years of fluctuation. Second child and second grandbaby and daughter in law move out, enjoying their “wedded bliss” and their go at being self-sustaining adults.

At this point, in spite of having a roof over my head, I was personally at the poverty level. My own bills were going unpaid, some of them with dollar figures in the hundred thousands because I spent many of those hospitalizations uninsured. My ability to provide for my child was severely limited. My parents helped, of course, but there’s only so much money to go around. Jobs were hard to come by for anyone anywhere, and no matter what, being an adult means that even if people think you have a free ride, there’s no fucking free ride.

Well, back to the family dynamic. Darling sibling goes through a messy divorce. Back home again, where BAM. My nephew, who had always been special needs health wise, has his health spiral out of control. My child’s special needs rear their ugly heads. Suddenly, an entire family who was holding their own, albeit with a very tight budget, suddenly meets the poverty level once more. My sibling could not work, as he was caring for his gravely ill child. I could not work, as I was caring for a gravely ill me, and my child who was suddenly higher maintenance. My youngest sibling was struggling to make sure that her future remained bright.

I had to bite the bullet. Welfare. I had been on WIC, that kind of went without saying. But now the monsters of food assistance and Medicaid had to be confronted for everyone’s wellbeing.

And that worked for a while. It was the band-aid we needed to get through it. Well, it was truly just a band-aid.

I soon found the love of a man who turned out to be a literally homicidal psychopath, and like in every love story, I got pregnant. BAM. Shit has happened again. Back with the ‘rents. Now the body count is: Two parents, two adult children with two-almost-three grandchildren, and one almost-adult child who is still determined to beat the odds and make something out of her life.

Ohai, welfare. Nice to see you again.

Do you see where this is going? Can you see the pattern? Nobody fucking wants this. Nobody wants this to be their lives. It can happen to anybody. It can happen to those who plan best, it can happen to those who are stupidly convinced they’re bullet proof.

And the poor choices? Well, yeah. We do fucking make those. Because when it comes down to it and you are working any job you can get at any shift, just to make sure that the lights don’t get shut off, or there’s gas in the car to get the kids to school, and doctor appointments, and keep diapers on their asses and clothes on their backs and shoes on everyones’ feet, you say fuck it and you do what you have to do to keep living. You DO smoke those cigarettes to give you just a couple hours more energy. You DO indulge in those bottles of Three Buck Chuck wine, just to find some escape. Your foods are processed because they’re cheap, and if you’re smart, you manage to supplement with the freshest you can afford, but damned if that’s possible all the time. And you sure as hell aren’t buying organic. Trader Joe’s? HAHAHAHAHA. More like Save-A-Lot and the farmer’s market.

My second child was born very, very, very sick. I kept that baby alive through sheer willpower, or so the specialists all tell me. There will be lasting effects from it, and she has a neurological disorder that brings its own can of worms. This is something that, if I had a good job, or a husband who had a job, or even had a family that was slightly less strapped, wouldn’t be that big of a deal.

This is a child who cannot go to day care. This is a child whose dietary needs for the first two years were the cost equivalent of feeding the entire family beforehand. That, combined with her brother’s progressing special needs (and also special diet, and medication needs,) means that we had finally come full circle and hit Rock. Fucking. Bottom.

Veering away from the entirety of my family for a moment, let me show you what this means for me. Just me. This means that my days are spent shuttling back and forth between specialist appointments for both children, and multi-hour, multi-day therapy sessions for one child. Trying desperately to potty train, trying desperately to communicate. Learning sign language and turning around and teaching it. Never leaving her with a stranger, because there’s no way for her to tell me “Mommy, someone is hurting me.” Monitoring another child for behavior changes and seizures. Finally finding a job where I can pick my own hours, move my schedule as needed within limitations, and get paid a wage that even if it were me alone I wouldn’t be able to live off of. It means special diets that are expensive, it means medications that cannot be missed, no matter whether or not I have the money to buy them. It means begging friends for help, praying that nothing goes wrong with food stamp and Medicaid re-certifications, and always, always, always wondering where the next dollar is going to come from.  It means spending a few precious hours with both kids in the afternoons before I go to work, where I get off at midnight, come home and take care of as many things as possible, crash for a few hours of restless sleep, and begin it all over again.

Once upon a time, I dreamt of being a perpetual student. All I wanted to do was study and learn. Sometimes I decided I wanted to do veterinary research. Once, I dreamed of pioneering studies on HIV/AIDS.

I have not even finished a full semester of community college. All thoughts of getting a “real” job are pipe dreams, because when you have a child who does not speak, you cannot simply put them in day care, no matter how free it is, because like I said a moment ago, there is no way for them to tell you “Mommy, someone is hurting me.”

This. Is. Poverty. This is not being a welfare queen. This is not being lazy. This is desperately wanting something more, and never being able to get a step ahead to achieve it.

So where does this leave my entire family at this point? Well, my nephew is doing much better. My sibling got a very promising job with a company that paid well and offered benefits. He found a woman he loves, and they were set to move out and begin anew. Until that company folded. And another baby is on the way.

There are nine of us in this house right now. There will be ten in a few short weeks. Some of us are healthy, some of us are not. Some of us are special needs, some of us are trying our damndest to make it out and succeed. Two full-time careers, one part time job with not even a half-living wage, and one quarter-time job in retail in a college town. There is Medicaid all around, and foodstamps to supplement.  $340 to try and feed a household of ten. It is not uncommon for us to go a few days without phone service, or a night without electricity, because medication needs to be bought, or the price of the supplements for one kiddo or the other has gone up due to high demand and low production. It’s not uncommon for vehicles to go unrepaired because fixing them would be the difference between having a car to drive and eating for two weeks.

This is poverty, people.

We’re not dirty. We don’t impale roaches and lament over crooked teeth that cause us to be passed over for clerical positions or spots in restaurants as wait staff. We paste smiles on our faces and we make ends meet. We swallow our pride and ask friends for money to buy milk and bread when pay day is three days ahead of us and we’ve fallen just that short, and we pray that this friend won’t do what the last did and look you in the eye and tell you no, that they think that you’re just using them when you could surely be doing more to help yourself, or you should surely have someone else to turn to, even if you’ve made sure every time you’ve had to ask that you’ve been vigilant about paying them back with speed and some other small token of gratitude.

 We hide the fact that the power is out from our neighbors, and we hide the fact that this is the third night of spaghetti. We make sure our young children, the second generation, goes through life never ever coming close to comprehending that we had to exchange doing some bookkeeping so that they could go on that field trip, or in my case, in my very lowest moment, pity-fucking so that there were dry diapers for the baby who, because she was so sick, needed to be changed every five minutes or else the diarrhea would eat at her flesh and leave her burned and bleeding.

They will never know that there was a blow job traded for that trip to the pharmacy to pick up their medications.

The rest of the family will never know about that time that there was a motel room with ropes and a gag, and a crowd of cameras, and the blood and the bruises for weeks, just so I could make sure that there was food to go around for everybody, not just the kids, and gas money for us to wake up and start it all over, again and again.

Poverty is not waxing poetic about burning the candle at both ends and lamenting that you don’t cook because you’re afraid that it will make things that are already dirty even more so. Poverty is dealing with it silently, never letting them see you cry, scrubbing the counters until they gleam. Why? Because when nothing else in your life shines, at least that fucking vinegar and baking soda will get the coffee stain out of the grout and remind you that something, somewhere, somehow, can be under your control, and you can make that one part of your life where everything else seems tainted and dirty, covered with despair and worry, finally come clean.

When you’re poor, it’s not your house or your clothes that are dirty. You don’t have poor hygiene. It’s your soul that becomes covered in filth, because that despair and that terror of never knowing what’s coming next, that desperation to climb out of the pit and never finding a foot hold…it all leaves a layer of grime that just builds up. No amount of showering in scalding hot water seems to ever make it go away.

If you’ve read this far, I congratulate you. It can’t have been an easy read. It sure as shit wasn’t an easy write. Please, if you take nothing else away from this, just…be thankful, and think twice about someone you might otherwise write off as “obviously not having it that bad.” Sometimes we become true masters of disguise.

 

Parents Aren't Causing Autism. Quit It. - Contributor Post

Janel over at Pollychromatic takes on some of the more persistent autism myths.


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You want a rant? I’ve got one.

This was shared on my feed and I pretty much had my brain spasm all over the place. Here’s what I said, try to ignore the twitching anger:

I can’t with this. I mean, I can’t even read it. I mean, I can’t read it and continue to not be seriously heated.

You want to celebrate diversity? Here’s one for you: people on the Autism Spectrum? They’re people.
Here’s another shocker: not all of them are “difficult to reach.” 

Autism is a spectrum “disorder.” It’s a collection of learning disabilities, and neurological conditions. Not all of them present, or at the same levels with all people on that Spectrum.

We haven’t really delved very far into where ASD comes from as much as we have a new scare every month about what’s causing it, and how we’re being bad mothers if our children are affected by it. As though, somehow, we are the sole gatekeepers to our children. As though they are our possessions, and everything that happens with them, or everything they are is a reflection on us. 

This is a tool that has been used to beat women for centuries. It is a tool that women use to beat other women. It is a tool that women use to beat themselves.

Early in the history of ASD as a disorder it was believed to be caused by mothers who were too cold to their children. Not surprisingly this was during much of the early 2nd wave Feminism when women were beginning to discover identities outside of only being mothers. 

You want to have a career, or a life outside of the home? You’ll cause your child to be irreparably damaged. Now take off those shoes, get back in the kitchen, and do your duty to your family, or else your children will suffer, and it will be your fault.

Much has evolved since then, and we have come to learn more, but so much of that knowledge is a chaos of continued blame sourcing that seems to end nowhere other than hocus pocus faux scientific “medical” quackery.

What do we know? There seems to be a genetic link for Autism. It runs in families. 

We know that the numbers of those with ASD have likely been underreported for decades. So many people lay in the wings of Autism Spectrum and were so “lightly” affected that they simply were never reported. They were considered late talkers. Exceptionally picky eaters. Late bloomers. Shy. “Weird.” Etc. Parents simply never understood what they were seeing and never reported it if they did suspect. Perhaps fear of the stigma of a diagnosis that would follow their child around for life gave them caution. More likely that they just truly did not know what they were seeing. “Uncle so-and-so was a late talker, and then he went on to be successful,” went family legend and the friendly advice of neighbors. And so they put their suspicions on hold. 

Lord knows the backlash that I incurred when I put my son in Early Intervention at age 2 was bad enough. I can not imagine how bad it would have been if I had not had the wherewithal of my own knowledge and the courage to listen to my own inner voice AND the luxury of time that comes with being decidedly upper middle class to back me up. If I had been fighting the daily grind of a 9-5 (or a 3-11 for that matter), and trying to put food on the table, keep the gas turned on and water running, and the kids in clothes? Would I have fought so hard? 

It’s pretty hard to say.

I’m pretty insulted by this whole essay and it’s tone. I’m being frenetic and chaotic in my refutation of it.

What I have to say?

ASD isn’t the end of your child if your child has it. Not all ASD looks alike (my son could not be more sweet, more open, more funny, more loving, or more empathetic toward others). Mothers aren’t “causing” Autism.

Continuing to feed any of the three beasts I have named right there? Not. Very. Awesome.




 

Expecting the Unexpected - Contributor Post

Kim Wright who blogs over at No Progress Without Pain is one of the strongest women and mothers I know, full stop. She has ridden through tough times, smiled at the good ones, and braced for more. This post is just one of the reasons why she should be president of the world.

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All my life people have told me I need to expect the unexpected. I think I’ve been told that so much it might be at the root of a pretty serious anxiety disorder that I have. It’s taken me a long time but I’ve finally realized you can’t do it. There’s just no way to expect the unexpected.

To be completely honest with you there’s very little way to expect anything in life, and just when you think something is a constant it’s my experience it can change on a dime. I make a habit of trying not to make promises to my daughters. I guard our plans with careful wording. Plans fall through, things change, and they certainly don’t always occur, as we desire them and we have to adapt and overcome. Simple things like play dates change all the time and if I utter the words “I promise” it’s a death sentence to the plan, you can almost be sure it’s going to go up in flames. I don’t know why that is, maybe I just have bad luck, but that’s my experience and I’m a little sick of working myself up and my family up when things don’t go as I plan.

I have a special needs daughter who just had surgery. Dorothy has Conradi Hunermann Syndrome, and we travel 7 hours each way to have her VEPTR growing rods that are used to treat her severe scoliosis and breathing issues expanded. If you are interested to read more about her syndrome and treatment you can visit her caring bridge which admittedly I don’t update as much as I should. We have made the trip every 6 months minimum so when I say it wasn’t my first rodeo at planning a surgery trip I mean it. At this point I’ve lost count, but I know she has had more than 14 surgeries and she’s only 6 years old.

Her surgery that occurred last fall I planned on going easy, like others. I told our house sitters we would only be gone a couple days, I promised her such things. Just like usual when I make a promise it went up in a fiery inferno of doom, instead of a couple days we were gone more than a week. Instead of the surgery going well it went horrible. We were worried and sick and stuck in ICU beds hearing stories of “flaky bones” and bone grafting and waiting on big icky back braces that she’d have to do her first half a year of kindergarten in.

So this time around I planned for the worst. I worried and fretted and my daughters surgeon was even fairly concerned about my inability to form coherent sentences by the day before surgery. I told our house sitters it would be a long haul, and I balanced credit cards to see how much more debt we could possibly juggle because hotels and food add up. Just like that though, this surgery was the easiest one I’ve watched her recover from. No surgery trip is easy, but I really didn’t need to make it as hard on myself as I did if I had just let it be and planned like I normally plan

I could have taken a moment to breath. I could I stepped back and maybe formed those sentences more coherently, and I could have gotten a few extra full nights sleeps in and avoided being a babbling crazy person who deep cleaned every room of her house like maniac in expectation of being gone for weeks.

I really can’t plan for the worst all the time, I shouldn’t plan to expect the unexpected because the unexpected could be more terrible than I can imagine or it could be much better. Sure I have to be an adult about things and be ready to handle what comes our way without it breaking me apart but the way to do that is not planning for every unexpected scenario. I think a better way at least for me to approach plans is bending and adapting to them as they come. I’ll still guard my promises to avoid those flames of doom whether they be tantrums from missed play dates or fiery pits of financial ruin from two unexpected weeks of hotel stays.

From now on though I’m going to do my best to not try to expect the worst case. My daughter’s surgeon told me he just “takes what her body gives him and works with that.” I think that’s a good guideline for life, take what it gives you and work from there.