Why I Want My Son to Know the Reasons I Cry

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I have a beautiful, perfect boy who has autism and I want him to know how I feel about him, so I wrote this letter.

My Dearest Son,

I want to clarify some things. Every time you saw me tired, every time you saw me cry, every time you saw me worry and every time you heard me ask “why”… I want you to know that it wasn’t you, my perfect child.

I have had many days were I was exhausted and I have cried many tears. I have spent many nights worrying and many moments asking “why” but again, they weren’t because of you, my sweet boy.

Then why, you might ask? The answer is simple…

The world still believes in old myths.

The world has prejudices as its guide.

The world has fear as its shield.

The world hasn’t learned true acceptance… yet.

I am tired of having to explain how you’re not broken.

I cry because people see you as less than.

I worry because I won’t always be there for you.

And I ask why… why can’t people just believe in the beauty of autism.

Autism is nothing to fear or pity.

Autism isn’t a disease or an adverse reaction to a vaccine.

Autism isn’t weird or something to be cured.

Autism is just a different way of being, and if the world could just stop for a moment and truly look at autism with clear eyes… they would see what I see.

A beautiful child.

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To the Insurance Company That Said My Child Has ‘No Restorative Potential’

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Dear Kaiser Permanente,

This afternoon we received your letter informing us of your decision to deny our 6-year-old daughter occupational therapy because she demonstrated, in your words, “no restorative potential.”

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This was quite a blow. Not the part about denying OT (at this point, denials from you are a dime a dozen, no offense). If our plan doesn’t cover OT, we accept that and will figure something else out. But that’s not what your letter said. You said the reason she has been denied OT is because she demonstrated no restorative potential… huh, that’s different.

That’s subjective. That’s a decision someone (unknown to us) makes based on some matrix (unknown to us), using selective data (unknown to us) about our daughter to decide whether or not she has restorative potential (which honestly, what that even means is pretty much unknown to us).

And you decided she does not.

So this isn’t actually about the coverage we should get through the plan we pay for. This is about you trying to play God by making judgments on the value of our daughter’s life.

While you clearly deem yourselves knowledgeable enough about our daughter to determine she has no restorative potential — you also clearly don’t know our daughter.

You don’t know the girl who is a survivor and fought twice to stay in my womb before she even reached her 20-week ultrasound. You don’t know the girl who couldn’t suck when she was born but kept trying to choke down milk so she could live and grow.

You don’t know the girl who started having hundreds of seizures a day when she was only 6 months old, whose brain was so overwhelmed with seizures she shouldn’t have been able to do anything but be a zombie and yet would still smile for her daddy.

You don’t know the girl who went through medication after medication after medication to reduce her seizures enough for her brain to finally, at 18 months old, get a break and begin to recover. Who miraculously started using her vision after a year of being blind, who learned to sit up on her own at age 2, who started to reach for toys, to hold her own bottle and put her own pacifier in her mouth at age 3. All of this to the amazement and wonder of those of us watching her closely.

You don’t know the girl who continues to meet developmental milestones even after her seizures returned, this time in the rare form of a static seizure during sleep. You are a medical expert, so I’m sure you know all about ESES and I don’t have to explain this to you, but just in case, this means she gets NO GOOD SLEEP. Imagine how you feel after one night of bad sleep. This girl has been without restful sleep for three years. She closes her eyes to sleep and her brain goes into a constant seizure and yet, even in spite of this, she continues to develop. You try that. You go without sleep for even three days and see how well you are functioning, let alone three years.

Without sleep, she has started standing up and taking steps. She has learned to do somersaults and boy, they are the most amazing somersaults you’ve ever seen. She signs yes and no, she looks at books, she points to her eyes when she wants her glasses and she points to pictures of toys she would like to play with.

This girl, who according to you has NO RESTORATIVE POTENTIAL, who is currently on three very strong anti-seizure meds and still has seizures in her sleep, does more every day to demonstrate potential than any other human being I know.

But you don’t need to know any of that. I’m sure the information you based your decision on (What was that information, by the way? I don’t remember being asked.) was enough to determine her lack of restorative potential and justify your decision to cut her off from therapeutic services. Therapeutic services which I believe are meant to help people overcome their challenges right? But just not our daughter because her challenges are too many — so therapy wouldn’t apply to her. I guess the people your therapeutic services are for have a lot less problems and need a lot less help and therefore qualify for more help — is that how it works? That makes sense.

You don’t know my daughter, Kaiser Permanente, so maybe you don’t care at all about this label you’ve slapped on her. But I know some of you have daughters or sons and if you would put yourselves in our shoes for just a moment and imagine what it would be like get a letter labeling your child as having NO RESTORATIVE POTENTIAL, your stomach would turn, too, and you would think, wow, that is no way to talk about my child or any human being really, and you would be upset and you would be outraged and you would want that language and that mindset about human value changed.

Ultimately this is not about me proving to you my daughter has potential; she does. I know it, anyone who spends five seconds with her knows it. This is about me asking you to reconsider the way you talk about a human life: to eliminate the option of ever answering no to the question of potential for any human being. You have potential; who are you to say someone else does not?

Yours,
Laurie Arnold
A blessed mother to Julia Anne, age 6, bursting with potential!

This post originally appeared on I’m Julia’s Mom.

Story update: This was originally posted on January 2014. This post went viral and Kaiser contacted me within a day to apologize (profusely). They claimed higher ups in the company were outraged and addressing this “as we speak.” They told me this was auto-generated language that they would be changing in their system because it should never be used to describe a child. I was satisfied with this response and thanked them for being so concerned.

Unfortunately, about nine months later, we received a letter with the exact same language. I went to social media again and again Kaiser contacted me to apologize, this time claiming it was not their fault but my husband’s insurance plan that required this language. They claimed again they would try not to use this language in the future. I left it at that, there might have been more to pursue with Kaiser and going to the media but I just didn’t have it in me. I did write a second blog about it called “The Slippery Slope of No Restorative Potential.”

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Why We Take the Risks That Come With Motherhood

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I can’t think of anything as fragile as a momma’s heart. Before having kids, I might have never thought that or truly understood it. But being a momma breaks your heart.

I mean, I can’t think of anything more potentially heartbreaking. Sure, if you lose a spouse, parent or someone close, it’s an undeniable loss. But the thought of losing or something happening to your child — a piece of you — is so different.

Losing your son from cancer, having your third miscarriage, choking on fear at the thought of another surgery for your little girl, learning how to deal with kids bullying your 6-year-old, having other children call your baby “broken” or “gross”… I mean, seriously, how do us mommas do it?

I guess it’s the most selfless act of love. Our hearts are no longer are own. Mommyhood is this big, gigantic leap of faith — hoping, praying, wishing you get to keep them and protect them until your time has come.

But I guess the risk of it all is experiencing this kinda love.

The kinda love where both hands are used to grab your face for a kiss.

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The kinda love where you can make someone laugh more than anyone else on the planet.

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The kinda love where what you say, how you act and who you are, all matter. You choose how they see their momma and who they become because of it.

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The kinda love where you can still make mistakes daily but know your love is enough regardless.

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The kinda love where your life explodes in beautiful purpose and your heart finally feels fulfilled.

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The kinda love where you are their world and they are yours. And really, that’s all that matters.

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So to all mommas out there — those who lost a piece of themselves, those trying desperately to become one, those in sleepless nights and those grieving their empty nest. Regardless of the heartache, regardless of the fear, regardless of the unknown, remember and dwell in this kinda love.

“Motherhood: All love begins and ends there.” — Robert Browning

Happy Momma’s Day.

This post originally appeared on Happy Soul Project.

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What I Want All Special Needs Moms to Know on Mother’s Day

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I am a mom to not one, but two beautiful kids with special needs. Being a mom is great on its own, but being a special needs mom doesn’t just mean being a mom. It also means…

Being an advocate.

Being a therapist.

Being a teacher.

Being a researcher of diagnoses and diseases.

Being an IEP professional.

Being a driver to therapies and specialist appointments.

Carrying around medical evaluations and records because you never know when you are going to need them.

Having your heart break while watching your child go through tests, procedures and surgeries.

Being so exhausted your body literally aches at the end of each day.

But despite all of that, being a special needs mom is so rewarding. Mother’s Day means more to me because of all the things I get to see and experience, like…

Celebrating each and every word learned.

Hearing how your child is progressing in therapy.

Getting to work with amazing therapists who love your child and want the best for him or her.

Hearing your speech-delayed child say “I love you” for the first time.

Watching your child ride a bike while knowing that months earlier it was an impossible task.

Seeing your adverse child eat something new for the first time.

Hearing the good news that your child is finally gaining weight after months of weight checks and hospital visits.

Seeing your child meet milestones they weren’t meeting before, all thanks to therapy and your hard work.

Having them be your heroes because they never give up.

Portrait of a mother with her 4 months old baby

So if you’re a special needs mom, here’s what I want you to know this Mother’s Day:

You are special.

You are loved.

You matter.

You are a hero.

No matter what you go through, you keep on going. I admire you, your children admire you and one day they will thank you for all you’ve done. Don’t give up. You are a good enough mother. You are always good enough for your children.

A version of this post originally appeared on Singing Through the Rain.

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Why I Used to (Really) Hate My Mom

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One day in my sixth-grade science class, a discussion on albinism came up. Albinism is a “group of inherited disorders characterized by a reduced or lack of pigment that normally gives color to the skin, hair and eyes.” It’s a term that’s been thrown around my whole life, even though I don’t show the usual characteristics of it unless I’m in the chair at the eye doctor.

My teacher went on to explain that typically the mother is the main carrier of the albinism gene. (Although I later came to learn that it commonly takes two carriers to create the spark that brings the recessive gene to life.)

Add the feeling that it was your mother’s fault you were born screwed up to an already questioning time in your life and it leads to a recipe for disaster.

I hated my mom. I mean really hated her.

Some people say I get my personality from her. The kind of woman who would beat the snot out of any wrong doer. A Wonder Woman on steroids. A woman who fights for what she feels is right. A woman with true emotion in everything she does.

But put the both of us in a room and you got a showdown of epic Jerry Springer proportions. I hated her for bringing me into this world as a struggling person just wanting to be accepted. To me that hate stemmed from a belief she did it on purpose. Like she wanted me effed up as a way to torture me.

Up until my mid-twenties, I never quite understood why she would embarrass me by becoming my voice when I let my stubbornness get in the way. She’d say, “She’s blind, so read the menu to her,” at restaurants, when I would rather high jack an order from the dude in front of us just to look like I wasn’t stupid.

Then I realized she did all this to help me succeed.

She was always there for me in my darkest moments, from dealing with bullies to getting through my time in a mental health facility after experiencing panic attacks and suicidal thoughts. Never once did she judge me for my weakness, even though I judged hers. Through recovery, our relationship grew more than it ever before.

Needless to say, Mr. Science Teacher got it all wrong.

OK, he did get some things right. I got the strong-willed, fun-loving, gentle-yet-fierce spirit that can only come from Mom.

Genetics can never top that.

Thanks, Mom!

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To the Mommies Who Get to Raise Little Ones With Special Needs This Mother’s Day

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You wake up early every morning, and your body is still exhausted from the previous day… week… month… year. You give yourself a pep talk, take a deep breath and swing your legs over the side of the bed. If you’re super lucky, like me, your husband will have already brought up a hot cup of coffee and set it on the nightstand.

You head downstairs and mentally prepare yourself for the battles and potential triggers that lay ahead. You keep your voice light as you greet your child. Some mornings you get a big excited bear hug, and other mornings you’re met with silent indifference or an, “I’m busy.” You’ve learned not to take it personally.

The rest of the morning is spent getting yourself and your children ready for the day… you administer medications and then brainstorm the best way to get him to brush his teeth. Dressing takes three times as long as you fight your own selfish desire to just dress him yourself to make it go faster, but you know this is a life skill he needs to learn – no matter how long it takes. So you work together, sweating, and help him through it. He wouldn’t eat that morning, but you know that’s not unusual. Still, you feel guilty as you drive him to school on an empty stomach. Come to think of it, you never got a chance to eat either.

The day is full — full of phone calls and paperwork and emails. You set up appointments or drive to appointments. You call insurance companies and pick up prescriptions. You read the information given to you about new therapies and programs, and you try to balance your budget to figure out how to make it work. Horse therapy seems amazing and so does swim therapy, but you can’t get the numbers to agree, so you set it aside for another year, another time.

Laundry, grocery shopping, dishes, vacuuming, dusting, changing the sheets, mopping and all these things get wedged in somewhere as you have time. Sometimes you don’t, and that’s OK too.

At pick-up your heart swells as your child runs out of the school doors to greet you. The teachers tell you about his day, and you are so thankful for him and so very proud of who he is and how hard he works. He sat through the entire school play, and you cry tears of joy on the way home because that was such a big step for him.

Later in the afternoon you go from moments of silly fun to calm to panic in less than five minutes. He ran out the front door again, and you didn’t catch up until he was at the end of the street. Sweating and panting you try to explain how dangerous running away is and are met with a confused stare. Back inside you write a note to yourself to install a new specialty lock. That night you’ll wake up in a sweat because you dreamed he ran again, but this time you didn’t hear the door.

As you build train tracks he points to a toy and says the word that has been baffling you all week. Ah! Finally you know what he’s been trying to say. Relief sweeps over you as you realize next time he asks for it you’ll know what he wants and won’t have to settle in for an enormous meltdown.

You watch him play with his sister as you fix dinner, and your heart swells with joy at the gifts you’ve been given.

Another sunset and it’s time to repeat the routine you did that morning – meds, teeth brushing and getting on pajamas. You go through three different shirts because they were either too scratchy or too tight or too… something. His sensory system is rebelling against clothes, but he can’t sleep naked so you try again, and at the end of the whole thing he winds up accepting the first shirt you’d put on him.

You carry his tired body up the stairs and read him the same book you’ve read for the last eight nights because he loves the routine and consistency. You turn out the light and lay down… rubbing his back and humming for the next 30-60 minutes… or two hours… however long it takes for his body to settle. You look at his beautiful face, and your heart swells. You kiss his forehead before you tiptoe out of the room.

When you make your way downstairs you glance at your to-do list and see that’s it’s not even half finished, but you’re wiped out. Friends have left messages, but they will have to wait for another day. You’re too weary to talk, too weary to do much of anything. So you collapse on the couch and grab a book or the remote and just sit in the peace. If you’re lucky, you have someone sitting next to you… and if you’re really lucky he’ll be rubbing your feet.

You head off to bed and say a silent prayer that your door won’t be opened too early in the night by a frightened little boy who can’t sleep without the comfort and safety of your body next to his. You force yourself to turn off your brain as you lay in the dark going over everything that’s still unfinished and undone and waiting.

You know you’re going to start over again the next day, and the work will never be done. You also know it’s worth it. You know this is your story too. This story is about him, and it’s about you, and it’s about so many other people whose lives are touched by the little person you get to raise and love.

And you know that no matter what anyone else thinks, that all of this – the mentioned and the unmentioned, the hardest things and the most joyful moments – is a gift. Because it’s not that you have to do those things… it’s that you get to the be the one to do them. And you get the front row seat to every miracle.

So to you mommies… the ones who get to do so much and feel so much for your little people with extra needs… Happy Mother’s Day. I hope you have people in your life who tell you not just this weekend, but every day, how appreciated and loved you are. You are beautiful.

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This post originally appeared on LaurenCasper.com.

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