10 Ways My Kid With Autism Kicks Butt

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Here’s why my kid with autism kicks butt. I would say “kicks butt and takes names,” but he’s terrible with names.

Anyway, here is why:

1. He doesn’t break rules. He sees things as black and white, so when he’s given a rule, he sticks with it. If he has 10 minutes on a computer game, he will turn the game off right at the buzzer. If he has to do chores before he can go on a bike ride, he does them immediately without argument. The only exception is a rule like “no iPad after 7:30 p.m.,” but you know, what kid doesn’t wake up at 2 a.m. to watch animal videos?

2. He isn’t mean. When you make a friend in him, you make a friend for life. He will never say anything mean to you — unless he’s your brother, but then he instantly feels badly about it and gives a hug and apology. So that’s not so bad, either.

3. He can’t lie. If he tries to, his dimple and devilish grin give him away immediately.

4. He’s consistent. My son with autism doesn’t vary his daily activities very much. So if you want to know where he is after lunch on a certain day at school, you’ll know just where to find him. Or if he’s misplaced something, it’s easy to follow his tracks and find it pretty quickly.  

5. Small things are huge successes. He feels so grown up when he walks our neighborhood loop all by himself. When he wants one thing at a restaurant but has to choose something else because his desired item isn’t on the menu, he’s happy that we praise his flexibility. When he does homework at home instead of at school without a meltdown, his grin reaches ear-to-ear as we tell him how proud we are. Baby steps. But if you string enough baby steps together, soon you can look backwards and see how far you have come.

Photo on 5-11-15 at 1.07 PM

6. BirthDAYS are birthday WEEKS. He celebrates each day leading up to his big day and walks with a little more spring in his step as that day approaches. Just looking at him makes everyone around him smile. It also helps my case when I tell my husband I’m entitled to a birthday month, but I digress.

7. He’s confident and doesn’t care what others think about him. When was the last time you met someone who didn’t care if someone giggles at them if their shirt is on inside-out? Or isn’t upset by people staring at them because they’re thinking of a movie in their head and mouthing the words? He is who he is. He does what he does. He’s happy. Negative people aren’t even a tiny blip on his radar. Unless someone says “Hi TJ!” or “How are you today?” — then, of course, he cares and is happy to interact. But if anyone is negative to him during his day, it’s like water off a duck’s back.  Unless, of course, he’s arguing with his brother, which is rare. We look at that as a good opportunity for him to learn how to stand up for himself. He’s pretty good at it.

8. He’s so, so kind. If he comes across a friend who’s sad or having a hard time, he will pat their back and say, “It’s OK, I’ve got your back.” Or if his brother has lost a soccer game, he hugs him and says “I know you’ll get them next time. I have faith in you.”  

9. He has a fantastic sense of humor. Yes, a lot of what he says is taken from a favorite movie or TV show, but if he finds a way to use it appropriately in an interaction with someone and the humor makes him and his friends laugh, what’s wrong with that? It may be an unconventional way of connecting with someone, but the fact that he recognizes it as a tool to make a connection is a victory in my book. Things get a little iffy when his potty-mouth humor comes into play, but he’s quick to learn what is and what isn’t OK to say in public.

10. He cares. He cares about others, he cares about himself, he cares about his town, he cares about animals and he cares about the world around him. He will stop to pick up litter if he sees it in his school parking lot. He will hug a friend or family member if he sees them crying. He hands out animal facts to people walking by the foot of our driveway so he’s not alone in his fight against poachers or helping endangered species. If he learns from my Facebook that a friend has scored a goal for their sports team, or gotten their braces off, or won a wrestling match, he will ask me to pass along his encouragement. His’s a sweet, caring, thoughtful heart, and he shares it often.

For these reasons — and so many more — my kid with autism is a fantastic, kick-butt kiddo. I’m so, so lucky to have him.

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How You Can Show Love to Mamas Who Had Empty Arms on Mother’s Day

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Freshly picked bouquets stacked in bunches, lovely hydrangeas planted in bright pink pots, cards spilling out into the store aisles and 1-800-BUY-HER-THIS commercials repeating on the radio: all reminders that Mother’s Day was on the horizon. Envious, I longed to be pampered, fussed over and honored. Desperately, I wanted to expect cards in the mailbox and notes in my inbox. I fantasized about getting one of those carnations they give out to all of the moms after church.

I wanted to be just like every other mama on Mother’s Day.

But I was not.

Mothers are special people. Well, all people are special, but only a mama can contain and grow life within her. Many sacrifice their bodies in order to nurture wholly new persons. And even those moms who don’t carry a person in their wombs, cradle sons and daughters in their heart. Mothers give up sleep, comfort and personal space in order to satisfy the needs of another. It’s no surprise that we’ve designated a day in order to shower them with attention and praise. Except for some women, like I was, Mother’s Day can seem more like a cruel date on the calendar than a joyful celebration.

My arms were empty that first Mother’s Day. There was no cooing babe swaddled in my arms, no wriggling toddler perched on my hip. I had no stroller to push, no diaper bag to haul nor cradle to rock. My firstborn had died the previous summer, so I bore no “proof” of my continuing motherhood. I felt like a mother, but I appeared to be a childless woman. Ashamed by my conflict, I was caught between two realities (the one my heart understood and the one the world saw).

An awkward position in a time when people are heralding children as a choice, the unseen child cannot be justified by many. Then others, who aren’t sure how to comfort a grieving mother, think it best to ignore what has been lost.

How I wished that I could remind everyone that my son had been real, not some temporary dream or imaginary person. He had been flesh and bone. And his very existence in the world, while brief, had changed me into someone new. That first son had made me a mommy, but his absence left me in a (painful) limbo.

I am not suggesting that we scrap the holiday in some ridiculous politically-correct attempt to “level the playing field.” No, mothers deserve recognition and we all need to remember the countless ways in which women give of themselves to care for their children. The truth is that when a woman becomes a mother, some part of her becomes forever entangled with her child. A lasting imprint gets left on her heart and in her mind.

Thankfully, my own mother sensed my grief that first lonely Mother’s Day and sent me a delivery of sweet-smelling roses. My husband knew my dilemma firsthand and he, too, gave his best effort to make me feel cherished. Those tokens of support and acknowledgment meant a great deal to me. They also allowed me to shed my shame and embrace the reality that I was truly a mama.

If you know someone who has lost a child, especially a mother who’s lost her firstborn/only child, please remember that it’s not too late to reach out, whether it’s to wish her a Happy Mother’s Day or otherwise. Send her a note, a text or a card, call her on the phone or drop some flowers on her doorstep to remind her that you recognize her motherhood. Tell her that no matter how long she was able to carry her child (whether in her womb or in her arms), she remains a mother forever.

A version of this post originally appeared on Blessings in Brelinskyville.

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The Emotion Parents of Preemies Shouldn’t Be Afraid to Feel

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I’ve been a little disconnected lately, partially because we’re busy and partly because I felt I didn’t know what to say. So I sat down today to really think about why. How can I have nothing to say when my head is always spinning with thoughts?

It came down to the fact that I realized I’m angry. And I don’t feel like it’s OK to say that out loud.

It’s been two years since my son V came home, and it often feels like this anger should be over.

But the truth is I’m still angry.

I’m angry about everything we went through.

I’m angry that V had to fight for his life.

I’m angry that we’re still so affected by V’s extreme prematurity.

I’m angry that we’ve been isolated for so long.

I’m angry that we’ve lost friendships because of it.

I’m angry that sometimes it seems hearing good news is harder than hearing bad news.

I’m angry that we’re still waiting for the “other shoe to drop.”

I’m angry that fewer and fewer people seem understanding of our restrictions. And even less people actually get why we have to do this.

I’m angry that we don’t know what the future holds and that the answer to most questions of “When will V do/be ___” is “We don’t know!”

I’m angry that we didn’t experience the typical rites of passage for new parents.

I’m angry that people keep expecting V to be the kid he would have been had he been born on time.

Guys, I’m really angry still. And that needs to be OK to say… even two year out.

If you’re a preemie parent reading this, I want you to know it’s OK to be angry. Whether you’re in the NICU, just discharged and home with your preemie or it’s been years. It’s OK. Even if it seems like other preemie parents have moved on, I want this post to remind you that it’s not necessarily true. We all grapple with different emotions at different times. There’s no one way to process this, and there’s no end point after which you and your preemie are “cured” of prematurity. It’s OK.

And if you’re a non-preemie, non-NICU parent reading this, I want you to know it’s OK that I’m angry. You don’t have to fix it or try to say something to make it better. When we made the decision to take all possible measures to save V’s life, this is the life we signed up for. A beautiful, wonderful, messy, complicated life — one I wouldn’t trade for the world.

This post originally appeared on Handpicked Miracles.

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5 Secret Gifts I’ve Gained as a Mother of Children With Special Needs

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I wanted to share a secret today. It is a secret that is shared silently among those who have children with challenges or disabilities. It is one of many secrets that contribute to what makes us amazing.

Today, I want to share with all who are starting this journey the following: when you confront challenges, just know that you will not do so alone. You will be given gifts to take along your journey. Treasure these gifts because they are simply amazing. They are worth the challenge and hold value beyond measure.

Others outside of the special needs community are oblivious to these gifts and might have difficulty understanding that you can derive something so incredibly positive from watching your child overcome. Yes, it is difficult to watch someone you love struggle to meet milestones that come easily to others. I would give any amount of money to not have to watch my child endure such challenges. No, being a parent to a child with special needs isn’t for the faint of heart. We are a special breed, indeed.

However, I relish the gifts that come from being the mom of children who have struggled to meet milestones. It is one of the many paradoxes of being such a parent. The truth is that when much is required, much is also given. Anything worthwhile is challenging, and being the parent of a child with special needs is both challenging and worthwhile. Plus, the greater the challenge, the greater the reward is.

I want to share just a few of the amazing gifts I gained.

1. The Power of Can’t

It may sound crazy, but I am thankful that I have the “can’ts” of life so I can better appreciate the “cans” of life. I am the mom of two children with disabilities and I have heard the word “can’t” mentioned many times. It is usually accompanied with its constant friends “never” and “won’t.”

At first, when I heard the word “can’t,” I was hurt and angry because I could not understand why the person assessing my boys couldn’t see the amazing little boys that I did. However, over time, I have learned that “can’t” is only one person’s opinion of what you are capable of doing or becoming. It is just that — an opinion — and not an expectation of where you will be or what you will do, unless you invest in that word.

Some of the “can’ts” in our lives has come to fruition. Yes, Noah is not a tree climber. But it has been my experience that we all have “can’ts” in our lives. I will never run a marathon, not because I am not capable of running, but because I don’t have the desire to run unless I am being chased by a mountain lion.

However, it has also been my experience that there is a gift that comes with the “can’ts” of life. When you achieve a milestone that you were not supposed to achieve, the highs are just a little higher, and that is the gift of the “can’t.” You see, when your child says his first word or takes his first step as an infant, you call Grandma and take pictures, but if your child takes his first steps at the age of 9, it is a hold-your-breath moment — nothing could be more amazing.

2. The Beauty of Being

Outside the world of special needs, much is made over what you can do, what you have (your earthly possessions), and what you will achieve. Your value as a human being is directly tied into those attributes. “What do you do?” is usually one of the first questions people will ask you when they meet you.

There is something about being a parent of a child with special needs that erases all those questions and places importance on where it should be — just being. Those questions hold less value to those in the special needs world. We see the amazing in not what you have or what one is capable of achieving. We place value on a child’s mere presence. The fact our children overcame great odds just to be present holds value. All else pales in comparison.

“Are they happy?” usually holds more value in the heart of a parent of a child with special needs than anything else. You will come to the point in your journey that you appreciate your child for who he or she is, disability and all. You will appreciate the simple things like a smile. You will see value in every milestone, whether small or great. Yes, you will get how monumental the smallest of things are.

3. Belief in the Impossible

You will be the same as other parents, with the same hopes and fears, but you will be undeniably different. It will be as if your complete DNA has been changed. It is as if you were given special glasses to see the world differently with the birth of your child. Those special glasses color everything you see.

You will believe in the impossible. You will realize that you must be an active participant in your child’s potential. So, you will look at a mountain of challenges and think to yourself, “It can be done. It is possible. We will overcome.” A thousand physicians, psychologist, therapists, or educators may call it an impossibility. However, if one parent of a child with special needs believes in her child, anything is possible.

I have personally seen children overcome immeasurable odds to surprise many educated individuals because of one determined parent. No one will research like a concerned parent. This colors how we parents look at everything in life. Say NO to a parent of a child with special needs and see what happens. I can assure you that it will not be pretty.

We special needs parents look at challenges as opportunities in disguise. When one door shuts, we start looking for a window. All it takes is a small sliver of hope and the possibilities are limitless. This is not to say that your child will achieve every goal that you set, but I can say he or she may achieve some that no one believed possible — except you. That tenacity is a gift, and I am so blessed to have that in my life.

4. Gaining Community

You often hear in the world of special needs about people losing disingenuous friends because of the difficulty of maintaining friendships. However, it has been my personal experience that for every friendship that has dissipated due to the stressors of having a child with a disability, I have gained two new friendships.

These friends are “shiny” friends. One of the biggest gifts that my sons, Noah and Ethan, have given me is the ability to meet “shiny” people. These people have just that extra wonderful something that makes them shine above the traditional individuals you meet along the way. I include in this group those individuals who choose to help individuals who have special needs, not because they have to, but because it is their calling. I am blessed to call so many of these individuals friends.

Furthermore, I have met so many parents of children just like mine who live life to the fullest and become close, dear friends. Our children have grown up together online. I am blessed to be a part of such a global special needs community. I believe my global world is in some part because of my boys’ challenges, and I find that there is a blessing to every storm.

These friends are most certainly one of my greatest blessings. The ability to confide in such a wonderful vast group of knowledgeable people is priceless. We are extremely diverse, yet share an integral common thread, which revolves around our children. I think often if my boys had not developed cerebral palsy, most likely I would probably live in an egocentric world with just the people around me. The fact that my friendship circle has grown globally expands my horizons in untold ways and is a blessing. It is a gift. Treasure your community.

5. Treasuring Differences

Lastly, I know without a doubt that I experience amazing moments more than most. Things that don’t happen to the typical mother. For example, when Noah was about 4 years old, I was at the mall and encountered a group of tough, young guys. I immediately lumped this group of boys into that category just by the way they were dressed and the way they were acting. As fate would have it, my boys — Noah in his wheelchair and Ethan — blocked these boys’ path to a store. The leader of this group stopped and everyone behind him stopped, too, as if on command. So, here we were facing each other, two very different groups of people. Then, the leader of the group looked Noah over head to toe. In my mind, I went on high alert because I was fearful he was going to say something negative to Noah, and I had no idea how I would react to that.

Then the boy in the front says to Noah, “Hey, little man.” What?! Here is this supposedly tough, menacing individual responding to my child with such softness. Then, miracle of miracles, Noah waved at the tough-looking individual, actually raising his hand like they were old friends. We all laughed until our sides hurt. They gave me a nod like I had been accepted into their group. It was as if those who are different — those who are judged — identify with his struggle and that becomes a bridge between our worlds.

That is a gift and I love it. It makes me a better person. It reminds me how we are all different and we all have gifts despite our outwardly appearances: tough guys at the mall, minivan-driving mama, little guy in the wheelchair. I am so lucky that I get to experience moments like these, not occasionally but often. My boys’ presence allows me to see the very best that humanity has to offer. I stand by as a spectator and soak up those rays of sunshine. That is gift.

Appreciate your gifts. These are just a few of mine. My hope is you will experience more gifts than I have. Take those gifts inward and dwell upon them. If you happen to perchance stumble upon someone giving you a look of pity or sadness, smile knowingly, because that individual has no idea about the gifts you have been given. Try hard not to pity them because they might not possess the ability to see you or your child fully. I travel heavy, but carry many gifts, and so do you. Treasure your journey.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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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.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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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.”

kaiser no restorative potential letter

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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