People Often Talk About What My Son ‘Can’t’ Do. Here’s My Response to That.

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I love being a special needs mom.

I’ve always been seen as an outsider to society’s idea of “normal,” being a Gothic mom, so accepting and understand people who are different is always something I’ve done.

I was told by friends, preschool members and community members that my son, Michael, has “anxiety issues” and isn’t “fitting in” and “having a hard time.” At first, his father, Andrew, and I felt like we had failed Michael and our other beautiful little boy, Luke. But the next step was, how can we help him?

For a long time, it felt like everyone was talking super fast to us about all the benefits of autism and what help you can get from an autism diagnosis.

But you have to wait 12 months for to make an appointment to get one. Then you need to spend $400 to see a pediatrician to get reports to add to the diagnosis before you can get any help or funding for your son.

So it became the biggest and longest waiting game of my life. I started to feel like I had aged so fast. Waiting for help felt like a lifetime and it got to a point that I decided that I couldn’t wait for the help anymore. I need to help myself and make the change in my life on my own.

The first thing I did was accept that there was nothing wrong with Michael. Michael was not the issue; it was my friends and his preschool that questioned my parenting and made me feel like I was a bad mother. I’m not a bad mother. I know my son better then anyone in the whole world.

My love for him is still the same. It was not until people made me question myself as a mother that things became stressful.

Once I accepted that I am a great mother and Michael is perfect the way he is, I just needed support and understanding. The healing could begin and I didn’t feel like I had failed him anymore. I felt like I could do anything.

Because the one thing people often told me about autism and my son started with a lot of versions of “he can’t.”

“He can’t make friends.” “He doesn’t have social skills.” “He may never talk.”

So I started to learn and teach myself how to better understand autism and my son. I learned he speaks 1,000 words through body language. I learned everything he did was a sign of anxiety and issues he had.

Once I learned that it was really easy to help my son, I quickly learned he loves routine. So I made the house routine.

I learned that I talk too much and ask too many hard questions. So I started to cut down my words.

I learned that he has very big sensory needs and needs big movement like rocking, jumping and running to make him feel safe. And that giving Michael space is more important then anything else. When Michael needs alone time, I need to give it to him because everything in the day has just overwhelmed him.

One thing I love about Michael that I have learned is when he lines up his cars from one room to another. That’s his way of telling me I’m not aloud in his space, until he moves a car and lets me in.

Michael start talking in two months’ time, and he started making friends and playing with the other kids. He started to make eye contact when he wants to talk to you. He now says hello to new people and tells you when he need a sensory break: “Mom, I need to jump for 1 minute to make me feel better.”

My son and I have come a long way. Our relationship is stronger and very loving. Michael is now 5 years old and had his first birthday party with his friends. Over 15 kids came and there was no meltdown; Michael just had fun.

We are not 100 percent ready for primary school next, but we will take it one day at a time, and this year, we accept that Michael’s younger brother, Luke, has autism as well. His experiences with it are very different, so I plan to working toward building a strong, loving relationship with Luke the same way I did with Michael: with a lot of patience and loving support.

All the thing I was told my kids “can’t do,” I’m going to make sure they can do them and more. I not going to hold my kids back from doing anything in life.

I love Michael and Luke. They are both the most beautiful souls you will ever meet and I don’t care that they don’t fit into “normal” expectations like other kids.

I see my kids for who they are.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Jack Nicholson Line That Made Me View Autism Differently

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Autism. In the days following my son Mike’s diagnosis, I remember a cashier innocently asking, “How are you?” as she pushed my groceries over the scanner. “How are you?” – the question felt like a knife. I just looked at her, pondering her words, pondering my emotions. It was too painful to provide her a canned response. Too painful to form a positive thought or consider ever having a positive emotion. “How am I?” – “How am I?” My son, my 23-month-old baby, my child has autism – how could I ever be simply fine?

Mike’s 2nd birthday party was scheduled to take place a couple of weeks after his diagnosis. I was paralyzed, simply going through the motions to meet my family’s basic needs. I belonged to my local Moms Club, and the other mothers came to my aid. They took over Mike’s party – hired the bounce house, cooked the food, helped with setup. I pulled it together enough to robotically attend, fighting back my tears and burying my emotions. To this day, I’m incapable of looking at the pictures from that party.

In the months following, I quickly formulated and implemented a plan. It was a recovery plan. I intended on pulling my son away from the diagnosis defining his life. I wouldn’t allow the dark thoughts to creep into my mind. I wouldn’t allow this diagnosis to define his future, not at 2 years old. I focused on the small progress he was making and threw myself into research. Autism became my life – therapy appointments, diets, vitamins, whatever was popular.

A year later, I found myself sitting and watching a movie that would change my life. No, it wasn’t the subject or message of the film that struck me – it was one line.

One simple question…

That question jolted my core and forced me to look at how I was living my life. I was living for the future – waiting for the therapy to work and my perfect child to arrive. I’d put everything on hold; I was going through the motions. I was wasting the childhood I did have with my children.

From that day forward, I’ve repeated that line countless times both in my head and to other autism parents. It’s given me the ability to shift my focus from what could be or could have been, to what is. It helped me decide what kind of life I wanted for myself and what kind of childhood I wanted for my children. It forced me to host great birthday parties and sometimes drag Mike into the world. I was able with modifications to fulfill the dreams I had for my kids before they were born. In essence, I chose to enjoy life. I chose to focus on each day without obsessing about an unknown future.

For, if this is truly as good as it gets, I choose to make the best out of what I have been given.

After all…

This post originally appeared on Autism Hippie.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What a Meltdown Feels Like for Someone With Autism

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It’s never just a sandwich.

As an adult on the spectrum and a mother of children with autism, I am often asked about meltdowns and how they feel. I can tell you how it feels to have a meltdown from my perspective and how to help your child.

When you have a meltdown, it’s as if the world is ending. Everything is too much and you feel like an overwhelming darkness has engulfed your very being. Irrepressible anger that may seem completely irrational to an outsider can be inwardly devastating us internally.

When your child suddenly explodes because their sandwich has been cut at the wrong angle or another child has won a game, or even because they have been jostled in line, it’s the catalyst. It’s the last straw on the camel’s back. It’s not the sandwich, necessarily; it’s a build-up of things that may have happened during the day or even previous days. That sandwich was the last thing they could control and once that erred, their world crumpled. The last bit of control over their universe disappeared.

Smashing, ripping and throwing might be involved in an angry meltdown, as well as self-injurious behaviors to display outwardly the pain they’re experiencing internally.

How do I know this? Because it can take me missing throwing something into the bin or my PIN failing to go into my online banking properly and I will puddle, literally explode/implode and sob like my heart will break. It will be because of a build-up of things, and frustration will be the reason.

There’s also the depressive meltdown, the one that makes you feel like you’re nothing, worthless, and like the world would be a better place without you.

There’s no rationalizing with someone in either of these meltdowns. If you tell us it’s OK, it’s not. You are trivializing our distress and it will make us worse. “Stop” or “Get a grip” are also triggers, because we would if we could; no one wants to feel this way.

If your child is self-injuring, guide the hands down to a firm surface to hit.

If they are biting, grab a chewy or clean washcloth for them to fasten onto; they may need to feel the pressure of the bite to ground them, so wind a cloth around their hand so they can bite their hand without breaking the skin. If they head-butt, get crash mats and a safety helmet. A weighted blanket works well to help regulate, as does a weighted body warmer. Offer these if you see a meltdown is on its way.

Rumbling is a sure sign, or pacing up and down or verbalising aggressively , so redirect to a safe, quiet area, if possible.

If you are out and a meltdown occurs, the child may run. This is because we literally need to get away to somewhere quiet and sense of danger will fly out the window. If you need to restrain your child and get them somewhere safe ,do so. Print off a few cards detailing your relationship to your child and the fact they have autism and are having difficulties coping, as the sight of an adult carrying or holding down a screaming, struggling child can be mistaken as abduction.

If your child has violent reactions before school or after, it’s more likely anxiety and frustration at not being able to communicate what’s happening. Sensory overload is also a massive trigger. The school should be making accommodations for your child, like sensory breaks and allowing the use of ear defenders, tinted lenses and a chewy if needed. Check that your child is not being bullied, as they may not even realize that you don’t know that they are and may feel resentful toward you for taking them.

It’s never just a sandwich.

Lastly, only restrain your child if they are a danger to themselves or others, as a touch can feel like an electric shock and may cause them to strike out with a fight-or-flight mechanism.

Too often I see posts on Facebook and articles by parents moaning how terrible it is to cope with a meltdown and how hard it is for them; they have no idea how hard a meltdown is.

It’s about your child and how bad they are feeling. Please don’t punish or berate your child for how they have reacted, as its not willful or even conscious. Maybe they even blanked out completely, as in a full-blown meltdown. This can happen, too, leaving us bewildered at the devastation around us.

A cool drink and dark room, as well as clear, short sentences, will all help.

Remember, there’s more to it then a sandwich.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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When the Woman Cutting My Son’s Hair Asked, ‘What’s a Meltdown?'

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Yesterday My Boy got a haircut. Haircuts are a thing. Many parents both on and off the spectrum struggle with them.

Our struggle isn’t just getting through; it’s the possible negative scenario if he can’t get through.

Out of fairness and kindness, I do my best to prepare anyone cutting his hair that, should things go wrong, there is no need to be afraid. I’m 2 inches from his shoulder. My hand is within touching range. I’m right here.

I’m here for him, but I’m also here for you. Because My Boy has needs that you, a stranger, will be unlikely to help with. That isn’t because you are ignorant or selfish or uneducated. It isn’t because you are cruel or judgmental or indifferent. It is because my child is not your child.

You do not know his favorite foods or his favorite colors or his warning signs or his hopes or his dreams or the Christmas list he is preparing to recite to the Easter Bunny or how, in our home, that all makes perfect sense.

So to expect you to understand his sensory needs or his meltdowns or the years of behavioral adjustments that I, as his mother, have had to study and learn and re-learn, doesn’t make sense to me. I don’t expect you to see him and respond to him as I do.

So I took him to you, a stranger, to cut his hair yesterday. I thought you were a charming, sweet young woman. A beautiful African-American with long, delicate fingers, you made every effort to calm my son and make him comfortable while you cut his hair.

You moved slowly and carefully around him, reassuring me that his jerky movements and tics were perfectly fine. You checked on him repeatedly. Made certain that hair didn’t get in his eyes. Arched your tiny arms over his head so that you wouldn’t interrupt his field of vision so that YouTube Kids on my phone could continue to keep him in the chair.

And you asked questions. Concerned, friendly, uncertain questions. Questions that I haven’t answered in a long time. Questions like “What’s a meltdown? I don’t know what that means.” You didn’t know.

And I had to look at you. A sweet woman, a mother and hairstylist who sees countless people coming and going in her day, and realize that I have become so enmeshed in autism that I had forgotten people still don’t know.

When I write or speak about autism, I do so from my own level of understanding. When I answer questions, I use terminology that is the autism equivalent to Christianese: words that only those in the ‘’circle’’ understand.

Words like meltdown and OT and PT and SLP and IEP and spectrum and severe and verbal and non-verbal and sensory processing.

And autism. Yes. “Autism.” Really.

To millions, ‘’autism’’ is a son or a daughter or a brother or sister or cousin or friend’s child. It is a documentary. It is a blue light bulb. Or a puzzle piece. Or a blog post.

But to millions and millions and millions more, it is an unknown. Maybe frightening. Maybe a curiosity. Maybe nothing but a word. And if I can remember this, if I can remember that if you don’t live autism or experience autism or work with autism or write about autism, then I will remember that you are the person I desperately need to reach during this time of awareness.

You are the person that I need to remember doesn’t daily (or hourly) differentiate between meltdowns and tantrums.

You are the person that I need to remember maybe can’t understand that our lives are different from yours in so many ways and yet so very, very similar because you simply have never had the opportunity to be made aware.

Most of my opportunities to meet someone like you will be in the aisle of Wal-Mart where my screaming child is flailing and I am asking you to stand back while doing my best to safeguard him while handing you an awareness card while sweating and hot-flashing and wishing I had made a shorter grocery list.

And maybe you will be receptive or maybe you will be confused. Maybe you will understand and maybe you won’t.

But sometimes I have opportunities like this: Beautiful, quiet moments with a beautiful, quiet soul. Where you can touch and see and listen to My Boy. Where you can ask and be answered. And feel safe to ask and be answered.

You see, I am aware of autism. 24 hours a day, 7 days a week, 52 weeks per year. I am always aware. Because my child has autism.

So spending that 15 minutes to help make you aware in a safe and kind manner will buzz through my memories off and on until they begin to dissolve and finally to fade into other moments of awareness. I know because I know there will be hundreds and hundreds more.

But that 15 minutes with us gave you an opportunity that, if I had been closed off to it, may have altered or ruined your understanding of autism forever. Or, worse yet, may have simply never happened at all.

Should advocacy for autism stretch beyond simple awareness? Of course. I absolutely believe so.

Should I understand that simple awareness is the first step and is still absolutely necessary? I absolutely believe so.

And that is why I am sharing here what I shared with you. So that more people like you will have a moment, however brief, to be made aware of something that is affecting 1 in 68 children. To be made aware of something that some consider a gift and some consider a curse, but that all affected consider a matter of importance.

Aware that 1 in 68 children means we should all be “aware.”

You don’t have to be aware at my level. It’s okay that you don’t know what OT/PT/SLP/IEP/504/SPD/OMG mean.

But if you can ask and see and know the basics, then you are aware. And I am grateful for that. Because our lives will be more beautiful and more comfortable because of it.

And maybe because of this 15 minutes one day, if you do see us at Wal-Mart, you won’t need the awareness card. Because you’ll already be aware.

“Fancy,

A meltdown is similar to a tantrum, but at a much more intense level. You know how with a tantrum if you give in and give the child what they want they stop tantrum-ing? Because they were really throwing a fit for something they wanted? It was a manipulation?

When My Boy is having a meltdown, he can’t stop. You could give him what he wanted and he would be unable to calm himself.

He can hurt himself. He can hurt me. He can be completely unaware of anything around him.

It can be because he wanted something. That can trigger it. Or it can be triggered by a sound or a smell or a flashing light. Because sensory assaults can physically hurt him. Or it can be because he can’t communicate his needs.

He’s 5 and a half and he’s sitting here talking about Minecraft. But he could be thirsty and unable to process he is thirsty and begin screaming because his throat is parched and doesn’t know how to ask for a drink. And it hurts. And all he knows is that he has a need and I’m not meeting it. But he doesn’t know how to tell me he has a need. Because with autism, being able to speak doesn’t always mean being able to communicate. And not being able to communicate can really, really hurt a child.

And he could have a meltdown if I can’t anticipate his signals. If I am listening for words instead of looking for communication.

It’s confusing. There’s a lot to know. There’s a lot I don’t know. There’s a lot I am just now learning.

So it’s okay that you didn’t know. That you weren’t aware.”

This post originally appeared on “Letters From a Spectrum Mom.”

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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How I Got Over My Fear of Disciplining My Child With Autism

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I saw the signs at 14 months old, and I tricked my brain into thinking “No, I’m being ridiculous, she’s my second child, of course she’s going to be different.”

I believed people when they told me that she would “catch up.”

I thought she liked playing alone and was just shy.

“No, she’s tired, and she’s just rocking herself to sleep, she’s fine.”

Denial. Denial. Denial.

Evaluations, testing and then diagnosis day.

Denial sucks because it hangs on tight and attaches itself to you even long after you think it has left.

Blame and grief come hand in hand, and they too rest somewhere inside you; they creep up on you when you least expect them.

Intensive in-home therapy started when she was 19 months old; the diagnosis was official when she was 21 months old. For 20 hours a week, my home is not my home — it’s a school for Zoey and me. I sit down on the floor to participate. I learn from her four specialists and therapists. They’re her teachers, and I, too, become her teacher, advocate and caretaker. I’m always her Mommy who loves her.

Now here it comes…

[UNSET]

I treated her like a fragile piece of fine china, a porcelain doll I didn’t want to break. Oh, how I blamed myself! I let those emotions take over and I treated Zoey differently.

I babied her and let her get away with things I would never let my 4-year-old get away with…why, I don’t know.

When blame, grief and denial attach themselves to you, they can take over. At times, you hear yourself say “She doesn’t know any better… She can’t help but throw that cup across the room… She doesn’t understand the word ‘No!'”

Oh, but she does. She most definitely does.

Denial, blame and grief… you had me for a long time.

Zoey is just like my other child — she needs to hear the word “No,” and she needs to be told, “Get down” and “Not nice.” She needs discipline, and I wasn’t giving her that.

I treated her differently.

My daughter’s diagnosis has taught me that though she learns differently, she’s not different. She’s not a fragile porcelain doll that will break.

I noticed that when I said “No!” she looked at me and smiled, as if to say, “Yup, I’ve been testing you this whole time… I’m busted!” Now, I’m learning the difference between whether or not she’s testing me or she can’t help it. So I’m different now; I’m a changed mom. I see where I made mistakes, and I’m working hard on fixing them. It’s not easy, but it’s working.

So there’s my confession: I’m not perfect. I sure did learn more about autism from my child than I ever thought I would.

Follow this journey on Melissa’s Facebook page.

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When I Wondered Why a Woman Was Apologizing to Her Screaming Child

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I saw a woman standing outside Target the other day desperately trying to get her son into a shopping cart. He was a big kid, maybe 5 years old. He was screaming and stiff; she couldn’t even get him into the big part of the cart. He had a binky in his mouth and wasn’t talking or yelling anything at her. He was just mad, so mad. I think she was signing to him, but it could have just been her trying to make him laugh with hand movements. He was getting madder and madder. The part that was hard to watch was when he started grabbing and pulling her hair, jerking her head all over the place. He was unconsolable. Other people were staring at his mother, too.

She held him in her arms while he flailed and arched his back, shaking his head, still pulling her hair. He actually he pulled some of it out. She kept saying to him, “We have to go shopping, I’m sorry you’re so mad and frustrated. You can hold my hand and walk or get in the cart.”

The look on her face was so odd though.

She looked so calm. She never raised her voice. She just waited for the storm to wash over.

The screaming stopped for a minute, and she whispered something to him and all of a sudden he relaxed. Still holding him, she walked towards the store.

She was telling him, “I’m so sorry.”

I was trying to figure out what the hell she was sorry for.

Later that I day I saw the same lady.

I was at the mall, and this time, she had her son back in a carrier. He had a cup of binkies, a whole cup. He wasn’t screaming this time, but he was pulling her hair again and trying to throw his weight around to get her to where he wanted to go. He was tossing his binkies, and every time someone looked at him, he’d hide his face and cry.

I couldn’t believe I was seeing her again. She had the same look on her face and kept talking to him, telling him they needed to do this and that she was sorry.

Seriously… what is she sorry for?

But I realized that woman is no stranger to me; that woman is me. The kid that looks like he’s 5 years old is my son, who just turned 3. I’ve heard people talk or say snide comments as they walk by when my son is having a hard time. I remember not being a parent and seeing parents out with their kids and watching their kids freak out and judging or assuming I knew whatever it was they were doing wrong.

Everything stops and slows down when your child is having a meltdown. I have to quickly figure out who, what, where and why he might be struggling with whatever it is that sends him over the edge. I have to think about the entire week, our day and where we are. Sometimes I have no clue what actually triggered the meltdown. I just have to find a way to get through to him in that moment.

My son is notorious for pulling my hair when he gets frustrated or overwhelmed. Trust me, it hurts so badly. I muster everything I have to not scream at him or squish his little hand to get him to let go. I try hard not to yell back at him. I find a soothing tone and talk to him even though he can’t think straight. I cannot put him down when he’s like this or he will throw himself on the ground or just bolt. I’d rather have him pull my hair, even if he’s pulling it out.

My job is to keep him safe and try to understand why he’s feeling the way he is.

This is the part of autism that I have a hard time with.

Not because he physically hurts me or because people stare or make comments, but because I know he’s in so much pain.

Suddenly, I understood why that woman was sorry.

Because I’ve been sorry for dragging him out of the house knowing all he wanted to do was stay home and watch TV and cuddle with me. I’ve been sorry when he had horrible diaper rash and we had to go to the store so I could get him ointment. I’ve been be sorry when I couldn’t just give in and go home because we needed other items. I’ve been sorry when I knew the week was full of firsts for him and he was struggling to understand why there were so many changes. I’ve been sorry he was hurting so bad and I couldn’t make it stop.

This post originally appeared on Finders Seekers.

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