Parents Win Fight With Town Board for Neighborhood Autism Awareness Signs

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One upstate New York town will soon have autism awareness signs posted in some residential neighborhoods.

Louie Blazer and Dawn Stinner are both parents of children on the autism spectrum who live in Town of Tonawanda, New York, ABC News reported. The parents, who live in different neighborhoods in the same town, are both fighting for the right to put up a sign in front of their homes warning drivers that children with autism live in the area. The parents feel the sign is necessary because children with autism can be prone to wandering off and are sometimes unable to perceive danger

Despite the fact that at least one similar sign is already in place in the town, Stinner and Blazer were initially told that erecting the sign in their neighborhoods would be illegal. They’ve spent months dealing with the police and highway departments.

“Some of these children, including my own son, do not have the ability to adjust to their surroundings in order to protect themselves,” Stinner told ABC News.

After a group session on Monday, July 17, the town board approved the signs for both Blazer’s and Stinner’s respective neighborhoods. Supervisor Anthony Caruana said that in order to promote public safety, drivers should be aware just like they are for a child who is blind or deaf.

Get the full story from the video below: 

 

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Watch This Elderly Woman’s Reaction to a Birthday Present

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Sometimes the smallest gesture can mean the most.

Angela Withers Berton, from Cleveland, Texas, works with the elderly. One of her patients had been frequently admiring Withers Berton’s brightly colored shoes, so on the day before the patient’s birthday, Withers Berton gave her a thoughtful little surprise — a brightly colored pair of her own. 

Withers Berton shared a video of the patient opening her present to her Facebook page on July 22. She said that the patient cried when she read the card, but the joy on her face when she opened the gift made Withers Berton’s week. The video has since been viewed over 5 million times.

See the patient open her new shoes in the video below:

It's my patient's birthday tomorrow so I found her some bright shoes since she has been admiring mine so much. She cried when she read her birthday card but The joy on her face when she opened her present has made my week. ❤️ her! (Shared with permission).

Posted by Angela Withers Berton on Wednesday, July 22, 2015

I posted it because of her joy,” Withers Berton wrote in a comment below the video. “Her reaction to this small kindness just shows that it doesn’t take much to make someone’s day. Sometimes just a smile, a hug or even a five-minute call or visit to an elderly person can mean the world to them.”

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When a Panhandler in a Wheelchair Changed How I Think About Respect

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The moment in Paris I’ll never forget wasn’t the taste of a spectacular glass of champagne or the sight of the Eiffel Tower. It was a chance meeting with a man.

I was out on a stroll (roll) just a few hours after arriving in Paris. Not five minutes in, I crossed paths with another wheelchair user. He’s Romanian. In a past life, he was a husband and a father. He became disabled after what must have been a horrible accident involving a fire. He was abandoned and cast aside — even by his own wife. Now he’s a panhandler, seeking out the generosity of others to survive.

I, too, am a burn survivor. Our shared experience allowed us to connect through understanding. My injuries were extensive and led to three amputations. I was fortunate to be left with a healthy, dominant left hand. This man’s hands are missing fingers. He lost a leg. His facial scarring is severe. But he possesses a spirit that is unconquered.

Ten minutes into our meeting, I asked for his name. He motioned to his breast and said, “Heart.” Confused, I asked again.

“It doesn’t matter,” he said. “I am my heart.”

Let that sink in for a moment. I did. I realized my worldly identity means nothing. What resides in my heart determines who I am.

He asked me to follow him down the street. I didn’t realize until we had arrived that he was taking me to his home.

He lives on the Champs-Élysées, the posh avenue which connects the Louvre museum and the Arc de Triomphe. He’s not staying in a fine hotel like the one I will enjoy this week. Every night, he makes his bed by the door of a shop on the Rue du Colisée.

He pointed to the ground at a loaf of bread. “The owner leaves this for me.”

I thought again of that heart. I told him he inspires me and is a good man. I told him his strength was heroic.

Gesturing to the sky, he said, “I only live because of God. That’s life.”

I made the sign of the cross, saying a silent prayer for my new friend, “Heart.” He came closer, locked his wheels and embraced me. He cried. I cried. He held me tighter and kissed my cheek. I kissed his.

“No one respects me,” he said. “No one loves like God. I am Orthodox.”

I told him about my Roman Catholic faith. How I credit the love and teachings of God for my own recovery. He nodded in agreement.

I told him that I wanted to share his story with my friends. I asked to take a photograph with him, but he declined. I understood.

John Morris the mighty.2-001

“We have God as friend,” he said.

Some minutes later, and it being nearly 1:00 a.m., I told him goodbye. As I started to roll away, I heard, “I am Livio.” I could only smile and continue on. He will always be “Heart” to me.

After we parted, I thought about what he had told me through the tears: “No one respects me.” I’ve always struggled to define respect for the disabled, as it is new territory for me. Is it a lack of respect when an able-bodied person believes a wheelchair user to be incapable? Is it disrespectful to make assumptions about a person’s abilities or inabilities? These are difficult questions with complicated answers. Yet, I was only a few minutes away from understanding what he meant by respect.

As I approached my hotel, I saw at least 10 people walk through its front door without issue. When I arrived, the bellman stepped in front of me and demanded to see my key. Wow. Am I unfit to stay at a nice Parisian hotel because I’m a wheelchair user? Or am I just less fit than those who came before me?

I have always wondered what the greater purpose for my car accident was. Tonight, as I handed over my room key, those questions of “why” were answered. The purpose and reason for it all was made clear. All of us have value. I believe God knows it so why doesn’t society? The disabled community needs loud voices. I can be one of those. Through my website and through my own personal activism, I believe I can help to eradicate the stigma that is attached to disability. My heart is in it.

Will you join me?

Follow this journey on WheelchairTravel.org.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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17 Things I’d Tell Myself Before My Son With Autism Was Diagnosed

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Some of you reading this might be at the beginning of your journey with autism, or you might be further along than me. Maybe you have family members or friends whose lives are affected by autism in some way, or maybe you work hard each day to teach our kids in schools and colleges.

But each and every one of the kids who has brought you to this blog is uniquely wonderful, and so we’ll all have different journeys ahead of us no matter what. But I think so much of what we go through leaves us feeling similarly — confused, joyful and overwhelmed, to name but a few.

So wherever you are on your journey, know you’re not alone. Yes, things might be tough sometimes, but there’s so much more good stuff about autism than you may realize.

In fact, I was just daydreaming recently about having the power to time travel like Marty McFly of “Back to the Future.” What if I could go back in time and tell myself what I know now?

So bear with me on this one, as you’ll need to use your imagination a little. I’m going back a few years to tell the Michelle of 2007 a little of what the Michelle of 2015 now knows.

1. Acceptance and trusting your instincts will come with time. Michelle, it will take you a long time to accept what’s happening with your son. But I wish you could trust your instincts because your gut feelings are always right, and you’ll get better at standing up for your son as you learn to fight the system.

2. Never compare your son to other kids. Each child is unique and yes, they all have similarities, but he’s his own person. Your son may not join in all the activities like other kids do, but that’s OK. His talents lie elsewhere, as you’ll discover in the future!

3. It will feel like you’re on an emotional rollercoaster. No advice for that one, I’m afraid, but just know there will be good days and bad days. Just make the most of the good ones, because when they’re good, they’re really good!

4. Your priorities and goals will change. Your life can’t be mapped out now like you planned, and you’ll learn to accept and embrace that in time.

5. Home will become your child’s sanctuary. It’ll be a safe place where he can let off steam and be himself. And sadly, Michelle, you and your family will be judged, prodded and poked because of that. But your life does have to be different from the “norm.” You’ll learn not to care what others think about this.

6. Invest in ice pops. Your son is going to keep the supply and demand chain of ice pops in business for the foreseeable future.

7. People will judge you, but you’ll eventually learn to remove people like that from your life. Don’t carry baggage you don’t need. Everyone’s story is unique and no one really knows how it feels to be in the other person’s shoes.

8. There will be jumping, lots and lots of jumping. Jumping on the trampoline, on the bed, on the sofa, in the car, on the tables…

9. Please be kind to yourself. Things are going be tough at times and you’ll make mistakes, but that’s OK. You’re not superhuman. Look after yourself in order to look after your little man.

10. Don’t sit in meetings letting people tell you what’s best for your son. You know him better than anyone; you will learn take control of his future and not be so afraid to become “that mom.” He needs you to stand up for him in those meetings because he can’t do it for himself.

11. Your kid is not naughty; he has autism. They may appear as one and the same to some people, but you’ll develop a thick skin to that. It will still hurt when people don’t get him, but you have to accept that some people never will and move on.

12. Pajama days are necessary. Some days you’ll need a pajama day so you can watch Netflix and eat cake all day.

13. You and your son’s lives will be dictated by routine. You’ll plan days weeks in advance. You’ll approach his six weeks off from school like a military operation, with color-coded whiteboard pens, Post-it notes and cupboards full of white foods and ice pops.

14. Sensory issues will become a big part of your life. He won’t eat that, he won’t wear this, it’s too loud, that place is too busy, he likes to bounce, he hates brushing his teeth, etc. You’ll become a sensory-issues expert.

15. Your love for your kids is unconditional. No matter what happens, you’ll always have unconditional love for your kids.

16. Vodka and cola with ice and a slice… enough said!

17. Friends and family will get you through. They will laugh along with you on those amazing days when things are going well, and  they’ll be there to pick you up when things don’t go as well.

What would you tell yourself if you could go back to the future?

Follow this journey on A Slice of Autism.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Why ‘Is She Your First?’ Isn’t a Simple Question for Me

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Someone asked me a question the other day, a rather ordinary question: “Is Poppy your first?” The problem is it’s not a simple question for me, and it’s something I’ve had to get used to over the past three and a half years. Mostly I have a little way of saying the truth, but quickly — like pulling off a BandAid — so the other person doesn’t feel too awkward and scramble for something to say.

You see, no one expects you to say you have a baby who died; they’re expecting a quick exchange where everyone has some children, we all go “aww” and then we move on. But unfortunately, that’s not my truth, that’s not my story and I can’t lie — most of the time.

Poppy

It made me think back to when I was pregnant with my second daughter. A question like “Is this your first?” would send my mind whirring, trying to work out what the hell to say back. I would think: Are you worthy of hearing my story? Do I want to go there? How will I feel if I lie about this pregnancy being my first? What would Evie (my first daughter) or others think of me if I lied and feigned being a first-timer? How much time do I have? Who can hear what I’m saying — is this an appropriate place to talk about dead babies? You can see there was a lot to balance.

Then when I was going along to playgroups and starting to meet other new moms with my second brand spanking new baby girl — motherhood mark two — I often wished dearly I’d had a leaflet printed with my story neatly summed up with bullet points for easy reference. I could sadly shake my head and silently hand them the sheet of paper that said what I could not.

I remember once while going for a walk around our little town with baby Poppy, I decided to indulge my weakness for penny sweets and set off to the shop. That makeshift shop, cobbled together by its owners, was the perfect treasure trove to browse on a lazy afternoon stroll. As I selected and filled my paper bag with sweetie treats, an old lady — one of the staff — cooed over my delightful bundle of joy and asked if she was my first. Unsure of what to say and beguiled by the sweet perfume of confectionary extravagances, I panicked and admitted that no, she was my second and that my first baby died.

Rather than being shocked into submission, she began to ask a series of intrusive questions that rather stunned me. Questions like “Do you have pictures of the baby?” and “How much time did you spend with her?” floated around the little shopkeeper’s head like absurd speech bubbles. It felt like an out-of-body experience. I hurriedly paid for my sweets, their appeal now lost in the haze of conjured memories filling me up instead of sugary fluff.

I felt mauled as I staggered down the road pushing my baby, stuffing sweets into my mouth to stop from crying out that honesty should not be this painful. I decided I could say my second was my first in all future scenarios of this nature and vowed it would not matter to my firstborn – she would understand, if I could ask her.

I understand the lady was probably trying to be nice and sensitive by asking what others feared to probe, but I’m afraid I didn’t see it that way. The upset it caused me could not be justified by what I gained from it, and so I have strived only to discuss my story with others when I need support or feel able to answer their questions.

As the years have passed, I’ve developed a repertoire of scripts (mentally written and memorized sentences that describe what happened) to help me explain the unimaginable; they range from a 5-minute vignette to a saga lasting about an hour. It’s about self-preservation; “What’s the cost to me?” has become my new mantra. It helps me detach from what I’m saying in order to get through saying it.

So now when asked the question, “Is this your first?” I feel more confident in saying the truth. I can reply, “No, I have two daughters, but my first daughter died just after she was born.” I find it the simplest and quickest way to share my story — it has the salient facts and not much more. There’s no emotion either, which helps I think; they have no idea the cliff we’ve just jumped off when they ask me that question and by keeping the response minimal, it softens the landing. People can take what they want from my statement and usually their response is along the lines of, “Oh I’m sorry to hear that.” And often that’s all they say, which is OK — I’m sorry, too — or they fumble around for something deeper to say. The main consequence of conversations like this is that I end up swooping in to save them and trying to lessen the blow of my words, still hanging in the air above us like a threatening rain cloud, ready to rain on our pleasant conversation at any moment.

At first I really wasn’t OK with that. Why should I shield them from the horror I went through? They’re lucky they only have to listen to it; I had to live it. But over time my bitterness and anger at the world (because that’s what it really is) lessened, and my endless questions of “Why me?” have quietened. I don’t need to take it out on others anymore, so I can talk about my experience more openly and less defensively.

I’m more comfortable with my story now. I’m used to it now, so perhaps it’s starting to sink in that this is a part of my life story that I must weave in rather than try desperately to deny or reject. It’s a horror film I’ve seen hundreds of times — I know the scary bits, the bits to look away and leave the room to make a cuppa. I know the ending and over time I feel the raw shock has worn off sufficiently that I can cope with other people’s shock better.

The truth I’m coming to terms with is that it happened. My daughter was real and she died, and I have to learn to live with that if I have any hope of living life to the fullest without her, because of her… for her.

Evie

Follow this journey on One for Sorrows Twos for Joy.

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What the Medical Marijuana Debate Is Really About

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Julia, 8

The debate goes on — yes or no to medical marijuana?

As a parent who is currently giving my child medical marijuana for epilepsy, it’s hard for me to understand the resistance. The answer seems so obvious to me: why wouldn’t we try this?

But yesterday after reading responses to another mom’s blog on this topic, I started thinking that maybe the resistance is because people misunderstand our cause and misunderstand what this whole debate is really about. That is the only way I can make sense of the people who are looking in from the outside shaking their heads and poo-pooing this treatment option for reasons that seem either irrelevant or ridiculous to us parents. To me, the only way these comments make sense is that these people are entirely missing the point.

And the point is this: this debate isn’t even about marijuana; it’s about our kids! It’s about epilepsy! It’s about desperate parents looking for additional treatment options for our precious kids suffering through epilepsy. Period.

If you think those of us speaking out and fighting this marijuana fight are doing it because we love marijuana so much, you are wrong. We love our kids. And therefore we love anything that helps our kids. And right now marijuana is helping my kid. If kangaroo dung was shown to stop seizures, then you would be able to go ahead and consider me a lover of kangaroo dung.

Some have suggested that we marijuana parents aren’t being honest about whether or not marijuana is really working for our kids — that we’re enhancing reports on it’s effectiveness and lying about seizure control. I find this to be so insulting. Again, the only way I can make sense of someone saying something like this is that they fundamentally don’t understand what it’s like to have a child with epilepsy. They don’t understand this whole movement is about saving our kids from a devastating and deadly condition and that marijuana just happens to be one option showing some promise in helping our kids.

I know people who have moved across the country to Colorado and are camping — yes, camping — to try this treatment option for their child. Do you really think they would choose to camp over being in their own home if they didn’t think it was helping? I know families living separately with one parent in their home state working while the other parent is here living in temporary housing with their child because medical marijuana is the only thing that’s reduced her seizures. You think people would do that out of loyalty to a treatment option? No, they do this for the love of their child. You don’t make this type of sacrifice for a lie.

My allegiance is to my daughter Julia, not marijuana. I wouldn’t stick with something that doesn’t work because I so badly want her on marijuana — that doesn’t make any sense. What I so badly want is for her to 1) not die from a seizure and 2) not be miserable from the side effects of the drugs we give her to stop the seizures.

So if marijuana isn’t working or stops working, we will move on to the next thing that might help her. But we will also keep fighting for every other family to have the chance to find out if it might work for their child.

Haleigh’s Hope: 23:1 CBD to THC

Seizures are tricky, folks, and perhaps that’s another thing non-supporters don’t understand — seizures keep finding a way back, especially for the population I’m talking about here. I’m not talking about a child who had one seizure as a baby because of a fever. I’m talking about kids who have been experiencing seizures daily for their entire lives. For these kids, seizures are relentless and they keep coming back. Therefore we have to keep trying to find new ways to fight them off. Right now, there isn’t a cure; there is only treatment after treatment, and so we need a long list of treatment options. We need a deep bench. I believe everyone in this battle should have the right to add marijuana to their list of options — again, not because we love marijuana but because we love our kids.

We’re not talking about marijuana with the general public is not to change minds. I honestly don’t care if I change your mind about marijuana. Feel the way you feel about it. No, the reason we’re going public with our stories is because we have to try to change your mind about allowing it to be an option for families like ours. I don’t think your dislike or doubt or need for more evidence should to have the power stop families like ours from being able to try and save our child. We want the ability to try. That’s all we are asking for.

For those of you claiming you need more research to be convinced, we don’t have time for the years and years of research you require to give us your blessing on this issue. What will years and years of more research do for us anyway if you really think about it? It will give us a big, fat, inconclusive maybe. “Maybe this drug will work for your very complicated child.” Which is exactly what we have now with every other drug out there to treat epilepsy — we have a “maybe.” Maybe Keppra will work, maybe Topomax will work, maybe Sabril will work, maybe Banzel will work, maybe Valium will work, maybe Lexapro will work, maybe the keto diet will work, and on and on and on. These options have years of research behind them, and guess what we still get? A maybe.

So why would you require us to sit around twiddling our thumbs, watching our children seize, their lives at risk with every single seizure, just for the research to confirm what we already know — everything is a maybe.

Please, when you hear this argument and read our stories don’t make it about your personal feelings regarding marijuana; make it about these kids, make it about access to treatment, make it about the right to try, make it about parents trying to save their kids’ lives. And if you’re brave, maybe for a moment make it about you or someone you love being in our shoes. Wouldn’t you want people to give you the right to try?

You don’t have to love it, you don’t have to agree with it — but please do not block it.

Follow this journey on I’m Julia’s Mom.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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