Model Responds to Cafe That Allegedly Kicked Out Her Sister With Special Needs

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Russian supermodel Natalia Vodianova is no stranger to the special needs world. The Calvin Klein model started the Naked Heart Foundation, an organization that builds accessible playgrounds in Russia in 2004, and volunteered at the Special Olympics World Games in Los Angeles this summer.

Wednesday, Vodianova spoke out for a different reason. The model’s sister Oksana, who has autism and cerebral palsy, was allegedly kicked out of a Russian cafe because of her disability, according to Vodianova’s Facebook post. Oksana, 27, and her nanny were resting in Flamingo cafe after walking around for an hour. According to the Facebook post, the cafe owner told the nanny “go and get treated and treat your child, then you can go out in public again.”

Vodianova’s mother came to the cafe, appalled at the situation, to find Oksana surrounded by three security guards. After complaining to the owner and leaving the restaurant, Vodianova’s mother was allegedly told by police that she was being arrested for hooliganism. She was taken to the police station to be questioned, while the cafe owners had no consequences, according to Vodianova’s Facebook post.

Vodianova is using this event to raise awareness for people with special needs in Russia. She expressed her feelings (see below) in her Facebook post, which has garnered more than 100,000 likes and 43,000 shares:

I am deeply insulted on behalf of my mum, Oksana and her nanny, who dealt with the situation so stoically. Those who discriminated against them and violated their rights and dignity should have been taken to the police station, so was my mother taken there instead? I want to appeal to everyone – let’s try to ensure that people with special needs and their families have happier lives. Let’s support their dedicated teachers and specialists who work with them every day; let’s support them so that the results of their work resonate beyond the walls of schools and rehabilitation centers; let’s extend this work the wider community.

Дорогие,Ситуация, которая вчера произошла с моей родной сестрой Оксаной, не единичный случай, к сожалению, это та реал…

Posted by Natalia Vodianova on Wednesday, August 12, 2015

You can read an English translated version of Vodianova’s post here.

h/t BBC News

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When a Woman Told Her Little Girl My Son With Special Needs Was ‘Sick’

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As the mother of Matthew, a young man with a developmental disability, I often had to “handle” strangers who chose to make comments about my son in front of him.

Matthew wasn’t stupid and he wasn’t deaf. And he understood everything that was said.

The absolute worst example of this happened when my mother, Matthew and I were in the fruit and vegetable store of a posh mall. Matt was a teenager at the time and small for his age. He was impatient for me to finish my shopping and get the ice cream I’d promised.

Because he didn’t used words to express himself, his communication methods — loud grunts and hand signs, which only a select few understood were unusual and probably strange to many. But his challenges were obvious and he was a handsome young man. I liked to assume that strangers “got it.”

Not always. Sometimes people — in this case, an older, well-dressed lady with a child of about 7 weren’t as savvy. 

The little girl watched Matthew gesture and call to me, as any child of her age would and did. I smiled at her, took his hand and continued shopping.

The woman, standing nearby, pulled the child away. “Don’t go near him, he’s sick,” she said. Then she led her out of the store.

I signaled to my mother. She knew what I was about to do and took Matthew’s hand. “Don’t upset yourself further, dear,” she said. “That woman isn’t worth it.”

I stood and thought a moment. My mother was right. She wasn’t worth it. But her child was.

I ran out of the store and soon caught up. They were only a short distance away.

“Excuse me,” I said, stopping in front of the woman. “You have done this little girl a great disservice.”

She stared at me.

“You gave her information that will damage her view forever of people like my son, Matthew.”

The woman clutched the child’s hand.

I bent down to the little girl and smiled. “Honey, I really, really, really want you to know that the boy you saw just now is not sick. He has an intellectual disability. I know his voice sounds different to you. He was asking for an ice cream cone.”

The child smiled.

“Do you like ice cream?”

She nodded.

“See, honey. Matthew is just like you.”

I stared into the woman’s eyes for longer than I should have. Then I walked away.

Follow this journey on Donna Kirk’s blog.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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The One Choice I Regret Making While Raising My Nonverbal Son

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I have few regrets about the choices I’ve made raising my non-verbal son, Aidan, who has a developmental disability. It’s been an intense lesson in winging it, gathering as much information as possible, filtering it through layers of emotion and making the best decision I could at any given moment.

I do, however, regret not giving Aidan a voice sooner.

We followed what now I’m seeing to be the party line. We got an AAC (augmentative and alternative communication) evaluation that was neither particularly helpful nor decisive. We hesitated, wanting to be sure that if we were going to spend yet another chunk of medical money that it would be on the right device. We waited with hope, wanting Aidan’s muscles to get stronger and for him to finally speak. We sat in a puddle of overwhelming chaos; there were just too many other circumstances vying for my attention.

So I said what most other parents of non-verbal children say: “He communicates in his own way. We’re lucky he’s so social and animated. We understand what he wants.”

I feel so emotionally conflicted about hearing those words now. On the one hand, I want to shout,  “DO NOT WAIT.” Babies are born being inundated with language and attempting to communicate. Your child deserves no less. Yes, using a device can feel different and medical and awkward, but it’s also about early access and “listen to me” and “watch me learn.” I’ve had animated conversations that end with me whipping out my iPad and all but screaming, “This has changed our lives.” Because it has.

But still I get it. I have tons of compassion for those who doubt or hesitate or are just too overwhelmed to give their child words. I’m still that mom. There will always be something I’m not doing well or soon enough or right for Aidan because his needs are many and complex. It’s hard to add something new to the day. It’s emotional to wonder if it will ever be useful. I’m making the best decisions I can in any given moment.

I was thrilled when Aidan quickly and consistently used the first three highly motivating words I opened for him on his talker: EAT, DRINK, MORE. I slowly gave him more words and then stopped for awhile. This summer I wanted to make a thoughtful decision about what one or two words I would open next. But then I got excited and thought, “No more regrets.” I opened almost 15 new words.

I started modeling them right away.

Mommy gets FRUSTRATED when you throw your spoon.

Look, your toys are all over the FLOOR.

Should we ask Liam to DANCE?

And still I doubted. This wasn’t a well-thought-out plan. Were these the right words? Is it too many at once?

The same day I opened these words, the same day I showed him where they were on his talker, this happened: We finished dinner and I was really ready to start the bedtime routine. Aidan reached for his talker and said, KITCHEN, HUNGRY, EAT, MORE.

Two new words and two old standbys.

A mis-hit? A mistake? Gibberish?

I think not. Let there be cake.

And there was.

Follow this journey on Family Synapse.

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Why I Owe My Son With Autism a Huge Apology

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Dear Son,

I owe you a huge apology. In fact, I’ve even whispered this apology in your ear a few times in the past several months.

I’m so sorry for doubting you.

When you were diagnosed with autism a little over a year ago, I doubted what you would be able to do. Honestly, despite you proving me wrong… I still doubt sometimes.

I never thought you would be almost completely potty trained at 3 and a half years old. That’s huge. Plenty of typically developing kids have trouble with potty training.

I never thought you would be comfortable doing all the things you’ve done so far this year. I’ve sheltered you so much, trying to protect you, but more so because I doubted. Your progress has been amazing and I am so proud of all you have accomplished.

You went to the beach for the first time and absolutely killed it. You didn’t mind the sand or the heat. In fact, you didn’t want to leave.

You enjoyed a trip to a crowded mall and loved every minute.

You are babbling and trying to figure out language.

Your receptive language and overall communication has improved.

Your curiosity is blooming.

Your social skill have improved.

Your iPad skills are amazing.

You can swim. You are still a toddler. You are nonverbal. You have autism.  No one taught you. You didn’t receive the first lesson. You can almost swim the full length of our swimming pool both under and above water — no flotation devices. Just pure, unbridled, determination. The only help we have provided is praise and encouragement. You did the rest.

I’m so proud of you, Drake. You’ve taught me more on this journey than I will ever teach you. Yes, we have a long way to go, but the progress in just one year has been astonishing. Your team of therapists have worked so hard to help you gain confidence and independence. More importantly, you have worked hard.

I can’t wait to see what you will do with your life. You have proven that you can do anything, and I’m proud of you. As your mother I am your biggest fan. Forgive me for ever thinking for one second that you can’t or won’t be able to do whatever you want in this life. Keep proving me wrong, son. Keep proving me wrong.

I need your encouragement far more than you need mine.

Love,

Mama

Follow this journey on Walking With Drake.

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The Type of Sensory Overload I Find Enjoyable

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Sensory overload isn’t just the clock ticking on the wall or the humming of the lights in Walmart. It’s not just the ear-piercing shrill of a baby’s cry or the sound of a crowd of children.

Sensory overload isn’t just the pungent odor of a skunk or a woman’s perfume that literally burns your nose. It’s not just the smell of a person across a crowd who may have forgotten to apply deodorant or the unidentified odor that drives you crazy until you’re able to figure out what’s causing it.

Sensory overload goes way beyond the basic senses. For me, they’re feelings I have tried to explain for so long but could never find the words. They’re sensations that are triggered not just by sights, sounds and smells but by people and objects, too.

I believe children and adults on the autism spectrum disorder can read people in different ways than others. If there is something “off” about a person, it might be noticed immediately. I’m not referring to just a vibe. It is more like a sixth sense.

I’ve found the same goes for a person I may have a strong emotional connection to. Whether it’s a person of the opposite sex (not just romantic), a mentor, a friend, a teacher, a therapist or a co-worker, certain people have a way of touching me in ways that can’t be explained.

You see, sensory overload isn’t always a negative experience for me. My special relationships — which are few and far between — have the ability to cause profound sensory overload. It’s an aura that’s difficult to explain. The sensations I feel are overwhelming and heartwarming at the same time.

Throughout my life, I’ve come across people who I’ve been able to identify with based on experiences. These people genuinely care about me and my well-being. An attachment — for lack of a better word — is formed with certain people who have the ability to trigger an extreme physical response. It reminds me of the butterflies and excitement you feel when you start dating someone. But it’s much more than that.

Meghan Scarfo the mighty.2-001

Neurotypical people may find these sensations difficult to understand. I have a hard time explaining it myself. A simple message, phone call or hug from the person with whom I feel this way produces a response that makes time stand still. It’s an overpowering tingling sensation or warmth coupled with heart palpitations. A truly unexplainable experience. The moment may be brief or long-lasting, but it’s very intense.

This type of sensory overload is extremely powerful, yet enjoyable. Caught in a daze or a “fog” so to speak, everything pauses around you for that moment.

I’d like to think of this sense as a gift. It’s an ability to connect with someone on such a level that is unheard of.

Perhaps other people don’t speak about this sense for fear of jeopardizing relationships. Perhaps people fear that neurotypical people will turn away from them.

Personally, I feel as though this sense is a blessing. It’s an ability that should be discussed, explored and researched.

My hope is that others on the spectrum are able to identify with these feelings and breathe a sigh of relief.

Follow this journey on Open Your Box.

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I’m a Mental Health Therapist. And Now I’m Also a Patient.

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I’m a mental health therapist.

I work with children who have behavior and mental health concerns. I’ve completed grad school and have been working in this field for four years. I’ve been trained in different evidence-based therapies. I’m an outpatient therapist, mobile therapist, behavior specialist consultant and meetings facilitator.

I’m also a patient.

I struggle with anxiety, depression, obsessive-compulsive disorder (OCD) and in the past had an eating disorder. It’s funny how I can deal with other people’s mental health issues all day, but when it comes to my own it’s so hard. After hitting a particularly rough patch, it took me many months to seek therapy for myself. Months more to go to my primary doctor to see about changing some of my medication. A year more to make an appointment to see a psychiatrist. This appointment was the hardest. You see, I’m the one who does the assessing. I’m the one who hears the stories and offers support and counsel. I recommend for a child be evaluated by our psychiatrist for medication.

I’m not the one who gets evaluated. Being the patient was an eye-opening experience. 

I finally called the psychiatrist to make the appointment and left a message. Days went by. Anxiety increased. Finally I got a call from the doctor to schedule. It was a bit of an awkward conversation. I answered my phone using my nickname, which threw the doctor off. I then thought he asked me if I knew my address, which I thought was odd, but I started to give it to him. He’d actually asked if I knew the address of his office. “Um no, that would be helpful.” He asked, “Any questions?” to which I wanted to respond, “Do I really have to do this?!” but asked instead how long he thought it would take. I needed to prepare myself for how long this “torture” would last. We said our goodbyes, and the dread of the appointment started in earnest. My desperate desire to feel better was the only thing that kept me from canceling.

I hear other people’s stories all day, but it’s not nearly as scary as having to share my own — to be open and vulnerable with a virtual stranger. The more my clients tell me, the better I can help them so I knew the more I told him, the better he would be able to help me, but all my defense mechanisms were screaming to minimize everything, to shrug it off, to only give the basics. The day of the appointment arrived, and I felt surprisingly calm. I wasn’t feeling well physically so maybe that took my mind off things. Well, that and the Ativan

Once I got to the waiting room, a man came out and said, “The doctor will be with you shortly.” Before I was ready, another gentleman came out and called me back. I sat on the proverbial couch and immediately wished for some of the Silly Putty I give clients to use when they’re feeling anxious or distracted. I needed something to do with my hands. I crossed my legs, and my foot would not stop shaking. I realized what I was doing. I realized the doctor would note this, as it was something I would note if I were with a client. But I was powerless to stop it. So there I sat, fidgeting with my hands, legs shaking, trying to keep my breathing even and calm. Then the dreaded, “What brings you here today?” I resisted the urge to sarcastically reply, “Look at me! What do think brought me here today?! I’m a basket case.” I answered honestly though. I often will use humor when I’m uncomfortable and nervous. This doctor was kind and compassionate but did not laugh at my attempts at humor. He just waited until I gave a serious answer. Insert awkward silence.

Overall I was pleasantly surprised. It was refreshing to be able to talk and not be the one who was supposed to have the answers. To not have to reciprocate with, “and how are you?” like I would with friends. He asked questions, and I talked. He demonstrated he was listening by following up with relevant comments or questions. I felt heard for the first time in a long time. He understood that my job is not high paying and further reduced the sliding fee scale for me. He ended the evaluation by asking if he could pray with me. And he did while I fought back tears because I was determined not to be the stereotypical patient who cries in the psychiatrist’s office.

I know everyone has a different experience, but mine ended up being a positive one. I not only took steps forward to improve my own mental health but also got a glimpse into what my clients and their families must often feel and experience. I still would rather be the one giving the counsel, but being on the other side of the desk provided me with invaluable insight and understanding.

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