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The Story of Caring when Special Needs Parents Need Help

Autistic Meltdown Story

 “And here came Jen to the rescue.” Lenore Koppelman was describing how Jen Whelchel, a Universal Orlando Islands of Adventure employee, stepped in to handle a difficult situation. 


The incident happened on May 29th at the Spiderman ride. Lenore recounted what happened in a Facebook post. Here is an excerpt:


I would like to share something incredibly special with you all. A day we will never forget. Today we took our little boy Ralph to Universal Orlando Resort for the first time. Ralph is awesomely autistic, and we are proud to be a neurodiverse family. 


As wonderful, loving, intelligent and incredible as Ralph is, sometimes he struggles. (Don't we all?) When he struggles the hardest, he can have something known as an "autistic meltdown." 


Some people who are not educated about autism might see it as a temper tantrum. But the fact of the matter is that it is not the act of a spoiled and naughty child. It's a cry for help. This is Ralph's way of saying "I don't know how to monitor and regulate my emotions right now. I need help, please! I'm scared! I'm overwhelmed! I want to feel better and I don't know how!"


Just as Ralph was about to board the Spiderman ride, it broke down. After patiently waiting the entire day to ride, he totally lost control of his emotions. In Lenore’s words:


Ralph collapsed onto the floor while crowds of people were attempting to exit the ride and the gift shop attached to it. He began sobbing, screaming, rocking, hyperventilating, and truly struggling to breathe.
That’s when Jen rushed over. After quickly assessing the situation, Jen laid down on her back next to Ralph.

She rested next to him while he cried his heart out, and she helped him breathe again. She spoke to him so calmly, and while he screamed and sobbed, she gently kept encouraging him to let it all out. She told people to keep on walking around them, so they would stop standing there and staring. And then she told him it was okay for him to be sad and feel this way. She understood. She would feel the same way too. His feelings were validated. And she told him he could lay there with her as long as he needed to until he felt better.

Did this example of warmth and competence resonate? Lenore’s heartwarming Facebook post has garnered over 10,000 comments, 40,000 shares and 100,000 reactions in the last two weeks.


Putting H.E.A.R.T. into Customer Experience


Lenore’s Facebook post also recounts the efforts of other Universal employees who also impacted Ralph’s day in a caring and positive way. 


Jen Whelchel and her colleagues demonstrated what I call H.E.A.R.T. when delivering this high level of service. It breaks down to five elements:

  1. Helpful - Great service is about the mindset of helping others. Smart employers hire for this trait. According to Herb Kelleher, founder of Southwest Airlines, “You can’t make up for in training what you missed in hiring. You hire for attitude, train for skill.” You can't train employees to be helpful and care. In Kelleher's view, "That was Mom and Dad's job."
  2. Empathetic - Empathy is caring and the ability to feel what your customer is experiencing. Jen did this by laying down and validating Ralph’s feelings, literally on his level.
  3. Aware - Awareness is the ability to assess the situation. Although Lenore wanted Ralph to get up, Jen knew that it was important for him to stay on the ground.
  4. Responsive - Rushing over indicated Jen’s willingness to help. Moments matter. Speed is important when addressing a difficult situation.
  5. Trained - Lenore recounted, “Thanks to Jen, and her knowledge about what to do. I asked her how she knew how to do that, and she told me that everyone at Universal Studios gets special training when it comes to people who are awesomely autistic, as well as other special needs.” Jen was also given the training and the authority to do what she thought was right by the customer. After Ralph settled down, she and fellow team members treated him to some complimentary items in the Spiderman gift shop.

Do you have employees with the H.E.A.R.T. to lay down for customers?

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Special Needs Parent

Special needs, community, support, fundraising, autism, community support,

Steve Schroeder Founder of SCT is a Special Needs Parent

BECAUSE I AM A SPECIAL NEEDS PARENT


You see me in the office and wouldn’t know I run on three hours of sleep every night. Because I am a special needs parent.


By the time I get to work in the morning I have fought battles, cried, laughed, overcome, and failed. My day started hours ago. Because I am a special needs parent.


I strive to ensure schedules, order, and consistency for my child who thrives on such things, while embracing the chaos of an ever changing and unpredictable disability. Because I am a special needs parent.


I have learned of a deeper kind of love than I could have ever imagined. Because I am a special needs parent.


I bear scars down my arms from my child’s aggressive meltdowns but they do not compare to the pain inside my heart as I’ve had to restrain him from hurting himself or others. Because I am a special needs parent.


There is an incomprehensible joy that floods my soul when my child takes me by the hand or looks me in the eyes. Just one touch from his hand gives me hope that one day a touch will turn into a look, a look into a gesture, a gesture into a word, and a word into the ability to communicate. This burst of joy is strong enough to give hope that presses on until the next time. Because I am a special needs parent.


Exhaustion sets in as I fight for the rights of my child. He is worth believing in. He is worth being given an education. He is worth being given every opportunity to reach his full potential. It is my daily task to ensure this happens. Because I am a special needs parent.


I long for connection with others yet feel so alone and wonder who could ever understand this beautiful, crazy life we live. Because I am a special needs parent.


There is no achievement too small. I have learned to celebrate even the smallest of things: One word spoken, an independent bite of food taken, a hug given…these are monumental in our world. Because I am a special needs parent.


I know his facial expressions by heart and can most often predict their meaning. I understand the “gibberish” that many hear when he speaks. I know what songs bring him peace and what sounds set him off. I know when it’s time to go and when we can stay a little longer. Because I am a special needs parent.


I fight for my marriage as the stresses of disability and all that it entails wedges its way into our time for one another. Tensions are high and patience is low. We learn to be extremely intentional in our pursuit of each other. I know how extremely blessed I am to have a husband to walk this journey with me. Because I am a special needs parent.

Just his smile is enough. It lights up my world and fills my heart. Because I am a special needs parent.


There is a balance I’m constantly struggling to find as I strive to give time, attention, and affection to my little girl who is not disabled. Because I am a special needs parent.


I fail at being a good friend, keeping up with family members, remembering birthdays, and finding time to socialize. Because I am a special needs parent.


I plead with the Lord on behalf of my son. Every night I present my requests to Him knowing that He is fully capable of healing my son, but also trusting Him if His answer is “no” or “not yet”. Because I am a special needs parent.

Considering all these things, I would do it all over again. This precious child the Lord has entrusted to me has taught me more about life, love, and what matters most. Because I am a special needs parent.


Though many times I feel so very ill equipped, I know that God has specifically chosen me to be the momma of this precious little boy. God is not in the business of making mistakes. So I trust Him and lean on him for the strength to press on. Because I am a special needs parent.


About the Author:


Nichole Huggins is a wife and mother of two. As the parent of a special needs child, Nichole willingly discloses the trials, triumphs, and life lessons of having a child with autism. She writes at LoveinaDifferentLanguage.comwhere she offers insight and hope as she shares about parenting, autism, and the faith that holds it together.

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A CHANCE TO BREATHE

July 13, 2018 by Irresistible Church


Families across the country look forward to summer – a time to break from school, take vacations, and enjoy the sunshine. But for many families affected by disability, summer offers no respite from the seemingly endless therapy appointments and caregiving duties. 


Finding a place for rest and relaxation can be a true challenge for these families, which is why Joni and Friends hosts Family Retreats across the nation throughout the summer. Family Retreats are a place where special needs families receive encouragement and care in the comfort of a safe and accessible family camp environment. 


They enjoy fun and fully-accessible, age-appropriate activities, along with meaningful conversations with families who understand the challenges of life with disability. Some of the families who attend Family Retreat look forward to this time of fellowship and fun throughout the entire year.


Allow us to introduce you to Ellen, a single mom with two kids. One of her children, Anna, is a beautiful girl who has Down syndrome. Their family faces daily difficulties because of Anna’s disability, but Family Retreat allows them the opportunity to have fun and connect with other families in similar situations. Watch this short film on Ellen, her family, and their experience with Family Retreat.

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How to Meet Autistic People Halfway

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How to Meet Autistic People Halfway

By Vikram K. Jaswal and Nameera Akhtar


The authors are psychologists who study the social lives of autistic people.

· July 13, 2018


Children in a third-grade class that integrates children with autism with general education students, at the Academy of Talented Scholars in Brooklyn. 


One of the most widely held beliefs about autistic people — that they are not interested in other people — is almost certainly wrong. Our understanding of autism has changed quite a bit over the past century, but this particular belief has been remarkably persistent.


Seventy-five years ago, the first published account of autism described its subjects as “happiest when left alone” and “impervious to people.” Even now, a National Institutes of Health fact sheet suggests that autistic people are “indifferent to social engagement,” and the Centers for Disease Control and Prevention claims that some “might not be interested in other people at all.”


There is no question that autistic people can seem as though they are not interested in others. They may not make eye contact or they may repeat lines from movies that don’t seem relevant in the moment. They may flap their hands or rock their bodies in ways that other people find off-putting. But just because someone appears socially uninterested does not mean that he or she is.


As we point out in a paper published last month in Behavioral and Brain Sciences, many autistic people say they are very interested in, and in some cases desperate for, social connection. They experience loneliness, say they want friends and even prefer two-player games to one-player games. As the autistic author Naoki Higashida writes, “I can’t believe that anyone born as a human being really wants to be left all on their own, not really,” adding, “The truth is, we’d love to be with other people.”


So why do autistic people act in ways that make it appear they want to be left alone? Autism is a neurological condition that affects how people perceive, think and move. Autistic people say that some of their apparently unsociable behaviors result from these neurological characteristics. Paradoxically, they may behave in these ways when they are trying to engage with other people.


Take eye contact. Some autistic people say they find sustained eye contact uncomfortable or even painful. Others report that it’s hard to concentrate on what someone is saying while simultaneously looking at them. In other words, not looking someone in the eye may indicate that an autistic person is trying very hard to participate in the conversation at hand. Unfortunately, this attempt to engage often gets interpreted as a lack of interest.


Or consider another common autistic behavior: echolalia. People who say the same thing over and over again can appear socially disengaged, but this does not mean that they are. Sometimes autistic people repeat phrases as a way of connecting at a deep level. For example, one autistic boy repeated, “Chicken Little thought the sky was falling, but the sky is not falling” when his mother was despondent over the death of a friend.

Wrongly assuming that someone is not socially motivated can have devastating consequences. Being sociable is widely considered to be a fundamental part of being human. The presumption that autistic people are not sociable effectively dehumanizes them.


If you assume a person is not interested in interacting with you, then you probably won’t exert much effort to interact in the first place. This can lead to a situation where neither person wants to interact with the other. Or you might insist that he or she interact in the ways you expect socially interested people to interact. Some popular autism interventionsrecommend that parents and teachers attempt to train autistic children to make eye contact or to stop repeating themselves or flapping their hands. The problem with this is that the neurological makeup of an autistic person may make it difficult or impossible for him or her to do so.


Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors and, eventually, social withdrawal. As an autistic participant in one study explained: “I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior. There’s a point where you say, ‘To hell with it, it’s impossible to please you people.’”


The danger of being assumed to be socially uninterested is especially acute for the roughly one-third of autistic people who do not use spoken language reliably. Like other autistic people, they behave in ways that get misinterpreted, and they may not be able to correct the record.


For all of us, whether we are socially motivated at any given time depends on much more than our innate predisposition for sociability. It also depends on how we’ve been treated in the past; our ability to tune out distracting sights, sounds, smells, thoughts and feelings; and the attitudes and behaviors of potential social partners.


Autistic people have been making the case for decades that they are interested in other people, and that they do not intend their unusual behaviors to indicate otherwise. So when someone does not make eye contact or repeats something you just said, be open to the possibility that it is just his or her way of trying to connect with you. Improving the social lives of autistic people will require putting aside assumptions about how social interest is expressed and recognizing that it can be shown in unexpected ways.


Vikram K. Jaswal is an associate professor of psychology at the University of Virginia. Nameera Akhtar is a professor of psychology at the University of California, Santa Cruz.







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THANK YOU FOR LETTING OTHERS LEARN FROM YOUR CHILD

July 23, 2018 by Leave a Comment


Jesus called them to him, saying, “Let the children come to me, and do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” –Luke 18: 16-17


What an honor it is that you share your child with others. Your child has taught me innumerable lessons. Parents, you fight for your child every day, fighting for acceptance, for fair treatment, for kind words. I am so honored when you allow and trust me to take care of your child, your prized possession. Thank you for sharing your treasure with me.


Parents, thank you for the opportunity to learn love through your child. Your child has taught me that love is shown a million different ways. Through a grasp of a hand, through a hug, through a smile, through light dancing in their eyes – love is communicated. “Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.” –1 Corinthians 13:4-8


Parents, thank you for the opportunity to learn patience through your child. Your child is so patient. Through my mix-ups, wrongdoings, mistakes, your child has given me grace. They have laughed with me at my mistakes, let me know I’ve messed up, repeat what they’ve said for the fifth time, and, most importantly, allowed me to try again, to enter back in. “Be patient, therefore, brothers, until the coming of the Lord. Behold, we consider those blessed who remained steadfast.” –James 5:7, 11


Parents, thank you for the opportunity to learn joy through your child. Your child’s smile is powerful. It shakes my joy, reminding me that I have no reason to not be joyful. Your child’s squeals of delight, claps of jubilation, jumps of glee, challenge my hushed joy. Your child reminds me that the struggles of this life are only temporary. We know the end! We can have joy in the midst of suffering because Jesus Christ overcame. He is victorious. “Clap your hands, all peoples! Shout to God with loud songs of joy!” –Psalm 47:1


Parents, thank you for the opportunity to be challenged by your child. Your child challenges me in my every day faith. Your child’s love, patience, joy, and their simple existence causes me to question the desires and fears of my heart. My selfish, complaining spirit is revealed in the light of their peace. The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid? – Psalm 27:1


Thank you for sharing your child with the world. They teach so many lessons. I thank God for your child and thank you for letting me get to know them.


Emmalyne Kwasny is a senior at Mississippi State University and serves as editor-in-chief of the university’s student-led newspaper, The Reflector. Emmalyne volunteers with Joni and Friends Mississippi and is currently interning with Joni and Friends Cause 4 Life.

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