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Archive for the ‘Personal Tales’ Category

Meeting Donovan Smith

I had the amazing opportunity to have a private meet and greet with Tampa Bay Buccaneers starting offensive tackle, Donovan Smith. As someone who has loved football my entire life, I was very excited to meet a player for the first time in almost 15 years.

 

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Donovan Smith and I at One Buc Place

 

 

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Me with the Bucs’ Lombardi trophy

Donovan Smith was drafted in the second round of the 2015 NFL draft by the Bucs, and in that short time has already become one of their best young stars; and he’s not that much older than me! I didn’t get to speak with him for too long, but he seemed like a genuinely good guy who cared what we had to say.

 

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Raymond James Stadium on a beautiful Friday night.

 

It was a really great game, and an even better experience overall. I brought along one of my best friends, and we had fun cheering on Donovan and the Bucs against Cleveland. The Bucs ended up winning 30-13. I was even on the Jumbo-tron at one point, which has never happened before at any sporting event I’ve attended.

 

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Me with front row tickets to see the Bucs dismantle the Browns

Thank you Donovan for this great opportunity!

  • G. Sosso

Preparing for College with Autism

Speaking from personal experience, I know that going off to college as a young adult on the autism spectrum can be an overwhelming prospect, one that many will not be able to overcome. The thought of leaving home for college is scary for every high school graduate; I mean, we’re still kids at that point. But considering the unique challenges that face so many on the autism spectrum, it can be exponentially more difficult. My first attempt at university immediately following high school was, to be completely honest, a train wreck. However, I believe that every failure you make it through brings you one step closer to success, and I learned and grew a lot from that time. Now almost three years later and with much more experience and knowledge under my belt, I have a far better understanding of what it takes to be successful for those with autism looking to make it in college. I would like to share these thoughts with you all, in hopes that it will give you a better idea of how to overcome certain obstacles.

The main issue that I and so many others face is the sudden leap into independent living. No longer will mom and dad be there to bail you out of your problems, or sit you down and force you to do your homework. It’s harsh, but that’s just the way the world works. Preparation BEFORE going to college is absolutely essential. Now, assuming you were diagnosed with a disability before the age of 16, you should have had an Individual Education Program (IEP) set up throughout high school. The IEP is all a part of “transition planning,” which, according to this article, is training or experience, “from hygiene to banking to job training, driver’s education, sex education, college admissions and more,” all things which are never really covered in school, but are immensely important life skills.

But it doesn’t stop there; in fact, the journey is just beginning. Once you get to school, there are plenty of resources available to you, and it’s essential that you utilize them as much as possible. At USF, there’s the Students with Disabilities Services and just about every university has something similar. These people want to help you, but it’s your responsibility to go to them, they will not come to you. If you take away any one thing from this, it’s that you need to become an effective self-advocate. Is there pressure on you to take on more of a workload than you’re comfortable with? Make sure to let the advisor know. You only have to take a few classes at a time, there’s no rush to finish college as soon as possible.

On the Autism Speaks website, there’s a large and comprehensive list of resources for post-secondary education that I suggest you take a look at. Most importantly, remember to relax and pace yourself, stress can ruin your life in college if you let it!

  • G. Sosso

Meet Olando Rivera: Where Kickboxing Background & Autism Connect

Last week, I had the incredible opportunity to interview one of the most prominent dads in the Tampa Bay autism community, Olando “The Warrior” Rivera. The former kickboxer, whose record boasts several championship titles, now is a successful business owner running the B.A. Warrior Gym and soon opening the Warriors for Autism Fitness & Sensory Center specifically designed for individuals with special needs. The center inspired by his own son and other children on the spectrum will have a sensory room, zip line, rock wall and various activities that are geared toward children and young adults with sensory sensitives.

As you can imagine, I was a little nervous meeting someone with his résumé, but it turns out he was a really nice guy who seemed to genuinely care about all the kids that walk into his gym. As I was listening to his story, I couldn’t help but feel like it could be the plot to a movie; star athlete who had it all, life tries to knock him down, comes out in the end happier than ever, knowing family is more important than anything else. Listed below are the questions I asked Mr. Rivera, followed by his responses. Hope you enjoy!

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Coach Olando helping a young boy on the Sensory Center’s rock wall

 

Q: Please describe your mission here at the B.A. Warrior Training Center. We can all read it online, but I’d like to hear it straight from your mouth.

A: “The mission here, our vision, is to have a place where the kids can come in and have fun, but at the same time, not feel like they’re overwhelmed with all the noise. I can’t have it loud and noisy in here, or have a lot of bright lights, because as you know, I have an autistic son. He’s 17 now, and I want him to know that when he comes into this room, he can have fun and not squint his eyes or cover his ears and stuff like that; I’ve been through this with him his whole life, so I understand what he needs. I basically designed this place alongside my wife with the thought of helping these kids, and my son, to not only have fun, but to get some exercise. Can’t get in shape when you’re sitting at home on the computer!”

 

Q: What sort of growth do you usually see in your disciples, from when they first walk in here to when they leave for the last time?

A: “That’s another reason why I’ve been so inspired to do this program. Since I started this back in 2000, what I’ve seen throughout the years with all the kids that have come through those doors to train with me, is that when they got here they were very shy and scared, and didn’t know what they were getting into really. I’ve seen them transform from that into saying, ‘Hey this is so fun and cool!’, and it had to do with simple things that I did to help them, which I’ve also done with my own son. I figured if it works for him, I could probably duplicate it with other kids. Why not help as many of these kids as I possibly can? The best feeling is when I see some of them go from non-verbal to verbal, and actually say, ‘Thanks coach!’, it’s magical. It shows how much they truly do care. The key, I believe, is the eye contact. Once you’ve established that, and they’ll look at you right back, you know you’ve gained their trust.”

 

Q: How did getting that initial diagnosis for your son change things for you and your family?

A: “That one’s really close to the heart. When we found out, we didn’t know what it was. Who did? He was 5 when we found out, so going on 12 years now. The first thing that came to my mind was, ‘I’m a champion athlete, why does my son have something like this?’, and it was hard for me, as a man, to wonder how could he have gotten this from me when I’m so healthy? It caused a lot of problems between me and my wife; shifting the blame on one another, going back and forth, it was bad. But through the grace of God, we realized fighting wouldn’t solve anything, and that he’s our son and he needs us to help him. Being completely honest, I was in denial about it, thinking he’ll be fine, or “grow out of it,” but as the years went by, nothing changed. My wife Deena stayed on top of it though, making sure he always got what he needed. They called me a warrior when I was fighting, but she was the real warrior, doing what needed to be done for her kid. When I realized that, I accepted my son for who he is, and began my mission to help out other kids in similar situations.”

 

Q: There’s an unfortunate stigma against dads of children with autism, that they “can’t be as involved as the mom.” What would you say to any dads out there to convince them to be proactive in their child’s life?

A: “It comes down to the last question I answered. I was in denial as a dad, I didn’t want to believe it even existed, let alone that my son had it. I’m sure there are a lot of dads out there who go through the same thing I did. But that’s crazy, because if you think that way, then you’re not really a dad. When you’re a parent, you take your child, and you deal with the hand you’re given, and you do what you have to do to ensure they’re the best they can be no matter what’s involved. Moms are going to do what needs to be done almost always, because they carried you! They know what’s best for you by instinct, but many dads don’t have that. What I can say though, is to just remember: it’s not about you, it’s about your kid. Just love them and take care of them, and I promise you’ll do just fine.”

 

Q: Thank you so much for doing this. Last thing, can you give any general advice to all the dads out there who may be reading?

A: “It’s no problem, glad to do it. My suggestion to the dads out there: get down on one knee, look them in the eye. MAKE that contact with them, if they look away, pull their face back to yours. Let them see you, because once they do, it breaks that barrier they put up automatically. “There’s nothing you can do to change your situation, other than change your situation.” Doing nothing will change nothing. I’ve seen it consistently ever since I opened this place up. When you work hard to make things better, the change you will see is contagious, and it’s one of the best feelings in the world. That’s the reason I’m here today standing in this building with you, is my determination to make things better, and that is my advice to all the dads out there.”

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Olando and his wife, Deena.

 

  • G. Sosso

 

 

Autism & Parenting: A Personal Tale

For many families with autism, the name Temple Grandin is well known. While Dr. Grandin is truly inspiring and a beacon of hope, for me the hero in that family goes by the same nickname as me and many of you, Mom… Eustacia Cutler.  I can’t imagine facing the challenges and decisions she made at a time when she did not have support of her community and services such as CARD like we have now.

I just want to note that if you are reading this, and you are a Mom (or a Dad taking on the role of Mom), you are doing an incredible job! One thing that Eustacia did not have to contend with is the undue pressure of social media to contend with setting an unrealistic standard of motherhood. It is human nature to only want to share the positive aspects of your life, but in doing so a much altered reality is portrayed. It is in the sharing our own struggles and asking for help that we can help each other and then truly celebrate the successes, however small.

Let me share with you a recent episode of my life that, at the time, I thought was definitely a mom failure on my part. I’ve gotten quite spoiled as of late with minimal meltdowns for the past couple of years by my ten year old. I can’t quite say that about myself, but of her I can.  Of course she would correct me and say, “Uh Mom, you mean disasters”. So this particular disaster was triggered by me forgetting a cardinal parenting rule.  Don’t commit to something you don’t deliver. The day before my daughter had asked me if we could stop somewhere on the way to school and get a breakfast sandwich (and a donut) instead of her eating at home or school as is the norm. I said, yes, and added quickly as long as you are ready early. However, I did not expound on that or provide a definition of what ready and early was.  She got up very early that day, but about five minutes before I intended to leave I checked on her and she was still in her PJs!!! It seems getting up early only provided her a chance to get distracted and lose track of time. With my reminder she jumped into action but at this point I knew we wouldn’t be able to stop and I made her breakfast.

We got in the car and I gave her the breakfast to eat on the way. She ate it without complaint and was singing along with the radio. Then we got to her school. She asked why we were there. I said, so you could go to school. She asked about stopping. I explained she wasn’t ready so we weren’t able to stop today. This is normally where in my spoiled state she would take it in stride and the day would keep going. But this time….it stopped. We pulled up to the car rider line where the safety patrol was and she wasn’t budging. So I pulled up further where the ESE teachers and Aides were and she was in tears and repeating, “I am not ready; I was supposed to go to the store”. They tried; I was out of the parked car at this point trying all my tricks. It wasn’t working. I was trying very hard to stay calm as I had to present to about a hundred people an hour later. I thanked the two teachers that stayed out there with me for the twenty minutes and told them I would drive around to the front office. There was a part of me that thought if you had just taken her and been late you could have avoided this. But I was not giving in. I drove to the front of the school, tried one more distraction reset, “Should we park on the right or the left?” in an animated voice.  “Insistence” was in the backseat still wanting her original plan.

We parked. I think she realized at that point I wasn’t giving in and so she got out of the car, rushed through the office and headed up to her classroom. I followed behind with her backpack, getting a classroom pass, etc.  I caught up with her at the top of the stairs. She told her teacher, “I am having a rough morning”, and I passed the torch. It was reported back to me that she ended up recovering well and having a great day. The next morning, she was ready to go 15 minutes before we were scheduled to leave without prompting from me. Maybe it wasn’t a failure after all?

I have long since given up the “I can do it on my own” pretense. I often call up my fellow parents, CARD consultants, family and friends when facing a new twist and turn.

  • Michele Jewell, CARD Constituency Board Chair

Farewell to CARD

As I “retire” from CARD-USF to move on to a hundred other activities, I have been reflecting a lot lately on: how much I will miss everyone at CARD; how much I will miss USF, which has been part of my life since 1967; how much I will miss being a librarian, even if I’ve been kind of a “pretend” one for the last couple of decades; and how much I will miss keeping up on the latest research, publications, and news, though the osmosis effect of social media ensures that I won’t miss much.

Mostly, I am thinking about how much things have changed for families since my daughter was diagnosed in 1992:

  • Her original diagnosis of PDD-NOS no longer exists as a diagnosis
  • Asperger’s disorder no longer exists as a diagnosis
  • Children diagnosed with autism spectrum disorders (ASDs) in the early 90s were very likely to be placed in programs designed for children with emotional/behavioral disorders, or intellectual disabilities, but rarely in programs designed for children with ASD diagnoses. Very often, children with ASD were placed in center-based schools. We have watched education evolve from a dearth of teacher preparation and services, through developing expertise thanks to professional development efforts of school districts and organizations like CARD, through segregated settings at neighborhood schools, to a current landscape in which many more students are fully or partially included with their peers in regular education classes and activities.
  • Interventions have gone from consequence-based, punitive “treatments” to antecedent-based, positive supports that seek to make the whole environment supportive and oriented toward increased communication and prevention of challenging behaviors.
  • Community venues such as child care sites, summer camps, restaurants, movie theaters, theme parks, resorts, zoos, orchestras and museums have gone from being fairly unwelcoming environments, to seeking out training and support from CARD to open their doors and programming to customers, visitors and employees who have ASD.

One of the most beautiful advocacy movements that has emerged over the past twenty years has been the self-advocacy movement working for acceptance of all individuals with or without diagnoses. This movement has recently been represented most visibly by the author Steve Silberman, in his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, published by Penguin Random House in 2015. Many public libraries have this book, or can get it via inter library loan if you are interested in reading it. This movement seeks to move from “awareness” to acceptance. Once individuals who have traditionally been marginalized by society develop their own voice and presence, it becomes impossible for them to continue being ignored, and changes happen quickly.

As the parent of an adult with ASD who is very challenged by social & communication issues, I will take with me into retirement a renewed sense of my daughter as an individual with unlimited potential who deserves to be accepted fully by her community, even if she needs a bit more assistance in developing her own voice. But it should be her voice – not the voice of well-meaning people thinking they are speaking for her.

Thank you CARD staff, families and friends, thank you everyone in CBCS and USF for the gifts of your friendship, wisdom, and insight. I leave here the better for having known and worked with all of you.

– Jean

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The Importance of Person-First Language

You may have heard the term “person-first language” before (that’s person-first, not to be confused with first-person, a point of view); simply put, it’s a manner of speech which aims to avoid any kind of dehumanization or marginalization amongst those with disabilities. Now, there is some controversy surrounding the usage and importance of person-first language, but we here at CARD believe its use to is of the utmost importance. I’ll go more into it in this, but if you would like to read more about what person-first language is, here’s a link to a page explaining it in great detail: https://www.thearc.org/who-we-are/media-center/people-first-language.

 
First of all, what is person-first language in the context of speech and writing? Let me give you an example: instead of saying “that autistic boy,” we prefer “that boy with autism.” Autistic is an adjective; i.e. a word that describes or defines something/someone. In our opinion, a person should not be defined by their disability, be it autism or some other condition. Autism may be a part of who they are, but it is not the main aspect of their identity. When describing others, most people will say, “that girl with the long hair,” not “that long-haired girl.” The long hair is just a part of who she is, not what defines her. While not an offensive or even particularly distasteful example, the same concept applies here. If we utilize person-first language for such mundane things as hair color, then why not do the same for autism?

 
There is one other thing I would like to add, and it’s the main reason why I personally advocate the usage of person-first language, especially in regards to autism. There is a particularly nasty trend going that’s been going around, mostly on the internet, which uses “autistic” as an insult for behavior and/or actions deemed undesirable. To use a personal example, I have played many games online where I witnessed someone make a simple in-game mistake, to which many will viciously attack that person, calling them autistic just because they didn’t fit their definition of perfect. It’s even happened to me, and it’s very upsetting. For a long time, “retarded” has unfortunately been a rather prevalent insult, but now the vocabulary is expanding to include autism specifically, and it saddens me. The thought that calling someone “autistic” carries such a negative connotation is a disheartening thought, but it’s just another reason why I believe person-first language is the way to go. Being on the spectrum is nothing to be ashamed of, and you should be proud of who you are!

  • G. Sosso

 

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Still Learning from My Adult Child with ASD

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Long ago, I stopped accepting most of the things that are supposed to be true about people with autism spectrum disorder (ASD). Recently, I was reminded about two of these supposed “truths”:
     1. People with ASD make meaningless sounds such as humming, and sing or recite content from movies just to hear themselves make noise.

     2. People with ASD have sensory processing issues that must always be controlled externally by altering the environment or providing them with additional tools such as weighted blankets, noise-cancelling earphones, or other sensory-calming products.

Whether verbal, non-verbal, or somewhere in between, our children have a lot to teach us about how they perceive and process the world around them. Perceptive parents quickly learn a lot from their offspring – about ASD, about children with other differences, and most importantly, about their own children as individual human beings.

This is a little story about tuning in to my 26-year-old daughter, whose habits, movements, sounds, and sensitivities I know almost as well as I know my own, though I don’t always understand the communicative intent of her behaviors.
Three mornings a week, a van arrives to transport Anna to her day program.
Every morning for several years, she would pace, recite movie lines and hum in an agitated manner with her fingers stuck in her ears in anticipation of the van’s arrival. As it pulled up in front of the house and the horn honked, she would gasp loudly and push harder on her ears, then walk out to the van holding both her lunchbox and her ears.

For the past month or so, there has been the same van, same driver, and two quick honks on the horn, all of which have made much of the morning more predictable and easy. However, the time of arrival still varies each day, and that still meant there was enough unpredictability that waiting was anxiety-producing.

Over the last few weeks, Anna would pace, cover her ears, hum and chatter only for a few minutes, then as the time drew nearer for the van to arrive, remove her fingers from her ears, and peer intently out the window. Inevitably, within 60 seconds of the time the van actually arrived (how does she KNOW that?!), she would softly insert her own closely approximated version of the tone, pitch, and time interval of the two quick horn blasts into the rest of her chatter. “Yada yada yada yada beep beep yada yada yada yada.”

It took a few days for this to get my attention, but once it did, I also noticed she no longer gasped and clamped her hands over her ears when the van arrived, and it dawned on me what she was doing. She was preparing her sensory system for the unpredictability of the arrival time, using her own version of the sound of the horn, something like an auditory immunization. It’s brilliant! All of the muttering and chatter seems to be meaningfully connected to the two little honks she makes.

So – two things are still true, after all these years:
• never assume odd noises and sounds are meaningless, and
• it’s easy to miss noticing when our children teach themselves calming and self-management techniques on their own and apply them to specific circumstances.

This story does not negate instances where self-produced sounds may be stimulating or reinforcing for unknown-to-us reasons, nor does it argue against the anecdotally reported benefits of sensory-integration tools and techniques. I appreciate fellow parent Beverly K. for pointing out that we especially need to remember many of our younger children have not yet developed self-management and self-regulation skills to help them deal with bothersome sensory input. For parents of younger children – when people tell you, “It gets better” – this is the kind of wonderful thing they mean.

Watch and listen closely! We never know what our children, no matter what age or ability, might have to teach us!

  • Jean

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