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Archive for the ‘Personal Tales’ Category

My Take on Becoming an Autism Friendly Tampa Advisory Committee Member

Recently, I was asked to join the new City of Tampa’s Autism Friendly Advisory Committee, a council approved by Tampa Mayor Bob Buckhorn. It was an incredible honor, and almost overwhelming in a way. While it may have something to do with self-confidence issues, I felt like I didn’t deserve it. All I am doing is indulging my passion for writing with this blog, and now I’m asked to represent the ASD community in the Tampa Bay area? While it’s still difficult for me to process, I decided wholeheartedly to accept the invitation. The meeting included representatives from several prominent institutions around the area, including MOSI, Glazer Children’s Museum and WEDU, and all were fully committed to the idea of an autism friendly Tampa Bay. For my own part, I put forward several ideas on how to improve the general relationship between individuals with autism and the city, such as promoting success stories and highlighting the positive aspects of inclusion in regards to ASD. If there’s any way for me to continue to provide a voice for our community here in Tampa, I’ll be proud to do so.

Perhaps the most important thing we discussed in the meeting was CARD’s crown jewel, the Autism Friendly Business Initiative that, with collaboration from the mayor’s office, has expanded into Autism Friendly Tampa (AFT). I’ve discussed it previously in past blogs, and you can read all about it on our website, but essentially AFT is a project aimed at training various businesses around the city, as well as the city employees & first responders. The training is provided by CARD-USF at no cost and seeks to improve an understanding of autism and best practices to engage and accommodate those on the spectrum and their families. Considering the significant number of us (there are estimated to be more than 25,000 people with autism in Tampa Bay), you can see how important this is to us. I fully support AFT’s efforts, and speaking from experience I can see the incredible potential. While I’ve never felt discriminated against in any way, I will say going out to certain places can be an anxiety-laden nightmare, where I feel like I’m being judged for my awkward posture, stuttering speech, inability to make eye contact, etc. Removing that layer of fear I know would be valuable not only to myself but others as well.

For its part, Tampa has been receptive to AFT, and we believe in it going forward. The positive feedback we’ve already received has been fantastic. One respondent went into detail about the importance of this project. They wrote, “cooperation with traffic and safety departments for a process to request caution road signs for motorist awareness could potentially save lives,” “The things some people may take for granted, such as dentists’ offices, recreational programs and therapy providers are critically important to our families,” and “With the right people and resources in place, I’m confident the Tampa initiative will have a profoundly positive impact on autistic individuals and their families.” This is a sentiment we hope to hear echoed over the coming years from families across the region affected by ASD.

G. Sosso

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** To view the official City of Tampa’s press release and the list of committee members click here.

 

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My Diagnosis and How It Changed My Life

For this latest entry in my little section of CARD’s blogosphere, I want to take a step back from the more research-based topics that I usually tackle and weave a more personal tale. I do this for two (somewhat similar) reasons; namely, I haven’t done so in quite a while and desire an outlet for my (nonexistent) narcissism, and two, the thought of connecting to someone through my writing has always been a dream of mine, and I feel that if just one person who reads this can relate to my story, and somehow see a reflection of themselves, then I have succeeded. In previous writings I’ve done for CARD, I’ve referenced my late diagnosis, but never fully went into detail about the ramifications it had not only on my life, but the life of my family as well. So, without further ado, let me share with you my journey to the discovery of my autism spectrum disorder.

As I alluded to earlier, I did not have the luxury of something like CARD when I was younger. My diagnosis was a late one, which definitely had an ill effect on my childhood and early adolescence. Without a name and “face” to whatever was causing my  misbehavior growing up, the assumption became that I was just shy, introverted and lazy. And while I cannot deny that there may be some merit to those assumptions, they don’t paint the whole picture. My parents thought I was exhibiting these behaviors out of apathy for life, and that I could easily fix it if I just tried hard enough. While this is no excuse for poor behavior, I can assure you there was no way I could cure the issues which ailed me without significant outside help.

My parents, bless their hearts, had no idea what to do with me between the ages of 9 and 15. I often didn’t do my homework, never socialized, outright refused to work or do chores, was disrespectful (though that was never my intent, I later realized why it came off that way), and quit every extracurricular activity I ever participated in. Their go-to punishment were groundings, and they were constant. Not only did they have no effect, they worsened our relationship considerably. Oftentimes, confrontations turned into screaming matches with me ending up in my room in tears. I never wanted to approach my parents, and they felt they were losing their son, so it was clear something needed to be done.

Cue 9th grade, the worst year of my schooling career. At this point, things were at an all-time low, and my mom suggested therapy one day out of the blue. I didn’t have the best opinion of therapy at the time, as my sessions when I was younger amounted to little other than the aforementioned “he’s just shy,” but I figured it was worth a shot if I didn’t want to end up as a runaway. My therapist, Marilyn, really in many ways saved my life. She immediately recognized the dysfunction within my family, and she knew something with me was off. As a therapist, she could not officially make a diagnosis, but she is the one who got me and my family to consider the possibility of ASD, as I fit much of the criteria.

After recommending a licensed psychologist, I went in for several rounds of testing, and the results were… telling. Not only was I diagnosed with ASD (Asperger’s at the time), but several other mental issues I’d rather not disclose. While certainly eye opening, it was almost a relief in a way, both for me and my family. On my end, it was a relief to know that I wasn’t some loser who just acted out of spite, and that there was a reason I was different from all my classmates. For my parents, it was much the same, but now they had something to go on as far as getting help. And help they did! I continued to see Marilyn, we started doing family therapy, I got the medication that I needed at the time, and most importantly, I repaired my once-broken relationship with my parents. Knowing that I had ASD also allowed me to do my own research and help to develop better coping mechanisms that work for me, and as a result I’ve become a more well-rounded, productive person.

To cap all this off, I just want to speak directly to anyone on the spectrum reading this who may be struggling, be it with family or their own self-worth: things will get better. Accept who you are, love yourself, dedicate yourself to self-improvement, and never be ashamed of who you are. If your ASD diagnosis is a recent event and you’re trying to cope with everything, don’t think of it as a crutch or anything to be ashamed of. It only makes you special and unique. Thank you all for reading, I hope you enjoyed this tale.

> G. Sosso

Personal Tales: Gage’s Autism Speech

I’ve been taking a Public Speaking class lately at Hillsborough Community College. Recently, I had to do an informative speech, and I chose to speak about autism. My speech, like every other, was broken up into 3 parts: what autism is and is not, autism prevalence and its rise in recent years, and what various organizations are doing to help individuals and families on the spectrum. I would like to share a rough transcript of my speech for you all today.

“Hello, my name is Gage Sosso and I will be talking to you today about autism spectrum disorder, or autism. I myself have been dealing with this condition my entire life, only being diagnosed at the age of 15. Since August of 2015, I have been working at the Center for Autism and Related Disabilities at USF, doing blog writing for them which requires me to do further research on autism. First, I would like to discuss what exactly ASD is, and what it is not.

Autism is, at its base, a neurological developmental disorder which affects social, non-verbal communicative and sometimes linguistic/verbal skills. Autism manifests differently for everyone, as it is a spectrum. There are two common terms in autism diagnosis: high-functioning and low-functioning. High-functioning people struggle in social situations, suffer from anxiety, and have trouble with non-verbal clues, amongst others. Low-functioning has all that, plus an inability, or at least extreme difficulty, to communicate at all.

Autism has an interesting reputation. Let me explain to you what it is not. As confirmed by mentalhelp.net, it is not mental retardation, as some would believe it to be. In fact, there is no correlation between autism and lack of intelligence. Many people on the spectrum actually have above average IQs. The other common portrayal, especially popular in Hollywood films like Rain Man, is the ‘autistic savant.’ While savant syndrome does stem from neurodevelopmental disorders, only 10% of savants are on the autism spectrum, as confirmed by the Wisconsin Medical Society in a study.

Our understanding of, and how we diagnose autism has changed drastically over the years. According to the Autism Science Foundation, as recently as the late 1980s, the diagnosis for autism was 1 in 10,000. Since then, it’s rose to 1 in 2,500, then 1 in 1,000, and so on. This rise has been astonishing to many psychologists and sociologists. It should also be noted that the rate of autism is higher in males than females.

A number that stuck for a while was 1 in 68, but the current number is 1 in 45. So why the meteoric rise? Is it an epidemic? Possibly, but there are other theories. One that I personally subscribe to comes from scientificamerican.com, which posts that autism rates have not increased; rather, the diagnosis has changed along with greater understanding in the field of neurosciences. What was once thought of as mental retardation, schizophrenia, or just outright insanity, is now understood to be ASD.

There is much being done in the area of autism awareness. Some organizations, such as the well-known Autism Speaks, focus primarily on research and figuring out what autism is on a fundamental level, where it comes from, why it happens, and potential ‘cures.’ They (and other, similar groups), have even delved into research on the vaccines cause autism theory, which is an entirely different can of worms that I won’t get into here. Essentially, they want to understand autism on a scientific level.

Then there are groups like CARD who take a more active approach in the lives of individuals and families with autism. They focus on community outreach, highlighting positive contributions people on the spectrum have made, as well as striving for inclusion and accessibility for those with disabilities. CARD, for example, has Autism Friendly Business, where a company can contact them and receive free training on how to better assist with customers or clients with autism. Essentially, these groups seek to improve the day-to-day lives of people with autism.

Autism is often symbolized by a puzzle piece. This came about in the 1960s for a very simple reason: the condition was considered puzzling by psychologists at the time. Maybe, just maybe, if we strive for inclusion and understanding, one day we’ll discover the missing piece to this mysterious puzzle.”

> G. Sosso

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

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