Florida's First Choice for Autism Support

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Father’s Day

Father’s Day is coming up and I wanted to devote this blog to all the wonderful fathers out there! Earlier this month, I got to visit with local autism dad Olando Rivera, former champion kick boxer and owner of the B.A. Warrior gym here in Tampa. If you’d like to read about my visit and get some great input from a primary source, please feel free to check out here.

It’s no real secret that compared to mothers, fathers don’t receive nearly the same amount of appreciation for what they do. To be fair, there are (mostly cultural) reasons for this. With many families in America, the dad is out working most of the day while the mom stays home and raises the kids. There is no study to support the claim that women naturally have more compassion than men do, though according to this article, women express compassion more often through “nurturing and bonding behaviors,” which is advantageous when taking care of a child with autism. Like most things, however, these are just generalizations, and not always the case. There’s a national trend lately that’s seeing more and more dads act as the primary caregivers in the household. Pew Research reported in June 2014 that at least 2 million men are stay at home dads in the US alone  and that number has surely risen since then. So the men are there, and they’re not going anywhere! And this is in no way meant to marginalize the impact or importance of moms; quite the opposite in fact. The mom is the wheel that keeps the whole family spinning, and without them we’d all be lost. This is more about giving thanks to the dads out there, who are just as important and should be respected as such!

To all the moms out there: please, encourage your husband to take a more proactive role in your child’s life. If you read what Olando had to say, follow that advice. His bond with his son is so strong because he got involved, broke down that barrier that so many kids on the spectrum erect, and both father and son are stronger for it. Ultimately though, it’s up to the dads to take that big step. Olando had a great quote: “There’s nothing you can do to change your situation, other than change your situation.” This is very true. A very similar thing happened to my own dad a few years ago. Before I got my diagnosis, my relationship with him was rocky. Not terrible, but we never really connected all that well. After the diagnosis, and after seeing a family therapist, he completely turned things around; he “changed his situation.” Now he and I have a wonderful relationship and I love him dearly. Its stories like Olando’s and hopefully even my own that we’re trying to create more of here at CARD, by raising awareness leading up to Father’s Day.

This Father’s Day, remember to give your dad a big hug, maybe get him a little gift, and most importantly, let him know how much you love and appreciate him!

  • 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!

olando

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.”

olando 2

Olando and his wife, Deena.

 

  • G. Sosso

 

 

Autism Awareness Month is Not Enough

As many of you might already know, April is Autism Awareness Month! All around the world, groups like CARD are doing their best to bring attention to the unique struggles people on the spectrum face on a daily basis. There’s even a special campaign every April 2nd called “Light it up Blue,” which, as the name implies, is a day to wear blue, the color that represents autism. As someone who realizes how generally underrepresented and unappreciated the ASD demographic is 11 months out of the year, I can at least be thankful there’s a month devoted to the cause of helping these people.

I’d like to include some pictures of some of the world’s famous landmarks that participate in Light it up Blue, it’s really a beautiful thing to see:

There are many others, from famous Buddhist Temples in Asia, to the Eye of London and the White House; I suggest you look them up as well!

Anyways, the thing I would like to talk about is the idea of an Autism Awareness Month itself. Now, while I said before that I do love the idea, I (as well as many others), feel that it’s not enough. According to the Autism Society, there are more than 3.5 million Americans alone with ASD, or roughly 1 in 68 births, and that number seems to be climbing constantly. Too many on the spectrum are directionless, unable to find help, don’t have the necessary life skills to thrive in the world, and these things aren’t their fault. They just need the proper guidance, and an awareness month dedicated to them is a great first step, but we need more.

Autism awareness is something that should take place all year long, not just in April. The fact of the matter is, while many people who normally don’t think too much about autism are more cognizant of it for 30 days, once May 1st rolls around, they’re back to forgetting for another 11 months. This is how many feel about other dedicated months, such as Black History month or Women’s History month. Until the day where individuals on the spectrum are fully integrated into society (or at least as well as we can be), let’s focus on making Autism Awareness Month “Autism Awareness Year.”

  • G. Sosso

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

jean and anna 2

Sesame Street’s Julia & Autism Initiative

Growing up one of my (as well as millions of others’) favorite educational programs was Sesame Street. They always managed to balance clean humor with teaching a good lesson, and they rarely talked down to their audience. Recently, I’ve learned two amazing things about the show, one of which is the topic of this blog. First, the previously anonymous man behind the blog “Autism Daddy” was revealed to work for Sesame Street! He’s even done voice work for the puppets and is the main force behind the new Sesame Street autism initiative, which I’ll get too momentarily. I highly suggest you check out Autism Daddy if you haven’t already!
As I mentioned, Sesame Street has been hard at work using their enormous platform to promote autism awareness across the world. They’ve even added a new character, Julia, to the show who has autism (her behavior implies Aspergers). Something you may notice right away is that yes, this new character is a girl, which is almost unheard of in today’s entertainment. According to the Centers for Disease Control and Prevention, 1 in 68 children are diagnosed with autism, but the number is skewed between the sexes. 1 in 42 boys are on the spectrum, while that same number for girls is only 1 in 189. That’s the main reason why whenever a character with autism is portrayed in the media, they’re almost exclusively male.
So why was Julia introduced? What mission is Sesame Street hoping to accomplish with their newest program? Well, according to PBS, “‘The initiative, Sesame Street and Autism: See Amazing in all Children,’ provides educational tools in online and printed story books and as a free downloadable app that feature “Sesame Street” characters explaining to children how to interact with friends, like Julia, who have the neuro-developmental disorder.” It sounds to me like they are definitely serious about this, and from what I’ve seen of the materials they’ve released so far, it seems to be a resounding success. The other question many people are asking is, “why did they choose a girl?” While it is true that autism is more prevalent among boys, I actually really like the move. Sherrie Westin, the VP of Sesame Street, commented on this, and I couldn’t agree more. “We made sure she was a girl namely because autism is seen so much more often in boys,” she said. “We wanted to make it clear that girls can be on the spectrum, too… We’re trying to eliminate misconceptions, and a lot of people think that only boys have autism.”
I hope Sesame Street will continue to use their influence to help more people on the spectrum, but from their track record and what I’ve seen so far, I have nothing but confidence in them. Below is a picture of Julia with Abby and Elmo.

julia

  • G. Sosso

Sources:

PBS: http://www.pbs.org/newshour/rundown/sesame-street-debuts-julia-first-character-autism/

There and Back Again: The Learning Academy

It always feels special to be able to gain a new perspective on something, and my most recent project is a perfect example of that. For those who may not know, I am a 2015 Learning Academy graduate now employed by CARD as a writer/copy-editor. It was the Learning Academy (TLA) that provided me with the skills I needed to hold down a job and cope with the real world, and now I get to repay them for all that they’ve done for me. I’m initiating a project where I’ll be tracking the progress of two current TLA students, Sean and Lizzy. I will be showcasing where they were at the beginning of the year, and how far they’ve come by the end. But that’s neither here nor there; the real focus of this blog is what a truly visceral experience it was going back into the TLA classroom, not as a wide-eyed, eager student, but as an employee, team member and someone of actual authority.

I caught my first glimpse of the new TLA class a couple months ago, during their orientation (which I remember mine like it was just yesterday!). I could see the looks of uncertainty on most of their faces, as well as a hint of cautious optimism. I can’t speak for them of course, but I can safely assume they were feeling the same torrent of emotions that I was; apprehension, hope, anticipation, joy and courage in the face of this new chapter of their lives. To be honest, when I went up to deliver my speech announcing the aforementioned project, I was very nervous. I had practiced what I wanted to say in my head a million times, and I had no problems speaking publicly last year when I was a student, but this time I had to make a good impression. I didn’t just represent myself and my own progress; I was a reflection of CARD and TLA as a whole. Luckily, I did not choke under the pressure, and received a warm reception.

My second meeting with the new class was far more low-key. In order to get a good feel for how things are going, I stopped by for the last half hour of class, and let me tell you, I can scarcely think of another time when I felt so much nostalgia. It was very tempting for me to raise my hand to answer some of the questions Megan was asking just as I had done last year, but considering I was no longer a student, I knew it would not be proper. It is a testament to Megan’s teaching ability that despite the fact that an entire year had passed, I still clearly remembered the lesson being taught, its real-world applicability, and how we used it to aid us in discovering an internship that we could succeed at.

I look forward to seeing how this year’s TLA class will fare, but from what I’ve seen thus far, I have the utmost confidence in them. And at the end of the year, when they all graduate, I’ll be watching fondly, knowing from personal experience just how special of a moment it truly is.

To learn more about the The Learning Academy at USF visit their website.

  • G. Sosso

Family Support

What is the first thing that comes to mind when we think of supports for families of children with ASD? Probably service categories: respite, in-home ABA therapy, good placements and related services on the IEP, financial assistance, assistive technology – that sort of thing.
Increasingly, families are discovering that services are not available or they are limited, due to funding cuts, lengthy waiting lists, and shortages of providers.
Finding ourselves in this situation, it is tempting to feel as though we are without any support at all, left to manage as best as we can, even though we feel our children’s entire future is at stake, and the “system” is letting us down.
We can make a decision at this point to respond any of several ways:
• We can become angry and desperate, lashing out at anyone who picks up a phone at the other end, complaining, threatening, and sometimes crying. As Dr. Phil might ask, “How’s that working for you?” Exactly;
• We can advocate for change for the sake of our children and others, by contacting local, state, and federal legislative officials or state agencies that control the funding or regulation of various services, and ask how we can help them increase the availability of services, funding, or providers in our area or state;
• We can try to become one-person autism fix-it machines, learning how to implement therapies at home, homeschooling our children, or starting our own commercial or non-profit organizations to provide services, funding, or other options.
• We can ask for help from family members, friends, co-workers, fellow worshipers, and others, to give us time to run to the store, provide after-school care, or to help implement behavioral interventions.
However we decide to handle things, there is another type of support system we can add to our toolkit that we might not have considered. This is something that might not become apparent until years down the road, after our children have finished school, ended years of after-school therapy sessions, and we have found some kind of peace with the diagnosis, acceptance of the imperfections of public and private systems that are supposed to help, and have come to accept our own strengths and limitations, for whatever successes or failures we have managed to have, as parents.
Coming from the other end of this parenting experience, I can hand back a few pointers to my younger self for where to find this hidden system of support:

Dear younger me: Look in the quiet places of your life that have nothing to do with ASD, ABA, IEP, SSI or XYZ.
But what does that mean?

It means the peace, strength and acceptance you will find years down the road doesn’t necessarily come from yelling at people on the phone, or convincing people in power to do things your way, or “winning” the biggest battle of all – “fixing” the autism. Any or all of those may or may not work out.

What do you mean by “quiet places”? Where do I look?

What happens while you are dealing with the big “A” in the room, is that your life as a human being continues to go on all around and inside you. You may find love, happiness, acceptance, and inclusion in places that aren’t even on the checklist of “supports” you are going after on behalf of your child.

1. What about the teacher who says she is happy to see your child come to school in the morning because his fantastic smile always makes her day?

2. What about that person in the prep area at the back of the taco place who sees your very unique order come up on the screen and yells, “Oh that’s gonna be my girl. How’s she doing today?”

3. What about the spiritual leader, or counselor, or other mentor, who helps you gain insight into the purpose of your life, and helps you believe in yourself?

4. What about that friend or family member who takes a special interest in your child and always asks for updates and news on the latest successes? Even after all these years, dear younger self, I still run to the computer every day to send mom photos of my child’s latest painting or tell her a story about a little breakthrough.

5. What about that moment when you revisit an interest you had pre-autism, and get back into a spiritual practice, or dance, or theater, or sport, or fiber art, or painting, or finishing a degree you left half done in order to become a super autism parent? Let’s take a sensory tour of all those places. Walk into a place of worship, or meditation center. Feel the years of devotion, prayer, silence and peace that fill the space. Walk into a dance studio. Look at the beautiful floor and the mirrors. Walk into a theater. Smell the paint and sawdust, run your hands over a few seats. Walk into a gym or locker room. Smell the sweat. Remember what it feels like to be physically exhausted and emotionally flying. Walk into a fabric or knitting store. Touch some fabric or yarn. Walk into an art store. Smell, look, explore. Go online and look at next semester’s classes. Register for the one that excites you the most. If they still use physical textbooks, walk into the bookstore and take a sniff. If not, go to the office supply store and pick up a notebook and pen. Smell that place, and see if you don’t get an extra little thrill. Whatever it was that got you excited, put yourself physically in touch with it and briefly fill your senses with that particular environment.

Then go home and try, younger me, to sit quietly for a moment or two, and forget about all the advocacy and urgency and things that aren’t going right all around you.I know there are many. Just let images float through your mind of people, moments, places and activities that make you feel happy, alive, and peaceful. Don’t put words to it. Just let it all be there for a bit.

And by the way, younger me – try, before too many more years go by, to stop saying No to all those things in number 5 because you are too busy. Say yes to something small. See if your child might join you in doing something together. Crack open that part of your life where your deepest joys await you.
For all you know, doing things that excite and fulfil you might be an inspiration to your child to develop his or her own interest or hobby.

A parent-child relationship is built on the foundation of so much more than the services and supports we usually look to when a child is diagnosed. Sometimes the most profound inner strengths are grown and nurtured in the quiet corners of our lives that go unnoticed and under-appreciated.

Go there. Find what can be loved and nurtured. Let it grow and support you in ways you can’t imagine.

  • J. MacNeill

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