Florida's First Choice for Autism Support

Posts tagged ‘center for autism and related disabilities’

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

Technology & Autism

It’s no secret that technology has completely changed the face of society, especially in the boom of the past 20 years or so. We have things like smart phones, tablets, notebooks, smart watches, etc. which have made things so much easier for all of us. But how does this affect those on the autism spectrum? In what ways can we utilize this new amazing technology to improve life for people with autism and their families? It can act as either a learning tool or a great source of entertainment depending on the context.

Perhaps the most prevalent use of technology in regards to people on the spectrum is that of “assistive technology.” The Technology-Related Assistance for Individuals with Disabilities Act of 1988 describes assistive technology as “any item, piece of equipment, or product system, whether acquired commercially, off-the-shelf, modified or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities,” in this case autism. One good example I can think of is an app that one of my mom’s good friends uses with her son called “First-Then Visual Schedule.” Oftentimes visual learning is the primary method for those with autism, and this $10 app helps present a visually stimulating schedule that will help people keep better track of their lives. This is just one example, there are many more out there that do a myriad of different things; here’s a convenient list on parenting.com that features 11 apps including the aforementioned First-Then Visual Schedule.

Technology is not confined to the assistive variety, in fact many use it as a way to stave off boredom. It’s no secret that children with autism particularly love video games, as they talk about here, and with the rise of casual gaming brought about by tablets, there’s a never-ending supply of fun to be had. While tech addiction is a real thing and should be avoided, sometimes as a parent you just need some time to yourself. One of the best ways to keep your children occupied is to get your kid a video game system, or even just an iPad with Candy Crush, Crossy Road or Angry Birds, and they can keep themselves busy for hours at a time. Trust me, I speak from 21+ years of experience.

One interesting thing I would like to highlight is this little gem: Project EVO. It’s a therapeutic tablet game made specifically for kids with autism. Here’s what CBS said about Project EVO: “As they [the kids] go through the game they are supposed to skirt around certain objects while choosing others. The idea is to condition the brain to sift through and organize information in real time, requiring a player to stay focused on the task at hand.” It’s a very interesting concept. The game has not yet been released, but I look forward to tracking its progress.

 

  • G. Sosso

Autism & Navigating the Internet Safely

Ah, the internet. It is a vast place, with an almost infinite number of possibilities. Chances are, if it exists, it’s somewhere on the internet, and you can find it if you look hard enough. In fact, nowadays it’s difficult to get by without embracing the online world. However, this also comes with some great risks, and the internet can be a dangerous place if you don’t navigate it responsibly. I’m no expert, but as someone who has been using the internet my entire life, I’d like to think I’ve got a pretty good grip on the dos and dont’s of the web. I will do my best to share some of the most important ones with you, in hopes that you have a safe and enjoyable experience.

The first and most important thing is to never give out personal information, especially on a public forum site such as Facebook or Twitter. Examples include, but are not limited to: your Social Security number, home address, phone number, or bank and credit card account numbers. Many of these may seem fairly obvious, but people make the mistake every day. Additionally, never reveal any personal information which can be used to track you down in real life, so things like your school, sports team, clubs, and your place of employment should be off limits.

Remember, everything you post on the internet is there permanently. So make sure anything you post is something you’re okay with other people hearing. Basically, if you wouldn’t say it to your mother’s face, don’t say it online. You may think venting about how terrible your job and boss are, but keep in mind: that can come back to bite you. If the company you work for sees what you posted, they can and will fire you. This article is a perfect example. Just like in real life, you can never take back something you say online, so choose your words carefully!

Cyber bullying is a major issue in today’s day and age, like it or not. Cyber bullying is any form of harassment that takes place online instead of in person, and while that eliminates the possibility for any physical harm, it can make the emotional damage even worse considering the anonymity provided by the internet. According to this article, “Pupils with special educational needs are 16% more likely to be persistently cyber bullied over a prolonged period of time.” If someone starts getting nasty with you online, don’t give them the time of day. Just like regular bullies, they’re most likely just taking out their own personal problems and insecurities on those who are less likely to be able to defend themselves. It’s not worth your time to give them they attention they crave, and you’ll only be making yourself miserable in doing so.

Finally, and this one is crucial. Unless it is purely for business purposes, never agree to meet with someone you meet online in person. It’s a well-documented fact many people on the autism spectrum are naturally more trusting than the general population. While this is not always a bad thing, placing too much trust in a stranger can be dangerous, and it’s difficult for those with autism to discern that. Statistically speaking, there is a higher probability that the friend you’ve met online is a good person who means you no harm, but there’s also a lot of creeps out there who are looking to take advantage of young naïve individuals, and I don’t think I need to go into the things they’ll do. There have been so many cases of this, linking to one or two examples would be pointless; a quick google search will show you the true depravity of some people. Always keep interactions with strangers purely anonymous while online.

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

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

Autism Moms: Things to Remember

With Mother’s Day 2016 just around the corner, I’ve been thinking a lot about my own mother and how much I appreciate her and everything she does for me. I wouldn’t be where I am today if weren’t for her, so thank you so much; I love you! Today I want to talk about some things that “autism moms” may experience or should know about. I’ve compiled this list from various sources, including the internet, my own mom, and the moms of some of my friends from the Learning Academy last year. I included a few entries that apply for high functioning autism, and some for low functioning, so as to not discriminate against either demographic. Some of these things may seem obvious, but honestly speaking, being a parent to kid(s) on the spectrum is a challenging thing, and sometimes being reminded of these things can be a huge help in keeping us grounded. So here’s my list of the most important things you will experience as an autism mom:

  1. You will become very flexible. Kids with autism can often be unpredictable and don’t always have the same thought process as neurotypical children, so you will have to learn to adapt to their behavior. Don’t expect a “one size fits all” parenting style to work very well.
  2. At the end of the day, you will have the patience of a saint. For a while, your child will test your sanity, but you will come out stronger for it in the end. My mom used to be quicker to anger, now she can take anything that comes at her.
  3. No matter where your child falls on the spectrum, you will come to be thankful for progress of any kind, be it vocal, academic or social, so much more than the average parent. You may even feel happier than they do!
  4. Like it or not, you will learn basically all there is to know about autism itself. The moms I talked to formulating this list seemed to know more about autism than some neuroscientists, which I found humorous.
  5. This one is very important: please make sure you take care of yourself occasionally. You won’t be able to take care of your kids if you’re too fatigued to do anything. Treat yourself to a night out every now and then.
  6. You may or may not go crazy at times thinking about your child’s future. Just kidding… you will absolutely go crazy! All parents worry about this, but when you have the unpredictability autism brings like I mentioned before, it can really dominate your mind at times.
  7. Above all else, you will truly learn to appreciate what you have. Kids with autism are just as wonderful as those without it, and if you just have the determination, you can make them become a success through a loving relationship.

Make sure to show your appreciation this Mother’s Day, and to all the wonderful moms out there, thank you for all you do!

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My mother and I

  • 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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