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Posts tagged ‘support’

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
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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

 

 

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

Transition Planning: It’s Never Too Early To Start

transition

This is the third in a series of articles about transition planning. This article focuses on students in middle school. It is never too early to plan for transition to adult life. Preparing a young person for transition to adulthood is a gradual process stretching over several years. You may find the “transition roadmap” for middle school helpful in starting the journey: http://flfcic.fmhi.usf.edu/docs/FCIC_Employment_Roadmap.pdf

Involve your child in activities that foster self-respect and self-esteem, and enable gradually increasing independence. This may include participating in extracurricular activities that build on your child’s strengths and interests, such as playing an instrument in the band, auditioning for a play, or getting involved in 4-H. Assign specific tasks at home, and require that the tasks are done thoroughly and on time. Have your child join you in community activities that help others, such as cutting coupons for an elderly neighbor, cheering on friends competing in a marathon, or reading to a young child.

Take your child into the community, and point out occupations and the tasks and responsibilities of the persons doing those jobs. Encourage your child to talk about the occupation he/she might like to do as an adult. Highlight your child’s strengths and gifts. Expose your child to experts with similar strengths and gifts, such as attending a symphony concert for a budding musician.

In middle school, your child should become more involved in developing the goals on his/her IEP, and in self-assessing progress over time. Creating personal ownership of the IEP is a foundational base in developing your child’s self-determination skills. By the time your child is a 9th grader, he/she should be attending his/her IEP meeting, and possibly even chairing the meeting by grade 11 or 12. Did you know that a diploma option must be chosen in 9th grade (as per the new state statute)? Your child should be an active participant in making this important decision. More about that in the next article about transition…..

5th Annual Autism Health & Wellness Symposium

2014 CARD's Autism Health and Wellness Symposium Save the Date

It’s time again for CARD’s Annual Health & Wellness Symposium! Join us as we host our free one day conference aimed at uniting the community around health & wellness for individuals and families impacted by Autism Spectrum Disorder. Four presenters have been secured to share their expertise around health related topic areas; Caregiver Wellness, Food Aversion & Eating Challenges, Dental Care for Individuals with ASD, and Medical Visits for Individuals with ASD. Exhibitors will be present throughout the day and will share community resource information. We will also be providing Challenging Behavior Screenings as well as ASD Screenings. Appointments are not required for the Challenging Behavior Screenings.

Autism Spectrum Disorder Screenings will be scheduled for families with concerns regarding their child’s development on a case by case basis prior to the date of the event (Please contact Beverly King for more information to schedule your child for an ASD screening at beverlyking@usf.edu)

Register for the event today! https://www.eventbrite.com/e/cards-5th-annual-autism-health-wellness-symposium-tickets-12008913985

Transition Planning Series #2

transition

This is the second in a series of articles about transition planning at the secondary level for your child with Autism Spectrum Disorder.
On or before your child’s 16th birthday, transition services becomes an integral component of the Individual Educational Plan (IEP), better known as the Transition Individual Educational Plan (TIEP) at high school.
The TIEP must include a statement of the needed transition services, including (if appropriate) a statement of the school’s and each participating adult agency’s responsibilities or linkages before the student leaves school. “Transition services” means a coordinated set of activities for the student which are outcome-based to promote movement from school to post-school activities. Post-school activities may include post-secondary education, vocational training, integrated employment, continuing and adult education, and/or adult services focused on independent living and community participation.
The coordinated set of activities are based on the student’s needs, and take into account the student’s preferences and interests.The activities shall include the areas of instruction, community experiences, the development of employment, and other post-school adult living objectives; and, if appropriate, daily living skills and functional vocational evaluation.
The TIEP is a dynamic document that may be revised at the IEP annual review, as the student moves closer and closer to graduation. It is important that you and your child are actively involved in developing and implementing the transition plan. The TIEP is the pathway to your child’s future.

– Sue Thomas, CARD Consultant – Adult Services

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