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Posts tagged ‘assistance’

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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A Note to High School Teachers about Autism

It’s no big secret that high school can be a challenge for anyone, not just those on the spectrum, but for many of them, the struggle is greater than any other. They’re still growing up, many have yet to learn any true applicable life skills, and classes can be a challenge if the teacher is incapable of keeping the pace of their lessons at an acceptable level for all of their students. Many go through that phase where everything their parents say is wrong and they’re always right (don’t worry we all do it). These are just some of the many issues which can make high school so difficult. I know for me personally, high school had its ups sure, but on the whole I barely made it through at times, often only passing due to the intervention of my mom or dad chatting with my teachers and getting me back on the right track. Here, I want to discuss some issues facing students with autism in high school, and perhaps some solutions that can help resolve the main issues.

Nowadays, students with ASD participating in general education classrooms is trending. Many are beginning to feel that just because a kid has autism, doesn’t mean they can’t or shouldn’t receive the same knowledge as everyone else. For those who may not be “in-the-know” about what autism is, some of the most common characteristics are difficulty in social situations, an inability to spot sarcasm or tone of voice, repetitious actions, and a general aversion to change. According to Veronica Fleury of UNC’s Center on Secondary Education for Students with Autism Spectrum Disorders, “Many educators find that they’re not prepared to adapt their instruction methods to meet both state standards and the diverse needs of students with autism.” In a similar study, it was noted that students on the spectrum had a disproportionately high participation in the STEM fields compared to the general populace, regardless of gender or income. If that’s really the case, then it’s apparent that high schools need to prepare these students with the necessary skills for achieving their goals, as STEM fields are some of the most difficult to succeed in.

Another thing to keep in mind, especially if you are a teacher, is that a lot of individuals on the spectrum have unique (or at least different) learning styles. When planning for instruction, keep in mind that for the most part, students with ASD are visual learners, literal learners, and require consistency, according to this resource. For example, out-of-nowhere pop quizzes and numerous hands-on activities aren’t going to be very effective for most, as they’ll quickly lose interest and won’t absorb a single word coming out of your mouth. Be forthcoming and explicit with your expectations, don’t leave anything up for interpretation or else the student may not understand what they’re supposed to do in a given situation.

Additionally, try to keep the student engaged with other members of the classroom. If given the chance, many with autism will clam up and not want to socialize at all. This simply isn’t going to cut it in the real world, so try to prepare them by having them participate in group work. If you follow these tips, dealing with your student should be much easier.

> 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

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

Funding an iPad and Apps for Your Child

iPads and apps are becoming more common as tools for communication and academic participation. The costs are still fairly prohibitive for many families, however. There are several ways to look for information on funding sources and other ideas for obtaining an iPad or iPad apps for your child.
These are just a few. Be aware that things often change quickly in the online world. Organizations, grants, and other opportunities can come and go quickly, so these directories, such as the ones from Autism Speaks, Bridging Apps and iTaalk may provide links to organizations that are no longer active. For example, the Babies with iPads program is still listed in several directories, but gave away its last iPad in December 2014, saying it was just too difficult to continue to raise funds as a non-profit.
Directories of grants and other funding ideas:
• Autism Speaks Family Grant Opportunities (collected info from various organizations). This is a very comprehensive list. https://www.autismspeaks.org/family-services/resource-library/family-grant-opportunities
• Bridging Apps – Funding Sources for iPads and Mobile Devices: http://bridgingapps.org/funding-sources-directory/
• iTaalk Autism Foundation Resource page includes a list of grant organizations. They say it’s updated quarterly, so it should be fairly current: http://www.itaalk.org/#!resources/cqqo
• WonderBaby – 5 Ways to Get a Free iPad for Your Special Needs Child: http://www.wonderbaby.org/articles/ipad-funding-special-needs
Here are just three of the many granting organizations mentioned in the directories:
• Autism Cares: www.autismcares.org/site/c.mqLOIYOBKlF/b.4844551/k.9606/Technology_Grant.htm
• ACT Today: www.act-today.org/act-today-grant-program.php
• HollyRod Foundation’s Gift of Voice program: http://www.hollyrod.org/gift_of_voice

Other ideas for raising money:
Website Fundraisers – These websites will let you set up a campaign so that family and friends can donate funds.
• PayPal for Personal Fundraising https://www.paypal.com/webapps/mpp/fundraising
• Fundrazr https://fundrazr.com/
• Give Forward http://www.giveforward.com/
• The Puzzling Piece http://www.thepuzzlingpiece.com/
• GoFundMe http://www.gofundme.com/

Holiday and birthday gifts. Ask friends and families to give Apple/iTune gift cards instead of other gifts. Local businesses, community, or charity groups sometimes help with community fundraising by having special events.
Some credit cards give points that can be redeemed for an iPad or cash to purchase an iPad.

Finally, the Apps for Autism Facebook page will frequently list FREE apps offered by the developers, as well as the latest information on apps. https://www.facebook.com/AppsForAutism?ref_type=bookmark
Sources of information for this article:

Autism Speaks www.autismspeaks.org

Apps for Autism, Revised & Expanded Edition, by Jois Jean Brady, 2015.

Future Horizons http://fhautism.com/apps-for-autism-revised-and-expanded.html.

CARD-USF Launches Autism & Safety Kits

SafetyKit_Contents

Safety is an important topic for the families CARD supports.  As a result, we launched a campaign to address an array of safety concerns that an individual with an autism spectrum disorder may face.  As a result of a generous donation to our USF Foundation Autism Services Fund, CARD purchased the supplies, created the materials and assembled a kit that is available to eligible individuals at no charge while supplies last.

CARD-USF’s Autism and Safety Kit is designed to provide individuals with Autism Spectrum Disorder (ASD) and their families with tips, information, advice and resources to help those living with ASD stay out of harm’s way.

You may be eligible for a CARD-USF Safety Kit if you…

  • Have a diagnosis of ASD with supporting documentation
  • Have safety concerns around water, elopement, fire, and/or poisoning-the kit includes items that address those safety areas
  • Need assistance from CARD staff to teach safety skills

You will need to register with CARD-USF and provide documentation of an ASD diagnosis and live within our 14 county region.  Please call 1-800-333-4530 to learn more about CARD’s Autism & Safety Kit.  You can also visit our website for additional safety information and resources:  http://card-usf.fmhi.usf.edu/resources/materials/safety.html

If you would like to donate to support special projects, such as the Autism & Safety Kit, please visit our giving page through the USF Foundation http://card-usf.fmhi.usf.edu/community/fundraising.html

Water Safety is Critical

water safety tip

There are a number of swimming lessons and water safety education resources throughout the communities we serve through CARD-USF. They may or may not have expertise working with students with autism spectrum disorder. CARD-USF staff provide trainings upon request to various recreation programs, but even with our training, you need to make sure the instructors and programs you choose are right for your family. Please let us know if there are some terrific programs that worked well for your family so we can share the good news with other families. Here is a list of resources for all 14 counties we serve: swim lessons

Disclaimer: As a policy, CARD will not lend its name to the endorsement of any specific program, practice, or model that is offered for service to people with autism and related disabilities. However, the sharing of information and training opportunities are key functions of the CARD program.

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