Florida's First Choice for Autism Support

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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

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

CARD USF Discusses Autism Programs on Station AM 860

CARD’s Executive Director, Dr. Karen Berkman, Assistant Director Mindy Stevens, Susan Richmond, and Rob Lamke , Operations Manager at The Florida Aquarium, participated in a radio interview with Julie Ames host of Special Needs Family Hour on AM 860.They discussed CARD’s Autism Friendly Business Initiative, The Learning Academy at USF, and our collaboration with The Florida Aquarium. You can listen to the broadcast on Sunday, July 19th at 1pm on AM 860 or as a podcast on specialneedsfamilyhour.com

Radio photo

FIESTA in a Few Words…

CARD_Fiesta_logo

word cloud fiesta

Visit our website to purchase tickets & join the event page on Facebook for details about the event!

Sensory Friendly Family Concert Series

CARD and The Florida Orchestra collaborated to provide a sensory friendly experience within the orchestra’s Classical Kids Family Series. On Saturday, February 21st, the first of the sensory friendly shows, families enjoyed a production of ‘Goldilocks & The Three Bears”. While there, children were able to touch and play with the various instruments in the ‘instrument petting zoo’. Pictures and social experience stories were on hand as well to help facilitate learning about the orchestra. It was a great day for families and a fun way for children to discover an appreciation for music.

Missed this event? The next one, Whimsical Winds, will be May 23rd. For more information about the series and the next show visit the Florida Orchestra’s website

orchestra 1 orchestra 3 orchestra 4 orchestra 5 orchestra 6

ABLE Accounts: A New Financial Tool for Individuals with Disabilities

By: Olivia Macdonald, MPH, CPH

On December 19th, President Obama signed into law the Achieving a Better Life Experience (ABLE) Act. This now allows for people with disabilities to create savings accounts which would not affect their eligibility for Supplemental Security Income (SSI) or Medicaid.
These new ABLE accounts are expected to work similarly to existing 529 college savings plans. The individual with the disability, along with their family and friends, can contribute up to $14,000 a year to the account. While these contributions would be exempt from the gift tax, they would not be exempt from federal income tax. If more than $100,000 is in the account, SSI benefits will be suspended, but Medicaid eligibility will still be retained. Upon the death of the individual with the disability, the state will be able to recover funds from the account for some Medicaid expenses they have incurred for that individual. Only one account is allowed per person and the maximum funds allowed will be subject to each state’s decision. Funds from the account will be allowed to be spent on things such as healthcare, housing, transportation, and education.
To be eligible for an ABLE account, the individual must have a significant disability whose onset occurred before the age of 26. If they are also already receiving SSI and/or SSDI benefits, they will be automatically eligible to create an ABLE account. If they are not receiving SSI and/or SSDI, but the age of onset disability criteria is met, they could still create an account if they also meet SSI’s criteria for significant functional limitations.
The next step in the law’s progress will be for the Treasury Department to publish a set of final rules to guide state policymakers in establishing an ABLE account program for their particular state. These will inform each state’s guidelines regarding “a) the information required to be presented to open an ABLE account; b) the documentation needed to meet the requirements of ABLE account eligibility for a person with a disability; and c) the definition details of “qualified disability expenses” and the documentation that will be needed for tax reporting” (NDI, 2014). However, it is not required for a state to create an ABLE program, and some states may choose to contract with other states’ programs to offer ABLE accounts to its eligible residents.
ABLE accounts are expected to be available before the end of 2015.

You can learn more details about the new legislation, as well as steps you can take to prepare to open an ABLE account, by viewing the websites and video below:
“Congress Passes ABLE Act: Major Victory for Persons with Disabilities and Their Families”
http://realeconomicimpact.org/News.aspx?id=460

“Are Tax-Free ABLE Accounts The Right Financial Solution For People With Disabilities?”
http://www.forbes.com/sites/beltway/2014/12/04/are-tax-free-able-accounts-the-right-financial-solution-for-people-with-disabilities/

“ABLE Account Planning: Six Next Steps for 2015” by the National Disability Institute
https://www.youtube.com/watch?v=44d58G5GunA

Early Childhood Training Series

We have had great success with our “Early Childhood Training Series”. We originally geared this training for new parents of children diagnosed with autism, but we have had numerous professionals and parents join us. Participants joined us from CARD-USF’s 14-county region as well as from various other regions in Florida and even from other states! Our topics have included
“Positive Collaborations with Schools”, “Addressing Challenging Behavior”, and “Enhancing Communication”. Coming up next on our list of topics are “Creating Visuals”, “Addressing Feeding Issues”, “Addressing Sleep Issues”, and “Preparing for Summer”.
These trainings run on the first Tuesday of every month from 6:00pm to 7:00pm. To participate online via adobe connect visit http://usf.adobeconnect.com/card_ect at 5:45pm on the night of the training. Or you can join us in person. Please RSVP beverlyking@usf.edu one week before the date of the training as space is limited. We look forward to keeping this project an ongoing opportunity and welcome all feedback. If there are other topics of interest that you would like to see in the future please let us know.
Your Early Childhood Team

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