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Posts tagged ‘CARDUSF’

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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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

The Importance of Person-First Language

You may have heard the term “person-first language” before (that’s person-first, not to be confused with first-person, a point of view); simply put, it’s a manner of speech which aims to avoid any kind of dehumanization or marginalization amongst those with disabilities. Now, there is some controversy surrounding the usage and importance of person-first language, but we here at CARD believe its use to is of the utmost importance. I’ll go more into it in this, but if you would like to read more about what person-first language is, here’s a link to a page explaining it in great detail: https://www.thearc.org/who-we-are/media-center/people-first-language.

 
First of all, what is person-first language in the context of speech and writing? Let me give you an example: instead of saying “that autistic boy,” we prefer “that boy with autism.” Autistic is an adjective; i.e. a word that describes or defines something/someone. In our opinion, a person should not be defined by their disability, be it autism or some other condition. Autism may be a part of who they are, but it is not the main aspect of their identity. When describing others, most people will say, “that girl with the long hair,” not “that long-haired girl.” The long hair is just a part of who she is, not what defines her. While not an offensive or even particularly distasteful example, the same concept applies here. If we utilize person-first language for such mundane things as hair color, then why not do the same for autism?

 
There is one other thing I would like to add, and it’s the main reason why I personally advocate the usage of person-first language, especially in regards to autism. There is a particularly nasty trend going that’s been going around, mostly on the internet, which uses “autistic” as an insult for behavior and/or actions deemed undesirable. To use a personal example, I have played many games online where I witnessed someone make a simple in-game mistake, to which many will viciously attack that person, calling them autistic just because they didn’t fit their definition of perfect. It’s even happened to me, and it’s very upsetting. For a long time, “retarded” has unfortunately been a rather prevalent insult, but now the vocabulary is expanding to include autism specifically, and it saddens me. The thought that calling someone “autistic” carries such a negative connotation is a disheartening thought, but it’s just another reason why I believe person-first language is the way to go. Being on the spectrum is nothing to be ashamed of, and you should be proud of who you are!

  • G. Sosso

 

People First pic

Spectrum Employment Strategies

One focus here at CARD is helping adults on the spectrum find employment at a job where they can excel. Because of this, we know the struggles that these individuals will inevitably face on this crucial path. Even the most talented, hardworking of people with ASD can struggle with some social, communication, and behavioral issues that might dissuade potential employers from looking their way. Here in this blog, I want to highlight some of the strategies people on the spectrum can utilize to make themselves more appealing in the job market. If you follow these tips, hopefully it will help you take that next step that you deserve.

 
Knowledge is power, and the most important thing you can do for yourself is to know your rights. As a person diagnosed with autism spectrum disorder, you are protected under the Americans with Disabilities Act (ADA), and the Rehabilitation Act. The ADA is, essentially, a “wide-ranging civil rights law that is intended to protect against discrimination based on disability”, while the Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by Federal agencies. I highly suggest reading this, from their official website. It explains it all in a very easy to understand manner. Knowing all this is important so you are not taken advantage of. Companies are legally obligated to give you a fair chance just like everyone else, and as long as you realize this, you will be in good legal standing if you feel discriminated against.

 

Of course, just knowing your rights doesn’t guarantee you a job by any means. You still have to deserve the job in the employer’s eyes, so here are some things you can do to show that you will be a productive member of the team. First of all, realize that autism is not some crippling disease, but in fact something that makes you unique, and gives you a distinct skillset! Many people on the spectrum are lauded for their trustworthiness, reliability, creativity and low absenteeism. Stress these things in your job interview (if they apply to you, of course). Unfortunately, many employers have a negative stereotype of workers on the spectrum, so it’s up to you to prove to them that those things aren’t true, and that you would be a valuable asset to the team. Also, and this goes for everyone, not just those on the spectrum, but following up is essential if you want the job. Be persistent. Let them know that this is important to you. It will show them your determination, and will make them believe that you will be just as hard of a worker as someone not on the spectrum.

 
Now, getting employed is only half the battle. Keeping a job can be just as difficult, if not more so. That will be the topic of my next blog; until then, I hope these strategies will help you in your road to employment.Good luck!

Visit our websites for more information about CARD or The Learning Academy

  • G. Sosso

Still Learning from My Adult Child with ASD

noise
Long ago, I stopped accepting most of the things that are supposed to be true about people with autism spectrum disorder (ASD). Recently, I was reminded about two of these supposed “truths”:
     1. People with ASD make meaningless sounds such as humming, and sing or recite content from movies just to hear themselves make noise.

     2. People with ASD have sensory processing issues that must always be controlled externally by altering the environment or providing them with additional tools such as weighted blankets, noise-cancelling earphones, or other sensory-calming products.

Whether verbal, non-verbal, or somewhere in between, our children have a lot to teach us about how they perceive and process the world around them. Perceptive parents quickly learn a lot from their offspring – about ASD, about children with other differences, and most importantly, about their own children as individual human beings.

This is a little story about tuning in to my 26-year-old daughter, whose habits, movements, sounds, and sensitivities I know almost as well as I know my own, though I don’t always understand the communicative intent of her behaviors.
Three mornings a week, a van arrives to transport Anna to her day program.
Every morning for several years, she would pace, recite movie lines and hum in an agitated manner with her fingers stuck in her ears in anticipation of the van’s arrival. As it pulled up in front of the house and the horn honked, she would gasp loudly and push harder on her ears, then walk out to the van holding both her lunchbox and her ears.

For the past month or so, there has been the same van, same driver, and two quick honks on the horn, all of which have made much of the morning more predictable and easy. However, the time of arrival still varies each day, and that still meant there was enough unpredictability that waiting was anxiety-producing.

Over the last few weeks, Anna would pace, cover her ears, hum and chatter only for a few minutes, then as the time drew nearer for the van to arrive, remove her fingers from her ears, and peer intently out the window. Inevitably, within 60 seconds of the time the van actually arrived (how does she KNOW that?!), she would softly insert her own closely approximated version of the tone, pitch, and time interval of the two quick horn blasts into the rest of her chatter. “Yada yada yada yada beep beep yada yada yada yada.”

It took a few days for this to get my attention, but once it did, I also noticed she no longer gasped and clamped her hands over her ears when the van arrived, and it dawned on me what she was doing. She was preparing her sensory system for the unpredictability of the arrival time, using her own version of the sound of the horn, something like an auditory immunization. It’s brilliant! All of the muttering and chatter seems to be meaningfully connected to the two little honks she makes.

So – two things are still true, after all these years:
• never assume odd noises and sounds are meaningless, and
• it’s easy to miss noticing when our children teach themselves calming and self-management techniques on their own and apply them to specific circumstances.

This story does not negate instances where self-produced sounds may be stimulating or reinforcing for unknown-to-us reasons, nor does it argue against the anecdotally reported benefits of sensory-integration tools and techniques. I appreciate fellow parent Beverly K. for pointing out that we especially need to remember many of our younger children have not yet developed self-management and self-regulation skills to help them deal with bothersome sensory input. For parents of younger children – when people tell you, “It gets better” – this is the kind of wonderful thing they mean.

Watch and listen closely! We never know what our children, no matter what age or ability, might have to teach us!

  • Jean

Autism & Safety: Resources for Families

This past weekend we heard heartbreaking news that another child, a 5 year old boy with autism, wandered off and was found in a nearby canal. It is important that we work together, as a community, along with our local police departments, to ensure that our children are safe by taking necessary precautions. There are many resources out there regarding water safety, elopement and working with first responders.

CARD-USF launched safety kits last year for constituents within our 14 counties here in Florida. The kit contains vital information, door alarms and other components to help families secure their homes and be prepared in case of an emergency. You can visit our website’s safety page for more details about our kits and other resources regarding wandering, water safety and medical ID bracelets. There you can also view contact information for your local police department regarding Project Lifesaver.

Another great resource for families nationwide is the National Autism Association and their Big Red Safety Tool Kit.

Even though we are in the winter months swim lessons and teaching water safety is vital. Last June, we posted a blog regarding water safety and provided a list for local swim lessons within our 14 counties.

If you are in Florida we encourage you to reach out to your local CARD center for more information regarding autism and safety. We must learn from these tragic stories and work to ensure that this doesn’t happen to another family.

~A. Ruiz

 

 

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