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Having a Sibling with Autism

kids-walking-image

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.” – Albert Camus

Admittedly, having a sibling on the autism spectrum can be stressful at times, especially if the two of you are close in age. Growing up, it’s unlikely you’ll receive the same attention from your parents that they do. That is, of course, nobody’s fault, but for a young mind it can be hard to comprehend why your brother or sister is getting more attention than you. There’s also the unavoidable issue that if you’re not used to the behavior, dealing with someone (especially a child) with autism can be difficult. Many are prone to outbursts or tantrums, can’t fully understand social cues, don’t take an interest in a wide variety of activities, etc. But there’s so much more to it than that. There are few things more beautiful than the bond between siblings, and just because yours may have ASD doesn’t mean you can’t form that special relationship. Here are some of the unique advantages to having a sibling with autism; hopefully after reading this, you will gain a greater appreciation for your sibling.

First of all, you will gain a unique perspective of the world vicariously through your sibling. Kids on the autism spectrum almost always have a different outlook on life, and see the world in a unique, individual way, totally outside the norm. As the sibling without autism, you will learn very early on that the world is in no way black and white. There is no absolute binary on how things can be done, but rather, just like autism, there is a whole spectrum of possibilities. With good parental guidance, you will come to learn that individuality is something to be cherished and valued, not shunned. From your experiences dealing with an autistic sibling, you will go into adult life with an open mind and the ability to see the world from multiple viewpoints. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity.

This brings me to my next point: creativity. One of the few universal traits of ASD is a difficulty in communication skills. But siblings, as I mentioned before, have a special and unique bond that allows them to understand each other on an entirely different level, autism or not. Considering the uniqueness with which those on the spectrum see the world, often being very creative, that rubs off on the other sibling. Simply having that connection exist and gaining firsthand exposure to such an exceptional worldview opens the mind to new creative potential. Desires to express oneself through music, visual design, writing or the arts can manifest in grow for both siblings, creating a symbiotic relationship.

The last point I want to talk about is how it can make you a far more accepting, compassionate person. Like I pointed out, having a sibling with autism can be a difficult thing, and their behaviors erratic at best. However, I believe this also presents an opportunity to grow into a better sibling and thus a better person overall. Growing up, you naturally come to know your siblings better than anyone else, and how to deal with all their little nuances. Dealing with the worst behaviors autism has to offer all throughout your formative years molds a person into someone who can empathize with just about anyone, and I believe you become all the better for it.

I would like to recommend this blog from Autism Speaks, from the perspective of a young lady whose brother has autism. It’s a great insight into everything I’ve been talking about, and I enjoyed reading it immensely.

  • 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

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

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!

gage and mom

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

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

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