Kids & Family

A community of advocates linked by autism and bound by strength.

Episodes

EPISODE 27: LIVING A HAPPY AND MEANINGFUL LIFE WITH AUTISM

With Dawnita Shively

  

INTRODUCTION:

Sometimes it’s easy to just focus on the word “autism”, but let’s have our conversation today focus on passions and uniqueness. Let’s talk about setting goals for the individual and the expectation of your child having a happy, fulfilling and meaningful life.

 

Today’s guest is Dawnita Shively, a passionate BCBA and Clinical Director for Autism and Behavior Concepts– an organization that provides clinic and home-based services to children and adults with autism. She has a vast amount of knowledge and experience from her years in working closely with autism families.

 

Early detection & Intervention:

  • This is your child. If you feel that your child is not hitting milestones be persistent. Find someone who will take your concerns seriously and evaluate.
  • Allow yourself to grieve and start setting goals and expectations.
  • Do not let a diagnosis tell you who your child will become.
    • Like all of us, they will have their own goals and passions. Learn to accept those passions and help them by allowing access to interventions that teach lifelong skills.
  • Research the treatment options and decide what is best for your child.

 

School age:

  • Culturally children are expected to go to school. That is what parents strive for and if this is right for your child, push for it.
  • Remember that public education requires that children receive “free and appropriate” not “free and exactly what you want.”
    • Ask yourself what behavior impedes on my child succeeding in school.
    • Consult professionals to help you set reasonable goals and push.
    • Find a placement that understands that your child is an individual and use your child’s passions to help them succeed in life.
    • Know your rights and let the school know you are aware of what your child deserves and do not give up.

Adolescents:

  • Teenage years are difficult on all of us. Remember this is not unique to autism, try to relate, do not make excuses, and continue to set goals.
  • This is the time to start asking, observing and getting to know what motivates your child.
  • How can you help them grow in areas they enjoy so that they can have a happy and productive life?
    • Hobbies
    • Job Skills
    • Independence: We are happy when we can do things for ourselves.
  • Start thinking and talking about what lifestyle your child will have as an adult.
    • Reasses goals and barriers to that lifestyle.

 

Adulthood:

  • Remember to ask yourself what makes a productive and happy adult. Focus on these areas as goals.
  • Do not focus on Autism, focus on the happy and productive life.
  • Who in your life can help you support your child?
    • Reality is you will not be around forever.
    • You want your child to have a community, just like you have, to support them in their passion and goals.
  • Remember that all adults make choices that lead to success and happiness. Working with your adult child and knowing their goals will help you.
    • College
    • Job placement
    • Living with you

 

CONCLUSION:

Always remember that a parent is a child’s best advocate. Parents are ultimately responsible for making sure their child can have a happy and healthy life. By having these expectations, they can set goals to remove barriers that may prevent this from happening. If you are a parent or caregiver to a loved one on the autism spectrum, set goals for a life that is meaningful to your child and society, and know that autism does not define your child. Let your child define themselves, and support them in having the best life they can possibly have. Thanks for joining me today, and for being a part of My Autism Tribe. I’ll see you next week!

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EPISODE 26: AUTISM FAMILIES: HOW TO THRIVE IN CHAOS

 

INTRODUCTION:

How often do you find yourself saying, “My life is just chaotic. Will this ever end?” Today’s guest is a father and autism advocate that has worked tirelessly at not only creating a thriving home environment for his family, but many other families as well.

 

Kyle Jetsel, and his wife Shelly, are the proud parents of six children, two of them being on the autism spectrum. He’s going to be sharing his story on how his family is actually thriving amidst the chaos. They are coaches, confidants, and they truly understand what it’s like to be on the autism roller coaster. Over the past decade, they’ve developed strategies and techniques that have helped their family lower stress, and have been able to get back the family life they wanted. A life filled with joy, happiness and fun. It hasn’t been easy, but they weren’t afraid to work at it. Please welcome this inspiring guest, Kyle Jetsel.

 

CONCLUSION:

Raising children on the autism spectrum can be really hard. The chaos can sometimes feel overwhelming. Perhaps there are times you feel that your home is like a combat zone. But it doesn’t have to be that way. Now is the time to really roll up your sleeves, dig deep, and help your family get a whole new, better life that everyone deserves. We are here for you, for support, love and encouragement. Thanks for being a part of My Autism Tribe, and thanks for listening to the inspirational message of Kyle Jetsel. I’ll see you next week!

  

TO FOLLOW KYLE JETSEL:

 

WEBSITE:

https://thriveinchaos.net/

 

FACEBOOK:

https://www.facebook.com/AutismLaughterTherapy/

 

YOUTUBE:

https://www.youtube.com/channel/UCnzT4528uGk22RiAFAEKtjg

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EPISODE 25:  Autism - A Mother and BCBA’s Story

 

INTRODUCTION:

As you know, we’re always searching for wonderful stories and great information to share. On today’s episode, we’re speaking with BCBA and Founder of Proof Positive ABA Therapies, Heather Grimaldi. As a Board Certified Behavior Analyst and Clinical Director, Heather’s focus has always been on supporting the families and team members tasked with implementing behavior-analytic interventions. She built Proof Positive ABA Therapies to teach self-help and social skills with a family-focused approach and an emphasis on parent education. In 2016, Autism Learning Partners created one of the largest autism therapy platforms by acquiring Proof Positive (Heather has a funny story about this), and today she continues her work with families as a Clinical Liaison with Autism Learning Partners in Orange County, California. Please join me in a warm welcome.

 

CONCLUSION:

Our goal is to always share a diverse range of voices within the autism community; people both on and off the spectrum, from all walks of life, with all different backgrounds. We feel it’s important because we’re all in it together! We can all learn from each other, and we can all support each other. On good days and bad days. Thanks for joining me today and for being a part of My Autism Tribe. I’ll see you next week!

 

ABOUT SIMPLE SPECTRUM SUPPLEMENT:

https://simplespectrumsupplement.com/

 

The supplement is designed to provide the nutritional needs of the developing nervous system, with extra support for individuals with autism, by addressing potential dietary deficits. Working with Defeat Autism Now and Medical Association of Pediatric Special Needs affiliated doctors in her role as a BCBA, company founder Heather Grimaldi saw benefits of high-end supplement systems firsthand. Simple Spectrum is similar to a nutraceutical a doctor might prescribe, but at a much more affordable price, without the long drives and even longer waits. There are states and countries that don’t even have access to these types of doctors.

 

The Simple Spectrum mission was to create the kind of nutraceutical supplement based on the latest scientific research, and free from the extraneous additives packed into so many similar products on the market. As a parent of one child with sensory processing disorders and another with ketotic hypoglycemia, responsible for implementing food programs herself, Heather knows how hard it can be to get kids to eat the right foods and that includes her own kids. Simple Spectrum Supplement is an unflavored dissolvable powder without gluten, casein, added sugar, soy, binding agents, artificial colors, preservatives, GMOs and dairy. The highest quality vitamins, minerals, and other nutrients – Simple Spectrum Supplement really is quite simple.

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Today’s episode will be a solo episode, so no guest. I wanted to take the time to touch on a subject that sparks a lot of frustration in the autism community. What does autism look like? I often am told that my son doesn’t “look autistic”. Even though I know that most people are not intending to be insensitive, it still bothers me. Yes, my son is the most beautiful thing that I’ve ever laid eyes on, but his beauty is more than skin deep. Autism does not define him, and I have never let his autism diagnosis precede him. So how do you respond when someone says something like “your child doesn’t look autistic”?

 

I use this question as an educational platform; an opportunity to present information in a conversation. I usually say, “If you want to know what an autistic child looks like, look at your own child or grandchild. Look at the children who live next door to you and take a glimpse at every child you walk past on the street. These could very well be the faces of autism. There is no visible indication that a child is affected by this neurological disorder.”

 

Autism is the king of all tricksters. I know this to be true because there have been times when I took my son to the store or doctor’s office and received looks of confusion or frustration in response to his sometimes-odd behaviors. Unless I inform someone, no one has a clue that he is autistic.

 

From time to time, I find myself getting upset about the glares from individuals who would never think autism is the culprit for these odd behaviors. There have even been occasions when I’ve had to get a little confrontational with those brave souls who dared to make a rude comment or stare for just a little longer than necessary. But, after all of the annoyance and rude exchanges, autism still lingers. It seems to me the only thing left to do is educate rather than disassociate. I believe this is where acceptance and inclusion come into play.

 

So, what exactly is autism? A lot of people I’ve crossed paths with have no clue as to what this disorder is and are even quick to misconstrue the meaning of autistic with artistic.

Autism doesn’t have anything to do with the arts; our children are extremely talented, but artistic and autistic are two different things.

 

Autism is an illness that affects social and communication skills. Some Autistic children have a hard time playing with others and making friends and some are nonverbal. Many autistic children display behaviors that may include: repetitively pouring liquids from cup to cup, spinning around and not getting dizzy, not wanting to be touched or hugged, lining up toys and screaming for hours. Of course, every Autistic child is different. There are varying levels of this disorder and that’s why it is called a spectrum.

 

Some individuals on the low end of the spectrum are nonverbal and are only able to show what they want by taking others to it or bringing someone a picture. The fact that they can’t communicate is the reason for most of their severe meltdowns.

 

Imagine for a moment being frustrated, but not being able to express why. Imagine you have a toothache, but you’re not able tell anyone. Think how you would feel if you really wanted affection, but a simple stroke of your skin caused physical pain.

 

These are just a few of the things autism individuals must face and because of this, I have made a promise to my son and others on the autism spectrum to put up a good fight. To be their voice if they don’t yet have one. To be not only their advocate, but a part of every family’s support system.

 

Right now, no one expert has been able to confirm what causes autism, but one thing is certain: bad parenting IS NOT the cause of this impairment. Unfortunately, we still have some who are ready and willing to wave the idea around that a parent can inflict autism onto their child. There are a few people I know who are still quick to say that there is nothing wrong with autism individuals, but they only need to be disciplined. Although such an accusation hurts deeply, I now understand that it doesn’t matter who the person is or how well educated they may think they are on the subject of autism; no one can truly comprehend what it’s like to raise an autistic child unless they are raising one themselves.

 

When my son was diagnosed three years ago, I was hesitant to speak of his diagnosis. It wasn’t that I was embarrassed, but on the few occasions when I did reveal his autism diagnosis, I was inundated with sometimes hurtful questions like, “Oh, how many toothpicks can he count at one time, what musical instrument does he play, oh he’s like Einstein”. Too many questions, and not enough answers. Then I realized, by keeping silent on my son’s diagnosis, I was disassociating from our community. Think about it. Progress has never been made in history, without those voices that sparked tidal waves. That moved mountains. Autism is a part of my family’s life and it forever will be. A long time ago I accepted that my family doesn’t fit into an ordinary mold; we do what we can to get over every challenge that autism presents to us, and we find beauty amidst the chaos.

 

I laughed in the face of autism when my son started reading at an early age, when he was able to get a haircut without screaming, to play in the sand without hesitation. We have shown and proved that autism will not come in between our dreams of normalcy and happiness.

 

Still, there will forever be a battle to win with those who feel a disability is only a disability when it screams out at you from a wheelchair. There will always be one individual who thinks a good whipping is the only cure needed for an autistic child.

 

Sadly, for the millions of parents who know better, we can only continue to do what we do best: love and support our children. Nobody else will do it better. We are the keepers of disappointment when we find that medical insurance does not cover expensive and much needed therapy. We are the proactive and often angry parents questioning why sensory integration and assistive technology aren’t incorporated into our children’s individual education plan or (IEPs).

 

And some of those children are the ones you see in the grocery store shrieking at the top of their lungs or darting off nonstop at a moment’s notice. So please, don’t be quick to judge the parents. Looks are very deceiving. Take into account that it may not just be bad behavior; it may be autism.

 

In every situation, we must remind others there are behavioral strengths of children with autism, and those strengths can be expanded. Just like neurotypical individuals, those with autism have a wide range of talents. A child with autism may be able to play a song on the piano without sheet music, but will avoid interaction with peers. At school, perhaps the child’s piano-playing skills may be incorporated in the classroom to help increase communication with peers. For example, a teacher could make a game of “name that tune”, encourage turn-taking at the piano, have the child teach peers about the piano. Teachers could also make use of the vast knowledge a student with autism may have on a particular topic. For example, if a student is fixated on train routes, a teacher could have that student develop a presentation with peers regarding specific routes, draw a wall-size map of routes, and incorporate in lesson plans regarding transportation, communities or history. Any of these activities could be beneficial not only to the student with autism, but his or her peers as well.

 

Autism is what makes it difficult sometimes for my son to communicate with others, but this doesn’t mean that I can’t work with others to teach them how to communicate with him. Autism makes him sometimes unaware of social norms, and how to form relationships with peers. Autism is trading in soccer practice or piano lessons for speech therapy, occupational therapy, and ABA therapy. But autism also looks like the pure joy on his face when he is swimming, or snuggling with me. The confident smile he gets when he is brave enough to try something new. Autism in our family teaches us to celebrate and appreciate every single thing.

 

Autism is a diagnosis, and nothing more. As you may have heard, “It doesn’t come with a manual, but parents that never give up.” Just like I am instilling bravery and strength in my son, he is teaching me to be brave, strong, and courageous, too. He has taught me that even when I’m tired and feel like giving up, I can keep going. My son has taught me that there are many other ways of communication than simply just speaking. I knew my life had purpose before my son, but now I truly know what I’ve been put here to do. I am an autism parent, and I will never, ever give up, no matter what it takes.

 

Thanks so much for being a part of My Autism Tribe. For staying strong, and brave for your loved ones and your community, and for helping me teach others about the beautiful differences of autism. The next time someone asks you what autism looks like, I encourage you to take the opportunity to educate. Together, we are one voice made stronger. Keep up the great work, and I’ll see you next week!

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July 1, 2019

Teenaging with Autism

EPISODE 23: TEENAGING WITH AUTISM

“A Personal Look into Their World”

 

INTRODUCTION:

Autism is a an extremely complicated diagnosis, and when you add teenage hormones to the mix you sometimes get a new set of behaviors and possibly some challenges.

My son is 5 now, but I know he will be a teenager in a blink of an eye. I thought it was important to share with you a look into the world of a teenager on the spectrum. Words cannot even begin to describe just how proud I am to introduce today’s guest. Her name is Kennedy, and she’s my niece. I’ve watched Kennedy grow into such a beautiful and lovely lady. This girl has SO many strengths (many of which she may not even claim to have or may not even be aware of), but I’ve also seen the struggles; the complications that she experiences. So, I thought I would have a personal conversation with her, so I could better understand her views, her opinions…a look into her world. Please join me in a warm welcome to one of the pieces of my heart. My niece.

 

CONCLUSION:

I speak with A LOT of parents whose children are entering into the teenage world, or have been in this world for a while. Here are some tips they have given me:

 

  1. Don’t ask too many questions. I believe all teenagers in general would agree with this one, but for those on the spectrum, they usually hate being “quizzed”. This can make it difficult as a parent because we really want to be involved in our children’s lives. Well, sometimes they may feel like they’re being interrogated. Perhaps instead of asking “How was school?” or “What did you do today?”, ask them about their interests. Is there a subject they are studying in school that they are REALLY into? You might be surprised at how long they’ll want to talk about it.
  2. Bring solid evidence to the table. Sometimes they have a hard time recognizing social rules, so maybe avoid saying things like “Because I said so” or “Because I’m your Mom or Dad”. Instead use facts, rules (or even LAWS) to back up why.
  3. Don’t scold their behavior before understanding what it truly is. When a teenager with autism doesn’t respond to your questions, or walks away without saying a word, don’t assume they are being rude. Sometimes the social interaction is difficult, and maybe even painful for them. You don’t know what they experienced that day. They are self-regulating in a world every single day that can be loud, overwhelming, and the last thing they’re thinking about is whether or not it’s bothering you.
  4. Text messaging might provide better communication. Most of us live on our phones, which is a good and bad thing, but think about it…sometimes it may be more relaxing for us, or more comfortable for us, than actually speaking on the phone. We’re able to collect our thoughts before responding, giving us more time to respond in a more appropriate way, perhaps. For people on the spectrum, this can be a huge plus.
  5. Be patient. Yes, there might be things that they say and do that you find strange or different, but just know they are living in an overwhelming and complicated world and are just learning how to navigate it all.
  6. Just be accepting, autism and everything. We were all teenagers at one point in time, and we were all struggling to find our identity, deal with our emotions, trying to figure out our place in this crazy world. Try entering their world instead of trying to force them into yours. You may be surprised at just how much beauty there is amidst the chaos.

 

Thank you so much for joining my niece and me today, and thank you for being a part of My Autism Tribe. Keep up the great work, and I’ll see you next week!

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