Kids & Family

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

Episodes

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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EPISODE 22: THE REAL, THE RAW, AND THE UNCOMFORTABLE

“Autism and Single Parenting”

 

 Hi, everyone! This is Susan Scott, the founder and executive director of the nonprofit My Autism Tribe, and host of the My Autism Tribe podcast. This is the first podcast where I am flying completely solo, and I must admit…I’m a little nervous (laugh). I’m nervous for several reasons: 1. I’m doing this all alone, so I have no one else to help me carry today’s topic, 2. I want to make sure that I represent this topic fairly and truthfully, and 3. This topic places me in a really vulnerable position. It’s real, still very raw, and most definitely uncomfortable. BUT this is where we find growth, right? I mean, my son is placed is uncomfortable situations every day, so why shouldn’t I place myself in uncomfortable situations?

Today’s topic is single parenting with children or loved ones on the autism spectrum. I know this topic doesn’t intimately touch everyone, but perhaps you know someone that is on this journey, and perhaps you still (even though not divorced) will relate to many of the points that I discuss today. I get asked (A LOT ACTUALLY) if I believe autism, in some way, lead to my divorce. I’ll go ahead and answer this question now, so we can move on. No. No, it didn’t. Not at all. Did it add stress to our relationship? Sure, but all marriage has stress. It’s how you choose to deal or not deal with it. I’m not going into details that lead to my divorce, out of respect for my ex-husband, but if I had to summarize our extremely long story into a very small nutshell, I would just say that we had different priorities…and I’ll leave it that.

When my marriage ended, I felt so many different emotions. I had guilt, anger, depression, and (just being honest here) relief. I felt every single one in a very deep and powerful way, but it was important that I felt all of these emotions because that was part of my healing process. I was grieving a relationship death, and entering into a world of unknowns as a mother with sole custody of a child with special needs. I honestly didn’t know if I could do it, but here I am. Still breathing, still loving, still caring, and dare I say, even enjoying life again. I’ve learned to trust myself, embrace new possibilities (just like this!), and I’ve put one foot in front of the other. I’ve surrounded myself with friends and family who not only support my decision, but have grown to understand the many reasons that I did what I did.

Divorce is such a difficult decision to make, because it affects so many people. It not only affected my son, my ex-husband, and myself because we had to redefine what our version of “family” was, is, and will be in the future, but it affected our extended family and friends.

I soon realized that single parenting a child, especially one with special needs, can be isolating at times, but it is doable. It also feels like piloting a single-engine plane in a storm, but you always come out the other side. Single parenting is super tough – I’m not going to sugarcoat it. I’ve been fortunate enough, through this platform and through other intimate conversations that I’ve had with other parents on the same journey, to hear their fears, frustrations, and I thought I might share some of these with you as well. Granted, single parents with children on the spectrum do not experience these fears or frustrations every single day, but I found that AT LEAST one time or another, I drew a line to every one…and I know that parents and caregivers who are not divorced have experienced many of these as well. Let’s get started.

Exhaustion: Where do I even start with this? Maybe with the word coffee? When you’re a single parent, you’re doing (most likely) everything by yourself. You’re maintaining a job, coordinating therapies, fixing breakfast, lunch and dinners by yourself, supervising everyone in your child’s life, educating others, advocating for your child. This list goes on and on and on. I’ve reached places of loneliness that I didn’t know existed…foreign lands that I had only read about in books. That’s one of the reasons that I formed My Autism Tribe. You guys just get it. Divorced or not.

Another one is financial stress. This one is a doozy. Not only are you putting food on the table, clothes on everyone’s body, paying the mortgage or rent, putting gas in the car, but also paying for therapies, insurance, child care (in the case that the stars align and you are actually able to go out and do something for yourself), assistive technologies if your child needs them, extracurricular activities, books, etc. It’s a lot, but one thing I learned very early on, and this was before marriage, before a child, was to create a budget. I make a list of all our needs, sprinkled in with some wants, and I balance the numbers. Sometimes, a lot of times, it’s in the red…and that is terrifying. Last September, the company I was working for as Vice President of Client Services, decided they were closing their doors. I’ve never let fear rule my life, I’m a risk taker by nature, but I don’t think that I’ve ever been more scared or uncertain about anything before. I couldn’t find work…literally applied to thousands of positions and was either told I was over-qualified or the position had already been filled. (This is the part that is really, really uncomfortable). I was not only feeling like a failure as a professional, but I felt like I was failing as a parent…not doing enough or everything that I should be doing to provide for my son. We were living on my savings, and thank God we had them. I’ve been doing some consulting work, but we’re not back to where we were. And I’m trying to find peace with that. The school that my son attends found a grant that helped us pay for some of his speech therapies until I could get back on my feet, and that helped a ton. Every little bit helped. Several family members also pitched in to help pay for a few things. Anyone that knows me, knows how much I hate this…I hate asking for help, taking when I can’t give, but I was literally left with no choice. I was humbled, and maybe that’s exactly where I needed to be.

This next one is super frustrating, but I’m learning to understand a bit more. It’s when people tell me to “take care of myself” that “self-care is important”, but I often have no one else to take my place so I can. And then, when I finally do (rarely) have time for that quote/unquote “self-care”, I’m feeling guilty because I should be with my son, because I know him inside and out, because I can understand him when he is having trouble expressing his wants or his frustrations. I, by nature, am (what people like to call) a “mover-and-a-shaker”. I am never quite “still”, always going, always thinking, so the notion of actually relaxing can be somewhat foreign to me (laugh). I’m trying to learn more, understand, and wrap my mind around this self-care thing. Right now, most of the time, my self-care is indulging myself in Netflix and eating popcorn in bed after my son is asleep. Exciting, I know. Don’t be jealous. I’m not the best at prioritizing, I admit, because everything in my mind is the most important all of the time. BUT, I’m going to try my best to becoming better at this, and I want you guys to hold me accountable. Perhaps send me some suggestions on this. How do you DO “self-care”?

So, there are other frustrations and challenges that certainly pop up in this single parenting thing, but these are the big whammies for me. On the flip side of frustrations, there have also been many things I am grateful to have learned and experienced.

I have strength and courage I didn’t know I had. Shew! The Susan 20 years ago would NEVER have thought in a million years that she could pull this off. Sure, I knew I had strength, but this whole journey has allowed me to see pieces of myself that really…I’m quite proud of.

I’m also learning to be mindful and to celebrate little successes, and this has in turn increased my patience. I used to be one of the most impatient people, but since there have been days of very literally putting one foot in front of the other, it has allowed me to be more in the moment…exactly where my son wants and needs me to be.

I’ve also gotten to know some AMAZING people, like yourselves! The conversations, the interactions, the experiences that I’ve had with other advocates, other parents and caregivers, who not only have such compassion, but also a sense of humor. This, to me, has been a miracle. I may not have emphasized enough, or even mentioned at all, but the strength that I’ve gained through the circle of friends that I’ve met along the way – you have been my life jacket, keeping me afloat on days that I thought I would most definitely drown. So thank you.

And now, maybe I can share a few tips with you that have helped me. Some of these I’m better with than others, and I truly feel like these most of these tips can work for not only single parents, but all parents or caregivers, in general.

  1. Don’t sweat the small stuff, because so much of everything going on is “small stuff”.
  2. Don’t speak poorly of your ex, because your children can hear everything and they understand more than we sometimes give them credit for.
  3. Our children can feed off our emotions, whether or not they can let us know it or not. My son can feel my tension at times, and those are the times that I feel like his stimming increases.
  4. Don’t be afraid to seek counseling.
  5. This may be silly, but just know that it’s ok to buy disposable plates or cups so you don’t have to do dishes. This can be time saved for doing other more important things.
  6. Sleep when you can, where you can. I remember several times, taking my lunch break in my car in a parking lot where I was able to catch a tiny nap. It helped! I didn’t care what other people thought. Although, one time a very nice gentleman tapped on my window to see if I was alive. (laugh) Bless his heart.
  7. Find a support group or another parent of a child with autism. They will keep you sane.
  8. Get help in navigating health insurance. It’s ok to not know everything. Insurance is a BEAST, and knowledge is power.
  9. This next one may sound kind of harsh, but it has helped me on my journey. Get rid of anyone in your life who causes you additional stress. Real friends are the ones who “get it” without needing an explanation. Family is a little trickier to navigate, but don’t be afraid to let them know that you are setting boundaries, and will not participate in any negative conversations about your child. That’s ok to do.
  10. And lastly, start by realizing that autism is something that is forever. I don’t discourage early intervention (I actually highly encourage it), but you have to pace yourself, while still allowing your child to be a child.

I hope this helps at least one person out there, and I sure hope that I didn’t say anything that offended anyone in any way. It certainly wasn’t my intention. I always want to make sure that I am not only sharing your stories, but also letting you hear my story as well. Sometimes it has a good ending, and sometimes it has a not-so-good ending – but regardless, I feel like it’s a story still worth sharing.

Thank you for supporting My Autism Tribe, and thank you for allowing us to support you. You never know just how important support is, until it’s the only thing that you feel like you have. For you, I am grateful.

Keep up the great work, and I’ll see you next week!

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June 17, 2019

Autism & Fitness

EPISODE 21: AUTISM & FITNESS

“Tailoring Exercise Programs to Match Needs”

  

INTRO:

It’s widely known that physical fitness and exercise lead to better physical health, but it’s less widely known that there are both mental and behavioral benefits as well. Experts have proven that consistent exercise improves concentration, attention, organizational skills, which leads to a reduction in problem behaviors.

 

Today’s episode features Mark Fleming, founder of Puzzle Piece Fitness. He was diagnosed at the age of 3 with PDD-NOS, then formally diagnosed with autism at the age of 11. His “special interest” growing up was sports. He constantly heard how he was able to read the box scores in the paper before he could even read. He also had fine motor skill deficits that prevented him from playing the sports he loved so much, but he had something greater - parents that not only allowed him to play, but pushed him to play. After graduating with his Bachelors and Masters from the University of Alabama, he set a goal of using functional training with individuals in the autism community. He not only incorporates strength and cardiovascular training, but also incorporates exercises that help with motor planning and social skills. He wants to be a person that these individuals can turn to, so they can see they are not alone or helpless in this weird world we live in.

 

ABOUT PUZZLE PIECE FITNESS:

Mark founded Puzzle Piece Fitness, LLC as a means to improve the quality and quantity of the lives of individuals on the Autism Spectrum and Related Disabilities. Growing up his "special interest" was sports. He constantly heard how he was able to read the box scores in the paper before I could even read. However, he also had numerous fine motor skill deficits that prevented him from playing the sports he loved so much, but thankfully had parents that not only allowed him to play but pushed him to play. He was never able to realize his dream of playing sports professionally, but was able to find a new love of fitness in college. After receiving the majority of his education towards a Masters degree in Exercise Science, he was given an opportunity to work as a behavior assistant with an applied behavior analysis company working with individuals with Autism. Through his encounters while working in this field plus the encounters he had through volunteering and coaching in Special Olympics he noticed two startling trends. The first is that outside of school physical education, many individuals with Autism have very few opportunities to stay active and healthy. The second is that physical and occupational therapies provide great opportunities for this population in terms of being physically active, however, the therapies usually only cover obvious deficits and services are stopped once those deficits are corrected or the individual ages out of the school system. He continued to see individuals with little opportunity to stay active and even fewer opportunities for them to receive proper instruction of correct movement and form. After realizing that he could help provide these opportunities, he reached out and learned from the few others in the country that have been exercise training these individuals for years. After learning as much as he could, he decided to start a business providing personal exercise sessions for this population. 

Puzzle Piece Fitness LLC, is a personal training service. He does not consider this to be a typical Autism or Related Disabilities kind of therapy. Exercise is a therapy that everybody in life should participate in and is life long and thus there are no "graduation" achievement milestones. His goal is to use some functional training with these individuals that not only incorporates strength and cardiovascular training, but also incorporating some things within the exercise that can help motor planning, improvement of social skills, and possibly increase cognitive functioning. He wants to be a person that these individuals can turn to, so they can see they are not alone or helpless in this weird world we live in. 

 

CONCLUSION:

Children on the autism spectrum are still children! They can play catch, swim, play, run, just like their neurotypical friends. Perhaps they need to be taught in an “adapted” way. Break down complex motor skills into small tasks and teach them step-by-step. Perhaps adjust the rules of a game as necessary if they are struggling to remember them.

It’s absolutely imperative that every individual, regardless of ability or age, have access to exercise programs that are tailored to their needs.

Thanks so much for joining me today and for being a part of My Autism Tribe. I’ll see you next week!

 

ASSOCIATED LINKS:

Puzzle Piece Fitness (website) - https://www.puzzlefit.com/

Puzzle Piece Fitness (Facebook) - https://www.facebook.com/puzzlepiecefitness

Puzzle Piece Fitness (Instagram) - https://www.instagram.com/puzzlepiecefitness/

Puzzle Piece Fitness (LinkedIn) - https://www.linkedin.com/in/mark-fleming-23a2115a/?trk=hp-identity-name

 

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EPISODE 20:

If you mention autism to most people they will think about children, but it’s a lifelong diagnosis. Children with autism grow up to be adults with autism. 

We are all aware of the challenges of raising a child with autism, but what we don’t always think about is what happens when our child reaches adulthood – the added challenges and concerns that come with it. From job opportunities to housing, there are so many aspects to think about.

Today’s guest is autism mom Malinda Dalton-Cook. Her beautiful daughter Paige is 17 years old, non-verbal with additional concerns of epilepsy and severe food allergies. She’s going to share the fears and questions that her family are discussing now.

  

CONCLUSION:

It isn’t clear yet whether people with autism age in the same way as people without autism. This diagnosis as a whole is considered to be relatively new. But one thing is certain – we all deserve to age as well as we can. It’s only by continuing to understand how people with autism change as they get older, that we can really start to put the right services in place to support them. My biggest fear for my son is – how well will he be provided for when I’m gone? He’s only five, it’s my goal to start early. Plan ahead. These kiddos don’t stay young forever.

Thanks for joining me today, and thank you for being a part of My Autism Tribe. See ya next week!

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EPISODE 19

Three years ago, my son Alex was diagnosed with autism and our expected journey changed. I was intimidated, panicked, fearful, distressed. It was a dark and confusing time. Once I wrapped my head around the diagnosis, started digging for resources and support, and over time, I’ve found pieces of advice that might help you on your journey.

Today’s guest is Tani Stevenson. She’s an autism mom of four, with two of her precious kiddos on the spectrum. We’ll be talking about the journey after receiving an autism diagnosis. She’s such a delight, and I hope you find this episode inspiring, perhaps a bit funny, and educational.

 

ADVICE:

#1: Don’t jump to conclusion. There will be so many people telling you so many things – it can be intimidating. Chin up! Push forward!

#2: Things could be worse! Autism is not a tragedy. It will all be ok!

#3: They’re still your beautiful child – with or without a diagnosis.

#4: Do not blame yourself! There isn’t anything that you could have done to prevent your child’s autism. Yes, you may receive stares in public. There will be uneducated people who ask you rude questions. It gets easier with time, and advocacy does wonders for your community.

#5: Do not stay in a dark place. Everyone has bad days, but don’t stay there. Reach out for support. Get involved in your community. Find your tribe!

#6 Do not let the autism diagnosis rob your family. Make special time for everyone – including yourself.

#7 There will be debates on whether you should use the word “autistic” or “person with autism”, to disclose or not disclose your child’s diagnosis. You choose what you feel is right for your family. These debates only cause division in the autism community, and there are other ways to use your time and energy for effectively.

#8 Last but certainly not least, advocate. Make your voice stronger. I guarantee you their little eyes are watching, and their little ears are listening.

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EPISODE 18:

Traveling with children of any age can be difficult at times, can we agree? Traveling with someone who has special needs can add additional challenges to the regular stresses of travel. So when you combine the two, traveling with a child who has special needs can seem like an impossible task. But, it isn’t impossible. It’s simply a new challenge where the rewards are worth well more than the effort.

 

Today we’re speaking with autism mom and special needs travel coach, Sarah Marshall. She helps those who dream about a perfect family vacation, but struggle with making that dream come true because of the stressful reality of their child’s unique situation. Sarah takes her first-hand experience and professional expertise to find families the unique supports and accommodations to make their vacations a time to heal from stress so they can focus on making lifetime memories.

 

CONCLUSION

For our loved ones on the autism spectrum, traveling with unfamiliar routines and encountering stressful situations can be really hard, but you can show them that traveling can be a great adventure. Some helpful tips to consider may be:

  1. Consider the “musts” when you travel. Is there a specific food, toy, or routine that your child MUST have.
  2. Use social stories before you travel to help them prepare. Even finding YouTube videos on where you’re going can help.
  3. Prepare activity kits
  4. Bring an emergency bag and medical information
  5. And slow down, incorporate “breaks” for the whole family when traveling. It will help them and you to enjoy the moment.

 

Thanks for listening and being a part of My Autism Tribe. I’ll see you next week!

 

Sarah Marshall info

https://www.facebook.com/travelablevacations/

Phone: 630-445-1144

Scheduler: calendly.com/travelablevacations

Email:info@travelablevacations.com

 

ANOTHER RESOURCE:

www.autismtravel.com

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May 14, 2019

Autism & Employment

EPISODE 17: 

With Autism & Disability Self-Advocate Ryan Litchfield: Educational, Personal, and Professional Experiences in Working with the Autism and Gerontological Communities

 

INTRO:

 

For people with autism, it can be tough to find regular, paid employment. Times are changing for the better, however, there is much work to be done for advancement.

 

Only until fairly recently have Transition-to-Adult Programs been established, and they are in infancy. Some adults with autism have no intellectual disability, but are coping with severe anxiety, and others may have amazing technical skills but experience sensory challenges.

 

Schools are mandated to provide appropriate transition programs for autistic students, but not all schools are ready or able to do so, and adults services vary by location.

 

On today’s episode, we’re speaking with Ryan Litchfield; an autism and disability self-advocate with educational, personal, and professional experiences in working with the autism and gerontological communities. He has over 7 years of public speaking on disability and health advocacy across many communities within central Massachusetts, and is passionate in helping individuals with autism to work on and pursue their personal and professional goals.

 

CONCLUSION:

 

One of the first big corporations to recruit individuals with autism was Microsoft which started its “Inclusive Hiring for People with Disabilities” program three years ago in the US. Each candidate hired by Microsoft has access to a third-party job coach who helps them transition into the workforce and answers any questions they may have. Their mission is to empower everyone in the organization, and to create a diverse workforce.

 

If you are an employer, here are some tips:

  • Check whether your job description is relevant to the job
  • For application forms, it’s not always obvious what information the applicant needs to provide on the application form. It’s important to provide clear guidance on this and to make sure the form includes a space for applicants to highlight any help or adjustments they want at an interview
  • During the interview stage, make sure that the questions you ask are clear and unambiguous.

If you’d like additional information, please feel free to reach out to My Autism Tribe, and if you’d like to hear firsthand from someone’s experiences, reach out to Ryan at www.ryansvoice.blog .

 

Thanks so much for listening to My Autism Tribe, and I’ll see you next week!

 

 

 

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