Kids & Family

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

Episodes

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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