Kids & Family

Educating, Supporting and Empowering the Autism Community.

Episodes

March 31, 2020

Adjusting to a New Normal

EPISODE 57: ADJUSTING TO A NEW NORMAL

 

INTRO:

Hi there! Welcome to this week’s My Autism Tribe podcast. To be honest, I’m struggling to remember what day it is, and who I was before this COVID19 quarantine existed. I’m almost positive that I’m a day late in posting this podcast, and 100% sure that I have a pile of clean clothes still in the dryer from 3 days ago that I have yet to fold and put away. The struggle is so real. I hope everyone out there is adulting at least a little better than me right now. Stay tuned as I share how we’re trying to find our new normal.

And if you have a couple of minutes and aren’t watching the latest episode of Tiger King, or Frozen 2 for the 100th time, might you give our podcast a rating and review wherever you listen to podcasts? We could sure use some cheering up right about now. I kid…no, but seriously. It would be greatly appreciated.

SEGMENT:

It has been a little over two weeks since I’ve been working 100% from home, and since my son has been homeschooled. And I’m just being real…I’ve been struggling with feelings of anxiety as a single mama in keeping it all together. The first week was SUPER tough, for both my son and myself. We picked up a packet of homework from my son’s school, and I pulled all my files from my office so I could migrate under my home’s roof. I thought at the time that this wouldn’t be so bad, and it’s not because it could be a lot worse…I know that…but the anxiety starts settling in when I begin thinking about the unknown timeline. How long will we be in quarantine? How much will my son regress? How in the world am I going to work at full capacity, while also homeschooling my son, while also maintaining some of his therapy sessions, and while also making sure that my son doesn’t feel neglected because I’m not able to spend the amount of time that I would like with him? So many questions!

Other parents and I have been having conversations about this, and there’s one common theme. We all feel like we’re failing…every single day. Even though this temporarily makes me feel better about my current situation, it also makes me sad and frustrated. Now, more than ever, we parents are being tasked we rise above all doubt in our parenting efforts. We’re taking on roles that we don’t have degrees or certifications for. We’re wearing multiple hats all day, changing them up as needed to fill the title that we’ve been given in any given hour. We’re more than parents. We’re teachers, therapists, playmates. I woke up this morning and again felt anxious about fulfilling my roles today, and I heard these words. “Susan, the more you feel anxious, the more you feel stressed, the more you feel in despair, the less you will be able to give.” I felt a calmness come over me. I’ve been able to approach today with a new set of lenses. Maybe this is just me making the adjustment to my new sense of normal. So, I made a list of things that I miss…not because I want to dwell on the things that I can’t have right now, but to give me something to look forward to.

  1. Taking my son to the park. There are only so many days that I feel like these walls will be standing. That at any moment, my son will morph full-on into a flying squirrel. If not him, most undoubtedly me. Our space is beginning to feel extremely small.
  2. Seeing the faces of other family members…actually their faces…not on FaceTime…not on Zoom…but being able to touch their sweet faces and give them kisses.
  3. Hanging out with friends. Meeting up with them for dinner at our favorite restaurants, and getting my son together with his friends for play dates.
  4. Going to the movies. I’m a big fan of Netflix, and Hulu, and Disney Plus…but there’s something that I’m craving about going to the big screen and catching the latest flick.
  5. Hanging out at the pool. Well, we’re still in our early spring in the U.S. so the pools aren’t open yet, but I sure do hope that when they do open, we will be out of quarantine. Call me crazy, but I love the smell of chlorine paired with fresh cut grass. Surely, I’m not the only one.
  6. Going to the zoo and the aquarium. If my son could move and set up residence at either of these two places he would, and even if my home will feel like a zoo in another few weeks, it will hardly be the same. He’s already making the itinerary of what exhibits he wants to see first. To see his smile when we get to go back – it will make all of this crazy stuff worth it.

I understand that most of these are first world problems. There are so many people in our world that will never get to experience these. Which makes me believe that we are truly “resetting our priorities”. Don’t you think that maybe we took so much for granted? We spent so much time behind the windshield going to work, taking our children to therapy, and then back to work, and then to other appointments…maybe we just needed to slow down and truly learn to appreciate all that we have. We don’t NEED many things to live, and we truly don’t need many things to be happy. My son is a perfect example for me. He struggles sometimes, and yet he continues to have the most gorgeous smile…one that can light up any room.

So…I’ll continue to do my best and give myself grace when I feel like I’ve failed. I’ve learned that I’m not a very good Kindergarten teacher. I’m not the best therapist for my son, but you know what? I’m a mom, who loves her son so much, and at the very least, I will make sure that my son is happy, healthy, and feels love every single day. That, I feel, is what I can control the most. The rest…well…this time will pass and as cliché as it is, it will make us stronger. I truly believe that.

Thanks so much for being a part of My Autism Tribe. Hang in there, and I’ll see you next week!

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EPISODE 56: Helping Families with Special Needs During the COVID-19 Crisis

With Amy Kelly

 

INTRO:

As we all are very much aware, COVID-19 is affecting everyone’s lives around the world. COVID-19 is a new strain that was discovered in 2019, and has not been previously identified in humans. There is so much information out there; some is factual and some is misleading. This leaves us with a lot of questions, but I believe it’s important to speak on how it might be affecting the autism community specifically. How do we help families who live with autism and disabilities? How do we help them cope with everything during this trying time? How do we explain this current situation to our children? Stay tuned to listen to today’s guest as she offers some insightful information that may benefit you and your family.

SEGMENT:

Today’s guest is Amy Kelly. She’s the mother to Danny, Annie, and Ryan. Her daughter Annie is diagnosed with moderate to severe autism, verbal apraxia, intellectual and developmental disabilities, and general anxiety disorder. Amy is the National Director of Family Engagement for Devereaux Advanced Behavioral Health, one of the nation’s oldest and largest nonprofit providers of behavioral healthcare, and she also serves as a family representative on several special-needs boards in the community, locally and nationally. In addition to all of this, she participates with other patients and families in efforts supported by the American Board of Pediatrics Foundation to address children with special needs and the importance of quality care. She’s quite the busy lady, and sounds like she’s gonna to be able to share some really good stuff with us. Let’s welcome Amy!

CONCLUSION:

Please know that I’m thinking about everyone out there. I’m lifting you up, sending virtual hugs, high-fives, fist bumps…you name it. Now more than ever we have to be in this together. It’s an emotional time for everyone, and I do hope that if you need someone to listen that you please reach out. Send me a message on any of our social platforms, send me an email. I want to make sure that all platforms are open and available to you. If I can’t personally assist you, I’ll make sure that I find someone that can. You’re not alone. You never have been, nor will you ever be. Thanks so much for being a part of My Autism Tribe. Hang in there, and I’ll see you next week!

 

ADDITIONAL INFORMATION:

Facebook – https://www.facebook.com/DevCareers

LinkedIn – https://www.linkedin.com/company/devereux/

Twitter – https://twitter.com/DevereuxCEO

YouTube – https://www.youtube.com/channel/UCrF_lQGwNvQHuqQ7xcSE0Gg

 

About Devereux Advanced Behavioral Health

https://www.devereux.org/site/SPageServer/?pagename=helping_families

Devereux Advanced Behavioral Health is one of the largest and most advanced behavioral healthcare organizations in the country. They have a unique model that connects the latest scientific and medical advancements to practical, effective interventions in the treatment of behavioral health.

They were founded in 1912 by one of the first pioneers in the field, Helena Devereux. Today, they are a national nonprofit partner for individuals, families, schools and communities, serving many of the most vulnerable members of our society in areas of autism, intellectual and developmental disabilities, specialty mental health, and child welfare.

Informed by the latest advancements in science and medicine, they combine evidence-based interventions with compassionate family engagement to help change lives. Their programs are offered in hospital and residential, community, and school-based settings.

They include:

  • Comprehensive Assessment, Diagnostics and Measurement to support data-driven care
  • Evidence-based Treatment & Special Education
  • Transition and Independent Life Services
  • Family Education and Professional Training
  • Research and Innovation to advance the field
  • Advocacy, Public Awareness and Prevention
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EPISODE 55: PIXAR’S BOBBY RUBIO SHARES HIS AUTISM DAD STORY IN “FLOAT”

 

INTRO:

Hi, everyone! Welcome to this week’s episode with a very special guest, Bobby Rubio, an autism dad and a story artist at Pixar. You may have seen his personal and professional story in thousands of news feeds around the world. You don’t want to miss this one! Also, if you’re enjoying being a part of My Autism Tribe, and listening to our podcast, we would love for you to take a moment to rate and review us wherever you listen to podcasts, and of course, share us with a friend or your organization. That’s how we make our voices stronger. We’re also on all social platforms, so give us a follow and send us a message about topics that you would like to hear about. It’s important to us that we’re providing you with information and messages that are near and dear to your heart. Thanks for listening!

 

SEGMENT:

When parents first receive an autism diagnosis, and even in moments afterwards, they may feel like they’re drowning…and they’re not alone. Many of us may feel like this, but our guest today has created a special animation that touches every parent, and sheds a light on the positivity that can be found in dark times.

Bobby Rubio made his directorial debut with Pixar’s animated short “Float” on Disney Plus in November and it has captured our hearts and told many of our stories. Bobby has worked at Pixar as a story artist since 2012, contributing to “Inside Out”, “Incredibles 2”, and “Brave”, but “Float” broke through barriers as not only a short focused on neurodiversity, but also Pixar’s first work to feature a Filipino American animated character. The short tells the story of a father that discovers his son is different than others, and rather have the outside world view him as being different, the father keeps his son out of sight. Bobby’s own son, who was diagnosed with autism, didn’t handle the news of his son’s diagnosis well…again…just like many of us, and his testimony is so heart-felt and inspiring. Please welcome, my special guest today, Bobby Rubio.

 

CONCLUSION:

The story behind “Float” is not only a story that autism parents can relate to, but about some of the struggles that every parent has with their children. We need to love and celebrate people from all walks of life. Being unique or different isn’t bad, but beautiful. I truly do believe that, and it’s my hope that Bobby’s story touched you in the way that it touched me. The way that it inspired me. It’s ok to step outside of your comfort zone, and embrace the unknown. Thanks so much for joining me today, for being a part of My Autism Tribe, and for being an advocate for yourself and others. I’ll see you next week!

 

ADDITIONAL INFORMATION FOR BOBBY:

Instagram: https://www.instagram.com/bobbyrubio/

Facebook: https://www.facebook.com/barrypresh

Twitter: https://twitter.com/Bobby_Rubio

Disney Plus: https://www.disneyplus.com/

“Float” on Disney Plus: https://www.disneyplus.com/movies/float/7dIYGyfvHWEJ

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EPISODE 54: Financial Planning for Your Special Needs Child

With Nick Wallace

 

INTRO:

Raising a child with special needs can be one of life’s most fulfilling experiences, but it can also be one of the most costly. According to Autism Speaks, raising a child with autism costs on average $60,000 a year, but let’s face it…it costs a lot more than that for a lot of us depending on the severity and insurance coverage. It can be scary looking at the financial numbers, and even scarier when you wonder what would happen if something happened to you. Long-term financial planning is daunting, but no matter your child’s age, it’s important for you to start as early as possible.

 

Today, I’m speaking with Nick Wallace, a financial planner that focuses on planning for families in the special-needs community. His passion for this type of planning is inspired by the feeling of relief that he experienced after working through a game plan for his brother’s future, who has special needs. Nick is going to share some insights from the daily conversations that he has with families and planning for their loved ones.

 

CONCLUSION:

The process for financial planning for a special-needs loved one takes time, but you can start by laying out a timeline for what needs to be done.

Plan early, and revise as needed. It’s not easy or straightforward, and what makes sense for one family may not make sense for another. Get help. It’s doable.

Thanks so much for being a part of My Autism Tribe, and I’ll see ya next week!

 

ADDITIONAL INFORMATION

 

TOOLS THAT ARE OFTEN USED:

  • Various types of special needs trusts (with the help of a special needs attorney)
  • ABLE accounts (when appropriate if allowed by the state)
  • Various types of life insurance to answer the tomorrow questions or the 40 years from now questions
  • Various types of investments for retirement and estate planning

 

QUESTIONS TO ASK YOUR FINANCIAL PLANNER:

  • Did we take into consideration my loved one’s special needs when we established my insurance and investment game plan?
  • Do I have enough life insurance to protect the care and income that I provide my family if something were to happen to me tomorrow? How did we arrive at this number?
  • What steps can I take to make sure that I am on track for retirement? How did we come up with these numbers?
  • Are my beneficiary designations on my life insurance and investment accounts set correctly so that my loved one with special needs’ benefits will not be in jeopardy?
  • What is the long-term game plan on leaving behind money for my loved one if I live a long life of caring for them, but pass away before they do?
  • A solid financial plan has answers for the “what-ifs” that life could throw at us tomorrow or 60 years from now. Nick recommends meeting with a financial advisor at least yearly to review plans and make changes if necessary.

 

NICK WALLACE CONTACT INFORMATION:

 

Facebook - @nickwallacefinance

Website – www.nickwallace.nm.com

Email – nick.wallace@nm.com

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