#133: Empowering Parents: Parent Led Therapy for Children with Autism

Parents taking charge is really important. You are your child’s lifelong advocate, and you can be their best teacher. Empowering parents to become the captain of the ship is something I talk about a lot in my book and my online courses.  So whether you are a parent or professional, this information is so crucial to helping parents.

I tell you about three parents and how they took charge and made massive gains and impacts on their child’s lives. Each of these mothers were in unique situations with children of varying abilities or delays, but all of them implemented my programs and dug into the resources to really help their child.

Many parents and professionals think that parents shouldn’t have to be therapists. They have a variety of reasons: they are busy, they have a lot going on, they should get to keep family time separate from therapy. As a parent AND professional, I get it. I really do, but the thing is that as the parent we are in the best position to truly help our kids. We will be with them forever, and we have the ability to give them more time to work on their skills than what they would qualify for or be able to receive in a professional setting.

I urge you to read my new book, Turn Autism Around: An Action Guide for Parents of Young Children with Early Signs of Autism. In my book, I talk about The four steps and I provide all the free resources online. I give you all the information and materials you need to become the captain of the ship, anyone can do it.

If you have read my book, I’d love your feedback so that I can better help others and even use you as motivation for other parents to take charge! Click here to fill out my book survey.

YOU’LL LEARN

  • Why am I advocating for parents to take charge?
  • Stories of parents taking charge.
  • Why is parent-led therapy important?
  • Parent resources in my book Turn Autism Around.
Want to get started on the right path and start making a difference for your child or client with autism?
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Transcript for Podcast Episode: 133

Empowering Parents: Parent Led Therapy for Children with Autism

Hosted by: Dr. Mary Barbera

You're listening to the turn autism around podcast, episode number 133. This week, I'm doing another solo show about parent led therapy. In my new book, I talk a lot about parents becoming the captain of the ship. So whether you're a parent or you're a professional, I think you're going to enjoy this episode.

Parents Need to Become the Captain of the Ship:

In the spring of 2021, when my turn autism around book came out, I did a lot of TV, radio and podcasts interviews. And you can check out some of the interviews by going to Mary barbera.com and scrolling down to the "featured in" section on the home page. And you can click on the various icons to see these TV appearances, and you can check out the article in Forbes.

Bunch of other places where I was highlighted, but in the TV appearances, which were only about four or five minutes in length, my main message was. Parents need to be taught how to detect and treat the earliest signs of autism, like speech and social delays, behavioral issues, and self-care deficits. And we need to empower parents to detect and to treat these early signs of autism as soon as possible.

Parents need to become the captain of the ship and professionals need to help them get there. And if your child is older and in school, your role in leading the team is still important. So today let's cover this important topic of parent led therapy.

Parents Taking Charge:

Last week I covered the four myths and truths about ABA and I featured, um, talked a little bit about Kelsey's story.

Now, let me tell you about three other parents who took charge and became the captain of the ship to help their own kids. Let's start with Abby.

Abby had a 20 month old son when she found my toddler course a few years ago. At the time she was living in the UK and she was on one wait list for a speech evaluation, which was 18 months long.

Some family members were living outside of the area where she lived. And one of her son's big problems was that he screamed every time anybody would visit, even his grandparents or aunts and uncles who should have been more familiar with him, but he just freaked out. So she. She also stated that in the beginning, when she found my toddler course, he didn't talk.

He didn't say anything functionally, but he did like letters and numbers and lining things up. Um, the ability to read and identify letters before you. Functionally talk is called HyperLexia, and I've done a video blog on that and we can link them in the show notes. Abby made really great gains with her son when she took my toddler course and, uh, she paired up.

She desensitized the people in her lives through pictures and zoom meetings and graduated. A re-introduction of these people in their lives. She got her son to talk functionally to make requests, to label things, to play with his older brother, and really turned things around. After taking the toddler course, she moved on to the verbal behavior bundles.

She watched all of those modules as well. And, uh, She believes in her heart that she avoided the diagnosis and she turned things around and she even took him off the 18 month Wait list for speech. Um, another person who took charge was Michelle and her daughter Elaina is featured in chapter eight of my new book.

And Michelle is also featured in podcast number 78, Marbarbera.com forward slash 78. We'll link it in the show notes as well. Um, Michelle found my course shortly after, um, her daughter's diagnosis at the age of two, uh, her daughter just had a few pop-out words. She was throwing tantrums, scratching herself to the point of bleeding, uh, throwing herself on the ground.

And right after the diagnosis, the world shut down because of COVID and Michelle was left home with her two year old and a newborn baby. And, um, wasn't working outside the home. Didn't leave the home for, um, a few months. And during that time she made all kinds of gains with Elaina, including a language sample done the day she joined the course and, uh, Elaina had two words in one hour.

And then 33 days later, when she did her followup from completing the course, she completed it very quickly. Um, she did another one hour sample and instead of getting two words like. Um, at the beginning of the course, Alaina said 180 words, including two and three word phrases, use contractions and plurals and, um, all kinds of language gains that really came quite naturally with, um, mom just doing the course, not receiving any services, not even zoom services.

Um, she made really nice gains and that was okay. A year and a half ago now. So Elena is now over three years of age. She takes ballet classes. She has no self-injurious behavior. She's doing extremely well. And after the world did open back up, she did get her in an ABA school placement as well.

And then let's talk about an older child, Anna, um, Anna's son, Nick was eight years old. When she found my first online course and, um, Nick was considered essentially non-verbal and was not talking had, uh, uh, a few word approximations, but was being taught how to use a device. Um, and he also, um, had really significant. What Anna found out from taking the course is Nick had a lot of conditional discrimination errors.

So if you would put out mommy versus daddy on the table, pictures of mommy and daddy, um, he couldn't even touch mommy versus daddy. Um, he couldn't label mommy versus daddy. He was having a severe errors with that, but. Anna joined to the course, uh, after he had spent his whole life from the age of three, until he was eight in, um, world-renowned ABA programs, schools, he had doctoral level BCBAs and SLPs working with him, but it was very much like, um, Anna sent Nick to school and they taught him what they taught him.

And he didn't learn much because of these severe conditional discrimination errors, and not, not any focus on vocal language for years. So when Anna purchased the course as a birthday present for herself, um, she learned how to teach NEC hundred supports and get his articulation better and teach him. Teach him to learn, teach him how to discriminate between things like mommy and daddy. Um, among, uh, many, many other skills he learned. She did have to switch schools a few times and she commented on Facebook that, um, she felt empowered during COVID because she knew how to teach her son. She became his advocate for life and his best teacher.

And, um, She all of these three women, Abby, Michelle and Anna all became the captain of the ship for life. Um, I used to hear things when I was going, uh, one on when doing my one-on-one work. Um, I used to hear things. Parents would say such as, I just want to be the parent. I just want to have normal family fun time.

One leaves therapy to the professionals. And I've also heard professionals say things like parents shouldn't have to be therapists for their kids. They have too much going on. They're too stressed. They need a break when their child is in therapy. And, um, I understand, I understand. The parent's point of view and the professional's point of view as being in the autism field, as both a parent and professional for many, many years, over two decades, I do understand both sediments and I realized that not every parent will.

Be able to dive in like Abby, Michelle and Anna did and have the natural know-how how to lead the team, but anyone can learn. And we as professionals must meet the child and parent where they're at. And I believe that empowering parents is really the best way to go. Parents are going to be there forever and parents are highly motivated and.

Why is it important?

If COVID taught us anything, it taught us that parents need to be involved. Um, even before the pandemic hit, parents were waiting in long lines for evaluations for their young children. Um, some of these long lines lasted nine months to two years. In many cases, just for that initial evaluation, there were also waiting lines as documented.

Abby for speech therapy and occupation, patient therapy, as well as ABA, the pandemic made the weighting worse and highlighted the need for parents to lead. I recently did a podcast with Dr. Katherine Lewis. And we can link that in the show notes as a great episode, she is a, a very well-known autism researcher who has experienced since 1969.

And she's still working in the research field of autism. She's a wealth of information, but she did point out, we talked a lot about the pandemic and how suddenly kids of all ages were at home kids without a diagnosis or in the middle of getting evaluated. Were. Just kind of fell through the cracks. And when kids are very young, we don't know if these delays are going to turn out to be autism, but detecting and reversing speech delays and behavioral issues.

As soon as they start and preventing more delays is key. I did a podcast about the important work of Dr. AMI clin, and he, I mentioned him in my book as well, but he states that the average. Uh, amount of time between a parent's first concern that there might be autism or delay. Until the time of diagnosis is, um, three and a half years.So if a child first starts showing signs at one or one and a half or two, and they are not, uh, they do not get diagnosed or receive any treatment for three or four or five years after that, that is a long time where critical, uh, advances can be made.

Things can be turned around. Parents of older kids, um, were, and still struggling with the pandemic restrictions and many have been struggling for years

And while my book and approach, um, really address the needs of kids who developmentally are between the ages of one to five years of age, not just chronologically. So if you have a child like Nick, who was eight and now he's. 12 or 13, or you have a son like my son, Lucas, who's 25 years of age, but they're still functioning in some areas as a one to five-year-old developmental level.

Then these podcasts and my book, um, my courses can certainly help.

So if you have read my book or taken my online courses or have listened to any of my previous podcasts, you'll know that I think one of the key factors that will determine how a child will do is, is basically how well the parents are trained and encouraged to become the captain of the ship, to teach them how to do the four steps of the turn autism around approach and empower parents to lead the team.

Now more than ever. It's important to look at your child or the family unit you're working with and make sure the therapy, all of that therapy is child-friendly positive and that you're seeing progress in all environments.

Who Can Start a Program and What is Involved?

You can, anyone can, whether you're a parent or professional or grandparent, anyone who is motivated can learn how to start or revamp a child or clients that are B program.

There are four steps of the turn autism around approach. And I did individual podcasts on each of these steps, but here's a quick summary. Assessment. We want to take a big view of the assessment. If we're looking at an eight year old or we're looking at a 20 month old, we want to step back. Does the child have a diagnosis?

What are the delays? What are the typical milestones? If they're young, where, what are, what are they not meeting? Um, Does the child have any current therapy or school or are they engaged for many hours a day? Um, unfortunately the therapy that's given for many young children, even with a diagnosis of autism, when they're very young is like one to three hours of early intervention therapy per week.

And that is not enough for any child with significant delays, especially if the parents are not trained well. In my book. And of course, as we talk about the one-page assessment, the self care checklist, the making a plan, treatment, intervention, and easy data. Um, so step number one is all about assessment and you can get all of these forms for free at turnautismaround.com.

These are the book resources. So the first step is assessment. The second step is making a plan. You use that one-page assessment, you use the language sample, any other assessments that you have already done are great to use as well. And then you need to really work with the parent and professional to make sure that the goals are in place are appropriate.

Um, I talk a lot in chapter five in my book about what materials to gather, which is part of the book resources. We have a materials checklist. The one-page planning form from my book, um, is really good in terms of, we have both a blank planning form as well as a sample planning form where we can take that one page assessment and we can really quickly

Like 10 minutes, 10 minutes for the assessment, 10 minutes to do the plan, pick out their strengths, their needs, and make a plan to get them to the next level. The third step of the turn autism around approaches to teach or intervene. This will be based on the plan we want to. Really have the teaching and interventions focus on eight positives to every negative.

We want to pair up the table and the materials we want to plan to use, um, and use data that's easy and work with professionals who understand the third to turn autism around approach and we'll collaborate with them. I did do two pretty recent podcasts. One with Kelsey and Amy Evans. That's a parent professional collaboration podcast.

I also did one a couple months ago with Rhea who was a parent and Kristin who's the BCBA. So you could listen to those. And the fourth and final step of the turn autism around approach that parents and professionals should learn and use is evaluation.

We want to use easy data, my calendar system, uh, we want to use ABC data rate data, and we also want to use data on things that really are.

Um, motivate parents and professionals. How many words did we increase by?Um, there we go from two words to 180 words and phrases that's highly motivating, um, to the parents and professionals on the child's team. And it's a big win for the child.

So, if you have finished my book and you want to take a survey for a chance to win a prize, go to Mary barbera.com forward slash book survey.

I would love to read your feedback. I do look at all the feedback from the book and we can also use your feedback to help others, to motivate others, to, to get involved, to focus on. Parents becoming the captain of the ship. If you're professional, helping parents to become motivated, to learn, motivated, to teach and motivated to advocate for their child.

So, um, My podcast goals are not just for the kids, but for parents and professionals to be less stressed and lead happier lives. And I do believe that learning more will help you feel more motivated, more empowered, and will help. Your own child or the children that you work with make the most progress.

And I think that will lead to a better life for all of us. So I hope you liked this short, um, podcast episode on parent led therapy. I will be back here next week. Same time, same place. Hope to see you or talk to them.