Early intervention and detection of autism [Podcast]

This week on The Preschool Podcast, we welcome Chantal Lavergne, Founder of Fun Sensory Play and Blogger. Chantal shares the story of her daughter’s autism diagnosis, the importance of early intervention, and how it inspired her to start her business.

In 2017, Chantal became pregnant with her daughter, which was the best thing that ever happened to her as she believed she could not get pregnant. All her childhood growing up she worked with children, it was all she wanted to do. Her goal was to become a teacher but like so many, it did not end up that way.

Chantal’s daughter was a high-needs baby and very sensitive. When you are a new parent, you do not know what is normal and what is not. But as her daughter grew up, Chantal saw that some things were not normal or that she needed help more and Chantal started to think that she had sensory needs and autism was possibly the cause of this.

Initially, Chantal had very little support. In the beginning, the person that should be supporting you is your doctor. Her doctor is great but there is a misconception out there. Chantal brought up autism and her doctor did not believe it. Luckily, he referred them for developmental delays and they were able to get a diagnosis for autism at 23 months.

Her daughter started walking at 18 months and never crawled. She started speaking at 14 months old and at 18 months stopped completely. When that happened, Chantal knew that was a sign of regression. She was hypersensitive to so many things and played by herself a lot. Everything was a trigger for her and they never knew when she would go off.

I told my partner, that from now on, our life will be dedicated to her, I will do everything I need to do, because I knew early intervention is so important. Getting referred to a specialist as soon as possible is crucial”

Chantal

Often doctors tell parents to wait and see before recommending specialists. However, this waiting is causing children to miss out on early intervention. If you only put your children on a waitlist when they are three, you are missing out on critical support.

Parents being in denial is also a big problem. It is so hard to hear that your child has autism. There is no cure, it is not going to go away and you do not know what their future will look like. It is challenging, it is stressful, it is expensive, and it is hard on relationships. The sooner you start the process, the sooner you can get support.

As time went on, her daughter went from a child who was in her own world to a child who wanted to interact all the time. However, she still had a hard time with gross motor skills and Chantal had seen some stickers to use on the floor to assist online. However, they were super expensive, so Chantal decided to create her own to make them affordable. She was able to make it happen and started a business through this! She now has a Facebook group and has self-published some children’s books, all inspired by her daughter.

If I can use my voice and what I have to help other people, I am all in. I will do whatever it takes to help another child or another parent.

Chantal

Chantal’s recommended resource

Teach Me to Talk Podcast

Podcast episode transcript

Chantal LAVERGNE:

It is the hardest thing to be told that your child has autism because it’s not something that you can cure; it’s not something that’s going to go away; and you have no clue what their future is going to look like. So, all this to say that it is crucial because the sooner your child has a diagnosis or the sooner you start the process, the sooner you can get support.

Ron SPREEUWENBERG: 

Chantal, welcome to the Preschool Podcast!

LAVERGNE:

Thank you so much for having me!

SPREEUWENBERG: 

We are delighted to have with us today is Chantal Lavergne. She is a blogger and the founder of Fun Sensory Play. We’re going to chat with Chantal today a bit about early intervention and detection of autism. Before we do that, let’s learn a little bit about you, Chantal and your background and what brings us to this conversation here today.

LAVERGNE:

Well, my daughter is pretty much bringing me here today. So, a little bit of a background is that in 2017 I got pregnant, which was, to me, to us, a miracle pregnancy because at the age of 16, I was told that I would probably not have any kids because I had very severe PCOS [polycystic ovary syndrome]. And at that time when I was 16, the only thing I wanted to do was work with kids. And I saw myself having a family of four that’s all I did. Like, all my childhood growing up as a teenager, I worked in summer camps, I worked in daycares, I worked and before and after school programs. And I was going to be a teacher. That was my goal.

But that kind of changed a bit because when they announced that I probably couldn’t be pregnant, it’s like a dream that was shattered a little bit. I still had some hope, but it sent me a little bit in a depression, looking back. And then I wasn’t sure if I wanted to be a teacher. So anyways, I tried other things in life and it brought me to awesome experiences.

And then in 2017, by surprise, I got pregnant and it was the best thing ever. We had a beautiful, healthy baby, but she was super sensitive. I was told from an early age that we had what we call a “high needs” baby. And car drives were awful. She would scream, like, to the point of sobbing, like she would stop breathing. Going places anywhere was awful. We were so stressed out. We didn’t know… when you’re a new parent, you don’t really know what’s normal and what’s not. But we were just riding the wave.

And then as she grew up, we basically saw that maybe some things weren’t normal or that she needed help. And that’s when I started to think that maybe she had sensory needs and that there was a possibility that autism was possibly the cause of all this. Anyways, fast forward to now, I mean, she brought me here four years later, basically through the experiences that we’ve had together. And I don’t want to cry, but I think that, even if it’s the hardest thing I’ve ever done in my life, she’s bringing me back to where I belong. And that’s why I’m here.

SPREEUWENBERG: 

Wow, thank you for sharing that story. I have no doubt there’s listeners here today that can empathize with that and sympathize with that experience because there’s lots of folks out there that have gone through something similar. And to your point, as a parent, a new parent, you don’t know what’s normal and what may be a little abnormal.

So, maybe we can spend a little bit of time talking about that experience and that journey. You mentioned some of the early experiences and signs, I guess, through that journey to a diagnosis. What help or support did you have? Who are folks that helped you through that experience? And what were some of the more challenging aspects of trying to get the necessary supports for you and your family?

LAVERGNE:

I will be very bluntly honest, I had very little support because at the forefront, the person that should be supporting you through this is your doctor. So, we had a family doctor – love him to pieces, but there’s a misconception out there and is that I brought the fact to him that she was hitting a lot of different markers for autism.

So, many of them – I can share a little bit – is that she was she started walking at 18 months. She never crawled. She started saying “mama” at I believe it was 14 months old or 16 months old. And then in 18 months, she stopped completely. And when that happened, I knew that that was a sign of regression. She was playing by herself a lot. She was hypersensitive to so many things.

As an example, we couldn’t whip a garbage bag. You know how you whip a garbage bag to open it up? We couldn’t do that without her losing her mind. I couldn’t even cut a piece of foil without her screaming. You can just imagine the kind of life we were living because everything was a trigger for her and we never knew when she’d go off. And we were trying to navigate this and understand and she was delayed in some of the milestones.

So anyways, all this to say that when I brought this to my doctor, he didn’t believe that she had autism. But by, I don’t know, the love of God, he referred us to a pediatrician for development delays. And she is also one of the assigned person from the CHEO [Childrens Hospital of Eastern Ontario] Hub here. So, here in Ottawa, we have the CHEO hospital. They take care of the autism diagnosis. And she is part of that team. And again, luckily for us, that wait list was only three months.

But when I walked into her office, I mean, I did everything by myself. And my doctor would tell you this, as well, to this day, because he has told me this, as well. He said, “You have done everything by yourself,” because he missed out because he thought that because she looked at us that she didn’t have autism. He thought that because she responded to her name, that she didn’t have autism.

And it’s very sad because this is why I’m here today, is to talk about early intervention. And early intervention is everything, not only for kids with autism, for all kids. But for kids with autism, it’s so important. And we got the diagnosis, she was 23 months [years old]. And when she told me in the office, because I got there and I had the speech therapy report; I had her OTD [occupational therapy development] report; I had a report from the daycare; I had everything.

And she sat down and she looked at me and she said, “What are your concerns?” And I said, “I believe that my child has autism.” But I didn’t know that my doctor didn’t refer me for autism, I had no idea. She goes through the whole meeting and then at the end she’s like, “I can confirm she really has all the markers. She definitely has autism.” And then she looked at me and she said, “I just want you to know that if I look scattered, it’s because I wasn’t prepared for this because your doctor never mentioned autism on his referral.”

And I was mad, I was sad. But at the same time, she said, “At the same time, you’re lucky. Because of this and because it’s me, I’m able to give you a diagnosis and you don’t have to wait 14, 15, 18 months.” That’s pretty crazy right now, the waitlist. So, we took that, we left. And I said to my better half, we were crying home, and I just told him, I said, “From now on, our life is going to be dedicated to her. And I will do whatever I need to do for the next two, three years of her life.” Because I knew I had done enough research to know that this was the time for her. She was only two [years old].

And so to answer your question, I mean, I was lucky that I was able to get on the public speech therapy program pretty fast. I was also lucky to be put on the list for occupational therapy here at our hospital. And they have a mandate of seeing kids that are close to 18 months as soon as possible. They kind of skipped the list in a way because they know that 18 to 24 months, it’s the time to grab them because this is where we could have the biggest impact.

And luckily, she was 18 months when I put her on the list myself. My doctor didn’t even know that the service existed. This is how bad it is. And so we have the support of those people. But oftentimes, parents are left to scramble a little bit by themselves. And if you’re not a parent that’s a go-getter, if you’re a parent that’s going to listen to your doctor… because my husband – I call him my husband because he’s basically my husband – he would tell you that e told me that he would just follow the doctors. He said, like, “I didn’t know better. If it wasn’t for you, I would have followed the doctor’s recommendation to not worry and let’s wait. She looks at you and she responds your name. So, everything’s fine.” So, yeah, that’s the support that we got.

SPREEUWENBERG: 

Yeah, and I think that’s one of the challenges with a doctor, is they’re seen as a person of authority. So, oftentimes folks will take them at their word and not get a second opinion. But I guess my takeaway from your story is, as a parent, you have to trust your instincts. And it sounds like getting the referral to a specialist as early as possible, if you see any possible signs, and at least having that conversation and giving that information to somebody who’s a specialist is a critical part.

LAVERGNE:

Oh, it’s everything. To me, it’s everything. Because we got the diagnosis… so, our roadmap is, and this is why early intervention is so near and dear to my heart, because a lot of doctors, what they’re doing right now is, they’re basically, because the kid is only two… and I get it they might just have delays. But they tell the parents, “Let’s wait, we’ll wait. We’ll wait it out and we’ll see.” But the issue with this is that waiting right now is causing that child to miss out on early intervention.

And the waitlists are crazy right now. And COVID made it worse, to be fair, because now we’re seeing kids with speech issues that are not on the spectrum, but they need the service. You will see kids with development delays because they’ve been secluded, they don’t have the social skills. We will see some delays. So, that will only increase the waitlist in the end.

So, if you’re only putting your child on a waitlist when they’re three and they don’t get evaluated before they’re five or six, good luck in getting services because it takes so long. So many people are going for the private evaluation but they have to pay out of pocket. And not every parent can afford that. And now because everyone’s going to the private sector, there’s a waitlist there, too. Before there wasn’t really a waitlist, now there is – for most, anyways.

So, it is crucial to get those early referrals. It is crucial to move as soon as possible. And I have to say this, as a parent – and I’ve been told this at the daycare we were going to, we were getting some support from an organization in the area that help with the inclusion and they give services and support.

And they often told me that some parents are in complete denial. That’s also very sad. And it’s also frustrating as an educator, you’re seeing this. You see that the child has needs, they need help. But the parent is not willing to see it because it is hard. It is the hardest thing to be told that your child has autism because it’s not something that you can cure. It’s not something that’s going to go away.

And you have no clue what their future is going to look like. It is scary. It is expensive because you have to spend a lot of your own time helping your child. It is challenging; it is stressful; it is also hard on relationships because the stress level is pretty high. So, all this to say that it is crucial because the sooner your child has a diagnosis or the sooner you start the process, the sooner you can get support.

So, because our daughter got the diagnosis before [age] two, we were able to get this program, which is called Quick Start. That was the most amazing program ever. It changed our life. We were doing therapy every week and that really changed everything for us. It changed everything for her. She went from a child who was pretty much in her own world to a child who wanted to interact with us all the time.

And if we didn’t have the early diagnosis, we wouldn’t have access to Quick Start. And she probably wouldn’t be where she is today because I didn’t know, as a parent, what I needed to do. So yes, I’m just confirming what you said, that early referrals are so important. And just to go back to what you said, the doctors are important because we can’t really do… I mean, some people say that self-referrals are possible. But for us, we needed a doctor’s referral to get on that list. They’re crucial because if you can’t convince them to refer you, they won’t. So, if they tell you, “No, we’ll wait,” there’s not much you can do unless you go to the private sector. So, that’s sad, also.

SPREEUWENBERG: 

Yeah. And certainly our audience, many of whom are early-childhood educators, can appreciate the fact that that lost time in those early years is super critical. So, that makes a lot of sense. And I understand that your daughter has inspired you to start your own business. Tell us a little bit about that.

LAVERGNE:

So, it’s interesting in a way, the story itself, is that my daughter was struggling with gross motor skills. So, she wasn’t able to jump. She had issues even walking. She had a hard time with balance. And I had seen some stickers that you put on the floor. So, they call them, like, sensory details or sensory floor stickers. And I had looked into it, but they were super-expensive. And I thought, “Okay, there must be a better way.” Because I have my own business for the last ten years. So, I’m also an entrepreneur and I love creating stuff.

So, I went on a mission to try to design some sensory paths for my daughter so that I could help her jump in and run and walk on a line or whatever it may be and make them affordable. So, it happened and I was able to make it happen. And then I started selling them because I was like, “Well, if I needed them, there might be another parents that would need it as, well.” I never thought of schools and educators and early centers. But little did I know that they also needed it, as well.

So, that’s how it really started. And then I started a Facebook page for Sensory Play, just for fun, because that was her life. Everything about her life is sensory play. It really, really helped my daughter, is this therapy. I didn’t know as a parent, and even as a person who’s worked with kids – I guess I was young and I didn’t know much back then – but I didn’t realize that play was everything to a child and how much they learn and how play is actually therapy for some kids. And play is also good for adults, by the way. It’s very soothing when you play with kids and you drop your phone and you actually get involved in a play environment. It’s very relaxing.

So, all this to say that I grew an audience and then I started selling my products and I launched different things. I have a Facebook group, as well. And I also self-published some kids books. And it’s all inspired by my daughter. Everything is always inspired by her. And that’s why I keep saying, like, she’s bringing me back to where I belong.

And now, because we’ve seen so much success with my daughter… and I mean, we still have struggles and we still have a lot that we work on. But if I can use my voice and what I have to help other people… I always say, if I can help another child, then I’m all-in. I will do whatever it takes to help another child, another parent.

And yeah, so that’s basically the story behind my business. And it’s weird to say this because you’re saying “business”, but to me it’s, like, not a business. It’s so odd. It is, but at the same time, it’s part of me. It’s part of my life, it’s part of who I am. I don’t see it as a business. I see it more as an educational thing. But in the end, it is a business. But it is still strange to me because when people ask me, “What do you do?” And I’m like, “Well, I’m a mom and I have a blog.” And I don’t really know what to call myself because I am just out there trying to help and trying to inspire people to play, I think. I think that’s really my goal and also to push people for early intervention.

SPREEUWENBERG: 

Cool. Well, that’s actually very aligned to something I’m passionate about, I think, which the term I use is “social enterprise” because it’s an enterprise but yeah, it’s all about the social impact. Like, that’s the primary driver and certainly that’s something that resonates with us over at HiMama. So, it’s cool that you’re doing that. And that’s probably one of the reasons why we’re chatting here today, would be my guess.

And speaking of helping other children, other parents, as you mentioned, one of the ways to do that is potentially through the classroom because we’re hearing your perspective as a parent who’s gone through this experience. What message would you have for early-childhood educators out there who might be able to support parents like you through this type of experience?

LAVERGNE:

I have a few, if that’s okay. I’ve been in those shoes. I was only 20, I was very young. And I know how hard it is. I know how demanding that job… it is a very demanding job. And more so now, I think. And it’s the same for teachers. I really feel for teachers that are in junior-K and kindergarten because they’re dealing with all these kids that do not have a diagnosis but they can clearly see that they have issues.

And I just want them to know and to embrace the fact that they can change a child’s life forever. And I say this and I have shivers because if everyone had that conviction, if everyone got to work together as a team – and I think that’s my other message, is that as a parent, I am very invested. I am the parent, that’s all I do. This is all I do, this is my life. And this was part of our plan, was that I would invest myself in this to give her the best chance at a whatever normal life she can have, whatever that looks like, because I don’t think anyone has a normal life. But you know what I mean, just to be able to adapt to life.

And it’s important for educators to understand that a parent like me who is trying to work with you, who is trying to bring solutions and tell you specific things of, like, how my daughter could react or… We’re not trying to overstep, but we understand that these are crucial times. And I think that sometimes in our experience, that’s hard for people to understand. Even now at school, now she is transitioning to school. And it’s also hard because we feel like sometimes, unfortunately, the staff is not trained for this. They are not therapists and we get that.

But I think the education system needs to change a little bit because nowadays, I don’t know what the stats are, but ADHD is on the rise. And I don’t know if it’s one in five kids or one in three kids now, it’s high. And they don’t learn the same way. They don’t deal with things the same way. Autism is also on the rise for whatever reason. I’m not sure why, but it is.

And I think that the training that they get in college and university, I think they need to have some support there because I feel for them. Like, they get thrown in and they have to deal with all these kids. And some of them might be screamers, some are sensory sensitive, some are sensory seekers. You have to understand the child. Like, it’s a lot; it’s a lot to deal with. But every time that you play with a child, you can help them grow. You can help them bloom. And that is worth so much to that child and to that family.

SPREEUWENBERG: 

Awesome. Well, that’s certainly a great message to reinforce the value and importance of the work that early-childhood educators are doing every day. So, I appreciate you sharing that. And before we wrap up, first of all, development resources. So, any resources you can suggest to our listeners to check out related to this specific topic or children’s development generally?

LAVERGNE:

Well, for me, something that was very near and dear to my heart was speech development because I wanted my daughter to be able to communicate. So, I really took a dive into that world. And I found someone who is beyond amazing. She has a podcast, her name is Laura [Mize] and her podcast is called Teach Me To Talk [www.TeachMeToTalk.com]. But basically she has a chart. And she made this PDF chart where basically you understand the steps to speaking, to talking. And I even brought it to our own speech therapist, and I’m like, “This is amazing.” And she’s like, “Wow, I’ve never seen this.”

I’ve learned so much from that podcast. And I would listen to it on repeat in the car, in the bathtub, because it was so valuable. And I even bought her autism workbook, which was pretty expensive because it’s coming from the [United] States. But everything that she puts out there, it’s amazing. And it’s all through play, which is so amazing because, I mean, educators can do this any time because it’s play.

So, you just need to learn how to use that to help a child that might not be as advanced in speech. They don’t need to have autism specifically. They just have a delay in speech. And through play you can help them. And if you can see what stage they’re at – so, there’s different stages, they the imitates I forget all the stages.

But it was really interesting for me to see where my daughter was and all the steps that she needed to do before she would actually want to talk, because they need to understand that. Anyways, I’m sorry, I could go on and on about this. But that was really an amazing resource and it’s free. So, she’s on podcasts and she’s also on YouTube. She has a website and you can also buy books and stuff from her. But she is amazing. So, she’s a speech therapist, but amazing, amazing show. I can’t say enough about her.

SPREEUWENBERG: 

Awesome, that sounds like a really great resource with a glowing recommendation from Chantal, there. And what about yourself, Chantal? If folks want to get in touch with you or learn more about your work, where can they go to get more information?

LAVERGNE:

Well, everything I do is about Fun Sensory Play. So, my blog is www.FunSensoryPlay.com. So, they can hop on there and find a lot of activities for kids. I talk about sensory issues, as well. We also have our store there that they can find our sensory decals. We also have some printables that we have. I also have the Teachers Pay Teachers store. Again, it’s called Fun Sensory Play And Beyond, they can find us there. I’m also on Etsy.

They can also find us, we have a really great audience on Facebook. So again, it’s Fun Sensory Play. And we share a lot of ideas for sensory play and just play in general. And sometimes I slip in some autism stuff for early intervention or speech or gross motor skills, fine motor skills, anything that’s related to our niche. And we just have an amazing community there. So, they can find us there, as well.

SPREEUWENBERG: 

Wonderful. Chantal, thank you so much for sharing your experience with us. It’s been great to connect with you and get the important message out to our listeners about early intervention and detection of autism. Thanks so much!

LAVERGNE:

Thank you!