Ep #49: Autism in Children: The Importance of Early Intervention with Shannon Urquiola

Shannon and I had a lovely conversation about the way to support people who are going through this journey with their own children and how important it is to recognize that while it might look different, that doesn’t mean that it needs to be bad. It was a very encouraging conversation and it was helpful as well and I hope you enjoy it. It’s coming up right after this.

Welcome to the Raising Healthy Kid Brains podcast where moms and teachers come to learn all about kids’ brains, how they work, how they learn, how they grow and simple tips and tricks for raising the most resilient, kind, smart, compassionate kids we can. All while having lots of grace and compassion for ourselves because you know what? We all really need and deserve that too. I am your host, Amy Nielson. Let’s get ready to start the show.

Amy: Shannon, welcome to the show. I’m so happy to have you on today.

Shannon: Amy, I’m so glad to be here with you, just looking forward to this all week.

Amy: This is going to be so fun. So we are talking about autism today. And I feel like this is just such a big topic and so important. And I’m so excited that we get to kind of dig into it because I feel like there’s a lot of maybe fear around it or questions around it and people just don’t really know. So I’m excited to just kind of get more information and share that with people. And then maybe get some tips and ideas for everybody. So tell me a little bit about your background first and just kind of how you got into this and why we’re here today.

Shannon: Sure. So I am a mom to two amazing young adults. My son Jordan is 27 and he is on the autism spectrum. I am his guardian and full-time caregiver, so he will live with me. He is incredible and he has a 25 year old sister, Madison. And so I got into this because I was actually in the beauty business for 20 years and traveled pretty extensively throughout the United States and internationally as well until Jordan was probably in, I think he was in third grade.

And there just came a point where he needed more of me. And I knew that this was a journey that I wasn’t planned for. I wasn’t prepared for it, let’s just say. And I didn’t understand it. We were starting to have challenges in school. He was having negative behaviors. And so I decided that I needed to leave what I was doing and I needed to understand advocacy, special education advocacy.

So I actually went into special education advocacy because I knew that if he was going to get everything that he needed to be successful, that I was going to have to understand it. There were so many things about it that I didn’t understand. I would go to meetings at schools and I would leave crying because I didn’t understand anything. They were looking to me for answers and I didn’t have any. I was looking to them for answers. I was like, “Well, aren’t you the expert? I’m just mom over here that planned for a typical child and that’s not what was delivered.”

So I got into educational advocacy and I spent 10 years building an educational advocacy company, working with some incredible families across the country and advocates. And then there was a transition point and I spent many years asking God, “Why me? Why me? Why did I have this life? And why do you trust me so much? Because I feel like I’m failing every day.” And so there came a point in 2020 where I decided that, I figured out what God wanted me to do. And I was meant to work with moms who were raising children on the spectrum.

But I also knew that the educational piece was very important. I didn’t want to just start another educational advocacy company because I knew moms like me needed more. And so my goal, Amy, was to provide a place where moms could get everything that I felt like I was missing along the journey, so became Not Your Average Autism Mom.

Amy: I love it so much. It’s so amazing when you make it through really hard things and then you can go and help the next people through it and just make it a little easier.

Shannon: My heart is just overflowing with joy. I literally, so I’ve had my membership for three years now. And these women are the village that I never had. So as much as they feel like I’m helping them, they’re such an important, amazing, blessing in my life. And to have them, I actually have, three of them are coming to my home to visit at the end of the month in different time periods.

But we feel like we know each other, so it’s not even weird. We spend so much time together virtually, but we’ve never met in person. And so I’m like, “I can’t wait to actually hug you.”

Amy: That kind of support just sounds so amazing. I feel like sometimes when we have children with special needs or challenges, it feels very lonely as a parent. And you feel like maybe even sometimes there’s support for your children or resources for your children but you’re like, “I need something for me too.” Because this is hard and not, like you said, not what I signed up for really. And so having that support is so, so good and so critical.

Shannon: Yeah. And I think the thing is, that’s really what our program is. And I tell people all the time, “Listen, you will find therapies, you will find playgroups. You will find all the things for your children. This is for you.” And we have a mom who actually, we just did some testimonial videos last week and she was saying that last year on her birthday, which just happens to be today, she said, “I had been following your podcast and all the things for a year.”

And she said, “It was my birthday and I just thought, you know what? I’m going to do this for me.” And so today’s her birthday, so we actually have a post on that says, “And congratulations for being here for a year on your birthday.” She said, “It was the best gift I ever gave myself.”

Amy: I love it so much. So good. Okay, let’s talk about, for moms that maybe aren’t there yet or that are wondering or have questions. What do you notice early on? Because I think sometimes maybe it’s easier to tell, but what kind of things are moms looking for with young children that they might start to notice and wonder if they should have testing done for their child?

Shannon: Sure. And I think that that is such an important topic. And I actually was just doing a presentation earlier this week. And that’s one of the things that I focus on in my presentations is, listen, if you know somebody, if you have somebody in your family that has a child, early intervention is so important. And I think that from a parent’s perspective a lot of times we want to think that they’re going to grow out of it. We want to think that it’s just a phase. And I think some of the things that you can look for and families and people whose lives have not been impacted by autism, don’t always understand.

And I tell our moms all the time, “Listen, if somebody’s life has not been impacted by autism, we can’t expect them to understand. I know you’re mad and you want them to understand and you want them to know that your child is in the grocery store having a meltdown and they’re not a spoiled brat.

I get that, but if their life has not been impacted, they’re not going to understand.” So I think when you’ve met one child with autism, you’ve literally met one child with autism because they are all very different.

But I think some of the most important things that you can really look for, language is absolutely one of the first things because a lot of our children on the spectrum, their language is delayed in some way or another. While we know many of them are what is considered non-speaking, as they grow older and they have AAC devices to help them communicate. But language is definitely something that you would notice early on likely. They may have what’s called echolalia, which is where they repeat things that they hear, but they’re not talking conversationally.

Another thing, I know for Jordan, my son, he was actually reading before he was potty trained. So some of them can read very early. He could read words. He was reading the Bible by the time he was five years old. So eye contact is another one. And I would think one of the biggest things that I would say to look for is social play. Are they playing appropriately with their peers? When they go to the playground do you see appropriate play or do you see them off by themselves?

Because a lot of times a lot of our children on the spectrum prefer to play independently. So they won’t appropriately engage with their peers. So I think those are probably the top three things that I would say to look for, engagement. Our children don’t typically meet typical milestones at a regular, Jordan did not crawl until he was 12 months old. And he did not walk until he was 18 months. My daughter was running at 10 months.

So I’m very thankful sometimes that she was my second one because had she been my first, I probably would have been way more panicked than I was. Because while I had been around many other children because I didn’t have Jordan till I was 28. So a lot of my friends had already had children. So I had been exposed to a lot of different children and I knew that he was different. But I think I was probably where a lot of moms are, well, every child is different and maybe he’ll just grow out of it.

But I will tell you, we had a wake-up call. Jordan was actually six months old and we were living in California at the time. And we were flying to Florida for the holidays with him. And we went to the doctor for his six month check-up and I remember her coming in and saying, “Have you been sleeping at night?” And I said, “I mean, as much as I would expect to with a baby.”

And she said, “Well, I have called the ENT. And you’re going to leave here and go right to the hospital, to the ENT office because Jordan has ear infections in both of his ears so severe that if I had them as an adult, I would not be able to stand up.” And I had no idea. And so one of Jordan’s characteristics is he has an extremely high pain tolerance, which is very difficult as a parent. Because you don’t know when he’s hurting or when something’s hurt and still at 27 we still have that issue.

Amy: That is a struggle because they can’t appropriately communicate what’s happening. So okay, so this I think is a tricky thing though, because so often we have kids and just coming from my own experience, I have five children. And I had children that learned to walk really early and I had children learned to walk really late, but they all learned how to walk. They all walk very successfully now. And so it’s hard because I think we’re stressing as parents, if somebody doesn’t, if one of our kids isn’t hitting a certain benchmark, but they’re maybe ahead on some different ones or whatever.

And it’s hard to know is this within a range of normal or is there something that’s just off enough that I should be looking and asking more questions and trying to see if there’s intervention needed? And I think that’s a tricky thing. Do you have any recommendations for parents on that?

Shannon: It is a tricky thing, but here’s what I’ll say. Number one, always trust your mom gut. Because listen, we just have that instinct, we know. If you think that your child may have some sort of deficit or challenge or they’re not meeting these milestones, this is what I would tell you. There’s no downside to getting an evaluation. Maybe there’s nothing and that’s okay, that’s great.

But maybe there is something and if there is, early intervention can make such a drastic dramatic change in their life. Because the earlier you can get them the support and the services they need, the more successful they will be in the long run. So I always tell parents, “I know it’s scary, I get it. And I know none of us as a mom wants to have a child that’s going to have challenges, but getting the evaluation, there’s just not a downside.”

Amy: Is this something that you would take to your pediatrician and start there when you’re going in through those regular check-ups and say, “So I’m noticing this?” So you just kind of keep track of things you’re noticing. You’re like, “This feels a little atypical and maybe not quite normal.” And then ask them first and then go from there and [inaudible] out if you need to get an evaluation or not.

Shannon: I would definitely say that. And then I would also say that and again, it’s kind of I feel similar with pediatricians and physicians as I do with schools. And that if there is an understanding of special challenges or special needs from that pediatrician, then they’re likely more likely to say, “Yes, let’s get an evaluation and just rule out anything that might be going on.” But then you may have some other pediatricians that are like, “No, let’s just wait.” And they wait and wait and wait.

Kind of like schools, I always say, “When you have a principal that understands special education or has a background or a history or knowledge that that filters down.” And it’s the same thing with one that doesn’t. And so yes, that’s definitely where you start but if you’re getting resistance from your pediatrician, then figure out what the next step is.

Amy: Got it. Love that. Alright, so let me ask you this because I feel like this is something I’m still learning about actively right now. So we talk about early intervention and this is really important. What kinds of options are there for interventions? If I have a child I’m worried about and I’m wondering, just questioning maybe is this a thing, should I get an evaluation done? I think some of us are like, “Is there anything they can do? Is there medicine for that? Is it therapy? What does that look like?”

Especially if they’re fairly high functioning even. So can you talk me through a little bit about what options there are for care and intervention?

Shannon: So when a child first gets an evaluation, I want to say this before I dive into this. But I want everyone to know, there is a difference between an evaluation that you would have done in the school district. That’s an educational evaluation versus a medical evaluation. And a lot of people mix up the two and they are very separate. So just because your child’s, let’s just say your child has an autism diagnosis. That does not automatically qualify them for special education services in the educational setting. A lot of parents think it does.

They think well, he has an autism diagnosis, so I should be able to walk into school and get services for him. And that’s not the case. They have to be able to do their own evaluation a lot of times to determine is the autism diagnosis impacting his educational journey? So I think that that separation is important. The thing that the evaluation can help with, your child maybe needs speech therapy. And there’s a difference between speech therapy and language therapy.

So speech therapy is actually the way that your tongue works inside of your mouth to pronounce words. Language therapy is where they are communicating with words. So there’s two different things there, and parents don’t always understand that. But early intervention in speech or language therapy and/or both can be very helpful.

I will tell you, my son Jordan has a significant stutter. And so I took him to, when he was younger, to the most amazing speech therapist in Central Florida that there is. And he said to me, “Shannon, I could help him but because of his autism, I’m not going to be able to help him. And the reason why is because he doesn’t understand the concept that he has a problem.” So he said, “I could work with him and I could tell him to slow down, but because he doesn’t have that acknowledgement of I have a problem and I can fix it, it’s not really beneficial.” So speech therapy, language therapy, occupational therapy is another one. They do feeding therapy, too.

So maybe you notice that your child has challenges with eating certain things. A lot of our kids have a hard time with chewing because their motor skills, their mouth gets tired. So they don’t want to chew on meat and things like that that take more chewing. So occupational therapy, feeding therapy, those are all really great things.

And then the other thing is behavioral therapy, ABA, which is, some people believe in it, some people don’t. I’m very much the person that everyone is entitled to their own opinion. What works for one person may not work for another, but I’m not going to say that it’s good or bad. I’ve seen it be very successful with some families. And that goes back to a lot of if your child is very impulsive.

Maybe they are having significant behaviors. They’re having meltdowns in certain places. And I always tell parents, “There’s a difference between a meltdown and a tantrum.” A meltdown is something that can’t be controlled by them. So I remember an experience where I was in Home Depot with Jordan and he just went into this full on panic mode. And I just couldn’t figure out what was going on. I didn’t know if something was pinching him in the cart. Well, come to find out, it was just the flickering fluorescent lighting that we don’t notice.

So a lot of our children on the spectrum, Amy, they can’t, we have a filter that when we’re speaking to somebody, I don’t hear the air conditioner motor going loud. But with somebody on the spectrum, they don’t have that filter that we have. So they’re having to take in all of this information and then decide what to do with it. So it’s a different world that we learn about. But those early interventions. Those are some of the therapies that they can help with.

Amy: Okay, that’s really good to know. Starting that early kind of probably creates a compounding effect over time that really just helps them make a lot more progress.

Shannon: Absolutely. And I think that this is what I always tell parents, “Listen, the earlier you get the intervention, hopefully the goal is the shorter amount of time they’ll need it.” So if they’re five and we can get them the support they need, hopefully by the time they finish elementary school, they don’t have to go into middle school with these services and accommodations. Some will but hopefully that’s the goal.

I mean, I had a mom in our membership who her daughter went through almost two years, I think of interventions. And now she’s graduated out of her IEP and she’s doing very successful. So there’s a lot of success stories. And I’d rather you be willing to go get the evaluation even though you’re scared, even though you’re scared and you don’t want to know maybe. Get the evaluations, because if there is a challenge, if you can get that intervention, hopefully they’ll move their way through it.

Amy: So good. Okay, so if you go and you take your child in for an evaluation and you find out there’s a diagnosis and your child is on the spectrum, what next? That feels big. That’s a big moment. What do you do next? What would be your top tips for next steps?

Shannon: You go to www.notyouraverageautismmom.com. And here’s the thing and I say this all the time. So when you go and you get a diagnosis, doctors just don’t give you a lot. I have talked to countless parents who said, “I walked in the doctor’s office and they said, “Yeah, your child has autism. Here you go. Good luck.”” And you walk out and you are lost and you don’t know what to do and you don’t know what that means. And I think probably the biggest thing for us as parents is all of the stories and the things that we’re going to create in our mind about what this is going to look like for our family.

Because you don’t know what it’s going to look like and there’s no certain way. What I will tell you is every parent experiences it differently. You have to let yourself feel all of your emotions because you’re going to go through a lot of them. You go through a grieving process. And I always tell my moms, “Listen, please don’t judge yourself because you’re not grieving the child that you have. I know you love your child. You’re grieving the child you thought you were going to have and that’s okay.” That’s okay because there’s a whole lot of us here that did not plan for this journey.

But you have to really go through that process because, Amy, one of the biggest milestones as a parent along this journey is acceptance, is accepting that it’s going to be different. It’s not going to be bad, but it’s going to be different. There’s a lot of, I say, stings along the way. I know other people say paper cuts and different things, but because there are things that our children will not do that other children will do.

Some of our children can’t tolerate birthday parties, my son is included. And what’s one of the biggest joys we get as a parent? Throwing our child the birthday party. So I always tell moms, one of the things that I say is that, “It’s really important that you understand that your child does not have to live life the way you do to be happy.”

Amy: That’s really comforting I think.

Shannon: They’re going to find their own happiness and you have to be there to support them in that happiness instead of what’s going to make me happy and that’s a tough pill to swallow. But acceptance along this journey is definitely going to make it easier. Not that there’s not moments that don’t hurt. I mean, you think of everything from, I mean I remember when Jordan started kindergarten, I spent months wondering how he was ever going to do it. He was having behavioral issues on a daily basis.

I just knew that there was no way he was going to do it, but I didn’t know what that meant. And I remember getting the phone call and of course, before I even answered the phone, the tears were just streaming down my face. And she said, “Mrs. Urquiola, can you come to the school?” Of course I said yes. And she said, “We just don’t think that this is the right placement for Jordan.” Well, at the time I didn’t know what that meant. What does that mean? Are you going to send him away somewhere? What does that mean? What does that look like? And not that every child on the spectrum will need special placement.

We have a lot of moms in our membership whose children are in mainstream classrooms with the support that they need based on what their individual needs are. Like I said, everyone is different.

Amy: Yeah. Oh my goodness, there’s so many little pieces and I think having that support as you’re being an advocate for your child, we talked about advocacy and how important that is. And so just having the support while you’re doing that sounds so helpful and valuable.

Shannon: Yeah. We have a mom in our membership who she’s one of my young moms, I call her. She has two boys that are four and five. And her older son was diagnosed on the spectrum and then her younger son just got diagnosed on the spectrum. But she’s been with us for about two years. And she is the most amazing mom and advocate for her children. And she says, “It’s because I decided that I need to learn everything that I can to help them be successful.” And I always tell people, “Awareness is really important.” I want people to share their stories.

I want them to talk about autism because that’s going to make it better for our families as a whole in our communities. And I laugh because I say, “Listen, I know I would scream it from the rooftops, you’re not there yet and that’s okay because it’s a process. “It’s a process when you first find out. I have some moms that I work with who can’t even say the word autism. They can’t talk about their child yet, but we’re working on it. It’s a tough thing for a lot of families because it is a different journey.

Amy: It is, and I think it’s hard to let go of what you planned on, the kind of the future that you had planned on. And then your future is going to look different and that’s okay but it is a thing that you kind of, I think like you said, you have to grieve the future you had expected. And kind of let go of that so that you can then embrace the future that is now your reality, for sure.

Shannon: Absolutely, yeah. And you can really find joy in those moments. That’s what’s important to me is that while it’s different. And I was telling somebody the other day, “Jordan never got his driver’s license or went to prom or had a first date and all of those things.” But I said, “But on the flipside, I never had to worry about Jordan driving drunk. I never had to worry about him getting arrested at a party. I never had to worry about him, God forbid, getting somebody pregnant.” All of those other worries that come along with parenting.

I think sometimes, my daughter’s 25 and she went to college. We dropped her off at college the day she turned 18. And she went on her way and the worries and the things that I worried about for her, I never had to worry about that for Jordan because he’s right here.

Amy: So it’s just different. It’s different, you’re trading out, I remember I listened to Brooke Castillo and she talks about how you’re going to have positive and negative emotions about 50/50. And she’s like, “There’s just different ones depending on either choices you make or things that come into your life.” And so yeah, so I think always just finding the good in it and being able to celebrate that. And then having people to be able to just support you through your hard parts too is so valuable so that’s really good.

Shannon: And that’s so important. The community piece of our membership is so important. And like I said, we were doing testimonial videos last week. And every one of them said the community piece is great. But the coaching piece is so beneficial to them because they realize that they can look at it from a different perspective. They can choose to see it this way instead of the other way. So the community piece where they can come in and say, “Listen, today has been really hard and I just need some love because he’s been screaming all day.”

Or a lot of times I’ll go for a walk and I’ll just jump in live in our community and be like, “Hey, you guys just had to get out. Jordan’s asked me 79 times the same thing.” And so I think just having where people understand because I know for me when I had Jordan, I didn’t know anyone that had autism. No one in my family had anyone that had autism, none of my friends. I couldn’t talk to anyone about what was going on behind closed doors because no one understood.

And that’s the difference in our community is that we understand and we actually know each other and we know each other’s children on a deeper level because we spend so much time together, encouraging and supporting each other.

Amy: I love this. Okay, if there’s one last piece of advice or encouragement or something you would leave our listeners with, what would it be?

Shannon: If you notice that maybe your child is not interacting appropriately with their peers or you see differences, go get the evaluations. Go get the evaluations because there’s not a downside. It may very well be something that’s just little, a speech intervention or a language intervention for six months or a year could bridge that gap. Because that’s what we want to do is we want to bridge that gap. And if we can do that before third grade because up until third grade you’re learning to read. And at third grade you’re reading to learn.

So if there’s deficits, we really want to try to bridge those gaps early. So I would just encourage you, I would just say, I know you’re scared. I know this you don’t know, but we don’t know what we don’t know. So go get the evaluations. And then if you happen to have a child on the spectrum, I just want to encourage you to embrace this journey because while it’s different, while there is going to be many hard times, there are lots and lots of celebrations and joy along the way as well.

Amy: I love that so much. Thank you so much for coming on. I just feel lifted and encouraged. And I think just helping build awareness too like you said, it’s so valuable for parents that don’t have someone that’s on the spectrum or not closely related to someone that is. And just kind of don’t know very much about it yet. So this is really helpful.

Shannon: Yes. And I always say, “Just don’t judge what you don’t understand.” And I say to people, “I’m really working hard with Jordan now on navigating the grocery store and putting gas in the car and the debit card.” And so I just say to you, just know that as parents we’re doing our best. We’re doing our very best and we feel like we’re failing every day. So just give us some kindness and love and that’s what I ask for in the community.

Amy: I love it. Thank you. This has been such a great conversation. Thank you for giving us your time today and coming and sharing with us and giving us some advice and support and information.

Shannon: Absolutely. Well, I just, like I said I want everyone to know that while this journey may be different, it’s not bad.

Amy: That’s so good. Okay, and everyone, we will have a link to Shannon’s website in the show notes, so you can grab that. But do you want to just tell us one more time, again your website?

Shannon: You can find us everywhere at Not Your Average Autism Mom. Our website is notyouraverageautismmom.com. I have a podcast that I have plenty of parents that listen to that do not have children on the spectrum. I cover a lot of different topics on just parenting in general. We have over 150 episodes and you can find us everywhere at Not Your Average Autism Mom on your podcast platforms, Amazon, audible, iHeart Radio, and yeah, just come check us out.

Amy: Sounds amazing. Alright, awesome. Thank you so much.

Shannon: Absolutely. Thank you, Amy.

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Thank you for hanging out with me today for this fun chat on Raising Healthy Kid Brains. If you want to see more of what we’re doing to support kiddos and their amazing brains, come visit us on our website planningplaytime.com. See you next week.