What is early intervention… and why is it important?
On this episode of the Learn With Less® podcast, Ayelet spoke with Crystal Sanford, M.Ed., M.A., CCC-SLP, a pediatric speech-language pathologist, parent educator, advocate, mother of a child with special needs, and owner of Sanford Autism Consulting. Her work focuses on providing a place where other Autism and special needs moms can find clarity, support, and hope for their IEP journey.
We’ll discuss:
- Crystal’s personal and professional background, and how she came to do the work she’s doing today
- The three biggest myths Crystal sees from parents and caregivers about when or how to get early intervention services (assessment and/or intervention)
- What is the purpose of early intervention, what should parents expect, and what happens when a child “ages out” of these services?
- Crystal’s top 3 tips and resources for parents and caregivers who want to be the best advocates for their child
Resources Mentioned in This Episode:
Autism Inclusivity group on Facebook
Therapist Neurodiversity Collective group on Facebook
https://autisminternetmodules.org/
Crystal Clear IEP: Ensure Your Child Has the Learning Resources They Need
Crystal Clear IEP Conference (Monthly live webinar)
Connect With Us:
Crystal: Website / Instagram / Facebook
Ayelet: Facebook / Instagram / Pinterest
Before we get started today, I’d like to just acknowledge that although this episode is not exclusively about working with children who ultimately may receive an Autism diagnosis, we definitely touched upon it. And one resource for families who have young children who are Autistic that we failed to mention later on in the episode, is the voices of Autistic adults themselves. This is an integral part of understanding neurodiversity and the supports we can put into place to help all family members grow and thrive. I’m including some of my favorite resources in the show notes of this episode!
Text Transcript of This Episode:
Ayelet: All right, today I am speaking with Crystal Sanford. She’s a pediatric speech language pathologist, a parent educator, advocate, mother of a child with special needs and owner of Sanford Autism Consulting. Her work focuses on providing a place where other Autism and special needs moms can find clarity, support and hope for their IEP journey, which of course stands for individualized educational plan. For those of you not familiar who are listening, Crystal, you and I have been in conversation for the last few months about the wonderful advocacy and education work that you provide for families above and beyond all of your clinical work as a speech language pathologist, and I just want to officially welcome you to Learn With Less.
Crystal: Thank you so much for having me. I’m very excited. I’m so glad that we met and I’m very happy to be here.
Ayelet: Me too. Awesome. Well, I’ve asked you, of course, to come on to the show today to speak to us about navigating that path into early intervention for families who are concerned about their baby or toddler’s say developmental milestones. But first, why don’t you just tell us a little bit more about you and how you got into the work that you’re doing today?
Crystal: Well, I will say that I have been interested, passionate about the special needs community since I was a young child because my older sister has special needs. So that’s been a part of my life forever. And then in college, I discovered the field of communication disorders and speech pathology. So I said, Wow, this sounds like exactly what I want to do. I knew I wanted to be in a helping profession. And so I did that. And then I began to practice as a speech pathologist. And I have done so now for over 20 years.
But Autism began to be my area of interest and focus, I really loved those students as so many more about on my caseload, and I get more exposure and training. And then I had my first child in 2010. And at about 17 months, I began to suspect that something was going on that was different, unique. And so that’s when I began the journey of looking to have her assessed and get some questions answered, just, you know, because as an SLP are already looking at every little thing that they do, you know, but I just, I just couldn’t quite figure her out, I knew something was going on. And so that started at 17 months.
By age three and a half, finally, after persisting, we were able to get her assessed, and she was identified with Autism. And, you know, the team said, Well, nobody would have noticed this, you know, if it hadn’t been you Crystal. These were professionals that I knew and… Finally, they listened to me and assessed her. And so luckily, they did. And we persisted, and she began to receive services at three and a half. Soon after that, I realized that I wanted to do more in helping the community and more with my life as a professional. And 2016 is when I opened my practice Sanford Autism Consulting so that I can help parents on the other side of the IP table and, and really invest in parents so much more, because really, parents are the best advocates for their children. So I wanted to empower families.
Ayelet: Yes. Well, and like you said, If you hadn’t already known everything that you knew it would have taken a much longer time It sounds like for your daughter to be identified as being qualified for services. So that’s incredible. Yes. Well, let’s dig right in about… what would you say, are three of the sort of biggest myths that you tend to see from parents or caregivers about when or how to get early intervention services, whether that’s assessment or intervention, I think starting maybe with what you tend to see that’s incorrect. And then maybe demystifying those things would be helpful for people who may be thinking along those lines of improper information.
Crystal: Yeah, another issue that comes up and it, it’s not necessarily wrong. But I talk to parents who say, Well, I talked to my pediatrician and they say that they’re fine or, you know, start with a pediatrician. And I, not that I’m saying, Don’t listen to your pediatrician – start with the pediatrician, yes. But if you get pushback that again, just doesn’t sit right with your gut. And I would encourage families to persist. If we had waited for our pediatrician, my daughter would have not had been diagnosed until she was five, it was at age five, that my pediatrician finally said, You know what, I think maybe there is something going on.
Right. I think one of the biggest things that I see with families is they’re thinking and maybe almost hoping that the child’s going to grow out of it. You know, if they’re suspecting something, maybe they’re seeing some things, but maybe a family member has told them or they’re just hoping, oh, you know, they’ll grow out of it, or Oh, they’re just a boy or you know, all these other reasons. And so what I say to families always – and for various issues is ask questions and trust your gut.
And I encourage parents and caregivers to trust your gut if you sense that something might be different, unique, something going on with your child that I always encourage them to investigate. Just in case because of… the window of time is so small, between zero and five, really zero and three, four, is a real critical time. And so if you miss that, the time that it takes to catch up is can be long depending on the child and their needs and their challenges. So if there is a suspicion I encourage families not to just wait and hoping for the best but to investigate.
Ayelet: And by then you’re like, Wait a second, we’ve been there already.
Crystal: Oh, my gosh, I’ve talked to her so many times. And by then I’d had her assessment, she’d been receiving services for a year and a half. So, you know, that’s just an example of sometimes, especially if it’s not overt. For our children who have maybe some strengths in certain areas, they might appear to be neurotypical and functioning well enough to a pediatrician who sees them for five minutes, but they are missing the things that you see at home with the child every day. So if again, if it doesn’t sit well with you, beyond what your pediatrician says, I would say, continue to persist and investigate where you can.
And the last thing that I see a myth is labeling the child and parents who say, I don’t want to label my child, you know, they’re too young to put a label on them. And what I say to families is, again, trust your gut and investigate, because if you wait, the longer you’re waiting, the less service the child’s getting, the wider the gap is becoming. And so in order to support children best, it’s really important to start that work early, that intervention early. And so it could be that your child might be found to be at risk. Or they might say, come back in a year, maybe they are not going to say like, get a label, quote unquote, initially.
So don’t let that label scare you. Really, for us. It was a relief. When they were they told us that our daughter was on the autism spectrum, because we know something was different. And now we just set a name for it. And so in our house, we just say, your brain works differently. And that’s called Autism, you know, mine works differently. And I have to wear glasses. I mean, and so we kind of demystified the label in our home and just made it as a matter of fact. And so I tell parents, don’t don’t be afraid of a label, and let that deter you from seeking out the services that that your child needs.
Ayelet: Right. I love that, first of all, Crystal. And I think that it’s so important, because we tend to think of things in terms of the deficits, right? Like, I think when parents, especially parents, and caregivers who realize that something is different about their child, that maybe they’re not meeting milestones, or things just feel a little bit quirky, or a little bit different, that immediately, we as adults go to well, different, maybe bad or different, maybe other and we know that in our society, in our culture, we stigmatize “other” – we know that.
I think when we can look at it and find those professionals, especially who respect that those things that are different, are not necessarily construed as deficits, but we are focusing more on what tools can we use? What strategies can we use to help build up our children regardless of whether they have a diagnosis, or whether they are behind or you know, advanced, or whatever it is all we want, as parents and caregivers, our tools, right? To help us help our children advocate for our children, whatever best way we can, so that we can help them live their best lives, right? Like, it’s so important. That’s the goal.
Crystal: Exactly. That’s what we all want for our kids. Yeah, I tell parents all the time, we just all want for our kids to be happy to be successful in whatever way success is for them. And whatever tools they need along the way, then so be it, you know, I have another child who has different needs, not Autism. And it’s exactly what I told her therapist, I said, you know, hey, I’m a professional. But in this case, I’m a mom. And this is not my area of training, what tools can you give me to help support her because I want her to be empowered with tools that she can use along her way to help her, you know, be her best self?
So, so yeah, just, you know, helping kids be their best, whatever that looks like every child has the potential to be great at something. My husband has really been a cheerleader for our daughter from early on. And I remember him saying, you know what, who cares if she can’t tie her shoes, she is going to be so successful, that she’ll be able to pay somebody to tie her shoes when she gets older. So who cares?
Ayelet:I love that.
Crystal: Oh, yeah!
Ayelet: I would love and I think this sort of gets to that piece that we were just talking about, like what in your words would you say because if we’re thinking about… all right, well, get services, get those tools. Don’t wait, investigate. I love that that piece of it that you suggested is really just listen to your gut and investigate and look at it. Look at that feeling, sit with that feeling, wherever it takes you. Yes. What would you say really… like, why get early intervention services? What is the purpose of early intervention as you see it? Because I mean, I have my own opinions, but you work with families so much, and what should parents expect?
And then I’d love to get into also like what happens when a child ages out of those early intervention services, which are birth to three, right? And for instance, your daughter in your story, didn’t even receive early intervention services? Sounds like, right, she she started getting identified after age three. So yes, So first, let’s talk about because I think in general, the audience here listening to this podcast is primarily families and professionals serving those families with infants and toddlers. So I’d love to hear a little bit more about in particular, early intervention first. So again, what, just to recap, giant diatribe there. What is the purpose of early intervention? What can parents expect?
Crystal: You know, in my perspective, early intervention, it’s not to fix the child, that’s something I always tell parents were just because you get the intervention services, your child is not going to necessarily those, those things aren’t necessarily going to disappear, per se. And I knew that because for my kid personally, because I had worked with kids who were, you know, 2018 years old, up in high school, who have the same diagnosis as my daughter did, and still had some challenges.
I knew early intervention was not going to fix anything, but it was going to empower her with tools and empower us with tools to help see the areas of need, maybe not grow. And that’s this to see the gap not widen so much. And so that was our thought is that we were going to access services and you’re accessing your early intervention services, so that you’re addressing the areas of need, you’re building up the areas of challenge, you’re also maybe learning some tools and maybe learning about your child what their strengths are, because I think for every child, there are areas of strengths that we maybe miss, because we’re looking so much at the deficit. So when you receive the early intervention services, I think you learn more about your child’s strengths, and those areas, how you can use those strengths to help, then, support the deficit. So I think that’s really important.
I see it all the time with families who have those, you know, difficult experiences, for instance. So any, you know, professionals listening to this, remember how important that is, in your work with families, you know, it really can make all the difference. And yes, we have to understand what kinda like it can be a traumatic event, of course, for a family to, to receive the news of a diagnosis or to know to recognize fully like, Okay, what, what are those deficits? What can I do so, so what can parents expect around the process of all of this? Who are navigating this for the first time? Yes, they can expect to be completely overwhelmed. I’ll be honest.
Ayelet: Thanks for that!
Crystal: Yes, yeah. And be okay with that, like you said, and sit with that and be okay with that. Because it’s a very overwhelming process, especially if this is not your area of expertise. If this is not anything that you have any training, and it can be completely overwhelming. So I encourage parents to take each day one step at a time, take a notebook or phone or something that you can document your questions and document your feelings along the way, and process those feelings so that you have some way to list questions that come up so that when you get to the next therapy appointment, you have that they’re ready, and they’re not asking you Oh, do you have any questions? You’re like, Oh, you know?
So keep something with you, that works for you where you can document it. But you’re going to see your child get a lot of assessments. And assessments should include your input, it should include observation and should include some some standardized measures, testing, performance based, qualitative assessments of your child interviews, maybe with you with the caregiver, if there’s an additional caregiver, there’s a preschool teacher. So looking at getting a whole picture of your child and their skills, strengths and challenges. And then you will see a discussion of how we can intervene, how we can support the areas of need, it could be that you’re receiving speech therapy, in the home or outside of the home occupational therapy for those fine motor skills, you know, self help skills.
So then it may begin to be a time where you’re seeing a lot of appointments, and then also hopefully with that a lot of education for you on what you can do in the home to continue those services, because that’s one thing that’s important. It’s not that we’re going to hand over our child now and say here, fix them, or here, you know, do these things. But at home, it’s critical to carry that over, especially for our little ones to be using the same language and the same strategies in the home is really important to see the most success with early intervention.
Ayelet: Oh, my gosh, yes, thank you for that as well, that is such an important piece of it. And I think with that also, like really helping families see that it is a partnership and professionals do it is a partnership. And those moments when you have a therapist working with your family that that therapist needs to really be, like you said, teaching and facilitating your understanding of what you can do. And instead of looking at it, and instead of giving you you know more things, to do more things, to work on more toys to play with more helping you see the ways that you are already doing this, and then just eat that up a notch, right?
Like, just look at all of the things that are happening right here in this mealtime routine. And all of these things that are happening, when you wash hands before the meal or change a diaper or whatever it is, what else can we do in those moments to increase communication opportunities to increase joint attention to do all of the things that you may be working on with your child in those everyday routines and using everyday materials. And that, of course, is what we do here at Learn With Less® with everyone.
The value of those things, and it’s no different with a child who may have deficits, it’s the same like these are this is how children learn is is through this language rich environment and providing that when you have a therapist or educator in your home or working with you, you know, using a natural environment, then that is oh my gosh, such an important piece that it’s not just the therapist comes in for 30 minutes and right and does this magical trick with a magical bag full of stuff and then leaves, right? It’s the 23 other hours of the day, every day of the week, that that all of that magic can happen.
Crystal: And that’s why I love what you do and what you promote here in learning with less and using what you have, you know, our kids really benefit from the simple things and the naturalistic environment and carrying over those strategies and tools into your everyday routine. You know, I say this to to any professionals who are watching, that’s where you’re going to see the most success. That’s where you’re going to see goals met is and that’s how you’re going to know you’ve done a great job when those things that you have taught the parents are begin to get woven right into their everyday life in an everyday environment. So you know, it doesn’t take a lot of fancy things, and sometimes the fancy things take away from the real learning.
Ayelet: Yeah, absolutely, absolutely, Crystal. Well, let’s just take a break to hear a word from our sponsors. And then we’re going to hear a few tips from Crystal about what you can do to support an advocate for your child. And then we’ll hear a little bit about her favorite resources to share with families as well.
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Ayelet: Okay, Crystal, What tips do you have other than the amazing ones you’ve already shared with us, for families who want to be the best advocates for their young child or young children.
Crystal: So my first tip is to almost like what you’ve already said is to use what you have use what you know use the resources and and your intuition about your child. I have a great resource that’s available through parentscenterhub.org offers just a plethora of information about unique needs, how to investigate takes you from zero all the way till 21, which is when services and through school districts so and they have really great parent friendly resources there. So that’s one resource that I do recommend for families to investigate if they’re having some questions.
Ayelet: Fabulous. Any other tips for specifically for families to do things to look out for things to be aware of? I would love to know if you’re comfortable sharing Crystal, what were some of the pieces that you saw in your daughter that caused you to think… well, there’s something to look at here?
Crystal: So that’s a good question. At 17 months, I began to suspect that something was going on that was different with my daughter, because she had so many highs and lows, she had so many strengths, yet challenges, she had just out hard to develop milestones that were motor related, were all slow, she was slow. And all of them she didn’t start crawling until later, she didn’t start walking, she’d just start walking at 17 months. And so yet, she was so academically high at 17 months, she already could identify cars and numbers and letters, numbers one to 10 we have video of her being able to identify these things and say the same thing was so interested in learning letters, colors, numbers, that kinds of things. Yet she just barely went to walk, you know, was still messy with food eating that pattern of development was a question mark for me.
Ayelet: Just those, yeah, like you said, those highs and lows, the variability.
Crystal: The variability was so different.
Ayelet: Yeah, just out of curiosity, like she she was using words for these sort of pre academic concepts. But was she also using different kinds of functional words?
Crystal: She did a lot of labeling, but not as much. And we look and look back and see and that is much of bringing us in with that joint attention. And let’s talk about this Mommy, it would be more of a label or as she would ask a question to get our help. Yeah. But not as much of a dialogue between the two of us about something. Right? It will be more we’re talking about at a 17 month level, which would rarely be one word, maybe one word or two words. Yes, yes.
But just the way she used language and the purpose of it wasn’t what you would expect in my experience for a typical kiddo. And then the biggest thing that was a tipping point for me for her, I remember being at Target and she was in the basket and she was very verbal. She was hyper verbal. She was hyperlexic and hyperverbal, so she could identify signs, words, written, she could tell me you know, Walmart or whatever was – Kohler. The name on the bathroom sink. I mean, random stuff… but we were at Target. She was in the basket, and she began to say words, almost verbatim from an episode of Cailou that we had watched that morning. And I thought, Oh, my that looks, that sounds like Autism. It was that verbatim, verbally echolalia, just recasting why exactly what she had heard. Not like, Mommy, I like… I mean, you know, and her 17 month old where it was word for word what had just been on that episode. And so that was a concern for me. Because I know that that’s one of the telltale signs for Autism.
Ayelet: So that’s really interesting. And I’d love to just break that down really quickly for our audience, because people who might be thinking, okay, but what’s wrong with that? She’s just, she’s just repeating something that she heard. Right. So right. She’s, she’s repeating something that she heard, but not to communicate specifically with you about anything in particular, just for the purpose of repeating for the purpose of sharing information or making a comment or acknowledging that you were there talking about something that happened in the past?
Crystal: Yeah, it’s simply that she was just repeating what she had heard in her mind, and it was hearing it and then repeating it out loud, versus using language to communicate for Yes, any kind of social purpose. Exactly. Yes, for sure. You know, we also begin, I also encourage parents to observe your child via be a student of your child. And this is something that my husband is much better at than I am, because I’m always trying to facilitate navigate, but he’s a better observer, observe your child. Watch them, learn from them.
Let them teach you how to teach them they really well, if you give them that space, watch your child and play. Watch your child when they’re with other children, which is a really important thing as we start that journey from 17 months. For three and a half, it’s about that long, about 18 months before she got diagnosed. So during that period, I continued to observe her at preschool in comparison to the other kids, and the language that they were using, and the play, or the lack thereof, the lack of the reciprocity, she was always the one on the one side, and everybody else was engaging and doing things together, she was much more happier being by herself. If someone brought her into play, she would play for maybe about five minutes, and then she would end up somehow back doing her own thing. That’s just how she, she operated socially.
And so but I noticed those things by observing her, when people would talk to her, they would say, Oh, she can talk to me, she looks at me, I said, but you’ve got to see her with other kids. She’s not the same. She’s not like them. And not that every kid is the same. But they were just some things that were consistent with all the other kids that I didn’t see with her. So you know, really study your child and and observe them and begin to notice some things and take note of that.
Ayelet: Yeah, that’s the best tip I think anyone could ever get. Great. So in addition to that website that you mentioned earlier, for parents, what are some other favorite resources that you like to share with families who are looking for additional resources to navigate those early intervention services and actually support their tiny humans?
Crystal: Yeah. So I’d also encourage families to investigate the regional center. If you’re in California, the Regional Center is an organization that’s a nonprofit organization that is funded to support families, and they provide a wealth of services supports, especially from zero to three. And so check out the regional center in their area as well.
Ayelet: Right. And then for families who are not in California, because we have families from all over the world. This podcast, though the regional center is something that’s managed through the state of California, but in other states, it can be referred to as early start services as well. It’s through the Department of Developmental, yes. Is that correct?
Crystal: Yes. Yes, it is.
Ayelet: So yes, of course, check out what what are those services that are available to you through your country, your state or your municipality, whatever it may be. But there are services and programs out there, you know, all over the world? What about your services, Crystal has some amazing resources that you’ve created and support for parent education that you do as well. And I want to make sure that we spend some time on that as well.
Crystal: Yeah, I offer training monthly for families who have questions around the special education process. And so in my, it’s called the IEP parent boot camp, and now for that each month. And so in the boot camp, we talk about everything from federal law, special education, law, and the beginnings of that transition from three and on into where services are provided through the school district and that public education all the way through age 22. And so, how to manage that how to prepare yourself for the meetings, how to resolve disagreements along the way, all those things are covered in in that program. And so there’s a parent who is new, who maybe has a child they are they’ve discovered or has questioned by a child who is three, or approaching three and beyond, and they’d be a great resource to prepare you for what is to come.
Ayelet: Wow. It’s such an amazing thing because of exactly what we were talking about earlier of that overwhelm, it can be a giant thing, especially. And actually, I’d like to just go back into this because we mentioned that there is a process of a transition from when you’re zero to three versus when you hit that three year mark. These transitions from different kinds of services from what we were talking about through the Department of Developmental Services into managed more by the school district, for instance, in the United States. Can you talk just a little bit for just a moment a little bit about that transition? And what that’s marked by and what that looks like? And of course, that’s something that you cover when you work with families in a group?
Crystal: Yes. Yes, so that is a really important transition. When children are zero to three, like we said that the services are provided through the state and through that Department of Developmental Services. And this child might have an IFSP – an Individual and Family Service Plan. And the services that are provided through the IFSP versus what happens after three are very different. Because what’s provided when there’s zero to three, it’s so much more family based, so much more parent education and parent training, and all that good stuff where therapists may be working in your home or they’re working just there’s much more of an emphasis which it should be on supporting the parent and how the parent will then support the child throughout the way, but that changes.
And so once the child is around two and a half years old, that’s when that transition begins. That’s when your service coordinator should be helping you to reach out to your school district. And the school district, hopefully, in a best case scenario will get involved. And they’ll begin to do their assessment so that by age three, their assessment is done. And the child can begin to receive their services through the IEP process and an individual education program. And the school district will then take on to provide the services at whatever level it looks like for your child.
Unfortunately, what happens sometimes is that there hasn’t been that smooth transition. And so once a child turns three, and literally, when they turn three, the next day, you’re you know, you’re done all the services and and they begin now through the school day. So if it hasn’t happened to be a smooth transition at that point, then you’re starting from point zero at age three, and then it might take six more months before your child receives services. So if at all possible, I encourage parents to talk with their service provider and start getting that transition prepped early in preparation for age three.
Ayelet: Awesome, thank you so much for that Crystal. And again, that’s something that Crystal helps with when you when you work with her. Any other resources that you would recommend families just to be aware of, as far as you know, navigating this information and, and getting a handle on on things should they be concerned?
Crystal: Sure, I’d also encourage families to investigate if they’re considering that autism could be part of their child’s life. There is a website autisminternetmodules.org. And I tell you, anything you could ever want to learn about when it comes to trainings and acronyms and you know, strategies that work all those good things. They have been created by University modules for that. And so you can actually self paced take read through and go through these modules. And you can actually, if you’re a service provider, you want to learn more, you can do this and receive a certificate of completion at the end. So, you know, from ABA, or any types of topics that have to do with autism, there’s a module for that on this website.
Ayelet: Oh, great to know. I will be looking into that myself. Thank you. Yeah, Crystal, thank you so much for all of your time and energy today for everyone listening from home or on the go. Thank you so much for joining us and we will see you next time.
