53. Practical Tips While You Wait for Autism Services & Referrals ft. Amber Arrington

In this podcast episode, Brittyn talks with Amber Arrington, the founder of Autism Savvy and a mother of six, three of whom are autistic. Amber shares her journey from navigating the autism space with minimal support herself to now supporting parents with newly diagnosed children. Listen in as she discusses the challenges and triumphs of accessing feeding therapy, emphasizes the importance of a multidisciplinary approach for children with sensory needs, and gives practical tips about what to do as you wait for services or referrals for your child.

She is also hosting The Autism Savvy Summit, a FREE event featuring over 20 speakers specializing in autism addressing topics like potty training, feeding, and behavioral techniques for parents waiting for an autism diagnosis or services. I'm so excited to be a speaker at this summit and I hope to see you there!

Mark your calendar! The Autism Savvy Summit is taking place from April 27th to April 29th and you can sign up HERE! You can also DM me the word "SAVVY" on Instagram and I will send you the link to sign up!

You can find Amber at:

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TRANSCRIPT

Hi, I'm Brittyn, a Registered Dietitian and autism sibling. I have a passion for helping parents of neurodivergent kids navigate nutrition and wellness for their child, one small step at a time. Here we'll explore practical nutrition tips, learn from top autism experts, break down the newest research, and share inspirational stories that will empower you to utilize nutrition to help your child feel their best and thrive.

Listen in while picking kids up from school, sitting in a therapy waiting room, taking a quick walk or wherever you find yourself, looking for some inspiration and a friend to guide you along this journey. This is Nourishing Autism.

Amber Arrington: [00:00:00] I love the idea that autism is not an emergency, because it can feel I feel like, Oh no, my child's autistic. Now I have to hurry and do and do and do and fix and stop them from being autistic, essentially. Or that I don't have the time to process all the information and find what really does feel best rather than the first thing served up to me. So I love that idea. It's not an emergency. It is going to be okay and you can take your time to figure out what your next best step should be. [00:01:00]

Brittyn Coleman: If you are currently navigating a new autism diagnosis or you are on the wait list to receive services or an evaluation, this is going to be an amazing podcast episode for you. I spoke with Amber Arrington, who is the founder of Autism Savvy and a mom to three autistic children. She shares about her experience during this waiting process and how she is now creating resources to help parents as they wait to get services or an evaluation or even just navigating that new autism diagnosis.

She is hosting a free summit from April 27th to 29th. I am so excited to be a speaker at this summit. It is completely free and you can [00:02:00] register through the show notes below or you can also DM me the word savvy. S A V V Y on Instagram, and I would love to send you the link to sign up. Again, it is completely free and you can learn all about the different resources and services that you can be accessing while you wait on those wait lists, getting referrals.

Whatever your situation may be. And like I said, if you are also navigating a new diagnosis, this can be a fantastic resource and tool for you. I know that the waiting game can often make you feel pretty helpless. And so it's really exciting to be able to have free resources to help you navigate this time.

So I'm super excited and I hope to see you at the Autism Savvy Summit.

Welcome to the podcast, Amber Arrington.

Brittyn Coleman: Hi everybody, welcome back to the Nourishing Autism podcast. I'm so excited to be sitting here with Amber Arrington who is a newer friend of mine and I'm so excited to [00:03:00] learn more from you and have you share more about what you do for this community and how you're involved. So thanks for being here.

Amber Arrington: I am so happy to be here with you today.

Brittyn Coleman: Well, we originally met because we were both working on our memberships and we found out that we were two of three people of like thousands of people that worked in autism.

And so we connected from there. And so it's been really nice to be able to connect with you. And then you just recently also grew your Instagram , really quickly, which doesn't really happen anymore. So I feel like what you're sharing just really resonates with parents. I mean, it's pretty obvious just how quickly you grew.

Amber Arrington: Thanks. I mean, it's weird to be like complimented on growing a following cause you do do it intentionally, but also you're not sure if it will work or if people will like what you have to say or even what to say in the beginning. So yeah, it's been nice to feel like people want to hear what I have to say.

Brittyn Coleman: Totally. Well, tell us who you are, what you do and who you support. [00:04:00]

Amber Arrington: Sure. So I am Amber Arrington. I am a mother to six children. And I am a mother to three autistic children. So I have kind of fallen into this autism space. Not just as a mother to autistic kids, but now I do support parents navigating

an autism journey with their child with a particular focus on those brand spanking new to the autism diagnosis.

Brittyn Coleman: Yeah. And I mean, I would be curious to hear your story, kind of learning about autism and trying to navigate the space because I don't find that it's just as straightforward as it sounds.

It's really trying to figure out what is necessary for you and also having the right practitioners and the right place at the right time is going to really impact how you get the right services and how you view autism. There's so much involved. So share more about your journey.

Amber Arrington: I would love to, I'm going to do a super high level. I don't [00:05:00] know, Brittyn, did you know my book just came out? I saw it online cause you, I think you did a giveaway, right? I did a giveaway. Yes. But it just officially published actually today. I only say that because I'll give you super high level, but I write in detail about it in the book, which is called Not a Typical Motherhood.

So I, yeah, it's been a journey and I've been doing it for 20 years. So essentially my oldest son, didn't receive his official autism diagnosis, the medical one, until he was 20. And then years later, so my four oldest children were adopted. That's the other piece. So it takes me 20 years to conceive through IVF.

 I finally have this miracle baby. And then a couple years in, Mallory ends up receiving her diagnosis. And a year after that, baby sister receives her diagnosis. Mallory at 27 months and Kennedy at 19 months. So, the little ones are currently 3 1/2 and 5 now. So, 3 1/2, 5, and 20. This is kind of how that went as far as getting diagnoses [00:06:00] in place.

So for Tyson, it's a completely different journey. He never did ABA. He had a little bit of speech in OT, but largely it was a lot of just me fumbling through missing it, meeting his needs all along the way and knowing so much more now and wishing that I could have a do over a bit. But he's doing well, and with the little girls, because I was so comfortable just being an advocate and knowing what things to go for, it was a little bit easier when Mallory was diagnosed, although that was a hard realization at first.

 I knew right away we would go get her into ABA because at the time, that's all I knew that you did. If your child's autistic, you put them in ABA. I didn't know any other options. I want parents to know all their options. And then when Kennedy was diagnosed, that was pretty easy, she just would go to the same place as big sister.

Mallory's had speech and OT. She's graduated from speech at this point. So all my kids are speaking. [00:07:00] So there is that piece just to note. I know a lot of other families are not in that exact same circumstance with their autistic kiddo, but I mean, high level, that's where they're at now. There's so much detail that goes into that journey and how we arrived at diagnosis and services and thriving, but I would say that we are there.

Brittyn Coleman: It's interesting because you did have two polar opposite experiences with your son and then your daughters. And so it's like, yes, you had been through it before, however, It's a completely new experience.

I feel like you're having to navigate services all over again, and kind of learn the system for little kids versus the system for an almost adult. It's completely different. And the services that are available are also going to be completely different, definitely in the benefit of your younger girls, because there's so many more services for kids too.

Amber Arrington: You're really right about that. And it's still so much navigating, so now it's the first time I'm currently [00:08:00] navigating putting an IEP in place for a five year old. I've never done that before. And I'm navigating putting a 20 year old in vocational rehab services. I've never done that before.

And so there's always so much learning and growing. But, at least high level, I understand the things to do, but it's figuring out the inner workings on how to do them.

Brittyn Coleman: Definitely. So, how you support families is when they first receive that diagnosis, or is it when they're in the process of receiving that diagnosis?

Like, at what point do people typically find you and look for support?

Amber Arrington: I honestly, I work with them all along the way. I work with parents of teenagers or young adults, and then I just have a heart for the parent who is brand new to that diagnosis, like in the past month or is waiting for diagnosis.

For the assessment and when they're stuck in that place of fear and worry and don't know much about autism and just don't even understand what's available to them. I love to take that person by the hand and say, it's going to be [00:09:00] okay. This is how we're going to do it.

Brittyn Coleman: Did you have somebody do that for you?

Amber Arrington: No, no, certainly not. I don't think very many people do get that. And no one in my family has an autistic kiddo. None of my friends had autistic kiddos. I have one very good friend now that does, but in general, so many of us do end up feeling so alone.

Brittyn Coleman: Yeah. I mean, what was that journey like for you trying to find the services?

Like where did you, where did you go?

Amber Arrington: Okay, good question. So obviously it's a lot of Google and Facebook groups, frankly, and YouTube videos. But as far as finding services, I have found Google to be helpful, but also overwhelming, and Facebook groups are the same. So, I do find that local Facebook groups, for example, in Arizona, there's several "Arizona Autism Mom" Facebook groups.

And I think that those kind of groups I don't find them that great for actual support or learning about autism necessarily. I think they're great for local service [00:10:00] providers. Hey guys, where can I find a speech therapist that takes this insurance in this area? So grateful for that resource in that way.

Brittyn Coleman: Definitely. Yeah, it's hard to find, I mean, hearing from my clients too, the right kind of community of parents who are going to, be in the exact situation that you are, like, hey, I just received a diagnosis, or hey, I'm waiting on a diagnosis, and I think that kind of waiting game as well, what was that like for you from receiving the referral to actually getting the diagnosis, It feels just like this limbo stage where you're not quite sure what to do.

You're not quite sure what to Google or where to go. How did you find that period?

Amber Arrington: So I'll focus on when I got my five year old's diagnosis, since that's the freshest, cause I was excited when I finally had Tyson's diagnosis in hand. Right. But when it came to Mallory, I wasn't expecting it.

So there was this time, this period of time between, oh, there's something going on. I've got to get this looked at.

[00:11:00] Then, for me, I was so dang lucky. It wasn't a long wait. I only ended up waiting, I think it was about six weeks besides when I realized there was something going on and we needed to have her assessed. I had that diagnosis within six weeks.

Brittyn Coleman: That is incredible. I mean. Insane.

Amber Arrington: I know.

Brittyn Coleman: It can be a year long even.

Amber Arrington: Oh, for sure. But in those six weeks, I was doing things like meeting with a speech therapist friend that could come over and like, hold my hand and be like, okay, so why don't you start trying to do these things with her? And she gave me tips and strategies and that really helped like to have just some few things that I felt like was in my control to do with my child, to help progress her and her development, to help her start talking more, to help her start connecting more.

 So having some tips and tools from a professional to help me during the wait was really helpful. And then while I was waiting for services, cause that then took another like four months, which for some will take longer or they can't access them at all. But [00:12:00] I did find times when I was like, man, I just, I don't know what to do with her.

I don't know what, I feel like I should be doing something and I don't know what it is. So I'd be reading books again, watching YouTube videos of speech therapists or BCBAs and trying to get tips on ways that I can engage with my child in a way that would help her connect and grow and blossom.

Brittyn Coleman: Yeah.

I mean, I think that's amazing and I think you're right. Google can be incredibly helpful to say, okay, yes, these are some things that we should be working on, but it can also totally throw you into this huge rabbit hole of overwhelm where you're like, all of a sudden there's so much I need to be doing.

I can't be doing all of this and still be a parent and still feed myself and feed my kids and so I think that having somebody to help you navigate these services is really helpful, especially someone who's been through it before, because it is really overwhelming and I have a lot of people come to me on the nutrition side just overwhelmed on nutrition alone.

And this is one small, I mean, I say small piece, it's a big piece of it all, but people who are [00:13:00] coming to me from Google who have been like, I've been researching all these different diets, all these different supplements, everyone says I need to be on all this stuff, doing all these things, and it's so easy to miss the most important points or skip over the really important basics of like, okay, no, we need to like, let's get organized.

Let's sit down. Let's look at your child's needs, your child's nutritional needs or just needs in general and how we're going to tailor to that because everyone is so different and Google can't adapt for that and so I find a lot of people coming to me in this Dr. Google overwhelm who are so confused because everyone everywhere is yelling at them to do all of these different services when in fact that might not be even appropriate for them.

And isn't worth the time for them to invest in energy because their child doesn't even need it. So that's just what I've experienced from the nutrition side. So I don't know if you've seen that just in general too with parents coming to you with just too [00:14:00] much info almost.

Amber Arrington: Oh yeah, or I'll get questions like, Can you help me? My child doesn't talk. What can I do? And I'm like, first of all, I'm not the professional for that. And secondly, I would have to ask you a hundred questions, but once I do, I can point you to the right people that can help you, with whatever your specific child is needing support in. Yeah, I definitely feel that that is happening and experience it.

Brittyn Coleman: It's hard because, I mean, there's so many different fields when it comes to autism. There's speech, occupational therapy, you know, dietitians, there's ABA, there's social groups, the list goes on and on, and I think, for me, being a practitioner in this space, I also have to be very acutely aware of, what my lines are, and, you know, I have learned from a lot of my colleagues, like speech and occupational therapists, about different areas, like flags that I should look out for, for like oral motor issues.

But I'm not a speech therapist, and I'm not going to be providing [00:15:00] that one on one therapy. And so, I think a lot of times, playing the connector role is really important for practitioners and people like you as well to be able to say, hey, I'm not the expert on this, but here are the people that can be. And so I think that's a really important thing, too. So kind of on that note, as I start talking about speech and occupational therapists who are typically feeding therapists, and a lot of people get me confused for, you know, an OT or speech therapist who provides feeding therapy, but in fact, I'm a dietitian who teaches parents how to do this at home and integrate what they're doing in their daily life.

You have gone through some feeding therapy with your, it's your oldest, correct?

Amber Arrington: No, the middle, the middle autistic one. She's five.

Brittyn Coleman: Sorry, the oldest girl is what I meant.

Amber Arrington: Yeah, my oldest girl, yes.

Brittyn Coleman: Yeah, yeah, yeah. So tell me what that experience has been like and what you've learned, through that process of going through feeding therapy so far

Amber Arrington: Yeah. So for her, it was not an issue of, motor, of her being able to chew or swallow. [00:16:00] But it was an issue of having very limited preferred foods. I would say I could count on about one hand, how many preferred foods that I could get her to eat. And that's very stressful, you know, that's very stressful as a parent when your child is not eating at all. It's another level of stress when they won't eat. And plus then she was also struggling a ton, especially during the potty training phase last year with constipation. And I just knew if I could get her to eat more fiber, if I could get her to eat things, then I wouldn't be using Miralax daily. It was so stressful.

But also what is stressful is trying to find a provider that is the type of provider you want, that works with your insurance, if you have insurance, that you like the technician or the therapist, that fits in your schedule, like trying to check off all those boxes. So it was really hard to find someone. I had determined I want an occupational therapist that specializes in feeding. And I was looking for one at a certain point that did SOS feeding. [00:17:00] Yeah.

Brittyn Coleman: That's my specialty too. I love it. Yeah. Yeah. The best feeding therapies for kids with additional sensory needs. It's just amazing.

Amber Arrington: Well, so then I would go to the SOS website directory and go through everybody listed on their page in my area and literally come up short on every single person I called or emailed.

And so I found one, it happened to be a friend of mine and this is what she did. But her schedule was crazy and Mallory's schedule between speech and ABA was so crazy. So I did have the situation where I finally, we dialed in a time, a window she had, this OT therapist that specialized in SOS, and she's like, I can take her at 1130 on Thursdays.

Well that would mean I'd have to pull her out of her ABA based preschool 30 minutes early once a week to make feeding therapy. So this was a tricky situation where I went to the school and said, Hey, I need to pull my daughter out 30 minutes early so she can go to her feeding therapy appointment. And they [00:18:00] said, I'm sorry, we can't let you do that.

They said, that's that just, it's our model. Like it's this preschool model that this group of kids have typically developing half autistic that meet every day, Monday through Friday from 8 to 12, and I don't know, it would be disruptive or something to pull her out. I had my own theories of why they wouldn't let me pull her out.

I was really mad about it. And, they said, well, we can work with her on feeding. And I was like, No, thank you. You know, inside I was like, I don't want an RBT doing feeding therapy with my child when I maybe if we had met with a specialist first and we had a plan and I could observe what's happening, then we could have them incorporate it.

Okay. But yeah, so then it just kind of really begs the question. And I posted about this recently, who should be providing feeding therapy? A lot of people have lots of opinions on this, so I'll let you chime in with yours.

Brittyn Coleman: Myself included for sure. Yeah. I mean, there's so many areas to feeding and [00:19:00] so anyone could say they can provide feedings, right? You sit down with some food in front of you, try to get them to eat, and what do people count as feeding therapy? What I count as feeding therapy is somebody who does have additional training for feeding. I want them to have that SOS training as well, because that also means that they're going to be trained in sensory processing disorder. Autism comes into that, and so we want to make sure that the practitioner is very well aware for feeding for kids with additional sensory needs and sensory aversions because it can easily go south when we don't use the right approaches. And a lot of those common picky eating approaches aren't tailored for kids with sensory aversions or sensory needs or sensory processing disorder. In addition to that, it's really common for autistic kids to have low muscle tone and oral motor issues. And even as a dietitian, I can't recognize that. That's not my training. My [00:20:00] training is to be able to identify the right nutrients, the right foods, how to fit this all in together. It's a speech therapist's job to be able to evaluate for oral muscle tone, to evaluate for is their tongue moving the food correctly in their mouth? Are they chewing correctly? There's so much that happens there. And if that's going on and we miss it, we're never going to have the success that we would because the child can't physically eat it. And until we address these underlying issues, we're not going to have success. And so I definitely take that speech and occupational therapy, I think both of them can be great feeding therapists. We just have to find the right fit. But I want them to have that extra training. And I do find that BCBAs usually take the behavioral side to eating and I feel that almost all the time, we need a sensory oriented approach, rather than the behavioral side, personally, is what I see in my practice. So, that's kind of my thoughts [00:21:00] behind that.

Amber Arrington: And I think that the consensus about that topic is, as far as, well which is best? Which professional is best? And it's going to depend. It depends, is the answer. And ideally, you would have a multi What's the word multidisciplinary team. Yeah. You would have a team that works together. Like ideally I would get to work with you and her OT feeding therapist and that would be golden.

Brittyn Coleman: It would be amazing. And that's one thing that I really like about the SOS approach is that they emphasize that. So there's centers all across the U S and there's, the biggest one is actually here in Colorado and it's called The Star Institute. So the whole SOS approach was created by a child psychologist. And so she wrote together who should be on the feeding team? Occupational therapy, child psychology, speech therapy, nutrition, and I'm missing one other person. Maybe the pediatrician is roped in as well because they really want this comprehensive approach, just like you're saying, it's so important [00:22:00] because there's so many areas, none of us can specialize in everything.

Amber Arrington: Right. Yeah. And so, I mean, it's good to just know we're not all going to be so lucky to be able to put together a team like that. We might be lucky to find just one person that helps us get on track, but it's good to know.

Brittyn Coleman: Definitely. One reason I've enjoyed following you on Instagram is because I feel like you open up sometimes just conversations that don't happen, or sometimes hard conversations, and you just do it very, curiously.

And so the conversation that happened around feeding therapy, you're like, what do you think? This is what I've learned. What do you think? And I think that that's a really important piece on social media and people can disagree, but also coming together to have like a productive conversation, I think is really helpful.

So I'm sure that's hard on social media because you are asking what do people think? This is a controversial thing. What are we feeling? So props to you for doing that because I think some of these conversations need to happen. I think sometimes they just don't and parents don't know what's happening.

Amber Arrington: Yeah. [00:23:00] thank you. I come up against that a lot when I think I want to post about this experience I had, but I don't want to offend my friends that are professionals in this area or this area, you know, but I put that aside because there are conversations that need to be had that parents might be thinking that no one's talking about.

Brittyn Coleman: Yeah, I mean, nobody can argue with your experience.

Amber Arrington: Yeah.

Brittyn Coleman: Everyone can have opinions, but that's your experience and what you went through. And so I think that's helpful for parents to be able to see as well. So just wanted to say that. I didn't plan on going down that route, but just wanted to say I've seen that from you on social media. And I think that's awesome. So thank you. So tell us your biggest piece of advice for parents who are just receiving a diagnosis. They don't even know where to start. What would you say to them? If you could say one thing.

Amber Arrington: I love the statement that I did not come up with, but I love the idea that autism is not an emergency, because it can feel I feel like, Oh no, my child's autistic. Now I have to hurry and do and do and do and [00:24:00] fix and stop them from being autistic, essentially. Or that I don't have the time to process all the information and find what really does feel best rather than the first thing served up to me. So I love that idea. It's not an emergency. It is going to be okay and you can take your time to figure out what your next best step should be.

Brittyn Coleman: I think that's really an interesting insight into this because I do see a lot of people and I've been told even I'm trying to hurry to get all these services for my child before they turn five and then you know because after five nothing works. I'm like wait where did you get that information? And so I think sometimes it does just take a second to find the right therapist, the right supports and learn about your child to be able to get the supports that are going to help them be successful in life and that doesn't have to happen overnight. In fact, it really can't. It takes time.

Amber Arrington: Yeah, I like to say it needs your attention, but it's not an emergency. And some people choose to do [00:25:00] nothing. And that is also an okay choice. Like you don't have to put your kid in therapy because they're autistic. You just have to try to support whatever need they have. But you don't have to do anything. And yeah, I think, take your time, there is an early intervention window and we should try to capitalize on it, I think. But you should not feel rushed into doing something that you don't know enough about yet.

Brittyn Coleman: Yes, I know. I'm totally in the early intervention space as well. I think that's going to be an incredible thing for parents also to be able to navigate the space and understand what resources they can have access to. Because we do know early intervention is really key, whether it's feeding or speech or whatever, but therapy doesn't just stop working at a certain age. You know, I think that's the exception that some people have told me and i'm like, no, that's not the case, but it is great to be able to be aware of services earlier or sooner than later and on that note you are hosting a summit to share more about services. Tell us what the summit [00:26:00] is and what it's called.

Amber Arrington: I love it. Yes. My company is called Autism Savvy. So, I'm putting on the Autism Savvy Summit. It's called The While You Wait Edition. So I am aiming to catch those parents that are in this window of stuck waiting for autism diagnosis. Which as we discussed sometimes is years, months or years, or they're stuck waiting for services, or in some cases they just can't access services. And I am bringing the experts and professionals to them so that like when I had a speech therapist to help me when I was waiting for my daughter's diagnosis to give me tips and tools to work with her on my own. That is exactly what I want to do for families is empower them to know some things to get some tips and some strategies so they can work with their own child and feel empowered rather than just sitting around twiddling their thumbs, feeling sad, and waiting for someone else to help them.

Brittyn Coleman: I think that's amazing. And I've seen the lineup of people that you have. Many people that I love, speech and occupational therapists. I'm also speaking as [00:27:00] well. And I'm really excited about that. So what can they expect from the people who are going to be sharing?

Amber Arrington: So I want to say it is a free event. It's April 27th through the 29th with a kickoff call on the 26th. And they can expect to hear from a platform of over 20 plus speakers. Like you said, speech, OT, BCBAs, therapists, psychologists, all there to give them somewhere between a 15 to 30 minute presentation on topics like potty training, feeding, nutrition, OT topics, sensory topics, behavioral techniques to work with your child, all the things, speech, all kinds of speech, Gestalt language processing, AAC usage, all of it, everything that you're going to want to know at least high level to begin to understand how to support your own child.

Brittyn Coleman: Amazing. What a cool resource. Well, I'm super excited for it and I'll definitely drop the link to register below because by the time this episode comes out, we will be getting really close, so people can register [00:28:00] for free through the link in the show notes and tell us where else we can find you Amber and connect with you.

Amber Arrington: You can just find me at Autism Savvy. com Savvy's with two V's and at Autism Savvy on Instagram. I spend most of my time. I'm also on TikTok.

Brittyn Coleman: I love it. All the places. Amazing. Well, thank you so much for spending the time to talk to us today. I'm super excited for your summit and I appreciate everything that you shared.

Amber Arrington: Oh, I'm so grateful that you brought me onto your podcast. I am a super fan and I appreciate you very much.

Brittyn Coleman: Thanks so much. I appreciate it. Thanks everyone for tuning in. [00:29:00]

Transcribed by Descript


About Brittyn Coleman, MS, RDN/LD

Brittyn Coleman, MS, RDN/LD, is a distinguished Registered Dietitian and Autism Nutrition Expert, known for her innovative, sensory-friendly feeding approach to nutrition for children on the autism spectrum. As the founder of the Nourishing Autism Collective, and as an autism sibling herself, Brittyn brings both professional expertise and personal understanding to her work. She empowers families with her expert guidance, helping children receive essential nutrients for optimal health and development. Her strategies are tailored to the unique dietary needs and sensory preferences of each child.

Brittyn's influence extends beyond her membership site through her active social media presence and her popular podcast, 'Nourishing Autism'. Her educational content on Instagram, YouTube, and other platforms has established her as a leading voice in autism nutrition, providing valuable resources, practical advice, and a supportive community for parents and professionals. 


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52. Navigating the IEP Process with Collaborative Success with Lisa Baskin-Wright, IEP Coach