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Hi everyone.
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Welcome to Around the Spectrum, where parents, prairies, and those in between pull up a chair for honest conversations, grounded guidance, and real stories about raising and supporting autistic kids.
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I'm your host, Wendy Manganero, parent marketing leader and longtime autism ally.
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I know how overwhelming and isolating this journey can feel.
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That's why we're here.
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Because when we sit at the same table, we understand more and judge less.
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Let's get into today's episode.
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Today we're joined by professional Anna Sturgeon, who isn't here to talk at us, but to talk with us.
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Anna is a board-certified behavior analysis and licensed behavior analysis in Houston, Texas.
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She's a proud wife and mother of two children.
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She received her bachelor's in psychology from Texas AM and her master's in human development and early childhood disorders from the University of Texas at Dallas.
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She became a BCBA in 2016 and has focused her work around early childhood adolescent intervention for the past decade.
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She has worked in various clinical ABA settings and charter schools.
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Throughout her career, she recognized the importance of early assessment, intervention, and education for families.
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Unfortunately, so many families experience lengthy wait lists for assessment, unclear instructions or recommendations for therapies, and a general lack of individualized compassion.
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To bridge that gap in our local community, Anna started Shine Behavior Services in 2024 with the goal of providing low-cost, no wait list autism evaluations, caregiver support, virtual and in-person, as well as development trainings for professionals and volunteers working closely with special needs families.
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Compassionate care and individualized support is the core of Shine's purpose with the goal of shining a light on your family's autism journey.
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We'll dive into the real world of supporting autistic kids, what's working, what's not, and how we can bridge the gap between research services and real family life.
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Today we're going to discuss compassionate care at the starting line, guiding families from diagnosis to direction.
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And welcome, Anna.
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Thanks for being here with me today.
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Thank you so much for having me.
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I'm really excited.
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I'm really excited to I love recording podcasts, especially when it's so meaningful for so many families, because it's quite the journey from the moment you get that diagnosis and it can be overwhelming.
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But let's get into the actual questions for you.
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The first one I want to know is you described your work as a true passion project.
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Can you take us back to the moment or the season that made you realize you wanted to walk alongside families from diagnosis to treatment with compassion with the center?
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Absolutely.
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I started in this field before I was married, before I was a mom, as my time in this field working with so many different families evolved.
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I just really started to see gaps that kept coming up.
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No matter where I was working, whatever clinic I was at, or whatever capacity I was supporting families in, I just kept seeing similar gaps where families were given either very cookie-cutter instructions for what services to seek, or they were completely overwhelmed by the process of even getting a diagnosis, any clear, unbiased guidance.
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A lot of families felt like if they asked a question, they were being sold a certain setting or service.
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Throughout my years, I just kept seeing those same gaps.
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And I was like, how can I help fill those in my local community?
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At the peak of COVID, I started to see those gaps widen.
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People didn't have access to supports and services and virtual support took off then.
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That got me thinking about how I can fill in those holes a little bit in my local community.
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Thanks for telling us about that.
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I love that you talk about these gaps because that is incredibly important for families to hear.
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They don't know when they enter the system what their journey is going to look like, how many gaps there are, and how much parent and professional advocacy is really important.
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I'd love to know from you when you're talking about these gaps and how you show up.
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What personal values do you bring into this?
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It's really a human-to-human contact we make with parents.
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I love that question.
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And I love the person-to-person contact.
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Sometimes the humanity of it can get a little lost.
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It becomes a checklist of things you have to accomplish.
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And we forget that everyone involved is a human.
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The parents are such a huge part of their child's development, of their story.
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Sometimes the parents take a back seat and there's so many resources for the child, but the parent might not receive that same level of understanding, compassion.
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For me, the compassionate conversations, the compassionate caring, like that is just so important that parents feel seen and heard, that they have a space to ask questions without judgment.
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Anytime I meet with a family, I tell them there's absolutely no silly questions.
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If you have it in your mind, you need to be able to ask it, making sure that everyone feels respected and seen and heard is one of the core values.
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And just making knowledge and resources accessible.
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I don't think there should ever be a reason why a family does not have equal access to all these amazing services that are out there.
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And I agree with that.
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Sometimes it doesn't feel like that, but it's so important.
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I always talk about two things.
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One, it's so scary to go on Google or AI.
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So really being able to have somebody in your corner to advocate and talk about those things.
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And but I want to go back to what you were just saying originally with the idea of that there's all these gaps.
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I think there's different parts broken from diagnosis to treatment and what's best and what's not best.
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But I'd love from your perspective, for those families starting out, what do you see the most overwhelming or broken part of the journey right now?
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Yeah, that's a great question.
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At the very beginning, there's always the seeds of self-doubt.
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You might start seeing some concerning behaviors or slower development things potentially on your radar.
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There's still these biases, stigmas surrounding getting assessments done or asking questions.
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Sometimes we feel like if we ask the question out loud, it makes it real.
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Really, it's the opposite.
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It's always there.
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We just want to make sure that we get the best services on the ports possible.
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That initial decision to bring up concerns and seek out those answers is that very first hump that you have to get over.
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Once the recommendation is made by the pediatrician to seek assessment, you would like to think that you would be able to access that service relatively quickly.
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But unfortunately, in the Houston, Texas area, and wait lists are 12 to 18 months for just the assessment.
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That's 12 to 18 months of not being able to access services through insurance, which obviously the out-of-pocket cost for therapies is astronomical.
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So that's not typically an option for a lot of families.
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But of course, insurance requires medical diagnosis.
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And to get the medical diagnosis, you have to be on these lengthy wait lists or have a lot of money on hand to pay for an out-of-pocket full evaluation.
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That was one of the big driving forces behind Shine.
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I wanted to be able to offer low-cost, no wait list evaluations to bridge that gap.
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Without the medical diagnosis, your access to services is so much smaller.
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It also opens up the door for government-funded supports, especially later in life when you start applying for different supports that are out there.
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Those wait lists are years long.
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So there's gaps throughout the entire journey.
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Anywhere that we can shorten that gap is a value.
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That's true across the US, is that there is a huge gap between I think something's wrong to the ability to even get the diagnosis.
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I know even if we were and so many adults are trying to get diagnosed now, there's an even bigger gap if you're an adult telling, oh my gosh, you know.
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And I think that it's one of the things that as a field we have to look at how to shorten those gaps so that all kids who need it get the services.
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When I got my son's diagnosis, I was honestly besides myself because there was so much guilt of like, did I do something wrong?
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There's just so much that you go through.
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Did I do something when I was pregnant?
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I had all of those emotions and thoughts.
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I worked in special services at the time, and I was mad at myself for missing it, even though I've only worked with teens and adults.
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There's all of these things that you go, like, how did I miss this?
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I brought him in for his speech.
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He's made up his own language.
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He's almost two, right?
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That was the only thing.
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And then they were like, let's look at some of these behaviors.
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I was like, oh my goodness.
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In your experience, when families come to you, what emotions are you seeing the most often?
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Fear, guilt, grief.
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I've experienced all of those.
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And I think that's where compassionate care really comes into play.
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For all my years of experience, I've worked with so many different professionals.
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And there are those that struggle with that part.
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They struggle with absorbing the emotions of family members or navigating how to build rapport through those strong emotions.
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But that's always been the part that has meant so much to me.
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The most common emotion is fear.
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Fear is kind of the underlying emotion.
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And sometimes that comes out in anger, sadness, disbelief, or denial.
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Almost always there's this underlying layer of fear.
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So I always try and meet families there to start with and acknowledge right off the bat this is overwhelming.
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And you're not a bad parent for feeling scared or overwhelmed or wondering if you did something wrong.
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All these things are very natural emotions.
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Professionals try to shy away from that and stick with the scientific facts or specific guidelines, and we forget the humanities side.
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I always try and meet families where they are with that and guide them through that.
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And then also make the referrals and recommendations for continued support for the families.
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I think the adults having therapy and access to great community groups or support groups is so important.
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It's another thing that Shine does is family meetups in the area that are free of cost, just to bring people together that maybe wouldn't have community otherwise, to meet other families in similar situations.
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That part is so important to take care of the parents.
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I have to agree.
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We had a local autism group when my son was diagnosed.
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And I was like, oh, I'm finally not alone.
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Which was good because the one thing I know about diagnosis, which I'm sure you have experienced when you work with families, is that I had really well-meaning friends and families who justified all of it to not be autism.
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They were like, you're just making a big deal out of this.
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It's regular toddler stuff.
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It's and I'd be like, no, no, there's a little more than that, right?
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Like, and so when you have that support system, but you're not alone, it really does make a huge difference because it doesn't make everything better, but it certainly brings you out of that solo way of thinking of like nobody else understands when families and friends.
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Again, many times well-meaning.
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Absolutely.
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And it allows for people to meet that are in the same journey or those that have gone before.
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That's what I love when families connect.
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My child is in high school now, and these are the things we navigated through elementary and junior high, or just different phases of life that they can support each other and walk through those emotions, and you're allowed to say your fears out loud, and nobody's judging you for it.
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Everyone's been in that same position.
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And so just being able to share resources and share experiences is so valuable.
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Absolutely.
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So part of sharing resources and bringing value is for the parents who are listening and they have new diagnoses, or they're waiting to get diagnosed, or they're waiting for ABA, or they're waiting for OTA, but there is a lot of weight lists out there.
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What are one or two things that they can do right now to kind of regain a sense of clarity or control?
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Because it feels very overwhelming.
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And I know that suddenly it was just like, here's what you need.
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Some sheets of paper, go forth and sing your ready.
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That's a great question.
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I think the first thing is to breathe.
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And that sounds so trite, but I think a lot of times, especially moms, when it comes to our children, we're given a task of okay, this is what they need, and we become bulldogs.
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And that's all we think about.
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We just go full throttle into okay, I've got to figure out what they need and I've got to make it happen today.
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And sometimes we have to just take a second and breathe and process a little bit.
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The next thing is to really try and look through the lens of what is going to be best for your child.
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Well-meaning professionals give a slip of paper with generic recommendations for therapy.
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They're not right for every single child.
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So don't be afraid to look at various options.
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One of the biggest things, and we spoke about this before, too, was having 40 hours of ABA is the kind of quote unquote gold standard of care.
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But I'm a big advocate for that's not always the case.
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Individualized care is what's most important.
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I've talked to many families that have said, my child's doctor said they need 40 hours of ABA and that's it.
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And there's, or the clinic I'm visiting is saying it has to be 40 hours or nothing.
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And I really encourage families to look around and see that there are other options.
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Just because one place tells you this is how it is, that doesn't mean that there's not other things out there.
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I also really encourage families to get connected with other families that have gone through similar situations.
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One of the wonderful things about social media is there's so many different groups where you can get great information from other parents.
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That's usually the first recommendation I give to families when they reach out to me.
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I say, join these groups.
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Don't get overwhelmed with all the information, but start to look through and see people's experiences and see that there's a wide variety of supports out there.
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When my son was in third grade, we had a teacher, we were in the IEP and they wanted to drop all services from the school he was at.
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I wanted him still to have some things in his plan because he's fairly intelligent, but they had stuck him in the back of the class.
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He never did well unless he was sitting in the front, not next to a door.
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There was a whole bunch of things he needed in order to succeed in the classroom.
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His teacher, because he was in the back of the class and he wasn't the problem child, was like, well, maybe you just have to accept he's a C student.
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And I was like, Well, thank God my husband was there that day.
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I had to take a real deep breath before I responded.
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Which brings me to that next part.
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And I think that you're right about that when it comes to a parent really being able to advocate.
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I used to host a support group for parents.
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And I've heard parents going, but the school's the expert.
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They don't know how far they can push in a kind way, and they don't know how much they should advocate.
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For parents who struggle with that, like with that advocating for their child, because they want to be able to trust the expert in front of them, which uh ideally that's what we all want to be able to do, especially when it comes to our children.
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What kind of ethical or grounded advice can you give to parents who want to be advocates but don't know how far they're allowed to push?
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I love that question.
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And I think that also leads into choosing your child's team of professionals to work with your family.
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I think having a collaborative outlook is so important.
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Obviously, what there's a lot of overwhelm, there's a lot of fear, and sometimes that can manifest in a combative or aggressive manner that typically makes collaboration more difficult.
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I always encourage families to come really respectfully and collaboratively, but firmly planted in what you want for your child.
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I think I always try and tell families when I work with them, you're the expert on your child.
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At the end of the day, I'm an expert on different tools and systems that can help in shaping and growing behavior, but none of that will work unless I become knowledgeable on your child specifically and you're the expert there.
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You already are an expert on your child.
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And if you come with a collaborative attitude of these are the things that really matter to me and to my family, that is such a great way to start.
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Understanding that just because one expert says something is the best choice, it doesn't always mean that's the case.
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I never want to encourage families to discredit or not listen to all the professionals that are telling them things, because going too far that way can be dangerous too.
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But don't be afraid, look for a variety of options and don't think that just because one provider told you this is the only way to do things, or the only therapy that's going to work, or the only methodology that's going to work, that that automatically makes it true.
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And I think when you're looking for a provider, you need to feel like they're coming with the same respect, the same collaborative attitude.
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You need to feel like they want to understand your child and not just see them as another number or a client ID.
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When you feel that connection, it makes trusting their judgment or recommendations much easier.
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And that's one of the things I train professionals on, especially BCBAs who work in this field with families, with young children.
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If the family doesn't feel like you are there for them and their child specifically, they will not trust or buy into what you're suggesting or recommending.
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You have to gain that first.
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My son is older for listeners.
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I don't think a lot of this would go on.
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What I had when my son was fighting.
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Because I just want to put that out there as parents listen, because I had some hard truths and the guidance counselor who would constantly look at me and go, but your kid's not as bad as the other, so we really won't give him any supports.
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That's not what any parent ever wants to hear.
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I'm not here about any other child.
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I'm here about my child.
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This was a very long time ago, and so many wonderful things have happened since then.
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Hopefully, nobody's going through that experience right now.
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It was a very different time 20 years ago when my son was diagnosed.
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I think this is an important question because I know this from hearing other parents.
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At one point in time, I thought my son would never read.
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I brought him to the doctor.
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They told me he had no phonics connections.
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We popcorn words for over a year and a half and couldn't get them.
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I say this because how do you, as the professional, help the parent balance honesty with optimism?
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Because every child is different on the spectrum.
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Big difference.
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Again, my son is he's ADHD and autistic, and he's applying Princeton now.
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This is the kid that could not read, and every child may or may not be able to over.
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Overcome.
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There's other things that he still struggles with.
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So how do you, when you have a parent who's upset because they're seeing the reality of today, that doesn't mean that's going to be tomorrow's reality.
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But when I heard that he'd never read, I was crushed.
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So how do you balance those two things?
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Yeah, that's a great question.
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And that ties into the professional towards the parent relationship and then also the parent towards the professional relationship.
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I always try and explain to people the compassionate conversation piece does not mean that you're selling sunshine and rainbows or that you're telling lies or promising certain outcomes.
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That's one of the biggest downfalls I see happening, especially with newly certified professionals who struggle with having those tougher conversations, because it is a hard conversation, but it's an important conversation to understand where we are today.
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We're going to have some real strengths and some weaknesses and some things that we want to focus on.
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We want to focus our efforts on.
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And until we acknowledge those things, we can't move forward.
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I see that a lot of times where people will avoid those conversations or brush them off and say, well-meaning family and friends.
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Oh, my son didn't talk until he was six and now he doesn't shut up.
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It's totally fine.
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And, you know, we don't want to give false hope or false promises.
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One of my most common things that I train on is how to navigate some of these challenging questions from families.
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When will they go to school?
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When will they start talking?
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When you get stuck is when you assign any length of time.
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Because the truth is every child is unique, every child is different, every situation is so different.
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I never give a timeline.
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I never say, give me six months and we'll achieve XYZ because I can't promise that.