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Hi everyone, it's Wendy from Around the Spectrum, where parents, pros, and those in between pull up the 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.
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As a parent, marketing leader, and longtime autism ally, I know how overwhelming and isolating this journey can feel.
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That's why we're here, 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 Professor Layla Farcian, who isn't here to talk at us, but to talk with us.
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Layla is a certified special educator and board certified behavior analyst with over 30 years of experience to bring children on the spectrum across school, home, and community settings.
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She holds a master's degree in applied behavior analysis from Columbia University and has led public school autism programs among the top in New Jersey.
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Layla is the founder and CEO of CircaTera and has built educational systems and data-driven programs that support children, families, and professionals nationwide.
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Welcome, Layla.
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Thank you, Wendy.
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Thank you for having me on and grateful to be in conversation with you and with everybody listening.
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Yes, just gonna be great.
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So today we are discussing what parents can actually expect in an IEP from the inside of the system because I know there's so much confusion.
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I realize that where you are in the world or where you are in the US or Canada may look a little different, but I think that there are some top expectations that parents can have and reciprocal communication.
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And so we're gonna dive into that.
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So the first thing I'd love to know is like a little bit about your background, because you say you've worked in autism education and ABA since the late 90s in both school and home settings.
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So can you share a little about your path and what you've seen change over the years and how schools support children on the spectrum?
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Absolutely, sure.
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So I started off my applied behavior analytic interventions journey in home programs and really witnessed firsthand what families deal with.
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What happens behind closed doors of a therapy session, the tension behind siblings, spouses, families not being able to attend birthday parties and social events due to the challenges that were presented to them with the diagnosis.
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Also, the day-to-day being able to handle anything from going shopping or just hygiene challenges or getting a haircut because it was super scary for the child.
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So I started in the homes, and I think that was something that when all of us, when we reflect back on our journey, we think, you know, what brought us to this point?
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And I would say that was a gift to start in the homes, really be part of the family's day-to-day.
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I even went on vacation with a family once and had to do therapy sessions because we wanted to avoid regression, which is a challenging factor when spend so much time and energy helping a child.
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One week on vacation should be relief from life.
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But for a family who's dealing with autism, it's scary.
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It could result in a loss.
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It's almost like a sacrifice.
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So, you know, having witnessed all those things, and then I went into the schools.
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And so I went into the schools with a sensitivity of who's on the other side picking up the child every day.
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What do they expect?
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And how do we communicate?
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And I started my first program in New Jersey and then went on to my fifth program now is Learner's Compass, which is my private practice.
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So built five programs in the top three, the third one won top three because we were highly collaborative.
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And so being in schools and also going into homes, it's been a journey.
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And I would say being on the school side, there's a lot I can I can share and talk about as we're talking about IEPs.
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Thank you for that.
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And the other day I went to go get my hair done.
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And my son's 20 now.
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And but there was a time when leaving the house was just so overwhelming to me.
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And a parent came in and they were sitting behind me, but the child was not having it.
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I and I don't know if there was a diagnosis or not, but the mom was so upset she had to leave.
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And I think education around like those fears of like going on vacation or aggression and or just taking your child out to be able to do something.
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I've really felt for this mother because they were not equipped.
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They were just not equipped on how to handle it.
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And so I quietly said something, but I understand that as another parent because that's the most awful feeling in the world.
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If you're not expecting it and your new parent to it is the reactions from everybody else.
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So I appreciate you saying that because sometimes parents think they have to hide at home because of the way their child reacts.
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Let's talk about like if you're new into the IAP system, because a lot of times, especially if you come into early intervention, you may just have had a diagnosis, your child may be going into pre-K or kindergarten.
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What should they really realistically expect?
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Who should be in the room?
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What's the purpose?
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And what tends to surprise families in that first one?
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Sure.
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To empower families, I just I think empowering is really key.
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Ask a couple of simple questions.
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One of them would be: if I make a request, how many days do you legally have to respond to me?
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In New Jersey, it's 30 days.
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A written request to the director of special services requires a written response within 30 days.
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It has to be in writing.
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I, you know, many families just don't know that.
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So I would say when a child is newly diagnosed and the system begins, and then the call is made to the school to find the appropriate program and support by age three, because now I assume the early intervention path has been taken, the state has been involved, but now it's time for the school to take over.
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What do their programs look like?
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Are they equipped to do autism treatment?
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Do they have a BCBA on board?
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How does that BCBA collaborate with OTPT and speech and school psychology?
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Who will be doing the evaluation?
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Will they do it at home?
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Will they do it in the daycare?
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And then once the determinations are made, does the child need one-to-one or do they need an inclusive environment?
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So there's just of these questions, but basically taking a look to see the infrastructure that's already in place in the schools.
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Some of them have one-to-one programs, some of them have 12 children in a room, some of them have six children in a room.
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What's the ratio of providers in the room and educators to the children?
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Is it an inclusive environment?
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So it really is very important.
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But what I would highly recommend is going into those kinds of meetings with the physician and the medical diagnosis and the report.
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Because if it's level one, two, or three, the questions are going to have to be directed as is the school equipped in its current structure?
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And if not, what will it do to welcome the child?
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How will it shift things around to make those accommodations?
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I love those questions because parents don't know what to ask, and it seems all very overwhelming when you're getting all sorts of information and you don't know what is the right thing to kind of respond with.
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And I like the idea that the expectation of the 30 days, because it if the school has 30 days, depending on the school district, that doesn't mean they're ignoring you.
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They're just allotting themselves the time to be able to answer and kind of get things together on the back side of that.
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So when it when it comes to obviously, there's a lot of confusion sometimes of what an what an IEP can actually do.
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So from your perspective, what are the common misunderstandings parents have about what the school is actually responsible for and what it's not?
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I mean, the IEP is a legal document.
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So if it says speech three times a week, OT four times a week, ECBA four hours a week, all of those are binding types of expectations that are set for the school year.
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Oftentimes, parents will take it home and review it with a professional before signing it, which is always a great idea.
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So it has great information in it because the people have evaluated the child and have proposed plans.
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However, a parent knows their child for many, many years before the professionals see them for the half hour or 45 minutes.
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So the assessment should be reviewed too, because this is the first time they're getting to know the child.
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And some children are just not responsive to strangers testing them, whether they're neurotypical or neurodivergent.
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Right.
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So I think really just making sure reading those documents very clearly at home and is the assessment true to the child's capabilities?
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Is it reflective of it?
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And is it going to result in the right amount of services and the right amount of support for the full school year?
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One thing I want to emphasize with autism and IDD is that every moment should be a teaching opportunity and neuroplasticity, because the brain has plastic from age two to three to four to five, most plastic before age five.
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That's when we want to be most intensive.
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So one of the things that I have a this is a follow-up question for you is that my son was diagnosed years ago.
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I had the diagnosis, I brought him to the pre-K, and they didn't want to see that back then.
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They literally took his diagnosis and put it in the drawer and went, we don't go by that.
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So what can a parent expect if they are already bringing their diagnosis to the school system as opposed to asking the school system to kind of make that diagnosis?
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I know that there's still a plan, but how much are they supposed to work together with the diagnosis the parent brings in themselves?
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The school really responds to the diagnosis that's been brought in.
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And in addition to that, then you had asked the question about what is the school responsible for?
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What are we responsible for now?
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Insurance covers ABA at home and it covers speech OT and PT at home.
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And I know it's challenging to put together a program, like a it's like a whole other business for the child at home, like a homeschool.
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But what if they go to school till three and they need support at home, or if we can get something from the state as well to support in New Jersey, we have perform care.
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Every state has something where they support at home.
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Maximize the support, especially in the early years.
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Maximize what's available and find out what is available.
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I think that's really key.
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The school is responsible for if there's an outside diagnosis really adhering to what will support progress.
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If they have to make the determinations themselves, if they have the experience, if they have the team that's specializes in IDD and autism, well, then great.
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But that's something to look out for.
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Yeah, I think that's important.
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I appreciate you because I'm telling you, it was a different world 20 years ago when I brought my son in.
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I look at the support families can get now, and I'm so grateful for them to be able to get what they do.
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It makes all the difference in the world for a parent who already is thinking, am I doing enough?
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IEPs, they're filled with, you know, for those that don't know, an IEP is an individualized education plan because there's a lot of different alphabet soup when it comes to getting services.
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And so they're kind of filled with benchmarks and goals and data language.
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How should parents think about goals in a way that feels practical and meaningful, not just technical, and kind of educate themselves on the alphabet soup so that they know what they're actually reading?
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So we live now in an AI available world.
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I would take that IEP, maybe scrub it over the personal information and upload it and find out what it all means and how it all helps.
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I would leverage AI because I wouldn't have said that a year ago, but I would leverage AI at this juncture.
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Advocacy for the child takes a lot of effort, but also feeling comfort that there's a lot of resources available.
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Connecting with your child study team and saying, you know, just explain to me what is OT proposing, occupational therapy, what is speech proposing?
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And do they see that my child can't ask for their needs, you know, or they can't ask me to open a jar or get a cookie, or they get frustrated, just basic things that I have reported that I'm having trouble with on the day-to-day.
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Is this reflected in here?
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The developmental milestones when it comes to anything from communication to social to behavior.
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Where are these addressed within here?
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And the child study team lead really they're obligated to sit down and I would make that request.
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They're there for you.
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Make that request, sit down and go through it.
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These are my daily struggles, these are the challenges I'm seeing.
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Are they addressed?
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Sometimes it's a hundred-page document.
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It's a or a 50-page, or it's a big document to be able to sort through it can be overwhelming.
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So ask for that support and just read through each section to see what is occupational therapy doing, what is speech doing.
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And look for consistencies and inconsistencies.
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So if the applied behavior analysis team and the board certified behavior analyst from ABA, they're teaching the child bunny and speech is teaching the child rabbit, and the child has 10 words in their lexicon, well, maybe your child won't want to show up to work because they're just confused.
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It's just the nuances of inconsistencies.
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I think that's why we've developed Circothera, which is our platform for disabilities, care providers, and those who scenes so families don't have to.
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It flags and pinpoints those kinds of inconsistencies.
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However, that document should outline some of them.
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But one thing that we were very successful at in the program that won in the state was very simple.
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We met with the families once a month and we talked about these things and we shared our data across providers.
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OT, speech, ABA, they coordinated care more than once a month.
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We coordinated care on a regular basis.
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So ask about that.
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Ask about, you know, when you're reading that document, look for consistencies, inconsistencies, duplications that are not necessary or sometimes very necessary.
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Yeah, I think looking for those things, just consistency and consistency, duplication, and then following up on a regular basis with the team throughout the year.
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So that you can be consistent at home too.
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That's that's gonna help.
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That's really important.
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What I like about all of this is that the first letter of that is individualized, is that making sure it works for your family and your child, and not going, well, this is what works for everybody else, but really being able to kind of hone into that.
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Because I think that's one of the most important pieces that sometimes is forgotten is that it's supposed to be individualized to your child.
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So on the opposite side, though, because not look, there's the fact of the matter is that there's some really great school districts to do this and some other ones that are not, you know, we have a wild ride through the US of like what what schools do.
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If parents, and I've led parent groups where they feel frustrated at their IEP, they feel like they're not being heard, they feel like they're kind of doing an uphill battle with the school of what they see the need is compared to what the school sees the need as.
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So if they feel like they're outnumbered or intimidated or unsure of themselves in the IEP, what would you want them to understand about their role as a parent in the room?
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I remember walking into one of the IEP meetings.
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It was 15 of us and then the mom and the dad.
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How difficult.
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And some of the educators are tired and they've been there for too long, and they're just maybe don't have this, they've been it's almost normalized.
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But for the family, this is brand new and there it's overwhelming and it's challenging.
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You have some compassionate educators and some who are another day of the job and been doing this for 30 years, and they they're faced with all these different types of people in the same room.
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Just know that you know your child best.
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And it's it's a one and a half or two hour meeting, sometimes one.
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And the greatest thing that you can do is listen and hear what everyone's doing, have your list of questions ready, but take that document home.
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You're not under pressure.
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Okay?
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And everybody in special education at some point or another went into it because they care.
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Establishing those relationships from the very beginning with them, the ones who are ready to answer your questions or gonna hold your hand through it.
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Find the one or two or three or four in that room, and your child study team members should really be setting up some time to one-on-one go over those questions with you as well after the meeting.
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So go into that meeting, just know that this is not the final meeting.
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You don't have to sign then and there.
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Listen, ask your questions, take your documents, review them at home, ask for a follow-up meeting.
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You know, really take time to digest it, leverage the tools that we have in our technology world, maybe even bring in another professional to look at it with you.
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Because ultimately, if we know what is available to us, we don't have to feel overwhelmed or scared because it is a new world to navigate.
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And I would say I don't want to reduce how important it is.
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It is a very important document because it determines a whole year.
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So don't sign it quickly.
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Take that time because you wanted to address all the things.
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And if you feel like it's not enough OT or not enough ABN, not enough oversight, ask.
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And the other, I guess this is going to be a follow-up, and it's based on kind of what I've seen and heard again, the going to parent support groups, that type of thing, is for the families who have children who are higher functioning, just for different different functions at them.
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And because children meet different milestones at different times, and then suddenly, like mid-year, they do the review and they go, Yep, we're good.
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We don't this child doesn't need that anymore.
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How does the parent address that?
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That it that's fine, but it to step it down as opposed to like, nope, they're not going to get an aid last.
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That's kind of what happened to me.
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But I'm certainly not the only parent who's gone through that, is like they've met whatever milestone they are, because the school system's a little bit different.
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And going from having whatever the support is to none can cause regression too.
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So, how do families navigate like a step-down approach when the school is saying, nope, they've met all these milestones?
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I would want documentation.
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I would request to come in and visit and maybe even bring in a specialist to do a review.
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Because we used to invite parents in once a month.
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They would come in and see our data, they would come in and see what's going on in the classroom, they would come in and meet with us, and all those questions were answered.
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So ask the questions and ask for a transition that makes sense.
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So sometimes it's good news.
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However, it can, you know, if you take away resources too quickly, it confuses the child and it confuses everybody around the child and even their social groups, and it's just support.
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And those are supports that are in there.
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It's almost like taking away the crutches too soon when the leg hasn't healed.
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Well, the healing doesn't happen then, right?
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Then you have to go back and get surgery.
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We don't want that.
00:20:43.119 --> 00:20:45.519
So it's good news.
00:20:45.759 --> 00:20:51.039
So maybe it should be approached from a positive standpoint, but a very strategic plan.
00:20:51.519 --> 00:20:56.160
Instead of doing it right away, can we do this over the next six to 18 months?
00:20:56.480 --> 00:20:59.359
You're saying my child doesn't need a para and he's in second grade.
00:20:59.440 --> 00:21:06.319
Well, what's the harm in having it taken away at third grade when he's got the rest until 12th grade to be independent?
00:21:06.559 --> 00:21:07.839
Why do it in such a way?
00:21:08.000 --> 00:21:13.279
And why not do it in the morning or the afternoon when he is maybe in the afternoons he's more successful?
00:21:13.440 --> 00:21:15.839
The morning is more academic and he needs support.
00:21:16.000 --> 00:21:19.200
Whatever it might be, take a look at the day with them.
00:21:19.440 --> 00:21:21.599
Find out why they're proposing this.
00:21:22.400 --> 00:21:25.200
Ask the questions is it strategic?
00:21:25.680 --> 00:21:27.359
Is it a fading plan?
00:21:27.519 --> 00:21:30.559
Or is it a rip and replace type of situation?
00:21:30.799 --> 00:21:33.359
I don't ever recommend a rip and replace.
00:21:33.440 --> 00:21:34.400
I really never do.
00:21:34.559 --> 00:21:37.839
So just hone in on that and take your time.
00:21:37.920 --> 00:21:41.039
Again, you have 30 days to for New Jersey's 30 days.
00:21:41.119 --> 00:21:45.519
I don't want to say to blanket 30, but find out in your state how much time, what's the communication channel?
00:21:45.680 --> 00:21:46.640
What's expected?
00:21:46.799 --> 00:21:50.319
So if they're going to propose this, you have time to respond.
00:21:50.480 --> 00:21:53.920
They can't just do it without your consent, especially if it's in the IEP.
00:21:54.000 --> 00:21:55.119
That's your legal dog.
00:21:56.079 --> 00:21:59.680
You can say, I'm not consenting to this until I learn more, or thank you for.
00:22:00.240 --> 00:22:01.039
The great news.
00:22:01.680 --> 00:22:10.160
But before I consent, I'd like to ask some questions, really review if you're fading the para what time of day?
00:22:10.400 --> 00:22:11.839
Does he still need support at lunch?
00:22:11.920 --> 00:22:13.279
Is there going to be lunch buddies?
00:22:13.440 --> 00:22:16.319
Will the speech come in and support some of that?
00:22:18.720 --> 00:22:18.880
Yeah.
00:22:19.039 --> 00:22:26.640
Especially for those who have sensory issues, because like they may not need the classroom support, but what if they still need support when they do everything in the auditorium together?
00:22:26.960 --> 00:22:43.119
Like those type of little things where if you just yank that IEP, it's not that they may just need support in special areas where that could be part of the step-down program, too, which is really an important piece because kids function in different different crowds, different noise levels, all of that.
00:22:43.359 --> 00:22:45.519
I do want to say one thing before we move on.
00:22:45.759 --> 00:22:58.480
I have to say it takes a seasoned professional to work with children who are less severely impacted and have more nuances in their social skills and then their behaviors.