Planning and Setting Goals for Autism

Transcript for Podcast Episode: 112
Planning and Setting Goals for Autism
Hosted by: Dr. Mary Barbera

You're listening to the Turn Autism Around podcast episode number one hundred and twelve. Today, we are talking all about planning and how to ensure that the goals that might be in place for your child, our clients, are appropriate.

So before we get to that, for those of you that haven't found out yet, I am getting my second book published, Turn Autism Around, An Action Guide for Parents of Young Children with early signs of Autism. It is being published by Hay House at the end of March. But right now, you can preorder the book and you can also join our book launch team. If you go to TurnAutismAround.com has all the information about how to order and how to join our launch team. Part of that launch team means that you get some additional perks and bonuses, including a lot of behind the scenes from me. And you're going to help me promote the book so we can get the word out to as many people as possible. And you get early access right now. At the time of this recording, the launch team has gotten chapter one and they love it, parents and professionals. And I'm going to read you a little blurb from Deirde Darst, who is an SLP who was interviewed at episode number 39.

And she posted on our Facebook group, "After reading Chapter one. I can tell you one thing. This is the book I needed to read about six years ago. You could have been writing about me. The worry, denial, fear, guilt. You hit the nail on the head. Parents must be empowered to help their child because waiting just isn't an option. As an SLP, I'm constantly preaching that parents must become the therapist. My perspective has changed in the last year. I don't see myself treating children. I see my role as a coach teaching parents the why and how of intervention. And you spoke to this perfectly. Progress requires dedication and hard work. And I know that your book is going to equip so many families." So that, again, is Deidra Darst from episode number thirty-nine. She just posted that after reading Chapter one and I loved it. So I asked her if I could read that and she said, sure. So today is a solo show. I am going to go over planning and goal selection. I know that sounds boring, but it's not and it's super, super important. So let's get to it.

Hi, I'm Dr. Mary Barbera. Welcome back to another episode of the Turn Autism Around podcast. Today, we are talking all about goals and how to make a plan based on your assessment. And for those of you that haven't listened yet, I did a whole episode on assessment, and that is podcast number 108. You may want to listen to that first or listen to that later, whatever suits you, but we will be tying these two together. So one of the biggest mistakes I see parents and professionals make is simply working on the wrong things in the wrong order or even the right things, but in the wrong order. This is often the result of having a plan and goals that are kind of cookie cutter ish. Is that a word? I don't even know. But they're taken from banks of goals and the goals are just not individualized enough and based on the child's assessment.

So I have a whole chapter in the autism around book on planning and goal selection as well as that chapter also includes some talk about how to gather materials, what materials you can gather. And we recently developed a materials checklist with links to buy supplies directly through Amazon. And you can find that at MaryBarbera.com/materials. And I'll also link that in the show notes. So in my book I talk about Lucas before he was diagnosed with autism, when he was two years old, he started preschool. And then he also started some speech and language therapy sessions at the local hospital.

And I actually had a decent background in developing goals and goal selection because I was a registered nurse and I also worked in the rehab setting and in neurology. So especially when I worked in a rehab setting, we had, you know, multidisciplinary goals because we'd have patients who have had headend. Stroke, spinal cord injuries, and we would have the nurse myself, we'd have physical therapists, occupational therapists, speech therapists, so there were all a bunch of goals and we would meet weekly to develop the goal, to fine tune the goals. And in terms of did they make the goal for the week and were they going to stay for one more week, four more weeks in rehab? So basically, wherever you're living around the world and you might not have IEPs or if Aspies or specific things like that, like we do in the United States.

But wherever you are listening from, if an insurance company or school district or someone else is paying for some kind of therapy, whether that just be speech therapy like it was for Lucas early on or whether that's a full ABA full time clinic setting or a school, wherever you're going, wherever your child's going, if someone is paying for the services, you will have an assessment, you will have a plan and you will have goals, because that's just the way it goes. You know, if you're going to put money on to something, you're going to have to prove that the child is behind and then you're going to have to keep an eye on things. Because is the child catching up or is this therapy working in those sorts of things? So while goal selection sounds like it's all like a very dull topic, it really is not.

So back when Lucas was just two and going to speech and language therapy sessions, I don't remember looking at the goals and thinking like this is way off. But it was the first part of the session and I'd always watch either through a two way glass or I'd be in the room if I didn't have my younger son Spencer along. But whenever I watched the beginning part of of the speech sessions looked like bubbles and she'd put the bubble cap on tight and then she'd say, bubble, bubble. And Lucas had what I've coined as pop out words. So he would usually say bubbles. And she would open the bubbles, she'd blow the bubbles. She might model open, he might say open. And he liked that session. He liked that part of the session. It wasn't always bubbles. Sometimes it was a different cause and effect toy, but it was something that had Lucas had high motivation. It was a manding kind of session, if you will, if you know what that is, is basically the child has motivation and he could request even by gesturing by sign language, by reaching up, by smiling.

Those are all can be considered mands. And so that part of the session went well. But then she would pull out the speech therapist would pull out other things and she would work on things like some verses, all verses, none, like little piles of things. And she'd say, give me some verses, give me a few. Give me all of them. And he had no idea. So he was just grabbing piles and he was getting them wrong. You know, she also did something where she'd take a pile of pictures and there'd be like maybe five Apple pictures in the in the deck and then other things like a bed and a shoe and an apple. And so a lot of apples and other things. And she would hold up this one at a time and she'd say, is this an apple?

And then Lucas would either have to shake his head or say yes or no. And then she'd hold up the next picture, say this was a shoe, and she'd say, is this an apple? And that was not going anywhere. I mean, every time she pulled out these pictures of things and asked basically she was asking for yes. No tacting, which was a skill he didn't have for, I want to say, six or eight more years until I figured out how to teach him that.

I mean, it is a very hard skill, some versus all versus one versus few. That is a quantity goal. That is way, way, way too hard for a child who is not speaking. I had no idea how to get him to speak. I mean, was just very, very hard. So that's one example where the goals were not appropriate. I remember also he had a goal for him to undress another occupational therapy, go to him for him to undress and for him to dress. And I remember saying, like, this undressing goal is not appropriate because that actually became a problem behavior with Lucas. Before he was diagnosed, I would turn my back, he would strip down. So there's another example where people, well-meaning professionals, were pulling from some gold deck and they were like, well, undressing is a goal and dressing's a goal. And we'll put both of those goals in. But for Lucas. Undressing, he was like a little Houdini, he would undress very quickly. Here's another example of where goals were not appropriate.

And then I'm going to tell you how to get make sure your goals are appropriate. So hang in there with me. OK, so we have Brentley who's Kelsey's older son. And Kelsey is our community manager within our online courses and Kelsey is featured in podcast number three. We'll link that in the show notes. But whenever I say podcast thirty-nine for Deidra or Kelsey's number three, you can always find those podcast episodes at Mary Barbara dot com forward slash three for Kelsey, forward slash thirty nine for Deidra. So Kelsey's son Brentley. Before she found my online course, he was banging his head. He was running away from her towards water, into streets literally. She reported that he ran out of the ABA clinic and ran into the street, ran three blocks down with her with her baby on within a front pack and her running through the streets trying to get him before he got hit by a car. I mean, obviously just a horrendous situation, banging his head on hard surfaces and her driving an hour each way to the clinic.

And they were working on things, which means there was a goal. They were working on things like colors and for child with these safety concerns, with no ability to man for things, obviously not the right situation.

And then one more example. If you have an older child or client, I had a 10-year-old, he wasn't really a client, but I had done a few assessments on him and he would only sit on the couch to eat all three meals, any snacks he would insist on, on having full access to the TV, the DVD with the remote and eating on the sofa. He also had problem behaviors around washing his hands. He whined and cried when called to the learning table. Yet the school was working on increasing length of utterance, making sure he had more sentences which were not appropriate. They were working on things like prepositions and pronouns and really just trying to plow through those intermediate programs without worrying about functional skills, eating with his family, not whining, having wanting to be at the learning table, reinforcing the spontaneous one to word utterance, mands, all kinds of things that just headed in the wrong direction.

As I said, podcast number 108, we talk all about assessment. And assessment is the first step of the Turn Autism Around approach. And the second step of the Turn Autism Around approach is planning. And with planning, you have to make sure the goals are appropriate. So anything you're working on needs a goal and it has to be in the plan. So I have a one page assessment in the book and a one page plan in the book. And that's really where I would start with the one-page assessments which each the assessment and the plan should each only take you about ten minutes. You'll need the one-page assessment done first. And I also recommend the self-care checklist which and the intro verbal subtests, both of which were created by Dr. Mark Sundberg. I explain all of that in podcast number 108.

But the one-page assessment has three columns. The left-hand column has things like age diagnosis, allergies, services the child is getting. And then we start talking about safety. Do they have safety awareness or are they like Brentley where they run into the street or into the water? How do they sleep? How is their feeding? Are they drinking out of a bottle or are they addicted to a pacifier? Then we talk about we assess potty training and then we get into language, mands, tacts, intraverbals, echoics. And then some of the non-verbal skills, like imitation, matching, social skills is obviously a verbal skill. And then we also on that one-page assessment form, ask about problem behaviors. So if you go down the first column of that one page assessment, the first place we usually have to stop and consider is safety.

And safety is usually the first area, which is either a strength which is unusual or need. So as soon as we get to the first spot of safety, we take our planning form and we put it in the need column. So with Brentley, we have a need. With Lucas. He yeah, he had a lot of wandering behavior when he was little, so that definitely would have been a need as well. OK, so then we continue to go down and then we get to sleep and they either are sleeping well and the. Our own bed through the night or not. And so that's either a strength or a need there, either when you get to the feeding Part three, either eating a variety of foods and using utensils. And there's no problem with consistency or the sight of food or them eating at the table or in more cases than not, there's big needs in that area as well. And so we take the planning for we take the assessment form and we literally just go down the columns and we either put it on our planning form as a strength or a need.

The other thing to really keep in mind when we're trying to determine strengths or needs and I mentioned this a little bit in the assessment podcast as well, is that we also have to think about the age of the child and what do typical milestones look like. And we always want to work on getting, you know, the 18-month milestones mastered before we worry about the 30 month or the 48-month milestones. So looking at the CDC Act Early website, which we can link in the show notes to determine milestone wise where your child should be, and even if they're older, are they still very much maybe functioning at a one to five year old level?

That's why my new book, Autism Around, is written for parents of one- to five-year-old chronologic age, real age or developmental age. And so many teens or adults with more severe autism and intellectual disabilities will benefit from the book as well. I know I talked a lot about the one-page assessment and the one-page plan, and that's really where I would start. I also really like the VB-MAPP if you have a professional that's able to use that. But if you're a parent and you're just getting started, then I think the one-page assessment and the one-page plan will be really where you should start, where you should mostly focus, because there's a lot you can do to really kind of focus on the whole farse, the whole picture. OK, so he's three. And we're not just focusing on language. We're focus on problem behaviors. We're focusing on social skills. We're focusing on leisure skills. We're focusing on feeding and sleep and potty training, going to the doctors and dentists and looking at the whole child and the whole family and their goals as well.

So make sure you look at the milestones and pick people, say, well, I don't want to look because I have a four year old and I know they're functioning like a 12 month old level. That's so depressing. I don't even want to look. And it's like, well, it's important that you look because if you don't know that they're functioning a 12-month-old level socially, for instance, or language wise, then it's going to be a lot harder to detect if professionals are making goals or you're you know, you're putting the child in daycare for socialization with other four year olds, yet they're functioning socially at a 12 month old level. And that's the kind of thing that I think knowledge is power. And just really that's why I'm so excited to get about getting my book out to the world, because it really is very straightforward with lots and lots of examples and lots and lots of stories of kids that have made great strides because the parents and professionals that know and work with them and love them, families and professionals are able to really focus on the right things. So we take the plan, which is basically your child's strengths and the child's needs, both in two separate columns.

And then we really say, OK, what are our priorities? OK, newly turned three-year-old can't speak. You know, is addicted to a bottle, doesn't like any mushy foods, doesn't sleep through the night, you know, bangs her head or runs out the door. So we're not focusing on potty training for a child who's three or four, but has all of these other, you know, really significant safety needs or significant problem behaviors. And we can make a lot of headway just with working on the right things in the right order. And make sure if you do, which I really advocate for and it's throughout my book is to use Dr. Mark Sandburg's health care checklist, which includes four parts.

He's given us permission to use them throughout the book. And if you are going to use the self-care checklist to make sure you focus on, like I said, the earlier skills first. You know, the drinking out of an open cup and a straw, for instance, those are 18 month skills in the feeding area. So we're not working on utensils before they can drink out of an open cup and drink through a straw. And many times those skills will also help with talking and oral motor skills. I have a really great podcast interview with Dr Keith Williams, who's an author and a behavior analyst and an international feeding expert. And that is episode number ninety-five as well.

OK, so we don't want to make a plan that includes goals or programs that are too high. You know that the child has no chance of meeting or mastering. They should not be. Lucas', when he was two, should not have been working. One, put the corn chip next to the bed of the dollhouse or whatever they were doing. He should definitely not have been working on. Is this an apple versus is this a shoe? Those programs were way too hard. Brentley should not have been working on colors when he was running out the clinic doors into the street. So it just makes sense that we have to work on the things that are going to be create the child to be as safe as possible. No one as independent as possible, number two, and then as happy as possible. Number three, we want to use that one-page assessment as a guide to create the one-page plan. And we want to make sure that the goals are all appropriate, individualized, that they focus not just on language, but we focus on goals for reduction of problem behaviors and we focus on goals for increase in self-care skills.

And the other thing I would caution you on is if you have, you know, an hour about whether that's at the hospital or they're coming into your home, make sure that the OT is teaching you, the family or you the paraprofessional, how to work on those goals throughout the week because those kind of goals of self-care, dressing, pulling up pants, pulling down pants for potty training, washing hands have to be done every single day in order for there to be progress. And they have to be done in the right way so that the child does not get confused. If your child is not yet asking for things they want, mandating planning for them to identify colors, used pronouns, prepositions, those goals should not be on the form. And if they are that, does it mean the professionals that are working with your child are bad or not? Well, meaning it just means that we just need to step back. And hopefully if you join my launch team, you'll get my book even sooner and you can make sure that the professionals and you are on the same page and work with them to make sure that the goals are adjusted.

I also would really question, and I would not want in my child's IEP or goals is any goals to increase eye contact. We do increase eye contact naturally by holding things to our face, becoming fun, making sure the child or clients want to be with us. But I am not into goals for eye contact. I'm also against goals that really push increased length of utterances. And I, I said that earlier. I believe that I have a video blog on why is it a problem for Timmy to have the goal of four-word utterances so we can link that in the show notes as well, make sure there are goals not just for language, but for decreasing problem behavior and for increasing self-help skills, because the child really has a lot of areas of need usually in those areas.

And it's very common for me to see plans and they're not to be any goals for problem behavior reduction. And I think that's a problem, because if a child has problem behaviors or cries with different foods or is addicted to the pacifier or needs to hoard things and keep things in their hands all the time, then those are going to get in the way of learning and doing things and all kinds of things. So I would really encourage you to look at the whole child and make a whole comprehensive plan. Yet it's easy. It's on one page, just a one-page snapshot of an assessment and a plan. And I think it's really going to change the way kids with autism and signs of autism and other developmental delays make progress, because I think if we're all on the same page and we're all individualizing their treatment in an easy way, we'll see progress. So in summary, even the most well-meaning parents and professionals make these mistakes. I know I made these mistakes constantly when Lucas was little, you can be too focused like I was on the trees, on getting Lucas to speak more or increasing utterances, to focus on the trees and not looking back and taking a step back and looking at the whole forest, looking at the whole picture of what each child needs.

So take a step back, assess what is most important, and make your one page plan starting today. So we're going to link the one page plan, one page assessment materials checklist and all the resources that I told you about. I do think and I hope that you will see how important it is to look at reexamine any goals that are in place and make sure that you're making progress by having every goal based on your child's current strengths and needs. Don't forget to preorder the Turn Autism Around approach book today and join our launch team at Turn Autism Around dot com. I'll talk to you next week.