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Life Planning - Finding Direction

Added Jan 22, 2025 •

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thank you very much welcome everybody I appreciate you being here and spending time with me this evening I understand that we have a blended audience so I'm going to be trying to give examples for all ages and all um circumstances recognizing that when we are dealing with life planning for an individual with a disability there are an unimaginable number of possibilities as far as the individual's capacity their Direction the support that are available to the families there are a lot of different circumstances obviously I'm not going to be able to speak to all of them but I'm going to try and give an overview that is going to be helpful to the majority thank you for allowing me the opportunity as Regina mentioned I am the life planning specialist listed home of guiding hands I um facilitate life planning workshops for families that go into quite a bit of detail but tonight I'm going to be providing a summary and an overview and when I think about life planning and the workshops that I do to me the big thing for families the really challenging thing is what am I trying to plan for without knowing what we're trying to aim for it's really difficult to chart a course to reach it so tonight I've titled my presentation and life planning finding direction because that really is the first step in an effective life plan is to know what you're trying to achieve there we go so you may be starting from 1 of a number of different places in your life many times when I have parents join the life planning workshop series I see them come in feeling very uncertain um that could be just a function of my child is nonverbal doesn't have the ability to share their thoughts with me um I I don't know how to interpret their actions I'm not sure what their capacity is going to be and how do I make an effective plan when so much is unknown um some families come and they're very overwhelmed it is a struggle just to make it through a day they feel like they're being asked a thousand and 1 questions they're being asked for explanations that they don't necessarily have they feel that every time they turn around there's another Demand Being placed on them and the idea of adding something that's so far in the future to what it feels like a very full plate already can be absolutely beyond their capacity um some families come in and they're struggling they are really hard pressed to make it through a single day um certainly in my own experience and I will mention I am also the parent of a child with special needs I've been a professional in the field since before my son was born having that professional background has been both a blessing and a challenge because I know a lot about the system I have realistic expectations and at the same time none of that is personal so personally as a mom I very much relate to the idea of struggling there were certainly times when my son was younger that I would be struggling to make it through a single day I was planning to make it to bedtime when we could start the bedtime routine and we were only maybe 2 2 and a half hours from my I have to get 2 Sons from both boys being asleep that was like the time I was aiming for and sometimes I started aiming for bedtime at 10:00 in the morning because the struggle was real um other families join me and they're Treading Water things are okay there's not a big welcome um there's not a big issue but at the same time it's costing effort to stay in that static place and we're not necessarily sure where else we're going to go from that point and some families quite honestly just feel like they're surviving they're in survival mode and that's you know these are all places of challenge these are all places of struggle these are all places that families are looking for Solutions that's not where everybody comes from sometimes families are okay things are in a fairly stable place we have supports that are working for us we have Therapies in place my child is happy with their teacher they have a couple of peers that they don't necessarily get into fights with all the time and it feels like right now we're in a fairly good stable place so I'm appreciating the consistency that I wake up and I know what the plan is every day we have really well established routines that help us navigate some of the stickier points that we've had in our our days um we have structure there are guidelines there are expectations it's predictable my son wakes up and this is certainly the case for my son my son very much needs to know what's going to happen so he wakes up every day and asks what's the plan today and the plan might be the same as it was yesterday but we still have to go through step by step by step what time the bus is coming what we're going to have to eat where we're going to go what we're going to do 1 we're going to go to bed all of the things of the day and throughout the day I will get my kind of play-by-play we've already done these 3 things and next we're going to do those 4 things and at the end of the night we get the whole recap of the full day and then we talk about what's going to happen the next day because my son needs things to be productive he needs to know what to expect and that's a very stable place for us sometimes we're in a coasting and it's a very soothing place we have kind of figured out how to avoid some of the big challenges and the big potholes are no longer like throwing us off for the entire day and when we're in that stable place when we feel like we've had some struggles but we've overcome some of them we we tend to fall into the problem the the state of things are okay right now let's not rock the boat why borrow trouble why try to change anything and this is a very easy feeling to fall into and it can absolutely turn into a problem when it comes to the idea of future planning because if we're very happy with it where things are right now we want to try and preserve that and unfortunately for us the only constant in life is change there's no way to just freeze this good moment and keep us here and that's also the good thing for those of you that are struggling and feeling overwhelmed and constantly kind of challenged it's going to change I'm not saying in what direction but change is change is going to happen um and we are powerless to prevent change every moment that we are alive and experiencing the world around us it's making an impact on us and our experiences shape how we approach new situations they shape how we respond to expectations and we are constantly in that evolutionary as are our children so the idea of planning is very challenging because we can't have an expectation that they're going to be static and what we see today is always going to be their reality so there is an automatic kind of built-in I'm going to make a plan I'm going to have a Direction but I can't set it in concrete I can't chisel into the stone because there's going to be too much variation because life is going to change so even if it's a very subtle way there is change happening and that is 1 of the most beautiful and and Powerful things to recognize about our children that even when it seems like they're exactly the same day after day after day we wake up and we have the routines and we follow the schedule and we have the conversations they are still shifting they are still being influenced by the events in their life and we have the opportunity to be witnessed to that and also to take advantage of that and help choose some of the directions and some of the experiences to help shape them toward that desire our future once we decide that what once we decide what it's going to be but just staying where we are today is really not an option that's not going to happen so when we really talk about doing life planning 1 of the fundamentals is that life planning accepts change we don't try and fight against it we don't try to ignore it we don't try and bury our head in the sand and say you know oh if we could only go back to yesterday we recognize that change is inevitable and instead of trying to cling to what right is right now we look forward from where we are now and imagine what might be and that is for some people really overwhelming to think 20 years from now what is life going to look like and and sometimes we have to sit in the discomfort in order to be able to move forward and anything that we start as far as life planning I just want to take a moment and I know there are many of you out there on screen and I just want to make sure that I I validate that this is not always an easy thing to do emotionally there are a lot of feelings that come up when we start thinking about the future changes that we may not be comfortable with changes that might be challenging to us and when we begin the process I really want you to take a deep breath I'm going to take 1 with you for just a moment and recognize that anything I think about now is not going to happen without action so my thoughts don't carry power power even though they bring up emotions even though they can feel overwhelming just thinking about something doesn't make it a problem so when we start imagining what the future could be that's when we begin to ask questions and think about options and explore possibilities and as I I mentioned I have now 32 year old son with disabilities and we came to California when he was 3 years old and became involved in the in the system and it was just the very beginning of person-centered planning my very first experience with planning in California was a 2 and a half hour meeting for our 3 year old and I was like wow these people take it seriously that's that's a lot of in-depth conversation um it didn't continue that way in my experience it it got a lot more concise but it was a very detailed beginning because they needed a lot of Baseline information about my son they asked for it 3 months to what I thought was going to be our next quarterly and I walked into a meeting full of professionals and they basically said we think you need to look at non-public school options and I said I'm not quite ready to do that yet I think there are things I want you guys to do they didn't necessarily realize that they had a professional in the room as a parent that changes things a little bit but from the very beginning what my expectations were oh we're in a new state we have a new system we have a new school we have new teachers I'm in constant conversation with them and then the reality of oh here's a meeting and I'm being asked to make a complete 180 and do something very different with my son change is going to happen and what we can do is ask questions consider options and explore possibilities in that circumstance I compromised I said I will go look at some non-public school options in the meantime I want you guys to try these things that I recommend that I found successful in our home environment and we each kind of went to our separate corners and I did some um site visits for non-public options and they tried some of the things that I had suggested in the school system and eventually we realized like yeah you really guys really can't do this with my son here he he my son is what they call an outlier he's at the very extreme end of the spectrum um and it is definitely something that we have been through change changes that were involuntary on our part and as parents when we think we have a plan and we think we have a path and all of a sudden we're diverted and there's a a detour it can feel very challenging it can overwhelming and that's when it's very helpful to have that desired future as a goal and we know that okay we may have to take a detour we may have to take a little bit of a couple of left-hand turns to get back on our path but I know what I'm trying to achieve I know what I'm aiming for and that's where it becomes very helpful to have a plan so how do we start where is our beginning Point um the best and most effective path forward Begins by clarifying a desired future and finding a focus this can be challenging particularly for parents who have very young children I'm not sure what they're going to grow up to be if my child is 4 5 6 7 I might still be working on potty training so thinking about what their future is going to be when they're 35 is a little bit beyond what I'm willing to focus on right now but I do know that I want my child to be happy I want them to be well cared for I want them to feel valued and heard and understood those things I can plan for those things I can set as an intention so that might be the focus that I have when I'm not sure what skills my child is going to develop I don't know when they're going to have verbal communication if ever I'm not sure when they're going to handle Transitions and changes more effectively my son was I want to say 11 the first time we said not now maybe later and he said okay and my husband and I were like did you hear that he said okay it's okay he didn't have a he's in the back of the car and he's not kicking the seats because we said no to something this is fantastic there was a moment where things that we had been trying changed and was wonderful to have that moment of recognition that it wasn't always going to be a challenge when we couldn't say yes to everything that we weren't always going to have to be worried about safety if he got upset in a public setting um but knowing what we were aiming for didn't change and hasn't changed some of those big emotional pieces are very much still a a factor in our lives what my son brings to the table is what has changed some of the details so when we think about that desired future sometimes it starts by being a process of elimination if I'm not sure what my child's capacity is going to be I'm not sure where their skill set I'm not sure what they're really interested in yet because they're not able to tell me or they're very young and it changes um when my son was little we called it the year of we had a year that he would be absolutely fixated on something and then it was like overnight he just decided to stop we had the year of the sock when all of his toys had to be shoved into a sock he really liked his dad's socks because they were bigger and he could get more stuff in them we had the year of the fence where everything went over the fence we had there were there were years of all different kinds of things um but he had different focuses so we didn't necessarily know what was going to really stick and what he was going to continue to be enthusiastic about so we couldn't necessarily plan like oh this is going to be his career because he's so clearly going down on this path but we could identify what we didn't want and sometimes when we're not sure what that big positive picture is going to be we start from knowing what we want to avoid I don't want my son to feel overwhelmed I don't want him to feel invisible I don't want him to feel um unhappy in his day-to-day routine I don't want him to feel like everybody's out to get him those are are are feelings but they could be more specific actions or environments or types of interactions but we start by eliminating what we don't want and then we can kind of get to what does bring peace what does bring positivity what does bring clear Clarity for us um so what I'm talking about right now is the very Basics when we are starting to think about life planning we have to have some idea of what that desired future looks like even in the broadest possible terms we want to have something to aim for because if I'm just like oh yeah he'll grow up someday and oh well I'm not getting any preparation I'm not moving consciously in any direction but if I say you know I'm not sure exactly what it's going to look like but I know I want him to be happy at least I have a state of mind that I'm shooting for and everything is going to be measured against that is it going to make him happy or is it going to be challenging for him and if it's going to be a challenge but has the potential to make him happy maybe that's okay to be challenged because life is about change and challenge brings change but I have to have some idea of what I'm looking toward I also have to recognize where I am right now in current circumstance if my son is 6 years old and just starting elementary school and getting connected to some speech therapy and some occupational therapy and maybe a blend of um special ed and classroom time and we're not sure how he's going to respond to any of that that's our current circumstance and there are a lot of questions and maybe I'd look at all of the things that I've been doing with my son and I'm thinking about how much potential he might have and that's going to have an impact on the desired feature but I can't say like oh he loves to play with puzzles and numbers so he's going to be an accountant and we start planning the the future for him to go into more math classes and you know get some extra curriculars on in that area and that's going to be the future and that's what we've decided and it's set in concrete I can say he likes numbers let's see where that takes us because my ultimate goal is for him to be happy to have work that he enjoys to feel that he offers value so we can look at more activities that our number focused we can play more games where there is counting involved we might incorporate some cards and and activities that we have to count and keep track and do some beginning multiplication and you know we'll see how how fascinated he is with numbers maybe I just misinterpreted that but my interpretation of the current circumstances that my son loves numbers so if I have this desired future and maybe my son is a little bit older maybe he's 12 maybe he's 13 and he's talking about his own desired future and he's starting to put some language to that but the desired future that he's talking about I really kind of question because what he's doing in the day-to-day you know I am behind him 95% of the time did he put the 2 back on the toothpaste did the lid back on the toothpaste did he lifts the and lower the lead the seat in the in the toilet did he remember to put on deodorant before he got dressed did he put his clothes on the right way did he any 1 of a number of things and every time I'm checking he's going back to the bathroom to wash his hands he's going back in the bathroom to turn off the light he's going back into his bedroom to put his shoes in the closet because these are things that he does not do without me reminding him and yet he has these really aspirational goals that he's going to earn a good check and he's going to maybe have his own apartment and support record himself and he can't wait till he has his driver's license and as I'm following him around reminding him to pick up his sneakers the idea of him with the driver's license on the freeways that I'm driving feels a little scary so I have to find the bridge between what he is doing right now and what that desired future looks like and if he is giving me input into his desired future that is my opportunity to help him recognize that his efforts today are going to lead him toward that desired future so when we talk about the bridge between the current circumstances and desired Futures 1 of the biggest things that you really need to do is start thinking about what are the foundational skills that are involved in what my child sees is that Preferred Future or that I think of when I think about that Preferred Future and where are we starting now and what little change can we make in expectations in teaching and approach today that will lay a brick along the path toward that desired future now and it may not be a straight line it may not be linear at all it may be we decide you know what we're not really going to go to that desired future because we've realized like there's a giant roadblock um I has up in that long since on the 78 they had that giant sinkhole and they had detours on the freeway for months if I had been driving down I couldn't just park my car and say well sooner or later I'll be able to go that way again I had to find a different direction I might be able to Circle back and get back on the exact path I might go a completely different way but I have to recognize that it's you know just sitting there and saying I'm going to wait till it's fixed was not an option in that circumstance so looking at our current circumstances and where our skills are right now and saying it's so far and I see so many things that have to happen before that desired future is going to be possible I'm just going to wait it'll happen probably want to take some different steps we want to take some actions and think about what could we lay as a foundation so if my child is very interested in something as a future that involves interacting with people and yet they struggle with eye contact and finding words and communicating effectively they have to recognize if you want to be a sales because you like or this is a popular 1 right now I hear about this from a lot of parents my child wants to be an influencer I'm not even sure I know what that is but that's now evidently a profession and a lot of kids are like I'm gonna be in influencer because they see people online doing it and they're like oh they're just in front of the camera okay what what qualities do influencers have well first of all they have the ability to speak and communicate with other people and that's something that you tend to be kind of struggling with a little bit that's something that doesn't come as easily or as naturally so if you really want to be an influencer what can we start doing now that is going to give you a chance to start building some of those skills and increase your Comfort talking to people maybe during dinner we have a topic or we have a bowl full of topics and we pull out a piece of paper and everybody has to say whatever they might know about whatever's on their piece of paper and everybody in the family participates so it's not just the person with a disability that's always in the spotlight but everybody gets a chance to participate and they get a chance to build a skill and improve in an area that is directly related to what they see as their desired future if I said to my son uh you are so Charming and he is I have a very Charming son you are so Charming I think you would be an excellent influencer so I think we really need to work on communication and for my son it's all about throwing the ball and hitting the the hoop when he shoots baskets and he could care less about talking to people and influencing people I can try all kinds of activities to increase his ability to express his ideas and it's not going to get anywhere because he doesn't see any purpose to it because it's not in line with what he sees as his desired future so it is up to me to find a bridge and a way to explain it that's going to get him on board so if he wants to be an influencer he will put himself through discomfort in the present to improve his communication skills because I have shown him how that directly relates to what he wants as his desired future so we have to have some kind of idea of what we're aiming for and then we have to have a recognition of where we are in the current stat status and start looking at what foundational skills can we start with to see if that takes us along the path toward that desired future and sometimes the bridge you get halfway across the bridge and you realize like oh we've run out of wire we've run out of materials and I don't think that that is our future we have to backtrack a little bit and find a different direction and it might be in the same vicinity we're still heading east but not toward that specific Town anymore and that's part of the process of Life planning is recognizing that sometimes there are adjustments that happen so in the present as we're evaluating we look at what is working well what goes really well is your child moving automatically through certain routines do they build up expect patients that they are not needing as much support that would be something to look at and say you know where are they making the most progress what's the easiest for them to master that something that we want to work with um what are their strengths the things that they're really good at the things that they're very capable of I will say from very young age my son had excellent aim not always in the good way but if he wanted to shoot a basket he could shoot the basket he loved the special Olympic sports that had evolved throwing but if he was mad at me and he wanted to beat me with something I got hit by quite a few toys too but his aim was a strength he had good I I hand coordination look at the strengths even when they don't feel like strengths look at those capacities and see what what else could they be used to do what else could they enhance what is motivating as I mentioned if you can find the key to help your child feel like this is something they want once they're motivated their ability to learn and develop and and shine becomes just astronomically better because they will apply themselves if it doesn't matter to them if they don't see the point if they're not really enthusiastic you can spend your days beating your head against the same brick wall and running the same activities and and trying to figure out like why they're just not willing to learn it because it feels like sometimes they're they're just determined not to help you help them but once you figure out what is motivating or how to explain it um that that can be really different uh my son for the longest time and and this is kind of adjacent to this this point but I think it's an example that people would will understand and kind of chuckle about my son worked on crossing the street safely as a skill for about 6 years and made absolutely no progress he loved to go out he loved to be in the community but he could not safely he could not accurately identify when it was safe to cross the street and they worked with him they had programs they took him out a couple times a week every single week and they just weren't getting anywhere and eventually I I was like you know we don't seem to have that same problem so what are you doing differently because he would he would kind of mirror back our our language and what I discovered was that in his program he was being asked if he saw any cars he was looking both ways and do you see any cars and I asked them when I I had them tell me like step by step with the the program was I said are there cars parked on the street and they said well yeah but they're not moving I said well that's not what you're asking him whether they're moving or not you're asking him there are cars and he sees cars so of course he's not going to go how about we identify that it is safe when no cars are moving and you ask him if it's safe instead of if he sees cars and they made that tiny shift and put it in language that made sense to him and within 3 weeks he mastered the skill after working on it for 6 years with no progress when they put it in language that he found relevant he was able to absorb and and move forward with the information and sometimes it's the same with motivating you know if I just say this is the activity and I don't give any context I don't explain why it's important or what they're going to get out of it they could take her to leave it but if I identify here's the activity and I think it's really going to help you do XYZ and that's on the path to what you have identified as your Preferred Future or something that you talk about all the time and this is going to help you do that more effectively or better all of a sudden they're applying themselves and now I have to encourage them to stop you've been at that for 2 hours let's take a break they're like no I almost got it they've developed an ability to focus and develop their own ability and their own intentionality once we identify what they have in as a benefit what's what are they going to get out of it that's what we really have when we're talking about what's motivating you have to think about your child and say what will they think is the most important part of this what are they going to get out out of it that makes it worth it to them that's what we're talking about when it's motivation what environment do they favor particularly if you have a child on the Spectrum chances are they have some kind of sensory issue whether they don't really pay attention to sensory input or hyper sensitive sensory input for some people it's about how bright it is for some people it's how loud it is how crowded it is there can be a lot of different sensitivities but generally speaking as parents we are very attuned to our child's body language and we can identify when they just relax and we take a look around and we recognize like oh when we dim the lights for the movie I could just hear my child's side and relief maybe they don't like it when it's too bright so I'm just going to go around and I'm going to lower the dimmer maybe 5% and see if that makes a difference to their mood and I run the experiment I realize like wow they really don't like super bright environments you know I I've been working at home of guiding hands for 28 years and for about 10 years the first 10 years that I was with them I was a supervisor for a residential program and I would tell the staff if you have somebody who doesn't like crowds and doesn't like loud noises don't buy them a ticket to the Giant Truck Rally don't take them to a rock concert if you know that they don't like it when it's loud and it's crowded let's not put them in that environment it's the same thing when we're planting the future for our children if we know certain environments are challenged for them we but we hope that they grow out of it we have to give them an opportunity to desensitize to that and that takes it in small portions we don't just toss them in the deep end that has never been an effective way to build skills for people with disabilities in my experience um the same thing can be said with tone what kind of tone is effective do they do best if they have people who speak more slowly more quietly with a lot of enthusiasm and encouragement or do they do best with its straight by the book and this is what has to happen and we're just going to stick to the facts and I'm not going to waste too much of your time because they just want to get to the essential part that tone is effective for them because then they know or are they somebody that's like the less you say absolutely the better they don't want to cheerleader they don't want anybody laying it out if I can give it to them and pictures are on a list that's absolutely going to be so much better you know how your child receives information and then what choices are preferred if you are not already offering choices to your child at every possible opportunity that is the 1 thing that I want you to walk away from this presentation and start to do even when you know the answer even when you are 100% positive what the answer is going to be allow your child to tell you ask them the question it might be a yes or no question do you want spaghetti yes or no it might be in either or do you want spaghetti or do you want lasagna give them 2 choices if they have the capacity to be a little bit broader what do you want and don't give them choices let them identify what they interpret from that question choices can come in a lot of varieties the important thing is you are asking your child you are not presuming you are not imposing your will you are giving them choices and helping them develop the muscle of self-advocacy when they answer the question and say this is what I want this is my preference right now they are starting to learn how to speak up for themselves and when you in that safe environment give them choices that all have acceptable answers you are teaching them that their answers are going to be respected and that is foundational to an effective Life Plan if they can never feel comfortable and confident giving input because they've never had that skill developed you are going to have a really hard time figuring out what's going to make them happy and fulfilled so offer choices and then you start to see a pattern to what kinds of choices there always choosing my son in a very surprising turn of events is tremendously social he will always choose the place that has more people because he likes to see a lot of people he doesn't have conversations with them he doesn't want to stand there and talk to them but he wants to see them and he wants to walk by them and say hello hello hi and keep moving but he is very social and he will always choose a place where he can see lots of people that's a choice that I only started to recognize when we started offering choices and he started to put together like oh there are a lot more people at the zoo than when we go for a walk at the in around the neighborhood you know we might see 1 or 2 neighbors that he can say hello to but at the zoo there are thousands of people walking and he can say hello to a lot of them and he does and he gets about a 70% return that people say hello and when he walks by he goes hello he always makes a point of being on my left hand side so his left hand is up and as people are coming the other way about 1 in every 15 people give him a high 5 and then that absolutely makes it like yes that that's his favorite thing but what are their choices what are the things that they prefer these are things that you have the power to figure out now and what you get is answers in these questions is going to really help open your ability to recognize which direction you want to move forward to in the Life planning so once you have an idea of where their strengths are and what their capacity is what's going well right now then you start looking at that desired future that you have in mind what gaps do I see between where we are now and where we're trying to get and how realistic does it seem you know I I've spoken to at this point thousands of parents and some of them they really struggle when their child has the capacity to express a desired future and they're like I I just don't see it I I just can't imagine that they're ever going to reach that point even if it doesn't seem realistic you have to step back and say it may not look exactly like that but it could be in the vicinity it could be adjacent so let's not close off that route completely but let's backtrack and figure out where are we right now and and see what we can start laying as bricks in that path toward that desired future even if it doesn't seem that realistic let's start moving in that direction is the idea too broad like there's there's too much we're we're not we're not any narrower than we before I don't feel like we have a plan because it's like I want my kid to be happy well house happy going to help me pick choices and pick programs it it could be too broad or it might be really really specific that there's only 1 path forward and it's like this tiny little narrow line in any deviation is going to mean that we're not moving in the right direction at all we need to bring some balance to that we need to expand that specific a little bit and and give it a little bit more volume in the same way that we to narrow down that idea that might be too broad and then we get to the 1 that is really challenging as a parent is it scary for us to consider this when we are getting the phone calls handling the challenges working on programs that feel like we're getting nowhere and our kids says when is it going to be my turn to move out like my brothers and sisters they have older siblings those older siblings have gone away to college and they're waiting for it to be their turn and that's what they want that's the future that they desire and you think about all of the ways that they still need support they have no way to understand money they don't budget they don't shop they don't make any of their own meals they need reminders to be clean they there's just so much that they don't seem capable of and the idea of them living on their own terrifying they're going to burn down their house somebody's going to break in and take all their stuff they're going to be taken advantage of by strangers that they meet because they're just so friendly they're going to open the door to everybody because I have I've had that experience I walked home and there's a stranger my house because they opened the door to a salesperson you know now for them tea and coffee and it's like whoa how are if you were on your own how many ways could you get taken advantage of this is such a scary future to consider our knee-jerk response his parents is to say no we can't do that it's just not okay what I want to challenge you with is don't automatically close the door you can express your feelings you are entitled to your feelings they are valid feelings I think every parent has fear because we always are looking to the Future and what if those are 2 of the scariest words in the language of any parent and they are like big giant capital letters what if when we have children with special needs but just because it's scary just because it feels a little bit overwhelming doesn't mean that it might not still be a valid path to follow a good future plan for what we don't want to do is let our own fears and anxieties stop for progress toward what our child identifies as their desired future so even though it's scary don't close the door to those kinds of things so when we start to actually look at action plans this is when we have to work backward so we asked in this desired future what services will be most effective if my child wants to have their own apartment and they can't wait to move out on their own but they don't know how to cook and they don't know how to budget and they don't know how to do their own laundry what kind of services are they going to be need they're going to need a lot of services chances are they're going to need something like supported living where they might have a 24-hour staff available able to assist them through all of those things maybe between now because they're only 14 if they're talking about this maybe between now and when they're 25 and actually move out to their own apartment they're going to build a lot of those skills so they might only need a little bit of support but they're I cannot imagine a time that they're not going to need some kind of support in that living environment so what kinds of services are we looking at let's start figuring out what that might look like what services are available um what will support look like support can take a lot of different forms is it a physical person is it going to be some automation I mean I grew up in the 80s well actually I went to college in the 80s I'll date myself I I grew up in is the idea of the smart house now where people can be like turn on the light in this room run the bathroom there's a commercial that I saw that they had like the iPad and it has all the different chores and like hitting a button in the little Zoomer comes out and and sweeps the floor and they hit another button in dog food distributes itself if my child had access to that kind of smart environment and we could program a lot of the daily supports that they need and the tasks that need to be accomplished that open depends a lot of possibilities support doesn't have to necessarily be a person it could be automation it could be picture systems it could be reminders on the phone that they carry there are a lot of opportunities and support can be very flexible so what kind what will support look like what what possibilities are there what resources will they need you know financially what are they what's it going to take for them to be able to afford to live what are the options to build those resources what skills did they really need to work on you know even if they have all kinds of support staff and they have different kinds of Support options built in and they have all kinds of reminders what skills do they have to have to utilize those supports they have to be able to advocate for them elves they have to be able to have the dexterity to hit the right button on the screen we don't know there's such a variety of capacities but all of these are questions that when we're thinking about that desired future and what we potentially want it to look like we want to ask that and and work our way backwards so we start looking for the resources we start trying out the different kinds of support we start asking the questions we look for people who've already had that experience and we start asking them how did you first get connected what were the things that were most challenging and we start figuring out what do I need to do now to start moving in the direction of that desired future so once we have a clear Direction now we're in the driver's seat and we're heading towards towards that desired future we start making these decisions so what services are essential let me ask my service coordinator some of them may not even exist right now I I've mentioned I'm the life planning specialist with home of guiding hands I've doing a life planning workshop series for what is now 19 years we did the math before the group started tonight and in those 19 years there are at least 2 living options 3 Program options and change laws in 2 or 3 different categories that did not exist when I started doing life planning when you speak to your service coordinator about your child's future they may say we don't have any program that looks like that we don't offer any service like that it doesn't mean that it's not going to exist in the near future future Regional Center has funds every single year for the development of new services and new programs and schools are constantly looking to help their families and their parents if they don't know what you need they can never develop that program if they don't know what accommodation is going to be helpful it can never be written into an IEP so we have to have Clarity that what are the essentials and then start looking for them what accommodations might that mean what skills will supporters need for my son buckets and buckets and buckets of patients because he's going to have the same conversation with staff at least 12 times every hour on the hour you know they're they're going to be talking about where they're going to go and particularly if they put in something new for my son if there's a new expectation my son processes information new information out loud and verbalizes it over and over and over again so it's not that he's asking me to tell him again it's that he's trying to make it make sense in his own mind and he's trying to get like a fact check with me so he'll ask the same question again and again and again and again until eventually he reaches the point where now he's not asking me he's telling me because he is understood and accepted the new information so how to share information might be an important skill set for a supporter how to present choices how to make opportunities sound appealing how to play to strengths those might be skills that supporters really need to have what kind of contact interaction do services offer and how flexible or those guidelines we are seeing over and over and over again that programs are becoming more responsive to individual needs and there are more accommodations that are being made but sometimes there are fixed guidelines there are expectations that are qualifiers and some of them there just is no wiggle room so we need to ask we need to find out there's a program and I think it would be a great thing for my child that would help them move record the skill sets that they need for this desired future that they've identified but the program only takes place in a specific environment and my child struggles with that environment it's crowded it's loud there are not the same kind of safety controls so I I need some accommodation for them to participate but in a way that's safe if it can only take place in that 1 Environmental for him to participate so what is the next closest thing is there something that's adjacent could I work with the staff in a different environment and get the materials what are what are my problem solving options here but I have to start with understanding what kind of interaction or services what guidelines exist and and how flexible are those guidelines and then again it always comes back to the money how much is available and and do we have enough put away or how much are they going to have to continue to make available all of those are pieces that we have to consider so with the big picture once we have an idea of what we're trying to aim for in this future plan the plan that's when we start to build the bridge with the big picture in mind we can start to take those little small steps and master the little goals that move us in the desired Direction This is not always easy to see our progress um when I do the life planning workshops families create a life plan and they document their child's current abilities the idea of the document is if something where God forbid to happen to me tomorrow all of the things that I know about my son are not going to die with me I've left a record what I tell parents is this is something that needs to be Revisited on a regular basis you go back through it at least once a year every year if your child is younger you're going through it more often because what is the only constant change people might have a new address they might have a new phone number my child's medications might have changed it could be bigger than that it could be that they used to really struggle to communicate their wants and needs and now they walk in the door and say today I want and they have learned how to use that phrase that's actually the first thing my son learned how to type in the computer I want that was the first 2 words of everything that he typed for a very long time I want he can still spell that word but when we are in the mix of it when we are dealing with the situation with the individual with the challenges with the skill sets with the D day to day every day it's very easy for us to not notice the progress so periodically looking back and comparing what was the situation when I documented it 6 months ago and what is it now and we recognize like yeah there's been some shifting there's been a little bit less resistance there's been a little bit more willingness there's been quite a bit more success with the willingness so we are making progress we are a step closer to that desired future it's still way down the road but we are Step Closer because we've made some progress so obviously we don't go on this journey loan there are a lot of places that we get support some of these May apply to everybody I doubt all of them apply to everybody but resources that are available to us Regional Center I I believe that I'm speaking to parents who have children who are clients of regional center your Regional Center system is designed to help you get Services while you are still in the school system that can be a challenge there are very few things that they don't say oh that's the responsibility of the school if you are going therapy occupational therapy counseling all of that they kind of lump into the school if your child is in the school system chances are the most you're getting is maybe respit services but once your child becomes an adult then Regional Center is the funder for a of the services that are involved in that ideal Life Plan including their training their their job their living environment all of those are things that have come through the regional center so we want to be having conversations even though they may not have effective Services right now we want to be in con constant conversation about that desired future so as services and opportunities become available Regional Center is aware and my child's needs are kind of on their radar because as I said programs are always being developed there may not be something right now or my child may not be the right age right now but if I'm bringing it up every single year during the IPP process it's on the radar of the regional center and if a new program is developed if my son becomes all of a sudden they're going to bring it up to me because I've mentioned it to them so they're part they're with me on this journey School Services you know the schools I think do a fantastic job of trying to make information available to families case in point they invited me here tonight to talk to you um but you're a lot of times for many families the this classroom Staff feel like your partners because they are working with your child they are trying to achieve the in kinds of progress they're working on the same skill sets and you might talk to your child's teacher or classroom aide more than you talk to your service coordinator at Regional Center by a lot because you see them every day you see your service coordinator maybe once a year but your school services are a constant support to you on this journey if you are sharing your desired future that becomes then something that goes into the pot and the discussion about what programs that we're going to work on what skill sets are we going to prioritize how are how is that supported by their participation in General Ed because it's Community it's social based and it's communication based and it it gives them an opportunity to practice their compromising skills whereas you know there are some things that maybe they're not ready for but that's part of the conversation and it becomes part of the goal support groups can be invaluable if you have people who are like-minded who share your enthusiasm who just have maybe more experienced their children are a little bit older being of support to other people is tremendously helpful when you clarify your own thoughts when you're helping somebody that's kind of their child is 5 years younger than yours and you are trying to explain like what you had to say to their teacher at that age it really kind of makes you go oh and I don't have to do that anymore because here I'm recognizing progress but I'm I'm recognizing it because I'm in conversation the support group whether I'm giving or receiving support groups function as a way to normalize our experience and particularly for people with children with disabilities they can feel very isolating so never underestimate the value of a support group um the IEP the IP process those give us some of the Milestones that help us recognize when we're making progress resource events are wonderful opportunity I know most high schools have resource events in the spring and fall for families that are getting ready to to transition out of high school or to move from the General Ed to transition programs like Trace um at those resources you have a lot of providers and they are there to answer your questions it's not a matter of just running by and grabbing the free giveaways although go ahead and take advantage of that that's there for a reason but having the conversation and being able to ask the question is very very insightful um when my son was 15 I started going to Resource events because he we came to California when he was 3 by the time he was 4 he was already a non-public schools all of his programs always had 1-to-1 Staffing his behavior and his safety concerns were huge and I was really looking to try and find what kind of adult program he was going to be able to qualify for so I went to all the resource events and I asked the questions I said you know this is my son this is what he deals with this is what it looks like do you have anything that approximates that and the answer was no no oh God no absolutely not um and it was very eye-opening to me and it gave me a lot of information about what foundational skills we really needed to keep working on in order for for him to be able to participate in any kind of adult program and I would not have necessarily known how important those were if I hadn't gone to the resource events and gotten the answers from the direct providers to recognize like he was not going to fit in he was not going to have a ratio anywhere close to what he was used to the closest they were coming was 1 to 3 so he was used to 1-on-1 it was always up to him it was always his choice if he decided not to go somewhere the staff stayed where he was but if he was in the community with 2 other clients and he decided to stay where he was and the other clients were already on the bus or getting on the van or getting on the trolley what was that worker going to do that was a big concern for me so when I realized like nobody was offering anything less than 1 to 3 we had to really step up our cooperate focus with my son and talk about taking turns and his mom's turn to make the decision my son can make decision next time now it's Dad's turn and we started incorporating more language about whose turn it was to decide to get him used to the idea that it wasn't always going to be his choice in the way that it was in the school but we only need to do that because we had gone to the resource events and gotten the information training means like the 1 today are always empowering podcasts I I I'm not a huge podcast person but I do listen to some of them once in a while um very recently they've developed a program called path now which is a free resource for families to be able to kind of go in and use their search engine to get connected to different kinds of resources and supports and services and you know treating my own horn I have the life planning workshop series and I can help families kind of navigate through some of these questions and some of these processes so there is support available what kind of support is going to feel appropriate for your family is going to be unique to you each of you has to decide for yourself what kind of learner am I what kind of environment is most comfortable for me and possibly my sibling or my child possibly my spouse I don't know how many of us are going to be part of this process that might be unique to your family as well but do you do best in line in person you like to be face to face you like to be able to read the read the room and and get the nuance are you totally online you are like absolutely the Deep dive into the internet and you can find anything anywhere if it's online are you somebody who likes to read and digest and kind of figure it out for yourself do you do more better with with the audit Tori happening that you absorb the information better just by listening do you really enjoy a 1-on-1 dynamic or do you really like the the energy of a group of people where there's a lot of ideas going back and forth do you like bidirectional I'm not just the 1 the questions I'm able to share my experiences and it's going both ways and I'm helping them every bit as much as they're helping me all of those are types of dynamics that can happen when it comes to the support along the pro along your um you develop your plan oops so life planning I want to encourage you to think of it as a road map you know where you are when you look at a map you can figure out like here's San Diego and oh there's the there's New York City it's pretty far away there's a lot of Road between now and then there are a lot of different directions I could take to get there but I see where both those points are and I see all of the opportunities and is available to me in between so when we can look at and know what our destination is and see that optimal future we have an idea of what it's going to encompass that exceptional quality of life is not just a destination but it's a journey that we're on together because we don't really get to the end even when we reach that Milestone even when we you know our child has moved out and they're in their own apartment and they have the support and they have the furniture and they have their space life doesn't stop for them now they get to build community now they get to explore Hobbies now they get to do the things that are valuable and important to them in their own space and how they interpret that is going to be different than when they were living at Mom's house because we are always constantly changing based on our experiences so as they reach new Milestones as they reach desired futures they're going to continue to say next I would like to so even when we get to that desired future we can always enhance it we can always build on it a little bit more there's not really a point where we stopped planning for what might happen tomorrow so let's enjoy the journey let's celebrate every Milestone and really take advantage of the opportunities because with that focus of what we're trying to achieve we really have the power to impact the future and find piece right now because we're not worried like I have no idea we have an idea and sometimes that's the best place to start so my name is Wendy Smith I'm sharing some information my email um if you are interested in life planning workshop series you can find it on life planning help.org the there are groups that have just started this month the next groups will be starting in April I offer groups every quarter so our start dates are generally J January April July and September and just to learn more about home of guiding hands in general guiding hands.org is our website you can find information about life planning there as well but I want to leave plenty of time for questions um so I think we are good with about 30 minutes left for questions all right so have has I I have not been paying any attention whatsoever to the QA okay yes right put it up so I can see more people right there's a question in the chat down here so we got a question okay so I was still what he's saying if you have questions type them in um I I'm happy to offer examples tell more stories ask answer questions if you have any to give like a more tangible sense to what a life plan with with me like is there a workbook with go through that would walk us through there there are actually a number of online resources and Regina if you want to when you share the PowerPoint if you want to make 1 available Regina shared a nice 1 with me it really is just an opportunity for families to document what the current status is along with what they Envision the future to look like so there are there are a lot of components to it um you would be documenting current skill sets and routines I I always think of Life planning the Life Plan itself is the parents opportunity to document everything that is along with what they hope will be and they reasons for the decisions that they're making and why they would make the choices that they they anticipate would need to be made in the future so for example um I can have a document that has all of the information about my child's current skills um my my son has very good social skills but within certain Dynamics and as I learn more about those that becomes more I I flesh that out a little bit more so as I mentioned my son loves to be very social he goes like his favorite places the zoo hello hello hello I thought oh he loves being around lots of people I'm going to take him to an art show and I took him to to an art show and I said oh we're going to see lots of people at the art show and he was very enthusiastic because there's going to be lots of people and then we got there and it was in 1 room and all the art was on the walls and we couldn't really keep walking past people we had to stop and look at the art and talk to people we were there 10 minutes I I had allocated like 2 hours for this activity I was like we're going to spend their we're going to be there a long time we were there 10 minutes he's like you ready to go you're all done because it wasn't the kind of social that he wanted so that became more information that I put into the Life Plan not just that he's very sociable but what kind of social he is not just that we you know try to offer him choices but why do we offer choices because we want to empower him and we also recognize that if he feels pushed or he feels that he's being dictated to he's going to push back and he's going to stop moving like that's 1 of his favorite things he'll just sit down and cross his arms and you know when when he doing that there are very few things that you can do to move him like physically he is bigger and stronger and I can't out muscle him the way I could when he was 3 and he knows it so I have to make sure that I am having conversations with him and a big piece of our life plan for my son is giving information about when you are communicating with him make sure you're offering choices make sure all of the choices are acceptable because you want to be able to respect any choice that he makes and you want to be really careful about identifying consequences to some of the choices that he might make that you don't think are good so as an example my son has some safe issues and he well let let me use the bus example my son has had long-standing issues with the school bus when he was young he loved going in the bus but he would stay on the bus for an hour and a half he wouldn't get off at the school he would chase the bus down the street he would roll under the tires to the bus couldn't drive away really not safe bus skills and when he was getting ready to graduate from high school 1 of the things that he was most upset about was that he was not going to ride the school bus anymore because the school bus like there there is no school bus and he's like he he was absolutely adamant he did not want to stop riding the school bus and this was something I could not give him that choice he had to stop writing the best because he had he was a grown-up he had too many birthdays to which he responded no have birthdays know be a grown-up that doesn't work that way so he he had to had to get off City school bus but I offered him the option of the city bus instead so the city bus was something he could ride on Saturdays but the city bus had different rules than the school bus I wanted to get ahead of the safety issues so the rules for the city bus you had to get on and off right away that was first and foremost because otherwise I could see us ending up in TJ because we just weren't ever going to get off the city bus so we had to ride the city bus and we had to get on and off the city bus right away and because some of his issues with the school bus were bleeding into his van that was taking him to his adult program he had to practice on the van to be able to ride the city bus so it became an incentive something he attached importance to so he needed to practice getting on and off then the same way he was going to ride the city bus and show us that so if he did not ride the van we were not going to ride the city bus on Saturday that was a consequence that we put in place and I had to be ready to stick to it and if for any reason he did not get on or off the bus right away then we couldn't ride the bus so I think it was the second time we were going to ride the city bus he was in a mood he just graduated from high school like the the school bus was actually really gone and he was not happy about it and we went to the city bus and he was sitting on the bench and the bus pulled up and he had a look on his face like go ahead I dare you to try get me on that bus like that was the look on his face he didn't say a word he just sat there and he had the what I called a mule look on his face like he just was not going to do it and I turned to the driver and I said I'm sorry he's changed his mind we're not going to get on the bus and the driver pulled away and I said okay you didn't get on the bus right away so I guess we're not riding the bus we're going to walk back to Mom's house talk that angry he was so mad we lived 5 minutes from the city bus stop it took me 45 minutes to get him home because he was dropping he was rolling he was in full tantrum mode but I tried very hard not to identify a consequence that I'm not willing to enforce that's part of offering choices that it's an important thing for me to document in the Life plan because just saying you need to offer choices is not enough they need to understand the power of the choice why the choice is is important and what am I going to do if a choice is something that counter to what we believe is safe so all of that is part of the Life Plan it's identifying the current status what the desired future is going to be and then kind of all of the information that Bridges those 2 points so that can be in the form of interactions it can be environments it can be support staff it could be friends it could be relationships it could be medical issues it could be medications it can be doctor's visits and how those go how do we prepare for those how do we kind of navigate the information that comes out of them it's it's a very thorough document and a lot of the online tools the 1 that Regina shared with me was very good um it can be overwhelming when you look at the online documents you look at page after page after page after page you're like when I do the life planning the document that I share is something like 27 pages long and that's before you type in any of the answers but we do it in segments so 4 or 5 Pages at a time if you go online and find it like planning document there are many different versions cruise around and find 1 that feels like it has the stuff that you want to share knowing what you want to share knowing what you're kind of desired future is is going to be important to helping you fix find the right tool but also don't put yourself under the gun um I I have many families that don't actually finish completing the Life Plan before the workshop series is done because there are things that don't really apply to them or things that they never considered or thought about so they're not sure what answers to put in that's okay that becomes the focus for the next thing they're going to work on no I saw that somebody else asked a question I question that I wanted to give them opportunity okay can you see it in the chat well Michael my glasses are kind of that took them off uh from a parent this is my first time attending meeting thank you very much for all the information I have question about insurance okay I heard if doctors have the statement saying the child is disabled then the child can apply medical is at 2 I have child just received the diagnosis with genetic disorder medical is a little bit tricky um you can get medical waivers Regional Center will assist you to do that they generally require the disability and 2 um rendered Services through Regional Center to qualify for a medical waiver under the age of 18 once somebody turns 8 and their family income is no longer a factor they qualify for Social Security and that that point they automatically become eligible for medical but it can happen earlier with a with a diagnosis um usually at 18 Social Security will insist on their own evaluation of ongoing disability for services for adults um but for younger children it is possible to receive medical I would speak to your service coordinator at Regional Center about the medical waiver program so as as a life planner I'm fascinated because this is the first time I've heard of this was as a thing and um so when you're your position be limited to assisting people with developing this document or would you also they come out and help them Implement things and and go to let's say their their annual Regional Center and advocate for like pieces of the life plan or is it just limited for my current position I'm I'm limited to facilitating the workshop series and the last piece of that there are 5 workshops that we do as a group and then I sit down individually with each parent and at that point we might brainstorm how to navigate a specific ask from Regional Center or how to get a specific goal at it as an IPP item so that it can be funded um we might talk about how to build some foundational skills for things that they see as gaps it could be that they say you know this is what we'd really like to aim for but I'm not sure how realistic that is or um for a lot of families I spent quite a bit of time talking to them about future living options and what that might look like the idea is that they have in mind and what that might mean is as far as preparing and finding the people and the resources and the programs um I I have not been asked to sit in on an individual meeting but I actually I have and I I've gone um I did I I I sat with somebody who was um actually going through what is it when they have the judge come and and hear a dispute with regional center about Services um it it was during the pandemic and and I got on virtually with the judge and the family some sort of administrator yeah but it it was it was for uh service from Regional Center that had been denied and they went through Fair hearing and got to the point that it had gone to a judge and I I got the link and I I was I was in the judge you know talking to the family and talking to the judge and you know I I this is my passion so I I always want to be available to families um and continue to support them even after the workshop series but the the workshops itself I think what you are thinking of and there is now a position as we have developed self-determination um and families are taking charge of their own budgets there is a position with an independent a facilitator and they often help families go through the person Center planning process identify the goals that need to be added to the IPP to get the funding in place for maybe for unmet needs but independent facilitators can continue to work with families and they tend to be the position that is going to actually help them find Services find providers and and um get enrolled in programs they they do an excellent job if I ever decide to retire from doing the life planning workshop series I see myself as an independent facilitator it's kind of a no-brainer that would be my next job but I I love what I do too much to stop question

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