Episode Five: Interview with Dr. Dannette Taylor, IEP Advocate and Consultant

Episode 5 focuses on the transition cliff from K-12 settings and covers future planning, ABLE accounts, and, in Georgia, the Now and Comp Waiver programs. Episode 5 will feature a guest expert, special-needs advocate Dr. Dannette Taylor, who is also a caregiver to an autistic adult. The episode addressed the service cliff and the gradual loss of services prior to transitioning from high school. We discussed the diversity of experiences with the service cliff, the inequitable services available, and the services that may not be available across the various counties in Georgia. Families do need to advocate early, and providers need to understand the lived experience and impact on maternal caregivers.

 Learn more about Dr. Taylor's work at drdannettetaylor.com 

https://drdannettetaylor.com/

References

Brewer, A. (2018). We were on our own: Mothers' experiences navigating the fragmented system of professional care for autism. Social Science & Medicine, 215, 61-68. https://doi.org/10.1016/j.socscimed.2018.08.039

Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory, and antiracist politics. University of Chicago Legal Forum, 1989(1), 8. http://chicagounbound.uchicago.edu/uclf/vol1989/iss1/8

Dembosky, J. W., Heckert, D., Boser, S., & Migyanka, J. M. (2023). Shouldering the burden: Intensive mothering and autism. Family Relations, 73(2), 807-825. https://doi.org/10.1080/10548408.2023.2170544

Dyer, J. T., & Gushwa, M. (2024). DEIPAR deeper: A curricular social justice framework and culturally responsive evaluative tool. In J. T. Dyer & K. Flores-Carter (Eds.), Infusing social justice into social science practice (pp.54-65). Kendall Hunt Publishers.

Gowen, E., Taylor, R., Bleazard, T., Greenstein, A., Baimbridge, P., & Poole, D. (2020). Guidelines for conducting research studies with the autism community. Autism Policy Practice, 2(1), 29-45.

 Ishler, K. J., Biegel, D. E., Wang, F., Olgac, T., Lytle, S., Miner, S., Edguer, M., & Kaplan, R. (2022). Service use among transition-age youth with autism spectrum disorder. Journal of Autism and Developmental Disorders, 52(3), 1051–1065. https://doi.org/10.1007/s10803-021-04999-6

Laxman, D. J., Taylor, J.L., DaWalt, L. S., Greenberger, J. S., Mailick, M. R. (2019). Loss of services precedes high school exit for teens with autism spectrum disorder: A longitudinal study. Autism Research, 12(6), 911-921. https://doi.org/10.1002/aur.2113

Marsack, C. N., & Perry, M. J. (2018). The service cliff for young adults with autism: Parent perspectives on the transition to adulthood. Journal of Developmental Disabilities, 24(1), 78-90.

Seligman, M. E. (2011). Flourish: A visionary new understanding of happiness and well-being. Simon & Schuster Audio.

Shattuck, P. T., Garfield, T., Roux, A. M., Rast, J. E., Anderson, K., Hassrick, E., & Kuo, A. (2020). Services for adults with autism spectrum disorder: A systems perspective. Current Psychiatry Reports, 22(3). https://doi.org/10.1007/s11920-020-1136-7

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Transcript

SPEAKER_00 0:00

Together we'll build a community. Please remember to subscribe to my channel. I have included links to several resources attached to this episode that include the Autism Self-Advocacy Network, the Drextel Autism Institute, in case you would like to learn the latest current statistics on autism, and the Department of Developmental Services Resource, which is an agency to apply for adult supports. We've also included a link to the Mass Ability Program. Thank you so much for joining our caregiving community. Please remember that you are doing the best you can, and we need to advocate for our adult children to safeguard the legislation we fought tooth and nail for. So I want to highlight a social justice framework that underpins this episode. And it's called DPAR. It's a framework that really helps social workers look at all aspects of social problems. And it stands for diversity, equity, inclusion, intersectionality, power, analysis, and anti-racism. It was created by Dr. Dyer and Dr. Gershua. So in this podcast series, each episode will be discussing an issue related to social work and social justice. In this episode, we meet Dr. Danette Taylor, who is a family advocate and consultant. She's serving families in 14 different states. Her information will be on the webpage. Thank you so much for agreeing to be on this podcast. It is for focusing on the service cliff when adults transition to adult services. And I wanted to get an expert opinion on you know what we should have done and what other listeners should do in their last couple of IEP meetings. Would you like to introduce yourself?

SPEAKER_01 2:54

Absolutely. Absolutely. Thank you so much for having me. So I am Dr. Danette Taylor. I am a family advocate and consultant serving families of children with various disabilities, but primarily autism. So thank you so much for having me. Um, just to give you a little bit of background about me, I spent 17 years in the public school system as a special educator. I was a semestiol education teacher, a special education administrator, an assistant principal. Um, so when you talk about that service clip, that's definitely near and dear to me because you know, once our babies leave us, we always wonder how things are gonna go. And oftentimes uh families are not prepared for what's next.

SPEAKER_00 3:36

Yeah, that is definitely true. I wanted to also let you know that I am an insider. I have two autistic adults um who are one is at home and one is near my mother. So she keeps, you know, an eye on him and I'm at home, and I really appreciate um your expertise. I've been following, following you on Instagram. You have a handle there, you're also on Facebook, and you also have a website. Do you want to? Would you be okay with your website being linked to this show? Absolutely, absolutely.

SPEAKER_01 4:26

You can find me at https colon backslash backslash drdennett taylor.com.

SPEAKER_00 4:33

I would love it. Dr. Nett Taylor. Oh my God. I was telling my I was telling my professor, Dr. O, that I'm meeting somebody that I really admire. So if I look awestruck and starstruck, it's because I've been following you. And I really appreciate uh you being here. Thank you. My background is that I've been a clinical social worker direct practice for 30 years, and I've been seeing an increase in the caregivers of autistic adults in my private practice. I see patients for counseling and support, and I do take insurance. I'm licensed in Massachusetts. And so I had to pick a topic, and I picked this. Um, so tell me a little bit about what do you think would be the best way about transitioning to adulthood for our kids?

SPEAKER_01 5:33

Oh, okay. So this is a good one. Obviously, all of our kids are different depending on where they lie on the spectrum. And even sometimes we're when they are considered to be in the same category, whether or not it's level one, level two, or level three, they're all different, right? Yeah. But there are some foundational skills, not only based on research, but also based on my experience as an educator, as well as my experience of a mom like you. I have a son that is on the spectrum who's now 25 years old. And so one of the biggest things that I have read, and forgive me if I can't quote the exact research right now, but it basically tells parents that the number one indicator of future independence are those basic daily living skills, being able to take care of your own hygiene, being able to, you know, identify what your needs and what your wants are at the very lowest level. And when they know how to do those things at the lowest level, no matter where they are, you get to build on that. But those foundational skills are necessary. And so my biggest advice to parents would be don't be afraid to let your child do things. It's okay if they make mistakes. It's okay if they don't get it right. It's okay if they have to do it over and over and over again. And the reason why I can say that with such conviction is because no matter how many times they try and try and try and try, it's going to get better at some point. Even if it's never perfect. Because some of our kids, depending on where they lie on the spectrum, things are never going to be the way we want it to be, maybe, or the way we envision it. But what we're going to see is progress along the way. And sometimes that progress is slow, sometimes not so much. But at the end of the day, we want to make sure that we're teaching them things in a very explicit and systematic way that they can learn so that we don't end up in a position where we're worried about every single thing, right? Because as a parent of a child with autism, we worry about the future so much. And our biggest thing is what is going to happen when we're not here? What's going to happen? And I know it's not just me because I I've spoken to so many families, so many parents, and everyone says the same thing. I'm afraid of what's going to happen in the future.

SPEAKER_00 8:06

Yeah.

SPEAKER_01 8:06

And a part of the reason why we're afraid of what's not going to happen what's going to happen in the future, and only a part of the reason is because we know we're not going to be there to take care of our children like we do, right? And since we're not going to be there, we worry about who's going to love them the way we love them, who's going to take care of them the way we take care of them. And the best thing that we can do for them is to help them be as independent as possible. And that word independence is very subjective because independence is not the same for everyone. Independence is for a level three baby, level three young adults. Independence might just be being able to feed yourself finger foods. But guess what? That's something that someone else doesn't have to do for your child. Or independence may be, you know, being able to ride a bike to a part-time job. I don't know, whatever it is. So the biggest thing that we really do have to do is help our children to get to be as independent as possible to help us reduce some of that fear that we have. And the more we release that control and that fear, the more our children will thrive and the better we'll feel about them growing up and being young adults.

SPEAKER_00 9:30

Yeah, I think that that's really excellent. I think with a lot of families, they are fearful for the future and what the future holds. And there's a concern because there's so many new adults transitioning to adulthood each year. The statistics are staggering. And um, and I talked to someone earlier, a parent of a 38-year-old, uh, earlier this morning, and she created a social network of carers or a social like a team, kind of like that kinship care we we hear about, you know, where we all kind of pigeon. Um, but I love your idea about independence, and I think that that is something that's so important. Um and also letting go letting go. I mean, if I think about that, that's the hardest thing for me.

SPEAKER_01 10:42

Um absolutely, absolutely, you know, like you said, letting go is so hard, right? Um, and oftentimes we're the barrier. We are the obstacle that's in the way. Um, we don't want them to feel pain, we don't want them to feel pressure, frustration, any of those negative emotions, we want to shield them from it, right? And immediately that's what we do as moms, right? We we want to protect our babies.

SPEAKER_00 11:12

Absolutely.

SPEAKER_01 11:13

But the reality is that for our kids, it's really important for us to give them certain experiences as early as possible. Because we know that they're gonna have a little bit of a learning curve. Things are gonna take longer for them to do. But we also have to create an environment where not only are we giving them those opportunities to demonstrate certain skills, but we are breaking down those skills in a way that they can make those small gains and see their own progress and see that they have the ability to do more. Um, sometimes the way in which we coddle our kids really puts them at a disadvantage because they often don't think that they can do it because, oh, mom doesn't let me do this. Um, mom doesn't allow me to do that, mom does this for me. So sometimes they start believing that they are not able to do things. And the reality is that our kids are often able to do more than what we anticipate they can do.

SPEAKER_00 12:29

Yes, I can't do that.

SPEAKER_01 12:30

And you know, I I can say this from experience.

SPEAKER_00 12:33

Um but one of the things that I know is that there are services out there before, you know, before they graduate, they had some services. And then when they graduate, we have to navigate the new adult system, and we've gotta make sure that we have some applications in place. Um, and do you want to talk a little bit about that?

SPEAKER_01 13:09

So, yeah, and if you don't mind, if I can just kind of go back a little bit and talk about the IUP before I come forward to the services, is that okay? So many of our families, you know, our kids are found eligible for an IUP, an individualized education program when they're younger, right? And so school districts, for the most part, they do a really good job of making sure that our kids receive speech services, occupational therapy services. And in some states, they even do a great job of providing things like recreational therapy, music therapy, counseling, not so much in Georgia, but in in other states, they really do a great job of that. And so many of our kids have a very good level of, I'm gonna call it wraparound support within the school system. Um however, as they matriculate grade through grade, you'll notice that services start to diminish. So we talked about that service cliff from a graduation standpoint, but if you're paying really close attention, that reduction of services actually starts to happen in the latter elementary years.

SPEAKER_00 14:22

It really does. And there is a study by Laxman, and I'll send it to you, and it really speaks to that that the service cliff falls differently for different individuals. Yeah. And and that you lose the services early on. Yeah. Yeah.

SPEAKER_01 14:43

And so what I've noticed, um, and and this is based on my experience as an educator as well as an advocate serving clients in 14 different states, and the majority of my clients have autism. And I've noticed that services start to be reduced, at least they recommend a reduction in services, somewhere around the latter part of elementary school. And you'll hear things like, well, they need to spend more time in class, or well, they need more time with their peers. And all of those things are true. All of those things are true. But the reality is that those related services are key to their uh functionality as an adult, to them functioning as an adult. And when you look at the grand scheme of things, you know, uh speech services two or three times a week for 30 minutes out of a six and a half, seven-hour school day, it's really not that much, or even OT. So you fast forward through middle school or junior high, and you get to right before they get to high school, they'll they'll tell you again, oh, we need to reduce services. Or they'll make the assumption that because progress hasn't been what they are used to, that services need to be reduced. And so now we're going through high school, and that's whether or not they, you know, a they age out at 22 or they just graduated at 18. We're in a place of all of the concerns that our children have and weaknesses have they have, they're not affixed. They're maybe fixed. Many of our kids have lifelong challenges that will need to be addressed. And, you know, some school districts do better than others of helping families gain access to supports within the community. But here's what happens for the most part. And this is whether or not you're given any direction or resources. Some school districts, they really don't give you much direction either, to be quite honest. They do not. They pat you on the back. Yes. And and their their idea of what happens after school and what they think happens after school is totally different. The reality what school staff thinks is completely different. They think that there is enough resources, and oh, just contact so-and-so, not realizing that that company has a waiting list of 3,000 kids on it. You know what I mean? So, so they send our kids out. Um, parents are ill-equipped with information and resources, and more importantly, the resources aren't as plentiful for adults. A lot of the resources are limited to a certain age. And once you hit either 18 or 21, now you have a hard time finding the speech services for adults or the OT for adults, though those related services for adults. Even even a counselor for adults is very difficult. I mean, I'm in a metro area, I'm in metro Atlanta, and even for my son, it's difficult to find a counselor therapist to support him simply because of his disability. And so school districts don't tell parents, and I think that they don't tell parents, truth be told, I think they don't tell parents because they don't know. They think it's just like the school setting here, oh, just reach out to you know this particular organization, Easter Seals or whomever, and they'll help you. But that's not the reality. And so our babies graduate and they're not getting services. And on top of not getting services, they don't have the proper funding for different programs oftentimes, because they don't know that, and I'll give you a prime example in Georgia, there's a waiting list for the now and comp waiver, which provides, you know, funding for your child to go to different programs, but there's a waiting list, and I have families that have been on that waiting list for over 10 years. And if you didn't get your kid on that list for 10 years ago, what do you think is going to happen when your child graduates? Yeah. So I just think that it's important that families know the earlier you start looking into the services, the better off you are because you have to know what your options are in your area, because every area is different. Some states do a better job of offering um more availability to services than others. There's some areas I have a client that's in Tennessee in a certain county, and she can't find anything. And I am done the research for her, and there's like virtually no one.

SPEAKER_00 19:50

So it's it's it's just important to start doing that research ahead of time. I'm glad that you said that because um it makes me think of that article. You're on we're on our own. It's a it's that the the parents are just they're totally on their own. And also there's financial hardship because our kiddos do need safety and support depending on what level they fall at for on their autism. And so it's maternal caregivers that take on, you know, the blessing as well as the burden of you know changing their hours. And I was shocked to read the research that there's 55% of mothers completely leave their jobs because they they need to. Um, yeah, so it just really amazes me. Um, so I think the earlier the better, but I I just I wanna be hopeful that there is something out there, and I think one of the things I wanted to ask you about, is there a a parental group that gets together to um provide some sort of activities for the kids, you know, like an autism society out there in Atlanta? Is there anything like that?

SPEAKER_01 21:28

So there are a couple of groups. There is Aaron's Hope for Friends, there is also Spectrum, a company called Spectrum, and they also have activities for young adults, and then there are some uh individuals that literally have put together opportunities. I am one of those individuals where it is led by my my son, he's 25, where he is putting together a monthly outing. Social outing for individuals with autism, various disabilities, and it can be whether or not you are just a you know a social introvert, you don't make friends easily. Where they get get together, they meet at a specific location, whether or not it's bowling, whether or not it's you know at the uh the batting range, any of those things like main event, a place for them to have a little bit of fun as a group. The only thing when you do, you know, private groups, you know, you have to know what kind of a group you're you're getting into. But I tell parents all the time, sometimes when you can't find it, tag your develop it. Because if you need it, I can guarantee someone else in your community needs it as well.

SPEAKER_00 22:51

Yeah, thank you so much. Yeah, did you want to say anything about what your son is doing or what what your experience as a caregiver is? You don't have to. Sure, sure. Sure.

SPEAKER_01 23:07

So you know my experience as a caregiver, I feel like it's very different. Because if you talk to me 20, 21 years ago, where we are today, I would have never guessed it in a million years. My son was nonverbal, he finally transitioned to like echo use of echolalia, somewhere around five, six, seven years old, limited language for the longest time, and he still struggles with language. Don't misunderstand that he still struggles with language, lots of pragmatic issues, right? Still struggling with being in a group and understanding those social cues and all of those things, but language is a lot more functional, okay? So he can identify his wants and needs for sure, he can advocate for himself, all of those things. As he was growing up, I really didn't think that based on what everyone was telling me, and I'm saying everyone, as in, you know, doctors and teachers and therapists, you know, what their thoughts were about his functioning as an adult. And they were pretty much preparing me to keep him at home or in a day program. That's essentially what they told me. And I'll be honest with you, Stacy, it's gotta be my faith because I'm like, Lord, come on, this can't be it. And so um we not only had the services within the school system, and I'm a huge proponent of this, but any parent that's listening, if you can do anything, anything at all, and your children's elders in that younger age range, do not solely rely on school supports, do not rely only on the school speech, only on school OT, only on school services, because the supports that your child receives in school is limited. And we spent 13 years, almost 13 years in outside speech, in outside speech, up until the point where she just had to tell me, hey, listen, we can't do anything else for him. He he knows all the rules, he has to apply it, and you know, it has to be generalized. And so we spent a lot of time, a lot of time role-playing at home, like I said, going to speech, OT, all of those things. And I just honestly, everything that they told me to do, I did. I hear families they go to speech and their child goes in for a session, and I am baffled because they're telling me that, oh, the SLP didn't give us any homework to do at home, they didn't tell us to do anything at home. You've got to do some work at home too. You have to. If you want your child to be in the best possible position later on in life, you've got to take that 15 minutes a day to work with them. You've got to incorporate those language skills into everything that you do at home. I don't care if your child even uses an AAC device. Like you need to be modeling with your child on that device or get a second device and using that verbal language along with that AAC device. But the work we put in now, it has to be intense. Yes. And I get it, as caregivers, it's hard for us because we're tired. We're tired. We're tired. But but the reality is that if we pace ourselves to support our kids along the way, we're gonna see them soar a whole lot further than they would have if we did not. And so, you know, my son now he has a full-time job. That's excellent. He works at a he works for a manufacturing company. It's it's one of those jobs that are rope. It's rope. So he's doing the same thing all day, every day. He does what's called registration. So he basically scans the barcode, puts certain things in the computer, what it is, I don't know. And then he puts it in a box and sends it on down, right? And this works for him, right? It's it's structured, it's the same thing every single day. He knows the expectations, and he does it the same way every single time. And so that has worked out very well for him. It didn't always work out. He's had another job experience where that was a nightmare, but I also knew that we had to find the right fit for him. I think that all of our kids have or at least should have an opportunity to do something after high school. I don't care how severe your child is. I mean, unless it's just a point where they can't do anything at all in terms of, you know, being functional outside of the home, they should volunteering. I don't care if they are the greeter at Sunday service in the morning when everyone's coming in for church and they're holding up the sign in my church. We have some of the other people holding up a sign that says smile and they're greeting us on the way in on Sunday morning. Oh, that's so beautiful. You know, yes, yes. We we we have to give them opportunities to do things, and sometimes it works out. This is the big takeaway. Sometimes it works out, sometimes it doesn't. We have to find the right fit for our kids because we are their voice and we know what their strengths and weaknesses are, and being honest about what their strengths and weaknesses are, you know. Um, one of the services that are common across the country is vocational rehabilitation. And after high school, on that service cliff, like, okay, what what do we do now?

SPEAKER_00 29:28

Exactly.

SPEAKER_01 29:29

Um, we went to vocational rehabilitation and they, you know, they did some assessments and they gave some opportunities. I'm gonna call it that, but none of them were a good fit for my son, not alone, none of them. So we have to know our kids to make sure that they get the opportunities that work best for them, and so that we can see them thriving and happy.

SPEAKER_00 29:53

I'm really glad that you talked about vocational rehab. My my kid here doesn't feel confident enough getting a job right now. So they're in school. And before I started the doctoral program, we had a soap company at the local mill, Aunt Stacy Soaps, and and we both ran this, you know, mom-kid deal. It was really cute. And I I I suspect that we may go back to it or we may not, but the anxiety, you know, the the co-occurring mental health diagnoses are really significant. In fact, the statistics are surprising. 75% of our kiddos do have a co-occurring anxiety or a depression. And I find it really interesting, just mind-blowing, how the neurology is so different for everyone. And I I just I love the fact that you know you're so positive about really having parents do programs with their kids. Because I've always said that I feel that that's the best, the best thing just for their well-being and their mental health. And anyway, so vocational rehab is something that is available. You, you know, you fill out an application, you go through the program. It may not be perfect, but I think also parents have to take that responsibility of co-creating a life together, you know, co-creating a life together. Because it's not really, it's not really like independence, independence. It's it's that it's that ethics of care model, you know, it's that interdependency and the relationship and doing things together, which I find is a big leap for parents because I think that they think, oh, well, my my child should be more independent. But it's I think it's not like that. I think it's like we're creating this amazing life together. We have this, I don't know, just anyway, yeah.

SPEAKER_01 32:18

I totally agree with you. I totally agree with you. And our our kids are so amazing. And if we can tap into what it is that's going to work well for them, and like you say, co-create what it is that you want for their future, it's just better for them. It's just absolutely better for them. And also to piggyback off of what you said, you know, about having some of those mental health challenges that come along as well, that's another place where, you know, resources are also very slim. And that's one of the reasons why I think, and this is just my personal opinion, not based on research, but I think that that's one of the reasons why it is so important for us to, as early as we possibly can, allow our kids to, you know, thump their toes, make mistakes, and be confident in the fact that I'm okay with moving forward, even if things are not perfect. You know, we have to teach them, we have to teach them that one, it's okay to fail, right? Um, many of our kids struggle with that whole perfectionism. It everything has to be perfect. Um, but it's okay to fail, and it's okay that I don't know how to do everything and I know how to ask for help. I just think that that those three skills at an early age is just paramount to to your future, you know, and then also, like you said, creating an environment where you know you guys can work together. And one of the ways that you do that is by giving your child some autonomy as early as possible. You give them the responsibility and say, hey, you know, this takes four steps for us to complete. But I just want you to do, you know, part step one, and you break it down to the most simplest form. Let them get that win out of it, let them feel what it's like to win as well, that confidence. And they're gonna be willing and wanting to, you know, do something, create something, even if it's not outside of the home, it can be in the home. There's so many young people. Um I'm I see them on on you know social media, they're doing things at home, they're creating things at home and they're loving it. They're loving it.

SPEAKER_00 34:48

And I think that that's so important too, because the way in which we look at life right now post-COVID is that there is a lot of industry within the home and some of the fabulous things that they're doing. So it's really important to look at their strengths. I love the strengths perspective, Dr. Siegelman. He he developed this strength-based approach, really looking at what is it that your child really loves, what what resonates with them, how can you really lift that up? Because oftentimes their activities, their interests look a little bit different than maybe you and I. And so we want to just say, oh, this is great, you know, and and lift that up and and really elevate that because those are things that they're doing, industry. Even building a Lego set is something I think that's tremendous. But there is that piece, you know, of, you know, I want to buy something, so I I need to take your card, mom, you know. So that that's a thing too. Financially, it's very difficult, I think, for mothers right right now to make ends meet and to work outside of the house. A lot of people are working inside of the house, which I love, and they're really creating a space, even if it's a messy space, it's a happy space. And I think that that's one of the most important things is to have a happy and wonderfully messy, happy family. Because what we're creating is not perfection in terms of their behavior. We're creating moments of emotion. And I I thought about the connection. I I worked at a hospital 27 years, and a lot of times people had memory issues, and you wanted to focus on just creating happy moments of time and not really saying, well, you didn't do that right, or you forgot again, or that sort of thing. So it's really about lifting, lifting them up, really. It's really about just joy, you know, trying to be joyous. I know that's really difficult to do. I I do know that it's difficult to do. As parents, like I can see perfectionism in myself. I can see my my neurodiversity, my ADD, or whatever it is that I have. And a lot of times, you know, I want them to succeed, but I also want them to be happy. So wouldn't it be happy? Wouldn't it be better if they were just like happy and we made brownies and, you know, and we were just loving on each other instead of like, well, you didn't do that right. You didn't do that right. So anyway, that's kind of, you know, the situation. And it's also important for providers, for mental health providers to learn how to connect with somebody who's neurodiverse and be very affirming of that. There's programs here that specialize in diversity, equity, and inclusion, and working with complex and diverse populations. There's a um, I believe it's at Boston Medical Center. They have a center where people can learn online how to be the best kind of provider. Primary care physicians need to know that autism doesn't end, you know, uh at childhood. That's right. It's a lifelong situation. So I do think it's so important for mental health providers to be cool, calm and collected and cozy. That's my four C's. Cool, calm, collected, and cozy. And, you know, oftentimes, I mean, the the thing that really brought me to this obviously is my lived experience, but also there are so many more maternal caregivers seeking mental health care. And I calculated it's about 50 to 65% of my population now that I see for counseling is a caregiver for an autistic adult. So I think that that just kind of gives that argument that we need to learn kind of a new way of being in the world. And I'm so glad that you mentioned about the IEP meeting, because the last IEP meeting is not the time, I think, to be planning for what could happen. But the problem is, is that there are so many intersecting identities of caregivers right now, right? You know, Kimberly Crenshaw's intersectionality, thinking about, you know, what are some of the compounding issues that they experience, and also what are the what are the compounding oppressions that they experience. I read an article where a mother changed her way of talking on the telephone to a provider to make sure that she didn't sound a certain way so that they would call her back. And that is true. Yes. And so it's so important for us to kind of to recognize that there are just so many, you know, issues that are that are going on there. But any, anyhow, I just think that the other part is that I think providers need to allow family members or the autistic adult to come onto the screen. So many times in counseling, you know, the providers say, I'm sorry, I can't talk to you right now because your autistic child came into the room and is talking. No, just enjoy that conversation. Yeah. Anyway. So I'm sorry about the mental health issues in Georgia, but I do think it's the same here in Massachusetts. It's very difficult to get an appointment with anyone. But I do think that it's important to just be connected with other parents. Yeah.

SPEAKER_01 41:41

And I think the connection with other parents also helps us with our own mental health, right? The worst thing is to be on this journey with all its ups and downs. And, you know, definitely beautiful parts of our lives. But the reality is that there are parts of our lives that we're like, oh Lord, you know, do I really have to experience this? Right. But being a part of a community, I think is huge because oftentimes we feel like no one else understands us. We sit on this island all by ourselves. Family doesn't understand. I mean, even when I was married, my husband at the time and I, we didn't see even eye to eye about how things should go with our autistic child. So finding a community of like-minded parents, and it may not be in your city, they may not even be in your state, quite frankly. But there are communities on social media where you can really tap into and know that you are not alone. You're not by yourself. No matter how unique your situation is, there's someone else out there going through the same thing. And it's not that we want people to tell us what to do, but just knowing that someone else may who they may be a little bit farther along the line than you are, that may be able to give you some support, right? Exactly. And you never know what types of relationships form out of those things. So I think that is important that we we don't discount those other communities that are not, you know, traditional in a sense.

SPEAKER_00 43:21

Exactly. One of the things that I am so excited about is that my son, who's in your neck of the woods, he works at a job and he likes it, and he's going to college, you know, and he's collecting books. So I hear he collected like 88 books and took them home because they were free, you know, and he's reading them. And and also my mother has a little garden, you know, and he goes over and he works in her garden with her. So that's okay, yeah. But she did not understand, she did not understand, and he was adamant. I'm gonna go live near my grandmother. And I'm like, okay, okay. And it was a shock to her. And I just I can't wait to get her on this podcast. But I definitely can see that the flourishing really resonated with me. This idea that yeah, it's hard, but you know, you could build like this really amazing life. And nobody outside of the home needs to really understand, you know, what you all love doing. You know, it it it's we're so, I don't know, we're like so, oh, I I've gotta look a certain way and I've gotta dress a certain way, and I have to present and, you know, and and it's like, you know what? No, you just have to live your life. And that's you know, that's what I like about COVID is well, I mean, you know, COVID is over. Right, you know, but for some of us mothers who are at home, it it is not. Yeah. So I just wanted to thank you so much for the blessing of being able to talk to you. You are a hero in my eyes because you're on point with everything that you do. I think that you know, it would be a benefit to have families reach out to you to get the support that they need in terms of the IEPs. I do believe that you're uh an expert on that. So I really, I really encourage any listeners to go to the the webpage and you know check out, you know, what you can provide. I also understand that you're giving, I just wanted to give you a shout out that I believe you're taking you're giving a course soon. Are you giving a class or a course?

SPEAKER_01 46:08

I do. I give some live, I do some recorded, mostly live. I do parent education on IEPs. I also do parent coaching. If parents have difficulty finding a job coach through vocational rehabilitation, I teach them how to be their child's job coach. I also provide them with steps for planning for the future, mostly not for families that are wealthy, but for families that are not wealthy. I teach them about able accounts, I teach them about places where they can do a do-it-yourself special needs trust and how to fund that through a life insurance policy. I teach them about those must-have forms. If you don't have guardianship over your child, but your child needs still need some support. You want to make sure you have things like power of returning and some of those other things. So I do, yes, I do some classes.

SPEAKER_00 47:03

That's great. One of the things that I would love to do is maybe have you back at some point in the future. And I want to respect your time and you know, thank you so much for being a part of this.

SPEAKER_01 47:18

After so, can I can I leak can I share one thing with your families before we please? Okay. So the one thing that I would like for every parent to know when your child is in school, your child is supposed to have a transition plan no later than the age of 16. Okay. Some states they start at 14, but no later than the age of 16. If your child is in high school, especially if they've hit like 15, 16 years old, that transition plan is way more important than the schools give it credit. But it's only that it's really important because that transition plan can help you create all of those things that you want your child to start learning. Don't go to an IAP meeting without having some ideas written down about where it is you see your child in the future and some possible steps to get them there. Even if you don't know the steps to get them there, have your ideas in your mind about what you want, where you want to see your child once they have graduated from high school, and let the school help you brainstorm those steps to get them there. Oftentimes that transition plan is just a bunch of random information that the case manager may just choose for the same four goals that they choose for every other child. So don't let your child's transition plan, those moments, those years be wasted. Think about where it is that you see your child and figure out okay, what steps do does my child need to take to get to this point? Even if you need help, Google it, ask Chat GPT whatever you've got to do, but make sure you think about what it is that you want them to do and make it a part of the transition plan. Remember that their IEP is not only for academics. They will tell you it's only for academics, but that is not true. IDEAN says it's supposed to take care of academics and anything functional as well. So functional is anything. Anything. So just remember to use that time in the transition plan. And also remember those resource fairs that most school districts have. Those resource fairs include people from the community, and they often have providers that serve young adults after. So don't think to yourself, I'll go to those when my child is older. You start going now. And even if your child is out of school, check those school district websites when they have those resource fares, go to them anyway, because they have information that you can possibly get access to to serve your child. Just wanted to share that.

SPEAKER_00 50:26

Thank you so much. I really appreciate it. We need to be positive and uplifting, and we really need to have a lot of hope and a vision. So thank you so much. Oh my goodness. Thank you so much. My pleasure. In this episode, we talked to Dr. Danette Taylor about transitioning to adulthood, and we learned about the IP, the need to start transition planning early. And we also learned how to really trust what you're doing as a parent. You are an expert, you know exactly what you need to focus on. And I don't believe that other family members really 100% understand what you're going through. So really trust in yourself. Love on your family, love on your child. Thank you for listening to Flourishing, Caregiving Autistic Adults Podcast. Together, we'll build a community. Please remember to subscribe to my channel. I have included links to several resources attached to this episode that include the Autism Self-Advocacy Network, the Drextel Autism Institute, in case you would like to learn the latest current statistics on autism, and the Department of Developmental Services Resource, which is an agency to apply for adult supports. We've also included a link to the Mass Ability Program. Thank you so much for joining our caregiving community. Please remember that you are doing the best you can, and we need to advocate for our adult children to safeguard the legislation we fought tooth and nail for the first time.