Episode #73 Advocate Like A Mother with Alison Hamilton

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  Alison Hamilton is a social worker, recovering journalist, and an imperfect parent of three daughters, a singleton with autism and neurotypical twins. She has been a frequent flyer at support groups since her daughter’s diagnosis, first as an attendee, and then as a coordinator. She helps other parents strengthen their advocacy skills in her Facebook group, Advocate Like a Mother.

Alison holds a B.A. in American Studies from the University of Notre Dame. She worked at newspapers in Texas and Florida before leaving journalism for social work. She earned an MSW from Barry University in Miami Shores, Florida, and got early experience providing individual and group therapy at an outpatient addiction facility and a social service agency before moving to Maryland.

Within a year, she had newborn twins and an autism diagnosis for her oldest daughter. She describes the next several years as a bonus internship. By the time the twins started kindergarten, she had acquired plenty of real-world experience in advocacy, juggling professionals, understanding medical and educational jargon, and behavior management. She also managed to squeeze in some work as a school social worker, primarily in inner-city schools in Washington, DC, and now operates a solo private practice in Maryland.

Learn More At: https://www.facebook.com/groups/advocatelikemother or visit http://www.alisonhamilton.net/

Automatic Transcription from Otter.ai

behavior, child, daughter, parent, advocate, school, maryland, disability, understood, kids, year, allison, agree, environment, needed, navigating, communicate, iep, paper trail, middle schoolers

Hey everybody. Welcome back to another episode of the autism and action podcast. Today we've got another very special guest. I'm Tosha. Rollins, and this is

Chris Hanson.

And we our special guest today is Miss Allison Hamilton. She is coming to you out of Maryland. And she has founded an amazing group on Facebook that I discovered is called advocate like mother. Welcome to the show. Alison, thank you so much for taking time to be here today.

Thank you for having me. I'm happy to be here.

So can you tell us a little bit about how you got started and some of the work that you're doing?

Sure. I'm originally a journalist switched into clinical social work. And not long after I finished my master's, my daughter, Leah, who's now 20, dating myself here, but started showing signs that maybe her development was lagging in certain areas. So she was diagnosed shortly before her third birthday. And that definitely, as many of us, as with many of us, it changed the trajectory of my life. And career probably all I had, I had what I think of as like a bonus internship as a social worker learning about navigating professionals navigating school systems, navigating all of the outside therapies that our kids often need. So it's it's been a journey. And all of a sudden, I woke up one morning and realized I've been on this journey for 17 plus years. And I've learned a few things. But one of the things certainly that has been a full time job is navigating her through systems, particularly the school system. So she is also looking at a next chapter. I'm looking at needing to support her through her next chapter. And I and I was also interested in potentially getting into coaching work, and giving something back to the community. So I thought were you know, what can I share? And certainly, many years of IEP experience, yeah, seem to be an area where I could do some good.

And when we're thinking about IEP is, you know, it's like just one of the most complex processes a parent can go through with all the legal ease and just unknowns. And just so many acronyms, you know, more and more than I can even I can even think of, but like when a parent comes to you, and they're really feeling overwhelmed with the process, like what do you do to sort of coach them through it in the beginning, and then get them feeling confident to sort of advocate for themselves?

Usually, and this is probably where the social worker plus journalist comes in. I like to save between having studied journalism and social work. It puts me in the upper echelon of nosiness. So I usually I usually try to drill down pretty quickly, to figure out what the immediate problem is, actually, I heard from somebody this week, who said, The school is telling me that my child has to switch back to virtual instruction, because they're seeing a lot of behaviors, and the child's a danger to themselves and others. So, that set off a couple of alarm bells for me. So, but the first couple of questions I asked one is do they have a behavior intervention plan? Because if not, that's step one. Because it's a really, it's a really slippery slope. In general, when schools start saying we're changing this, you know, go back to virtual come pick them up today, because of their behaviors. It's one of my pet peeves, because really all you're doing is kicking a problem down the road. You're also in danger of reinforcing the very negative behaviors that you're trying to deal with. Yes. Certainly, my daughter over the years has learned to communicate a lot through behavior. She could give a masterclass probably, on some escape avoidance techniques. I mean, if you did that with my daughter, if she acted out in school, and your solution was to call and have her picked up, she would file that away in her memory and say, next time, I'm not feeling it. I'm doing that again. So instead of addressing a problem, it's kicking it down the road. And so I asked that parent that's the first thing I asked because clearly something's not right in the you know, behavior management universe. If the A child is acting out so much. And I certainly found with my own daughter, and I think the majority of kids on the spectrum, they don't act out just for the heck of it. There's a right. Yeah. And you need to figure out what that reason is they're communicating something. So it's, it's on us, you know, first and foremost, us as parents, it's one of the areas that we can advocate most effectively is really understanding what our child's trying to communicate with behavior. So that was one of the things that bugged me. But then I also the other thing, the other alarm bell that sent off so I said to the parent, does the school agree that this behavior is a manifestation of this child's disability? Because special education law addresses that as well, there are limits to how much schools can suspend a child with a disability for behavior. That is a manifestation of a disability. So if and if they agree that it is, then you have to say to yourself, really, is that even permissible, because if this child is behaving this way, because of his disability, you're basically saying you have to choose virtual instruction because of his disability, rather, and that gets into sort of discriminatory territory. So those are the things those are the things I would try to pull out of the team. Because those are some legal avenues that can help the parent and of course, the most immediate area is what's going on with this child? And the answer came back, no, the child doesn't have a bet. Well, that's step one. Actually, step one is one step before the BIP is to do a functional behavioral assessment, which by the way, they're not going to get a good one of if the child's not in school, right? You really need to look at the environment. So and then the reality is our kids are wired very differently. in certain ways, there are things that even here at home with one daughter on the spectrum and two daughters who are neurotypical, you know, if all three of them did the same thing that I didn't like, my way of addressing it with the neurotypical ones would be sometimes completely different than the one with autism goal is the same shape the behavior, you know, take something you don't want out of the equation and teach a replacement behavior that is, you know, less disruptive or more process.

On my wonder is, is like, what would the district's district do if Virtual Learning hadn't happened through the pandemic? They were they would have to find a solution, right? It wouldn't just say, or I suppose they could suspend. But then again, like you said, you have to get into the whole manifest determination process and really understand it, where that behavior is coming from if it's a disability manifestation or not. And then I really like what you said, in terms of understanding like the function of the behavior, um, if it is an escape mechanism, then sending them home is going to be exactly what they want to drive the behavior going forward. So

yes, yeah, that's exactly. And the other thing that you know, parents should watch for in that arena, it too is if they're kids getting sent to the office a lot. Because again, they're taking them out of the instructional environment, that can also be rewarding. Not just for, again, our kids on the spectrum but neurotypical kids, I had a friend once, who was a teacher, and her daughter was in kindergarten at her school, and she did something I don't know, she drew on a bathroom wall or something. And the assistant principal said, Well, she needs to come in and have lunch, or, you know, Miss recess and spend lunch period with Mrs. Jones. I don't remember who it was. But the mom was very savvy. She said, No, that's not going to work. She likes Mrs. Jones, that's not going to be a deterrent.


So how about you give me some paint, and I'll have her help me, paint over the wall.

Mm hmm.

I think that that's, you know, very important things to mention. We definitely don't want to reinforce those behaviors that we're trying to help them improve on, right? By by sending them home or sending them to the teacher. I know, in my experience, my oldest son who's now out of high school, but when he was in middle school, he was always wanting to come home and go into the office and his nurse file was that big. I mean, it was enormous. And it got to the point where I had to draw the line and say, Hey, we're not doing this anymore. You know, so really knowing how to advocate with the staff. Tell them what your expectations are, you know, can you talk a little bit more about that how parents can address the staff and how they care advocate? Sure, and it

some of it comes down to knowing your child and sharing being Being willing to be open with the team? Does that mean they need to know every medication or supplement your child's taking? No. But some of it is, you know, for example, I won't, I won't pick up my daughter, and I'm very lucky that she's in a school where that's not asked of me. They, they get her. They even get that occasionally, she gets carsick on the bus, so they won't, and they know what she looks like when she's sick. versus when she's trying to convince people that she's sick. Yeah, hey, more energy she's putting into her performance, the less sick she feels. Yeah, but my, my general rule of thumb is there, you know, this was pre COVID. But there's got to be blood vomit or a fever,


Or, you know, show them out, send it back to clot. And that might be, you know, if the nurses and finding those signs, great, you get 10 minutes to chill out, and then you got to go back, you get 10 minutes, often at that middle school level, to something that can be really helpful for some of our kids. Some of the ones who have the skill level and the academic skills to travel, you know, with the gen ed students can be giving them a break, pass. And if they're getting overwhelmed, they can flash the break pass at the teacher, it can be really helpful to set rules and limits on how that can be used. Like you can go to the water fountain come back or you can go to this designated area of the school you stay 10 minutes, then you need to return to class. It depends on the student but I can I can think of one that I worked with just helping with social skills some years back, and at the middle school level, some of our kids can really have trouble with dealing in an environment where kids are breaking the rules. Yes. And what do middle schoolers do? break the rules? The envelope? Yeah. By the time my twins were freshmen in high school, they were rolling their eyes and annoying middle schoolers and I'm calling you know, you just just finished eighth grade last year, they're like, I know, I'm so glad. But and, and that certainly is something you know, across the educational lifespan triggers can change. Yes, deeds can change. I actually think for a lot of our kids, the transition from elementary to middle is probably the biggest one. Because it's such a leap in Independence and such a leap and expectation for all the kids not just again, not just the special ed students about how they're supposed to manage themselves and navigate the environment.

What would you say is like maybe one or two things parents should be looking for when when they're, you know, in the IEP process, and they're like, this is maybe a little bit more than I can handle. I think I need an advocate. How do they know when it's time to go there. Um,

when i when i i can tell you when I needed when I knew my daughter needed a non public placement. This was actually her sixth grade year, you want to talk about crazy transitions from elementary to middle. It was clear it was a series of meetings. And I think that's one of the things you don't realize at first is the depending on what your child needs. It can be a process, it can take multiple meetings, to get a district to agree that yes, there needs to be a change in placement. I got to the point where I think my daughter's whole team agreed that what was happening wasn't working. But I could tell that they weren't going to agree with me what where she needed to go next. So it probably depends on how hard the brick wall is that you're running into. And it can depend a little bit on what the issues are. I've, luckily have never had I've never I've had to file a couple of state complaints around around transportation of all things. And each state has its own procedures, its own procedural safeguards. Maryland has, you know, a state complaint process. Those are four complaints. You know, when the team's not following the IEP, we were having some issues with transportation services, which are an IEP service. And that was an appropriate way to address it. My goal has always been to stay out of due process, because that's really stacked against parents. It's expensive schools will spend plenty of money to fight those cases. It's difficult to do. So I think and I think one of the reasons That I haven't needed a lot of that. A lot of mean, other than this big one, because I knew they were going to push back on me because I wanted them to spend a lot of money to send my daughter to a non public placement. So I thought, let me invite someone to sit next to me who's sued them for. This was just a regular IP meeting, though it was not due process. But a lot of if you if you can, over time, build a good rapport with the school system, build good communication, it can really make IEP meetings easier overall. And granted, there are there are some who are intractable, there are some administrators who don't want to listen. And then maybe having an advocate can help. But I also find that advocacy really is a 12 month, 365 day a year process. Because all year round, I'm looking at point sheets looking for trends and behavior. I'm looking at work samples to see how she's doing. I'm, you know, if she has a few days in a row where she's had an off day, I might communicate and say, What do we think the trigger is? So I'm kind of I'm and it's two purposes, obviously, I want to smooth out school is a big part of it. But I'm also gathering information so that if I see a pattern that something's not working, you know, I can come into a meeting or I can have a conference or whatever, and say, what are we going to do next. So a certain amount of it always is keeping communication open and keeping a paper trail, and I do as much of that communication as I can in writing. For the reasons of having a paper trail, you know, if I do have a phone conversation, a good technique is then to to write an email and recap it. For our conversation, we agreed on X, Y, and Z. Is that your recollection too? And if they either don't respond or say yes, that's my recollection, there you go. There's your your paper trail.

And really nurturing those relationships is so important. And then communicating is how you nurture those relationships.

Right? Well, and even even with this was her sixth grade year, that was a hot mess. And this was the special educator meant well, she was in overhead and probably further over her head, even then she realized, but I worked hard to keep things professional. And I also understood, and in her case, it was less about it the environment, there were not the right supports for my daughter in that environment. So by sort of start separating the two, the environment from the personnel, I was able to keep a good relationship with the teacher. And when I needed her to say, Okay, this is, you know, X, Y and Z aren't working at an IEP meeting on the record, she did that. Yes. But I think that's because we were able to reach an understanding and it is, it's a little bit, it's a little bit like it's managing people, not only your child sometimes but other people who are working with them.

Now, what is the best way for our listeners to get get in touch with you if they're in the Maryland area? Or if they want to join you on social?

Well, so they can they can find me on Facebook, I think you're going to paste these in this group called advocate like a mother, it's free join me would be delighted to have more people in there asking questions and giving feedback. I also have a website, Allison Hamilton dotnet, I spell Allison with one l Li s o n. And that people in the state of Maryland where I'm a licensed social worker, you know, I'm a therapy provider there. But I also have a link to the coaching, the coaching group on Facebook,

where you're offering some very needed services. And I'm sure that you're helping a multitude of families throughout the process. So thank you for all that you do.

Oh, you're welcome. I have found you know, it was if I can shorten the learning curve. For some families, I think that's helpful. It's certainly I felt like but my daughter had been out of birth to five for about a year and a half before I realized what the questions were, I should have asked when she was in birth to five. So if I can help shorten the time, I was lucky, you know, I did have some good school teams, and I always understood her. So even if even in the early going, when there were times I might not fully have understood. special education law. I understood her enough that we were able to get what we needed. Yes,

yes. Well, you guys go check out Miss Allison Hamilton, advocate like mother on Facebook. Join that free Facebook group, visit her website and check her out. Thank you so much for being here Allison.

Thank you for having me.

Let's Discuss!

Now, we would love to hear from you.

Do you have questions? Do you have ideas? Do you have an opinion? Do you think we missed something?

Let's have a discussion in the comments below or head over to the Autism in Action Facebook group. We would love to hear from you!

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