E118: Emotions and Advocacy
Let's talk about a group of parents I found in my research when starting The IEP Lab that had this passion for advocacy but didn't let it control them...they used it as a power within them to work the system and get the best support for their child. What we
If you are hearing “but their grades are so good, they are fine!” then you certainly aren’t alone. This week, guest Valerie Cantella shares her own journey of advocating for her daughter and how her eyes were opened to district resources when she sat on a school board later in her advocacy journey.
In this episode we cover:
1) The ups and downs of advocacy
2) How advocating for social emotional supports is changing (and still needs to change more!)
3) Valerie’s top tips for parent advocates
April is FREE 300 day trial of The New Parent Advocacy Club Membership!
FREE IEP Process Step-By-Step Guide
Read 1st Chapter of Valerie’s Book HERE
E119: Advocating For Social Emotional Support with Valerie Cantella
[00:00:00] Today, I’m wondering if your child needs some support and some of those really vague type need areas, things like social, emotional support, things like emotional regulation. Uh, attention and social skills. And it can be really hard to come to a team.
That says that they don’t qualify for services based on just their grades, because they’re not looking at the full picture. Well today, I’m really excited to introduce you to my friend, valerie can tele, as she tells her own story of how she not only got what her child needed, but she also changed her system in her district
for every other parent coming in behind her. Stay tuned because we’re talking about social, emotional learning with Valerie, Ken tele on this week’s episode.
You are listening to the parent IEP lab, the podcast that helps you get an effective IEP plan for your child so that you can get them supported and learning in school. I’m Beth LEAs and Feld occupational [00:01:00] therapist, who started to notice trends in parents who’ve got effective IEP for their kids without having to fight the school. My mission is to help you learn the pillars of knowledge that I saw these effective parents use in their advocacy, and also to provide insight or knowledge from the school side, so that you have context to turn that into informed, intelligent questions that actually get you somewhere with the school IEP team.
So let’s dive into today’s topic and think about what we can change and tweak to get the right formula for success for your. Child to learn and grow at school. Welcome to the lab.
Beth: I am so excited to have you here, Valerie. But before we jump in, I don’t wanna get ahead of myself, will you introduce yourself and what you do to all of our listeners?
Valerie: Hi. Well, I’m Valerie Cantella. I’m a mom, multi-passionate professional, and someone that wrote a book about her experiences of parenting a special needs child.
And so excited to be here today with you, Beth, because the i e p lab is exactly [00:02:00] what I needed when I was, um, working through my journey. So, So grateful for you and the work that you do to help parents navigate this tricky, tricky part of life. Oh,
Beth: fantastic. Well, I’m so excited. You’re here today too, and you’re just, you’re talking about kind of a touchy, subject and so I always appreciate when somebody, I don’t know, it just feels like you are very much here to help other parents.
Not go through what you have gone through.
Valerie: Right. Absolutely. It can be a very lonely journey. Yeah. And I didn’t realize how lonely it could be and how to address that when I was, uh, a younger parent.
Yeah. So let’s
Beth: go ahead and jump into that. So our topic today is about advocating for social emotional support, which goes hand in hand with your own advocacy story.
Would you mind taking us through however much of your story that you would like to tell us?
Valerie: Yes, I’d love to. So I have kind of a windy, long, crazy journey, and I don’t wanna get too far into it, but just tell the audience some of the key [00:03:00] factors. So I have a son, Nicholas, and he’s now 25.
And then I have an adopted daughter, Katie, who was adopted from Russia when she was 16 months old. And when my husband and I adopted, . We had said we would take any baby that had a correctable medical condition and we had no idea about the non-correctable medical conditions that we were completely unprepared for.
Mm-hmm. like reactive attachment disorder. Yep. Fetal alcohol exposure, fetal alcohol syndrome, and those types of things. So after we adopted her, we quickly found ourselves in the pediatrician’s office saying, what do we. because we had been parents of this other child and he had progressed in a very typical way.
but she was severely malnourished. She was 15 pounds at 16 months. So per perspective, my son was probably 15 pounds at three months. Mm-hmm. . And so she had a really, really difficult start in life and we really didn’t know [00:04:00] that much about her. So, . We quickly got into services through our county social services agency and Katie was getting therapy five days a week.
Speech therapy. Occupational therapy, language therapy, play therapy. Pretty much every kind of therapy you can have. Yeah, which was not at all what I expected, but what that did was set us up really to transition to grade school very smoothly because we had an I F S P and individualized family service plan, and I had kind of gotten into the groove of, oh, these are things that are important and this is a little bit of how these different people and professionals play together and how we as the family work with them.
And we had a wonderful, wonderful grade school experience. Um, found the professionals there so willing to help and very supportive of me as a mom who had never gone through this experience before. [00:05:00] Mm-hmm. . No idea what I was doing. And they were wonderful. And so I feel really grateful for that experience.
In fact, I used to say, oh, well I don’t know that we need those services because I don’t wanna take them away from some other family that might need them. Yeah. And we had the ability to get outside help if we needed it. Mm-hmm. and so, eighties kind of clear treatment plan was a hodgepodge what we got at school and then additional speech therapy.
Mm-hmm. after school and therapy for the Reactive Attachment Disorder. Um, but they said, no, no, she’s legally entitled to this. We want to provide this service. Yeah. And I later became a school board member when she was in grade school and realized just. what a huge budget every school district has for special education and how important, I got to see it from both sides.
Yeah. And so I was happy that we could fund AC adequate services [00:06:00] for our families. And so we were so glad that we could provide a loving family home for her in the United States because we thought, well, we have resources and we have love, and we want to complete our family with adoption.
And we just really were unprepared for the journey ahead. Yeah. And let’s, let’s just give some perspective. When she was adopted, it was, uh, the year 2000. So we didn’t have access to the internet and a lot of. Information like we, we have now available in the support groups. We were on Listservs and we, uh, tried to share information, but it was, yeah, it feels very old school now to look back.
Beth: Yeah, yeah, of course. And I, I love how you kind of touch on the. The feeling that you had where you didn’t wanna take too much. Right. And I think that’s very common for a lot of parents. And I will say over and over again, like when I started working with parents directly doing this, I.
Was so [00:07:00] surprised because the first thing out of parent’s Mouth was like, yeah, my kid deserves this. Like, yes, I want them to be, you know, in a positive learning environment. I wanna learn all I can. And then in the next breath it was, I also wanna help the parents who are coming in behind me. And I think that’s so super cool, but also, , you know, you do, even as a staff member, you do get this impression that like money is scarce and we don’t have the budget for that because you keep getting told that over and over again, but we don’t really see the budget.
So I love that you went on the school board too, and you were able to see it from both sides and be like, hmm, there’s a disconnect here. Right.
Valerie: Definitely is a disconnect and there’s a lot of federal funding to support, um, the idea Act, all of our kiddos deserve the services they need, and I’ve never heard of a special needs parent coming in and demanding something that their kid wasn’t actually eligible for. Mm-hmm. so, Um, I’m so happy when I see it actually [00:08:00] given to the students, but I think that speaks too to the kinds of parents that we become if we aren’t before we have our special needs kiddos, is that we recognize the value view community and working together and partnerships, and we really want the best for our kids, but we also want the best for other kids.
Yeah.
Beth: Yeah, I would agree with that. That’s what I see too. Okay. So let’s kind of turn our attention to social emotional support. And from your viewpoint, I’d just love to hear your perspective on why you think advocating for the social emotional support in schools is so. difficult. And you kind of hinted that like, you know, you’ve been doing this since 2000 ish.
Um, do you see that getting any easier to advocate for social emo emotional supports, or is it getting harder or
Valerie: staying the same? Well, I think we’re seeing, especially coming, I’d like to say, coming out of covid, not that we, I don’t know that we really are, but there’s a lot [00:09:00] more funding, at least where I live in California for social emotional support and education, and I feel like our education community is much more
educated and articulate on the components of that. There are some phenomenal speakers who do professional development and so I think there we’re just gonna keep improving in that area. But I’ll give you a little bit more of my story and how I got to the social emotional part. So when my daughter moved from grade school to secondary to junior high, she switched school districts in our community.
That’s just how it works. and she had a full-time aide in grade school, but she had someone that was available to her during the day, but not always with her in junior high. And she really started to disintegrate. And I wrote that off to junior high hormones and puberty and all of those things that feel like a mystery when you get there.
And [00:10:00] I didn’t really see the depth of her anxiety and depression. And so we went to her I e P. At the end of eighth grade and you know, they said, oh, she’s progressing in speech. She’s passing all her classes. And it was a very low bar of what was expected of her. And then within a few weeks she ran away, um, to a youth hostile for children that we’re being abused because someone that she had met at school.
Kind of told her about this safe place, and she was so confused and unaware of how to deal with her depression and anxiety that she thought getting on a public bus, which she had never done using money, which she had never done. She packed her pack backpack with clothes and she left her bike in the park, got on a public bus and walked to this facility and
went through a horrible day of feeling like she had been abducted, only to then get [00:11:00] a phone call from this place that says, we have your daughter and she’s safe. And that set off a whole slew of, oh my gosh, we have just fallen over the cliff of hell because no one’s prepared for their child to be suicidal.
And you don’t really know all the signs and especially. , their bodies and their minds are changing. And then you add in this layer of special needs. And so from that day, she ended up not going to school, um, pretty much at all. But the school district said, well, she doesn’t qualify for social emotional. And that’s when I really had to change my whole approach to advocacy and really kind of turn up the heat on them and say, well, you need to do some testing because just because she’s passing her classes, doesn’t mean that she doesn’t qualify for social emotional and just, you know, did you read the file?
And we found out that the school psychologist had not read the file when she entered junior high. And I understand [00:12:00] that there are so many demands on our school professionals and we have to appreciate that they’re doing the best they can. But my daughter was ready to kill herself and um, they said she didn’t qualify.
Turns out the testing. She did qualify. We found out, the school psychologist, like I said, didn’t read the file. Mm-hmm. , they quickly, you know, in, in the i e P process, you kind of usually move linear sequentially from one step yes to the other. And if that doesn’t work, then the next thing. But she moved from step like five to step 14, the last step on the scale within four months.
Um, she ended up, we sent her to residential treatment on our own because we couldn’t manage severe anxiety and depression along with the autistic behaviors. And um, and we eventually were able to advocate and have the school district realize that they could pay for it. And [00:13:00] through our series, my daughter was in residential treatment for all of her high school experience, but that included four different facilities.
I eventually was able to find a facility out of state that was specifically for children with reactive attachment disorder, and unfortunately it wasn’t on the approved list of schools that California would pay for or that our school district would. So I found out how to get on the list and advocated for that and worked with the school and our school district to get that to happen.
So I just wanna say to other parents, just because someone says no to you doesn’t mean that it’s no forever. It means that there’s an opportunity to change it. Mm-hmm. . Yeah.
Beth: That’s so interesting. She, so she was, and was she successful at those programs? Like, was that a good placement for
Valerie: her? The school for, so her first placement was unfortunately not a good placement, [00:14:00] so, mm-hmm.
we, she had been there a. and they called us and we said, uh, they said, we don’t think she’s gonna be able to stay. And I, it never even occurred to me after that first placement. I mean, that is one of the most traumatic experiences I think a parent can have short of losing their child to suicide is dropping your child off at a residential treatment center out of state, not knowing how long they’ll be there, um, if they’ll get better, what the outcomes might be.
So my husband and I thought, oh, we’re dropping her off in a safe place. She’ll be safe. We’ll get some respite. This is the best thing, even though it’s not the most desirable. And then for us, them to call us and say, we don’t think we’re gonna be able to keep her, was a horrible moment for us. She, she ended up staying there another five weeks while we figured out the next place.
which ended up being a holistic assessment facility where she stayed for [00:15:00] SI six weeks and they did every test, I think known to man on her to kind of figure out all the cornucopia of diagnosis that she has because she’s not just autistic and bipolar and reactive detachment and oppositional defiance and all those labels that she had accumulated.
But how do we get her the best treatment because some of those treatments are conflicting. Mm-hmm. . . So then, so then she ended up going to the, the place, um, Kayla, which is a wonderful facility in Missouri, and she really did very well there. And about 18 months after she arrived, they said, we really think she’s gotten all she can out of this program.
And she even had come to that herself. Mm-hmm. . So then she went to a program for students with autism and graduated high school. So that’s, um, , I feel like a messy success story, but it can happen. You can get your child what they need and the school district can help [00:16:00] you partner in that. But sometimes getting to the partnership can be messy.
Beth: And did you do all of this research on your own? Or did you have somebody helping you look for options? How did your research look
Valerie: Yeah, so it’s interesting because one thing I am good at, I will say, is researching and analyzing and being very tenacious.
But there are parts that I didn’t understand about special education law. And so after my daughter ran away and we got into that situation where we were basically fighting with the school district about what was the next. . I did find a local special education advocate. She was not an attorney, but she was affiliated with some attorneys.
Mm-hmm. . And she was wonderful because she could look at the test scores and say, , oh, I think she might also qualify for this math processing issue, which I would never have any idea that that could be possible. Mm-hmm. , I was just so focused on all the labels that I had heard. So she and I would, uh, work together [00:17:00] pretty closely and she helped really manage the things with the school district and would come to meetings with us.
and I really didn’t want it to be adversarial, but I also wanted a third party in the room to help us. Mm-hmm. , because we were so just desperate. We were so overwhelmed and scared for our daughter. Um, which feels a little bit different than when you’re advocating for one service, like say speech therapy or ot.
Mm-hmm. or something. . So she was great and she worked with us for a short amount of time, probably six to nine months. Mm-hmm. . And then I just kept doing the research and our relationship with the district did change. And I’m glad to say now that the special education director who we work directly with at the district said there have been changes to the program because of our experience there.
And that, sorry, gets me choked up. Yeah. But. . [00:18:00] We’ve helped others by our experience and being open about our experience and so that other children and families won’t have to go through the same thing. I did at one point have to go in and talk to the superintendent of that district, and I was the president of the other neighboring school district school board, and I just said, listen, I have the education and the tenacity and the resources to
do all this work myself, but I am really worried about kids whose families don’t speak English as a first language, who don’t have the time they’re working two jobs, they have multiple kids. How are, where are we losing children, um, in this process? And he heard me, but I don’t think he really heard me. So that when that special education director told me that things had changed, I felt really hopeful for other families moving forward.
Yeah. And that
Beth: brings it full circle cuz we were just talking about that at the beginning of our conversation. How like, [00:19:00] gosh, it’s just so important because, you know, I really do think in being a staff member, I don’t think that the school staff is necessarily the villain in this whole story. I think it’s our whole setup.
I think it’s the system in general, but I just think that parents just like you are be going to be the ones that make change. Cuz I can’t see a politician coming in and making changes to our school system. I think it’s gonna be parents who change teams and districts one at a time. And you’re a perfect example of that.
So thank you for doing all of that work for everybody else that comes through after
Valerie: you. . Thank you, Beth. I appreciate that . So I’m wondering if you
Beth: have a couple takeaways for parents. I mean, I know that you kind of mentioned them, but, um, I wonder if we wanna kind of talk about your takeaways and, and what you would tell parents if they’re asking you for advice from you.
Valerie: Yes. Well, I would be happy to share a few things. So, so I. [00:20:00] Taking your course, and I haven’t taken it, but I know that the information that people could find in it would be invaluable and just kind of front loading, knowing what to expect. It’s kind of like that book, what to Expect when You’re Expecting.
Yeah. Except with the I E P process. And I think sometimes we get too far into the process and we realize, oh, I wish I would’ve known more. Mm-hmm. . So I think services like yours are so critical and I’m so glad to know that you are out there doing. I would also say save every single piece of paper that they want you to sign.
The school or the district is asking you to sign and remember that you don’t have to sign it on this spot if they ask you to take time to read it and understand it. And then also I would recommend keeping it in a binder or some organized fashion. , I don’t think I kept every piece of paper. And so I had to do a public records request and get my whole daughter’s file at some point, and it was [00:21:00] literally like a, a two foot box full of papers.
And, um, it’s, it’s challenging to organize it when you’re under really stressful conditions. Yeah. So save every piece of paper. . I would also say if this is somewhat of an intimidating process, don’t be afraid to take a friend or family member with you to the IEPs, because I like to believe that everyone there is there to help your child.
But it’s like when you go to the doctor for a scary diagnosis and you, I feel like half the brain doesn’t remember what was being said. So you almost need a neutral advocate there to help you and you know, hopefully your listeners won’t have to go to the, um, point of getting a legal type of advocate. But if that’s, if that’s the route you need to go, you can do it and still maintain your composure and be collaborative and ultimately things can end up really well for.
Mm-hmm. .
Beth: [00:22:00] Yeah, I’m, I’m definitely not against advocates and in especially in your situation, like that’s amazing. And I’m definitely not against lawyers. I love, I love talking with lawyers cuz they’re just a wealth of information. But what I love is just the opportunities that parents have in the little moments to advocate for their kids.
And so at pick up, at drop off at parent teacher conferences, and those are the little things that your advocate can’t go with you too, you know? And j I just feel like the more armed that parents are with the right questions to ask and so if you have that little bit of knowledge, then you just ask so much better questions. And I, I felt that on the school team too, like, oh, that’s a really good question, but you have to have context to be able to ask the good questions.
Valerie: Right. Well, and I think your school professionals appreciate it when you have done a little bit of your research, so they feel like they’re talking to someone that’s a little bit more educated about it. Mm-hmm. , because the school professionals have expertise [00:23:00] that most of us as parents don’t, and. If we can kind of rise to their level a little bit, um, that’s helpful because in reality we see our kids at home from school before and after school, but they see our kids in a social ongoing kind of stressful situation for those
I don’t know what, six or eight hours a day. And so they, they really have some great insight and we would compare notes and. , that is not what I’m seeing at home because they would say, oh, your your daughter’s so charming and she’s so funny. And I’m thinking, whose child are you talking about? Because, and she, mine has reactive attachment disorder, which means she’s not attached to me and I’m the primary caregiver.
And so we do not share the same type of connection I have with my son. Mm-hmm. , I’m so glad that she was a charming and funny little child because I think helped her, um, connect with her professionals and her aids who were so, so wonderful. I’m very grateful that we had that [00:24:00] opportunity to have such, such significant support throughout the system.
Beth: Fantastic. Is there anything else that you want, parents to know from your experience
Valerie: I would like to say. I, in my book, off-script, a mom’s journey through adoption, a husband’s alcoholism and special needs parenting. It really is about my journey as a parent of a special needs child, and I would love it if you would pick that up.
You can read the first chapter on my website, and I’m not here to sell books. I really wanna help people. So if there’s a parent out there that just wants to connect with me, I did a zoom, half hour zoom last week with a parent. It brings me so much joy to know that my story could help others and, and I want to pass that on so that other people can pass it on to future generations.
Beth: Yeah. So if they wanna find your website and, and connect with you more, where do they go to do that?
Valerie: It’s valerie cantella.com and my book can be found at tiny u r [00:25:00] l.com/buy off-script.
Beth: Awesome. Thank you so much for coming on and sharing your story, so appreciate
Valerie: it. Thank you, Beth. Keep up the good work,
Thank you.
I hope you enjoyed our conversation between Valerie and me. And if you need any of her links, they are below this podcast in your podcast player. And they’re also in the show notes, which can be [email protected] slash. Episode one 19. You know, when I listened to our conversation again, I really got the sense that Valerie had an up and down road, right. There were easier times in her advocacy and little wins to celebrate. And then there were harder times where she really had to dive into the research and really learn a lot. And so if you find yourself really being in that season of meeting to dive in and needing support, I want to invite you to a special offer that I have just in.
The month of April, because April is OTE month and April is also my birthday [00:26:00] month.
And we’re also celebrating the two year anniversary of me starting the IEP labs. So you can get a 30 day free trial
of our newest offer the parent advocacy club membership. If you click the link below this podcast and your podcast player, you will be taken to the registration page
inside of the membership. We focused on one topic a month where I provide a really short, quick wind training for you. We also have a live Q and on anything, parent advocacy with me. And we also have our special, amazing parent advocate herself chiller, Crossley.
Lead a group where you can really dive into the topic and really see what’s in your way of becoming your best advocate for your child. It all starts when you click that link below this podcast in your podcast player, and you can check out more information at that link. See you in there.
Thank you so much for being with me today and I will see you. Same time, same place next week. Thanks so much.