[8kUnsaXIsWQ_SPEAKER_06]: So hello, everybody. Thank you so much for having me. Happy Autism Acceptance Month to everyone. And thanks again for inviting me. There we go. So I meant to ask this before I started speaking, but are we recording? Are we recording?
[Adam Hurtubise]: We're doing a live transcript.
[8kUnsaXIsWQ_SPEAKER_06]: Okay. So just for anybody who wants to speak with me offline, I'm very happy to. I have my information on the last slide in the deck. And I welcome any human connection that wants questions, resources, anything that I can help provide. I apologize for my screaming six-year-old at the moment. So just some rules for tonight's session. Consider this a safe space. I am, again, happy to meet privately or stay on late for any questions or dialogue that you guys would like to have off the record. I'm also happy to share any resources that I have with you. You can find many resources that we already have aggregated at the Parents and Caregivers of Children with ASD Facebook files page. I'm going to just click on that and bring it up for you so that you see what that looks like. So here you'll see we have all kinds of fantastic resources, which I'm very happy to have anybody who would like join the group and and have access to those resources. So if I don't have the answers, which I'm just an expert in my own life. So if I don't have the answers, I'm really happy to get the answers for you, look for them. I'm very resourceful and I'm happy to work with you and share whatever I find. So moving on. our agenda for tonight. We're gonna do a centering exercise, which will just be about five minutes of a music video meant to focus everyone. And then a little three minute video that I also wanted to share with you. I have a really terrific infographic about what the autism spectrum really looks like. It spoke to me, may not speak to you, but I'm looking forward to sharing it with you guys and seeing what you think. I will talk about who brings me to this group and our journey so far, what's worked for me and for us, what has been challenging. Then we'll have a little conversation about implicit ableism. Apologies. And what does a more inclusive world look like for you? And bear with me. My current project, and then we'll talk about some self-care, which, what in the heck is that? But I do have some suggestions for everybody of things that work for me. Let's get started. I'm going to play this really terrific Talking Heads song. This must be the place, Naive Melody. This is originally from the Stop Making Sense movie, which was directed, shockingly, by Jonathan Demme, who also did Silence of the Lambs, which I always keep in mind when I watch this video. The guy who directed Silence of the Lambs also made this. So here, I'm going to let the music video take it away.
[Adam Hurtubise]: Heather, let us know when the song starts because we're not able to.
[8kUnsaXIsWQ_SPEAKER_06]: Oh, it did. Did it not start for you guys?
[Anne Herzog-Rousseau]: I think it might be if you can increase the volume because I can hear like a little something.
[Maria D'Orsi]: Let me switch screens real quick. I do have a screaming child in the background.
[8kUnsaXIsWQ_SPEAKER_06]: Can you all hear that yet?
[Unidentified]: No, not yet.
[8kUnsaXIsWQ_SPEAKER_06]: I'm going to actually just, I'm going to just play the song in the background off of Spotify. Give me a moment.
[Unidentified]: Can you hear it now? No. Now? No.
[Adam Hurtubise]: Are you able to bring it up on your cell phone and maybe partner the microphone?
[Maria D'Orsi]: Yes, that I can do. Bear with me.
[Alexandra Lauric]: Heather, I think maybe when you shared the screen, you did not share the computer sound. I didn't share the sound. Okay. So you can unshare. And then when you start sharing bottom left, there is a small box that you need to check share computer sound.
[Unidentified]: I apologize for No worries. No worries. Okay.
[Alexandra Lauric]: So you say share here. So if I go to share screen share screen and bottom left there is like share sound.
[8kUnsaXIsWQ_SPEAKER_06]: There we go. Thank you. I'm going to start from the beginning. Thanks for working with me people.
[Unidentified]: Yes, we say Head in the sky, it's so clear I know nothing's wrong, nothing High up, I've got plenty of time High up, you've got light in your eyes I swear I want to be, but I guess I'm already there I come home, she lifted up her wings I guess that this must be the place Where I can tell one from another That I found you or you found me There was a time before we were born If someone asks, this is where I'll be singing to my mouth. Out of all those kinds of people, you got a face with a view. I'm just an animal looking for a home and share the same space for a minute or two. And you love me too.
[8kUnsaXIsWQ_SPEAKER_06]: hope that got everybody feeling good. We are now going to move on to this little three minute video.
[SPEAKER_02]: I've heard that you have said what Tina Weymouth once said of you, which I think this was at a tender time. And so I don't think she said it. I think she said it in she wasn't as happy with you at this time. But she said, well, you know, he has Asperger's. Mm-hmm.
[SPEAKER_00]: I didn't know what that was then. And then, yeah, after some friends had told me about the spectrum of Asperger's and autism, and I thought, oh, yeah, I can see that. Certainly at an earlier point in my life, not so much now, there's a part where I felt very uncomfortable socially. So I thought, okay, yes, I can see where I'll fit on that. Some of those things that, yes, I can identify with that.
[SPEAKER_02]: It's the very functioning end of the autism spectrum.
[SPEAKER_00]: Yeah, yes, the very functional end. So I can certainly function fine, but socially very uncomfortable. Probably the idea of observing and asking like, am I supposed to do that? Is that the way, is that what people do? That probably goes along with it a little bit. maybe kind of a sort of an intense focus on the songwriting or the artwork that I was doing at the time, that kind of thing. So it's, as other people have said, a little bit isn't the worst thing in the world. And when you, I felt like you don't know, however we are, whatever, you know, we don't know how to be another way. That's the way we are. And you change over the years and become someone else, someone different than you were before. But at that earlier point, that's who you are. You can't say, oh, I'm unhappy. I wish I was more like this happy, gregarious person who's more socially adept. I would just, I figured, I'm not. I'll make friends with. a socially adept person, and they'll be the one that brings everyone in.
[SPEAKER_02]: Well, Pauline Kael has a great mind.
[SPEAKER_00]: Sounds very calculated, but it wasn't quite as much.
[SPEAKER_02]: We all need guides. We all need guides. Well, Pauline Kael wrote, this is way early on, Berne has a withdrawn, disembodied sci-fi quality. And though there's something unknowable and almost autistic about him, he makes autism fun. And at that time, I hope you know, I'm sure you do, what that means to the community with autism. I mean, people are, they're out of their minds happy. So they just, they think that's the greatest thing they've ever heard, that you might even be at some time have been a part of their community.
[SPEAKER_00]: I felt like you don't know.
[8kUnsaXIsWQ_SPEAKER_06]: Okay, so I really like that. that video. I like what David Verne said, however, we are, whatever, you know, we don't know any other way. That's the way we are. And you change over the years and become someone else, someone different than you were before. I think that's just true across all of humanity. And certainly true in the world of my little guy who is autistic. and who brings me here today. So this is the really cool infographic that I found regarding the spectrum. So it breaks it down, and I feel like this is a multidimensional. It isn't just like a panel of color, but more of a multidimensional image for me in that it takes these pieces like pragmatic language, social awareness, monotropic mindset, information processing, sensory processing, repetitive behaviors, neuromotor differences. And it creates a little piece of this and a little piece of that put together, create the constellation that my child inhabits. I really like this.
[Anne Herzog-Rousseau]: Yeah. I think you need to go back to your slides. We've got the interview, the YouTube thing. You're so awesome. Sorry to interrupt.
[8kUnsaXIsWQ_SPEAKER_06]: I'm so sorry. Pardon me. Let me take that down. Hold on. Is anybody seeing my slides now? No?
[Maria D'Orsi]: Let me go back here.
[Adam Hurtubise]: There's a pop-up that asks if you want to leave the site, and I think you have to hit that for it to go out of there.
[8kUnsaXIsWQ_SPEAKER_06]: OK. How about that? Can everybody see my? So this is the infographic that I was just talking about. And I don't know if people agree with me on this. I think it's really abstract, but I do love this image of taking pieces of each of these sort of dimensions and putting them together for whatever the constellation that your person or your people or yourself inhabits. So I'm going to leave this up for just a minute while people take a look, since I was looking at it for a minute there by myself. All right. So who brings me here? This little guy. My little H, he is just an absolute bundle of joy and full of pep and vinegar. And he is my everything. He is the reason I'm here tonight. He's the reason why I do a lot of the things that I do. And I'm just super duper proud of him and love him for all of his everything. I think autism is actually his superpower. So yeah, this is my little guy. So I'm gonna give you a little timeline of, and this, of course, I have two slides that look like this. It's not like we had six steps and that was all that it was, but my son was born in August, 2015. And in October of 2017, we got our autism diagnosis. crazy intensive services began. And basically I had to leave work to be able to parent through all of this, these intensive services. So, you know, I think everybody who has a child on the spectrum knows the time before three is a very intense time of services. And then you hit three, and service cliff. We are out there on our own, no services whatsoever until we move right into the school system, which Henry was very lucky and got a placement in the connections program over at the Roberts Elementary School. And in October, he started there in September, in October, he still couldn't put two words together. He couldn't put the color blue with the word car. with two images next to each other. To present day, after many types of services, really great IEP meetings, things like that, my Henry is very verbal. He's joyful, he's mischievous, he's your average six-year-old with autism. So what have I been doing? Advocacy work, I've tried to, What's worked for me is educating myself. I've done the Mass Families Organizing for Change Advocacy Bootcamp. I've done the Early Intervention Parent Leadership Project. They have a Finding Your Footing program that I did. And I was really lucky that I met up with some other parents in Henry's classroom and they were starting a support group and I jumped on board and became one of the founding members of that. um, support group that still meets, um, which has just been just having connections and getting to know other parents in the networking piece has been, gosh, I mean, it's saved my life so many times knowing somebody else who is not, I'm not going through something unique. Knowing that is just, you know, so comforting. It's helped me to relationship build and to become a good listener, but it's also been great having good listeners around me. And in this world that we all inhabit, we seek out and we share as many resources as we possibly can with each other. And so as far as our support group goes, I welcome anybody and everybody to feel free to join. We are specifically geared towards parents and caregivers of children with autism, but we have a lot of really terrific resources that we don't discriminate who gets public resources. So feel free to join us. I'll have a link to that at the end of my presentation. So the other piece that we've done is just doing the work. We still to this day do ABA, speech and OT. We maintain a healthy sensory diet for Henry. I actually moved into an apartment building that had a pool because I wanted to have a pool for him to jump into. Losing a backyard was really hard. So we have a pool now. And advocating for more inclusive community is just one of our core goals, my core goals. So what hasn't worked or what's been difficult? Pardon me. Did it again. I've had a lot of elopement issues with Henry. And for me, that's given me a lot of anxiety, personally. I tend to avoid parks and stressful novel places because they're not familiar to my son. And he will find his way out of a gate that's been left open. He will hop it. He won't find the way to get out of the gate. I've not looked at him for literally millisecond and he's been in the middle of a road. So it's a huge fear for me. I advocate for safer spaces and these issues are always better with friends. When my son got out of one of the parks, I had a friend there who hopped a fence and protected my kid. So I'm just grateful to have my community of people. I have recently been a little bit more easy going because at age six Henry is now listening a little bit better than he used to. So I will take them to some different parks, but i'm still a mother hover i'm still fearful of him. eloping, and I always have an escape route and what I call a no elopement policy, which means if he runs away from me, we leave and we're not coming back. What I still struggle with to this day is aggressions, self injurious behaviors, high sensory needs, and finding extracurricular activities that are inclusive and or adaptive. So I wanted to touch on the concept of ableism. There's no pointing any fingers or anything like that. We have great experience with our school situation, but I do think that there is a fair bit of implicit ableism baked into the cake. So the definition that I found that I wanted to share Ableism is the devaluation of disability and can result in societal attitudes that uncritically assert that it is better for a child to walk than roll, speak than sign, read print rather than read Braille, spell independently than use a spell check, and hang out with non-disabled kids as opposed to disabled kids. That is from Focus on student disabilities adds to educational deficits from the Harvard Education Review. One story I have about ableism is that a parent shared with me that they were told by the teaching team during their parent-teacher conference that their child was ready to trial an inclusion classroom on a particular subject. As part of that discussion, the parent was told that their child was doing very well and quote, looked like all the other students in the inclusion classroom. Ouch. What does that mean the other kids look like is what went through my mind when I heard the story. So I wanted to see if anyone wants to share their point of view or this can be an exercise that you do on your own if you don't wish to share it and have it shared more broadly, but private wishes, personal wishes, and public wishes for your kids and your students. Let me see if I can bring up I'm going to stop sharing my screen and see if anybody wants to have a conversation. Does anyone want to share anything?
[Adam Hurtubise]: I think that we all, as a private wish, want our kids to be successful and be able to one day live on their own and have a great setup, have work, Maybe they go to the gym, maybe they have a bunch of recreational activities. And I think that we all want that. I think that as they get older, finding out what they want is so important. So then our private wish might just go to the back burner and it becomes their wish. But I feel like most parents in our community would feel that way.
[8kUnsaXIsWQ_SPEAKER_06]: Isn't that just the crux of it, where I think every parent feels that way about any one of their children, whether they be on the spectrum or have special needs. This is not a unique wish. We want them to be happy. So thank you for sharing that, Tanya. Does anybody else want to share something?
[Jameel Webb-Davis]: Can I say something? Can you hear me okay? Yeah. My name is Jamil. I have a, he's going to be 18 in June. He's a senior. He was diagnosed when he was five with a bunch of stuff, but including autism. Since then, they've kind of mutated the diagnosis over time. It's a developmental delay. I mean, I don't know if like that had to be explained to me that it was a delay in social skills. So, you know, if a five-year-old is acting like a two-year-old socially, you know, everybody's kind of freaking out. When an eight year old's acting like a five year old, everybody's kind of freaking out. But when you get an 18 year old acting like a 15 year old, you don't really see, you know, and by the time they're 30, acting like a 27 year old, no one even notices anything. And, you know, the problem is to help them through those young ages, not feel, for my son, he was highly aware there was a difference. He felt like there was a difference and he wanted an explanation. And I was very open and communicative with him about everything. And I wanted to make sure he didn't think that there was anything wrong with him. However, it made it kind of difficult navigating social situations when obviously he was interpreting things very differently. And then trying to advocate for him when it was like, well, it just explained to him, you know, that he shouldn't behave like this. You know, it's like, he seems normal. Like, he's just manipulating you. He knows what he's supposed to do. He's just manipulating you. And there was a real resistance to, I think, to kind of place him at a district and place him with kids with other issues. with the similar issues, because then he won't know what it's like to be around normal kids. I got a lot of that feedback. And I still to this day struggle with how much, because there really isn't a great place. I mean, maybe somebody on this call knows about a great place where there's a great mix of neurotypical and other kids. It's just not a great mixture. I couldn't find a great place with a great mixture for educational settings. Anyway, so I really did struggle with, like with trying to help people understand, because I think when people hear a kid with a disability, they expect to see, like it'd be really obvious and really, I don't know, everybody has their own kind of mental image of what a kid with disabilities is supposed to be, you know? And if your kid doesn't meet that, you know, image or behave, you know, then people don't seem to understand as well. And that was a struggle. And by the way, now he's graduating, he's going to college in the fall. He's excited, we're excited. He still has some issues around different things, but he's ready to practice doing this around other situations. We're really excited. He's doing great.
[8kUnsaXIsWQ_SPEAKER_06]: That's amazing, Jamil, and thank you for sharing that. I think that is common ground for a lot of us. We all just want the best for our kids and we want them to be included. I wish the world was a kinder place. just generally speaking, a much kinder place, more accepting. That was terrific. Does anybody else wanna share?
[Unidentified]: Hey, Marissa.
[4tHK4pb62ys_SPEAKER_06]: Hi, how are you? Good. It's funny, all the stuff that you talk about, it's been such a long road, I think, for both of us, with both Henry and Dave, Sorry. No. He's just doing so great. And I'm just like really grateful, you know, for all the people that like helped him along the way. And, you know, yesterday he went to like soccer practice for the first time ever. And it's like, you never know, like, is there going to be like a meltdown? Are we going to have to leave? And he just like did fantastic. And I just.
[8kUnsaXIsWQ_SPEAKER_06]: Amazing. And David is like just one of the most crazy special people. I look forward to drop off and pick up every day because I get a hug from this kid. He's one of the most amazing huggers in the world. And Marissa, just for everybody's knowledge, is one of the founders of our support group. So she is one of my peeps. who has lifted me up and been there when Henry jumped fences and has just been there a lot for me. And I'm really grateful for her. Anything else you wanted to share, Marissa?
[4tHK4pb62ys_SPEAKER_06]: Oh, I just wanted to say that, you know, we were just very nervous about, like, when you started, like, inclusion. If we should push for more inclusion for him or we should hang back, are we pushing him too hard? it was like a tough decision because he does kind of like fall, you know, like he needs a push, but yet he's still like struggles with like some things even academically. But we just had like his IEP meeting and he's like getting boosted up from like 160 minutes of inclusion to like 195. And his first grade teachers were just like really like proud of him and just like saying he gets a lot from the other students he wants to be like with them and you know he just it was just it was really inspiring because it's like for a long time I wasn't sure like is this inclusion going to really work and. You know, it really does. I mean, it's not always easy, but you know, with the right supports in place, like it really does, it really does benefit him and other kids.
[8kUnsaXIsWQ_SPEAKER_06]: Yeah. And I think this is how you build empathy is by having diverse groups of people together. And from the get go, I mean, if you have kids constantly. exposed to different types of people, then it's not so crazy to encounter somebody of a different ability, of a different race, a different gender. You need representation. And I think the inclusion model has worked really brilliantly for Henry as well. I'm right there with you, Marissa. I think that he benefits from it and he enjoys it. And I think that the other students get something from it as well. So does anybody else have anything else they'd like to share?
[Unidentified]: Yeah, there we go.
[SPEAKER_08]: Hi, my name is Gladys. It's my first time. I was talking today to another Heather at the center, and I happened to confess to her what was going on in my life with my son and I was trying to find some way for help and she suggested. So thank you guys for doing this. It's amazing. I'm very grateful. I'm still in shock. I got, we got a diagnosed for my son. He's two years and a half old right now, trying to cry right there. He was diagnosed with autism and we kind of had doubt for a long time. at least to a certain level. But of course, now we have everything in writing. And I'm overwhelmed. I'm calling 20, 30 different agencies, and there are so many of them. Some of them are very pushy. And I know... How do I know the person that is going to be with my son? And I'm like, I don't even have any qualification. And I haven't even confessed to my family and to other people. And not because I'm ashamed. I just am scared they're going to see Elliot, my son, with a different kind of eye. And it's really, I don't know how to handle this. And I'm rushing through. I'm hoping to find a solution for him, like a solution, like an ABA service so we can start. I don't want to lose Noah one day. but I don't know where to start. I got an initial lease from early intervention, but it's supposed to be longer. And I've been in Zoom calls. Everybody's trying to sell their service. Some, they have different option. And I keep hearing, he goes to a daycare. So I don't know what decision to make. And in fact, Heather, I wrote to you via chat, I would love maybe somebody that has gone through this just to guide me where to start, where to go. And I'm potentially thinking maybe I should move somewhere in another city, somewhere that I don't even know about the school system, what they can offer. I don't know if it's better to leave him in a normal daycare and having all the services gone there. But once he's three years old, do I send him to one of those schools that have a mix of kids? And then I am everywhere and I don't know where to go. And I don't know what to do next. And I'm overwhelmed.
[8kUnsaXIsWQ_SPEAKER_06]: Thank you for sharing all of that. I just want to let you know that you are not alone at all and that you and I should connect offline and we'll talk more about resources for you and how to get you to the next steps.
[Adam Hurtubise]: Thank you so much.
[8kUnsaXIsWQ_SPEAKER_06]: Yes, absolutely. Anne has her hand up.
[Anne Herzog-Rousseau]: Hi, thanks. So I just wanted to say I'm glad to respond to some of what you said. If you are going to pursue ABA services in daycare, your biggest ask is to find out if the daycare fee is in. Sorry, your child is in, is willing to do that. I actually had to switch daycares. Slightly traumatic. But the fact that you're doing everything you're doing, you're doing it right. And that's all I wanted to add.
[8kUnsaXIsWQ_SPEAKER_06]: Yeah, it's a lot. The first few months are really hard. It's a very steep hill getting that diagnosis, getting services in place and figuring out how to find your own footing for it. So you're not alone. That's the best thing that I can say to you. You are in right now a virtual room with people who know all about this and many who've been through it already. You don't have to be the first one to go through all of this by yourself. You don't have to be a pioneer. We have resources for you. And thanks, Anne, for sharing that tidbit, because those personal experiences just inform so much better than a list necessarily can. So thank you. Anybody else want to share something? All right, the room is quiet. Let me share my screen and finish up my PowerPoint here. All right, so bear with me while I just... So my current project right now, which Marissa is also involved with, is Chapters Coffee Cards. And we have established our first chapter officially in 2021, but it's coming to the new Charlotte and William Bloomberg Medford Public Library, I believe on May 2nd. It is a supported work site for disabled adults. And We are, our whole ethos is that we are seeking to give people professional opportunities in the hospitality industry such that they get ready to enter the broader workforce. So we are looking to partner with local cafes and food establishments and create a pipeline for our employees once they get expert in their skillset to feed them into the broader Medford workforce. This is geared to help disabled adults of all ages, but a lot of what we're doing was inspired by the service clip after age 22 when kids age out of the high school. So that is what I am currently up to. Let's talk about self-care. As I said, what's that? But I actually do find time to do a bunch of things on this list here. Connecting with other parents is just one of the best things that I can do, and I think a lot of people will agree. Having your tribe of people that you can count on and you can commiserate with and you can get it is really, it's a core piece of my self-care. Taking any time you can to take care of yourself. Small time is not insignificant. One of the, icons I have up here is the breathe app that's on my Apple phone. It takes one minute to do that. And I often feel like I've been completely reset after I do one minute of intentional breathing. Another thing that I love is the calm app, which has great noise backgrounds for when you sleep, but it also has sleep stories and has guided meditation, and it's absolutely fantastic. It does cost money for a yearly subscription, but I think it's $75 well spent. I like to play Legos with my son. I get some joy out of that. I consider that self-care. He also likes to play just dance. So I have a lot of fun playing these things. I consider this to be a little bit of self-care when we're doing a preferred activity for me. I like to read, so I have the Kindle app even on my cell phone. I became a pandemic gardener, taking seeds out of my tomatoes and I grew tomato plants, I grew peppers, I grew all kinds of things. It was amazing. And by the way, I just want to make sure that everybody takes a moment to say, you guys all made it through a pandemic with your kids who have special needs. This is, it's not insignificant. You've done a great job. And I'm, you know, I'm just happy to be in the room with everybody here. For me, I also do, I love music. I love to listen to it loud and think about the lyrics. I like to just go down the rabbit hole with music. Exercise, I'm gonna say, what's that? But a brisk walk is sometimes really, really good. And it's something you can do with your friends. Laughing is just everything, makes you forget your problems. Finding fun activities to do with your kid. I love doing a lot of these things with my Henry. He does the breathing app with me on my phone. He likes to watch it and he likes to breathe in and breathe out and we do it together and it calms us both down. So it's kind of nice. So I just want to say thank you for inviting me to be here and I'm happy to open up the floor and I'm happy to take questions, answer questions, give resources, anything to that effect. But I encourage you to join our Facebook and actual support group if you are a parent or a caregiver of a child with autism or any related disabilities. Many of our resources, as I mentioned, can be found under our files tab. And I've included my email address here for anybody who wants to reach out to me personally. I'm very happy to connect with you personally. And finally, our next ASD support group meeting will be on, will be on the, sorry, hold on. Bear with me. It's going to be on the 27th I believe last Wednesday of April, and we're going to be hosting. who is a professor at Tufts, and she's gonna talk about the importance of the IEP and what makes it a good IEP, and how to get the necessary services so that your child can access the curriculum. That's the 27th, again, at 7 p.m., and it's gonna be via Zoom. And I'm happy to share those details with you guys as well. And I'm happy to share the slide deck if you would like. So from there, let me just, I believe, have I stopped sharing the screen? Yeah. Terrific. So I'm happy to open up the floor and take questions or have us have a candid conversation.
[Jameel Webb-Davis]: Um, this is Jamil. Can you hear me? Okay. Oh, hi. I just wanted to comment back on, um, I can't remember her name. I'm so sorry, but I, she said something about it was difficult to how to talk to other people about this or how to tell other people. And I, you know, I went through all that same thing when my son was young and, um, I put it in the Christmas newsletter and I, the Christmas newsletter that went out to a hundred people. And I come from a community. I'm not from Boston. I'm not from the East coast. I'm from the Midwest. All my family's from the South. They migrated North to St.
[SPEAKER_06]: Louis, Missouri.
[Jameel Webb-Davis]: And most of my family, and most of my family are, the women are teachers and some are special ed teachers. And they still had no idea what autism or Asperger's was. And when I, it's something you don't talk about. It's something you don't tell people. It's something you, if your child is diagnosed, you keep it a secret. The fact that I was being so open was just unheard of. And, and I just decided I wasn't going to be like, like I wanted Quentin to be proud of who he is and who he, you know, everything. And so I was just very open about it. My family didn't really know how to handle that, but they, so they all did their own thing. But now I'm finding out that many of my cousin's children's have IEPs as well. They just didn't talk about it. I do feel like talking about this is such a great thing because It helps other families. Like you will, um, you know, people feel like, oh, I'm not unique. You know, let me talk to other people. So I just think talking and, um, is your name, is it Gladia? Is your name? I think. Yeah. Hi, Lydia. Um, yes. Hi. I just want to say, I completely understand what you're going through. Cause I went through the same thing. The best thing that ever happened was connecting with other families. I started going to meetings and I was overwhelmed at first. And I just want to say that your kid having you as a mom is just the is going to be the best thing, whatever, as long as you're there and you're taking care of your kid, he will be fine. And I know it's scary and hard. And I remember going through all the same thing. I have tons of gray hair under this weave and that's because I went through, but it was, but I, you know, I'm just, I know I'm feeling for you because I remember being exactly where you are and you will be able to handle it. It's going to, you know, and anything, reach out to whoever you can reach out to me or anybody else, anybody else who offers reach out, reach out. It's going to be very helpful.
[8kUnsaXIsWQ_SPEAKER_06]: Couldn't have said it better myself, Jamil. Thank you.
[Unidentified]: Thank you so much.
[Adam Hurtubise]: I appreciate it. Heather, I didn't know if you wanted to maybe put your contact information in the chat.
[8kUnsaXIsWQ_SPEAKER_06]: Yeah, I'm very happy to. share it with everyone. I'm going to share my phone number and my email address. I'm very bad about answering the phone when I don't know the number. So feel free to either text or leave a voicemail and I will definitely get back to you. I also just, I've been making a very big effort to be more present and not be attached to my phone. So if I don't answer the phone, it's not because I'm ignoring you. But my details are in the chat box for everyone.
[Unidentified]: Thank you.
[Adam Hurtubise]: Does anybody have any other questions or any conversations that they want to have regarding this?
[SPEAKER_04]: I was just going to add that, can you hear me? Yeah, it's nice to see you, Catherine. I just wanted to add that when my son was diagnosed at four, you know, we were told you shouldn't tell him about it. And that felt like it was a shameful thing. And it's not. And I've since shared with him his diagnosis. We talk about the strength, how he can memorize music the way that no one else can. And there's lots of great books out there also. So if you ever wanna, I was given advice by a psychologist too, that, you know, you can say, read a book with them and then say, do you think that kind of sounds like you? And kind of make them think about it. And he said, yeah, I think so. And I said, yeah. So it doesn't have to be a very serious conversation. And it can be something that, I think it's just, there's so many positives that come with autism. And I think that there's a lot of work that needs to be done in the world as seeing it as a positive thing rather than a negative. And I'm hopeful that the schools, you know, my son is in an inclusion class. And I think he struggles, he's having a hard time socially. And then he's sort of had struggles with people thinking that he's a bad kid or like a bully because he wants to touch other kids and that kind of thing. And I think it's so important that I'm sort of the, I joined the inclusion committee at the school because I want more people to just be aware that disabilities aren't necessarily visible. I think that's, it's just frustrating that people I feel like people just don't really know about it unless it's very obvious.
[8kUnsaXIsWQ_SPEAKER_06]: Yeah, the invisible disability is hard to figure out your way to become embedded into regular society. One thing I wanted to also share on top of what Catherine had shared about telling your family and talking to your child about their diagnosis. Henry has not been ready yet, would not understand that he has a diagnosis. That said, I put him on medication over the past year for his ADHD. And that was a hard choice for me. I didn't know what the best decision was for that. And then when I, did put him on medication and we found a really good fit. It was clear that it was the right decision. But that aside, I was crushing up the medication and putting it into one of his favorite drinks. And so I was sneaking it into his drinks so that he would take it. I finally just said, you know what? I take medication every day. What's the big deal? And I finally just handed him one of his pills and he chewed it up and there's never been a question about it. But this thing that I was so concerned about, so worried about, it was nothing. So sometimes just following your gut instinct is really, it's the best way to go. I don't know if other parents have felt that way about other similar decisions, but, I just thought I'd contribute that on top of what Catherine and Jamil had said.
[Jameel Webb-Davis]: You're making me think of stuff. It's okay if I add another. There was a point where I was tracking his behavior. I needed to track behavior for several different people. And so I kept a chart on the fridge because it was always hard, you know, and I would just kind of write down, you know, one, two, three, and each segment meant something. And then I would take it and put it in a spreadsheet and put colors and all this stuff My son loved to be involved with that. And I thought this was something I kind of had to hide from him. But he was like, oh, mom, do you think I was a three that day? I think I was more like a two. Can you put two and a half? Like he got so involved with it. And he actually enjoyed, I mean, I don't know if he enjoyed it, but he actually felt more powerful having some say in like describing how he felt and saying, you know, really that day was a one. I really didn't think I was a two that day. You know, like he just felt, so I feel like when we leave our kids out of things where we're kind of reducing their voice a bit and their voice matters. And yeah, so I just thought of that when you were talking about the medicine, I don't know why that kind of connected to me, so.
[Unidentified]: Thank you, Jamil. Heather, I just wanted to say too that I love that
[Adam Hurtubise]: that you had said that super power is autism. I think that is, I think that's awesome. And I think that, you know, having our kids know their diagnosis or learn about their diagnosis and what it means can be very empowering for them.
[8kUnsaXIsWQ_SPEAKER_06]: Absolutely. Um, I, I feel like it's his superpower because he can hear things better than I can. He can, he perceives things better, more astutely than I can. He is so empathetic. He, I have a friend who recently passed away and I was looking at the mass card for this particular friend. One of my friends sent me a photo of it because the services were out West. And so I was looking at the picture and looking at the prayer and Henry says to me, you love them. And I said, I do, I do. I love my friend, Nick. And he said, I know mama. How he could ever pick up on that type of emotion It's a superpower. He is so highly astute when it comes to reading people, and especially me, because he's my little buddy. But it is his superpower.
[Unidentified]: Hi, Dave.
[Adam Hurtubise]: Does anyone have anything else that they want to share or have a question they want to ask? Or anybody on the panel?
[Adam Hurtubise]: Are you going to mute back?
[8kUnsaXIsWQ_SPEAKER_06]: As I mentioned, I am really happy to connect with anybody offline. And you have my details. So I'll leave, I'll just leave this in Tanya's and Alex's hands, capable hands from here.
[Adam Hurtubise]: Yeah, if anybody has any questions, we're happy to stay on. Or if you feel the need to connect with Heather offline, that's fine too. She did give her information. If you have her information and lose track of it, you can always email us. at medford.cpac at gmail.com, and we can get that information to you. And we will try to post that on our Facebook page, the presentation, Heather, if that's okay. Yep, absolutely. Great.
[8kUnsaXIsWQ_SPEAKER_06]: Thank you guys so much for having me. I really, this was a real joy. Thank you.
[Adam Hurtubise]: Thank you, Heather, for coming and for speaking today. We really appreciate it. We know you're busy and you are doing a lot of things right now. So we're really all are. And really enjoyed your presentation. We hope that you will present for us again sometime.
[8kUnsaXIsWQ_SPEAKER_06]: Thank you very much. I'd be happy to anytime. All right. Thank you guys. Thanks. I'll stay on in case anybody wants to wants to pepper me with questions.
[Jameel Webb-Davis]: but it wasn't related to the workshop. Am I allowed to bring it up?
[Adam Hurtubise]: You can.
[Jameel Webb-Davis]: I just didn't know what communicate. And who's still on? Is Joan Bowen?
[Adam Hurtubise]: Yeah, Joan's on.
[Jameel Webb-Davis]: Hi, Joan. I just didn't know what lot. This really isn't a question for Joan, but she might tap in. But graduation for seniors. Tanya, your son's a senior too, right?
[Adam Hurtubise]: He is.
[Jameel Webb-Davis]: Is he graduating this year?
[Adam Hurtubise]: He is. He is graduating. He is going to be doing the project transition program afterwards.
[Jameel Webb-Davis]: Oh, you're breaking up a little bit. Your sound goes in and out. I'm not sure if I'm the only one that hears that.
[Adam Hurtubise]: That's great. How about now?
[SPEAKER_06]: No, we hear you okay, Tonya. Yeah, I think, I mean, I think it's your connection. It's just me. I'm sorry.
[Jameel Webb-Davis]: But anyway, I just didn't know anything about the graduation date of June 1st. And I heard about it. We had an annual meeting. And this is so this is part is towards you, Joan. And I My ETL brought it up and she wanted to know if Quentin's name wanted to be on the diploma, I guess. He was going to participate in the graduation. And I had no idea. There was just no communication about this at all.
[Adam Hurtubise]: I didn't know it was an option. It's on the school calendar, Danielle. There wasn't anything that necessarily went out. Did you get the email about the cap and gown?
[Jameel Webb-Davis]: I've never seen a school calendar. I've never seen a cap and gown.
[Adam Hurtubise]: The school calendar you actually access on the mps website.
[Jameel Webb-Davis]: Okay, so they don't give it out they don't send it out and everybody just kind of knows the book on there for the graduation. yeah okay. And so I didn't know that I didn't know that out of district kids had the option of graduating with the public school kids.
[Joan Bowen]: Yep. So they, Jamil, they have a right to be a part of all the graduation and senior activities that the in district students have. Okay.
[Jameel Webb-Davis]: So then, um, just know to go to the school calendar and see the graduation I should have known to do that and know that he could have gone to that.
[Joan Bowen]: And so he definitely can. And I think that Ms. Sarkar sent you an email either earlier today with all the information in it. So you should have everything you need to know about cap and gowns and that sort of thing. You should have gotten it earlier today? Yes, I believe so.
[Jameel Webb-Davis]: OK, I got a few emails from her, so I'll dig through them and see. I was reading the subject lines and I wasn't sure what the topics were on each one.
[Joan Bowen]: I believe she did, but if not, I will double check with her in the morning.
[Jameel Webb-Davis]: Okay, and I'll look and see if I have those. Yeah, I just didn't know. And I didn't know how the communication went out for knowing about graduation. But if it's just on the calendar and we all just have to look at the calendar, then that makes sense.
[Joan Bowen]: And we also ask that the ETLs bring it up at the annual review meetings close to graduation too. Some families choose to participate and some families don't. So we want to make sure that we communicate that to families, give them the option. And then if a student wants to participate, what sort of support they'll need at the graduation, rehearsal, we have staff members that we would pair them up with, make sure, you know, if they want to leave right after they get their diploma and not sit there, they can do that as well. So there's many different accommodations we can make for the students at the graduation ceremony, that sort of thing.
[Jameel Webb-Davis]: Okay. His out of district school doesn't have graduation till like the 19th or 16th or something like that. So having it that early, because people are coming in from out of town, we're having a little thing, but We didn't know about the earlier one. So we'll still have to decide what we're going to do. And I'll communicate that with Jim.
[Joan Bowen]: Perfect. He could participate in both, both the out-of-district programming and the in-district.
[Jameel Webb-Davis]: Good to know.
[Joan Bowen]: Okay, great. Thank you. You're welcome.
[Adam Hurtubise]: Jamil, don't forget about PROM.
[Jameel Webb-Davis]: Is there an email?
[Adam Hurtubise]: Also on the calendar. Oh, it's just on the calendar. And we all just kind of look on the calendar.
[Joan Bowen]: All the senior stuff is on the calendar. And I think, I think Ms. Sarkar cut everything that has to do with the upcoming events in the email that she sent you. So just double check that, but I do believe you got all the information regarding all the upcoming events for seniors.
[Jameel Webb-Davis]: Okay. Oh, perfect.
[Joan Bowen]: Okay. Then I'll look through those emails. Okay. Thank you. You're welcome.
[Adam Hurtubise]: It's a lot senior year, isn't it, Janelle?
[Jameel Webb-Davis]: Oh yeah, he got into Clark University, though. He's going in the fall. Awesome. Congratulations. That is awesome. Yeah, we're all very excited. We went to open house on Sunday, and I'm just all freaked out. And he's acting very cool, and I'm just like, ah.
[Adam Hurtubise]: That sounds typical, right, for us? What? That sounds typical for us.
[Jameel Webb-Davis]: Yeah, very typical.
[Adam Hurtubise]: Yeah.
[8kUnsaXIsWQ_SPEAKER_06]: Yeah. So not the same thing, Jamil, but my, my Henry, he went from, you know, he went from PK to K this past year. And I was so worried about the transition. We had just moved like all these different things. I was thinking, this is going to be like the icing on top. It's really gonna, you know, it's going to be crazy. He's not going to take to it. He walked in like a boss. I was the one standing there crying.
[Jameel Webb-Davis]: You know, it's, there's so many, I can give you tons of examples where I was freaked out about something and he was totally fine. Like, mom, I got this, whatever. And then sometimes it's the reverse, like things that I think will be super simple. He's like, no, I need help with this. And so a lot of times you can't like, you know, you can't predict like what's gonna, you know, but I totally, I know it's pre-K to kindergarten. Oh my gosh. I'd be, yeah.
[Adam Hurtubise]: All the transitions are scary at first and they, it, I think it's just mama bear. It's just us being mama bears, really. And then they always seem to work out, so.
[Unidentified]: Jamil, your hair looks great, man.
[Jameel Webb-Davis]: I feel like I can't stop wearing this, because I do get a lot of compliments. And then I feel like I have to tell everybody, go on Amazon. You can get the hair yourself. I'm not supposed to say that. I'm just supposed to say thank you and move on, right?
[Adam Hurtubise]: Yeah.
[Jameel Webb-Davis]: Yeah, thank you. Move on.
[Adam Hurtubise]: You're welcome.
[Joan Bowen]: All right, I'm going to hop off. Thank you, Heather, so much. This was really, it was a great presentation tonight. I really appreciate it. And anything that we can do to help that parent, just please, you know, tell her to contact the school district and we will, you know, I don't know if the child was evaluated or anything like that. So we want to take a look at that as well. So please have her reach out to us and we'd be more than happy to assist her.
[8kUnsaXIsWQ_SPEAKER_06]: You got it.
[Joan Bowen]: Thank you, Joan. Thanks so much for being here. Oh, awesome. It was great. I was looking forward to it. And I think parents felt like really great with the information that you provided. So thank you so much. Thank you. All right. Thanks again. I appreciate it.
[Adam Hurtubise]: So I think that there probably aren't any more questions, Heather, so we can jump off. But again, thank you so much for being on the call. You were wonderful.
[Maria D'Orsi]: Thank you guys for having me.
[Adam Hurtubise]: I really loved the music in the beginning and also the interview after really kind of. Isn't that great? That was really, that was tied together really nicely.
[8kUnsaXIsWQ_SPEAKER_06]: Thank you. All right, guys, have a wonderful night. And thank you again for having me. I really, I feel so honored to have been invited. Thank you.
[Adam Hurtubise]: Thanks, Heather. Thanks, everyone.
[8kUnsaXIsWQ_SPEAKER_06]: Have a great night.