Megan Shaffer and Molly Marshall

00:01 My name is Molly Marshall. I am 43 years old. Today is Thursday December 10th 2029 recording from Wayne New Jersey and I will be speaking with Megan Shaffer. Who is the mom of one of my students?

00:21 My name is Megan Shaffer. I am 33 years old. Today is Thursday December 10th, 2020. I am recording from Rockaway, New Jersey and I'll be speaking this Molly Marshall who is my son's behaviorist.

00:39 Don't Megan. Can you buy I want to know all about Rory? I want to know how Rory came to be so great was born on June 21st, 2016. His due date was actually September 26th 2016 that was for his due date. So she was born 14 weeks early. I was 26 weeks pregnant at the time and my water just broke spontaneously. So he was born an emergency C-section. That was just obviously you can imagine the wild today. There was no like crying when he came out. They rushed him immediately to the NICU and truly Andrew my husband and I had no idea, you know, that's how we started.

01:39 Journey, and no idea kind of where this Boutique has and what that experience will be like he ended up being in the NICU for exactly 150 days. He had five surgeries while he was there the first being when he was just one week old.

01:59 It was just a crazy experience totally overwhelming and I feel like you just run on adrenaline. He came home November 18th of 2016 about a month after he was home. We went to an appointment with an audiologist and they shared that he was deaf, but they weren't totally sure cuz he was premature there. Like maybe it'll come in one day on his hearing will you know this is taking more times. So ultimately that kind of just those up in the air until he was eighteen months. We went to NYU and found out that he is profoundly deaf. So he did have surgery for Cochlear implants when he was 21 months old so he can hear but he does obviously have the devices to help him with that throughout this time. He was getting serve.

02:59 Is there early intervention?

03:03 Otptat speech teacher of the deaf developmental interventionist of ours through that during this time when he was 26 months old the developmental pediatrician give him the diagnosis of autism and that's kind of how we started off kind of what are the next steps, you know, when looking at child care up until that point we had put Rory do you like he was with my Mom 2 or 3 days a week?

03:44 And then he was with a sitter cuz you know, it's kind of hard to figure out where to place your child when you know, they do have special needs and you're not even exactly sure what those are and what's going on. I'm so when he was given the autism diagnosis at 26 months. That's when we started to look into are there any programs available? You know, what supports are in available and kind of seeing, you know, what are insta kind of help support him, you know and progressing and developing and that's that's how we ended up where we are today with fluorine.

04:22 That's how you found out that handle that story brings like tears to my eyes and gives me chills cuz I just can't imagine life how absolutely terrifying that must have been for you and Andrew, you know so far like a way that whole, you know, the whole experience of being in the hospital. I feel like it's just I feel like you just go and go and the parent it's just like you do whatever you need to spare your child and that's like kind of what we just work off of from the moment that he was born. It's just like what can we do for Rory? But definitely I don't think if I didn't have the answer I don't think we would have gotten through that though. It was it was a lot. I mean right now even he's had 12 surgery. So he left the hospital at 5, so he's had

05:22 He's such a sweetheart and he does work hard and he does he is sassy as you know, but it's just like amazing what he's been through for sure.

05:42 I'm very lucky to know him, but I think the support is what helps the most. So, how did you hear about hand over hand? Well, thank goodness. You guys have your sign up like maybe a month before like right when we started we had just got our big sign up. So I had had a place in another program for maybe two or three months. So the structure of that program was basically that he went for like 3 to 5 hours a day and he got individual ABA Services there, but there was no interaction with other kids. It was just one.

06:42 One I'm Terrakion and Westside. So that's kind of like that was our introduction. Like I had no idea what ABA was production and I think we kind of started to realize that it wasn't the right fit for Roar. But I was driving down Route 46 past the Little Learners Preschool and Below. Sign is the hand over hand sign and what does it say? I should know this isn't it says something and I was like that sounds like something for Rory I passed it. It's like how we go to pediatrician in like that sounds like a place for Rory and that is some really then I went home look on the website I contacted the owner.

07:41 To kind of go in fridge war and that's how it started. I mean when we walked in on the twirl my gosh. This is it was just incredible, you know, we didn't have a lot compared to what we had the one other place to compare it to be just walking in and seeing like kids, you know and seen that it was like colorful and there were a lot of classrooms. It was immediately Andrew and I were like just blown away and just felt like totally just grateful like right from the start. We had such a good feeling everyone is super open and the sunset Brewery was going to be able to be around other children was so important to us than to be like in this kind of community. It was it was really cool this exists. I had no idea if it's amazing that this is available for kids.

08:38 The Westside how did hand over hand like start laguerta dislike compound if you can kind of share, you know, cuz obviously I know about it from my perspective is apparently I like so behind the scenes like what if you can just share like what is hand-over-hand? How did it even get started? Why did it get started? As soon as I found on it over hand are Susan markowski and Nicole bednarski. Nicole is the bcba. She's a behavior analyst me and Susan Matt actually in a public school system and Nicole began working with Susan's son and Susan family Susan Santa is on the autism spectrum. And you know, I think just through there.

09:35 You know just experienced with one another in my talking and you know, Nicole being in the home in the community setting if they realize that that you know, this is something that they wanted to do together to kind of take their experiences and help other children and other families and I think in my opinion, it's such a perfect combination because you have Nicole who is a tremendous bcba, you know, she's so super skilled and she really knows her stuff and then you have Susan who brings a very unique personal aspect two things, you know, where she does, you know, firsthand understand why these moms and his family is our are going through and the challenges and you know, she can relate to the highs and the lows and there's so many times that I you know talking with a mom or a parent and I say, you know what I feel like

10:35 To reach out to Susan with us because you know, there's just that there's that connectivity, you know that if you you're not a mom of a child with special needs, you know, you can't can't relate to it. You know, I've been in the field 23 years and actually so that's how I met Susan. So I worked her son is now 17 just turned in October and I worked with her son when he was three. So that's how I I mean, that's how long I've known to cancel when you know, I knew that when I had heard that she was opening up an overhand, you know, I reached out and I kind of just knowing Susan I didn't know Nicole at all, but I knew it sounded like something I wanted to be a part of you know, but

11:27 I think that no matter how long I've been in the field. And yes, like I'm you know, I I know what I'm doing and I know you know how to program for these kids and I don't know what it's like to have a child with autism, you know, so there is that

11:45 To be sad about what Susan I think brings to the table for hand over hand, you know for sure unless you have a child that has special needs like don't understand necessarily. So like early intervention gives you a ton of some service is not necessarily a time, but will give you services and come to your home and work with your child. And I do believe that they will even go if you do have your child in a daycare, they will go to the daycare center setting if they allow it, but what I thought was just like so incredible is so a lot of a lot of kids will get diagnosed so I can only say sorry cuz I'm but we'll get diagnosed with autism at the age of 2 and you in New Jersey at least like you can't qualify for any programs for your school district or any support you only really have a early intervention or private Services if you pay for it, you know, if you pay for those kind of had this like

12:45 Yeah, we're from 2 to 3. Like you could have the autism diagnosis, but you're not necessarily getting a service says you know that you are really beneficial. I mean gosh we could talk about how we're where I started and where he is today, you know, and I think that's what's so amazing about this program is that allows these kids to really interact with other with their peers, you know in a traditional daycare setting but while getting the support in the therapies that they need, you know, the really progressed and it's it's kind of allowing them to have those, you know services and resources like way earlier than they would have, you know being able to start at 2 and I think like that's something I is so special about hand over hand. I mean obviously worries continue to stay there and I think a lot of the families don't ever want to leave leave until he still stay there even

13:45 Play Turn 3 whether they qualify for services in their Hometown District, but I think it's amazing that you allow, you know, the program allows these families to get to support for their kids, you know so much for earlier than they really would have research will show you that, you know early intervention, you know, the earlier the services begin, you know that the better and you don't hand over hand is all different types of kids at the Spectrum, you know, so some kids need a self-contained classroom and some kids need a little extra support in their daycare and some kid kids need to be, you know, some families need in-home services and I think that's what's really unique about hand-over-hand is they offer all of the years, you know.

14:45 These different Services, you know, some families need a little bit of each, you know, so we'd have the home program, you know typical day care settings and an offer of support and that's setting so they really do kind of, you know run the gamut of services. So, you know, I mean that will tell you they've been from program to program and not necessarily had the best experiences or most progress.

15:29 You know and that's something that Susan and Nicole really take very seriously and and we do you know.

15:39 You know a lot of hard work to make sure that our program is top-notch.

15:47 I mean in 9th grade and like the fact that it's also like flexibility, you know, like Rory so very nicely is like in this house contained classroom, you know, where the where he started and you know the thought of him going into you know, the daycare classroom, you know, what the therapist and getting experience is a circle time and what not. Seems just like so far off and I think he was there like 6 months, you know, and he was you know, you guys were willing to be like, all right, let's do that scene ever you always like pushed him, you know forward and kind of challenged him with what's appropriate which is really, you know, amazing. I got always obviously super comfortable with the support there. And then I remember when Roy started like I sweat like we had him in so many supports for like what what do you remember?

16:47 Barry about Rory when he first started the first day I met him at the little guy, you know, I want to bring him in for an intake and assessment aging and in really high rates of self-injury and glass placement like really couldn't handle it and I was like, okay like I mean, you know, he was deliciously adorable little munchkin with his glasses. You know, he started to hit himself.

17:44 When when I realized he was bruising himself and he has scratches in his ears and it was like this nonsense. I mean, yeah, I think like in that moment. I thought to myself if if I can only do one thing for this kid and this family I'm going to get him to stop doing that.

18:09 And I'm just like so whoever's listening knows where he's is not himself like that anymore.

18:29 Now you may honestly think like I you know, I couldn't have done that without you and Andrew 100% trusting me and sometimes you know, sometimes that's like the scariest part of my job is knowing that you have this trust, please didn't you you know to to help Someone's Child, you know, and it's it's a lot and it can be really scary that you and Andrew trusted me and supported me and you know, I always felt like we worked really well together and we've always been in a really candid with one another and yeah, I worked really hard on Roar, but we all get with definitely.

19:33 He really is and yeah, it started off. I will let I always remember the number cuz it was 230.

19:42 Something times an hour that he was heading when you get a call then share that cuz I obviously I don't I didn't sit there and count it and you know, I was home like wanting to just pull my hair out just so upset, you know what the situation and watching her child kind of have the you know impulse to hit themselves is just horrible says 230 something times an hour and now it's

20:11 It's not how old is virtually like non-existent, you know, which is truly incredible and I remember a conversation we had about functional skill and it was like he didn't have that. He didn't have any and I didn't you know, when does a mommy is my first child and I didn't necessarily realize I mean, I didn't realize how you know how I am and I knew he was delayed and what not, but I didn't realize and now like he'll sit in circle time and follow directions and you know, that's like amazing so that yes, that's his name says, my name says Dada he says his brother's name showtimes will say baby for his other brother. It just think it's incredible, you know, like he did when he started, you know,

21:11 So it's really just like amazing the progress that he's made and I think that's like I mean like you said like we always had like a good relationship and a trusting relationship and that has been meant like everything to Andrew and I cuz I don't think you know when you have a childlike and you got a diagnosis like you said Susan, you know, how is that parent experienced with it? You know, it's really hard to understand and you do feel totally isolated and alone and it's nice to have people you know, that genuinely know care about your son, you know and want what's best for him and to help him and that's always been like kind of the sense that we've gotten since he's been there and knowing that were sending him to school every day and that he's with people that really like love him and you have his best interest, you know means everything even as you know, kind of this last year almost a year since, you know happened a lot.

22:11 Has changed the school then what that looks like for a lot of family is in a lot of kids singing what services they get and for us, you know, you know in March kind of everything in New Jersey shutdown in for Rory. We had a therapist in our home.

22:28 I'm 7 days a week working with him. You know, he never he never stopped getting supports and resources, which is just kind of like unheard of for super grateful to have all that, you know played out in the fact that he was able to continue that cuz I know from working in a school that's not you know, that's not the norm by any means, you know, for sure. It's definitely provided a lot of challenges. I'm sure for a lot of family is that we've been fortunate in that regard. How has it been managing, you know cuz you have to manage all the therapist for the kids and stuff and you know with covid-19 jazz that have happened in the world, but how does it how is it affected kind of like your role and supporting these kids like crazy?

23:21 It's been totally crazy, but I think

23:33 I think that the

23:37 The biggest and obviously was you know what having the center being closed and knowing that, you know, just because we're in a pandemic doesn't make the need for these children to get Services any less, you know, if if anything at the you know, probably makes them need it more but you know, so it became really like, you know, Susan and Nicole I myself and Carmen who is the regional director like, you know, we we just kind of put our heads together and we said, okay like we're going to get these kids services and we are very blessed that hand over hand to have tremendously dedicated therapist who were willing to go into the homes during the pandemic, you know.

24:27 We had to make sure that you know, we had safety everyone's safety in the Forefront obviously, you know limiting, you know one therapist to one family, but like one one therapist working with the same child for like an 8 hour day with that's a lot, you know about the therapist. You know continued providing Services during these months. There's something certainly to be said about our family is cool. It's not easy to open your door and allow someone in your home all day, you know where you're walking around, you know, I know I'm walking around half the day my pajamas and you know like that brush my teeth in my house.

25:27 You know where we're supportive of, you know our change in our changing model and and and you guys doing everything that you can to accommodate far therapist. I mean you guys had you don't hand sanitizer at that, you know the table renting me in so like it's definitely been crazy and then you know, we went back in July and then now we're closed again and it was like again eunos first you think okay. Let's keep everyone safe and second. Okay, how are we going to get these kids to services that they need and so, you know right now every one of our our Learners and the dental center or getting services.

26:14 In their homes until we reopen at the end of January, you know, and it's it's definitely it's raise the stress level for sure, but you don't like I said, I mean the the pandemic doesn't change anything for these kids and I think we're

26:35 I'm very lucky to be at hand over hand at a place that you know, really thought. I I don't know of any program that continued Services uninterrupted the way we did. I really don't you know ice for sure the public schools weren't able to eat and then what's the option Telehealth Services? You know, how do you think a kid like where he's going to sit in front of the laptop and respond to a therapist giving directions you like? That's not it. That's a viable option for most of our kids not to mention me. She's put the put the the diagnosis aside and think about like they're three and two and it's been a challenge by our therapists are just like dedicated top-notch and you know

27:30 Hand over hand is you know where we're dedicated our families trust us and we want to do everything that we can for them and and for kids.

27:45 Yeah, I know absolutely need all the therapist or a meat like right now. They're Rory's with his therapist downstairs so we can try to make it as comfortable as possible. But oh my gosh, I didn't like that such a long day for the muino. I love her very, he's he's my son but that's a long day and you can be fresh and space are so you know, everyone's just amazing in the fact that like I said from March till right now, you know where he's never gone never gone without you know service that is going to just again like shows like you said shows you the dedication he knows I'm sure they all have different backgrounds.

28:45 Who got their you know become bcba is a lot of them are getting supervision hours right now. So, you know, we hire personally, I like to hire therapist that don't have experience cuz to me, it's like a clean slate and I can just train them, you know without having to like undo anyting you know that you know, we are

29:14 We are you know where stuff is style me explain so a b c d is what would I do? It's a board certified behavior analyst we have master's degree in education or applied Behavior Analysis or psychology or related field and then use it for your bcba exam and therapists are in the process of doing that. We have a few that are I'm actually sitting for their exam early next year, which is exciting, but I would say we just I mean we trained and trained and I mean every day that's what my job is he now a program for the kids and we train the therapist, you know, and I think

29:58 I think there's a lot to be said about our level of training but also about it's such a great company to work for and Susan and Nicole are such great people to work for and I don't even you know, I wouldn't even say like bosses like their people and they're so real and you know, I think that all of our therapists are recognized that and it just it's a great place to work, you know, so we're very lucky. We we have tremendous tremendous support teams. And yeah, it's a great place to work for store. And like I said, I've been doing this 23 years. I worked in a lot of different settings and

30:42 This is my favorite by far.

30:47 Yeah, I mean, I don't have I like I said, I don't have a ton of you. No experience. You know, I work in schools But Eric at the high school level so I have kids that are out of District, you know for right knee is at different schools and what not. You know that the fact that this exists is just really incredible and that the program's totally tailored to each individual child to make sure that there are you know, continuing to move forward develop skills, you know, it really is amazing that this does exist and I think a lot of families my that I'm going through it or just getting diagnosis or struggling, you know with a child with special needs may not know that these programs like I said if I didn't drive by this sign and see, you know, I wouldn't necessarily known that I could send Lori to typical daycare. We're within that you know is hand-over-hand, you know, which is providing him.

31:47 No support in helping him to develop skills that he needs to know. It's definitely just been a godsend and we're so grateful. I'm great like sporty and ivory therapist as a parent like what what is what stands out to you about Hanrahan? What's what's the most important thing or what don't you know?

32:13 I think

32:17 I think that.

32:20 The first thing that comes to mind so just as a as though for the PS4 as a parent, it's so since where he was born. It was it's just kind of like we're just kind of flying by the seat of your pants like trying to figure out how to get it always deaths at 18 months and we need implants and then he's on the Spectrum and we're just trying to do what we can and was Desiree so finding hanabergh and and physics are experienced there with everyone. It's a real it's a relief. We know that he's getting the best of the best. We see his progress likely said that he now has words. He's you no talking. No, she couldn't even do like the ring stacker, you know, he was hitting themselves with so like profoundly and seeing where he is today. It's just like finding this group of people that genuinely

33:15 Care about your son and want the best for him and and they know what they're doing and how to kind of help him and they genuinely like love him and care and are so always there. I mean gosh I even though I reached out to you, you know at night, you know, if somebody came up, you know, knowing that you have you know, someone that really is just there for you and your family is it's like, you know invaluable. It's just amazing and for us it's just been like I said, you know, the thing that comes to mind is just such a relief to know that you're doing the best thing for your child and I know you know without a doubt and you and I both know that the head over hand and the people that work there is by far the best decision we've ever meet for Rory like pants down, you know, I don't think I could accurately Express how grateful we really are.

34:15 You know, we're just excited, you know that for all the steps that he keeps making and whatnot, but it's been amazing. So thank you again for like the first time for everything, you know that you do and your dedication, you know to all the kids. I can only speak to Rory but I know that that kind of crosses over with every can, you know, and now you kind of monitor the whole time about Center, you know, making sure everyone's getting the best and thank you know when he ages is a hit the brakes.

34:58 I know you were holding it. I'm holding a back but only

35:12 I don't know what we would do without you everyone there has just been amazing. So you and Ariel are great parents and support p.m. At home as you know.

35:29 My job a lot easier honestly, so, thank you.

35:37 Thank you. Thanks.

35:40 Thanks for doing this with me and I appreciate that.

36:03 I will I'll put where no one else can see it.

36:08 But I