Episode 261-The Voyage of Caregiving and Legal Planning for Special Needs with Vickie Rubin

Navigating the complex currents of special education and parenting a child with a disability can feel like an insurmountable challenge, but Vickie Rubin has charted this territory with grace and resilience. Her journey, which encompasses both her personal life as a mother to Jessica and her professional career as an advocate, is rich with insights that offer support to families on similar paths. In our heartfelt conversation, we peel back the layers of family dynamics, the weight of tough choices, and the lifelines of humor and hope that sustain those in the thick of it.

Raising a child with a disability often reshapes a family's world, something Vickie Rubin knows all too well. She opens up about the strain these challenges can place on marriages, the unique experiences of siblings, and the vast landscape of emotions that accompany caregiving. Siblings, the unsung heroes in these narratives, bring forth a tapestry of resilience, as they navigate their own social worlds while supporting their family. As a caregiver myself, I interweave my experiences, reflecting on the profound lessons in compassion and the subtle shifts in perspective that shape us.

Stitching together a future for a child with special needs encompasses more than day-to-day care—it lays in the foundation of long-term planning and the cultivation of independence. Vickie takes us through Jessica's journey to build her own community and find joy in her everyday life through music therapy, technology, and friendships. We also illuminate the crucial role of special needs attorneys and the establishment of a Special Needs Trust, key components in securing a loved one's financial well-being. Vickie's engagement with her audience extends beyond our conversation, as her bi-monthly blogs and memoir, "Raising Jess: A Story of Hope," continue to offer resources and solace to families navigating this complex world.

Transcript

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Parenting and Advocacy Against Disability

Speaker 1 0:04

Welcome to the SJ Childs Show , where a little bit of knowledge can turn fear into understanding . Hello and thank you for joining the SJ Childs Show today . I'm really excited to start this conversation with Vicki Rubin . We've already had a really delightful conversation this morning . Whatever time you're listening , actually we're really thankful to have you here today . Thank you for taking the time to be here . Please just introduce yourself and let us know a little bit about yourself and why you're here .

Speaker 2 0:59

Well , first off , thank you for hosting me and for your flexibility , because we had to reschedule so I thank you for that too .

Speaker 2 1:09

So my name is Vicki Rubin and I have a couple of hats that I wear . Most importantly is my mom hat . I have three children . My oldest has a rare chromosome disorder , and then I talk about that a lot . I have three grandchildren . I have two dogs . I married 44 years . I have to say that I sort of said that first Married 44 years and I had a career . I have my master's in special education and during my career we were funded by a New York state grant and I worked with families of individuals with disabilities , kind of pointing them in the right direction . What services are out there ? What are the regulations ? Just trying to help them understand the journey that they're going through . And then I retired , and then I guess I failed retirement because then I wrote a book , and so my book is I don't even know if you can see it Raising Jess , a Story of Hope , and it's a memoir about our family .

Speaker 1 2:14

So that's me in a nutshell , it's so nice to have you here and that's so much experience and information that you've gained over that time period in so many different avenues . And especially when you work with so many different families , you have that opportunity to really see the diversity and to see the need for support and resources in the community . Did that help ? Were you able to kind of maybe see what was missing and tell them these are some things that maybe you guys can implement , or things like that ? What did that look like ?

Speaker 2 2:55

I think families had an easier time listening to me and some of my colleagues because we were also parents , and I think it was really important when some of the staff who weren't parents would say , well , why don't you try with this , why don't you try that ? And the family member would be like , well , you haven't walked in my shoes , but because we had walked in their shoes , I believe it was easier for them to take it . It's not that we were giving advice , we were giving information . But when you think about it and you know this , you have a new child and no one gives you any kind of manual for taking care of your child and you bring this baby home . Okay , then what ? So you try to figure that out and then you find out your child has a disability and all of that is added . So and include , when it's the young children , it's also searching for a diagnosis , it's learning about all the different supports that are out there . So what we did ? We help people's hands figuratively yeah , it was all done through phone and presentations and help them .

Speaker 2 4:11

And there were some families . They would ask a question , you would give them the answer and they're on their own . Fabulous Other families . They really needed more of your guidance and yes , you're right about meeting all kinds of families from different economic , different . You know it was . It was different Everything everyone called us at all different stages of their life and it was so . It was extremely rewarding to be able to help people and explain the very , very , very complicated New York state regulations and federal regulations on special education and try to get it to a point where it made sense for the child that we were actually talking about .

Speaker 1 4:55

That's incredible and good on you , for you know accessing that information and learning about it , and I'm sure you had to stay on top of it , ever changing , and you know things like that . I was a paralegal . I understand the ever changing legal aspects of things , so yeah , and the interpretation , yeah , you know it's , it's okay .

Speaker 2 5:21

The law states this one sentence and someone interprets it this way and someone interprets it that way , and then , as you said , and then they change the whole thing . Yeah , you have to start all over again . It's really complicated and and for families who are just learning that their child has a disability to have to deal with all of that is it's it's very challenging .

Speaker 1 5:48

Yeah , definitely . So you get through that career and you're settling into retirement failed retirement . And you decided what then , kind of , was going through your mind ? Where was this fire within you to write a book and start this new journey ?

Speaker 2 6:09

So when I talked about this , my retirement lasted a day because I pretty much started right away . But my mom always said to me you should write a book and , as you know , I was mom of three kids one of them is in a wheelchair and I was working full time and I kept thinking I'm going to write a book . I can't even get through the day .

Speaker 1 6:32

How am I going to write a book ?

Speaker 2 6:33

And I almost resented it in a way . And then I retired and my kids bought me old school dictionaries , the stars paper pen instead of write your book , and I thought I don't know how I'm going to write this book . But day one , eight o'clock in the morning , I woke Jessica up and decided what she was going to wear , put her on the book . I had no idea . And then my daughter gave me a book and it was written in essays and then I realized I write in essays because I had submitted other essays throughout while I was working . I would have something in a newspaper or a magazine and that's my quote unquote . John Ryan is writing essays and I thought I could do this book in essays . And so I woke up every single morning about six , six , 30 , and I would write . I'd write for about two hours and then my first editor was my husband and it sounded accurate to him and interesting to him . It went through and then it went to my son who is , I want to say , judgmental .

Speaker 2 7:44

One of my kids say he's tough , and when he read it and he liked the chapter , I was like , yes , and then my mom developed Alzheimer's when I started writing the book and so I would send that raw chapter to my dad and he would read it to my mom . So she did pass away before it was published , but every single chapter was read to her and she got on the phone at the end and said in her hauntingly voice love your book . So she knew , she knew I wrote a book and she knew that you know a dream that he had had for me and ultimately I had for myself . And the book , the book gives hope . It's heartwarming , it's funny , but it gives hope to other families who have children with any kind of differences . But it also is an important book for grandparents and siblings .

Speaker 2 8:52

I do an exit interview of my oldest daughter's siblings , kind of like when you go to a , you work for a corporation and you're ready to leave and they say , okay , so how did we do ? And kind of did that , although there was no , I couldn't make any improvements after because I was done and we talked about their life and what it was like growing up with a sister who needed so much , so much assistance , and so the book really is relatable to a lot of different people . I love that , Aw thanks .

Speaker 1 9:33

Can you tell us a little bit about the disability that she has and kind of what that looks like for her and her daily life ?

Speaker 2 9:43

Yes . So when Jess was born and I know a lot of families go through what I'm going to talk about I had no experience with children , but she seemed different to me and I went to the pediatrician almost every month and said something's not right . And he's like , well , you have anxiety , you need counseling , he's fine . And I said , yeah , I probably did need counseling , but something's not right , something's still not right . And we went back and forth like this for six months . I would go there that day he would say , yeah , he's doing great , and I'd go home and feel really good and then the next day I'd be like , no , it's not right .

Speaker 2 10:33

So eventually we went I'm originally from Long Island and we went to a hospital there and she was full , jessica was fully evaluated and they said he's delayed in every single milestone . So then I came back I live in Western New York came back to Western New York and then we started getting therapy , trying to figure out a diagnosis . He originally had the wrong diagnosis a genetic deletion of they thought of the FIS chromosome , and we didn't get the correct diagnosis until she was 21 . And they were science pain and they were able , and my neighbor happened to be a geneticist who said hey , there's this new tool . I really want to do a blood test on Jessica . And we found out what she had . And the reason I kept searching is because I had other kids and I wanted to know are my husband and I carriers ? And if so , then everyone's going to need some genetic testing . Unfortunately , we were not carriers , so everything worked out okay .

Speaker 2 11:49

So Jessica has something called ready the deletion of the long arm of the first chromosome is 1q-43-44 . And although I might sound like a doctor right now , I know nothing more about genetic than what I just told you . But each chromosome has two arms . Her piece is missing from the long arm and it's important pieces . So right now Jessica's 41 . And she is , okay , the brightest star in a room and she when she's happy to see you , there is no missing that and she just she exudes love . So she does not speak in words but she speaks in facial expressions , giving out her arms for a hug and all things like that . But she also can hum about 25 tunes and she takes music therapy and she's learning new songs .

Speaker 2 13:02

And just one more thing when Jessica was young and she received a diagnosis that was pretty tough to without you know making the right rounds , pretty tough about her cognitive abilities , I mistakenly thought she's not going to learn anymore . This is she's done . That was such a mistake because she's 41 years old and she's learning new songs . She can pull a three-point turn in her wheelchair , which she didn't learn till about seven years ago . I mean , like a real when I'm around . She won't do it , but I have her on video doing it . That's great . So she needs all assistance with all daily life skills , from feeding and dressing and toileting and pretty significant challenges .

Speaker 1 13:56

Oh my gosh , bless your guys' hearts . And it's the beauty that can come through in an individual who can't communicate with their words . And you have that . I mean , it was only four years for us , so I just have no idea what it would be like for 41 years . But in just being able to understand the communication he was giving to me in that short time period when he was nonverbal , was I mean , and he's still semi-verbal today . It's not like anybody can actually have a complete conversation with him or anything but that you read .

Speaker 1 14:40

But you read him , yeah , yeah , you do . And , like you said , when he lights up , you're just like it makes everything feel good . Everything else melts away . You're just like , oh , this is , this individual has like the highest vibrational experience in the on the earth and , as other people might look and see how it might look devastating , you actually see how incredible and how like amazing they are and I love that . I love that we can see beauty in places that other people may not be able to .

Speaker 2 15:19

And I know we're using the word love a lot , but I love that you said that , because there the Jessica can do something that made other people seem like big deal or so what ? And the joy as a parent when she accomplishes something or does something different is off the roof . I remember when she was young and we used to walk , I used to push her in the wheelchair in the mall and she would turn around and look at me and sometimes she would go mama , mama and I , and I would be so thrilled and I would look around like why isn't everyone just like looking this is so amazing ? Yeah , it's unrealistic , like it's amazing , but yeah , it's . But that's another piece that I like to that the book . I hope .

Speaker 2 16:16

The message is our life and maybe your life is not the life that you plan for or expected , but that doesn't make it bad , it just makes it different . It's just it's a different but beautiful life . And I think a lot of people when they look and say they feel bad for you , no , don't feel bad . Yeah , absolutely , we're good .

Speaker 1 16:40

How , if anyway at all , how did it affect positively or negatively You're sounds like not a negative at all but your relationship with your husband and , as spouses , like how did you handle working through that together ?

Speaker 2 16:56

And I do talk about that a lot in the book the Marriage Struggles we had . We are always on the same page of our love , devotion of Jessica . But we do things very differently and there was one time I remember I was always when she was young I wanted to fix her . I just thought I was going to fix her and so her room looked like a therapy room . I had charts and this and that . And I remember Mitch is sitting on the couch with her watching football and I said what are you doing ? You know , you should at least be trying doing something for some stimulation . He's like no , we can sit on the couch and have father daughter time and do things like that . So that we had a bit of a different philosophy with that .

Speaker 2 17:54

But it is a challenge

Family Dynamics and Resilience

Speaker 2 17:56

. Like we were unable to go away on family trip because not only was it was really hard , but Jessica I'm not so sure she would enjoy all the tossing around and it's too hard . It was , it was too hard . So then I would , you know , go away with the other kids or admit to stay home , or vice versa . There were times when he's an outdoorsman , so he would go and do his outdoorsman thing and I'd be home with the three kids and sometimes it would be for three or four days and that was a struggle . So there were definite struggles and we went to counseling and we really tried everything and one of the things my daughter said in her interview which I'm using the love word again that I love that she said was that we showed that , no matter what , we could stick it through and come out the other side .

Speaker 2 19:01

So , yeah , there were arguments and there was differences of opinion and but we were able to really stick together and do what we needed and now married . You know , 44 years . I'm knocking on wood .

Speaker 1 19:16

Goals , congratulations .

Speaker 2 19:19

Thank you . So , but it is . It's hard for families and there's a higher incidence of divorce when there's a child with a disability .

Speaker 1 19:29

Yeah , yeah , it's really . I am so lucky and , as you , you know , heard in that interview with my own husband that we've just kind of the same way of just always been on the same page with the love and devotion to our family members . And you know , he had a sister with Down syndrome and she passed away in 2013 , I believe , but in her later years she also , like , had dementia and Alzheimer's and and I cared for her here in the home and she was the same , you know , needed 24 hour care for everything and you know , it really , I think , showed my kids at the time I think our daughter was maybe 14 , you know , two and four or something like that there's but even if the little ones don't remember giving that experience for the older one to be able to see , like the devotion , like you said , to take her to care for her in any way she needed to be , and it just really is such like an interpersonal growing experience that it's hard to relate with other people other than people like yourself who have been in those exact shoes , like you said , and that's interesting . I'm going to revert back to something you said at the very beginning and that was when you said your staff that people really had a hard time with listening to people who hadn't had children but were still giving advice . And I had that same problem .

Speaker 1 21:14

I remember once having a therapist come over . She was a parent coach . She didn't have kids and it was very odd to me that I would be parent coached by someone decade younger than myself , without children , without an autistic child , that was staying up all night long and giving advice like put them in their room with nothing and lock the door , like that's not happening . You don't know what you're talking about . Yeah , how's that ?

Speaker 2 21:45

going to work , oh my goodness so .

Speaker 1 21:48

I can totally appreciate that . Now would she be great for some families who maybe just needed a little bit less complex advice , maybe so . But there's that element of having gone through it and be able to take real living experience with into that knowledge with you . That is so different , so vastly different for people . What about ?

Speaker 2 22:18

oh , go ahead . Oh , I found that a lot of people in the field had direct experience . They either are sibling , they're a parent , they're an aunt , they're a grandparent or they grew up with somebody . So a lot of people saw the love and care and decided this is what they want to do in their field .

Speaker 2 22:44

I also wanted to say to what you were saying that I felt there was two kind of calls we got . So if you got calls for information or , as you just said , like other types of information , yeah , you don't have to be a parent for that . But I felt like I was able to get away with saying things . Like I used to say , and I'm going to say to your audience I thought it was really important that my husband and I had one day a week like a date , and we couldn't always get a babysitter , so maybe we would have like the date after the kids went to sleep , but one day a week . And I think if I had said that to other parents and they would have been like are you kidding me ? Do you know how hard that is ? I would have been able to say , yeah , I do so where is ?

Speaker 2 23:33

someone else who didn't have the experience would not have been . So I was thinking more of like I was able to say things , more things because of that , yeah no , I love that and I completely agree with you on that end .

Speaker 1 23:49

So , and especially after getting my own understanding that I was also on the spectrum and being able to say , oh okay , now I can look at this from a whole new perspective , from a personal , very personal perspective , you know , even as a child with extra sensory hearing and things and just very high sensitivity , and so I was just thinking about that earlier today . The high sensitivity hearing part of that's interesting , but totally not on that topic . What kind of experiences ? And now that you're you've did in this exit interview , it's kind of a perfect time to lead into this question what kind of experiences were your children , your other Jessica siblings , say that they had in their life , you know , growing up with her ?

Speaker 2 24:43

So my other two , carly , who is 36 right now and Alex , who was 39 and both married and both have children , something that Alex told me . He's extremely social now and has a gazillion friends , but in high school I think he may have felt socially awkward , so he would offer to babysit a lot so Mitch and I could go out . And later on , when I did that interview , he said maybe I was doing that , so it was more of an avoidance of going out . And as a parent , if I had gone back and , you know , enabled to fix this , I would have thought , well , maybe we should have encouraged him more to go out , whereas instead Mitch and I needed the break so bad , we just kind of jumped at it . My daughter became a physical therapist . I think she was always watching a lot of the things that we had to do with guests and maybe saw that that is what she wanted to do .

Speaker 2 26:03

This kid said and it really surprised me and I hope they're telling me the truth , but both of them said that they didn't feel like their life was that different and Mitch and I had this philosophy of we're going to do everything , it's just going to take longer . And so , you know , my husband was the coach for my son's baseball and my daughter to travel soccer and just came to everything . And yeah , it was often I mean , we were that family . We were definitely , oh , there they come , but we did everything . And so they both said , independent of each other , they didn't feel like they missed out or that Jessica got more attention and she did , she got more attention . There's just no getting around that .

Speaker 2 26:58

But my son and I both like Broadway , so every summer he and I would just go to New York and go to a show and that was his thing . My daughter and I like to ski , so we would do that together . So it is important to be able to find quality time to spend with your children , who do not need services , because they need respite too . They . It's not just the parents that need respite , but the family sometimes needs needs some respite and I think I answered your question .

Speaker 2 27:31

I think I went on a tangent .

Speaker 1 27:32

It's totally great . No , these are the way these conversations are the most fabulous , right ? Because , as you were saying that , I love that you said , because I want to make something clear for anybody that doesn't have a child with high support needs and being able to give them that attention and support that they have to have , there's not a question , there's not a not giving it option for them , but to have your kids be empathetic to that or now to see that your intentions weren't to give a child more attention , if you will , but to have to have to give those support systems to where they were needed . So I just love that and I wanted to just point that out to just any listener because I think it's so important to to make sure that that is understood .

Speaker 2 28:22

But one thing my son said . It made me laugh . He said I would like to say that Jessica gave me more . I'm not going to say it like he said it , because he said it funny . He was like I'd like to say that Jessica gave me more patience . But I have no patience though .

Speaker 2 28:35

But , but I think what he meant was being around Jessica should have given him more patience , and maybe could have been if he , if he , were a different kind of person . None of us are very patient , so that's , that's also a genetic thing . Yeah right .

Speaker 1 28:51

Well , and you know , I kind of like that . You also said that they didn't feel different because when you really look at it from an outsider perspective , their life is just their life and that's normal to them and what might seem different for others is actually normal to the family that are actually going through it and it doesn't feel different to those people , individuals going through the situation . So that's a really unique perspective to be able to have , you know . So , now that everybody is grown up and what types of of things like you said , she's learning new songs and things , what other types of interests do does she show you that she has ?

Speaker 2 29:35

So when Jessica was 25 , five families actually a group got together and we , along with a human service agency , were able to build a group home . So it's two miles from our house , the . The funding that we had from New York State at the time is does not even remotely exist , but at that time in 2007 , we were able to get a house that , instead of our children fitting into what the agency could do , the agency was able to fit the needs of the individuals , and so so I do . I do presentations on plan B . What you get families that are my age and children who I mean Jessica's , 41 and and older and older , and families feel the compassionate thing is to keep your child at home , and it is compassionate to , to a certain respect , because no one's going to live forever . That was really hard to understand At first . You think , hey , but no one is going to live forever . If you don't make the plans while you're able to , then your child is going to have to leave as an emergency placement and nothing that you would want for your child's future will be in place . It might be a bed in a house that's miles away or who knows .

Connecting With Special Needs Attorneys

Speaker 2 31:23

So Jessica did move into the house and we found and now I'm going back to your question that she developed a lot of her own friendships . She has friendships in that house and it's so beautiful Her friend Lizzie , for example , and I put a picture out with them . Lizzie is able to speak and she has more well-traveled and social than I will ever be . Yet Jessica and Lizzie together , they look in each other's eyes and Lizzie and they love each other , so they're housemates , they're like sisters , and there's five women in the house . Jessica has met people that are not who I'm introducing her to . She has her own people now , which is great .

Speaker 2 32:19

She also takes music therapy and she loves music and so she can with assistance . She likes to play the piano . There's a lot of assistance , but she isolates her index finger and she knows that she'll get help playing the notes , but she knows what she's doing . She also has an iPad and she's able to do yes and no on the iPad . I was going to ask you about that , that three-point turn . That never happened at home .

Speaker 2 32:50

And when she comes home to visit and I'm sitting , we have an open concept house and I'm in the kitchen and I say come on , jess . She looks at me like you want me to move my wheelchair like myself ? I'm not doing that . I don't know . She's here now , going all over the place . She has developed her own interests and I hope I'm not making it sound like it's Disneyland , because there is a lot of downtime , there's staff . You need a lot of support and it's very hard to get out and to do all kinds of things when you have five individuals that need help . About a year ago I got certified to drive the van at their house , the wheelchair van . So now , like tonight , I'm taking her out to an event . So it's not based on is there enough staff . I'll call up the house manager and say hey , ma , can I borrow the car ? And then I can use the van and take her to more places than before .

Speaker 2 34:01

Give more exposure for her .

Speaker 1 34:03

Wow , do you have trust set up and things like that , If you guys go on that route ? That's something that I just literally this morning was looking up information on and thinking about Special needs trust .

Speaker 1 34:18

Yes , yes and how important that is to , like you said , if you're listening and you are at a point where I mean my son's only 14 , but only 14 is only four years away from 18 . And that's not very far . That's going to go much quicker than the whole 14 years went quicker . So I need to get thinking about that and moving on it sooner than later , and I think it's very important that we just take the opportunity to learn what needs to happen and then financially , take the steps when you can , and so yeah .

Speaker 2 34:53

Have you ever interviewed a special needs attorney or somebody who does that estate planning ?

Speaker 1 34:59

Yeah .

Speaker 2 34:59

I have a great one , so I'm so complicated , but yeah , it's so important it's really important because you have to make sure that your child , if they get any money , that it's they're not going to lose their services . It's it's their benefits . It's very common , it really is . It's really so complicated . I'm like I'm so glad you guys understand this .

Speaker 1 35:25

Yeah , I don't they . Goodness for attorneys . I know I'm like I being a paralegal . I think it's funny that I , like literally in my heart , love attorneys and I'm probably one of the only people that say that you know , but I have no problem with attorney .

Speaker 2 35:39

I'm very thankful for them because they do all these things that I wouldn't even attempt to understand .

Speaker 1 35:45

Yeah , they really hold their standard . Tie in there I the regulations and just those things that you understand . Even you know closer than I do as far as that goes . So that's really amazing .

Connecting With Author Vicki Rubin

Speaker 1 35:58

And where can people go to find your book and get in contact with you If they ? If they want to ask questions or support you ? What can we do to do that ?

Speaker 2 36:14

So I get calls and not calls as much . I get emails and messages from families and I'm always happy to help families when I can . I have a website , and it's wwwvickirubincom , and I also I do two , probably two blogs a month and on all different topics . A lot of it is about Jessica , but I try to keep up be and with a little humor or a little heartwarming kind of blogs . But on that , there on my website , there's a way to contact me and there's also I have a page of podcasts that I've done so that people could hear the different podcasts . Source paid . So parents can , you know , find resources , find their resources , and then for my book you can get a signed copy from my website . But you can also go on Amazon , barnes and Noble Walmart . If you just place that you a story of hope , and it will pop up where you can get my book .

Speaker 1 37:31

I love that . Vicki , thank you so much for your time today . It's just been such a pleasure getting to know you , and I look forward to staying in touch .