More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade

[00:00:00] I'm Effie Parks Welcome to Once Upon A Gene, a podcast. This is a place I created for

[00:00:09] us to connect and share the stories of our not so typical lives. Raising kids who are

[00:00:15] born with rare genetics and drones and other types of disabilities can feel pretty isolating.

[00:00:21] What I know for sure is that when we can hear the triumphs and challenges from others who

[00:00:25] get it, we can find a lot more laughter, a lot more hope and feel a lot less alone. I believe

[00:00:32] there are some magical healing powers that can happen for all of us through sharing our

[00:00:36] stories and I'll take all the help I can get. Once Upon A Gene is proud to be part of

[00:00:45] bloodstream media, living in a family affected by rare and chronic illness can be isolating

[00:00:51] and sometimes the best medicine is connecting to the voices of people who share your experience.

[00:00:56] This is why bloodstream media produces podcast blogs and other forms of content for patients,

[00:01:02] families and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com

[00:01:07] to learn more.

[00:01:08] Hello friends welcome back to the show I'm Effie Parks your host I'm so happy to be here

[00:01:13] thank you for joining me. I had the opportunity to talk to my pal Sean from the two disabled

[00:01:19] dudes recently so please head over to whatever podcast app you prefer and check out the two disabled

[00:01:25] dudes podcasts in general but to hear my little conversation that I got to have with Sean. Also

[00:01:31] the disorder channel has dropped a new film called Life After Diagnosis Day it features a several

[00:01:38] of my favorite advocates of all time including Jennifer Sills and Melissa Hioko sorry if I said

[00:01:44] that wrong Melissa go check it out it's an awesome film of kind of like the where they now also pain

[00:01:49] points is that funny comedy show I've mentioned a couple times there are like five minute tops

[00:01:55] episodes and they usually just pick a topic and joke about it for a while has also some of my favorite

[00:02:01] advocates on it like Patrick's James Lynch and Kay Weaver and Billy Shore anyways go check it out

[00:02:07] they actually released two of those episodes on YouTube so if you don't have a fire or a roku

[00:02:14] you can go get a little taste of it over there on YouTube the disorder channel. So to today's

[00:02:20] episode I'm so excited I have a friend on the show a neighbor on the show a fellow rare mom

[00:02:27] on the show she's also an author and I'm so excited to introduce you to her if you haven't already

[00:02:33] met her and to let you know a little bit about her book it's really really special she's one of

[00:02:39] those moms that's further along in the journey than some of us listening her her child is an adult

[00:02:45] now so she has a very very very important perspective especially to the parents who are a little

[00:02:51] further behind anyways she wrote an exquisite book and let's see it's called more of everything

[00:02:59] how I became a better parent to my child with extreme special needs by lifting my emotional burdens

[00:03:06] you have to get this book I'll leave all the all the links in our episode notes today please

[00:03:12] enjoy my conversation with Singet mom Jayney Reed hello JR welcome to the podcast hi Fee thank you

[00:03:20] so much for having me I'm really excited to be here yes it is my absolute pleasure interestingly

[00:03:27] enough you and I met in like a what an angel aid kind of mom's retreat thing online during COVID yes

[00:03:35] and you said sin gap in when you were introducing yourself and I think I messaged you and I was like

[00:03:42] hello and you know we met a couple times after that and I met you in person finally at the

[00:03:48] sin gap conference last December in Nashville so that was very cool yeah so it's just an interesting

[00:03:54] road and all the enough you are also my neighbor we live in Seattle so that is so super cool it really

[00:04:00] is and I think you knew Mike pretty well by the time like when I said sin gap right you already knew a lot

[00:04:05] about because most people don't know much about sin gap so having you jump on that was really

[00:04:11] was really great yeah you were probably like who is this crazy stalker lady why does she know

[00:04:16] no it's like such a lonely road right you're like oh somebody knows something about this this

[00:04:20] let's go let's go friend okay well so for anyone who doesn't know sin gap obviously is such a machine

[00:04:28] in so many ways but it also produces these advocate these parents who are so highly motivated and so

[00:04:36] deeply involved and it's one of the most beautiful things to witness and it's so inspiring and

[00:04:43] everyone should follow their lead but J.R here my guest today my neighbor and friend is also an

[00:04:48] author and she's a mom who's a little further ahead in the journey than a lot of the families that

[00:04:53] listen to this show at least half of them her son is an adult living with sin gap and she's

[00:04:59] recently released such a gorgeous book called more of everything and I've read a lot of rare disease

[00:05:06] books and I've read a lot of I searched high and low for books before I started this podcast

[00:05:11] and especially before I started this podcast I couldn't find one that I did not want to just

[00:05:16] throw out the window there weren't a lot of books available that really spoke to me and this one

[00:05:23] especially spoke to me and I was telling J.R before our interview that I feel like I've said almost

[00:05:29] all the words that you put on the page that is such a it's like so nice for me to hear that because

[00:05:35] I guess my I tried to put myself on the page and put what I really thought because a lot of times

[00:05:40] we can't say what we're really think right and so I really tried to just take back all the editing

[00:05:46] you do all the self-editing all the self-sensory you do and just say what I really was thinking and how

[00:05:50] my thoughts have changed over time and so to hear that it resonated with you it was really it really

[00:05:56] makes me feel good. One of the reasons it resonated with me so much is because of the storytelling aspect

[00:06:01] of the format you know I love a good story but you did your book kind of like the vignettes right

[00:06:07] like each chapter is a vignette right it was an experience it was a memory it was a moment in time

[00:06:13] in being a mom and raising your boys and I think that it's so much more luxurious to read stories

[00:06:20] when you can put yourself in the setting right right okay let's do a little intro since I sort of

[00:06:26] forgot that part because we were just talking about your book but tell us a little bit about you

[00:06:30] and your family and your boys and then I actually kind of do want to just sort of break down your

[00:06:34] book a little with you. Yeah so JR that's me I am I live in Seattle I married I have three children

[00:06:42] they're all adult sons now all adult men and Joey is our second child so I was a scientist

[00:06:51] I stopped working with my first child and decided okay I'm at the point where I might as well

[00:06:59] just have my kids pretty close together and then go back to work so I had Joey's second and then

[00:07:05] he had delays and we were like well should we have a third or not so there's a whole sort of

[00:07:10] genetics story in there but we ended up having our third child without knowing what was going on

[00:07:15] with Joe and then and then I went back to work a little bit part time in science or not a little

[00:07:21] bit I went back to work part-time once the kids were in school but Joey's behaviors and stuff were

[00:07:25] so difficult that I couldn't really it couldn't really sustain that and so eventually Joey's

[00:07:31] behaviors his self-injury and aggression were so great that we ended up having him go to a group

[00:07:38] home which was really really good for him and really really devastating for me and I spent then a

[00:07:44] few years just trying to come to terms with that and be the best mom I could to the other two

[00:07:48] boys who are still at home and now they're all out of the house they're all adults so I found that

[00:07:54] writing was a way that I could kind of try to go back and say what what happened and who am I

[00:08:00] and how how am I okay with everything and that's what I did that's what the book is about for me.

[00:08:05] When did you start writing like as I was reading your book I was like did she journal like is this

[00:08:11] how she remembered these moments because when you started telling these stories I started remembering

[00:08:16] my stories right which is a natural thing that happens but I was like it's hard for me to get those

[00:08:21] memories if I don't have like something concrete so were you writing something down to remember

[00:08:26] the stuff later to have his like this content or did it just kind of flow through when you started

[00:08:31] writing. Yeah, I mean certainly I've like written on scraps of paper and I have about 30 you know

[00:08:37] journals that are a quarter of the way written and you know like I have I have a lot of stuff like

[00:08:41] that but when I really started writing was when I only had one kid left at home and he was in high

[00:08:48] school I decided to take a writing class like a fiction class and I don't know why I just thought

[00:08:52] I I don't know why who knows why we do these things I did and of course I can't I can't write fiction

[00:08:57] like I can't write a single I cannot think of a single thing that didn't happen so I just started

[00:09:01] writing things that had happened and so that's how it started was I just on a large took a fiction

[00:09:05] class and then I couldn't stop writing about what had actually happened so. This is a totally separate

[00:09:10] episode because it would require so many questions and really delving into it but you touched on the fact

[00:09:15] that Joey lives in a group home and I know so many parents kind of maybe like stopped breathing

[00:09:20] for a second when you said that yeah and want to know more and want to know how old he was and what

[00:09:26] you felt about that and how you came to that decision which we can definitely talk a little bit about

[00:09:31] and we can also have another episode if y'all want to hear J.R. talk about that decision that she made

[00:09:36] but maybe just kind of a sprinkle of it for now. It is early years he he just wasn't developing

[00:09:42] and he was really sweet and then he started kind of biting on the back of his hand and he wasn't

[00:09:48] he couldn't hurt himself and I couldn't get him to stop doing it like I knew that was going to be

[00:09:52] bad later you know when he was three and four doing that I knew that A. He wasn't hurting himself B.

[00:09:57] He was trying to communicate to me or you know maybe he was trying to communicate maybe

[00:10:02] maybe his hand itch you know like who knows and I knew that later that would be difficult right like

[00:10:06] you know that that once you're an adult that's not it that's not a behavior you can really sustain

[00:10:11] but no matter what I tried I wasn't really able to get him to stop doing that and then as he aged

[00:10:18] as he was in a school situation that was really stressful for him it just got worse and worse and

[00:10:24] he he got to the point where his hands were bloody and infected and and I was you know the doctors

[00:10:29] would tell me oh well keep them from biting his hands you know so I was holding him down on his

[00:10:34] on the bed with a blanket between us and you know like it was really bad and and he would fight me

[00:10:40] you know he would fight me and so we tried to get funding many many times and weren't getting it

[00:10:48] if your kids on any kind of meds you have a nurse line that you can call and so I would call

[00:10:54] and they'd always be like are you safe and I was always like yeah I'm safe yeah yeah safe I just

[00:10:58] don't know what to do right and then finally one day they're like are you safe and I was like no

[00:11:02] I'm not safe and it was that was the point like that's a that's kind of like a go-no-go situation

[00:11:08] which I wasn't really understanding you know as far as getting services and so this is my

[00:11:14] understanding of it anyway like I'm not a social worker I'm not a DDA person like I don't

[00:11:19] really know what was happening but that really seemed like it to me that as soon as I said I

[00:11:23] wasn't safe he wasn't safe that they hopped to it and found they said oh by the way there's

[00:11:29] actually some money right now like we have this really short window with money so let's get you

[00:11:34] some and I was like all right and then they wouldn't give us money for in-home and so they gave

[00:11:39] us money for out of home placement and I was just like you've got to be kidding me again like I didn't

[00:11:44] know what to do right like he like we had gone through all the babysitters I've always trained I've

[00:11:49] always hired and trained babysitters and like there was no one there was no one I could hire

[00:11:54] and trained anymore like nobody would do it and because it was too hard a job right and so yeah

[00:11:59] that's the point at which we tried it and I was like and the thing is when you try it you can

[00:12:03] always bring them home like you can say like okay that wasn't working so it wasn't a one-way ticket

[00:12:09] you know it wasn't a forever thing so I said yes but then after he left three four days later he'd

[00:12:14] stopped biting his hands so wow it's almost laughable to think of the enormity that a mom and a

[00:12:25] child is living with you know at home in dealing with these types of behaviors and being told over

[00:12:31] and over you know what to do or how to how to calm the situation and it's just so much bigger than

[00:12:39] people on the outside can really imagine including maybe some of the professionals who aren't really

[00:12:44] there right day-to-day well right and so of course we went to lots of appointments right he's

[00:12:49] always fine in the appointment and then we'd go we drive down I don't know if you've been to

[00:12:54] well let just imagine wherever your doctor is you've driven about six to eight blocks away

[00:13:00] and then your child starts like screaming kicking the back of the seat bite it you know like

[00:13:05] just like throwing a fit right and so it's like yeah you just sat in the corner and played with

[00:13:10] your toy for an hour literally every time that's literally what happens every time it is so annoying oh

[00:13:16] my gosh so the key the key is to get somebody who will come out to your house and watch and so at some

[00:13:22] point we did we did qualify for this like it's called B-Mac I think B-M-A-C this B-Mac guy came out

[00:13:27] and and it was really bad and for three full days like I remember the first day he watched us for

[00:13:32] like three hours or something and then I turned to him before he goes and I'm like what can I do

[00:13:37] and he's like I'm not done watching and I'm like oh I just wanted to throw stones at him you know

[00:13:41] I'm like come on you've got to give me something right and so he had to watch us for three full

[00:13:46] sessions before he would tell me anything so anyway it's uh but then he did tell me things

[00:13:52] and then it did help so shout out to the shout out to the great B-Mac guys guys and girls

[00:13:57] awesome okay well we'll have to figure that out but yeah thank you for that great piece of advice

[00:14:01] there at the end where you said this doesn't have to be a forever decision if it's not working for

[00:14:04] you or your family or the or the child like you can always change it again yeah it's not permanent

[00:14:10] and I think that's a that's a good reminder to have especially with all the extreme anxiety

[00:14:16] and all of the feelings that probably come along with a decision like that so thank you

[00:14:20] you know I think about parents like you I talk about it often the ones with the older kids right

[00:14:24] who didn't have the networks that we have now available at their fingertips like online at least

[00:14:32] and also didn't have the diagnosis until later what was that like when you finally got that with

[00:14:37] Joey and how did that change it yeah Joey was in six was 16 when we when we got the genetic diagnosis

[00:14:44] and I'm a you know I have a I have a degree in human genetics right like I understand genetics

[00:14:48] and I was just waiting I was just biting my time until whole whole XM trio got cheap enough for

[00:14:53] us to just pay for it because I was pretty sure that was going to help we'd had at least four

[00:14:58] different rounds of genetic testing that came up without anything and Joey was born in 2001

[00:15:04] SynGap one wasn't known to be the cause of an autosomal dominant neurodevelopmental disorder until

[00:15:13] 2009 and so anything we did before that wasn't going to work and the things we did right after

[00:15:18] that didn't work either because SynGap wasn't yet like SRF has done a great job of getting

[00:15:23] SynGap on not only epilepsy panels but also ID panels autism panels and so that's kind of like

[00:15:30] the first line anyone any any kiddo who goes to see their neurologist is good it's more likely to

[00:15:38] get one of those panels than the full whole XM trio and so as far as the genetic testing it's cheaper

[00:15:45] it's more efficient it kind of targets what is likely to be the case so I don't know I'll be happy

[00:15:51] when those panels are super outdated right and we're just like I think they're already a dinosaurs

[00:15:59] yeah they are they are well I mean I start I was in science before the human genome was

[00:16:03] was sequenced so right what before before there was even enough computer space to hold

[00:16:08] the information and the human genome so I have a little different viewpoint of it so yeah yes

[00:16:11] it will they will be yes they will be obsolete but not quite yet like we still we still have a

[00:16:17] generation of people who are gonna benefit from it so of course SynGap one gets a parent with

[00:16:22] your background in the in the fold like every time I like see a new on a mic of course they're SynGap

[00:16:27] ians yeah yeah sorry about that I know I know it's frustrating right but see for us whole XM trio

[00:16:34] is what really diagnosis us but for some for some it's really a carry type and almost nobody does

[00:16:39] carry types anymore so that you know that ring disorders are not getting their due right now because

[00:16:45] because people have moved on to other testing techniques so anyway just a shout out for genetics in

[00:16:50] general okay so you found SRF you got this diagnosis it was stunning it was stunning to me that the

[00:17:00] that the genetic report came back with one finding that was definitive like I was sure there'd be like

[00:17:05] 3 4 5 you know findings of uncertain significance and that we'd have no idea what was happening right

[00:17:11] that's what I thought so to get that and then to find and then to read about the biology like of

[00:17:17] course I went and read primary papers about it and to read about the biology of it it was like I just

[00:17:25] I just cried really like for one thing all the times people said to me oh he'll learn you know he'll

[00:17:32] learn to eat when he's hungry like oh no he won't this is a he has a biology that

[00:17:39] that doesn't allow his synapses certain synapses to change like synapses are supposed to change

[00:17:45] if you use them more they're supposed to get stronger if you use them less they're supposed to get weaker

[00:17:49] that specifically does not happen with some of his I'm not going to say all but with some of his

[00:17:54] synapses that is the most beautiful easily understood example like molecular insight into not learning

[00:18:03] that I can imagine that is specifically not learning that is not adapting and so no he wasn't going

[00:18:09] to learn to eat when he was hungry no he wasn't going to learn to tolerate your school day schedule

[00:18:14] you know he just wasn't and and so the things we did like all he did was complain louder so all

[00:18:21] he ever learned to do was complain faster complain louder and that was hard for him too because he

[00:18:25] didn't really have the coordination to do that kind of expressive communication so he got better at

[00:18:31] at saying no in ways that we could believe him oh that's so powerful I feel that I feel that in

[00:18:37] so many ways and it's just such a relief to be able to have that explanation and to not beat yourself

[00:18:45] up as much as you've always had to beat yourself up to get to that next level or to get to that next

[00:18:51] little tiny triumph at home with the thousands and thousands of hours of the things you're told

[00:18:57] to do for your kid yeah exactly well and it's also it also shows like this inherent flaw in our

[00:19:01] early education or early intervention system right you're supposed to get this early intervention

[00:19:06] so that you get better it's like well what if your kids not getting better but they still need

[00:19:10] the early intervention right so they don't get worse or so they have something so they have services

[00:19:16] and so the whole early intervention so that you won't need help later or the whole early intervention

[00:19:21] as long as you're improving it's just such a it's such a biologically it's set up for the

[00:19:28] privilege of the kids that will actually improve yeah it's set up for those kids who get to use that

[00:19:34] that common quip of they'll catch up yeah yeah it's set up for them it definitely needs a

[00:19:40] facelift and I was laughing through one of the parts of your book because you were talking about

[00:19:46] when I think you were early intervention and the therapist asked you what do you want Joey to do oh god

[00:19:51] yeah and I just laugh because like I still get asked that all the time in whatever assessment

[00:19:56] that we're having and it's like well what do you think I want for it to do I mean let's be honest

[00:20:00] what do you think that I want for it to do sure I'm at the point where I know what he can do and

[00:20:06] what he can't do and what he'll probably do blah blah blah blah but like do you really want the

[00:20:11] real answer to that question yeah it isn't set up for kids like ours just like even the therapies

[00:20:16] aren't I mean no almost no therapy I ever took forward to before the age of five was worth any of my time

[00:20:23] yeah and quite frankly there needed to be more than one therapist on Ford because one couldn't do

[00:20:30] the job physically right like it's just not set up for disability right right well there's one

[00:20:37] thing I put in my book which I kind of feel like needs to be my second book which is I just spoke

[00:20:42] about it very briefly but it's like the thing that I did when I wasn't in fear like really early

[00:20:50] on like he just wasn't seeing right and so I think I talk about him like Frank Stripes for instance

[00:20:58] and then putting a blanket over my face did do I talk about that in there oh yeah that was actually

[00:21:02] pretty funny I was like really only only a scientist would be taking this so far that she's

[00:21:08] literally like checking everything off her box well but the point is that is what I did and I'm

[00:21:14] pretty sure that helped and no one has ever backed me up on that and so and so it's like the

[00:21:21] therapy like when you say none of the therapies before five worked it's like yeah because the therapies

[00:21:27] were the wrong therapies right they were like people are therapists aren't understanding

[00:21:32] what development actually looks like and what our kids actually look like so well and you were right

[00:21:38] I mean Joey did notice you right like you found you found moments where because of what you were

[00:21:44] doing and this new thing you were trying was doing something right so there was evidence that

[00:21:52] your funny thing that I can only picture in my mind yeah was was making a difference yeah

[00:21:58] let's talk about the format of your book really quick so again I said they kind of go in these

[00:22:03] vignettes of moments in time that's part one and that's about two thirds of the book is vignettes

[00:22:09] and they start at when he's age four and then there's one they they end at like 1920 and 21

[00:22:15] so at 21 but I love especially and what I think is going to be really valuable to the readers

[00:22:22] after they listen to this and buy your book is the the lists that you make after each story right

[00:22:27] like the reflection that you've had and the lessons that you've learned and the wisdom that you

[00:22:32] gleaned from each of these stories that you tell right really helps people frame it gives them

[00:22:38] ideas of how to reframe things right and I think that's really really useful and it's really only

[00:22:43] with a lot of distance that I can say some of that stuff there'll be a vignette of some

[00:22:49] they're all fairly short some are longer than others and then there's a section called looking

[00:22:53] back and some of that is stuff that well if I was a better writer maybe if I had a better story I could

[00:22:59] have like shoved that in somehow but a lot of it is such like I just wanted to summarize right

[00:23:04] sometimes you just want to summarize something that's burning in your chest to say and so

[00:23:07] that's sort of what the looking back is is like just something I want to summarize about that time

[00:23:12] and maybe what was going on and then the lessons that might take away is those are really specific

[00:23:19] lessons to me and I'm a little bit of as of a you know unusual person and so I don't expect everyone

[00:23:27] to have those be lessons for them but like I said my whole goal in this book was to show who I am

[00:23:34] and see show you how I think and so that is why those are there.

[00:23:38] I know how different we are and I found almost all of it to be very similar to the way that I

[00:23:46] think about things and the way that I kind of would summarize it and so I actually think that

[00:23:52] I saw way more of myself in your thoughts than I expected to and I think that a lot of parents

[00:23:58] also will whether it was very specific to you or not I think it just goes to show how similar

[00:24:05] our situations really are and how our emotional path in all of this is so unique

[00:24:13] that I think you'd be surprised to know how many people would actually completely identify with

[00:24:18] with those things that you made. Yeah and unfortunately it's going to be some of the isolation

[00:24:23] right some of the isolation is just so it's so common. Yeah and I also appreciate that you did

[00:24:30] listed it out because we're busy and like I liked it being like that. I like to just being very

[00:24:35] direct because like ain't nobody got time for that right right right yeah so as a rare mom I thought

[00:24:43] that was very efficient and I appreciated it oh yeah good okay well so that's part one and that's

[00:24:47] two thirds of the book but then part two is just things I just couldn't I just couldn't really get

[00:24:52] vignettes around it so I talk about acceptance and frustration because especially sort of medical

[00:25:00] the medical establishment frustrations and so those two are like obviously really long journeys

[00:25:06] for anyone any family any person any family dealing with rare disease or any sort of intense

[00:25:14] medical journey right and so that's what part two is about and then part three introduces

[00:25:20] coaching and so I went back to the vignette form I had two vignettes that were in the first part

[00:25:26] and I pulled them out and put them in the coaching part because they really show

[00:25:31] my thought processes and how I was like very intentional about what I was thinking and what I was

[00:25:39] asking myself what the what my choice of words were because that ended up having a large effect on

[00:25:46] me at a time when nothing else was helping so at a time when I actually there weren't babysitters

[00:25:52] that I could you know well maybe there were some babysitters but there weren't enough babysitters

[00:25:56] right like when he was six I still had babysitters when he was eleven it was getting really hard

[00:26:00] when I when he was six I just really wasn't sleeping you know and so I would pay a babysitter

[00:26:07] $200 so I could go somewhere and then I'd go to a hotel and then I'd sleep right like and then

[00:26:13] God forbid that you're near an elevator or some you know high school kids are running around

[00:26:17] on the floor because you're just trying to sleep so anyway I got off track but the the coaching

[00:26:24] is what I do now and it's I don't think everybody needs a parent coach but I do think everybody needs

[00:26:32] to examine their own thoughts to see which ones are really devastating to them.

[00:26:41] I saved a couple that I wanted to talk about oh yeah please in one part you said I felt like

[00:26:47] a martyr when Joey was young and it felt good for a short time a real badge of loyalty and hard work

[00:26:52] but it's unsustainable and it's isolating and I see that so much in our families across the world

[00:27:00] and it's not necessarily a conscious thing um and I think it's I think it's a battle thing right

[00:27:06] it's a battle and it's also cultural like people people don't know what to say and the nicest

[00:27:10] thing to say is to make you out to be a martyr and everyone wants you know I mean just look at

[00:27:14] look at all the all the stories of breast cancer and like all the stories of being a good mom

[00:27:21] are sacrifice all our story all our regs to rich histories are a young boy who has a single mother

[00:27:29] who gave everything for him and now he's a success like that like that is the American regs to

[00:27:35] rich history right and it's not reasonable it's not reasonable what about her what about like you

[00:27:42] shouldn't what about all the people who didn't start with nothing and are just like trying hard

[00:27:46] every day so the martyrdom thing it's very hard to get away from it in our society because

[00:27:55] that is the way people show that they care is by telling you how good you are and telling you

[00:28:00] that you're the only one who can do this and telling you that you can do it without help because

[00:28:06] that's because you're this amazing martyr basically and it's isolating because it others you

[00:28:13] it like it takes them out of the equation they don't need to come help you now and I love Effie I

[00:28:18] love your your graphic on how to help someone I mean that is that is so spot on thank you I was

[00:28:26] gonna say this martyrdom of the rags to the richest story like you said is yeah it go

[00:28:31] inside with also not being able to ask for help it's such a common thread and families are

[00:28:37] debilitated they literally cannot ask for help and it goes along with this you know whole ideology

[00:28:44] of like they have to be the savior they have to do it they're strong people keep telling them

[00:28:48] they're strong and that their kid is so special and that no one else knows their kid and it's like

[00:28:53] yeah and I need somebody else to know them like I need someone else like how much time do we spend

[00:28:57] every day trying to understand our our different children you know and we need somebody else to

[00:29:03] get in there and try to understand them too it's really complicated and I think that it actually

[00:29:09] just has to be an active switch and a choice and a direction that you take because it's it's

[00:29:15] life or death as a caregiver and I feel confident in saying that in many ways it is life or death

[00:29:21] it also comes from early on when things are hard but doable I got very you know sort of perfectionist

[00:29:28] right and I wanted things a certain way and I wanted it like this and no you're not good enough

[00:29:32] to do this with this person you know with my precious child and I wasn't giving enough I wrote

[00:29:37] I had too much control of the situation and then as I was as the job became harder and harder

[00:29:43] as the sleep deprivation got more and more intense as the behaviors got more and more intense

[00:29:50] it all gets harder and so then as you're unwinding the perfectionism it's you're just like trying

[00:29:57] to survive and so like there's a story in there about my son like taking my son into the pharmacy

[00:30:03] when he didn't want to go and it's like I didn't have someone that could watch him I tried I did

[00:30:09] have somebody the day before I did go to get the medicine the day before they were out they didn't

[00:30:13] have like they were supposed to have the medicine they didn't like this happens right you go to the

[00:30:17] pharmacy they don't have it like sometimes that happens it's not anybody's fault it's just the way

[00:30:21] the world works so then the next day I take my son in and he doesn't like it we have this bad experience

[00:30:29] and um and I just don't know who can help me literally don't know who can help me I probably could have

[00:30:34] left him in the car but then like I personally know someone who used to leave her kids in the car

[00:30:40] and the police came and CPS came and you know it's like yeah you shouldn't leave your kids in the

[00:30:45] car well my son was 11 he looked old enough you know he probably would have stayed on his iPad

[00:30:52] but how do you know I I have no idea where he would have gone and he probably would have gone

[00:30:55] on the street he probably would have gotten to find a bus like he could have gotten on a bus you

[00:30:58] know it's like you see what I mean it's like doing the easy thing is it's like the thing that might

[00:31:04] go wrong is just too bad it's too big it's the thing that you're gonna be on the news for exactly

[00:31:09] it is and let's actually talk about this story a little more because uh I think that it is one of

[00:31:14] the greatest stories in the book because it is such a common daily existence for our families

[00:31:23] and not just going to the pharmacy but in literally leaving the house anywhere which is one of the

[00:31:28] reasons that everything is so isolating and then just ends up being kind of like this big hole

[00:31:34] darkness but you have to go through so much including just mental preparations and planning and timing

[00:31:43] and getting a person ready that can't dress themselves or whatever to finally make this huge journey

[00:31:48] outside across the sidewalk into the vehicle bring all the equipment that you need be somewhere on time

[00:31:56] and then to not have the ability to just drive through or to run in or to just have all of these

[00:32:02] conveniences that are so common for most people but you have to bring this situation into a public setting

[00:32:09] and you have to use all of your powers to make sure that it doesn't go completely into a giant storm

[00:32:17] and one you don't really control that but you can help to at least notice it ahead of time to at least

[00:32:24] run in a band and ship all of that is so incredibly exhausting but it also takes so much skill

[00:32:32] and so much calmness and so much awareness and then you're just trying to do a regular thing

[00:32:38] and then it can frustrate you if you think about it that way and it just can tumble and tumble

[00:32:41] and tumble and grow into this big monster yeah yeah yeah and then you finally make it into this

[00:32:47] pharmacy and you get what you need and Joey gets frustrated and it gets bad and so you're getting him

[00:32:52] back to the safe zone and then there's Deborah who's making you feel like everything you're doing

[00:33:01] is wrong and that you should be ashamed and embarrassed and that your kid is not happy and you

[00:33:06] must be hurting him and what's going on why are you such a bad mom when you're literally a super

[00:33:11] human herculean right like being taking care of the entire planet in this moment and someone

[00:33:18] scoffs at you and it can just make you never want to leave again yeah it's really true for people

[00:33:26] who have younger kids I don't know if you'll feel this yet but certainly people who have any kid

[00:33:30] who's like pretty strong and aggressive it's like when your kid fights you of course you're trying

[00:33:37] to protect your child of course you're trying to do everything to calm them down but like I'm still

[00:33:42] a person I'm still a person who is in the animal kingdom you know I still have all the instincts

[00:33:50] and hind brain and amygdala that all the other pride mates do right so I still am at this person

[00:33:57] who is trying to respond and trying not to get hurt myself and trying to write and so then you

[00:34:04] have all this cortisol and all this adrenaline and you're just trying to make good decisions and

[00:34:08] it's just like getting him back to the car having him be like calm like you can tell like you can

[00:34:14] tell with my son my son does not hide who he is he was pissed as anything and then he was calm

[00:34:20] and he puts his head he puts his forehead on the window he looks out the side window you know

[00:34:26] he's like great this is what I wanted you know we're back oh that story was just like really

[00:34:32] powerful and it was relatable in so many ways like I said just like the efforts of getting anywhere

[00:34:37] also I have a reflection in there like yeah what should I have done differently there's no practical

[00:34:42] thing I think I could have done differently and I didn't trust anybody before I didn't have hope

[00:34:48] after you know it's like I felt ashamed that this was my life not guilty that I had done the wrong

[00:34:56] thing I also like your distinction and you you kind of go in a little bit about language

[00:35:03] and how important the language that we use is and how we identify our feelings and our emotions

[00:35:09] for what they really are and what they really mean and I think that's a really important practice

[00:35:14] it reminded me of that book I talk about a lot emotional agility in just really identifying them

[00:35:20] letting them be what they are and not being necessarily controlled by them or even really

[00:35:26] completely guided right I think as a child I just thought oh you have an abortion you need to fix

[00:35:31] it that's that's something that you have to fix with an action and it's not true so like a lot

[00:35:37] of people listening their affected kiddo isn't the only one in the house and Joey has two brothers

[00:35:44] when older and when younger so that dynamic is really important right and it's a constant worry

[00:35:51] and it's also constant joy and it also has like this whole different existence in the household

[00:35:57] right and there's that guilt and shame in there too I know that but one of the things you said

[00:36:02] in your book that resonated with me and that with the boys was one of your sons Thomas who notices

[00:36:09] obvious strengths in his big brother seeing his six-year-old Joey through the eyes of a four-year-old

[00:36:14] is thrilling to me and it hits me that Thomas is the only person I know that expects the world to

[00:36:20] contain a person like Joey and I wonder when he'll see more of what Joey can't do

[00:36:25] I wonder how I can foster his delightful and innocent perspective within myself

[00:36:30] that is just one of the gifts of Thomas you know like he's such a gift and that's one of them

[00:36:38] yeah these siblings I love I love when you said that they don't know a world without people

[00:36:42] like them and it's so true and it is just something extra unique about the siblings right is

[00:36:48] that they grow up in this household so they see the good the bad and the ugly and they also

[00:36:54] carry it with them right but I think it's so much more normalized for the kids now more so

[00:36:59] because even the parents before you those kids didn't stay at home really ever and if they did

[00:37:06] it wasn't talked about they weren't in school it was invisible right where it was a totally

[00:37:10] different experience for your kids and all the ones after because they're it's a part of their life

[00:37:16] yeah well my kids now they see Joey sometimes not a lot I mean they don't even live in town so

[00:37:22] sometimes they sometimes they see them sometimes they a lot of times they don't but we always talk

[00:37:26] about about him you know I'm always like oh Joey and I did this Joey and I did that oh Joey

[00:37:31] remember that thing he used to do he like brought it up again or you know it's it's really interesting

[00:37:36] and my kids remember the funniest things like one of Joey's strengths is that he he just has this

[00:37:43] huge sense of humor and he will crack himself up and so he would he used to say or sign I mean he's

[00:37:49] he's pretty much nonverbal but he used to use word approximations or signs and he would come up with

[00:37:56] three noun series of things just to communicate and he'd just like keep doing it and try to get

[00:38:03] somebody else to do it and then when somebody else would do it he would just crack up.

[00:38:06] Joey reminded me a lot of Ford during those types of stories so similar yeah including like the

[00:38:13] self comedic like sense of humor yeah yeah crack themselves up and then just getting obsessive with

[00:38:18] things they really reminded me of each other so funny yeah I definitely like saw my life in

[00:38:25] those moments for share these kids are so similar and they just appreciate the simple things

[00:38:33] in such a fun way. Yeah it helps you know them you're like I see you I see how delighted and you

[00:38:39] know you are delightful you are delighted you know you're noticing the world around you you're seeing

[00:38:44] something that looks out of place and think it's hysterical. Just out of curiosity did either of the

[00:38:49] boys were they kind of led towards a compassionate type of career or anything like that? Not really

[00:38:56] except that I'll tell you to I mean it's just who they are like no not in a career definitely not

[00:39:01] they're sort of math science engineer guys but my older one I don't know if you've ever heard of

[00:39:06] this he's he was always he was doing stuff online when he was in high school and one of the things

[00:39:10] he would do is be a a peer counselor so there's like some website you can go to and just be a

[00:39:16] peer counselor and you can say if you want to listen or if you want to talk or you know if you

[00:39:20] want to be a sort of a helper or a listener and he used to do that a lot and just talk to people

[00:39:26] about what was bothering them and there's just people he didn't know and he wasn't going to know

[00:39:31] again it was just a you know it was just a room to try to help people through their problems or

[00:39:36] listen or whatever and he's he's really a deep emotionally deep soul that one is and then the

[00:39:43] younger one when he was in elementary school you know how they'll give kids their superpowers

[00:39:48] they'll like sort of notice the kid and say what a superpower was every time his was inclusion

[00:39:53] and they said every kid who walks into into the room they stop in the doorway they look at where

[00:40:00] the other kids in the room are then they go hang up the stuff in their cubby and they go

[00:40:04] sit with their friends they're like not this kid he rushes in puts the stuff down he plops

[00:40:10] down next to anyone like he never he never checks it out to see where people are he can hang

[00:40:16] with anyone and he always notices people who are on the fringe and brings them into the conversation

[00:40:23] and brings them into it like hey do you want to play this game with us or hey you know like he

[00:40:27] just was mr inclusivity as far as being a connector of people. That's beautiful and more important

[00:40:34] than any career I mean that is yeah that is a really special existence. Yeah so that's just

[00:40:40] kind of who they are as far as they are very emotionally aware of people. Yeah it's really beautiful

[00:40:47] to see I see even happening already like a young teeny child my daughter does the same thing

[00:40:53] it's just a really interesting thing to watch. Yeah actually can I tell you one thing I didn't put

[00:40:57] in the book that maybe I should have my oldest after Joey had left and I was still very very sad he said

[00:41:04] mom our family is a group project. Oh my gosh he said every group project I've been in I've been

[00:41:11] with people I love I've had amazing ideas he said every group project I've been in has gone

[00:41:16] differently than I thought it would it's gone differently than my idea. He said our families

[00:41:20] the group project and you have to let it Joey's move was better for him it was better for every

[00:41:25] single one of us and it's not what you wanted but it's better for everybody and you have to let

[00:41:31] me. I just wrote that down that is so profound and yeah for a young man to have deduced it

[00:41:37] to that and to understand it and to appreciate it for that is just really astounding. Well it is

[00:41:44] because then I can just see myself as this person you know grasping to my view you know my original

[00:41:51] view of what I wanted and basically throwing a tantrum like I didn't want totally totally oh my gosh

[00:41:57] I love that it really it really reduced to me to like wow what am I holding on to this is actually

[00:42:03] this is actually a past me that I'm holding on to not like the person I want to totally and also

[00:42:09] goes back to that heroes like martyrdom right. Yes absolutely 100% the martyrdom when we say we'll

[00:42:17] do anything for our child we think of all these feats of strength and sacrifice within the

[00:42:22] within the typical family structure you know that's what we mean we don't mean we'll do anything

[00:42:27] we don't mean we don't mean we'll give them up you know we don't mean we'll let them live outside

[00:42:30] of our home we mean we'll do all these other things to keep them in our home. And what's really

[00:42:34] beautiful about that too and I you also mentioned this and we talk about this a lot now even just like

[00:42:39] you know regular parenting but it's definitely different of modeling right and that yeah that moment

[00:42:47] when your son says that to you that should be like such a fulfilling thing because everything

[00:42:52] that you had modeled up until that point created this person who could who could do that right and

[00:42:59] yeah who could do that for me and who I would listen to right like he wasn't somebody on the

[00:43:03] street that I was like forget you I don't care what you say. And that's another reason of asking

[00:43:07] for help right like we have to break these family systems we have to model to our kids how important

[00:43:12] it is to encircle community and to ask for help when you need it because it's for the group project

[00:43:18] right and it's to it's to enrich the lives of everyone that you care about and when you aren't

[00:43:24] modeling that it's okay to ask for help this cycle just continues and it goes through the families

[00:43:28] like every single time. Right. Okay there is also a couple fun stories where you finally I don't know

[00:43:36] if you decided or if you finally just came upon them but you're extreme parenting sister friends

[00:43:42] that you found oh yeah and I love so I love a few things that you said about them you know you

[00:43:48] obviously everyone could connect with this who's found a rare mom of dad friend we cheer each other

[00:43:53] on when one has a victory especially one most folks would not appreciate when we gasp at behaviors

[00:44:00] it is at those of unhelpful people not the behaviors of our kids yes and we have each others backs.

[00:44:06] So tell me about finding kind of that community and what it changed for you. Yeah well I mean

[00:44:11] I tried a few things I tried autism support groups they did not didn't weren't you know a fit

[00:44:16] because of the severe intellectual disability my son has it just but had nothing you know there's

[00:44:21] just like no similarities at all I was told for a long time he was probably going to catch up so

[00:44:25] I wasn't in a in an intellectual disability group either right because they weren't saying like

[00:44:31] if I had known he had synced up at that point I would have found my people faster so I didn't find

[00:44:37] people for a long time I sort of stumbled into a group I had a friend who's this it's typically

[00:44:43] like who did I know I knew the people on my block I knew the people in my kids schools and so one mom

[00:44:50] who was the friend of my older son she had an even older son who is on the autism spectrum and

[00:44:56] she invited me to a special needs group mom's group and I was like well my son has nothing

[00:45:02] to do with her son but why don't I try like I was just sort of like it's been you know four or five

[00:45:06] years since I've tried this why don't I just try I went and that woman ended up kind of dropping

[00:45:13] out pretty fast but there was one woman there who had a son two years older than my my Joey

[00:45:18] who seemed really similar and then there were a bunch of other people who had

[00:45:24] kids who were Joey was by far the youngest at this point who had older kids mostly autism some

[00:45:31] Down syndrome some other some CP you know some other things and so most of them had a very very

[00:45:38] different child but since they were older they were starting to have problems that were

[00:45:44] more severe the problems were getting bigger because the kid was getting older and they were just

[00:45:49] more complex right just more complex problems out in the world and so I stayed and it wasn't for

[00:45:54] it was like a good couple years before I felt really really connected to them but I'm really

[00:46:00] I'm really grateful that I stayed and it's it's one of those things you're it's sort of like going

[00:46:03] to there like for me I've gone to therapy a couple times I went because I knew I had to go like

[00:46:08] you know this is important but I don't I can't say that I ever felt a lot better and so it wasn't

[00:46:13] till I started my parent coach training they're like remember this isn't therapy and I was like well

[00:46:18] what is therapy and they're like well therapy is about healing past wounds I was like oh my gosh

[00:46:23] I wish I'd known that like we could have tried that in therapy but that had never come up really

[00:46:28] I don't know I felt like it was just check-ins yeah it totally was especially when most of the time

[00:46:32] the therapist just like really doesn't know how to meet you where you are in this situation yeah

[00:46:37] and that's just the way that it is it's not because they're terrible people right so that so that

[00:46:43] never really helped me but what did help me was the coaching I I honestly like in a sleep

[00:46:48] deprived state signed up for something online that I had no idea what I was doing and then it turned

[00:46:52] out that it cost something it really costs like $25 but I was like what I didn't think I pushed a

[00:46:56] button that and I was like to I was honest to God to embarrass to not pay the $35 and so then

[00:47:01] I went and that's how I I think I don't know if this is still the title but at one at one point

[00:47:05] the title of my little vignette was like a sleep deprived mom walks into a coach it was like literally

[00:47:10] like that it was like yeah and that's it it was like what did I do I didn't mean to do this oh my gosh

[00:47:16] I love it I could talk to you forever about your book but I want people to read your book I want

[00:47:20] everyone to buy this book I don't even want you to like you have to this is one of our books okay

[00:47:25] this is one of our books this will feel your heart and you will feel so seen and I promise with

[00:47:34] the lists I was talking about and then the coaching that JR goes into and the service that she

[00:47:39] provides is such a resource that I don't think has been handed out in quite the way that it has

[00:47:48] been with JR's book that I think it's going to be transformational and if anything what you need

[00:47:54] sometimes is someone who gets it and reading this book will do that for you and that can change

[00:48:01] the trajectory for a lot of people I know that for a fact I hear about it all the time you can

[00:48:06] definitely buy the book on Amazon you can go to your local bookstore and ask them to carry the book

[00:48:11] you can order it through them JR what are other ways people can get this book and what do you want

[00:48:16] them to know yeah so the easiest way right now is on Amazon either in Kindle or paperback and it's

[00:48:22] paperback print on demand I also have a PDF on my website so you can just go there and buy it

[00:48:27] it's jadeyread.com and pretty soon I'll have it on Lulu where you can Lulu.com is a place you can

[00:48:36] buy it and it's sort of to more it goes to more countries there so like Australia apparently

[00:48:40] doesn't do paperback on print on demand so yeah that's it and then I will be getting it out to

[00:48:47] Ingram Spark so that it can go to bookstores and okay I lied you can get it from your book story

[00:48:51] yet yeah it's gonna be very soon that's on my that's on my April list how about an audio book for

[00:48:57] those of us stuck in the car yeah yeah I am working on that I'm like stepping through episodes so

[00:49:04] I really want to read it myself I think having it in my voice is important even though

[00:49:09] like almost every other person on the planet I don't like the sound of my recorded voice but

[00:49:13] I do think that's important for it to be in my voice and so yeah that'll be later this year

[00:49:18] awesome I can't wait well thanks so much for your contribution and thank you for sharing all

[00:49:23] of the wisdom and I'm so impressed and grateful to have you in this world with me and

[00:49:31] same Effie same what you do is just too amazing it's so needed and so helpful and I really really

[00:49:39] really feel like hindrance bear it with you so thank you me too go check it out it's called more

[00:49:44] of everything I'll have links here in our episode and check it out on amazon and download it as soon

[00:49:51] as possible and please send me a message send JR message and I'd love to even see the stories

[00:49:58] in a snapshot on Instagram when you're finished with each vignette that really spoke to you

[00:50:02] please post it and tag us in there all right JR thanks I will see you sooner than later great

[00:50:08] thanks Effie I hope you've been enjoying this podcast if you like what you hear please share

[00:50:13] this show with your people and please make sure to rate and review it on iTunes or wherever you

[00:50:18] get your podcasts you can also head over to instagram facebook and twitter to connect with me and stay

[00:50:24] updated on the show if you're interested in sharing your story or if you have anything you would like

[00:50:30] to contribute please submit it to my website at feparks.com thank you so much for listening to the show

[00:50:37] and for supporting me along the way I appreciate y'all so much I don't know what kind of day you're

[00:50:42] having but if you need a little pick me up for it's got you

[00:50:58] hmm