67 – More of Everything: One mom’s journey parenting her son with SYNGAP1-related Intellectual Disability

Find JR’s book on Amazon

JanieReade.com

These are our introductory comments: 

Our presentation today discusses One Mom’s Journey parenting her son with Syngap1-related Intellectual Disability through the author’s book ‘More of Everything’.

I have the pleasure to introduce today’s speaker and author Janie Reade.  She is Mom to three adult sons, one who has a rare neurodevelopmental disorder.  JR, as she likes to be called, has a Phd in Human Genetics, but devoted her parenting years to her family, including her nonverbal and self-injurious son, 21 year old Joey, who was diagnosed with Syngap1 at the age of 16.

As a developmental biologist for most of her career, she spent her time observing and analyzing data from as many perspectives as possible.  She couldn’t help but bring those habits to parenting all her children.

As a volunteer with Syngap Research Fund, JR helps other Syngap families understand their genetic reports.  Through meetings with academic and industry scientists she helps the SRF leadership team determine the best way to accelerate the research and development of treatments for Syngap1 disorders.

‘More of Everything’ is JR’s short memoir of accepting her son and herself.  It is available on Amazon in both eBook and paperback formats.  In addition, More of Everything is being translated into Spanish, and an audiobook will be forthcoming later this year.

JR has retired from her career as a basic scientist and is now a Parent Coach.  JR helps parents who are working hard to parent their children and want to feel more connected, even in the face of developmental obstacles.  JR lives in Seattle.  Her languages are English and Joey Sign Language!

THIS IS A TRANSCRIPT ONLY:

0:06hello everyone and welcome to today’s webinar my name is Olga Bode and I’m a singap parent and part of the team here

0:12at Sun Gap research search fund our presentation today uh discusses one

0:17mom’s Journey parenting her son with sin get one related intellectual disability

0:22uh through the author’s book more of everything and I have the pleasure to introduce today’s speaker and author

0:29Janie Reed she is Mom to three adult sons one who has a rare neurodevelopmental disorder

0:35and they are she likes to be called uh has a PHD in human genetics and devoted

0:42her parenting years to family including her non-verbal and self-injurious some 21 year old Joey who was diagnosed with

0:50sin get one at the age of 16. as a developmental biologist for most of

0:55her career she spent her time observing and analyzing data from as many perspectives as possible and she

1:01couldn’t help but bring those habits to Parenting all her children excuse me as a volunteer with some

1:09research fund Jr helps other syngap families understand their genetic reports uh through meetings with

1:15academic and Industry scientists she helps CSR srf leadership team determine

1:20the best way to accelerate the research and development of treatments for syngap-1 disorders

1:26more of everything is Jr’s short Memoir of accepting her son and herself it is available on Amazon in both ebook and

1:33paperback formats in addition more of everything is being translated into Spanish and an audiobook

1:39will be forthcoming later this year Jr has retired from her career as a basic scientist and is now a parent

1:46coach she helps parents who are working hard to parent their children and want to feel more connected even in the face of

1:53Developmental obstacles Jr lives in Seattle and her languages are English

1:58and Joey’s Sign Language a recorded version of this webinar will

2:03be available on the srf website under webinars on the family menu and by the

2:09end of this presentation you will have the opportunity to get your questions answered and we’d love to

2:15hear from you so please write your question in the Q a below and for those of you just joining us

2:21welcome and again our speaker is Jenny Reed it’s now my pleasure to turn things over to Jr thank you Jr

2:29thank you Olga for inviting me to do this live webinar

2:36to the audience um thanks for being interested in my experience

2:42so some of you have talked to me on the phone about your genetic report or read

2:48one of the blogs I helped write there is another side of me that’s different than my science role

2:54and that’s the person speaking to you now

3:02so and here’s Joey’s mom this is the part of me that longed to be a mother before I was 32 and then

3:09strived to be a great mother from age 32 for about two decades and now at 55 is

3:15content with being a connected mother so to introduce you to that part of me

3:22and to Joey as a pair that grow together I’m gonna read from my book

3:28this anecdote is when Joey’s eight years old and I’m 42. and it’s titled building a relationship

3:36in extreme circumstances I wake up to see 206 am on our digital

3:44clock and hear Joey bumping around in his bedroom

3:51he’s eight years old and often can’t sleep through the night he hasn’t yet wiggled his doorknob which

3:57I outfitted with a jingle bell bracelet so I can hear when he leaves his room my feet find my jeans on the hardwood

4:03floor and I pull them on under my nightgown I push my arms and head through a quarters of fleece and my gray brown

4:10hair goes up in a ponytail I make it into Joey’s room and close the

4:16door behind me I feel Victorious that I’m so far unnoticed by my husband or other two

4:22kids all sleeping I sit next to Joey’s bed and with a soft slow descending tone I say

4:29lay down what would be rice with negative connotation to another person is just

4:36what Joey needs to hear in order to process language we bought a low simple bed frame when

4:43Joey started climbing and jumping on his bed we replaced his hanging ceiling light once he could make it swing by batting

4:50it with a pool noodle as it nears 3 A.M Joey stands in front of his closed door and Knocks

4:58I know this is the most polite way he can declare his intent so I give up on getting him back to

5:04sleep time for us to go downstairs

5:10the bulk of our unfinished basement is a playroom with five Escape Routes

5:15doors connect to the garage the backyard the laundry room the furnace room

5:21and the staircase leading back upstairs plastic shelving divides the far end into a gaming retreat

5:28in the main area between the return pipes below the ceiling sits a custom steel frame where we can hang swings a

5:36rope ladder or a punching bag I have a creative old DHS tapes for my nieces and a low cabinet housing a TV

5:43and VCR Joey looks content while he sits and

5:48rocks on the rope ladder he’s chewing on a stuffed turtle and watching Kipper the Dog animated episodes that I set up for

5:54him with pillows and a down comforter I settle in on the floor I’m stationed so that I’ll be bumped

6:01awake when he heads to the kitchen the voice of the British narrator loves me to sleep around 4am

6:07in my light draws I feel or hear the drop in atmospheric pressure

6:13cold air knocks my face awake the first thing I see is the open door to outside and I realize Joey is gone

6:21holy he can reach the walk I jammed my feet into my tennis shoes

6:26laces laid out and bolt into the backyard already bright with

6:33the motion activated floodlights I paused and slowly turn my head to

6:38listen for him I can’t hear anything over the chirping birds where are you

6:45I don’t yell because he won’t answer or come I Lurch up the driveway lit by a bright

6:50street light Joey isn’t under our dim porch light kicked with cobwebs

6:56he walks to things he likes on the sidewalk I look right the direction for

7:01muffins but see no one I go left 10 big steps and there next to

7:06the neighbor’s porch swing thank you God stands Barefoot Joey

7:12I sit him down and feel that his hands are warm his feet are cold but not icy I

7:18step out of my shoes and put them on his feet and cinch up the laces I take time to pick our steps back me

7:25Barefoot and trying to keep Joey’s little feet from stepping out of my giant shoes

7:30on our driveway I smell the sweet vanilla plants that hedge our yard

7:36inside the closed door I wrap them in my comforter and face him

7:43Joey wants to go outside mama says

7:50no I say while pointing and signing he watches the door doesn’t look at his

7:58feet in my big shoes or me Joey wants to I prompt

8:05go he says mama says

8:11I wait for him no we say together

8:18arms straight at the sides he tips toward me on his toes he lowers his chin

8:23to lean his forehead on me he lets me play with his thick messy hair I’m relieved that I found him relieved

8:30that he’s compliant and cuddly not defiant and aggressive I wipe off our feet and take him

8:36upstairs to a warm bath

8:43I’m still upset with myself that he was able to get outside The Echoes of my fear pulls through my

8:49head as if I’d been calling his name Joey’s warm and dry at 4 35 A.M

8:56one hour until our coffee shop opens two hours until the others wake up

9:02four hours until Joey’s school bus comes

9:12looking back it was easy to lean into Joey’s hugs and to help him choose different types of

9:18swings it was hard to have so little sleep it was easy to love and appreciate his

9:25sense of humor it was hard to see him do repetitive movements that others describe as aimless

9:31it was easy to learn from our favorite therapists and feel like I had Community for a few hours a week

9:36it was hard not to have friends who understood what we were really going through it was easy to be proud of all my kids

9:44it was hard to know how much time to spend with each of them

9:49Joey didn’t sleep much but I always tried to protect the sleep of his brothers and his dad and hoped that they could thrive

9:55I nap during the day when I Could lack of sleep at night eventually prevented me from holding a part-time job even

10:01while the kids were all in school for me a chronic lack of sleep resulted in reduced cognitive abilities weight

10:08gain and bouts of depression and anxiety

10:15my takeaways I have four here but I’m only going to read uh takeaway number three

10:22I felt like a martyr when Joey was young it felt good for a short time a real

10:29Badge of loyalty and hard work but it’s unsustainable

10:34and isolating so to the caregivers out there I want

10:40you to consider this do people say to you OMG I don’t know how you do it

10:47or you’re amazing and exactly the right person to care for a sweet little one

10:53or I could never do it but you’ve got this people trying to support us are often

11:00bewildered nervous to say the wrong thing and so common tropes get reinforced they

11:08sound nice but they don’t end up leaving me feel supported

11:15in a session with angelaid which is a really great organization I was part of

11:20a discussion about this I came to realize from the great professionals there and the wide range of rare moms

11:27participating that this language separates us from our tribe

11:32it puts all the responsibility on me me alone and others get to feel good for

11:37their supportive words without actually helping feeling separate different special it

11:45fed into the idea of being a martyr on my own sacrificing my own hobbies and friendships then my job and my health

11:51and finally my safety and self-worth to not only parent connect with my son but to try to cure him

12:00the over Praise of me said that I didn’t need help what we actually need is sleep

12:07we need friendship we need honest conversations without judgment

12:12we need to feel similar to others not separate it can be hard to find supporters and

12:19contributing to how hard this is you know we’re part of rare disease right there’s not that many people

12:26um and we’re at different stages we’re all at different stages and there’s variation in how we experience

12:34our disease and there’s variation in our family structures and our family values so

12:42finding people who support you is it doesn’t sometimes it can happen by

12:47accident but for me it didn’t really happen by accident it was something that I had to

12:52try at and I had to let go people who sounded supportive but weren’t you know

12:59weren’t helping even when I asked for real help and I had to find people who

13:05who could have those honest conversations without judgment for me that’s what it was that’s what I needed

13:10not saying that’s what you need I’m just saying that’s what I needed

13:15so my experience is parenting Joey have

13:22changed some of my thought processes and I like thinking I like knowing what

13:28I’m thinking and the changes in my thinking have been pretty dramatic and

13:33pretty surprising to me so I’m going to tell you about four significant changes to how I think about

13:39my role in Joey’s life or what what’s going on um these are specific to my own

13:45understanding of our rare disease our our stages

13:50um Joey’s unique expression of his personality and the disease

13:56so I don’t I don’t expect any of you to have these same ones but I think it’s been really interesting to me to find

14:02these and and I just want to share with you

14:11um so Joey had sleep studies when he was quite

14:18Young and he had he was diagnosed with obstructive sleep apnea so he had his

14:23tonsils and adenoids removed so I’d say my thinking before the sleep studies in surgery when he could barely

14:30sleep he would basically only fall asleep in my arms he’d wake up when I moved him my thinking was I must get Joey more

14:37sleep my thinking after the sleep studies after the surgery after the CPAP after

14:42all this stuff didn’t help it became keep Joey safe while I sleep

14:50that’s a big change right keep Joey safe while I sleep

14:55my thinking before his self-injurious behavior started

15:01um he you know when he was little he would kind of pretend like kind of pretend to bite the

15:06back of his hand and it was you know you could tell he was upset and I was like oh yeah whatever you know go for it

15:12kiddo you’re not hurting anything um and I would try to get him to not do it but I couldn’t I I just didn’t

15:18understand it um but then as he got older you know he could actually tear into his skin and

15:24and bleed and get infected and all this terrible stuff so my thinking before his

15:29self-injurious behaviors were were real was I must enrich Joey’s life

15:35I really wanted him to have the best life possible and I was looking at him from this lens of not being able to do

15:42things and I wanted to enrich it so my thinking after his behaviors got

15:48really frightening for me and I’m sure for him they were keep keep Joey safe and

15:54engaged with neutral emotions um this was important because in

16:00enriching Joey’s life I was often trying to get him to have these like higher happy emotions and I realized after a

16:07while that those were like dangerously close to Terror and so keeping him more

16:13in a neutral emotion state was better for him and better for everyone

16:21um my thinking before learning about to get biology I mean in the introduction August told you we he wasn’t diagnosed

16:28until he was 16. so I had 16 years almost 17 years without understanding biology very well

16:35um so my thinking before that I must help Joey develop you know

16:40uh that’s it that’s you can’t um it can’t say that anymore clearly I must

16:46help Joey develop that was really my my point of view my thinking after learning about singap

16:52biology treatments treatments may help Joey develop that’s that’s what we’re

17:00that’s what we’re trying to get that’s what we’re working toward that’s what we’re raising money for that’s what we’re in meetings about

17:07um treatments may help Joey develop

17:13my thinking before I ran myself into the ground kind of physically and somewhat emotionally and definitely

17:19mentally I can and must do more I’ve always been kind of that that

17:25one-trick pony that like oh something’s hard okay we better do more right that’s

17:30that’s how I that’s how I solve problems just work harder just do more my thinking after I felt somewhat

17:37disabled myself this is this is relative this is like relative to how competent I

17:43felt before um so my thinking after I felt run into the

17:48ground was my relationship with Joey is my priority

17:56my I just want to kind of summarize these my frame of mind and my kind of before

18:03times is a large dose of responsibility plus a

18:09helplessness but it’s not really working and so my intentional framework that I

18:15use now in my sort of enlightened I’m going to just call it my enlightened times

18:20is this and I don’t expect this to be yours but it is for me what is my unique role and for me it’s our relationship

18:28that’s it so this point of view grew over a lot of

18:33years I didn’t just wake up one day and realize this it took me kind of a long time to come to the idea

18:39and one of the points was when he was six and I just want to read you a

18:46little bit of this vignette called how are we the same

18:52so the questions we ask H6 how are we the same after Joey’s sixth birthday I’m

18:58devastated inside he’s still not talking there’s been no meaningful progress for years

19:04part of me has already let go of the hope that his stagnant 18 month old abilities will start catching up with

19:09those of his peers which feels disloyal of me begrudgingly I let go of the rest

19:15now that I’m released from that unhelpful holding pattern I’m free to paint myself a bleak picture of his

19:20future I create a mental list of things Joey will never do himself based on my own

19:26daily actions he won’t change lanes on the freeway

19:31he won’t make doctor appointments he won’t plan a party

19:37he won’t care for others every thought makes me sad and I’m

19:43ashamed for dwelling on them I stay in my grief for a while I don’t

19:49share these thoughts with others as I’m embarrassed to be grieving something that’s been obvious for so long

19:55I finally get fed up with my sorry self endlessly listing numerous ways for different and ask a better question

20:02how are we the same I don’t even have a realistic guess

20:10but a reason that there must be some non-trivial ways for similar so I think about how I can find them

20:20I consider what activities Joey likes and wonder why I know he loves going to the gymnastics

20:25center every week with his classroom they say he especially likes the balance beam

20:31so I start looking for things for him to walk on when we’re together a log a curb a painted line on the pavement

20:38I lead them to each mock balance beam tap it with my shoe and say up

20:43he holds my hand and walks on the narrow linear path to my surprise he participates in this

20:50activity at every opportunity by watching him I realized that his level of Engagement is interested but

20:57not intense and his level of competence is okay but not perfect

21:03he’s having fun with a small challenge I think about my own activities and how

21:09I like throwing a neighborhood Tea Party something creative and beautiful that isn’t daunting

21:14I remember how struggling to learn to play bridge was grueling and how I’m glad I stopped

21:20I realized we both appreciate frequent opportunities for appropriate challenges there are simple ways to feel happiness

21:26right now not ways to improve I think about when Joey looks the most

21:33relaxed and at peace I see it whenever we’re outside in the woods he walks among the quiet immobile

21:40trees shaded from Bright Sun or sits in a soft dirt and fallen leaves

21:45he’s satisfied and engaged when he’s in a pool bouncy and grinning he pushes the water splashing

21:52like everyone else he relishes sensory Joy his neurological differences make some

21:57common environments uncomfortable for him Joey Squints under the bright overhead lights in a school gym but he can’t

22:04indicate his pain or irritation and so he throws a tantrum he insists on turning a ball cap so that

22:09the brim doesn’t shade his eyes once I Supply his teacher with a bucket hat for him to wear during indoor PE

22:17Joey’s aggressive and self-injurious behaviors in the gym vanish he can enjoy his favorite subject at

22:24school watching and Joey watching Joey enjoy his time in the forest or a pool has

22:31prompted me to spend more time doing things I enjoy that aren’t necessarily productive like arranging Fabrics or Yarns for my

22:38stash just to see how the colors and textures look together knowing about Joey’s sensitivities makes

22:44me more accepting of my own I’m more prepared with hats and sunglasses

22:49more willing to reduce my time and environments that feel harsh to me even when others expect me to join in their

22:55fun for a good life we both need our senses to feel good at least some of the time

23:00and to limit feeling poorly we need sensory Joy

23:06we both love to be adored in addition to his immediate and large extended family Joey interacts with many

23:13different caregivers teachers and therapists who Delight in him he accepts hugs and he

23:19connects with people who share his sense of humor and his enjoyment of song mashups I’ve always felt driven to develop and

23:26maintain close personal relationships and I love being understood and appreciated that we share this need is at least

23:32surprising to me but I need help to figure out how to best Foster a close relationship with Joey where we can both

23:39enjoy each other and feel adored more of the time

23:44I’m relieved to have identified meaningful ways for similar it helps explain our best times together

23:50I use the information to guide our daily interactions and strive to include all three appropriate challenges sensory joy

23:57and authentic adoration looking back

24:05knowing how to simultaneously accept and work on Joey’s development evolve is I learned more about Joey myself and the

24:12world I’ve worked with him on communication cognitive tests emotional regulation

24:17daily routines physical development fine motor development sensory play and so

24:22much more the shift to working on our relationship does not mean I don’t care about helping

24:28his development it just means that I’ve relaxed my constant search for improvements

24:33I still notice and celebrate these when they happen I just don’t feel defeated every moment that they don’t happen

24:39which is most of the time by concentrating on how we’re similar I

24:44find it more fun to plan our time together and I find it less exhausting to spend time together

24:49I try to make sure we both have appropriate challenges sensory Joy

24:55and authentic adoration

25:00so yeah I put the slide here just to I I kind of said this in the looking back section but I just wanted

25:06really hit it home I still want Joey to develop it would be a misnomer to think I don’t I didn’t I didn’t just say oh

25:14yeah I just want to have a nice time with him I dearly want Joey to develop

25:19but I focused on our connection because it’s how I have success and how Joey

25:25feels honored

25:31my takeaways I’m just going to read a few of them um thinking about what Joey loves and why

25:38he loves it proves to be a good use of my time

25:45shifting my focus from how I can help him to how we can have a

25:51good time together might sound indulgent but I think it’s actually great parenting

25:59and when we’re aligned and happy having a positive experience together Joey

26:04feels it saying you’re so great and I’m proud of you doesn’t communicate that to him

26:12especially if I’m tired sad frustrated or scared

26:25so I’m going to just talk a little bit about some of what I’ve learned um this

26:31is what it took to be a better parent with a focus on Joey so

26:38this first line here took lots of learning from doctors from everybody right therapists teachers behaviorists

26:45even some really great babysitters this is I think where we all are together we’re all just trying to learn

26:51what the heck to do this is where I think srf and other communities come in this is why we have each other the the

26:59larger rare disease community [Music] um this this I think is is really common

27:06for everybody and so the other things I’m going to say I think are maybe less common maybe not

27:12who knows we’ll see so it’s also taken me lots of observations of Joey and lots of faith

27:19in my understanding of him and I think that I personally have a lot of

27:27certainty around this and I I just wanted to describe it to you because it’s probably not a it’s probably not a

27:32common um a common thing so I have a favorite quote from a

27:38developmental biologist which I have a feeling maybe other people may not um there’s actually only two famous

27:44quotes from development biologists so so choosing one is your favorite may not

27:50seem that exciting but this is it for me I’m gonna read it to you and then I’m

27:55going to translate it into how it how I use it as a as a parent so as a scientist

28:02our real teacher has been and still is the embryo who is who is incidentally

28:07the only teacher who is always right this is Victor hamburger who was born in 1900 and died in 2001.

28:14uh dear Joey was born he what he’s talking about is watching a

28:21fertilized egg become an embryo let’s let’s say we’re just looking at vertebrate embryos offvertebrate embryos

28:28have a similar similar stage they have a it’s a it’s a

28:34different times because different animals develop differently but but they’ll have they’re recognizable they have a face you know vertebrates have a

28:39face they’ve got eyes their nose and mouth their mouth goes to their gut tube their their brain has a

28:46four braid a midbrain High brain they have a spine a spinal cord and a

28:54uh they have appendages you know forelands and back limbs and got skin on the outside they’ve got muscles on and

29:00Bones on the inside so so watching a fertilized egg become that

29:06is just amazing and the what he’s saying is that in order to

29:11understand that you have to watch you have to watch it that’s that’s where you’re going to learn so as a parent

29:19as a parent the way I read that is my real teacher is Joey

29:25who’s always right you know whatever whatever’s happening for him that’s what’s happening and

29:34I can go to experts I can go to doctors I can go to therapists I can learn

29:41but I learned from the people who are watching Joey not from the people who are like looking in a book

29:50there’s a follow-up thought from this and this one is really important

29:56from Joey’s perspective his behaviors make sense my job is to try to understand him

30:03so I I have a real faith in this I have a real faith that from his perspective his behaviors make sense and

30:11they not only help me try to understand him but get sort of give me insight into what is going on inside of him

30:20okay so us Joey’s mom I’ve spent his entire life reading his you know watching him reading his intent

30:28um I’m pretty good at reading his intent I mean maybe not not compared to him knowing his intent

30:34but compared to other people knowing his intent I’m really really good at it um what’s even harder is trying to

30:40understand his response like when I tell him things like there’s often no it just looks like nothing happened

30:46but that’s not always true and so understanding what it is he understands has been harder for me than

30:52understanding what it is he’s trying to get across

30:57so now I want to tell you what it took

31:03to be a better parent with a focus on me this is what you’re going to find a lot of in in the book

31:09so I had to find lots of ways to rece receive support from others even when

31:15even when what I wanted most wasn’t happening which was Joey developing I had to find so many points of

31:22acceptance and these are not just accepting Joey but accepting you know my own limitations accepting the world

31:28accepting so many so many things um I had to examine my emotions figure

31:35out what your pure emotions and which are sort of created by Me by my thoughts and I needed some time to reflect rest

31:43laugh connect with others ultimately connect with myself

31:48so you’ll find a lot of that in the book that’s that’s a lot of what it’s about

31:55um and then what it took to be a better parent with a focus on us not just on Joey not just on him but us together

32:02it took lots of Trials to see how we can connect with each other and I think that the problem here is

32:08disappointment right like we all we we God we try we try and then it doesn’t work and it’s so disappointing and so

32:16trying to get over that disappointment and just say just just you know focusing on the

32:22things that do work that’s that’s I think what we have that’s the part that’s hard to overcome it’s not hard to

32:28try it’s hard to get over the disappointment of all the ones that don’t work [Music] um

32:34it took observations to see what we both enjoy when we’re both fulfilled and the

32:40difference here is like usually you’re just trying to see what Joey enjoys see when Joey’s fulfilled right like it’s it

32:45takes a real it takes a real shift in thinking to to add myself into the equation

32:52that was that’s not necessarily I mean I could tell when I’m bored but I I don’t really necessarily notice when we’re

32:59when we’re both having a good time and practice having a good time you know actually practice having a good time

33:04with him is um was important too and then this last one practice at using

33:09humor using pauses using gratitude I really learned a lot of this from floor

33:15time OT there’s lots of ways you could learn this probably some people are not as as uh

33:20inherently serious as I am so maybe maybe people are better at this than I was but floor time OT is what really

33:26gave me uh an understanding of not only how to do this but why it was important and showed

33:33me showed me how great it was as far as connection goes so

33:40oh I think something where it’s going to happen here I think it’s gonna Something’s Gonna jump in yeah there we

33:45go so my book is more of everything how I became a better parent to my child with extreme special needs by lifting my

33:51emotional burdens and the question is do you want this book

33:57um I think if you have an older child with a neurodevelopmental disorder I think the answer is absolutely yes the

34:02people I’ve that have read it that with in that in that stage it’s a definite yes I

34:07think if you have a younger child or a recently diagnosed this it might not might not be helpful yet

34:13um you know when I was writing this book I had two thoughts in mind one was from a

34:19writing teacher who said the easiest thing for a reader to do is to stop reading so

34:24if you’re reading a log and you don’t like something just stop reading that’s that’s tip number one and then the

34:30second thing that I kept in my mind was I really tried to keep this in my voice I tried to keep this

34:35as honest as what I wrote down as like honestly me as possible so that’s that’s

34:42what you’re gonna get you’re gonna get my you’re going to get some of me there on the page it’s currently available on Amazon as an

34:49e-book and a print-on-demand paperback so it takes a little while to get the paper back because they print them once

34:54you order them and the problem here is that it doesn’t go to Australia so pretty soon I’ll have it back on

35:01lulu.com you can do print on demand on Lulu that’s going to go to Australia the only countries not served will be the

35:07ones currently at War and um like Olga said a Spanish translation is

35:13in the works and an audiobook is planned for this year

35:20um reviews really help me and they help more people find the book so I heard people saying they weren’t sure how to

35:25do it if you’re on the if you’re on Amazon here you can buy the Kindle or paperback if you if you click on that 41 ratings

35:32thing you get to a new page over here and down here it says write a customer review all you have to do is click on

35:37that and click on this um and then in the Amazon so you have to have an

35:43account on Amazon so and you have to have spent fifty dollars in the last year so you can still do it if you’re if you

35:50have a verified purchase or not um so like this person had a verified purchase this person didn’t you can say

35:56your name you can just say customer um and even if you don’t want to do any of that you can just click helpful if

36:01you if you find some of the reviews helpful click there that’s a nice thing to do

36:07and so I just want to leave you with one uh one little bit of Joey

36:13this is Joey he’s 21 he’s walking into his apartment to go home and this is how he just dismisses me if you can read

36:20here what he what he does that I’m just going to let you hear what I hear

36:25I ooh bye bye

36:37super cool Jr super cool thank you so much for doing

36:42this we are joined today by my neurotypical son John say hi you’re on a webinar

36:48um I just I I wanna um

36:55first I wanted to celebrate that we pulled this off when we have this webinar I think um

37:01I think this is going to become something that we all refer other parents back to and

37:07I’m going to politely disagree with you I think they should I think parents of any age should read this because somebody with a nine-year-old singapion

37:14your wisdom and your your Insight can really help me think

37:20better about um how I spend the precious time I have with Tony right now

37:26but um I don’t want to say more than that other than deep thanks and great respect for for what you’ve done and

37:33what you’ve shared and I want to encourage um the other parents on this and anyone

37:39in the audience frankly if you want to um put your questions in the chat or if

37:44you want to speak you can raise your hand I’m sure people have responses or if you

37:50just want to admire Jr for what she’s done any comments

37:58or people just all well people are thinking about it Jr I

38:04want to ask you what was the um what’s been the biggest surprise since

38:09you put this book out

38:14um you know I think as I was writing it it was really hard obviously I had to take

38:20a lot of breaks and rethink things a lot and uh you know the vignettes I read

38:25were kind of sweet but there were there’s definitely harder ones in there to to read and uh

38:30so I was really just thinking about trying to remember and be as honest as I could about my thought process and so

38:37that was very internal what’s been amazing since it’s been out is

38:42how people have I’ve heard from so many people and they have all said to me something that I did not

38:49knowingly put in the book and so I love that it just it it meets anyone where they are right

38:57like I think this always happens when you read something you bring yourself to what was on the page right and you have your own thoughts about it but that’s

39:03what that’s what has been stunning to me is that people weren’t kind of

39:08scouring it for me that they were scouring it for themselves and that I

39:14have to say has been just really really um gratifying and

39:21uh amazing to me it’s made me feel really good and it’s and it’s helped me know other people right by them talking

39:27to me through this through this sort of conversation starter yeah so there’s a few apparently the

39:34chat is disabled and I have no idea how that happened but um you could there is a q a on the bottom folks you can you

39:39can put comments and questions in there so I’m just going to read a few comments um one person said this is great we

39:45truly appreciate it um another mom said I don’t have a question but read your book after the conference and appreciate your honesty

39:51and everything you shared I can relate to so much of what you said since my son is almost 17. it’s very very kind

39:58comment um reading it I could hear your voice this is such a perfect message for us

40:03parents I agree with Mike at any age really you can always let it simmer and come back to the message later and then

40:08we actually did have one question any advice for getting friends and family to read the book

40:16um that’s a good question um well you could buy it for him that often doesn’t work uh you could just

40:24like read a little bit to them honestly you can just take an excerpt into an

40:29email and say hey I just read this what um can you can you help me with it I

40:34assume that that’s to figure out how to get more support right

40:41um I’m just I’m just gonna assume that because we don’t

40:46I think it’s really common for us to hear people say these really

40:52kind of common tropes about how great we are and that that isn’t necessarily helping

40:57um I mean it feels nice it’s fine it’s not it’s not bad it’s better than people yelling at us or like calling the cops

41:04on us you know like there’s there’s lots of bad things that can happen so it’s not bad but it’s also not connecting

41:11uh yes uh yes is there a good way to buy a bulk order other than Amazon yes as

41:17soon as it’s on Lulu that’ll be easy so lulu.com will be the way to do bulk orders

41:22and you can um go through me depending on how big a bulk it is you know if it’s over a few then I can do the order for

41:28you yeah um

41:33lulu.com I I don’t have it on there yet but I will yeah we’ll we’ll push it out

41:39to the community for sure um Marta you wanted to talk if you want to come off mute go ahead

41:45no I I just want to say that the the chat wasn’t working but one one thing

41:51Could Happen come on with Jr and I appreciate that they are put it in very nice words

41:56give this book to the community because it’s very helpful to note that is things

42:03get better to relationship with your kid in proof I have a 20 year old and I have a similar experience you know uh like

42:10every relationship has Evolution but there is a Evolution for the good with the relationship with your singapia even

42:17though it’s uh so many things that you go through and uh I have a yeah do you learn to

42:23enjoy your kid and you learn to enjoy the time that you spend with them and the things that they do then the Nissan

42:30light to this very hard tunnel that we all go through

42:37and I think you and Mark I think you Marta and Jr is adult parents of adults

42:42who have been through so much staying engaged with srf and sharing your wisdom and your your insights is is

42:49a gift for all of the families so we’re grateful for both of you um another mom just wrote in the

42:56question the huge responsibility but also the huge sense of helplessness really summed up how I’m feeling at the

43:01moment daughter is only four and diagnosed in November with syngap thank you for sharing your journey

43:08yeah man I remember when my child was four you know I we and we weren’t diagnosed until 16. so at four I was

43:15still being told oh yeah you might you might talk by five or six so that’s what I’m hearing from my doctors at age four

43:20and so I’m I’m just really doing everything I can to help him talk but um but looking back I mean he’s such a

43:27sweetheart we’re we were we were really connected and um it’s just a lovely lovely time so

43:35um I think I think understanding this in gap biology really helps I think

43:40understanding you know in the book I have a there’s one of the subtitles is like I was the

43:45one that had to learn it’s like everyone kept telling me oh he’ll learn you know oh he’ll learn to eat when he’s hungry

43:51well actually no he won’t you know he’s got some pretty basic biology that’s not allowing that to happen oh he’ll learn

43:58to accept the school day schedule it’s like actually he won’t you know he’s actually not going to and we’re going to

44:04learn to do something more in line with what is is uh appropriate for his

44:11neurobiology um so I think just all the all the all

44:16the hearing like oh he’s gonna learn it’s like well after he was 16 I was like oh yeah he wasn’t going to he has he has this non-plasticity and a

44:23synapses you know so our job is to learn how what what kinds of environments what

44:30kinds of again I want him to develop and he does he does develop he does do some sign language he does communicate with

44:36me he does do a lot of stuff right he does enjoy a lot of stuff so I’m not

44:41trying to make him like his brothers but I am trying to understand how he can be his best self and what that looks like

44:48for him and how I get the world to how I get the world to get on the same page

44:54yeah I want to share a story I’ve had the I’ve had the pleasure of working with Jr as a as an SRI volunteer for I I

45:01want a couple of years now it’s been a while and um I want to share with the audience that Jr is

45:08it really really thoughtful and smart in case that wasn’t patent and it’s it’s this is a really precious

45:16opportunity to just throw questions at her because I remember we were together once and I don’t even remember who we

45:21were talking to but Jared and I were talking to someone and and the issue of consist of being kind to

45:27them came up and I said well what does kindness mean for a singapion and and jairo’s like kindness means consistency

45:35and so Jerry I’m going to ask you to elaborate on that in just a minute it was a it was a very important teaching

45:41for me but I just want to encourage the audience either in the qra OR raise your hand and speak the chance to throw

45:47questions at Jr is is a chance to learn something so don’t hesitate but while people are pondering that chair can you

45:54kind of elaborate on kindness’s consistency yeah

45:59um yeah it sounds weird right because I don’t think kindness is consistency for me so I think I think part of this

46:05learning experience is it’s not it’s not do unto others as you would have them do unto you it’s like figure out the other

46:12figure out the other person and what is good for them and so

46:17um I think one thing that uh one really good example that I can show

46:24you with a fail for me um and I was I was just doing my darndest right I had three kids uh at

46:32three different schools they were private two were private schools and one was the special needs you know it

46:37self-contained school so we’re going all over the place and

46:43I I took Joey in the car with me took him in the car with me and I had to take

46:48him into the the schools with me to get his brothers out and he really didn’t like it and so I did the thing where I

46:56would sandwich every activity he didn’t like with an activity he really did like and so we would

47:03you know after getting his his second brother for the day we’d go to the zoo and we’d go on the carousel well he

47:09loves Mary Poppins he loves the carousel scene where the carousels going around

47:15and then the horses go off the carousel and then they start running on this on this racetrack right he just loves that

47:21and when he’s on a carousel he’s just I think he’s convinced that his horse is gonna like go off the carousel and run

47:27down a racetrack so she gets really really excited and then after a while he gets really really sort

47:34of Terror it becomes Terror it’s sort of like an addiction cycle where you like something and then you like it

47:40more and then you like it a ton and then you need it and it’s not really satisfying and then you really need it and it’s still not satisfying and then

47:47you’re getting it and you’re screaming so it’s kind of it’s like this weird cycle and then all you can do is

47:52extinguish so anyway my point being consistency what would have been better for him was

47:58if I had just had a babysitter sitting at home with him that would have been better than taking him into the into the

48:05schools where he didn’t like it and then taking him on the carousel where it was too much so

48:11task demands extra work things that are hard those are bad too much of that is

48:17bad for him like some of that’s okay but too much of that’s bad for him things that he really likes too much of

48:22that is bad for him so it’s that consistency it’s that kind of neutral engagement and my kid is one who just

48:30would um just stare off into space he’d shut down he wouldn’t engage right so I had a

48:36kid that was hard to draw him out and so I leveraged every single thing he liked to communication into work into him

48:44showing me his intent so I’d give him a tiny bite of chocolate ice cream and get

48:50him to say more you know and we’d do that 100 times in a row right a little cup of ice cream 100 bites yes and say

48:56more 100 times right um and I don’t mind that that was okay

49:02because he never went nuts over the ice cream but the the carousel he went nuts over elevators he went nuts over lots of

49:08lots of things like that so I don’t know if that totally answers your question but the consistency it’s the the

49:14consistency is sort of like sameness and seeing how they’re neutral neutrally engaged neutral emotions plus engagement

49:20equals ideal life for my son

49:26the two two comments have come in um one from um SS once it turns once the pleasure

49:34goes to Terror what do you do how do you de-escalate if it goes that way

49:40yeah well that’s I mean that’s just called you know in in the lingo of

49:45behavior is you just extinguish it you just quit doing it you have to like 100 never do it anymore every once in a

49:51while we would have to go to some doctor that needed an elevator but usually we don’t um so we usually just don’t go somewhere

49:58with an elevator um that that can be hard depending on what the thing is sometimes that’s the car

50:04right sometimes that’s the car so I think that I think that for all our kids they have

50:10a very good visual memory and I think that they even if they have some motor delays

50:18I think they have they’re like pretty good at getting themselves around and so

50:23I I’ve noticed that my child being able to move himself around is much better than being stuck in a car now being

50:30stuck in a car you kind of likes the car and he has a good visual memory so if we if we’re going down a street he’s he’s

50:36seen it before he knows where he is so he might start screaming because he he gets to a place where he wanted to go

50:42left but we went straight so he might be screaming now I wouldn’t I won’t necessarily understand why

50:49um so anyway I I think that there’s a lot of sort of sensory stuff involved with our kids and

50:56I think keeping track of their what they’re seeing all day is really important I think they can get overly

51:03stimulated visually um and then allowing them to do the things they do

51:10well is important and I don’t mean on screens I don’t mean in the two-dimensional world I mean in any

51:15anything they want to do in the three-dimensional world if that’s take a bath oh my gosh we used to have a bath like I

51:22don’t know I just keep filling it up with warm water right just let some out fill up some more warm water you just let it go for a long time and we do like

51:30shaving cream on the wall in the show in the back right like that’s a good that’s a good sensory thing to do that

51:37is it’s way better to do that for two hours than to do screen time for two hours

51:42um but you have to be careful with the the Heat and stuff so anyway I I’m not sure if I explained

51:49that but I’ll let Mike uh keep going here no you I think I think that’s a great answer and then just the last

51:55comment that’s come up so far is I don’t see any other hands raised is um because I think people are really just digesting

52:01this is really it’s really such a gift to your book um one person says Jr your Insight is so

52:07refreshing and enlightening it’s so hard for me and the world to try and enter our child’s worlds and make it better for

52:14them slash us and have a meaningful relationship so I’ve heard you say before you know it

52:21gets better with time and Martha reiterated that but yeah that’s what you say to that yeah I’d say that

52:27um I’d say that I have a favorite photograph of me and

52:35my son and he’s about let’s see I guess he’s 14. he looks tight he looks very small for 14 because he was delayed

52:41growth then but I’m standing on a beach and on a kind of like a low tide Rocky Beach and

52:48he’s standing on it like a big rock right in front of me and he’s kind of like looks kind of precarious and he’s

52:53looking down and he’s smiling and he’s smiling because he’s like trying to hold on and his arm is behind me and he’s

52:59holding on to me and it’s like I’m smiling because I’m looking at the camera and getting a

53:04great photo from this guy that I paid to take our photograph and he’s smiling because he’s right next to me and he’s

53:11standing on this rock right so what in here is our good why is this my favorite

53:16photo like it’s my favorite photo because we’re together and he is leading on me and he is assuming I’m there like

53:23he he just assumes I’m there we are like physically intertwined and

53:28we’re both happy and we’re both getting what we want out of the situation right so

53:34um now we’ve had tons of fun times on beaches and so that’s partly why it’s so

53:39important to me that we’re at the speech because I now have like I’ve spent so much time with just him and me there

53:45just him and me having fun at the beach um I love low tide he likes low tide so

53:51it’s it’s a it’s a nice thing I think it’s like I think it’s really easy to have this

53:58connection when we free ourselves up from the responsibility of fixing them I think it’s the responsibility of

54:05fixing him that is what weighs me down because every moment that I’m not fixing him every moment that there’s no one

54:11that can help me fix him it just feels like failure right and if I feel like a

54:18failure I’m not having a good connection with him so it’s it’s really a paradox

54:23it’s a paradox because it makes it sound like I have to stop trying to help him develop

54:28it’s not really that it’s more like it’s more like just accepting that this

54:34is taking longer than I thought and when a treatment for syngap comes along it may may have a meaningful change he’s

54:41he’s not going to be he has two very high achieving Brothers he’s never going to be like his brothers right like I don’t have that in my mind but I do have

54:49in my mind that instead of him being like an 18 to 18 month to two-year-old that he might be more like a

54:55five-year-old you know like five-year-olds are really cool man like they they have conversations you they

55:01like start to use because in sentences like you know like it would be so nice

55:06it’d be so nice if we just could share you know a little more and what we do

55:12share is on a very deep level it’s it’s weird it’s on the surface level and on the Deep level and as a wordy person as

55:19a verbal person I kind of want it to be on the verbal level too so um I don’t know if that explained

55:25anything for JJ but uh that that’s how I feel about it like

55:32try try to release yourself from the responsibility

55:39of fixing him because that will allow you to connect with him and when you can connect with

55:45him you can better fix him because what we really want to start to be fixed so it’s it’s a paradox it’s it’s not

55:51exactly it’s yeah it’s a paradox amazing

55:57why do I drag this out we’re really grateful I am confident this will become one of the most watched webinars we’ve

56:03ever had um for people who want to go tell their friends to watch this normally takes us a couple days to process these and put

56:09them on the website but if you go to the syngap researchfund.org website and you click on

56:16resources right underneath blog is webinars and that’s where you will find

56:21this recording thank everyone for coming if there’s no further questions thank you for sharing

56:28your time and your wisdom Jr we are really blessed to have you thank you so much for inviting me bye

56:34everybody