Hello and welcome to the if we knew then podcast I’m Stephen Saux
and I’m Lori Saux
and today we are joined via Skype by Melissa Kynoch from Birmingham, England. Melissa is the mother of two; 4-year old Dei an 8-month old Bertie. The family has risen to some prominence in the Down Syndrome community since several clips of a BBC1 documentary series, they were featured in, have made their way around social media. The series is called “Life And Birth” and during the program it is revealed that little Bertie is diagnosed with Down Syndrome. Melissa we are absolutely elated to have you on the podcast.
Thank you this is a surreal a an exciting and a little nerve wracking I have to say I bet it’s been a little overwhelming I know we saw your clip from the BBC series that you are featured in just randomly I saw randomly on a Facebook page post it wasn’t something that I could dive into because we’re not in the U. K. but even just your clip in the little trailer they had a couple trailers they had if you just was so your fall and we just really want to get in contact with you I know it had over three million views and and I know that’s probably what’s a little overwhelming and very eyes allowing and I think and I think it’s on about three point five million views nine and see the actual at this stage and that was watched life I think that was about two point six million views so it’s been very popular I think this series as a whole it’s been very popular Pataki said he’s been very popular in the amount of messages I’ve received it’s just it’s still regulates them very magical yes how did that happen how that all come to be that you were featured into the in this docu series at at at the hospital has the rain Facebook page and it was one of those nights where I couldn’t straighten and adjust pricing straight size book and I thought I’ll have a look at the hospitals HM and it was an accident that it being put on just a few hours beforehand that they were going to be filming some bass if anybody was G. to give bath and now I am okay so September eighth to give them a call when I wasn’t you until the end of October but I thought that sounds like it could be fun and at that point until we D. had left his diagnosis so I thought that would be and that that is a set box that I could get someone and and just system a good opportunity to fly the flag for him said I emailed them just briefly mountain with art lightness who are licensed and and what was happening with back today and the next day they called me we had a chat for about half an hour on the side and stay lights the sound of my story we did a Skype cold %HESITATION I think it was about two weeks later reached a record day to show the rest of the team and then with a couple of days after that they they told me that they would like to hear from me and I feel my pregnant say not to worry that that he wasn’t given until the end of October and they just wanted to see how how it went I knew that didn’t mean I would necessarily be featured on on the same respect they were going to be filming lots of people and they were casting three rights and but I I thought with the amount of times that a pregnancy that they spent with maintenance I think it was pretty obvious that we what we were going to be included yes Sir this is a spontaneous spontaneous very met that that works out really well so can you tell us a little bit about your story for those who are listening who weren’t able to get the entire show yes as well I think we will feature and so to raise sends one I think because of my age and been an older mom and and how it I need a reason maybe it was for how excited I was to be pregnant I like to I think that was kind of regardless of a thirty start nation something that kind of added to the story but I don’t think that necessarily a chose to film us because %HESITATION I was carrying a baby with down syndrome I think it was more probably to my attitude towards it was what was what I wanted to include this in the in the show is set in at yeah as a Sam an older mom I’m forty five and a half very proud moments too fantastical east Mari Altice’s school Daddy and he’s for the S. A. is seven and a half themselves have darkened as well and and that he has and thanks injured at and those boys where unexpected miracles at odds and I think that isn’t quite the same as what they showed in the in the in the episodes was my desire to be a mom some little gal always wants to be a mom always wants to have children and that it hadn’t happened the may and see what happens at forty one I have died and %HESITATION you don’t have to have a best of seven million cigars or anything and they’ve managed to really capture I’m not sure wants to be a mom has to do something that was just lost that we desperately wanted an after tax why we didn’t think for one minute that it would happen again I am the only one of these small blacks and and then I was completely unexpected seven AM I think that’s yeah that’s that’s what they featured specifically featured in the show thank you Sir %HESITATION of course full story ordinal watching your clap I think that’s what struck me the most was your excitement and for lack of better word just the just the acceptance of my son’s going to be born and he has down syndrome and that’s so refreshing because I don’t know what it’s like in the U. K. but over here I know what I experienced a lot in my pregnancy was even with my daughter was you know the heavy handed push for testing and the tones of well you better decide and you know even those words being presented to me I it was just so nice to see %HESITATION mom who was pregnant just being pregnant and allowing that because I don’t like over here and what my experience in a lot of different moms that I’ve spoken to their experiences once you get that diagnosis the world chefs and attitudes towards you become it’s just it takes away a lot of the joy that we we want to experience as moms and we should be able to experience and I do I loved that I loved your attitude I just loved watching that your experience was here’s a mom who’s going to give birth and maybe the focus was your age and then secondary was O. N. your date of birth his diagnosis and it was it but it really was inspiring thank you Hey I think I I agree with you I think and I think that is so great really captured that very well but that was my reality and you know the I was very very excited about it more pregnancy I mean we when I say he’s a complete miracle that’s it that stuff didn’t believe hi last four once that I was going to have another baby something that I’m sorry desperately one chase on could not believe that that was sent happens to me Gary and and I think that kind of looked off on people and did I yeah I hear you and some of your experiences and I experienced a little bit of that in the beginning I am on my hands accompanist hospital appointments where and it was very early on in the receiving party site may cease and and it would stay talk about down syndrome and that would be followed by and we can discuss the termination if you want to buy something that shape in two years and if any happens at a couple of times because I make that one in the books I since you know he sent his name’s destiny and if you don’t please that mentions emanations any gang and this is quite fantastic we’ll put it in your nights and it was never mentioned to you guys and everybody that I came across one whether it was you know friends family %HESITATION medical professionals were excited for me I am a public setting can fluctuate with the anything else but everybody was genuinely excited for me and I couldn’t I never understood and the reaction of the film Craig towards me they are really treated me like I was sent unique not my attitude was unique and I never got my head around that until until you realize that and nine nights ten pregnancies in this country and contamination when they get a diagnosis of down syndrome and then I realized I can maybe I am a little bit different to the norm %HESITATION because I’ve definitely not wanting to have a termination and and because I’m still I’m pregnant it’s never gonna happen for me and I’m too old this is fantastic and I that was more important than anything else and so I kind of feel I do understand hi there I asked you to me now is that it probably was a little bit different to what they’ve experienced %HESITATION what a normal day yeah well you mentioned that the series and I’ve been a bit of a soap box for you and and it definitely came across that way for me just seen your love for both your boys and the just you as a mother and and and that the focus became love and the folks speaking family you so Michael is I know I’m biased but they are awesome on that there’s a scene that is not and I ended up being able to watch the entire episode and there’s ways to do that if you don’t live in the UK but but the BBC player is pretty strict about you having to be listening from a device in the U. K. and and it’s difficult even if you are prescriber B. B. C. and left the country you couldn’t you couldn’t watch that Sir but I I was able to watch it and there’s a great scene where they’re giving you a tour of the hospital and you two are just so beautiful in that scene and and and your your voice asking about his soon to be younger brother and and it’s just really sweet it was also nice to see a little bit of the facilities that you have I guess some of it could be that there’s a film crew found you but but the administration there seemed to be so welcoming and and open and and and you would no problem the difference between days of pregnancy and and birdies how you were treated but it just seems such an opening replace relationship there what does want to show you the facility and I guess they were shown to the Nick you yes that’s right and R. I mean I you know I have no comparison with the rest of the country but I was so grateful to be living in Birmingham when I got to start nice because there’s there’s two hospitals that are part of the same trust and that’s %HESITATION Birmingham women’s and Birmingham children’s hospital in Texas and I love to talk I mean in both hospitals and that both of them a center of excellence so you it’s just ground breaking what is the team to do that but they are top of their sales and cash back because he received in in various hospitals was outstanding not just from a medical point fifty eight but hello to all of us as a family we spent all together we spend about twenty weeks in hospital most of it at those two hospitals and then another one which is a bit more like let’s make jam a hospital and all three of them the staff has treated us like family every time I walk through the door especially in the okay because that was an early on it was my first experiences as a hostess will like that and they just really looks after herself out while Kim’s image as hers listen to a significant a post to his dad he spent you know he’s he’s such an amazing boy he’s very broad HM land he’s very loving and affectionate but demanding and salon and spa Southwell one Raleigh NC nine Sarah and the S. and trying to keep it used to be at the time trying keeper three wild and turned in just small corner within the unites in intensive care unit that he will be destructive ways says quite stressful and said the staff were just incredibly supportive and watching the entire series said as north and back that comes with it the film cremated captured that very well well even as a young mother you you really were so natural with the way you talked about down syndrome and just at ease about it what was you are maybe can give us insight what was your feeling when you when you heard the diagnosis initially where a hot streak ten point what my feeling was a diet diet by dancing drain pots of tea because there was so many other factors going on at the time so I have time %HESITATION but it might it must must come assist fourteen weeks and they told me I didn’t want to be the tasks I wasn’t interested it wouldn’t make any difference so I just saw okay I don’t need tonight but because the new call waiting lists are large that procedure is that hacks tell me anyway so I can have it and a good understanding of what that could mean a real saving needs are that could be tags or keywords and those babies aren’t compatible with life said I’m just always devastates it because I didn’t want him to doggy in night and say the whole weekend that was on Friday morning I have that scare and if they don’t decide to go on would have the blood tests to find out what was happening and I didn’t get those results until the G. sign warning that weekends was probably the the lowest the lowest point of my pregnancy as it is I was devastated very worried not because the injured because I just kept trying please let it be done sometime please that it began center because I knew he wouldn’t survive if it was anything happens so it’s kind of hard to really separate what my feelings because my feelings lack complete relief is that really what are signs that when then had set so the Texas stands and I find that that he had spent time she drove us to relate then I got the diagnosis straight lines that he had an a serious heart condition side down syndrome took a backseat and he’s hot condition was what would make the most sense it never I mean if I look if I didn’t worry about I think that would be true I do you worry about IT is very an educated aren’t dancing dragon so when I’m out on the type of person that I am a light to read lots of stuff I want information on one hand I south Solomon to be educated about I’d say and say the stuff that I may well it certainly may say you know and maybe just sees less of health conditions that I was presented with the rest it was really at that status at that point there was nothing on the websites %HESITATION L. dot merry meet that kind of success my anxiety just increased the %HESITATION so I made the decision to be very selective ways Adam with anything what I read on the internet and the and in fact my my cousin bought me a book and it will say it’s a book by a parent by a woman who has a son and defensive driving and and make this book with the hate values this comical joyous point of view from parents arms on and it wasn’t just me that’s not what I got from the book you know I I I in fact the books right now I think it was just such a missed opportunity with all the humorous things that happen with with your child you know and then yeah that was very disappointing and I think our sheets well I I think you know I mean right now maybe there was some past resentments that she had been able to let go off with some friends if I should be treated in and that was really kind of guy that we’ve we’ve in the book and I am I have to say to myself that’s their journey and margin you will be very different and on the different passengers it’s one story that she writes by she’s had a dinner party and that her son had started him on the hook and have horrified she wasn’t that just devastated and embarrassed me I just can’t think of anything funny I mean that would be brilliant I would say I would encourage both my children have given the carpet you know if the if I had to deposit think it’s hard to guess I would have tried with thing that was in every state would make the night so I have to just like right from the start sites myself this will be our Jenny and Jenny will be different from everybody else’s and I’m not convinced that that that helped you to say that I wasn’t worried about acting and wouldn’t be true I am but he didn’t dominate it didn’t dominate my pregnancy by any stretch of the imagination yeah it’s funny you should mention because that was our experience when lamb was born ten years ago it was the same thing where I think people with good intentions would hand us something it was the only thing that they could give us and they thought coming from you know this is really going to help and I think I was led three different places and none of them instilled hope and said that they just filled me with fears and sadness and I thought this camp yet this can’t be all that’s out there we’re gonna make a new story and we’re gonna put things that are hopeful out there so that when people come behind us and they have questions there’s hope it’s not you know that the deficits the devastation and the purse perception that it’s devastation it’s hope and beauty and these these good things that that you’re blessed with an and the thing about they said about perspective I I get I think that just having that perspective of I want my son to live in and I know that that was our that’s that was a gift to us as well because the at Liam also spent time in the neck you and %HESITATION I think you’re given that I think it takes away from the the wait is just the down syndrome goes on the back burner and you’re focused on what really matters yeah absolutely yeah absolutely and you felt supported by your friends and family as well as I could get some that that that isn’t a given even with your attitude but %HESITATION how did your family and friends respond hi everybody everybody’s response to me has seen incredible it’s been very positive and very supportive I’m in a really did and I didn’t I haven’t experienced anything negative I am from from any participating and a negative comments and negative attitudes from anybody until and this social media platform that the BBC site and this this is many many comments and ninety nine point nine percent and the comments are beautiful they’re studying and and supportive and this made to order them but there’s been the odd one and that is that’s a negative about down syndrome and I can pick up within the first week in the first couple of website scan going to be negative so I don’t read anymore I’m not I’m not interested you know they they have entitled to that opinion and I’m entitled to ignore it so I am not interested I’m not I’m not interested in having anything negative %HESITATION am I right meal all the boys since and sit there okay for Wyoming response that I’ve had is just being loving and cartons are those the one comment that I think I did great and I am in my absolute favorite I think there’s been a few thighs and comments on there and obviously I haven’t gone through them all but but my absolute favorite and I think this person I am is clearly for quite some time into thinking how that could insult made but it’s just I’m actually thinking of changing my Instagram account to these and they just that comment was brain dead old woman just so you’re not wrong that you’re not wrong now I thought that was absolutely classy and it’s brilliant and it made me laugh and I mean glad that that person showed that those with may not from that and it’s still about Macy’s following the step by Percy I don’t know it yet I don’t know I can’t say I don’t know I don’t read it yeah my my friends and family and brilliant I’m very lucky I’m I’m very blessed that I have a very a large circle a friends and %HESITATION agreed his girls stock on hand that are like family to me and I his being hugely supportive right my pregnancy and sincerity is born and I have contracts we signed with the girls I’m and I’m excited about it she said women over the weeks that we’ve been in hospital we’ve got what’s that great all over the weeks and weeks in hospital they were the ones that I reached out to women on a daily basis and they’ve been hugely supportive very invested in back today in the everybody’s been massively invested in people who’ve never matic most of my friends and family actually happened yet because we spent so much time in hospital and then when we carry nights we went into lockdown needs when we we we have locked down before it was a facial hair because we were worried about the fact that say so there’s things saying many people haven’t had contact with him yet but if they say a lie he says they feel like he belongs to them as violent and say it best his family’s extended huge leg and had some my baby shower I decided I didn’t want to have a normal bike charm thanks to have down syndrome baby shower and it was it was beautiful it was an all guestrooms are really hot dad we have to at my moms and dads and hats and lots of information that I actually have contacted the down syndrome association and they sent me a lot a lot of information my kids and I didn’t see into packs of people it’s just the right language for them to start using and that little bit more understand Danis and that is what that state is Jenny could pay how are you going to do today and same and everybody Cagney yeah we have a big party in the garage and it was it was sent in and we celebrated St century before order was kind of really need much more expensive drug is safe yeah they’ve they’ve been with me every every step of the why it’s just everybody he’s being extorted for maybe not the kind of dominating feature is excellent men’s and right my family has been amazing especially my cousins safe they’ve been very much involved in the practical side so and if I’ve sent things that that are wanting to return times and they’ve let them %HESITATION they’ve read books so they they want to lead mascots on you know they they really helpful at the practical side which makes me feel like they’re involved Moore said you have to speak really look at it I’ve been really lucky with where we are very much loved by a lot of people well that’s wonderful do you have such a great support group you were talking about social media and and that ninety nine point nine percent of that was supportive I have noticed that the social media presence in the U. K. surrounding down syndrome is really prevalent whenever I I look at Twitter Facebook it seems like so many of the groups and dedicated pages to down syndrome R. in the English Isles honestly I mean even the there’s an Irish group as well but it seems like a lot of U. K. group and so that prompts me to to wonder what the supports are like in your area what obviously you you felt a welcoming and warming attitude at the hospital and from the doctors and and administration now that you’re out of hospital and and at home what kind of supports are available to you I guess the supports privately you could take but what is water supports that are available to you from your country I say like sorry much faster for that I say I am it’s been difficult to fully connect with each of the substance at the moment because he has stayed in hospital for a side arm and then a society as soon as we can we’ve been in locked arms state he’s had his appointments at the moment arrives at the site why the meeting face to face sorry I haven’t been able to fully tapi and what’s available to them but he just he has a whole team of specialists looking off to him and the whole plan syndrome community and swipe what you sad I have no comparison to anywhere else but I feel like in in in England and in Birmingham there is massive massive support for the dance finance insurance and dancing champion it say all right when I found out about it that I see when I was pregnant I join the down syndrome association that was the first thing that I did and then I Google my local currency trade support great and I suspect they every Monday to have the same way they meet monthly or the salmon’s meets monthly and a half maybe M. session activities in that game transmontaigne dies irae city it’s just the whole whole family that waiting to to welcome Mrs and support system I have that I’ve also joined and enter the group which is called wouldn’t change a thing and I found a big connection I am with the families and their alleged that the models on that date being who’s very very supportive it’s specially walkthrough in hospital Hey Adam didn’t CSS United they gave a very very very proactive in keeping in touch to make sure that there is anything I need agents and yes really really value tax medical and professional flag means that he has always lived in Africa is stepping it saves time as you guys that this you have to have health insurance in in South Africa there is still a National Health Service like the receipt say I mean I know what it’s like to not get free health cat annoyed constantly blown away with what we have here what does he has any safari I couldn’t get my head round E. E. has said the pediatrician and stop the ecology HA I he has SPCA has a speech and language especially as he has a dietitian we’ve got five GPA our house was attacked community S. U. S. A. and she’s a new rate disability pediatrician I mean it’s and I can pay for any of that and it’s it’s taught K. it’s it’s incredible it’s incredible what is available yes early as in creation supports a high he has sent yeah he has a lazy has absolutely days thirteen cases not he doesn’t want for anything he’s a he wore there is how they say anything or not but he’s going to experience the need to come in is going to be a team on hand to help me and it’s fantastic well I’m very jealous it makes me so happy for you it does it’s beautiful it’s what you want for your citizens I mean why shouldn’t everyone be able to get care like that just everyone get health care that’s the most important one of the most important thing is I mean our health and to include all this inclusion you half for inclusion for that that he is accepted in that community as well where they’re gonna not just do the minimum form there they’re throwing a lot of things out there that’s really he’s gonna reach his potential I’m very curious to see you know as as he progresses the support you get in school and stuff too that’s I’m assuming that’s going to be great too but I think it also talking about the medical and having the inclusion that’s that sets a tone that that sends a message as well thank you Watson and you know inflated what what you need well will help yeah absolutely I’m very lucky that I have within my friendship circle I I have in people he he wants to see a therapist and he do you do you do with that speech and language with adults who stands in judgment after after I’m very very lucky that I’ve got friends who I can tap into their expertise as well that’s great because I know speech has been one of our challenges getting the speech support and I think it makes such a difference all around just to be able for for you know for Liam to be able to express himself to support him to do that that makes a big difference I think that’s probably my my biggest fair and it’s not something that keeps me awake at night thirty it crosses my mind to it you know every now and again it’s will that CPI able to communicate with people and the card it stands such a barrier between him and everybody else and this is a family we can we can learn markets uneasy easy can do that we can learn to sign with him people don’t do that you know and and and and that that’s my only fear is that embarrassment as being with somebody who I don’t understand and it’s not just not talking about just like a disability things just even somebody with a very strong accent I mean you’ve heard some of the accidents in England gosh we got to talk to somebody from Newcastle because god is going to stand them you know it’s it’s it’s not disability things just back in Paris in are I can’t understand what you’re saying and find that you know hard to communicate with somebody and that’s that’s my that’s my faith in him is I don’t want those social barriers staff for ram I’m glad you mentioned magneton because that’s something I hadn’t heard of until I kind of did a little research and some connections in the U. K. M. A. K. A. T. O. N. a great place to go is we talk mac A. thon dot org they’ve been developing this program for like forty years it’s %HESITATION language program %HESITATION that I believe it is it really can be personalized to suit any age or ability and it’s just to me it’s a simplification of sign language just to help communicate make things a little less less frustrating and I found on Twitter Nicki has a great series of magnet on videos that she co stars with her beautiful daughter Lucinda and the Twitter handle is at mac A. thon Lucinda you should really check it out Nikki does make it clear that she isn’t an official tutor of back in time but that page is a great resource for parents looking for more information %HESITATION but I have to tell you Melissa I I can guarantee you that you’re going to communicate beautifully with Bernie and Betty’s going to communicate with everyone around him you say so much with the Saudis all right he X. started shooting hi I mean he’s seven months and he communicates so much when he’s looking at yet which I never experienced this we’ve been it’s Daddy at the site I mean you know Davis said I need to go ahead by eBay but he didn’t communicate with these are you slut but he does he’s just blows me away stretching our podcast called if we knew then if you can just take something from us that we’ve had that same fear at the point that you’re at and Liam communicates us with us and such beautiful ways I mean not only through speech but other ways but even his speech is not well that’s something we’re really working on that’s not his his strength and he communicates with everyone around him his sister %HESITATION and and us and please set yourself at ease it’s not a worry you should be having and I’ll tell you that Liam is very patient because he knows what he wants to say and he knows what he’s saying unfortunately we didn’t always have that we have yet to get the support and the speech therapy so we work with him %HESITATION but what I find is Liam is the one who’s patient with us he’s the one who’s saying something and you don’t necessarily understand it so he’ll try to get you to understand like trying to show you and he’s very he’s very patient with us as far as to understand him he’s staying credible to be patient with yet because like what child is patient with that parents right and %HESITATION if Steven hadn’t done it I was gonna say it to you just put that worry out of your head just you don’t he’s gonna communicate his gonna talk he’s N. at sounds like you’ve got all the supports and you’re gonna advocate to get those supports and just let let go of that worry matching this about patients it reminds me of a U. K. connection as well that we Liam a couple years ago what would sign to us certain she doesn’t miss I was signed a certain things that we %HESITATION we started sign I remember he would say the word car like you wanna play with this card cars a C. A. R. S. but he also had cards like a deck of cards that he want to play with as well and those two words are very hard for him sometimes communicate so he had to sign for them the once he had the signs we knew exactly wanted cars a cards and he created those signs the signs and and and we we just went with it we try to teach us some signs and and he he gets that too but if you want to come up with its own sign sure that works but he would communicate does something he want to watch on TV at the time we were watching Downton abbey a lot and he put his hands up like a crown with we with this two thumbs up to his head on on his temples and he would say Downton abbey and we would say great Downton abbey and he would get excited kinda and then we would we plan he would pay out a little bit he would be upset but then he’d end up watching them the love dot net show he does love down Abby so well find out he wasn’t signed in Downton abbey his fingers in his hands up where like antlers and he was trying to say he wanna watch Bambi Bambi sounded like down Abby and so we gave him a few Bambi nights because the pain back you know he is very happy about it too he he he did have a sense of humor about it Moore says we’re so happy to talk to you I know this is I was looking forward to this all all day and be safe your story is that’s just up lifting it gives me hope and it gives it reminds me of the power of of what your attitude is and how that helps to influence our children and our lives so much your excitement just for being pregnant was what was amazing to me even though we know your story was you were pregnant with a child with down syndrome I love that that wasn’t even a thing it’s just I’m pregnant I’m so excited this is going to be my last time to do this I still can’t believe well look at both the boys and I just think if that happened it could only be sorrows side last I still got I didn’t call that those not be it all the fact that I’ve got two children it’s just hits them back east and it’s incredible well please hug those two boys for us and give Richard R. best and your mom are best thank you Slammin Sam fare out of this well.
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