Latest / Tom's Hirschsprung's Podcast / Episode 9 - Part 2 of my interview with Shellie Warner

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Episode 9 - Part 2 of my interview with Shellie Warner · Tom's Hirschsprung's Podcast

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  You are listening to Tom's Hirshbrung's podcast, where I provide a look into the
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  remarkable experiences of the most inspiring people around Hirshprung's disease and sports. Hello and
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  welcome to episode nine, which is the continuation of my chat with Shelley Warner.
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  In part one, if you haven't listened to Part one, we talked
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  about her son of Donnis, his diagnosis with Down syndrome and Hirshbrungs disease and
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  a fascinating story told by Shelley about Donnie and his experiences and where he's up
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  to at the moment. In Part two, we are going to talk about
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  Shelley's charity work, the fantastic charity work that she is currently doing in the
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  charity she's working with, as well as stay tuned to the last part on
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  this podcast where we will have a very exciting activity that Shelley is preparing for
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  and taking part in. So definitely stay tuned to the end and welcome back.
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  Shelley. We want to talk about your charity work, how you got
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  involved in various charities If you wouldn't mind starting off with the Nottinghamshire or Down
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  Syndrome Support and how you got involved with them. Yeah, So the nottingham
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  Shire's Down Syndrome Support Group are such a big group that of different families who
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  have got children living with Down syndrome in the area and not only just in
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  Nottinghamshire but in the whole of the Smithlings. Really the leader of the creator
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  of that group, Helen Poppins, has been such an amazing support for us.
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  We actually were given a little welcome pat when we first had a Donis.
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  They dish out these homemade gift bags to the two hospitals in nottingham that
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  have like different leaflets and information packs and activities that they put on and stuff.
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  They have like a football team and a dance Warriors troup and they really
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  do so much in the community. So we were straight away in the hospital
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  in the NICU with the the DS clinic supervisor and she was giving us this
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  welcome pack and being like well done and celebrating Adonis's Dan syndrome diagnosis and we
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  got a little present, a little teddy bear and a blanket some duties.
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  It was. It just so thoughtful and just really what we needed to start
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  uplifting our journey from the off, Like, I think that the support group
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  and what they do for these families is just so pivotal in starting off their
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  journey on a positive note and really welcoming them into a complete community where you
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  don't have to be afraid of your baby's future because you can see for a
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  fact that all these people are thriving with the same diagnosis, and some of
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  them worse diagnoses and have a lot of problems and still get on with their
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  lives and really really just blossom in the community. And they've really been one
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  hundred percent supportive and just what we needed. I mean, we go to
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  their toddler support groups and I talk to the other mums with the babies who
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  have Down syndrome as well, and we've really met friends for life through that
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  group, and I'm so grateful for everything they've done. I mean, yeah,
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  it was just just what we needed. I think, fantastic. Yeah,
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  that's that's really really important. And the point I'm going to pick up
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  on about welcoming you in because you said in the last episode it can be
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  just an initial shock if you're doing the child that's down diagnosed with Down syndrome
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  and having that welcoming space and that sort of don't be afraid, and the
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  gift bags and all of the fantastic work that they do and I imagine can
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  be an excellent help. Really yeah, I mean it was complete one eighty
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  to how some of the doctors reacted to the diagnosis. They were more apologetic,
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  Oh, I'm really sorry that you've got a diagnosis of down syndrome in
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  your little boy, And I was like, why should I be sorry,
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  And like, I feel like that was who he's supposed to be. I
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  couldn't him in any other way, in any other light. I think he
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  is exactly what I needed anyway. But he's really showed me and his dad
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  that life is just not for being taken for granted. It shouldn't be and
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  and everyone is should be really grateful for having such a magnificent light in their
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  life, like ad honest and really teaching us what life should what your life
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  should be like, and how it should be lived because they are so so
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  positive. All of the children are the children and young adults they work with.
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  The support group work with babies from when they've just been born. Actually,
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  they worked with one of the mums who was pregnant and had a diagnosis
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  in pregnancy, and she came to our support groups and really saw what the
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  babies that she was going to have would be like. And I'm still friends
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  with her to this day, and they really offered her the support and everything
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  that she needed. I was actually pregnant at the same time as a few
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  moms with who had diagnoses as well around the same time, and we were
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  in an IQ with one of them and met them and we both got a
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  gift bags and we left the hospital together. And then a year later,
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  our babies are celebrating their first birthdays together and they're really going to grow up
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  with each other and really see how each other work and how each other thrive.
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  And I mean he's standing already, Arthur Is. So it's just amazing
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  to see where we could go, especially with the young adults that they work
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  with as well. I mean, when we go to like the Christmas party
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  each year, it's a whole mix of ages in the whole of the area.
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  And we've actually got a different celebration now on the twenty first of March,
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  I believe, for World Down Syndrome Day, and we're having another celebration
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  with the support group and everyone's going to come in and have a rap for
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  and have a dance and you can really see how they're interacting with each other,
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  and the older children interact with the younger children. They interact with each
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  other, they're dancing together, they're laughing, they're playing and it's just so
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  warming to our hearts to see. And I'm so grateful to be a part
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  of the support group and be welcomed in by them and then be able to
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  offer my expertise in helping out at the events and volunteering with them as well.
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  Yeah. No, that's really important, And as you say, it's
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  really important for you to share your experities because everybody has a story and everybody's
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  will be sort of slightly different and you can take take some from other people's
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  stories and possibly apply them to your own. In speaking about about stories,
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  you have recently done an interview with not TV about footprints in Nottingham. How
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  have they been really helpful? So Footprints was originally introduced to me through one
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  of the mums at the support group and she just came in full of life
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  and to one of the meetings and just was waving these bags around with footprints
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  on and I was like, what's Prince I've never even heard of them,
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  and it's so strange to say that they've been around in Nottingham supporting a range
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  of people with disabilities, not just down syndrome and not just Hirshbong's disease,
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  but things like cerebral palsy, dystonia, different conditions that you might not even
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  know exist. I mean, a lot of them are rare diseases and these
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  people have trained for decades in how to really help these children thrive with these
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  conditions. It was originally called School for Parents, and one of their main
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  aims is to support the families and teach the families how to cope and how
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  to really help the children thrive in their own environments. I mean, we
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  go we go to Footprints on a Friday morning, but we use their methods
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  every day all day. It's like being shown how to be a first time
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  mum, but in light of their disabilities, it's very like rewarding. It's
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  very great. We've learned how to support his physio development, how to support
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  him in standing sitting independently, which he's doing now, and nuts TV were
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  really capturing what we knew about Footprints and how we came to work with them
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  and really highlighting the importance of donation requests and things like that, because it
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  really is difficult to keep going. They've been running for two decades now and
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  the amount of families on their way list they can't keep up with. So
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  having donations and different grants and support from all the different companies that are offering
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  help and support to them to keep going and keep the lights on and grow
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  as a charity is really really important to get the message out there, and
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  that's what not Stev we're helping us do and really showing the nation the amazing
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  support that is on offer to them because a lot of people just don't know
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  that they exist. Like me, I had no idea and that Footprints were
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  literally down the road from me, And now I work with them as a
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  volunteer full time, and I'm so grateful. They're the reason why I know
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  I know how to communicate with my son. They taught him sign language and
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  I've been carrying on with it and really helping with his feeding as well,
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  because he can now tell me when he's full and when he's finished, and
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  when he wants water and if he wants more. And I know how to
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  communicate with him, which I would otherwise not be able to do. So
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  they are amazing fantastic. Really that sounds like really fantastic work. And I
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  can imagine again you weren't alone in thinking that or not sure that there was
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  a place, a charity or footprints out there. I'm sure that there's a
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  lot of a lot of people that would be amazed to know that there are
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  other places out there for them that can really really help. We'd sign language
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  and really really important parts like that. I want to talk as well about
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  the not Down Syndrome Support book recently out. Is that able to purchase for
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  people? Where might they be able to find it? Yeah, so if
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  they go to Nottinghamshire's Down Syndrome Support Group website, they can order it on
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  their online shop. It's in a really amazing book filled with stories and different
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  experiences with all different aged children and young adults with Dwan syndrome. It was
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  put together by the founder of the charity, Helen and she really is the
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  expert on downcingndrome and what canelo. She knows everything, and if she doesn't
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  know, she knows someone who knows, and she really is like a whole
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  dictionary of knowledge. She has a son called Matt who has Down syndrome as
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  well, and he just is amazing. He is I think he's nineteen now
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  or twenty, but she's just been running this charity in his honor and they
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  really are just amazing people she's put together or everybody's stories. Mine was on
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  breastfeeding with Down syndrome because there's a lot of stigma around nurses and doctors discouraging
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  breastfeeding with when you have a baby with Down syndrome because they can't maybe latch
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  easier enough, and they can't they get tired very easy, so if they're
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  low muscle tone. But I give a few tips and tricks in that book
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  on how to really encourage the baby to latch and how to use different methods
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  if one's not enough or one's not working. You try this and really encourage
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  people to be able to try breastfeeding because it really does benefit them. And
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  especially with Adonicius hirschbrongs, it really helped him be able to process milk a
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  lot better. I actually had to be dairy free my whole breastfeeding journey because
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  you couldn't process dairy. So we were both dairy free for like ten months.
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  I think it was that I've breastfed for but he absolutely loved it and
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  really thrived on breastfeeding. And I think having the book that really explains not
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  only one story like that, but everybody's story is I think there's like ninety
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  six I think stories in there of different ages and different challenges that those people
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  have gone through. So it really is the bible for Down syndrome care because
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  there's not a thing in that book that you won't experience on your journey with
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  Down syndrome children. So it really is worth a worth a purchase. My
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  nursery where my boy goes is a mainstream nursery and they've actually purchased the book
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  to be able to help in his care and really thrive and get to know
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  what could happen with him and other children if they were to take on other
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  children with Down syndrome. So really thankful for their open mindness as well.
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  Yeah, that definitely sounds like a wonderful resource if you need it, definitely.
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  And speaking of articles and publications, I'd like to move on to modeling
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  because Donnie is also a model. Yeah done. Yeah, He's represented by
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  a base model casting in Yorkshire and it was so strange that he got into
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  it because I was a model actually for four years, and when I got
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  pregnant, I shut down my modeling page and just focused on him. I
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  had a lot going on, as you can imagine, and putting him in
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  my shoes it was really something that we could bond over. And then in
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  his first year he got an agency and I'm just so proud of him.
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  He was on the front of the Asda nappies. So there's a little picture
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  of him and his fake mum. It's not me, but on the front
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  of the Newborn Little Angels nappies in Asta right now, so go and have
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  a look. You can see his curly toes. But that was his first
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  job and it was amazing for him to experience that. And he's such a
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  people person, so he absolutely loves going into modeling shoots and meeting different people
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  and he's so happy. So I'm really really proud of him. So absolutely
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  brilliant, and he really enjoys all the modeling, joys the attention. He
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  is not camera shy in the slights, He's exactly like Mama. Really loves
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  the attention. I saw sometimes he fakes illnesses so that you can get attention
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  from nurses in the hospital as soon as we get there, it's fine.
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  And lastly, we did we did promise the listeners towards the end that we
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  did have a special announcement. Would you like to do the honors? Yeah,
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  So in honor of Footprints Conductive Education Center, which is the charity that
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  work so closely with Adonis and myself, I'm actually doing a skydive to raise
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  money for them. We are very nearly at our fundraising target, which is
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  six hundred and fifty pounds, which will be amazing if we can get there
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  and will really help support a lot of families and a lot of children and
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  really give them the tools that they need to thrive. And I'm really really
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  excited to do the sky dive, but I'm so nervous. It's something that
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  I never thought I would do, but been on my bucket list for a
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  while. And how I thought of it was, well, Adonis jumps into
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  every scenario with no fear and just goes for it. And the way that
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  he feels with standing for the first time and walking for the first time and
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  sitting up on his own is so small to other people but so big to
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  him. And I tried to think of something that would be as big a
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  feeling as he would have, and to me that was heights. So here
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  I am throwing myself out of the plane and hoping to land safely. I'm
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  sure you will best of luck with it. It's not like you can do
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  a lot of practice or preparation for it. Jump off a bed not a
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  great deal. When you see me just jumping off, jumping off some low
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  walls in the middle of nothing city center, you know that it's really proud
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  of practice, brilliant and just very Lastly, what are your your Adonis and
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  your family's plans for the future. How do you think the future looks for
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  you? We're really just open, to be honest. We're trying not to
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  plan too much. The most I've managed to plan in the last year was
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  a small holiday an hour away from our house, just in case we have
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  to go to the hospital again. That seems to seems to happen quite a
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  lot. Life is unpredictable, and I think just go with it. That's
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  literally how it's really forced me to not be such a planner. I would
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  love to be able to just carry on being an over organized planner, which
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  is what I have been for the most of my life. I really obsessing
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  over things and making sure that I'm prepared for every outcome. But it's pretty
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  impossible with a hones and we've just got to take every day as it comes
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  and hope for the best. I mean, he lives every day today,
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  has so much fun and just makes the whole world happy. So if I
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  can continue to do that for the rest of my life, then I've been
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  so successful brilliant. That sounds absolutely fantastic. So thank you very much for
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  joining me. The best of luck for you and your family for the future,
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  and especially for the skydive as well. Thank you Don, Yes,
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  definitely definitely, thank you ever so much for your time. Thank you,
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  Tom Bye. Thank you for listening to the podcast. Find us on Instagram,
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  Tom's Underscore, Persh's Underscore podcast to previous episodes Spotify by searching Thoms Herschmann's podcast.