A parent’s journey with Kabuki Syndrome

An interview with parent ‘Teresa’ on her journey with having premature twins @32weeks and then being informed of her son’s diagnosis of a rare syndrome called ‘Kabuki syndrome.’
Such an inspirational interview that shows courage, strength and determination of one parent.
Teresa’s Socials:
KZread - “Family Twin & Kabuki Vibes”
/ @familytwinandkabukivi...
Instagram- laviniereinteri...
#kabuki #kabukisyndrome #raresyndrome #disability #parents #deaf #deafcommunity #deafawarenessweek #premature #prematurebaby #interview #specialneeds
00:00 Intro
01:17 Q1: Tell me about yourself & your family
02:05 Q2: Tell us more about Jacob’s syndrome?
03:16 Q3: What were the challenges?
06:45 Q4: How did you manage?
08:38 Q5: What were your most challenging times?
09:55 Q6: How’s he doing at school?
11:39 Q7: What would you like other’s to know?
15:06 Q8 Good mental health tips
Music from Uppbeat (free for Creators!):
uppbeat.io/t/ill-kitchen/food...
License code: QZV5OECVXYYNA68X

Пікірлер: 19

  • @familytwinandkabukivibes9392
    @familytwinandkabukivibes93922 жыл бұрын

    Simone my excitement to share this video and the conversations! it was a real pleasure it was great Jacob joined in he keeps watching it over and over! I do too! We love it amazing work you are doing creating the awareness which is so needed opening up the conversations thank you so much for thinking of me to be your first to be interviewed so much more to come! Much love to you

  • @SimSENDTalk

    @SimSENDTalk

    2 жыл бұрын

    I know we have spoken since, but just to say thank you again for this interview. You and Jacob did so well. You are an amazing mother…keep sharing and raising awareness ☺️🤗💕

  • @tutupops9546
    @tutupops95462 жыл бұрын

    Hey Teresa & Jacob 👋🏾👋🏾 it's Tutu from TSFF. Lovely to see you on Sims page

  • @alexandriacarter8495
    @alexandriacarter84952 жыл бұрын

    Fantastic vlog. So informative and a natural organic conversation. I've worked as a TA /LSA in school and loved it. Sen is so rewarding ever changing challenging it's amazing. As a TA you fight for every resource or time needed for the child) children you work with. We had lots of Outreach help from a schoos in our areal called Hatton New bridge and New Rush Hall absolutely fantastic. Working in mainstream. Progress was good I did at times with some children feel why aren't there tests that are completely adapted to all the SEND needs whatever it may be. Why are s.a.ts not geared or g.c s.e. for the matter towards our send children. It's the 21st century. Also in mainstream with some children I just felt why should this child not be able to work at there own time table not be so restricted. This is where the appreciation and admiration for Send schools is stratospheric for me. So amazing and life changing when appropriate or needed. You ladies are amazing what a beautiful family you have with Jacob and Hannah. Wonderful you are all truly blessed. 🙏🏿🙌🏾💕

  • @SimSENDTalk

    @SimSENDTalk

    2 жыл бұрын

    Thank you so much. You raised some really key points. Yes, why would some mainstream schools try and put our children in a ‘box’ that they can’t fit in?! So wonderful to hear about your positive experience. I believe you made a difference in both settings, as you care about the children. We need more people like you!

  • @carmenmatthias3573
    @carmenmatthias35732 жыл бұрын

    Absolutely amazing you both are a credit to society,we need more young people like you who is paving and opening the pathway to accept, love, support, and share your challenging experiences with other families who may be struggling to come to terms accepting the diagnosis of your child disabilities

  • @SimSENDTalk

    @SimSENDTalk

    2 жыл бұрын

    Thank you so much for your encouraging words & support….as usual, dear mother 😊💕

  • @familytwinandkabukivibes9392

    @familytwinandkabukivibes9392

    2 жыл бұрын

    This is wonderful and encouraging to read thank you

  • @rebeccaalpay2275
    @rebeccaalpay22752 жыл бұрын

    Thank you Simone, for this informational and open session. Thank you Teresa for sharing your experience and bringing awareness ❤️ wishing your family the best

  • @SimSENDTalk

    @SimSENDTalk

    2 жыл бұрын

    Thank you Beccy xx

  • @krisfoster4712
    @krisfoster47122 жыл бұрын

    Just here to watch again loved it

  • @SimSENDTalk

    @SimSENDTalk

    2 жыл бұрын

    Thank you Kris 😊🤗

  • @latoyathompson5878
    @latoyathompson58782 жыл бұрын

    😍

  • @krisfoster4712
    @krisfoster47122 жыл бұрын

    Love you both and when is my time

  • @SimSENDTalk

    @SimSENDTalk

    2 жыл бұрын

    We love you too Kris. You’re such an inspiration with raising awareness about your own disability on Instagram….and I would absolutely love to interview you.

  • @Jessinking
    @Jessinking2 жыл бұрын

    hi there. my name is jessica and i found your page searching for people who talk about being disabled some way. not sure if you knew but march is National Developmental Disabilities Awareness Month and i am an alternative disabled content creator on multiple platforms including here on youtube. i didn't know about it until i googled myself. if you are open to having someone to do a collab on your channel/content i'm avaialable and would love to work with you! have a great day.

  • @alexandriacarter8495

    @alexandriacarter8495

    2 жыл бұрын

    @Jess in king please make that happen. It's such an opener and an anxiety reliever to find channels like this for help guidance and support. Especially when you're a parent. Thank you in advance 💝

  • @SimSENDTalk

    @SimSENDTalk

    2 жыл бұрын

    Hi Jessica, thank you for your message 😊 Do you have an email address to discuss further? Thanks

  • @Jessinking

    @Jessinking

    2 жыл бұрын

    @@SimSENDTalk yes, however when i try to give it out youtube deletes the comment as spam. if you go to my channel and look at any videos description it's there as well as if you go to my channel and press the about tab.

Келесі