My godson has duchenne muscular dystrophy and was granted a wish to ride the gondola’s in Venice last year.Make a wish is for terminally ill children.Her son may have life limiting conditions but he is thriving right now.Yes he vomits.
I follow a wonderful mother who’s daughter has epilepsy,she often has over a hundred seizures a day.She has never nor would she ever post her in those moments of distress,it’s fundamentally wrong to share online to thousands your child being sick,she said she often deletes Instagrambullshit
Duchenne is heart breaking. I work with students with disabilities and a lot of the boys have duchenne.My godson has duchenne muscular dystrophy and was granted a wish to ride the gondola’s in Venice last year.
oh it’s awfulDuchenne is heart breaking. I work with students with disabilities and a lot of the boys have duchenne.
oh it’s awfulbreaks my heart to see him every time and see the decline in him and we’ve known since he was 4. I’ll never forget the phone call from his mum that day... I know JaXon has disabilities and needs a lot of care andsupport but i just cannot understand why she doesn’t get excited about the time she does have and how well he does. She doesn’t know how good she has it considering the position he and she are in.
whilst it is an interesting read and way of looking at it, personally I can’t completely agree with her POVPlease look up nina_tame and her newest highlight. Very interesting read.
I would imagine she’s a nightmare parent to be honest, probably thinks she knows better then every doctor and nurse in the hospital. She comes across quite articulate and I imagine she has an answer for everything. I think she even fools herself as well as her followers. I would be very surprised if professionals had never raised safeguarding concerns.Do you think she admits that she’s missing feeds or cutting them down to the doctors? Because surely it would raise concerns with regards to safeguarding. I know she throws around her nurse status a lot but adult nursing is very different to child nursing. How she can openly defy experienced healthcare professionals is just shocking.
Just read it myself and came on here to say WOW!Jesus her latest postYou can tell she’s trying to bag some sympathy from parents who have no clue about SEN life, because her paragraph trying to say how hard she has it is just an average week for most.
• why did she cancel the previous two physio appointments? But have time to film many adverts
• why is she looking to change his “plan” yet again
• “needs to be another name for this life” there is. It’s called being a mother.
Yes!!! I am feeling so uneasy with Nina’s band wagon jumping. As someone who followed her for around 7 yrs and knew her before she found her soapbox I have very different opinions about her.whilst it is an interesting read and way of looking at it, personally I can’t completely agree with her POV
Whilst on one hand you get parents like our Katie here who uses her sons additional needs to benefit herself, to create sympathy, post distasteful photos/ videos etc
the majority of parents who share their child’s journey are doing so to connect and learn from others going through similar. To find support, advice from others who have been there before, find those who will celebrate milestones with them when they don’t fit the expected timeline. Milestones which your average person wouldn’t even know about.
nina openly says she feels judgment towards able bodied parents, and just seems like she has a bee in her bonnet. Is she just trying to find another niche? Trying to push out a “new way of looking at things” note at the end of her stories she slipped in her PayPal and mentioned she is going to be doing her “first payed advert” so please support me blah blah blah.
as another account with a large following this can also be throwing unwanted judgment to the SEN community, whilst already facing the shit show Katie has created.
99% of us are just looking for others who can be a friend in an already lonely new world.
@Tomtom @Sendparent im not a SEND mum but basically I read her post and thought- um you’ve just described most mums (dads) weeks. I’m a single parent and I have all those things going on- oh and 2 jobs!Just read it myself and came on here to say WOW!I need a coffee before I even work out how to say what I'm thinking in a polite manner. Is she for real?
I know comparing medical diagnoses is really rubbish but I think we all feel the same,there are thousands and thousands of families with kids who require FAR more care,surgical intervention,treatment,manual lifting-who sadly never make the progress her son is making,his speech,movement,interaction and learning have been amazing in the past year.Many of those families don’t have any carers whatsoever that’s NEVER able to have a Kaytee style 4xweekly 12 hour slumber or weekly manicures,lip filler,botox,eye lashes,£600 micro bladed eyebrows,luxury 5 star weekends abroad,michelin star restaurants in Paris,the most expensive car on motorbility or even just a coffee in costa on their own!oh it’s awfulbreaks my heart to see him every time and see the decline in him and we’ve known since he was 4. I’ll never forget the phone call from his mum that day... I know JaXon has disabilities and needs a lot of care andsupport but i just cannot understand why she doesn’t get excited about the time she does have and how well he does. She doesn’t know how good she has it considering the position he and she are in.
I cant stand her, I thought everyone loved her though. What sen accounts has she trolledYes!!! I am feeling so uneasy with Nina’s band wagon jumping. As someone who followed her for around 7 yrs and knew her before she found her soapbox I have very different opinions about her.
She’s a troller of other SEN accounts. Someone who can cancel you out if you disagree with her or question her motives.
She’s no better than ‘K’ if you know the real her.
A mum of a little boy with Spina Bifida.I cant stand her, I thought everyone loved her though. What sen accounts has she trolled
That package will go straight in bin or given to her friends. She won't acknowledge it on her stories. It's nothing to her when she's getting gifted GHDS, expensive makeup, clothes...So here’s another gift she will receive and other deserving parents won’t. Because she’s been ‘nominated’makes me feel sick.
You need to be insta famous to be seen as a struggling parent? She gets SIXTY hours of carers. 60! Who isn’t acknowledging this?? For 3 years. And her saying she’d hoped to have them over Christmas for more hours? Why? Because no school ‘childcare’? And you have to parent him??
A mum of a little boy with Spina Bifida.
Who has now gone entirely from SM as a result. Nina staged a full on public shaming of said mum.
because a child that is gaining in milestones and is actually happy doesn’t ring those cash tillsoh it’s awfulbreaks my heart to see him every time and see the decline in him and we’ve known since he was 4. I’ll never forget the phone call from his mum that day... I know JaXon has disabilities and needs a lot of care andsupport but i just cannot understand why she doesn’t get excited about the time she does have and how well he does. She doesn’t know how good she has it considering the position he and she are in.
Have you seen the tiny charity Braveparents who send mental health support boxes to SEN parents on the thread? Loads of her followers nominating her and sadly like most other influencers do has not replied in the past to the charities dm! Usually no response as what they are offering is of no interest or big enough to post or bother about. Obviously Kaytee doesn’t need it as she can spend £80 ( ish) a time on private therapy on the phone! The joys of having Gofundme money raised specifically for equipment for your son!She’s missed two physio appointments ?? Really odd given all the time she has to do ads etc, also really hard to understand because it genuinely has never crossed my mind to miss physio appointments for my child unless there was an emergency
Also every single thing she’s written there is just what many sen parents are doing, it wouldn’t cross my mind to write a huge list moaning about it as it’s just life and it’s really just nothing out of the ordinary for me, some people are arranging ballet lessons etc for their kids, I’m just phoning specialists, but it’s just the way life is, and I won’t moan about it as I adore my children and it’s just what they need
I have never ever seen an influencer actually talk through and explain how to boost engagement before,obviously she needs the money as it’s meant she can buy her son books from Tesco’s nowbecause a child that is gaining in milestones and is actually happy doesn’t ring those cash tills
I can’t believe she is actually asking people to like her posts so she gets more #ad “work”
I was so close to writing ‘It’s called being a Mother’Jesus her latest postYou can tell she’s trying to bag some sympathy from parents who have no clue about SEN life, because her paragraph trying to say how hard she has it is just an average week for most.
• why did she cancel the previous two physio appointments? But have time to film many adverts
• why is she looking to change his “plan” yet again
• “needs to be another name for this life” there is. It’s called being a mother.
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