Helen Carlson

Mummy to one incredible little boy with life limiting complex health needs, T1D and PMLD, and two amazing little girls.

[Helen Carlson @slightlyhelen]

@JBsTwoCents That’s right, but I’m not entirely sure if that’s how everyone in the UK says it 😂 I think it’s mostly said like that but weirdly I’d say microcephaly like “micro - sephaly” 🤷‍♀️

[Helen Carlson @slightlyhelen]

@JBsTwoCents When my son was diagnosed my dad couldn’t quite remember what his condition was called but remembered how it sounded, so he tried Googling “listen carefully” 😂 Unsurprisingly he found nothing relevant! (I’m in the uk and we pronounce it with a hard “c”)

[Helen Carlson @slightlyhelen]

@JBsTwoCents Fellow liss mum here! Just popped over to see what the drama was - absolutely no surprises there, I had her blocked 😬 you’re so right - SN mums are the fiestiest! I love your summary of the drama 😂

[Helen Carlson @slightlyhelen]

@drkeithsiau My son is disabled with hypotonia and T1 diabetes. If he lies on his left during or after feeds his stomach stops emptying, causing his blood sugars to drop as his insulin kicks in. He has to be fed sitting up, or lying on his right to ensure his food passes through ok!

[Helen Carlson @slightlyhelen]

@kallmemeg Seenin have some great bits https://t.co/J7aduCVa8T. We’ve always had trouble finding appropriate gloves for our son but found some great ones last year from Seenin.

[Helen Carlson @slightlyhelen]

@ccs_nhst They’ve had a first and second dose and are now eligible for an autumn booster as they are in an at risk group. They are not however immunosupressed which is the criteria for walk in for an autumn booster.

[Helen Carlson @slightlyhelen]

@PaulMooreWW This is good advice. We’ve always been very open and direct about W with the girls and E talks very openly and matter of factly about when he might die. I can’t imagine handling it any other way!

[Helen Carlson @slightlyhelen]

@GuyWForster We were sworn to secrecy!! Biggest secret I’ve ever kept!

[Helen Carlson @slightlyhelen]

We’ve had the most amazing day!!!

[The Prince and Princess of Wales @KensingtonRoyal]

We returned to @EACH_hospices today & we’re always reminded of the inspiring resilience of the children here, the strength of their families & the unwavering support of staff members.

This #ChildrensHospiceWeek it was lovely to join some activities & spend some time with you all

[Martin Lewis @MartinSLewis]

Bloody depressing @thismorning phone-in again. So many people at crisis point regarding energy bills - including those with v high usage due to disabilities (home ventilators, oxygen concentrators, elec wheel chairs etc).

I am nearly OUT OF TOOLS to help

Govt must intervene

[Helen Carlson @slightlyhelen]

@AJWTheology I don’t agree that he sees all sides. It’s starting to feel the “cautious” are being thought of as worriers. I have an unvaxed 10 yr old who is very sick even when well, and vulnerable. This article comes across as patronising to me, when all I want to do is keep my child alive.

[Helen Carlson @slightlyhelen]

@nationaltrust @WimpoleEstateNT @CP_Consortium I’ve emailed twice now and had no reply. Please can you find out why?

[Helen Carlson @slightlyhelen]

Was really looking forward to our day out at @WimpoleEstateNT @nationaltrust. Great to see the new car park and fancy big entrance building. Absolutely devastated and angry that you chose not to install a changing places @CP_Consortium as part of this expansion. 1/2

[Helen Carlson @slightlyhelen]

@nationaltrust @WimpoleEstateNT @CP_Consortium Thank you. Will do that.

[Helen Carlson @slightlyhelen]

@RachelMuers @jennybridgman this is a good thread if you’ve not seen it!

[Helen Carlson @slightlyhelen]

Do visitors like my son, who rely on such facilities, not matter to you? I can’t sum up how let down we feel today seeing this missed opportunity.

[Henry Fraser @henryfraser0]

What non disabled people have realised during this pandemic is what it is like to live, very briefly, in the shoes of a disabled person. Lots of time at home, having to call ahead and book before you go out anywhere!, lack of spontaneity and not by choice.

This is our everyday.

[Scott Bryan @scottygb]

can the bbc put on an emergency series of strictly?

[Helen Carlson @slightlyhelen]

@PaulMooreWW I was just looking at the photos last night with the carer!!! No one does fancy dress better than you 😍