We took a day off today to do some Christmas shopping. Simon went up to the next floor in John Lewis while I stayed on the ground floor to browse the hats and scarfs. I noticed a couple of women a few feet away from me. More specifically I noticed one of them had Down syndrome. While my life is filled with other children who have Ds (and other disabilities) I rarely have the opportunity to meet an adult with Ds and so I found myself watching them. I worry about far into the future – 40 year old Scarlett. 50 year old Scarlett. I worry what will happen when we’re too old or no longer here to car ..read more

Scarlett wears glasses. Bifocals in fact. With special frames that fit her beautiful facial bone structure. You’d be forgiven for thinking that of all the things we need to juggle and worry about for Scarlett, eye tests and glasses would be pretty straight forward. You would be wrong, it’s a bloody nightmare. If you are struggling to get eye care for your child and don’t want to read through my ranty ramblings do skip to the end for a list of resources. Our journey Around three years ago we began to lose faith in our local hospital eye clinic. We heard about a specialist with expert knowledge ..read more

In 2013 Ethan Saylor died at the hands of police officers. Eye witness reports state the officers held him down, restrained him with cuffs with their knee to his neck and back until he died. Before he died Ethan called out “Mommy it hurts”. Ethans death was ruled homicide as a result of asphyxia. Ethans “crime” was that after watching a film at the cinema one afternoon he decided to watch a second showing. He didn’t understand that he had to pay for another ticket. There are many striking similarities between Ethan and George Floyds death … and one glaring difference. Public response. In the w ..read more

Ok, that’s not strictly true. I’d much prefer it if you called her by her name please. If you’re not sure what it is, ask her. What I mean is that I no longer waste enormous amounts of my own emotional energy on this. I no longer get that punched in the gut feeling when I hear it. Or at least I’m trying not to. Person First Language The Down syndrome community generally prefer the use of person first language. That is to say “a person with Down syndrome” instead of “a Down syndrome person”. The idea is to acknowledge the person before the disability, to not define the person by their diagnosis ..read more

(Before I jump on my soapbox, if you are being refused the vaccine as a carer and just want to know how to get it, skip to the end for the useful information) There is a long held public perception that disabled people and their families are generally low income benefit claimants. In many ways it’s true. According to Mencap just 17% of adults with a learning disability are in paid work and only 52% of adults with any disability are in paid work compared to 76% of adults in the general population. Additionally parents of disabled children find it difficult to work finding the constant fight for ..read more

Children in Need day is almost upon us once more.  The BBC do a wonderful job of raising lots of money for “disadvantaged children” by inviting support from the public. It’s a positive, worthy cause. So why does it make me feel so uncomfortable? Much of the money raised goes toward supporting children with disabilities.  Children like Scarlett.  The money is used to provide equipment, services and support for families.  And of course I’m delighted that help is available.  We haven’t needed to access support from a charity yet, but I’m glad to know that safety net is th ..read more

I finished work at 10.30 last night.  I expect it will be the same again tonight. I’ve spent half of today in a hospital waiting room for Scarlett’s eye clinic appointment.  This is the fourth medical appointment we have attended this month.  I have also attended a two hour “team around the child” meeting,  a 45 minutes preschool review meeting, two visits to the optician for replacement glasses after Scarlett snapped the arm off. I have a pile of “Scarlett admin” to tackle later.  Forms to fill in for her preschool attendance next academic year, speech therapy forms t ..read more

We were having a giggle in Tesco.  Scarlett sitting in the trolley mischievously hiding my shopping list behind her back and laughing like it was the funniest thing ever.  Licking the vegetables & grinning at people as we wheeled past. Half way round the isles I became aware of people looking at us.  Not with unkindness but not smiling either.  They were watching us, Scarlett. And I realised with a jolt it was the noises Scarlett was making.  She shouts a lot.  Not words, she hasn’t learned to talk yet, but loud sudden sounds.  One of her noises sounds a ..read more

When I get into bed at night I like wrap the duvet tight around and under me, curl up into a ball and rhythmically rub my feet together.  It helps me to feel safe, relax and unwind before drifting off to sleep.  I love the smell of Jasmine because it reminds me of childhood holidays and I hate the sound of polystyrene breaking.  The feel of wet cling film makes me shudder as does the texture of kidney beans in my mouth.  I love to have my feet rubbed, and my hair brushed and my nose stroked but I have very sensitive thighs and even the tiniest amount of ..read more

A couple of years ago a friend made a “joke” on social media featuring the residents of a mental health Hospital including derogatory phrases such as “Window Licker”. I took exception, I spoke out and the backlash I received made my head spin. You see the focus was quickly shifted away from the “joke” and on to my own behaviour. Immediately I was accused of misunderstanding, being too sensitive and reacting in the wrong way. I should have realised that my friend didn’t mean it “that way” and I should have handled the situation better because her feelings were far more important than my own and ..read more