I had a panic attack in John Lewis today

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 care for her….. so I watched, I guess hoping for some reassurance.

I’m not very stealthy so they spotted me very quickly. Embarrassed I apologised for being rude and explained my daughter has Down syndrome.

The lady with Down syndrome told me her name, Sarah (name changed) and that she is 48. She told me her mum is in her nineties so doesn’t like to shop now. She showed me the new clothes she’s chosen – a very snazzy top and pair of trousers.

She asked to see a photo of my Scarlett and said she’s very pretty.

Sarah had a companion with her who joined in the discussion but quickly the conversation turned dark.

Sarah’s companion asked if I knew my Scarlett had Ds when I was pregnant. I explained I did not test either of my babies for Ds in pregnancy, a decision I have never regretted.

She then turned away from Sarah, lowered her voice and said “Sarah’s mum didn’t know until she was born. While she loves her very much, her advice to any pregnant mother carrying “a downs” would be to abort .

She might as well have slapped me in the face. I felt my stomach flip. I composed myself and said “I feel the complete opposite to that but appreciate times were very different 40 odd years ago.”

My eyes were burning with tears, I told Sarah it was lovey to meet her and moved away.

And then I couldn’t breath. I think I had a panic attack. I couldn’t breath, I couldn’t see straight, the room was spinning and tears were streaming down my face.

I went upstairs to find Simon. I couldn’t breath and I couldn’t find him. So, in a quiet corner of John Lewis I phoned my dear dear friend – who is also mum to a little girl with Ds. At times, she’s the only person in the universe who understands me.

I explained what happened, between gasps of breath and sobs and snotty tears with people staring at me as they walked past.

My friend listened. Cried with me for a minute and then reminded me – it’s always other people. It’s never us, it’s never our kids, it’s never people with Down syndrome. It’s ALWAYS other people with their shitty words and nasty views that do this to us.

So why say that. Why say that in front of her? Why say that to me? Why, when Sarah and I were having a perfectly lovely conversation tell me that her mother wishes she had aborted her. IN FRONT OF HER. To me, the mother a child with Down syndrome.

This pattern has been repeated over and over and over again for the last eight years and I am so unbelievably tired of it.

At 9 months old, at a routine appointment Scarlett’s Cardiologist informed me that if I chose to have more children I should “get tested early as abortions are easier in early pregnancy. Lovely as she is, you wouldn’t want another like her.” I cried for a week after that appointment.

Throughout my pregnancy with Katie I was repeatedly pushed towards testing for Down syndrome by practitioners despite repeatedly declining and asking them not to ask me again. My maternity care was compromised and the joy of my pregnancy tainted.

I’ve had family members, friends, strangers in the street, people in the doctors waiting room. Over and over this idea that Scarlett should not be here, that she’s a mistake.

At a recent orthotics appointment the term “Downsie feet” was used. This is far from the first time this type of language has been used by healthcare practitioners when talking to us.

A few years ago at a toddler dance class one of the other mums brought her parents in law to watch. I was heavily pregnant with Katie and had a lovely session dancing and laughing with Scarlett. After the session I learned the in-laws, once I was out of ear shot, said “what a shame, I hope the new baby’s not got it”. All these years later I remember how that made me feel. And asking “what did they see that was so terrible? I thought we were just dancing”.

Why. Why? Why do people do this to us? Would they talk to other people like this? Are they this rude, this vile to everyone they meet or do they genuinely view Scarlett and me as so unworthy of even basic common decency.

And the thing of it is. It’s all bollocks. None of this in anyway reflects our life. This view that people have, it’s not us. Scarlett’s bloody brilliant. She’s funny and bright and kind and I love being her mummy. She’s easy, she lives in the moment, she never holds a grudge, is never unkind (unless chocolate is involved, then she’ll fight you to the death). Our day to day life is great, we’re happy. But it breaks my heart that she will have to hear this, from strangers, her whole life.

I’m glad I met Sarah today. She was nice and she made me smile. But the truth is I’ve learned nothing about what Scarlett’s life will be like as an adult by talking to a stranger who happens to have the same number of chromosomes as her. Because that’s the only thing Sarah and Scarlett have in common. So maybe this whole episode has taught me something, even if it’s just to not stare at strangers in department stores.

Eye tests and glasses

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 in vision in children with Down syndrome based at Cardiff University – Maggie Woodhouse (OBE) – and got Scarlett on her six month waiting list. Maggie has strong links with the Down syndrome Association and works tirelessly in research as well as proving support to other professionals and families.

We travelled to Cardiff, our whole family staying in a local Airbnb to have Scarlett assessed by Maggie. We were right to do so, we left with a new diagnosis of Cerebral Visual Impairment (CVI) and a new glasses prescription. Maggie also explained that even with glasses, Scarlett’s vision is like looking through a misty lens. Glasses would never fully correct her vision and so she should be treated as “visually impaired” with access to support such as pens instead of pencils to write with and large print to read. This was new information to us, none of Scarlett’s existing professionals had made us aware of this.

Maggie’s diagnosis opened the door to the local Sensory Support Team. As Scarlett also wears a hearing aid she was classified as “Deaf-Blind”, or my preferred description of having “Multi-Sensory Impairments”.

Maggie suggested that as our hospital eye clinic was not working for us – partly due to staffing issues and partly because the busy environment was stressful for Scarlett- that we could instead use a local optician with them linking in to Maggie for support if needed.

Excitedly we informed our Multi-Sensory support worker that we had a plan for Scarlett’s ongoing eye care but were told that if we moved Scarlett away from the hospital eye clinic we would not be allowed to continue to access support from the Sensory Support Team. Dammit.

We persevered for a while longer with the hospital eye clinic but things went from bad to worse. Their staffing issues worsened and we simply couldn’t get an appointment anymore. One day, out of pure frustration I drove to the hospital and staged a “sit in” at the front desk of the eye clinic refusing to move until they gave Scarlett an appointment. They claimed they’d lost her records and that someone would call me back that day. They didn’t.

Our next move was to transfer to another hospital. Further away, less convenient but our hope was that Scarlett could access the eye care she needed without losing the much needed support from the Sensory Team. We had one appointment which was brilliant but then COVID hit and we had to wait while appointments were delayed and postponed.

Our first appointment in 2021 at the ‘new’ hospital eye clinic was disastrous. They wanted to put eye drops into Scarlett’s eyes to dilate her pupils to allow them to assess what glasses prescription she needs. She sat on my knee and as they put the drops in her first eye she screamed “Mummy NO, Mummy NO!!!”. She fought and clung to me, shaking and terrified. I tried to hold her firm so drops could be put in her other eye but she was terrified, fighting and screaming “scared Mummy! No Mummy! No!”. I’ve rarely heard Scarlett scream with such terror like that, I can only think of one other time she was in such distress – when she was two years old having the chest tubes removed after her open heart surgery. Only now she’s older she can express herself a little verbally “Scared Mummy. Scared”.

I asked them to stop. I asked if it was really necessary to do the drops and was told it was. It’s worth mentioning at this point that Maggie Woodhouse did not use drops in Cardiff. I was told another member of staff would be brought in so that the three of us could physically restrain Scarlett and force drops into her eyes.

I said no. I asked again if it was necessary. I was told it was. I asked what alternatives there are to restraining and terrifying my child. I was told I could take drops home, make another appointment and put them in myself before coming in again.

We left. It’s one thing holding your 2/3/4 year old in your arms for eye drops, it’s a very different thing to have three adults physically restraining your nearly 8 year old and she begs you to stop. So I said no and we left. I took the drops but as we drove home, Scarlett asleep in the back with emotional exhaustion I knew we would not be putting drops in her eyes again. We need to protect her quality of life now, her happiness, she is having a wonderful childhood – it’s not going to be marred by unnecessary medical procedures. We need hospital appointments to be pleasant to enable her to be confident to attend future appointments. We need our child to not be terrified and restrained and assaulted in order to make a healthcare professional’s job a bit easier.

I spent the afternoon sending emails, making phonecalls, reaching out to the SEND community in parent forums & within my own friendship groups. I couldn’t believe this was the only option. Were people really physically restraining their 10, 15, 20 year olds for eye tests? For how many years? How many adults would be required to restrain 25 year old Scarlett? What sort of toll would that take on her mental health or her understanding of personal boundaries.

If we teach her from an early age that she can and will be be physically forced to do things she doesn’t want to do now, how the hell will we then teach her to say no to unwanted physical advances when she older? How will she know which forced physical restraints are ok and which are not (clue: NONE are ok).

As I researched and talked I learned that parents were driving enormous distances to eyecare specialists who could do the eye tests without the use of drops. These drops are not necessary, they are a convenience for the professionals. A little time, a little training and in most cases there is no need … but did I really have to drive to Cardiff or Birmingham every 6-12 months for a simple eye test for Scarlett if I wasn’t willing to physically restrain and traumatise her? I would do it if that was the only option but the impact on her missed schooling as well as my missed work days seemed unfair.

I was given a list of Opticians trained and recommended by Maggie Woodhouse from a brilliant friend (SN network at it’s best). One was just 10 minute down the road from us! Amazing! But this would mean we would lose the support from the Sensory Support Team. Which was more important? Proper eye care or Sensory Support – and why the hell were we having to chose???

During our time at Mainstream school (another blog for another day) the Sensory Support Team were invaluable, often feeling like the only ones on our side or advocating for Scarlett. But now she is in a wonderful Specialist School who don’t need as much input from external teams, so while the Sensory Support Team is important if I had to chose (again, why should we have to chose), I chose the eye care that will cause less short and long term trauma to my child.

Of the many emails I sent out asking for help, was our current contact at the Sensory Support Team who I built up a good relationship with during covid- she was one of the very few people who reached out to us during the first terrifying lockdown. She phoned me almost immediately, horrified by our experience and the idea of Scarlett being physically restrained. She reversed the previous decision that we could not access her Team support if we moved away from hospital eye care (made by a different member of staff three years ago) and committed to fully supporting us whatever choices we made for Scarlett’s ongoing eye care. Result.

We now have an appointment booked at an optician just 10 minutes down the road for next week. They tell me they rarely need to use eyedrops, have loads of experience supporting children with SEND and have links with the great Maggie Woodhouse. It’s a small, quiet and calm environment.. Scarlett will need to take no more than an hour out of her school day and they can fit her for new glasses right there and then.

It’s been a four year journey to get to this point. With hindsight I wish I hadn’t accepted what the Sensory Support Worker had said about not being allowed access if we change our eye care. I should have phoned her boss and argued, I should have stamped my feet and demanded better… but at the time we were having such a tough time with the mainstream school I didn’t feel I could rock any more boats.

I wish someone, ANYONE, could have told me that we could get the drop free eye tests we need from just down the road. I wish that someone could have guided us through this. I wish that someone could now please go into the hospital eye clinics and train the staff on how to support children with Down syndrome and other learning disabilities – because from what I am hearing now this is happening in hospital eye clinics up and down the country with parents feeling powerless to advocate for their children.

So I’ve written this blog.

Because if there is someone else out there feeling sick at the thought of physically pinning their screaming child down to have drops forced into their eyes for a simple eye test I want you to know there are other options.

YOU can decide how and from where your child receives eye care. And you do NOT have to lose any of your other support teams to access this.

As Maggie Woodhouse explains, eye drops are used to paralyse the focusing mechanism within the eye. Children with DS easily relax their focusing, so drops are usually unnecessary, and that makes children with DS so much easier to test than typical children. You do NOT need to accept this for your child.

Of course now that we have Scarlett sorted, the next job is to change the working practices at the hospitals because if this has happened to us it’s happening to hundreds if not thousands of other kids. Even if drops are necessary, and for some children they may be, physically restraining people with learning disabilities is not the answer. Practitioners have a responsibility to find a way to deliver the care, to work with patients and parents. The use of visual aids, social stories, changes to equipment or the environment can help. Support from a learning disability nurse or play therapist can be found, the answer is never to pin down, physically force or assault patients. Ever.

Some resources …

Down syndrome association https://www.downs-syndrome.org.uk/about-downs-syndrome/health-and-wellbeing/eyes/

Maggie Woodhouse https://www.cardiff.ac.uk/people/view/38236-woodhouse-margaret

Tomato glasses https://www.tomatoglassesuk.com/

CVI Society /https://cvisociety.org.uk/

Is it our turn yet?

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 wake of George Floyds murder the world grieved. We changed our social media profile pictures, we discussed and debated social attitudes. Businesses big and small spoke out, using their platform to stand up against oppression. We held mass protests across the world.

While those responsible for George Floyds death were rightly convicted this week with the President himself speaking out, Ethans killers returned to their duties after a short time of fully paid leave.

It might be worth mentioning at this point that Ethan had Down syndrome

The sad fact is we are decades away from the sort of public support anti racism or women’s rights issues have experienced in recent months. As a society we simply do not see disabled people, and in particular learning disabled people, as having equal value.

Our disdain for those with learning disabilities is woven into almost every aspect of our culture. From pregnant women being pressured to to aborting their babies with disabilities to the rising rates of disability hate crime. We are in the midst of SEND education national crisis, unemployment rates amongst those with intellectual disabilities are sky high and nobody bats an eyelid.

While we easily recognise racist or homophobic language, ablist language is acceptable day to day chat. We call bad drivers on the road “idiots”, words like “retard” and “spaz” are thrown around as if they have no meaning, we joke that we’re “monging out” or imitate people with an LD (tongue pushing out lower lip with a “durrr” noise & flapping hands) to mock our friends . We understand that the best way to insult someone is to mock their perceived lack of intellect – what sort of society values IQ points over kindness or integrity?

The only people to really stand up and make noise about this are disabled people themselves and their families. And when we do we are told to pipe down, to be less angry, that we should be more understanding, that they didn’t mean it “that way”.

But with the knowledge that my child’s life expectancy is 20 years less than her sister’s. Not because of any medical reasons, simply because she will face barriers and discrimination in accessing education, healthcare, employment and living accommodation I don’t really feel like piping down.

I want to scream at the top of my voice WHEN IS IT OUR TURN? WHEN WILL YOU START SPEAKING UP FOR US.

When will you decide my girls life also has value?

Why I no longer care if you call my girl a “Downs girl”

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.

When Scarlett was just a couple of weeks old a midwife phoned me “I hear it’s a Downs baby” she said. I was devastated, most new mums receive “congratulations! It’s a girl”, but to this midwife “it” was simply “a Downs baby”. From her tone I knew she considered that a tragedy, there were no congratulations for me.

This experience and many more like it drove me to loudly demand that person first language should be used at all times and every single time my daughter was referred to as “Downs baby” or a “Downs girl” my heart broke.

Identity First Language

The Autistic community generally prefer the use of identity first language. That is to say a person “is autistic” or to refer to “autistic people”.

I tread carefully as I discuss this as I am not autistic but autistic friends or parents of autistic children often say that they do not consider autism to be separate to them, that it’s not just something they “have”, rather it’s an important part of their identity that they feel proud of.

As time goes on I feel increasingly aligned to this way of thinking. I don’t see Down syndrome as something that Scarlett simply “has” like a broken leg or like a hair or eye colour. It’s deeper than that. Down syndrome is in every single cell of her body. It is woven into everything from how she communicates to how she looks to how she understands the world. Take the Down syndrome away and I’d have a different child. And I most certainly would not want a different child.

Why the difference in outlook

The journey begins differently for people with Ds compared to autistic people.

If your baby has Down syndrome you learn this either before your baby is born or shortly after birth. People often chose to terminate their babies with Down syndrome and the response to the diagnosis either pre or post birth from the medical profession is on the whole negative.

As new parents we are thrown into this world and immediately forced to defends our child’s very existence. We are asked questions such as “didn’t you have the test then?” and spoken to as though the birth of our baby is a sad, avoidable event. Mothers are told “I’m sorry” before they’ve even got off the delivery table.

Our babies have not yet developed their little personalities, we haven’t had a chance to get to know them yet. No wonder we feel compelled to put some separation between a diagnosis which is seen so negatively and the tiny humans we love so much.

An autism diagnosis happens a little differently, a year or two after birth, later in childhood or even as adults. Sometimes more gradually, sometimes it’s a shock and sometimes it has to be fought for and comes as a relief to finally have it recognised. There isn’t a prenatal test for autism. Yet.

I’m in no way saying one experience is easier than the other, both journeys come with the most wonderful highs and challenges that only those in the SEND community can understand. But there is a difference and I suspect that, at least partly, explains the differing views on language.

It’s also about grammar

A key point which I think is often overlooked in this seemingly never ending debate between person first and identity first language is grammar.

While the autistic community prefer “autistic person”, the phrase “autism person” would never be used.

We would never say “autism girl” or that someone “IS autism” in the way people sometimes say “Down syndrome person” or that someone “IS Downs”

Autism is a noun.

Autistic is the adjective to that noun.

Down syndrome is a noun.

There is no adjective for Down syndrome.

If there was an acceptable adjective for Down syndrome, I can’t help thinking much of this would at least be a little easier.

It’s a personal choice, try to respect it

While my feelings about person first vs identity first has shifted over time along with how I understand my daughters diagnosis and how it shapes her & us as a family one view has remained constant throughout:

If you know a person’s name, use it. If you don’t know it, ask.

If you are referring to a person and need to describe them try “the girl in the red dress” or “the girl that goes to dance class” rather than always defining by their disability and nothing else. You know, a bit like you do for other people.

And if you are a medical professional or need to refer to particular groups of people with the same or similar diagnosis, take some time to learn what their preference it.

For me, I no longer waste emotional energy on this. I’m a busy mum of two very active girls and, honestly, I don’t have the time to spend arguing with strangers about the language they chose to use.

These days If you call my girl “a downs girl” I roll my eyes, chuckle at your lack of good grammar and get on with my day and I feel a hell of a lot better for it.

Why are parents of disabled children being refused the COVID vaccine?

(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 healthcare, education and social care on top of the medical appointments, therapy sessions, school meetings and endless form filling almost a full time job in itself. Add to that a lack of suitable available after school childcare and no wonder so many parents lose their careers and have no choice but to rely on meager financial supports such as Carers Allowance at just £67.25 per week.

But this assumption of dependence on benefits is never made with kindness or understanding. These barriers to employment are rarely acknowledged, and judgement often sits side by side with the belief that many are claiming when they are not entitled despite disability benefit fraud being less than 1% of total claims.

But what does this have to do with the COVID vaccine?

COVID Vaccination Priority Group 6 includes Carers. The exact wording in the COVID bible also know as the Green Book, Chapter 14 is as follows:

“Those who are eligible for a carer’s allowance, or those who are the sole or primary carer of an elderly or disabled person who is at increased risk of COVID-19 mortality and therefore clinically vulnerable”

Read that again. It does not say that one must be in receipt of carers allowance. It says that one must be eligible for carers allowance OR be a sole or primary carer.

Parent/ carers of disabled children fall into the “primary” carer category. BOTH parents. They do not need to be in receipt of the £67.25 carers allowance.

The COVID vaccine is not means tested

Both Simon and I were refused the vaccine by our GP. We were told that as we do not receive carers allowance we are not eligible… and I am hearing this same story from our community over and over and over again. Parents having to fight, as we did, for the vaccine which they are entitled to under Priority Group 6.

My husband and I are extraordinarily privileged. We own our own business meaning we have the luxury of being able to chose our own hours and work around our children’s needs. We can take time off to attend medical appointments and school meetings. We haven’t had to sacrifice our careers or our financial security in order to support our child. We are not eligible for the Carers Allowance because we each earn over the measly £128 per week threshold. But we are still Primary Carers of our disabled daughter and so still eligible to receive the vaccine in Priory Group 6.

The COVID vaccine is not means tested, all primary carers are entitled to it regardless of their income. And that includes BOTH parents.

Just another battle to fight

I have heard reports of outrageous responses from GP staff when approached by parent carers who do not receive Carers Allowance:

“I hope you’re not just trying to get the vaccine early”

“Only the mother is eligible”

“You’re not entitled, you have a job”

Some healthcare professionals have tried to excuse this behavior as specific to the pandemic. Stating the guidelines are confusing (reads pretty clear to me) or that we should cut the GPs some slack as this is a new thing they are dealing with.

But to those of us in the SEND community this isn’t new. This isn’t unique to the pandemic. This is simply another fight, another humiliation, another opportunity for society to point the finger and accuse us of abusing the system, expecting special treatment or wanting free stuff.

The idea that the vaccine should only be given to those carers in receipt of benefits and that anyone not claiming benefits is “just trying to get the vaccine early” plays straight into the idea that all disabled people and their families are low income, benefit claimants. Society does not expect or want those from the SEND community to thrive or to have equal status to themselves and so anyone who does not fit into this narrow, distorted view of how our lives should be is met with suspicion and hostility.

Its been a long year

Disabled children and their families have been one of the hardest hit groups during the pandemic. With families seeing almost all support they rely on disappear. With reduced access to crucial therapies, medical support and education as well as respite care or even just their natural support system from family and friends restricted.

Its been a traumatic time for everyone, but some within the SEND community have been pushed to beyond breaking point. To finally reach what feels like might be the home stretch only to face yet another battle, yet another barrier, yet another refusal of support is beyond cruel.

So, how do you get the GP to provide you with the vaccine if you do not receive carers allowance?

OK, so now I’ve had my rant, here’s the important information:

1 You must contact your GP and request that if you are not already, you are marked as a Carer on their records

2 Request the vaccine as sole or primary carer

3 If you are refused report to your local CCG who will support you. Our CCG contacted our surgery on our behalf and made the appointments for us

4 If you are still not getting anywhere telephone 119 and they will book you an appointment. The downside is you may have to travel out of your area

5 Submit a formal written complaint copying your CCG. This is important and will help to ensure other parent carers are treated fairly

A couple of useful links:

Find your CCG:

https://www.nhs.uk/Service-Search/other-services/Clinical%20Commissioning%20Group/LocationSearch/1

The COVID Greenbook chapter 14a:

https://www.nhs.uk/Service-Search/other-services/Clinical%20Commissioning%20Group/LocationSearch/1

Children in Need

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 there if we ever do.  I’m glad to know there are so many kind hearted people willing to make a donation.

So why does it make me feel so uncomfortable?

As an activist and campaigner I often feel at war with public perception.  I work hard to dispel so many of the myths and misconceptions that surround individuals with Down syndrome.  I push back hard at a medical profession who often present a diagnosis of Down syndrome as the worst possible outcome.  I strive for families to be provided with balanced up to date information instead of being pushed toward a termination.

As a mother I cringe at the thought that anyone may look at my family and feel pity.  That they may look at my daughter and think “what a shame”.    I rarely share the tough days with anyone outside my trusted inner circle because I fear they might think it might have been better if she wasn’t here.  Having kids is bloody hard work, with or without Down syndrome.  But while most mums get to have a moan about how tough it all is, I feel compelled to stay silent.

So why does Children in Need day make me feel so uncomfortable?

It’s very simple.  To get the donations you have to tell a few sob stories.  The British public won’t part with their hard earned cash for nothing.  In return they expect an evenings entertainment. They want to sit on their sofa with a cuppa in hand feeling sorry for all the poor disadvantaged children.  They want moving background music and some inspirational stories.  They want to feel good about themselves for picking up the phone and making that donation.  They want to feel lucky it’s someone else and not them.

Next week Children in Need will put us back a step.  It will put firmly into the publics mind that children with disabilities are “disadvantaged” and rely on support from charities.  They will use the faces of children with Down syndrome to promote the cause and they will further the fear that many feel about the condition.

So I ask this.  Make a donation.  This is a good cause and an over stretched NHS and welfare service means that more and more families are relying on charities.

So make a donation, as much as you can afford.  But do it with love and not pity.  Do it knowing these families, families like mine love their children just as much as you love yours.  Do it knowing that I wouldn’t change my girl for the world.  

Juggling

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 to assess her language skills, emails from her Occupational Therapist, a text message from her Hearing Support specialist.  New appointment letters for next month to enter into my diary and file away…… I’ll need to start a new folder, the current one is full but I haven’t the time to buy a new one.  Or to organise the various sections:  heart, hearing, ENT, speech, paediatrics, physio and so on.

Meanwhile the house work piles up…. I haven’t seen my iron in months (do we have one?)…. it’ll be pizza tonight (again) and as soon as the kids are in bed I’ll turn on my laptop on and try to squeeze a days worth of client work into one evening.

This is the side of parenting a child with additional needs that goes unseen.  When people see Scarlett they often assume my life is hard…. that she is hard … that her diagnosis of Down syndrome is a tragedy that I wish hadn’t happened.  They think she is less.  Imperfect.

But Scarlett isn’t the hard bit… in fact as a human being she is pretty bloomin awesome.  She’s kind and funny and, for a three year old, surprisingly reasonable.  She goes to bed when asked, usually eats all her dinner & always has a cuddle for her Mummy.  As kids go, I definitely got a diamond & I wouldn’t change a single hair on her head.

Talking to friends, I’ve learned that most Mums with young families are overstretched.  Feel like they don’t have enough hours in the day, days in the week.  Or enough time to themselves.   And I’m not for a moment suggesting that their struggles are not real or that I have it harder…. but there are some extras.  Some additional tasks I must find additional time for when there are not additional hours in the day available.  And I don’t see that changing any time soon.

Noises

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 bit like Chewbacca from Star Wars.  Sometimes the noises are like she’s singing out of tune or telling me off.

Ive never been particularly aware of it before, she’s always been a noisy kid.  As baby she’d shout, then she babbled, as she’s got older the noises she makes have changed and progressed.  That’s just what Scarlett does.  That’s what she sounds like. I love the sound of her voice.

But today, with a sudden jolt I realised that most 3 year olds don’t make these noises.  That her shouts were causing people to look.  And what they were seeing was a child with a disability…. because people with learning disabilities often do make these unusual noises.   And people stare at them.  They were staring at us.

As I write this I’m not even sure I’ll publish it… I’m not sure how I feel so I’m not sure how to end the post.  I’m not upset.  I’m not offended that people were looking and I certainly won’t be trying to make Scarlett stop doing it.  I like her noises and so does she.

But it did make me feel singled out.    Different.  Were people looking at us with pity? Did they want her to be quiet? Did they expect me to quieten her?  Were they just curious as to why she shouts? Did they feel unable to approach us? Could they see my little girl or did they just see Down syndrome?

Sensory processing

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 pressure on them feels unbearable.  I love to be in a group of people but I find a noisy crowd overwhelming, especially if there is also loud music or confusion.  But I love to listen to loud music and sing at the top of my voice when no one can hear me.

Katie likes me to hold her in my arms and spin round and round and round.  She likes to run her fingers over rough surfaces but doesn’t like the touch of scrambled eggs.  Hollie doesn’t like loud noises and covers her ears when there is loud music or fireworks.  And Simon will always feel better at the end of a stressful day with a shoulder rub.

We are all sensory beings.  We all use our senses to understand the world around us and our place in it.  We all need sensory input; sounds, smells, taste, touch and sight.  Some of that sensory input will make us feel good and we’ll seek it out.  Some will make us feel bad and we’ll do our best to avoid it.

Scarlett has Sensory Processing Disorder (SPD).  This means that the way her body and mind understands sensory input can sometimes be a little different to most people.

Scarlett likes to have pressure on her face and head, she feels that she needs this sensory input and will sometimes try to deliberately bump heads in order to get the feeling.  To keep her from hurting herself or anyone else we find better ways of providing her with that feeling.  Sometimes we press our chins together, it makes us laugh and feels good.  Sometimes I squish Scarlett’s head using the palms of my hands as a sort of massage – never hard enough to hurt her, just firm enough for her to get the feeling she needs.

Sometimes she needs a bit more, a full body squish.  We lie on the floor and I wrap my arms and sometimes my legs around her tight and we have a little wrestle and a cuddle and it sort of re-sets her,  calms her down.  In the same way Simon’s shoulder rubs do for him.  I think this need for pressure on her body is why she likes to cuddle so much.

I also think this is why she finds bath time so challenging.  We have to close the windows so the neighbours can’t hear her screaming and it can be very upsetting for all of us.  I think that for someone who needs a lot of pressure on her body, being naked and so not even having the feeling of clothes while in a large container with only water lightly sloshing round is very uncomfortable.  I often bath with her, I hold her tight while I wash her and that seems to help.

Scarlett likes to make a noise in her throat which sounds a bit like Chewbacca from Star Wars.  It can be quite loud and if she does this in public people sometimes stare at us.  I’m still learning what Sensory Processing means for Scarlett but as best as I can tell she is seeking that feeling in her throat and I think it settles her if she is feeling a little overwhelmed.  We try to distract her by encouraging her to make different noises “mamama” “babababa” but we never try to make her stop because this is something that she feels she needs.

Sensory overload can make it difficult for Scarlett to enjoy or join in at a party.  She has been invited to her friends birthday disco party in a couple of weeks.  There will be loud music and lots of children running around.  There will be sounds, sights, tastes, smells and touches.  There will probably be games that she doesn’t understand.  There are lots of ways I will help Scarlett cope with this – we will have body and head squishes before we go, I will stay close to her when we first arrive so that she feels secure and I will remove her hearing aid so the noise isn’t too overwhelming.  Sometimes she dives straight into situations like this and I’m left wondering what I was worried about.  Sometimes she needs lots of support.

I’m still learning about this, its a big and interesting subject.  No two people are impacted by their sensory experiences in the same way and different strategies work for different kids… but understanding is an important step and this is why I thought I’d share a little of our experience.

where do they all come from?

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 it was for me to take the higher ground. It didn’t matter that I was already having a difficult time in my personal life (I had just had two consecutive miscarriages), the only thing that mattered was her feelings. The person who made the joke.
It was my fault. I was to blame.

A mutual friend quickly followed; how could I have behaved so badly? How dare I treat our friend so unkindly, I should have understood she didn’t mean it “that way”, I should have handled it better. It was my fault. I was to blame.

This has happened several times over the last few years, each time the same pattern is followed. Someone makes an unkind, thoughtless or downright ridiculous remark about disability and I have a choice of whether to say nothing and swallow it down or speak up.

If I speak up it is the end of the friendship no matter how I handle it. Each and every time I am to blame because I have misunderstood, been too sensitive and not handled it the right way.

But there is no right way to handle it. If a derogatory comment is made in public and I challenge it there and then I am to blame because I have caused embarrassment to the person who made the remark – because remember, it’s me who has misunderstood.

And if I challenge in private, I am still to blame because, you know, I have misunderstood and they disappear from my life (& quietly take their friends with them).

I’ve thought a lot about why this happens.

Blame is a key feature of disability discrimination, I encounter it regularly but feel like it’s something that isn’t very often discussed.

After I took part in Sally Phillips documentary last year the feedback from certain Daily Mail readers was that my children should not be entitled to access NHS services because I chose not to have prenatal testing. It was my fault Scarlett was here, so we should not have the same rights and entitlements as everyone else.

I have been asked by complete strangers “didn’t you have the test then?”. A very different question than “did you have the test?” with a clear suggestion that if I had Scarlett wouldn’t be here. It’s my fault. I am to blame.

Remarks made in every day conversation can range from very clear discriminatory language such words like “retard” or “mong”.

Sometimes people will mock others, suggesting stupidity by imitating a person with a learning disability by flapping their arms & pushing their tongue under their bottom lip. It’s funny, right?

Sometimes it’s more subtle. Prejudice disguised within a compliment. I am often informed how loving or always happy “they” are. At first this sounds like a nice thing to say. But the “they” strips my daughter of her individuality and the always happy or loving creates the impression of a person who does not feel the same range of emotions as you and I. It dehumanises her.

Recently, during a conversation about a work program for young adults with learning disabilities, I was told how amazing it was … but was asked “where do they all come from?” … “I don’t know where they all come from!”…. Perhaps I should have responded “their homes”, but in these situations my brain swirls around as I try to make sense of what is being said and I miss the moment. Instead I went home and cried.

For three years I have tried to find the correct way to deal with these interactions. Should I say nothing, let it pass, ignore the sick feeling in my stomach and the knowledge that I have let my daughter down?

Or say something, knowing that however gently I approach the matter, it will end the same – that it will be me who is deemed to be In the wrong, at fault. To blame.

But I am beginning to realise this is not my responsibility. It is not for me to learn how to manage your prejudices. My reaction, how I chose to respond, even if that response is to kick and scream and cry, is irrelevant because if you didn’t hold these beliefs I wouldn’t need to respond at all.

It takes courage to self reflect and effort to question your own views. And it is not my job to guide you through you this, it is yours. To simply blame me for misunderstanding you is lazy. Its the easy option, it is a quick & simple way of enabling yourself to continue through life without putting any effort in to considering how your view of the world could improve. This is your responsibility, not mine. I will gladly provide you with reading material or answer questions if you ask but, and I need to be very clear on this, this is on you.

As time goes on many parents of children with additional needs find that their social circle is increasingly and even exclusively other parents of children with additional needs. I swore this wouldn’t be the case for me, that we would stand our ground in the mainstream world….

But I now see why this happens. It’s easier. They get it. I don’t have to explain this stuff. And neither do they.

Over the last year I have felt my relationships shift. The children are forming friendships that Scarlett is not included in because she doesn’t understand how to participate. And I am not included in the adult friendships because I don’t get them. I can’t complain with the other mums about my toddler talking back because my toddler doesn’t talk. I find their problems silly and trivial compared to the challenges we face…… and I am always always guardedly waiting for the next insensitive remark that I have to silently swallow down. We get invited less and I make other plans.

So bit by bit my friendships in the SEN world strengthen and those in the mainstream world weaken until eventually we will disappear from your view entirely. Which I’m actually fine with, the friends I have made through Scarlett are truly spectacular.

But this is probably why, when confronted by a group of adults with learning disabilities just getting on and doing their jobs the question “where do they all come from?” is asked.