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.
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/