When Nico was 3 years old we spent 4 days and nights at Great Ormond Street Hospital where he underwent an extensive battery of tests, designed to get to the bottom of what was affecting him and give us a clear diagnosis. The testing had been arranged for us by Scope. They told us that knowing what was causing Nico’s problems would help us with his education and give us a good idea of what we might expect in the years to come.
We had a private room in the children’s ward and Ian and I took it in turns to sleep besides Nico on a fold-out bed provided by the hospital. During the days we wheeled Nico around the hospital, from department to department, as he went from one test to the next. He was distressed by having electrodes stuck to his head, but they showed that he didn’t have epilepsy. He enjoyed the sight and hearing tests (particularly the hearing, as it involved music) and we were told he had perfect hearing and might need glasses later on, but had good eyesight. At this point one of his eyes would “wander in” when he was tired, but they told us that this would right itself as he got older and his eye muscles became stronger.
Tests proved that his overall muscle tone was low, including his internal muscles. Ironically we were told that this was the reason why he found it almost impossible to be sick – his internal muscles just weren’t strong enough to allow him to vomit. The doctors were leaning towards a diagnosis of athetoid cerebral palsy.
One day Nico spent being examined by a group of your doctors under a senior doctor’s guidance. It was this doctor who drew our attention to the lesion on the back of Nico’s head and asked more questions about it. We told him that he was born with it bleeding – not badly, more like a graze and that at the time the midwife said he had scraped it on the inside of my pelvis. But the doctor told us that the lesion wasn’t scar tissue and that the pelvic scrape idea didn’t make sense to him. He asked us if it had grown over time and it had. He told us that he suspected that it was the outward manifestation of a similar lesion on Nico’s brain and the sign of a rare syndrome, a form of Jadassohn Syndrome, not life threatening in any way, but it would almost certainly affect Nico’s motor function considerably. He recommended that we got Nico into a programme of intensive physiotherapy in order to maximise his potential as much as possible.
The final tests were for Nico’s IQ. The results were inconclusive as the doctors explained to us that they had no definitive tests for children with profound disabilities like Nico, however based on how he had performed in the tests they said that they believed him to have an above average IQ, a level of understanding suitable to his age group and if he had help with communication, he would be able to make his wishes known and was perfectly capable of making decisions. Their actual words were “he’s a pretty sharp little character, not much gets past him does it!” He was not diagnosed as learning disabled, was not on the autistic spectrum and had no epilepsy. However, we left Great Ormond Street with a child as floppy as a rag doll, doubly incontinent, unable to sleep at night and without communication. To find out what happened next you’ll have to keep following these blogs.
We were to spend the next 15 years with paperwork that either said “athetoid cerebral palsy” or “cerebral palsy like symptoms” or “presents like athetoid cerebral palsy” and in later years the blanket label “PMLD”. Apparently the phrase “what’s in a name” no longer applies as soon as you talk about a disability and the name you are labelled with becomes extremely important.
You soon realise that the name, the diagnosis, the condition – whatever you want to call it, that you child has (I don’t actually like to use the words “suffers from” as it implies suffering and pain which is something Nico didn’t have) becomes WHO your child is. Instead of just being Nico Reed, your child becomes athetoid cerebral palsy boy and the label of his diagnosis follows you from meeting to meeting, department to department and from doctor to doctor. Soon the paperwork that comes with your child fills folder after folder, box after box and all labelled carefully with the different kinds of letters they are and almost every one of them puts the name of Nico’s “condition” next to his name and date of birth.
But in our family we resisted this robustly because we saw everything that he could do and the love we had/have for him was absolute and consuming. Nico was amazingly easy to love, not least because he loved in return.
In early June this year (though I find it hard to believe it’s only been such a short time) I wrote to Gail Hanrahan and Sara Ryan after seeing Sara’s campaign #justiceforLB unfolding on Facebook. My initial contact with Gail was through Facebook and I was very tentative at the beginning, but they both embraced me so warmly and gave me such heartfelt and wonderful support, that I got past my initial reservations and began the #justiceforNico account on Twitter. Then one of Sara’s supporters, John Williams then helped me to set up this blog (without him I’d probably still be banging my keyboard in frustration).
Many of Sara Ryan’s wonderful support team and supporters have flocked to support me too, which feels astounding and quite wonderful, but in their messages to me they talk about autism, learning disability and challenging behaviours. I know about these of course. I’ve known many young people who fall into some/all of these categories and have these names and labels…….but Nico wasn’t one of them.
Then a blog I read recently by Matthew Smith
made me think again about the issue of names and labels. Nico was very particular about what you called him. He liked to be called Nico. His loving sisters were allowed to call him Mr Ginge, Nicodemus or Fat Boy and sometimes his dad and I were allowed to use those nicknames too. His friends from Penhurst called him Mr Nico or Mr Reed and he was fine with that too. But he was very proud and very particular that you use his name when you spoke to him or about him. If you didn’t know him and called him something other than Nico he would curl his lip, furrow his brow and make you feel under no illusion that you had offended him.
Does it matter what we call these wonderful young men and women who we are fighting for? We know their names and we can call them by their names, but sometimes it’s useful to have a way of describing all the young men and women like them (I really wish I didn’t have to type that sentence – wish that there were no other young people or parents who have been through what we’ve been through and are still going through). However, in calling all of our young people by one generic name – are we simply putting yet another label on them?
It takes only one glance at any photo of Connor Sparrowhawk to see that, without doubt, this guy was a DUDE! His loving family who knew him better than anyone else in the world have the right to call him whatever they want to – because he is theirs – their son, their brother, their grandson, their friend. In allowing us, who didn’t know him, to call him by that name Sara Ryan honours us, because she is allowing us to share in the special part of their loving bond.
But now I am followed and read by people who are striving for justice and for an end to the horrendous practice of taking young people away from all they know and love and putting them into assessment and treatment units – and then refusing to let them out and back to the family that loves and needs them (and although this is bad enough, then to fail them in their care so dismally that they die).
But this isn’t Nico. This isn’t what happened to him and this isn’t his story. Nico – not learning disabled, not autistic, no challenging behaviours, but still failed by the system in the most callous and calculated way. He wasn’t a dude but he was a young man who was going to have a normal life expectancy and who loved life.
Now I’ve written this and admitted that the support we’ve received through the social media has almost exclusively been from people who are pushing hard for change for young people with LD, autism, epilepsy, challenging behaviours and assessment and treatment units – where does that leave us?
Hopefully these people will NOT desert our cause nor let our banner falter or fall because Nico Reed came with different names and labels. Maybe some new people to whom the names and labels of PMLD, cerebral palsy and other syndromes will see our banner now and come towards it.
Or maybe it’s just time that we stopped with all the names and labels.