This last year there has been much talk about labelling our children. Everyone has an interest in the debate. Doctors, school, family. Who really has our children’s best interests at heart
Many parts of the health service don’t agree. Some doctors don’t believe that the label even exists, this is particularly true for Ehlers Danlos Syndrome HM (even though I am diagnosed and the condition is genetic), doctors in certain institutions still won’t say the words out loud. Some professionals won’t label them as they don’t want my children to ‘become’ their condition. (So they give them another label that means the same thing), does calling it another name change anything at all? Sometimes in appointments I get the feeling that they don’t want to make a commitment to my child by applying the label, a commitment to provide the correct level of care. With a multi systemic chronic condition like EDS or a progressive neuromuscular disorder like CMT this care is likely to be ongoing and costly. With 70% of the NHS budget taken up caring for people with long term medical conditions by committing to that diagnosis and label they would be adding more weight to that statistic. Other professionals and doctors just don’t understand the conditions at all and often don’t take the time to research, to learn or to listen. To get any sort of label in the first place is a complex and lengthy journey to embark upon. To do nothing is to not care to do too much is to be over fussy, their is a fine line and everyone has an opinion.
Here lies the problem.
Schools like labels, they are not doctors so find comfort in a nice little diagnosis written neatly at the top of a medical report, preferably NHS. All the guidance says that schools should be making provision for the symptoms a child has but in reality families need the label to prove why the symptoms are there in the first place, in order to begin to get the correct provision in place. Then we often need more evidence to prove that the condition is effecting them in a way that requires that provision at all because each condition affects each child differently.
It is a never ending, quite vicious circle for the family, that can be both tiring and overwhelming. All we want is the correct medical treatment and educational provision for our children.
School really don’t understand the strain attending countless hospital appointments often before and after school with the one aim of improving our children’s care often leaving deflated and wondering why we bother at all. Or the enthusiasm needed to stay upbeat and motivate our children every day to do their physiotherapy and occupational therapy sessions. On top of managing their pain and fatigue.
The hospitals don’t appreciate the demands at school on our children in their struggle to be normal and just how tiring it is keeping up appearances. Often they do not appreciate how hard it is for others to understand an invisible condition which all too often leaves awareness to us as their parents because we want the best for our children.
As parents we see it all, we guide the school, educate the doctors, and navigate our children through all these situations with as much humour and a smile as we can muster. We are not fighting against anyone in this pursuit but we are fighting for our children and will do with everything in our power to work with everyone to get the best for our children medically and educationally.
The aim of the SEND (Special Educational Needs and Disabilities) reforms is to join up help across education, health and care. I understand the aim and in an ideal world working together will get the best outcomes for children but experience tells me that the world is not ideal. Each particular institution has its own agenda, the needs of the child may be at the heart of the issue as long as their particular budget, guidelines, time constraints or staffing implications have all been taken into account.
I see our role as the coordinator, ensuring the whole process runs smoothly, which is often a full time job in itself! I have learnt many skills since navigating my children through these systems that I did not possess before. Minute taker, mediator, report writer, PA, secretary, public speaker, educator (I know that I am a qualified teacher but this is on a whole new level), doctor, therapist, the list goes on… When all my children graduate I will have many skills to take with me again into the world of work, a skill set that could see me walk comfortably into a role in middle management, sadly I will have no reference!
As parents we know them, love them, care for them, fight for them, cry for them and when push comes to shove are ultimately responsible for them. We don’t care about the labels but will endeavour to seek them as long as we need to for our children to get the correct treatment and provision. A label will guide the professionals, increase awareness and help to ensure that they have equality in reaching their potential. At the same time we will raise our children not to be defined by the labels that they acquire, to protect them from their stigma. We will teach them that each and every one of us is different and we all have strengths to play to and to embrace their perfect imperfections.
So who really has their best interests at heart? Labels or not, I believe we have to.
Person centered outcomes would be very general if everyone was clumped into one category. Some people are high functioning and others severely effected. There are so many unique needs and assistance requires justification for the cost. I have EDS, CMT, and the Autonomic Symptoms, as do two of my three children now 32 and 28. Advocacy never ends. In my childhood, I needed a doctor's note to be excused from Physical Education. The only accommodation under a "medical necessity" was being excused from Physical Education. The labels are suppose to be a tool for the school districts to use to determine necessary means to provide specific accommodations. My advocacy during my children's educational years were for accommodations that I knew would alleviate some of the problems encountered. I was informed that child study teams are reluctant to recommend additional/unique accommodations because school administrators are budget focused on benefitting the majority, non-classified students. The "special ed" administrator that dared to enhance the serivices for the classified students, was removed from the position as a result of her efforts of the minority. And she was the one that advised me. The labels help to determine and justify accommodations. None of us have exactly the same symptoms of any condition, and that alone makes it difficult. I would loose my mind if there was a general category that would leave us at the mercy of people in a position to make critical decisions for our needs based on their own prejudicial opinions.
Agree. Label or not, the focus must be to pull-together (providers and users of services) around negotiated person-centred outcomes and then bring the tools together to deliver them. Sometimes using the label will be the right tool for the job and at other times not.