Testing,testing…..

In which I resist searching for a diagnosis, and a small person resolutely refuses to be categorised.

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Previously in The Wrong Kind of Snow….

Problems were denied, therapy was applied, and cunning and well articulated arguments held off the Paediatricians desire for further assessments until Pearl was two….

It happened. Pearl’s second birthday came, and she didn’t wake up walking. Or weight bearing. Or actually sitting up particularly convincingly. Poor show, my girl, poor show. Despite my assertiveness I had only postponed the inevitable, there was something wrong that probably needed a proper name.

We do like labelling things,us humans, don’t we? Let’s face it, life is unexpected and confusing. In the face of chaos, to control our fears, we label.

Objects have names which rarely relate to function, but allow us to slot them neatly into a category.

Our forefathers set off on expeditions to collect, label and categorise animal, vegetable and mineral.

In this ,we set out to both control our universe, and also assert authority over it. If that is the aim we really ought to get over ourselves.

Science seeks explanations, and that is the main point, it seems to me, of diagnosis.  Categorize, explain and understand. This is a noble aim.

I have spent my whole life fleeing from labels imposed by others. The Frumpy One, The Studious One, The Serious One, The Christian One , I just wanted to be appreciated for myself, that was all. I was not keen to have a label stuck on my girl even though it was fast becoming clear that she was “The Disabled One” Also if she had a diagnosis it confirmed that she had a problem she would not grow out of. I was not emotionally ready for what that may entail.

For the next 18 months our Paediatrician,who was nothing if not thorough, set about diagnosing the problem that was Pearl.

Ah there’s the rub. Pearl was happy, interactive, bouncy, giggly, fun.She clearly HAD problems, but she was not a problem. She was also the fittest of all of us in the house,  she rarely had a cold , and had no other medical problems.

Science and the NHS required me to put my beautiful, happy, healthy child through a series of invasive tests, while I read up on all the possibilities and shared them all with Mr Pearlie J,  because apparently ‘A Problem Shared is a Problem Halved’. (Actually ‘Misery Loves Company’)

Pearl had MRI scans (plural) blood tests (ditto), a spinal tap and a muscle biopsy. Parts of our child flew around the country  (and world too apparently) while we waited. And waited. AND waited.

You see for some tests they give you the diagnostic possibilities and then leave you 8 weeks to worry yourself into the ground. The prognosis of these various conditions were quite poor and the future looked, quite frankly,terrifying.Rather than having a child who was slow and would overcome difficulties in time, we had one who was ireedemably broken and would never live independantly.

The Professionals at this stage are happy, and slightly excited at being in control and possibly finding something rare to show students. Perhaps they can get a paper out of it?  The Scientists are busy analysing and everyone takes their eyes off the parents. No one thinks to ask how you feel about this, as you settle in for the long wait.

If I’d felt slightly ambivalent about testing the situation was compounded by the Paediatricians explanation for the first test.

“We will test her for Prader Willi Syndrome”

Me (unable to keep my big professional mouth shut)”Oh. But (apart from having no off switch when it comes to eating,in which my whole family has PWS) she doesn’t display any of the diagnostic criteria”

“No’

Me (unconvinced)”I don’t think she has Prader Willi. Do you think she has Prader Willi?”

“No, probably not”

Me(becoming exasperated but unwilling to either show it or give up)”So why do we need to test her?”

“It’s important to tick all the boxes”

This I feel is Science speak for “I need to prove I’ve not been clinically negligent”I personally felt it a waste of time and the tax payers money,however I was not the Professional in this situation but only the parent.

After 8 weeks we had a two page print out of what Pearl did not have.

After 6 months we saw a Geneticist who repeated some of these as she thought Pearl may have Cerebellar damage (she didn’t) or Angelmann’s Syndrome (nope).

The Neurologist took some scans (MRI) as I was convinced Pearl had Cerebral Palsy (no) and cut a chunk out of her leg to see if she had any metabolic disorders (also no). Pearl also had some cerebro spinal fluid removed to see, well honestly I can’t remember what, but it was all normal.

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Some labels are better than others….

What happens if you don’t have a diagnosis? First of all it’s not at all rare. Check out the Syndrome without a name (SWAN) website and you’ll see lots of fabulous undiagnosed individuals.

Secondly it’s not true to say you won’t get therapy or funding.In the U.K. many, many children given a  ‘non’ diagnosis of Global Developmental Delay (science-speak for, we haven’t a clue, in my experience) receive all the therapy they need. No diagnosis does not mean the issues are any less real.

Following this the highly specialist Consultants lose interest and put you on long term review. That leaves you,the therapists and the Paediatrician to find your way.

Friends and family (and those delightful inquisitive people you meet in the supermarket) find it very disquieting. She must have a diagnosis ! Look at her !  This is usually followed by “that must be so hard for you not knowing what’s wrong” head tilt.

I anxiously hug my guilty secret.I’m pleased. No diagnosis means no prognosis good or bad.She may achieve, she could speak, she could walk. Pearl is just Pearl and that’s that.

I never liked labels much anyway.

 

Author: pearliejqueen

Mother of Pearl and two others.Reluctant specialist in special needs parenting.Champion procrastinator,and escaper to the world of Vintage.

12 thoughts on “Testing,testing…..”

    1. Thanks.I know I did when I was working.I think perhaps it’s different when people have acquired a disorder as the explanation can help-but it’s still dehumanising to see someone as a syndrome rather than a person.I am very aware that the experience is different for everyone,and I know some parents wish that they could have a diagnosis.The problem with that is everyone is different and prognosis even within diagnostic groups varies hugely-even more so within ASC.I love science,but I think our faith in it to answer everything is naive at best!

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      1. I am writing a book for teachers about ASC at the moment and the hardest part is trying to get over the fact that every child is unique and first and foremost a child, that the diagnosis doesn’t limit what they can achieve – and then give enough suggestions for support to cover many possibilities! Am getting there (I hope!)

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      2. I think education in the mainstream is moving further and further into the one size fits all model-based largely on targets imposed on schools by central government.They need to wake up and look at the stats about our high level of mental health issues in children and adolescents.The diversified curriculum promoted in Special educational settings should be available across the board.Good luck with getting difference over,you know what they say “if you’ve met one child with autism:you’ve met one child with autism”have you read Neurotribes by Steve Silberman yet?It’s excellent .(I did mention in the blog I was opinionated didn’t I!!)

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      3. I’m working my way through Neurotribes at the moment. It is waffle in places but I cried when I read about Lovaas’s treatment of autistic children. I think we will have some good discussions this year!

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    1. Thanks.We seem to be ready for older learners to have different learning styles and abilities,but expect our school ages to be all the same.Not the same in special ed where the teaching is forced to be more creative,which I think would benefit all learners .

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