Belong.

Undiagnosed Children’s Day and SWAN UK,have prompted consideration of the importance (or otherwise)of diagnosis

Undiagnosed Children’s day is on the 29th April.

Did you know that approximately six thousand children in the UK with assorted Special Needs and disabilities do not currently have a diagnosis?

I learned this after Pearl’s first round of diagnostic tests at 18 months. I was astounded, surely the SEN teacher in the Child Developmental Centre was wrong? My girl was wobbly, couldn’t speak, was missing developmental milestones all over the place, and couldn’t walk. That HAD to have a name didn’t it? Pearl obviously had a diagnosis or would be getting one very soon. Oh yes.

In the interests of honesty, I’ll tell you a secret. I did not really want a diagnosis as it would prove there was a real problem that Pearl may not grow out of. I was also more interested in treatment and therapy than a name. Looking for a label seemed to imply that there was something wrong with my atypical, perfect child. Obviously if Pearl had a syndrome it would be called HGS (Happy Gorgeous Syndrome) or ‘Probably a Genius but slightly held back by circumstance syndrome’ (PAGs) for short.

So why do we all get so het up about diagnosis?

Children with SEN can struggle to fit in with the mainstream world. As you merrily bob along to the local Mums and Tots and shoehorn your child into Gym Babes (an experience I soon discarded as all the children younger than Pearl learnt to walk and graduated to Tumble Tots) it’s clear that there is a difference. We are social creatures and we all need somewhere to belong. As you realise this, and your friends are ignoring you as all you talk about is medications and hospital appointments you look around. Oh look! There is a Special Needs Community! They get it! In truth in the early years everyone I met in this community got a diagnosis and peeled off into specific support groups. I’m afraid to say that many in this community struggled with our lack of diagnosis even more than out pre Pearl friends. Hadn’t we met this nurse? Wasn’t our Paediatrician very good? Had we seen the Geneticist? Everybody seemed more interested in Pearl’s diagnosis, or lack of it, than Pearl.

So why get a diagnosis anyway?

Firstly it’s easier. When people ask “what’s her problem?” instead of replying “people who ask insensitive questions” you can give a short sharp punch, sorry, I  mean answer.

When the DLA send you the mother of all forms, you can save (some) time by putting PAG syndrome in the “cause of difficulty” box.

Importantly it may be that your diagnosis is a difficulty that doesn’t stand still, progresses, or responds to treatment. As a parent this is something you need to know. You may be able to stand on the shoulders of the giants of research and academe and benefit from their hard work.

Siblings. Those people who have learnt more about disability than many junior Doctors, they may need to know. After 3 A4 pages of rejections from the likely diagnosis club I was ready to throw in the towel. Pearl’s eldest sister, referred to in the blogosphere as “The Glory”had a very astute appraisal of the situation. At 15 she wanted to know could she have a child like Pearl? I had not even thought about inheritance. I had to put my feelings about the diagnostic process to one side for her peace of mind.

The main, overreaching reason I can see that we require diagnosis is that our society works on the Medical Model. The Professionals come in, they assess, diagnose and treat. Funding follows. We have all been brought up with this. It is the glory of modern medicine.

My preference is the Social Model, which takes everyone however able or otherwise, at face value and changes society to make it accessible to everyone in every way. Get with the programme people, we need adjustments. Make them. Unfortunately we are quite a way from this being our societal default. Until it is diagnosis will continue to be hotly pursued by medics and parents alike.

Where does that leave the 6,000? Where do they belong?

SWAN (syndromes without a name) is an initiative of the Charity Genetic Alliance UK, to support families of undiagnosed children. They are simply fabulous. Organising support pages, local groups, information sharing and giving parents the opportunity to vent and celebrate in a safe space. Importantly they also offer access to studies which will further future generations knowledge of the gene, syndromes and interventions. Because of SWAN Pearl took part in a study on Deciphering Developmental Delay, and because of that we have a genetic answer to her difficulties. Pearl has a mutation on GNA01 which has spontaneously occurred and was never tested for previously as she displayed different features to others with the condition (go Pearlie go!). This may help us learn how genes change, widen our awareness of what this particular gene is responsible for and help the Pearls of the future.

As far as this family is concerned though, Pearl is Pearl and that’s that.

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Find out more about SWAN on www.undiagnosed.org.

Share the news about Undiagnosed Children’s Day on twitter #undiagnosed.

Donate by texting SWAN11 £3 (or any amount up to £10) to 70070

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On a scale of one to ten…..

It’s time to step away from the unfolding story of a wobbly girl and her mildly eccentric brother and talk a bit about feelings.

I am a literary snob and have always hated greeting cards poems. Unfortunately what your midwife fails to tell you is that when you become a mother, they replace the rational part of your brain with mush.

I had already spent my pre-Pearl motherhood opening trite birthday cards, reading the previously despised verses holding them to my tender bosom, while sobbing “so true” If these emotions run riot when you have a “typical” child all I can say to you Extra Special Parents embarking on this journey is “if you have tears prepare to shed them now”

Three years into our journey, during a very low period which  characteristically involved a fight with the authorities to give our daughter equality of opportunity with her peers, you find me,  sitting quietly on the sofa,  having put down the phone on the latest argument. Shaking slightly and near to tears I hear an awful raw keening sound.  This sounds like an animal, caught in a trap, in pain, who had given up hope of rescue. As I begin to rock gently I realise the noise is me.I have honestly never heard a sound like it and as I sit, completely and horribly in the moment, I take apart every single fight, and pain, and triumph and struggle that my precious small girl and I had endured. Clearly I had been fighting for her so hard, and working so tirelessly to remain positive that I had squashed all this excruciating emotion down, down, down and there it all suddenly was.

As experiences go this is most definitely not one I would recommend- and why on earth would I want to share it with you? I have experienced emotions while embracing our new normal (or as a friend and I always say “living the dream”) which are dark,disturbing and hard to admit to. If on your parenting journey you have experienced some of these, please know you are not alone.

Pearl was our ‘extra’. Mr PJ has always wanted a huge family, but then to be fair he doesn’t have to give birth. We had fun practicing making Pearl, but after a year nothing had happened and a more permanent job prospect was looming. I was just about to suggest we stopped trying and I went back to work when I fell pregnant.

When Pearl arrived and it became clear she was entirely herself, along with the fear and panic, I had a few questions. Why did we have her?  We had two children already, I could have worked-what were we thinking?  What was Mr PJ thinking?

I was a Christian, was this my destiny? Would Pearl be healed?  Did God mean this to happen?  Were we being taught something?  Was there a God, or was everything totally random?

I was embarrassed. Embarrassed to have ‘failed’ by giving birth to something that wasn’t ‘perfect’.

I was worried about the future. What would people say?  How would they treat Pearl? Would she talk, walk, feed herself, be toilet trained?

I was uncomfortable, I did not want to be a Special Needs mum. I wasn’t the type. I was the helper, not the helped.

I was regularly hit by waves of despair so intense I felt they would surely wash me away.

Mainly I felt guilty, guilty for feeling all these feelings. Guilty for making this child who was finding the simplest things so difficult, and guilty for changing the family dynamic so dramatically (oh how I underestimated my wonderful family)

I was completely awash with emotion.

 

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At this point nobody asked Mr PJ and myself how we were feeling.

No professionals checked,they were too busy diagnosing.

No friends asked , I think they were worried they wouldn’t cope with the answer.

Several people told us how we felt.

“What a good job you’re a Speech Therapist, you’ll know what to do’

“God only gives special children to special people.”

“Consider it pure joy brothers when you face trials of any kind” Pure joy!  Thanks St. Paul-I’ll give it my best shot.

An older woman of my acquaintance  said “But you don’t regret having her do you?” Never, NEVER ask a parent struggling in the early days with therapists, appointments, tests, NEVER ask them this question.  You don’t want to know the answer and actually neither do they.

“I expect you’re grieving the child you didn’t have?”  No actually, I was grieving the difficulties my beautiful beloved Pearl was facing to do the simplest of things, and the amount of horrid appointments and needles and knives she was facing.

So you discover me overwhelmed by feelings of every kind, bombarded by the opinions of the well meaning, and exhausted by sleepless nights and fights with the authorities. Unable to share these emotions with my amazing best friend/husband/partner in crime- they were too dark and dreadful- and fighting smilingly on. And that is how I came to find a keening animal inside me, and that is when I realised,that I had to be honest, with myself at least, about the trials of those dark days.

With the benefit of nearly a decades hindsight, I can tell you these feelings come and go. Some disappear altogether to be replaced by something else. Life becomes more usual, and positive happy feelings come creeping back. From time to time, a form you fill in, or a look someone gives you, or another family sadness will surprise you into re-experiencing them all again.  When this happens people I have some advice. Don’t listen to the people who think you should have got over all that by now. Don’t try to do too much. Be kind to yourself. Remember, coffee, cake, wine , chocolate,comedy.  Whatever it takes.  Pick yourself up dust yourself off and…well you know the rest.

When Pearl and I are curled upon my bed at story time, or on the sofa with a biscuit; I often say “shall I tell you a story about you?” This child has the highest level of self esteem in the whole family. Of course she wants to hear this story-who wouldn’t?

Once upon a time there was a Mummy and a Daddy and The Glory and a Rab. Daddy looked around and said-“I just don’t think our family is finished yet” and then Mummy found out there was a baby growing in her tummy. One day Mummy said-I think this baby is going to be born, and went down stairs to the playroom-and what do you think happened next?Pearl was born and she was so beautiful, and we looked at her and we knew our family was complete. Pearl was what we had been waiting for.

And dear reader,we lived emotionally ever after.

Testing,testing…..

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

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.

 

Beauty and Cruelty.

I have learnt many things since the advent of Pearl, and I do aim to dispense these wise gems over the course of our journey together.

Today however I include a Rookie guide to some of the less inspirational nuggets of wisdom that have come to my attention.

Sodium Valproate is the stickiest substance known to man. Despite being sugar free Pearl’s epilepsy medication can Ninja a way through a pair of jeans onto an unwary (and unshaved leg ) It  then acts as a waxing agent as you remove the jeans, the leg hair and the top layer of skin.

People rate poo. The Bristol stool chart is a handy little reference,which tells you in words and pictures no less, what different poos look like.This is so as a parent you can aim for your constipated child to achieve the gold standard of stool success. This chart my friends was presumably some dear souls life long research project. I shit you not.

Most people muddle along. I am capable of leaving the house looking like a reasonable example of humanity. Judging by friends Facebook and Instagram accounts everyone else is living in a glossy magazine, while my house..well this morning I’m sitting on Pearl’s abandoned dressing gown while viewing 3 of last nights plates, an empty yoghurt pot and a copy of Elle magazine, which while feted as the feminist issue contained fashion adverts, and advice on the latest looks for the first 165 pages. I did put some pictures of my floor on twitter with the hashtag #notveryhomesandgardens  but only got one RT and a social worker visit.(Reader I lied)

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Parents of Special Needs children have super powers – I’m not going for strength, compassion, and amazing reserves of love, I’m aiming for immortality. The care system in Britain is patchy, transitioning into the adult service is difficult – I therefore need to live until I’m at least 126 (Pearl will be 80) to look after Pearl in my own home. I also need to be in tip top physical condition. To this end I mix months of cardio,healthy eating, strength conditioning and being fabulous with a month of two of depression, lying on the sofa eating everything and weeping quietly. I’m not convinced of this as a long term health plan, but hey I’m 46 I have decades to get this sussed.

Children are children.Just because they have special needs doesn’t mean they are soft biddable angels. In my experience children show NO mercy. You may be having the day from hell, but they are quite happy to twist the knife that bit further just to see what Mum may do next. Currently we are having getting dressed resistance. This involves Pearl going completely rigid and screaming as if she is being murdered. If you catch her unawares with a joke the laugh that follows does rather indicate that she is not in pain but is just pushing Mummy’s buttons. (Incidentally she absolutely does not do this at school, and this news in no way makes me feel like a failure)

People do not self edit before they open their mouths. Therefore an extraordinary level of physical restraint needs to be developed if you want to avoid being banged up for GBH. My personal favourites have been “I’m sorry I thought she was normal” “Have you tried B12 it helps with development” And, overheard,  “don’t stare at the poor little crippled girl she can’t help it” Most extraordinarily on finding out that Pearl had difficulties a member of church  said “I always thought there was something”. Well congratulations lady, and good for you. A 3rd time Mother and Father , Grandmother, several Aunts and Uncles 1 GP, 1 Health Visitor and a Paediatrician didn’t realise so pat yourself on the back. I’m not  that keen on the head tilt and “bless her” either.  Strangely I have to have regular shoulder massages to get rid of the stress that I can only imagine comes from clenching and unclenching my fist and jaw in an everyday trip to the supermarket.

A sense of humour is actually mandatory. We deal with extraordinary battles, physical and emotional stress, and rub up against death and dying in people too young to have really lived. I personally recommend a half hour comedy a day – and am currently mainlining  Peep Show as a kind of medication. My rule of thumb – if it makes you laugh so hard coffee or wine comes out of your nose it’s successful. This can leak into your everyday life, it is possible to have coffee with people who’s Aspergic son has attempted suicide, or sit with a friend in hospital whose 8 year old nearly dies while you’re there, and laugh and cry in equal measure.

Always carry tissues.  Everwhere.  Life in short, is both more wonderful and terrible than I could possibly have  imagined. The extraordinary thing is it is both of these things at the very same time.

As far as anybody knows we are a normal family….

In which everybody’s anxiety becomes overwhelming and some of us become guinea pigs.

In case you (or I) had forgotten there are two other children in my family.

The Eldest who I refer to as “The Glory Of the Clan” and Rab. While I worried, drove Pearl to appointments and physio’d the living daylights out of her, they were at school doing schoolie things.

You know how some children are “eccentric” “An Old Head on Young Shoulders” or “Have Been Here Before”? That was Rab. On leaving nursery for ‘big school’  he declared to the teacher ” Mrs B when I leave here I will hold you in my heart forever” (he was 4). Mrs B was charmed and asked if that was how my husband talked to me at home. It wasn’t.

For all of you wonderful and observant readers who already able to diagnose him, I would like to point out that all children are different and some are more sensitive than others. So there.  Dubbed “Victorian Rab” by a friend we rather liked it.

The sensitivity was definitely intensified by a game devised by The Glory of the Clan called  ‘Baby Goes to School’. The Glory was the Teacher and Rab was baby. Baby did NOTHING right and was constantly berated by the miserable teacher, apparently a close relation of Matilda’s Miss Trunchbull.

At real school Rab was becoming very, VERY anxious about failure. At 6. He was finding completing work challenging mainly because his ideas for topics and work were so unrealistic. If the subject was transport while other people wanted to draw a train, Rab  decided he wanted to design a car. A working car. And build it. When he couldn’t he became very angry with himself and frustrated, because of course all  the rest of the class could finish their work properly,and he just couldn’t, and he couldn’t adjust his expectations and he found it pretty difficult to move onto the next task before completing the first. Rab felt he was so stupid that one day at home having failed in a self imposed quest he charged down the stairs , crying and saying he wanted to kill himself. At times of stress this would change to the even more distressing “kill me Mummy”

At home Rab was concerned about death, us dying, something happening to Pearl, flood, war. So far so tender hearted, but he was also becoming angry. This built up and shortly before Pearl’s first birthday he was having massive,violent temper tantrums which included throwing things and wilful destruction of property. Rab also had some odd anxious looking behaviours. In the car he would pluck at his face and then put his fingers in his mouth and make to swallow. He did this repeatedly. When asked about it he said people were shooting arrows at him and he had to catch them and get rid of them.He was very imaginative. Rab also had to touch everything ,and if you told him to leave something alone he had to touch it once more, again, before obeying .He loved being outside and playing ,but hated getting his clothes  or hands dirty. If a fire engine went past (and his school was opposite a fire station) he put his fingers in his ears , closed his eyes and screamed.

I see you people- sit on your hands and keep your opinions to yourself- he was obviously just sensitive, tender hearted and picking up on the worry about Pearl that was battering our household in tumultuous waves.

In between these outbursts Rab was a happy, cheerful, loving and empathetic child.He was popular had a handful of good friends,and was well liked by the teachers.

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Luckily at this point I spotted an advert, from a local  University Psychology department,in the local press that said “Anxious Child?” Screaming “yes!” I phoned the number, Rab was diagnosed with Anxiety Disorder and became part of a double blind clinical trial. He was, fortunately, chosen to receive remote CBT (Cognitive Behavioural Therapy). The parents  (me, as Mr.Pearlie J had to stay home and hold the fort) attended a group, learnt CBT strategies and went home with homework to apply them to the unsuspecting anxious child. It was interesting, it was effective Rab was fixed!

Baby Goes to school was discouraged, Rab was given one to one support from  fabulous and effective parents,  Pearl continued to be strung up in towels and rolled over Physio balls, The Glory was glorious, and, again I had it nailed. I had accessed services, provided treatment and fixed the problem.  I was Superwoman.

“Don’t thank me that’s what I do” (Captain Adorable)

 

Sit. Walk. Stand.

I have always been a homebody. I like being at home with my things around me. I enjoy making house, choosing decor and having a quiet space. Mr Pearlie J is much more gregarious and could live life as one big party. This is the man who watched a programme before we had children about a family of 13, looked at me and said – “that would be excellent wouldn’t it”?! (We’re still married) I do extrovert in public but only if I get to come home and recover peacefully in my own surroundings, preferably with a book and a blanket (I’m so rock and roll)

Now gentle reader, my home which had always been a place of refuge, became open house for a variety of professional visitors, who could turn up apparently at will.

The very first was an utterly phenomenal Physiotherapist who was also a ‘school gates’ mum. In retrospect she set the bar really high and made me believe that professionals were there with practical help, to make a supportive plan for me,  Mr Pearlie J & Pearl. I,  remember, had been one of these professionals. I really believed in the therapy services and the “Multidisciplinary Team”. For the uninitiated this is a group of professionals from different disciplines, including medics, therapists and social services. This team works together, sharing information and including the patient/carer as an equal in problem solving. I’d worked in hospitals, this is how we rolled. It was effective and rewarding. Unfortunately it was also something I was seldom to meet now I was officially on “the other side”.

Initially this Physiotherapist phoned me to check it was alright to come, as we knew each other. It really was. She was lovely with Pearl and spoke to me as an equal. This didn’t strike me as strange, but became increasingly rare as we moved through the system. Pearl was thoroughly assessed and Hallelujah! A reason was given for her inability to roll over. (Hyperflexion in her hip joints) Perfect. There was a problem, it was purely physical, and it explained the knock on effect to the rest of her development. We could put it right and she would catch up!

The awesome Physiotherapist showed Pearl how to roll over. (The method she had been using of throwing her head forward and shouting crossly had proved ineffective). She showed me how to facilitate rolling. In three days Pearl could roll over! This was brilliant, I was amazing at parenting and at this rate she’d be up to speed in a month. Hurrah!

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We started working on crawling. Mr PJ and I spent days on the floor at opposite ends of the carpet.  Pearl was strung up with a towel around her middle, letting her take some weight on her hands and knees., while her Dad did amusing and encouraging things to remind her that locomotion was a good thing.

We started to breathe more easily. Obviously there was a problem, but it was responding to therapy. We were proactive parents, with help we could sort it out. Pearl was taking a different route to the same place as her peers and siblings. One day we would look back and laugh, oh how we’d laugh, at how concerned we had been.

I should probably introduce you at this stage to The Godmother. I met her when I was training to be a SALT. She was too. She was stylish, attractive clever and funny and became one of my very best friends (Still is). The Godmother was outgoing, opinionated, political and independent. She became the eldest’s Godmother. Oh and she also had cerebral palsy. This impinged on her walking and movement but she lived a normal life with very little effort (how I’ve had to apologise for this lack of insight on my part since Pearl arrived!). Anyway as far as we were concerned she was the model of how Pearl would probably end up. Physical problems, fine cognitively, and able to function without much help. This was what we wanted. Enough disability to be character building without being too distressing – you know the kind of thing. For all these reasons, Mr PJ and I decided that this is what would happen with Pearl. This is what her future would look like.

The physiotherapy was all encompassing, but it was working-I had a project and was back in control. By the power of therapy I expected to have Pearl standing and walking by her Paediatrician review. We’d be signed off and congratulated for being such awesome parents.

I couldn’t wait.

Leaves on the line, and other reasons for delay.

In which I become obsessed with developmental scales and consider running off to sea to become a sailor

First you bring a lovely little baby home, or in from the playroom if you are a fantastically high achieving middle class stereotype.

You breastfeed the baby, because you can and you have before (At this point I should admit that babyhood is one of my favourite bits of parenting.The dreamy, sleepy, milky days where you can lounge on the sofa in between applying cold cabbage leaves to cracked nipples-I really don’t mind.The singing, smelling cuddly bits especially when you know this is the last one. Bit fab actually)

This child fits in really well with the two others, has to, they are both at school. You have a routine.

This baby sleeps.  A lot. This is good. You have two busy children and you like 10 hours sleep a night (yes truly). When she is not sleeping she does baby things. Looks at everything, waves her arms and makes noises. She passes her baby tests at 6 weeks old and her hearing tests. Also at 6 weeks when she realises you are knackered and her survival depends on it she learns to smile. The child is clearly a genius just like the other two.

But… Somewhere deep within your mother’s heart there is a stirring of disquiet. She does sleep an awful lot. Her baby friends born at the same time, seem to hold their heads up more strongly. Gloriously these peers are at your church and all born within a month of each other, so you can check their progress every week and be ABSOLUTELY delighted for them. Her feet (which I’ve always thought were the best bit of the baby, small soft, unfootlike, yet full of potential) are permanently cold and very dark. You are referred to a Paediatrician, he checks her,  she’s fine. She has poor circulation in her feet (so do you) End of story, no worries, no further contact necessary. Warm socks, leather booties job done.

So now she’s 6 months old, fitting in nicely, smiley, biddable and happy. And adored.It is possible that no baby was ever doted on as much as this one. Her two older siblings bounce her, sing to her and love her, and she loves them right back. The baby friends are rolling, sitting up and starting to babble. This baby here, this precious Pearl is happy, vocal but surprisingly floppy. She is progressing along a developmental line, but slowly. Either that or the baby friends are all superhuman. They probably are. Her elder brother and sister were ridiculously precocious, so it seems likely this is what normal development looks like.

At this point you’re confident, as she’s clearly perfect, but concerned enough to dig out an old textbook with a month by month developmental scale on it. Actually it’s OK. She is following a line, she’s lost a couple of months in all areas except speech.

Oh. But her babbling is a bit odd in the mornings. No consonants to speak of (do you see what I did there?). Nobody else in the family is a trained Speech And Language Therapist so they don’t notice, and you haven’t worked with children for years so might be wrong.

This is the stage when an older lady of your acquaintance utters the immortal phrase “You worry more about that child than any of the others” Just you wait Mum, you ain’t seen nothing yet.

So you plod along happily, bit bothered, watching, waiting and soon it’s the glorious day of the 6 month check.

Ideally a 6 month check won’t be delayed ’til 9 months because of an admin error, and ideally it isn’t scheduled to coincide with the nap time of the said 9 month year old.

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From the moment I took off Pearl’s coat, and she sat with her chin on her chest and her back rounded, I could see the Health Visitor was worried.In a spirit of being no bother at all, I told her everything was fine. Pearl was tired (she was) she was slow (also true) but that was all. Babies all develop at different rates don’t you know. By the end of the visit I was cross, upset and booked into see the Paediatrician the following day.

Despite my concerns I did think that it was all an over reaction. Nobody in our family or friend group were concerned, it was only me, and I think we’ve already established I was making a fuss. Anyway as an assertive, knowledgeable woman I took Pearl to see the Paediatrician early in the morning when she was at her best and persuaded him it was a fuss about nothing. He agreed and arranged to review us in 3 months. We were referred to Physio for further assessment and to watch her progress.

And this dear reader, was the moment when all the joy began to be slowly leeched out of being with my beloved Pearl to be replaced by assessments, monitoring and a growing feeling of losing control. I had the first desire to scoop her up and run away with her somewhere safe and secret away from prying eyes. this feeling was to become increasingly familiar over the next few months.