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.