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.

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Author: pearliejqueen

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

16 thoughts on “Beauty and Cruelty.”

  1. Hi jane. Have set up account coz of u!! Now a blogger just haven’t blogged yet. Lol. Unlike you with this great article. Honestly well written and beautiful as well as subject matter being awe inspiring. Again well done you on all counts xxx

    Liked by 1 person

  2. Sodium valproate. Ants love it. We went on holiday, left that mornings drip on the worktop, loads of dead ants stuck to it when we got back. Totes cleanly! And the orange stuff. Omg that stains like mad! True reality Jane. Only one of ‘us mums’ know. Love it xx

    Liked by 1 person

  3. LOVE this post! You and I are a similar age (as are our kids), so I also need to live until I’m 126. Not too keen on the cardio stuff, but I will gladly join you on the sofa and have a weep…although I must insist on a bottle of prosecco accompanying us too. Well, it’d be rude not to! Keep on doing what you’re doing…it’s great! Annie xoxo
    P.s. Will that sodium valproate stuff work on my moustache? 😜

    Liked by 1 person

    1. I’m sure it will Annie and will try and let yo know!You’re not a million miles away either are you,as if I wasn’t working this weekend I’d love to come to the fair.I’d be interested to see if Hannah and Pearl hit it off!How did I start following your blog-did you have a family photo taken by Janet Broughton? Jane x

      Liked by 1 person

      1. Ah ha! Janet, of course! Yes, we did have some photos taken (need some more when I’m not looking as jaded/washed out/just generally dreadful). Janet was the one that started me off blogging – I did a guest post on her blog. It’d be lovely to meet up although Hannah can appear a bit anti-social when meeting new people – she’s often in her own lovely little world. She probably gets that from me..in company, I’m almost as non-verbal as she is!…but that’s down to me being socially inept/shy/also in my own little world. Hope your work this weekend goes well. I’m off to the shops to get some of that sodium ‘tache cream!. xx

        Liked by 1 person

  4. Another very entertaining chapter – your writing is wonderful, you make me laugh in one bit & then take me with you through the tough everyday journey in the next. Wishing you all the best for the Christmas holidays and all that they may involve.

    Liked by 1 person

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