Balance.

I had perceptions of special needs parents before I became one.  So strong, so calm.

Genetically programmed to be fairly pragmatic about life, I generally trot along on an even keel with the help of Citalopram and HRT (no I’m not that old, yes it was early).

Apart from having a constant obsession with Pearl’s bowel habits (possibly tmi-let’s just say for her own dignity that chronic constipation is a thing for girls like Pearl and it’s horrible) it’s fair to say our life has rebalanced to a new abnormal, normal.

True, The Glory asks me 100 times a day if her hair is alright, but she is 17.

Also Rab told me he saw a man walking a tortoise on the way to school yesterday, and although I wondered if I was dreaming, I am prepared to believe him.  He is on the spectrum and honesty is kind of his thing.

When Rab was out of school for 11 months having meltdowns and suicidal ideation (more of this in a future blog) our abnormal normal was shaken quite badly. We found the right school, he settled in, we picked ourselves, dusted ourselves off and…well started all over again.

During a regular appointment The Orthopaedic Surgeon blithely mentioned “keeping Pearl on her feet for as long as possible”.  I didn’t actually realise growth and development may lead to a future decrease in mobility.  I was thrown off course but again recalibrated.

Parents and carers of children with physical, medical and learning difficulties are among the most emotionally resilient people I know. Have to be.  We live in the moment, we really do not know what tomorrow may bring.  I took part in a Study  by the local University run by the lovely Dr Katherine Runswick Cole.  Investigating how parents of children with additional needs developed emotional resilience in their offspring, it was very interesting.  First question, “what helps you as parent maintain a sense of yourself when parenting a child with additional needs?”.  Deep thought on my part, “Having my hair cut at Toni & Guy”.  Truly.  Bless Katherine.  As we chatted over coffee later it transpired that she too had a child with additional needs.  What did she do to maintain her sense of self?  Went to Uni got a degree and followed it with a Doctorate.  Hmm.  Hidden shallows-that’s me.

Emotional reliance is essential to us as a family and I feel is an absolute prerequisite for children to develop good mental health.  Pearl has it in spades-she came with it.  The other two, have had to develop it as well.

Thus far frankly, a long preamble about the thing that nearly broke me.

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My washing machine.

Pearl drools, constantly.  She is doubly incontinent.  Hate that phrase.  Prefer “working towards continence”.  As a result I do a LOT of washing.  Three loads a day at least, sometimes six.  Care for the Family suggests that bringing up a disabled child costs significantly more than bringing up a ‘typical’ one.  In our family that money goes on washing machines. (Oh and the Toni & Guy bill).  We average a new one every two years.

Fortunately we have a wonderful local family firm who fix and sell machines.  Bob has come out on many an occasion to fix an ailing washer and before now to “just get me any model and plumb it in before this evening please”

Gentle Reader, I can endure bad medical news, I can fight local authorities, I can speak to MPs, I can even leave the house looking like a reasonable approximation of a human being, but remove my washing machine and I am a broken woman. I wish I was joking.

Last week I was working on some admin when the washer started making an odd noise.  An error code appeared.  I googled and fixed and ran another programme . It worked.  Then it didn’t work, then it locked itself with 8kg of wet washing inside.  I may have cried.  Bob arrived  (I have him on speed dial) it worked.  Bob left  .It stopped working.  It carried on glitching for two days and then, as I was about to phone the manufacturer, spontaneously healed itself.  Clearly a software issue, said Mr PJ, Bob agreed.  I suspect it was possessed.

I began to loose all sense of reason.  The feelings I usually bat away “I can’t do this””I’m a rubbish mother/wife/human being”, “I’ll just run away and join the circus” (my back up plan incidentally, along with two friends,we have names and acts already chosen). Feelings which would more reasonably be linked to having two children with individual needs and one sitting AS levels, all became attached to the washing machine. It is ridiculous, I know it’s ridiculous.

Did you know when the ravens leave the Tower of London it will fall down?  True Story.  In our house when the washing machine breaks down the family crumbles.  More accurately I go under and try to drag everyone down with me.  I am considering having a plumbed in back up washing machine.  We may have to build an extension, but it would be worth it surely?

I remind myself that before the advent of Pearl I had a life, skills, a degree, a Profession for goodness sake.

It has all come down to this. My good mental health depends on good hair and a working washing machine.

Hidden shallows, my friends, hidden shallows.

PS. If I’m alone in this, keep it to yourselves or the next blog will be from the Big Top.

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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.

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)