In PODD We Trust.

In which Pearl discovers an effective way to assert herself, and considers a career in stand up.

Speech, in Pearl’s opinion is overrated , or perhaps in our house she’s just unable to get a word in edgeways.

Pearl has developmental verbal dyspraxia and it renders her non verbal.

She is extremely vocal, but in reality the 1-2 consonants and vowels she chucks around are only recognisable to her nearest and dearest.

Dyspraxia describes a difficulty coordinating voluntary movement, verbal dyspraxia relates to the muscles of speech and articulation.

Humour me for a minute. Say “buttercup, buttercup”as quickly as you can. Tricky isn’t it?  You are using the whole of your mouth from the tip to the base of your tongue, with a bit of lip action thrown in for good measure. Most of us do this merrily all day long with very little effort. Clever aren’t we?  Pearl just can’t. She has plenty to say, but lacks the articulatory dexterity to say it.

In order to get her own way Pearl shouts “ah ah ah” points, grabs us and takes to the object of desire. Nearly all children do this pre-verbally, in our house it’s been the background noise for the last 9 years.

Until now.

Gayle Porter, from Australia,developed the PODD system for children with cerebral palsy. It  is beginning to be widely used in this country. PODD counts as AAC (assistive and augmentative communication) and is low tech (it’s in a book-how very last season!)  It’s also becoming widely used on tablets.

So what does PODD mean and what does it do?  In our house it means a telephone directory sized book being thrown into your lap, followed by vigorous page turning and insistent pointing. It means during a phone conversation with my sister a child previously only able to say “eh” for yes and head shake for no, telling me to “hurry up” It means the TA at school being told in no uncertain terms to “be quiet” In essence it means communication, and proper, stroppy, nine year old communication at that.

Now for the science bit. PODD stands for Pragmatic Organisation,Dynamic Display  (no, me either and I’m a qualified Speech and Language Therapist).The child learns to use it as a communication partner, the adult uses it modelling visual language alongside verbal. I mean you point to a picture and say the word, the same as you may point to an object and say the word to your baby. It is supposed to be natural and instinctive.

In our reality we have a huge thick book.Each page is split into 12 pictures.Each picture links through an index to another page. Every PODD conversation starts with “I have more to say”  then through pointing and flicking the more, can be said.

A typical conversation in our house

“More to say” (turn page)

“It’s going to happen” (Still find that slightly sinister)  (turn page)

“go” (turn page).

“Trafford Centre”(turn page)

“People” (turn page)

“Mum” “Pearl” (turn page)

“Go” (turn page)

“Cafe Nero”(turn page)

“babycinno”

So basically a non verbal child has displayed her hand, and turns out to be a brand obsessed lady who lunches. Not sure I’m that surprised.

Joking apart it is a complete revelation, I’ve always known Pearl understands more than she says but really she understands far more than I realised. She can explain her mood, make food choices, boss us all around with decisions for days out, and join in with a lesson.

The latest and most glorious thing is using PODD for play. Quite quickly we developed a silly game. Pearl points to the weather page, I say “This is Mummy Scott’s weather channel and here is Pearl with the weather” Pearl points to a weather picture and then points outside, and cracks up laughing, because she never chooses the weather that is actually happening. It’s her first joke, and like all jokes was very funny the first time.

There is a side bar on PODD that has  “oops” to flag up making a mistake.Not for Pearl however, she fell over at school (a regular daily occurrence for a wobbly person) crawled over to PODD. Pointed at oops and fell about laughing, as did the rest of the class. There is a very real chance she’ll be the first PODD stand up.

Now  we have pretend play. Toys having a tea party will use PODD to talk to me. I must have modelled this once, now it is a regular occurrence and I love it-because it is a very normal developmental use of language.(Also Elsa doll told me she loved me).

An artificial and cumbersome communication book is leading to natural and enjoyable communication. I cannot begin to express the difference that this simple bit of “low tech” has made to our lives.

If you have a non verbal child,  PODD is worth a try, however, AAC is not an instant and easy fix to communication.

Does your child use you as a communication aid?  You spend a great deal of time with your small person, chances are you can interpret their body language, sounds and needs.It is easier and quicker for your child to allow you to anticipate needs. If you want to use AAC you need to grit your teeth and purposefully ignore some of these tells. It’s hard, but worth sticking with.

Is your school supportive?  To develop use of AAC, everybody needs to be on board and understand how to use the system and, most importantly, use it. Pearl’s school brought PODD to our attention, made the book up with our input, and use it daily. If it was just happening at home it would not be anything like as effective.

Are you prepared for people to stare at you in the street when you use the book? Oh sorry, you have a child with special needs, you are probably already all over this one. We have found Pearl’s book a talking point and helps make connections, she is an experienced food orderer with it, and it has met with lively curiosity from children her age too.

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I still wake regularly dreaming that Pearl has started to speak in sentences, but  PODD is a brilliant and viable alternative.She may yet develop some speech, or begin to use a more high tech aid, but in the meantime, the sound of laminated paper flicking over and the insistent jab of a finger on “Mum” “love you” will do just fine.

 

 

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These boots.

In which my belief that the right footwear is the answer to everything is challenged.

Previously gentle reader, you left us on the wrong side of a two way mirror, enjoying all the benefits of early intervention.

All parents of  children with additional needs will know about time management. As well as the Child Development centre, we were fielding dozens of other appointments, sometimes on the same week, by a range of services, apparently unable to communicate with each other. Over and over again, the exact same questions. Not irritating at all. As I wanted to help the youngest, and as I had been The Professional on the other side of the clip board just a few months previously, I complied with all of them.

Have you ever read The Special Parents Handbook? Go and buy a copy now. Yvonne Newbold points out that the people sending the appointment are Public Servants. We are the public. They work for us. We can choose which appointments are beneficial, change times and ensure we don’t become overwhelmed.(Two appointments in one week may be doable, two in one day. No. Just no).

The latest appointment involved feet.I love boots and am a firm believer that with the right footwear anything is possible.The Physiotherapist must have been of the same mind as she gave Pearl a pair of the sweetest little white boots with pink laces. (A school mum thought they were designer) They were Piedro boots, and as well as being cute enabled Pearl to pull herself to standing. The appointment,and the department that gave us these beauties, has proved to be the bane of my life.

It started well. A fabulous, kind and experienced man, who turned out to be an Orthotist measured Pearl, looked at her gait, and discussed planning forward with her Physio. The boots arrived. They worked. In my mind now, Orthotics was a department that believed in multidisciplinary working, was patient centred and provided killer footwear. How little I knew.

At this point, as I have found so often,there was very little explanation of the service,what it was for and what else it provided. Every eight weeks or so, we were called in, measured, and new shoes were ordered. They were different colours! They were cute! We had choice! I loved it.

Half a dozen pairs of shoes in, Orthotist and Physio exchanged glances and said Pearl would benefit from  splints. For some reason, I assumed these would give extra support, help Pearl learn to walk and then be discarded. Taking Forrest Gump as my reference (Run Pearlie, run ) I imagined one day soon she’d walk out of them and into pair of ordinary shoes. (Insert hollow laugh here)

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For the uninitiated here follows a description of fitting a child with Learning Difficulties for AFOs (splints).

Mother enters Stage Left with child in buggy. Child is interested and curious, she knows the staff and the room has toys in. She wants to crawl around and explore. A new Physio enters Stage Right. The Orthotist bends the child’s wonky foot into a right angle with her ankle. The child is not keen on this turn of events.The new Physio waves toys and books in front of child. The child is unimpressed, but happier when the Orthotist releases her foot. Unfortunately he then returns with a metal bar and wet bandages for casting. Holding her foot at the correct angle, he skilfully wraps her foot below the knee.Mother is fascinated, child less so. As the plaster sets she begins to scream,the Physio waves a book,Mother sings  Twinkle twinkle little star (!?!) with a rising tone of panic. Orthotist cuts off  set cast (more screaming, more singing) and releases the little foot.Child is now crying real fat tears, and buggy, child and mother are covered in Plaster of Paris,as is most of the room.

I would love to say that being cast for splints gets easier with familiarity. I would love to say that.

Let’s go back to the first splint experience. Following Pearl shedding enough tears to wash the Plaster right back to Paris, we got to choose a pattern for the splints.This was more like it.  Design is much more my kind of thing.

Two weeks later we return.The lovely, experienced Orthotist is poorly and someone is covering.This someone doesn’t like me and has decided  I am a flippant idiot. He is very serious. I am very nervous. He shows me how to put on the splint, and tells me to try. I am shaking slightly. He raises his voice.

“No, no,no not like that”

I am a Professional woman, a mother of three in her late thirties. I am not used to being told off like a naughty child.It makes me shake more. I can’t get the damn thing on her foot. Once it is on and I have been suitably humiliated, I am told that I will have to go and buy shoes to go over the splint. Pearl only has one splint,but she can’t weight bear in it without shoes.

I enter Clarks (other shoe shops are available) I am by now in a bit of a state.I take my ticket and wait my turn.The assistant comes to measure Pearl. I explain.The woman looks at Pearl, and  is afraid. She a grown woman is afraid of my non toddling, toddler and her splint.

“I think you will have to make an appointment and come back”

Suddenly shaken back by her reaction into a state of near aggressive assertiveness, I refind my voice .

“Look I am finding this very difficult and I am very upset.She needs shoes, you fit shoes and we will work out together how to do this.The clinic is local and she is not going to be the only child who comes in here needing splints”

Wisely the woman gets a general grip and helps. We have to buy two pairs of shoes-TWO PAIRS, because now Pearl has two different sized feet.It’s alright according to the shop,as they will give us a discount which means that the pair will ONLY come to £50.

So my lovelies what can we learn from this experience?

Mothers and Others

Carry tissues.

Wear waterproof mascara.

 Professionals

Support parents when medical equipment that visibly separates their child from their cohort is required. It may be clever scientifically, it may be part of your working life, but the fact it has a pretty pattern on it does not make it easier.

Start working on training local shoe fitters.

Advise parents on the right style of shoe to go over splints.

Tell them the why.“We are fitting splints in order to enable her to have a straight foot and a flat base for standing.They are also needed to ensure her foot does not become twisted as it grows and to encourage a good muscle stretch”

Tell them the when.”she will need refitting as she grows and may need to wear them for extra support all her adult life, we will keep reviewing and keep you informed”

Tell them the how.”When she needs new splints speak to her physio”or “we will review in 8 weeks”or “here is our number phone when she needs an appointment”

Keep your interpersonal skills honed.

Oh (and a personal bugbear) link up with a medical charity working in developing countries so that splints,shoes and gaiters that are often barely worn can be reused and not go to landfill.

Thank you.

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Summertime sadness.

In which the summer seems never ending,a biddable girl shows her assertive side,and her mother fails to step up to the plate.

The six week holiday is over,  a collective sigh of relief can be heard from homes all over the country.

A summer holiday with Pearl is generally trying. We spend the first week being bad friends. Pearl expects me to provide  days full of excitement at least as interesting as school. I expect to be able to continue with work, tidying and writing in much the same way as I do in term time. We are both stubborn and unreasonable. Oh, that’s not quite all. Every holiday I have two noble aims. Firstly I will toilet train Pearl. Secondly I will teach her how to speak. Pearl has been in the school system since the age of three. Every single holiday since then I have had the same aims. I have clearly learnt nothing from this experience. Neither has Pearl.

This holiday has been particularly difficult. I ditched the goals in the first week (there was a lot of wee). In retrospect reducing my antidepressant dose was not well timed.We did however do some amazing things (In the Night Garden Live anyone? At least as enjoyable as Benedict Cumberbatch in Hamlet last summer. Truly) I however struggled.

I had plenty of Direct Payment money saved, for plenty of support from Pearl’s two awesome  Personal Assistants, but I struggled. I was tired, so tired. Nine and a half years of special needs tired. Mr Pearlie J and I went away together overnight, child free .Still I struggled. I just did not want to come back. Pearl went out with her PAs. I did not want her to come back.

For the first time in ages I lacked flexibility, I was tired, I hated myself, I hated my life and I struggled.

Pearl I suspect is prepubescent (Worms anyone? They’re tinned) I am well into an early menopause. This is a heady combination. Being Pearl, full of hormones, cognitively challenged, full of self esteem and non verbal, led to kicking, stamping,  shouting and biting. Independence fostered at her fantastic school resulted in tremendous attempts at achievement any time I left the room to do anything as ambitious as going for a quick wee.Things were spilt, fallen off, broken, and rooms generally trashed. I most fabulous and patient of women,  had none.

If you are possessed of an assertive young person of differing ability things cross your mind when meltdowns occur.

Is she autistic like her brother?  How do I  know?   Would knowing help?

Does she hate me?

Do I hate her?

When she is 46 will she still be doing this?

Is she in pain?

Is she regressing?

How will she cope with puberty when it properly arrives?

Will any of us survive until September?

My default response to these thoughts, which race harum scarum through my head at a mile a minute is a good healthy dose of denial. This holiday someone appears to have taken my denial, and its helpful assistant emotional resilience. I only hope  they had much joy with them.

Our holiday for me was characterised by  a beautiful picture of Pearl I shared on my Instagram page with the following post.

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“This is the proof of the lies that Instagram tells. A beautiful picture of a glorious child taken by her stylish mother. Pearl and I left the house early, dog in tow for a secret trip to Beadnell Bay. I’m such a great mum! Pearl wanted to walk from the car, despite not wearing AFOs (splints) just crocs. She feel over, screamed, I manhandled dog, buggy and screaming dervish onto beach where she continued to scream repeatedly. At this point I noticed that she had horrible dental caries on a back tooth she never lets me brush. Feeling super crap at parenting I encouraged her to play in this hole, she calmed down, I took this picture. This was followed by renewed screaming as the sand had got into the graze, which was much worse than I realised. Bundling dog, 3 wheeler and screaming childback into the car I winded myself on a kissing gate.

Tomorrow I am putting her in bed with Dad and an iPad, while I go out for a run. Alone.”

 

On the morning Pearl went back to school,my shoulders moved away from my ears a good five inches. I missed her. I loved the fact I missed her. All the guilt and anger and fear faded away. When I look back over the holiday I know I will remember the stand out parts, not just the stand out tantrums. I’m mindful of another special boy, who did not make it through the holiday, and hold my bossy, sassy, tiring girl a bit tighter.

I remind myself how far we have come. Pearl is learning. She has changed. We do love each other, oh how this child is loved! She will learn and grow and change again.She is just 9 and her body is getting used to growing into her future womanhood.

These tricky times will be got through. Like the endless holiday, this too will pass.

 

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Rear Window

In which the state intervenes in the parenting process,but fails to offer any sense of direction.

Imagine this. A bright room, full of children and toys. A one to one adult to child ratio. Music. Paint. Glitter. Lovely.

At the rear of the room a large mirror. I am sitting invisibly on the other side. It’s dark. There are a lot of other parents of various shapes and sizes I’ve never met before. I can see Pearl, she can’t see me. I can’t help her. I can’t touch her.

For an hour and a half adults neither I nor Pearl know, interact with her and the other children, in a variety of ways. They play, they question and touch her. They also occasionally share knowing glances with each other. I have 18 months of experience of what Pearl can or can’t do, and how best to help. I can see through the glass when she has not understood, even see when biscuits are being given out and Pearl is asked “Do you want a biscuit?”, “eh” (yes) the reply. She is asked again,replies again.The TA looks exasperated and asks again. Finally the Occupational Therapist who was looking at another child’s hand control intervenes  “Pearl said yes”.  A beat. “Well I can’t understand what she is saying”replies the TA-who disappears mysteriously in the weeks to come. I sit on the other side of the glass, invisible and shrinking into myself. The parents of children with Down’s Syndrome have formed a group, two other parents who have loud opinions on everything are holding forth in a corner. I am slowly reducing in size, wanting to pound the window, pound the TA’s head, feeling utterly disempowered.

This may sound to you, gentle reader, like a hellish dystopian future where the state judges, you, your child and your parenting. It is in fact The Child Development Centre.

As Pearl’s difficulties became more pronounced, and as the Professionals utterly failed to recognise what a beauty and genius she was, we had somehow accessed an open play session at the CDC. We arrived once a week to play with the children, have access to therapy services to ask questions, and chat.

It was fun. Pearl and I were speedily fast tracked into the CDC proper, which is where you find us. Fun and soft observational assessment were quickly replaced by standardised tests,sessions with all the therapists and a growing sense of desperation. I have since found out that the children who attended were thought to be the ‘worst’ in the county. The one redeeming feature for me was the presence of our amazing physio, who continued to provide appropriate exercises, useful suggestions, and spoke to me like an equal. Apart from this I’m not sure what the CDC was for. I had briefly thought that Pearl would receive the golden “early intervention”that would cure her and get her back on track to join her peers, but as the months went on this seemed less and less likely.

What did I gain from this early intervention then?  Well I found out about Disability Living Allowance. Although there were in session, two specialist TA’s a Special Needs Teacher, an Occupational Therapist, a Speech Therapist-the person who told me about this was a parent behind the mirror. I met a ridiculous continence nurse,  who came to give us everyday advise on potty training, and seemed peeved, when a few of us explained that we did not see it as a priority as our children could not walk, talk or sit up on a chair let alone a potty. Later it was another parent who told me that we would be eligible for nappies-not mentioned by the continence nurse. Nobody would advise me on what would happen to Pearl as far as nursery or school was concerned-because it was not their decision. In the end another rear window parent told me about a School for Parents  in the adjoining county, which Pearl eventually went to before being accepted into the attached school.

In a sense then I did learn something about Special Needs Parenting. Firstly that no one would tell you anything, that you would have to find out for yourself. That other Special Parents could offer incredible support and point you towards resources. That some parents operate a kind of reverse competitiveness “oh she sleeps through the night, lucky you, mine doesn’t sleep AND has fits AND is autistic AND has reflux AND… but she did start walking at 18 months so I expect yours will too” Avoid these parents at all costs. In retrospect I can see this was a coping mechanism, but never let someone else’s coping mechanism interfere with yours.  Just don’t. Hopefully these parents found their tribe. I found mine and met some parents whose coping mechanisms involved coffee, cake and dark humour. I also met our current Paediatrician who is just wonderful, got Pearl and us, and begins every report with “what a delight it was to see Pearl in clinic today”.

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So Child Development Centre Professionals and your ilk, what would I say to you?

Don’t become overexcited by the assessment process and forget the child.

Don’t congratulate yourselves on providing “early intervention” if the parents don’t know the purpose or see the outcomes you are working towards.

Use your common sense about human interactions, introduce a group of parents to each other before putting them in a darkened room together, perhaps use this time to lead a group looking at resources or an introduction to Makaton.

Remember that in these early stages many parents will be in denial. Others will be overwhelmed. Do not assume that they will take everything in. Tell them your plans.Tell them again. Tell them again. Write it down. Put it in a handout.

Make sure your TA’s like children.

Explain to each parent why their child is in the group and what you hope to achieve. For example “because they are struggling in some areas we will assess and give you ideas to help at home. We aim to put together information that will form the basis of an individual plan to help them on the educational setting, we want to involve you every step of the way and help you decide what kind of a plan and setting would be most appropriate for your child”

Check that parents know all about support available, do they have a social worker? Do they receive  the relevant benefits? Are they accessing hydro therapy?  Do they have appropriate seating,  adaptations?  Do not EVER for one minute assume that these things are already in place.

Do not forget, DO NOT EVER FORGET, that parents can see EVERYTHING through that mirror. They can see if you are exasperated with their child, they can see if their child doesn’t like you. They can see and hear if you are talking over their child and ignoring them. Treat watching parents like you would an Ofsted inspector. Show them your working, planning and best practice, and then do it again the next week, and the week after that, and keep right on doing it. These parents are your partners.These children deserve it.

 

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.