Wonky Genes. Rare Disease Day 2018

Eleven years ago an event occurred that made me Mother of Pearl.

A home birth, relatively easy, despite traffic problems meaning no pain relief at all.(Pause for standing ovation)

This beautiful third baby took us on a journey of discovery, to see if we had what it takes to join the Special Parents club. Fortunately it appears we did, which is just as well.

Nine and a half years of alternative reality later we finally had a diagnosis.

Join me on a normal morning in our household.

Six a.m. the alarm goes off. Father of Pearl is in Barcelona,with work. (Having had a full week of half term already, I was delighted to receive pictures of Gaudi’s world famous architecture while child wrangling)

Pearl is already awake and shouting loudly (she is non verbal-but vociferous).

I change her wet nappy, bung her a breakfast biscuit and an iPad,jump in the car to take her older brother to the bus station for college. (Before you phone social services her older sister is home from Uni and holds the fort.)

Back home, up date the Home School diary with the events of the half term week-forgetting to include the fact that she fell once or twice a day over the holiday, explaining the purple bruise on her behind. I should have mentioned the scratch on her tummy too, but forgot until now. I daresay there’ll be a note.

Pearl proceeds to climb into my bed with iPad (other tablets are available)  as I explain that it is no longer the holiday and she has to get dressed.

Pearl is famously bad at transitions and despises having clothes put on.The tights are OK, but something is very bothersome about the jumper and it leads her to throw herself on the floor and weep big fat, slightly over dramatic tears. After a debrief, several cuddles and a face wash we go slowly down the stairs. Slowly because as she gets taller (about 5ft now) her legs are becoming less and less predictable. I have to go down in front of her backwards. Also slowly as somehow we have got into the unwise habit of her throwing herself into my arms and biting my left shoulder, before signing sorry and cuddling and kissing my right shoulder. I do not know how I allowed this to develop,  but it has and it is what it is.

We have by this stage, left a trail of pyjamas, unmade beds, dirty nappies and breakfast biscuit wrappers behind us.We have ten minutes until school taxi arrival time. Fortunately she has got out of the right side of the bed, and sloughed of the dreadful dressing experience and allows me to brush her hair, without the need for us both to have counseling (this is remarkable)

Five minutes to get her into splints and shoes-and she doesn’t kick me in the face today-bonus!

A big kiss and she lets me put on her coat, and makes no fuss at all about leaving the house for the taxi. It is a good day indeed.

 

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Despite the relative ease of the morning as I’m clearing up I reflect on rare diseases and how this one effects our family.

Pearl has a novo mutation on GNA01. This was discovered by the Deciphering Developmental Delay study, which we took part in as a result of SWAN UK.

SWAN (syndromes without a name) is part of the Genetic Alliance, and provides support to families with children who despite a myriad of difficulties have no known diagnosis.

GNA01 does not describe Pearl’s difficulties but the gene change that produced them. It is a novo mutation, as it is new, and happened by chance during her development in utero.We did not pass it on, and statistically Pearl’s siblings are no more likely to pass it on than we were. Her geneticist did not spot it as Pearl was not particularly similar to the wider cohort of children with it.

Pearl’s difficulties, include epileptic seizures. These are rare for her and well controlled by a vary low dose of medication. Not so in the wider cohort, where seizures can be frequent and hard to tame. She does not display the uncontrolled and random moment disorder displayed by the majority of the group.She has an ataxic gait, walking  (as one Orthopedic Surgeon who went to the Bernard Manning school of tact) like a drunken sailor. Her centre of gravity is all over the place and her muscles are unpredictable, increasing in tone when she grows, while also unexpectedly giving out and causing falls. She has no recognizable speech, although she uses yes and a head shake, plus her wonderful PODD communication book. Severe learning difficulties, double incontinence, global developmental delay, poor fine and gross motor skills and a bit of autism complete the picture.

Luckily neither this list, or her diagnosis define her.

She is observant, funny, loving, thoughtful, stubborn, self possessed, strong willed and has a ridiculous sense of humour.

So what has Rare Disease diagnosis meant for us? If it isn’t who she is what its the point?

Well it has given our children peace of mind about the chances of passing it on.

We are now part of an online community of parents with children with the same condition, we can ask questions, share stories and see what the future may look like.

Most importantly we are taking part in fact gathering for the next generation of geneticists, parents and Pearls about how the disease can look.

There are thousands of children out there with Rare Diseases and no easy answers, further research is needed to smooth the way, provide evidence for therapeutic intervention.give support to families and arm the professionals with information to pass on.

It’s Rare Disease Day. I love someone rare and she is quite magnificent.

 

 

 

 

 

A Poster Girl for Disability

This post was originally published on Firefly Community. You can see the original here

 

Years ago, we had a disastrous meal out. Pearl was present but not yet born, perhaps my reactions to it were coloured by the 8 months of pregnancy hormones sloshing around my body.

Four of us, Father-to-be of Pearl, a small Rab and preteen Glory on holiday. Visiting a highly recommended gastropub. A treat.

 

As this is not trip advisor and was eleven years ago I shan’t share the location.

 

The manager did not seem keen on customers, the service was at a snail’s pace, nothing on the menu appeared to be available, and according to F-t-boP, the floor in the mens toilets was not safe for sandals wearers. Lovely.

 

As we sat fuming a couple arrived. A man, in a wheelchair with a neurological condition, and his partner. As we longed for distraction from the diabolical service, and we are inveterate people watchers, we were fascinated to see him using his computer to communicate. Ten years ago this was even more unusual than it would be today.

 

Of course, I mentioned it to the children, I was a Speech Therapist who specialized in neurological conditions, it was a break from moaning about the service, and it was educational.

 

After an argument about whether ice cream was available on its own, as well as with apple pie, we paid up, relieved to be escaping. The children got up and ran over to the couple and stood smiling at them shyly and looking at the computer. I quickly joined them

 

“I’m sorry they are interested in your communicator”

 

Mrs. scowled angrily at me.

 

“We are trying to eat”

 

We left, tails between our legs, a horrid end to an awful trip.

 

I’ve thought about this incident a lot since having Pearl. At the time I was deeply hurt, couldn’t they see we were really interested and trying to make a connection? Now I think I was probably unforgivably ableist.

 

Does every trip out for a disabled adult or child have to be an educational experience for society at large?

 

Do ‘the disabled’ (and if you hear anyone refer to a people group in that way, draw your own conclusions) have a responsibility to be charming, well presented, and approachable at all times? Should they be expected to represent not just themselves, but the whole disabled community every time they venture out to the supermarket? Hell no.

 

Personally I want the freedom to be messy, tidy, made up, fresh faced, happy, miserable, charming or sweary as the mood takes me. If I become disabled (and a fair percentage of us will, through ageing alone) I don’t think that is going to change.

 

The first time we had personal experience of this was during Pearl’s statementing process. I was speaking to the lovely Educational Psychologist and telling her I was fearful that Pearl’s mainstream nursery would struggle, as they had no experience of disability.

 

Her response, that it would be a very good experience for all of them, was no doubt true, but not what I wanted to hear.

 

‘I don’t want her to be a poster girl for disability, I just want her to be a little girl”

I told Father of Pearl when I got home.

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Like it or not, wherever we go, whatever we do, we do attract interest. Admitedly this is added to by Pearl patting people on the shoulder or grabbing women’s handbags (I taught her well…)

 

So how do we deal with it?

 

I do not want to sit at home avoiding stares and questions. Nor do I always want to explain Pearl’s communication book or diagnosis, but I would rather she was out there in the world, than tucked away out of sight.

 

I suppose a balance has to be struck

 

A wise researcher once asked me what I wanted the world to be like in terms of inclusion.

 

“A CBeebies world” I answered.

 

Shortly before Pearl was born, thanks largely to Something Special and Mr Tumble, different abilities have been very well represented on childrens BBC. In all CBeebies programmes there is a huge range of children, glorious to behold, with frames, crutches, white sticks, hearing aids and all manner of genetic conditions. Graduate to adult TV and there are articles on how inclusive this soap is to have this or that actor, with a disability. Not on CBeebies. They are just there. No fanfare, no overt educational message, just included.

 

That in the end is what I want for my Pearl, her friends and the Pearls of this world.

 

Not the constant requirement to be an ambassador for disability.

Acceptance.

Inclusion.

A CBeebies world.

 

 

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The Kindness of Strangers

In which we meet an unexpected angel, unawares.

 

This post originally appeared on Firefly Community and you can find the original here

Christmas this year was a bit of a wash out.

In the seven-week run up, our house had become a breeding ground for all kind of viruses.

All of us (bar Pearl) had flu, colds, infections and stomach bugs, with hardly a day off in between.

I couldn’t exercise and found (who knew?) that if you eat more than usual, while doing precisely nothing your clothes inexplicably shrink.

It was with some relief that January and better health rolled round. The first hospital appointment of the year, on the second of January, seemed like a return to normality.

 

As Pearl grows older it seems likely that she has a degree of ASD in with the mix of physical, cognitive and sensory problems. She is very routine dependent and her understanding is very experienced based.

We are well used to seeing Pearl’s marvellous orthopaedic surgeon, and Pearl is usually very cooperative. We park up, she gets into her wheelchair (it’s a long walk from the car park to outpatients).

 

The first working day of 2018 was different. Pearl’s kaye walker (a kind of a walking frame on wheels) was just visible in the back of the car. On the hour-long journey, she insistently pointed at it and shouted.

“Do you want to walk when we get there?”

She deploys her only recognizable word.

“Yeah”

“OK. We’ll see if we have time.”

How blithely I make this throw away comment.

 

We arrived. There was time. Pearl was insistent.

 

Now usually when I say Pearl goes in the wheelchair, actually we go straight to the shop and buy fruit and a biscuit for distraction purposes.

 

Pearl set off in her walker. I hadn’t realized how much she’d grown over Christmas and it wasn’t providing her with much support. At some points she was carrying it around her. It was frankly not ideal.

 

 

 

After getting to the front of the hospital with some difficulty she stopped and signed biscuit. We still had at least another 5 minutes before even entering the hospital, let alone booking in and getting to the clinic. I looked at my watch.

 

“I have some biscuits with me” (I was a Girl Guide and the motto, “Be Prepared” is engraved on my heart)

“We’ll have them when we get to the waiting room”

This is clearly not the right answer. Screaming, suddenly and out of nowhere, starts. Proper blood curdling, being murdered screaming, emanating from my usually biddable and cheerful child.

 

Now I’m in trouble.

 

Is she in pain? It is a long walk,the walker isn’t supporting her.

Is she expecting the biscuit we usually buy?

Is she suffering sensory overload? A lot of people are leaving the hospital and streaming past us. It is very noisy.

 

Or is she just in a bad mood?

 

I have no idea, I can’t use her PODD communication book because my hands are full of the stuff we might need for any and every eventuality. I can’t take her back to the car for her chair, it’s too far and we’ll be late. Pearl will not move an inch forward and now she is grabbing random passing strangers.

 

It had all been going so well.

 

Suddenly a woman with blue hair, piercings and fabulous boots walks straight towards us. I get ready to stop Pearl grabbing her, when this stylish angel looks straight at me and says

“Can I help?”

 

This is only the second time this has only happened to me in eleven years and thousands of meltdowns, so I’m a little nonplussed.

 

My immediate, and rather pathetic response.

 

“I don’t know. I’d love some help, but I don’t knowvwhat’s wrong, I don’t know what you could do”

Resourceful. I know.

 

Then the inner Girl Guide kicks in. I have an idea.

 

This amazing stranger agrees to stand with a completely hysterical child while I run back to the car, at some speed, for the wheelchair. I explain all this to Pearl, who is really beyond hearing at this point. I check again with this magical apparition.

“Are you sure?”

She is!

I leave them with the the emergency biscuits and make a run for it.,

In the distance I can hear her, gently explaining.

 

“Mum will be back in a minute. Would you like a biscuit? No? You want a hug?”

I turn to see Pearl fling herself into this persons arms and sob messily on her shoulder.

 

When I return, she is still cuddling a calmed Pearl and speaking to her with great gentleness.

 

This extraordinary individual then proceeds to apologize for not knowing how to help Pearl into her chair, which is really not a problem at all, and suggests she stays with her while I take the walker back to the car. She does.

 

By the time I return, everything has returned to normal.

 

Biscuits have been consumed, legs are rested. All is well

 

So, when a blue haired angel appears on the front drive of Stoke City University Hospital, how do you show your appreciation?

 

She deserved an Oscar, a Damehood, at the very least a cup of coffee, but we had an appointment to attend.

 

Instead I touch her arm look her in the eye, and say.

 

“You have no idea how grateful I am for your help”

 

“S’alright, no bother”

 

She smiles, turns and fades into the crowd.

 

So, oh stylish one, wherever you are, whatever your experience that led you to help this child, on this day, I thank you from the bottom of my tired, overwrought mothers heart.

 

You saw through all the screaming to exactly the wonderful  person my small girl is.

 

Saw through all my attempts to remain calm and capable to exactly where I was.

 

For this I salute you, and will never forget you.

 

Thank you.

 

 

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Pearls of wisdom

In which singing and dancing saves the day.

This post was written for Firefly Community,the original can be found here

 

I have long thought that life could only be improved by spontaneous bouts of dancing and singing.

I mainly blame my mother for this tendency. I was exposed at a tender age to every Hollywood musical known to man.

 

Family members were routinely subjected to yearly attendance at a 3 hour pantomime.

 

My dancing teacher was a huge believer in inclusion. Ability and talent mattered not a jot. Everyone should have a chance to shine. Everyone. It was quite a large dancing school. She was not gifted with editing or quality control skills.

 

Apart from giving me a lifelong fear of amateur dramatics, because of resurfacing guilt, it has only reinforced the feeling that singing everything is definitely the way forward.

 

Fortunately, my family tend to agree (the slow drip approach of brain washing works well I find).

 

Pearl’s school is run on Conductive Education principles, which rely on repetitive movements paired with simple repetitive songs. The die is cast. Entering our house is like a second class, badly written version of Calamity Jane (which is, incidentally, also what I’m considering changing my name to)

 

On the naming front, I can highly recommend calling your child Pearl. It is relatively unusual, meaning naming labels don’t require a surname. Pearl is remembered and her record easily traced by all hospital departments, as they don’t tend to have another under the age of 80.

Most importantly Pearl  is easily replaced in songs.

 

“I kissed a Pearl and I liked it”

 

“My Pearl’s mad at me”

 

You get the picture.

 

And then courtesy of Elkie Brooks she has a song of her very own. (“Pearl’s a Singer” for anybody under 40). Pearl does indeed often “stand up when she plays the piano”

 

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The lyrics can be changed on uncooperative days to

 

“Pearls a whinger”

 

I hope this is character building, it usually distracts her and makes her laugh. Whatever gets you through the day.

 

I have recently been ‘enjoying’ a particularly long-lasting flu virus with a very bad grace. In the middle of this a cock up from our Local Authority, landed me with a call suggesting that my nonverbal, doubly incontinent child could have her secondary education effectively provided at our local High School. The same High School that had been unable to cope with our articulate, high functioning, academically able, son with Asperger’s. It seemed unlikely (yes really!) for this placement to be successful. I had in fact attended a two hour meeting a fortnight previously where I had discussed and agreed the perfect setting with a Local Authority staff member. I was not happy.

 

Incandescent rage goes some way to describing the way I reacted to the news,

and was apparently a good negotiating tool, the problem was quickly resolved.

 

Entering Pearl’s bedroom the day after this fiasco, and still feeling lousy I was greeted with charm, panache and a cheery hello (one of two of her recognizable words) She was warm, giggly and cuddly the perfect, cheering, combination.

 

As I began the usual, dressing and washing procedure, which is not without its challenges, all I could hear in my head was a paraphrased JayZee.

 

“I’ve got 99 problems but my Pearl ain’t one”

 

Life with a disability can be a struggle, but it is often the environment the lack of support, and the daily grind that is disabling. Filing cabinets of admin and frequent appointments can really leech the joy out of your life.

 

A friend of mine not in the Special Need Parents Club, looked in fear at the severe and complex disability and health needs of a mutual friends disabled child.

“But what does she think when she looks at him?”

She asked.

 

I thought of the Mother/Carers face when she looked at her son, full of love, knowing, and shared stories.

I think she usually thinks “That’s my boy” I replied.

 

And on days when love isn’t enough and the physical and emotional strain and reality of Caring is overwhelming, there’s always song.

 

I’ll see you Somewhere over the Rainbow, the skies there, well you know the rest.

 

Until then So Long, Farewell, Auf Weidersehn, goodbye.

 

 

 

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Property.

In which Pearl #ROFLs and Phil Spencer diffuses a meltdown.

Accessibility is a big issue for us in Pearlie J Towers.

The smallest one has some independent mobility, but is limited,and is likely to become more so as she grows.

We have made some simple fixes to improve things, a grab rail here, a bath step there.

For the last two years we have been wondering, how can we future proof this place?Should we move?

Helpfully Channel 4 programme,  Love it or List it  deals with just these issues. Presented by go to property experts, Kirstie Allsop and Phil Spencer, property owners decide should they stay and renovate, helped by Kirstie, or sell and move, supported by Phil.

The added jeopardy which is needed to make the show viable is that one seller wants to stay, and one wants to leave. For added excitement Kirstie and Phil are pitched against each other. I am giving nothing away by saying Kirstie nearly always wins, the houses are transformed, moving costs are saved, and Kirstie roundly berates Phil for being a loser.

But today in my house it is very much all about the lovely Phil Spencer. He is definitely the winner (sorry Kirstles).

If you have a child with Additional Needs who has meltdowns let me tell you about the Phil Spencer method of resolving the situation.

Series  3, episode 1.  Really pertinent as one of the buyers has reduced mobility.

Picture the scene. Father of Pearl and I watch with interest while Pearl, less interested in property porn than us, plays on her iPad.

The house in question has a tiny upstairs toilet behind louvred doors. Phil decides to hide in the toilet. Kirstie after 17 years of partnering him is not fooled. She slowly advances up the stairs “Phil are you in the loo?”

Pearl’s iPad is dropped. Three of her favorite things are about to coalesce. A sense of anticipation, toilet humour and hide and seek.

As Kirstie approaches the top of the stairs the small one giggles in anticipation. (It has suddenly occurred to me that the scene is almost a complete reversal of the “Here’s Jonny” scene in The Shining, with added toilets and no axe)

The louvred doors burst open to reveal  Phil sitting  (oh the humanity) on the toilet.

 

You may never have seen Pearl laugh. When she is really tickled, physically or mentally her muscles tighten, her eyes close, she stops breathing and emits a slow squeal. It is utterly contagious and we all spend an inordinate amount of time trying to provoke it.

Pearl’s reaction to Phil Spencer sitting on the toilet fully clothed, was totally, totally splendid. She cried with laughter, she squeaked, she squealed, she had to be reminded to breathe. She actually threw herself bodily from the sofa and rolled about on the floor, laughing.

 

Of course we replayed it immediately, and like all classic comedy it did not grow old. It was simply marvellous, we taped her, we taped it, we had it on file for posterity.

This morning during school preparation something upset my lovely girl. I am not sure what  as intervening with PODD or using yes/no questions was not even a possibility. (Oh the joy of a non verbal child) Pearl was beside herself, welded to the sofa, the taxi had arrived, fat tears pouring down her cheeks and muscles tight with upset. Something (possibly my refusal to let her have a Creme Egg for breakfast) had gone very wrong. The taxi was waiting, she was having none of it.

I saw the iPad and wondered. Would it? Could it? Could the suave charm and sheer comedy timing of Phil Spencer save the day?

Tentatively I pressed  play. Kirstie started up the stairs, Pearl’s tears continued. The taxi was still waiting.It wasn’t going well. Suddenly the louvred doors burst open and there he was, the Man of the Moment sitting in his glory on the loo.

This proved irresistible for a child with a finely honed ear for comedy, the mood in the room changed. The tears astonishingly stop. Pearl begins laughing and decides she must share this comedy gold with her Taxi Driver and Escort.

No matter what happens at the end of subsequent episodes of Love it or List it, no matter how many houses Kirsty radically transforms, know Phil Spencer that you are the winner in our house, and your magical ability to get my daughter on the school taxi this morning is  something I  for which I  will be ever grateful.

Oh and we  have decided to List It too!

 

 

 

 

 

 

 

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Oh, The Places You’ll Go.

In which a change is as good as a rest.

Going on holiday with my gang of miscreants is not an easy task. A friend of mine with small children describes her holiday experiences as “same sh** different location”In an effort to avoid this we have tried a number of things.

Air travel is currently out.Father of Pearl is properly afraid of flying.Valium helps.
Pearl doesn’t do queuing and waiting, the idea of wrangling her and a 6′ 4” gibbering drugged up wreck through an airport and onto a plane is less than appealing. The Glory flies off to extraordinary places with Guiding.The Gambia and Copenhagen have both been on the list-I’m hoping if I stay on her good side we can go away together in the future.

Rab shows a typical, non typical, resistance to change.He can do holidays if he knows where we are going, how long the journey will take,what time we’ll leave, when we’ll arrive  what his room will be like and a rough itinary of the break.He doesn’t like them and is usually desperate to get home.Both teens (and F o P) NEED wi fi.Obvs. I’m a dinosaur and just need lots of books.

We also require flat access, downstairs bedroom for Pearl if at all possible and a flat outside space.

This leaves us with the following options.

Stay at home. Forever. No surprises. No changes of routine, and the real possibility of infanticide.

Choose the same, or similar places. And this brings us to the reason for this blog,a short, non sponsored paen to the place that everyone in the family loves and a big thank you to those who work there.

We have just come back from Center Parcs. We love the place. It is not a cheap holiday alternative, but what it offers us is perfect for everyone.For reasons I cannot begin to explain(and nor can he) Rab loves it.It’s familiar, the villas are the same. We did, it’s true, have a slight wobble, when he realised this time our villa was “the wrong way round”but as he’s 16 and was aware it was the autism speaking he bravely overcame having the living area the wrong side of the kitchen.

In the car on the way to Sherwood Forest the 18 and 16 year olds regressed to being about 10,hitting each other shrieking and laughing, they say this was to amuse Pearl, (it did) but it’s actually the effect of going to Center Parcs that causes it.

If you have never experienced this place I’ll explain. It is a large,managaged forest.There is a variety of accommodation, close together, but orientated so that you have clear views of your surroundings and aren’t at all overlooked.There is an amazing huge swimming pool, sorry, “Sub tropical Swimming Paradise”, with flumes, wave machines shallow pools, this is all included in your stay. There are a massive amount of bookable activities that you pay extra for and can take or leave at your leisure. In the past we have done aerial wires, roller blading,flown hawks, watched owls, a nature walk, scuba dived, Bollywood danced, tried archery,hired bikes and played badminton.

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Years ago on a previous stay,The Glory learnt to ride without stabilisers there for the first time. That’s the other thing, when you have unpacked your car, all cars return to the car park and the site is vehicle free.It is possible to be mown down by a middle aged person unused to cycling, but on the whole it’s safe and easy to navigate,and fairly flat so Pearl can walk a bit.

This last weekend came with an ensuite swan.On opening the blinds in the morning he knocked incessantly on the window in the hope of food.I’d like to say that the teens didn’t give him my cereal, but I’m not entirely sure.This,and the gaggle of geese who appeared plus the squirrels, rabbits and moorhens made me feel like Snow White without the dwarves.Pearl was utterly enchanted and ready to feed them Doritos (she doesn’t like them) but was restrained.

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All human life can be seen at the pool, all ages, sizes,races and abilities.This makes holidaying with someone small and special easier, as you are absolutely not the only one.There are decent changing facilities with benches, and when the small person with you resists getting out of the pool and changing ,while screaming blue murder, you are sympathised with, and nobody calls Social Services, which is a bonus.

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“If I just climb into the wheelchair maybe they’ll take the hint and take me swimming?”

The staff really seem to enjoy their jobs, and most waiting on staff gamely took Pearl’s orders made with the help of her PODD book and came when she looked over her shoulder and shouted “haro”while jabbing at the food and drink page.

There are a handful of fully accessible villas, with wet rooms and hoists.We don’t presently need this, and knowing all the other villas were one storey, did book  a villa two stays ago, only to find it was up a steep flight of steps.Within 20 minutes we’d been reallocated something more appropriate.The moral is, an organised parent phones to book and mentions needs rather than doing it online. (I’m sure you all would have done that anyway).

This stay Pearl managed more in the way of walking and of climbing on soft play. We also allowed her an ill advised go on a steep slide in the pool-I went down to the landing area to fish her out, only to realise there were almost vertical steps to get out of the water. We did it once more (she loved the slide) before finally admitting defeat.

However the best thing by far was the World of Spa. Having taken advantage of the fact that Pearl was shattered by all the activity and can’t tell the time, we put her to bed at 5.30 (yes we did pay for it with an early morning) left the 18 year old in charge and floated, bubbled, steamed and relaxed our way around the spa for two and a half hours.It was awesome and I was so relaxed I went to bed as soon as we got back at 9.Which was just as well when Pearl woke up full of beans at 3.Maybe she can tell the time after all?

So Center Parcs,I know you are a large organisation, and our family are only a tiny handful of your yearly visitors, but a HUGE thank you from us for being, inclusive, fun, friendly and good at what you do.

Have you and your family enjoyed and inclusive accessible holiday with great service? We’d love to hear about it in the comments.

*STOP PRESS* We have been nominated for an award! The BAPs awards is a new award for bloggers writing about additional needs parenting.The Wrong Kind of Snow is a finalist in the Promoting Positive Perceptions category.You can vote here,  and do take a look at all the other awesome finalists too! Thank you.

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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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