Category: Communication

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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