How Not To Parent.The Summer Holiday Edition.

Originally written for Firefly before the summer holiday.Do you know what?We survived!

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This post was originally published on Firefly Community. Hop over there to see the original, and to read loads of other amazing blog posts.

Over the past eight years I have been taking part in a social experiment called the School Summer Holiday.

It appears to be a double blind trial, I have no idea of the results, the purpose of the study, or which group I’ve been assigned to.

Foolishly believing I had firsthand experience in this area, with two older children, I volunteered, only to find that nothing prepared me for the special needs version.

I do not appear to be able to ‘withdraw from the study at any time’ which I’m pretty sure breaks medical ethics, but I’m not clear who I can complain too.

I offer this then, dear reader, as a template of how not to plan for the summer holiday with an additional needs child.

Look at Instagram. Behold the beauteous horde, resplendent in their immaculate houses.

Marvel at the amazing places they take their children on a daily basis. No Lunchables or MackyDs for these families, even the chicken nuggets are home made.

Keep them at the front of your mind. This is what your holiday can look like.

Remember all the improving therapies you should be doing with your child. I’m not talking about the maintenance stretches, chest physio or medications you already do on a daily basis.

You have a 6 week period of ‘block therapy’ ahead of you.

I personally always start the holiday with two aims, firstly toilet training small person followed by teaching her how to talk.

Sometimes I write a structured plan to follow!

Remain positive at all times.

Remember the Daily Mail does not like Slummy Mummys. Who are these ogres, I hear you cry?

Why women who sometimes find parenting difficult and attempt to use humour, honesty and peer support to get through. Do not be like these women.

It is imperative that you glide swan like through the summer holiday, and that you push any feelings of sadness, worry or failure, deep, deep down, and hide them with a well-made up smile.

 

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I have followed these guidelines so you do not have to .You are most welcome.

I can tell you now that they are ill thought out, unsustainable and do nobody any good.

This holiday I aim to make sure we are all clean (enough) and fed.

I will smell my child’s head at least once a day. I will ensure the iPad is thoroughly charged.

We will meet up with some other parents who are in the same tribe and have a whinge, a laugh and some fun.

We will go outside and get fresh air, and also treat the Supermarket as an exciting place to visit.

I will not feel guilty that I hate swimming. I will lower my standards.

We will muddle through.

Oh. And I absolutely will not use this new list as a measure for success.

Good luck all .

See you on the other side…

 

 

If you find caring challenging check out the resources at Carers UK for support and community links.

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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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