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EXPLANATORY NOTES

The template that follows is based on a communication passport that was produced for an individual girl with Rett Syndrome. Some of it may be relevant to your own child, and some will not be. Some quite detailed descriptions have been left in to give you an idea of how you might go about describing things and what you might include. But it is only a starting point!

The contents list (‘Sections in this folder’) is of course adaptable – add or subtract sections in whatever way makes sense.

The pages are A5 size. They can be printed and put in an A5 binder to be put in your child’s bag or attached to their wheelchair, etc. This should make it easy to add and amend pages and sections as needed.

Hello.

My name is

NAME

PHOTO HERE

SECTIONS IN THIS FOLDER

SUGGESTED HEADINGS BELOW. PERSONALISE AS NEEDED.

About meo My familyo Things you should know about meo What people like & admire about meo Things you might notice about me

Communicatingo How I communicate

Likes/dislikeso What makes me happyo Things I dislikeo …And some things I really like

How to help meo How to help me if I am unhappy

Aids/equipmento Aids & equipment I useo How I get around – my wheelchairo How my wheelchair works

Daily routineo My daily routineo How I get dressedo Any additional sections as required (eg

My sleep support system, My physiotherapy programme, etc)

Eating/drinkingo Eating and drinkingo What I like to eato The tube in my tummy

Medicineso My medicines

Diagnoseso My diagnoseso What is Rett Syndrome?o What happens when I have a seizure

My hospital admissions

Important contacts

MY FAMILY

I live with [family members] in [place].

Here I am with my family.

PHOTO HERE WITH FAMILY

THINGS YOU SHOULD KNOW ABOUT ME

I am AGE years old.

[Introductory para if wanted]

I was diagnosed with RETT SYNDROME in/when I was [say when – year, or age]. This means that [AMEND AS REQUIRED]:o I can’t sit very well without supporto I can’t stand or walk at allo I can’t talko My hands don’t really work, and they

are often clasped or in my moutho I struggle to eat and drink, and have a

feeding tube to help me get enough food and liquid

o I need help with pretty much everything!

BUT I can understand you! My body doesn’t work very well and I need a lot of help, but I’m not a baby.

WHAT PEOPLE LIKE AND ADMIRE ABOUT ME

PERSONALISE AS NEEDED. EXAMPLES BELOW.

o My smile

o My eyes, and the way I can ‘talk’ with them

o My friendliness and interest in people

o My sense of humour – when something makes me laugh, like someone being silly, or a funny story, I have the most infectious giggle

o My determination to be heard, and to let you know what I want

o My strong opinions on what I like and dislike

o My extreme love of music, especially the piano

THINGS YOU MIGHT NOTICE ABOUT ME


Jerky movements in my upper body: The left side of my head, neck, left shoulder and arm sometimes jerk forward quite sharply. It can happen a lot on some days, and hardly at all on others. Sometimes I don’t seem to notice it much, and other times it really bothers me. It’s hard if it happens when I’m eating. If it does, try supporting my left shoulder with your hand.

Muscle stiffness: My arms and legs can be stiff, and I sometimes struggle to straighten them. My neck also gets stiff. The muscles around my mouth seem to get tight sometimes too, which makes it hard for me to eat and makes me cry.

Tremors: I am sometimes quite shaky, especially when I am newly awake.

Low muscle tone: I am very wobbly, especially around my middle, which makes it hard for me to support myself to sit.

Irregular breathing: I sometimes hold my breath involuntarily for a few seconds, especially when I am being transferred

from one place to another. This bothers me.

Hand-mouthing: I put my hands in my mouth nearly all the time. I don’t mean to do it – my brain just seems to tell my hands to go there, even if I want them to do something else.

Slowness to swallow my food and clear my mouth: I am really slow at clearing my mouth when I have been eating – it takes me ages! I should keep my arm-braces on for a while after a meal has finished, otherwise I put my hands in my mouth and there is mess everywhere. (See also the section on ‘Eating and drinking’.)

HOW I COMMUNICATE


I can understand what you say – but make sure that I am listening to you.

I will look at you when I want to say YES.

I will look away when I want to say NO.

My responses can be quite delayed, so please give me plenty of time to answer your questions.

I can make choices between things you offer me, by looking at the thing I want – but sometimes I am not very interested in what you are offering!

When I am really interested in something or someone, I will look right at it/them. You need to watch my eyes!

I have a very expressive face and you will usually know if I am happy and interested in something, or if I am upset. When I am happy, I do a lot of smiling and laughing.

You will also realise that I have a loud voice! I vocalise a lot, to indicate happiness and excitement – as well as

over-excitement, agitation, impatience or anxiety.

I will tell you that I have had enough of something by looking away, rubbing my face/eyes/ears, and protesting vocally.

I sometimes use an eye-gaze computer to help me play games and ‘talk’ – the computer has a small infrared camera that tracks the movements of my eyes, and lets me use my eyes like a mouse.

IT IS REALLY IMPORTANT THAT YOU KNOW THAT I CAN UNDERSTAND A WHOLE LOT MORE THAN I AM ABLE TO SHOW – SO PLEASE DON’T TALK TO ME LIKE I AM A BABY!

WHAT MAKES ME HAPPY


o Listening to MUSIC. My favourite band is Madness. I also love piano music and jazz (especially Glenn Miller pieces such as ‘In the mood’), and songs from musicals such as ‘Mary Poppins’ and ‘The Sound of Music’.

o Watching CBEEBIES. I like lots of things on CBeebies, but my favourites are Nina and the Neurons, Tree Fu Tom and Waybuloo. I particularly love the Fimbles and the Tweenies – you can find them on DVD or on my tablet. I also like ‘Shaun the Sheep.’

o Reading STORIES. I like Dr Seuss books, Charlie and Lola books, and books by Julia Donaldson and Roald Dahl. I usually prefer books that are about children rather than animals. I also like funny poems.

o Going out for WALKS in my wheelchair. I like to be on the move and to feel the wind on my face. (I don’t always like stopping.)

o Going on a TRAMPOLINE. (I have one in my garden at home.) I like to bounce

on my back or sitting up, with someone to hold my hands.

THINGS I DISLIKE


o Having things put over my head

o The sun in my eyes

o Being too hot

o Loud noises

o Physiotherapy

o WAITING for anything!

o Being ignored

o Being in enclosed, crowded places

o Too many demands at once – I prefer to focus on things one at a time

o ‘Baby’ books, with only a word or two on each page and too many animal noises

…AND SOME THINGS I REALLY LIKE


o Cuddles

o Babies

o Chocolate buttons

o Pianos

o Bubble baths

o Swimming pools

o Seeing my family and friends

o Chats with people who talk to me properly – I especially love it when people WHISPER to me

HOW TO HELP ME IF I AM UNHAPPY

Introductory para [Example: I am good at letting you know if I am unhappy, uncomfortable, frustrated or bored. But it isn’t always easy to tell which of these it might be!]

If I am in pain, I…[Example: I tend to make an unusually high-pitched sound, and to be a bit shaky. It is fine to give me 10ml of paracetamol or ibuprofen if you think I need it.]

Mostly I am unhappy because…[Example: I am tired, overwhelmed or have had enough of whatever I am doing. I give you signs like turning away, rubbing my face and wailing.]

The following things often help if I am unhappy or agitated [examples below]:o A change of sceneo A change of position (sometimes being

able to lie down for a few minutes helps me)

o TVo Time away in a quiet room (with music

or TV)o A cuddle

Any further description…[Example: I prefer to be given quiet time and space to feel better, and don’t usually

respond well to people who try to entertain me when I am tired and over-stimulated.]

AIDS AND EQUIPMENT I USE


Ankle foot orthoses (AFOs): I wear these all day to support my ankles and keep my feet straight and uncurled.

Arm-braces: I wear these to stop my hands going into my mouth – while I am eating, and when I am concentrating on activities at school.

Standing frame: I spend time in a standing frame most days, either at home or at school, to help me bear weight and to straighten my spine.

Sleep support system: I have a soft foam sleep support system to keep my hips and knees in a straight line while I sleep and stop my hips hurting.

HOW I GET AROUND – MY WHEELCHAIR

PROVIDE DESCRIPTION. EXAMPLE BELOW.

I rely on my wheelchair to move around.

I need to be lifted into my chair, as I can’t bear any weight on my feet. I then need to be positioned in it carefully, with my bottom right at the back of the seat, my head on the head-rest and my feet in the foot-plates. There are straps for my feet, which can be fastened but don’t have to be.

I have a tendency to lean to the left when I’m sitting. You will notice that the side supports in my chair are at different levels – the one on the left is higher. It is supposed to be like that!

I am hoisted in and out of my chair at school and at respite. At home, my mum and dad sometimes lift me.

HOW MY WHEELCHAIR WORKS

PROVIDE DESCRIPTION. EXAMPLE BELOW.

The whole seat of my chair tilts back easily, which is useful for positioning me in the chair (with my bottom right at the back) and for letting me relax a bit when I am tired.

To tilt the seat: put your foot on the pedal that is between the back wheels, and press down with the handle.

To put on the brakes: there are two brakes, one beside each of the back wheels. Please make sure that BOTH brakes are on, and that they are pushed as far as they will go, in order to hold the chair securely.

I sit in my chair on the school bus and other transport.

MY DAILY ROUTINE

PERSONALISE AS NEEDED. EXAMPLE DESCRIPTIONS BELOW.

I get up at:7.15am (school-days)8-9am (weekends/holidays)

I like to listen to music in the mornings while getting dressed and ready for the day. My favourite morning music is Madness!

When I get up:o Change my pado Give medicine through my tubeo Wash my face with a flannel (warn me

first!)o Brush my teeth (I use special

unflavoured toothpaste, as I don’t like the taste of mint, and I will usually open my mouth quite willingly once you ask me to)

o Encourage me to sit up on the bedo Get me dressed. Please see notes on

getting dressed.o Put a tube pad around my button (a

patterned disc with a popper, to stop the button rubbing against my tummy)

o Make sure I am wearing a bandana bib over my clothes, to protect them from dribble. I will need regular bib-changes throughout the day.

o Brush my hair and tie it back in bunches or a pony-tail or similar, or with a hair-band (I don’t enjoy having my hair fussed with – sometimes I cry a lot – so please don’t take too long!)

o Position me in my chair

Breakfast (see ‘Eating’ notes):Half a weetabix + half a mashed banana (or similar) with milk. Sometimes I have a blended breakfast through my tube.

I’m not usually very hungry for breakfast (as I’ve been tube-fed overnight) and I’m mostly unenthusiastic about it.

Mid-morning:100ml water through my tube

Lunch:Soft food – see ‘Eating’ notes

Mid-afternoon:100ml water through my tube

Dinner:Soft food – see ‘Eating’ notes

I manage best if dinner is not too late – I prefer to eat at 5pm or not too long after, as I get really tired at the end of the day.

After dinner, I like to wind down for a short time with a story or music. I will let you know if I have had enough and want to go

to my room and start getting ready for bed.

I start getting ready for bed at around 6pm, sometimes a little earlier.

Before bed:o Run my bath – I like lots of bubbles!o Take off my clothes, splints, pado Check the area of my tummy around

my tube, and clean with a gauze pad if necessary

o Give medicine through my tubeo Let me relax for a few minutes in the

bath – I love the water (at home I use a Bealift to get in and out of the bath – it holds me securely and lets me relax)

o Wash me with showergel – especially the area under my chin and in my neck, where food sometimes goes

o Encourage me to stretch out my arms, hands, fingers in the water and to kick my legs

o You can wash my hair if you think it needs it – I don’t mind having it washed

o Brush my teeth while I’m in the bath (remember to use my unflavoured toothpaste!)

o After my bath, I like to be wrapped up snugly in a towel and dressed quickly before I get cold

o If my bottom or the area round my tummy tube looks a bit red, put on some Sudocrem (my skin is usually in

very good condition and is hardly ever red)

o I wear socks with my pyjamas to stop my feet getting too cold and to prevent pressure on my heels, and if it’s a particularly chilly night, I wear a vest underneath my PJs

o Put my hair out of my face with an elastic band

I go to bed at: 6.30-7pm

I’m usually keen to get settled in bed, and I’m a very good sleeper.

When you settle me into my bed, make sure that:o My legs and feet are positioned in my

sleep support systemo My feeding pump is set o The head of my bed is raised a little

I like to watch CBeebies in bed before I fall asleep. Sometimes I listen to a story CD once CBeebies has finished. Sometimes I just want to go straight to sleep – I will let you know this by moaning and turning my head away.

After I’ve gone to sleep:

Sometimes my bowels move in my sleep – I often need to be changed a few hours after bed-time.

HOW I GET DRESSED


During the day:

I wear a spinal brace under my clothes. The brace is in two pieces, to make it easy to put on.

The first thing to put on is a vest, which goes underneath my brace. I have vests with and without sleeves, depending on the weather and what I am wearing that day. My vests have a hole cut in the middle for my tummy tube. I always wear a special circular pad around my button, to protect my skin.

ADD PHOTOS WHERE THIS HELPS WITH DESCRIPTIONS

The rest of my clothes go over the brace.

I wear AFOs to support my feet and ankles. I wear KNEE SOCKS underneath the AFOs and shoes on top. You will notice that my shoes are much bigger than my feet: this is to make room for the AFOs, not because my mum doesn’t know what size my feet are.

Please make sure that I am wearing a bandana bib over my clothes to keep them

dry, as I dribble a lot. I will need lots of bib-changes through the day.

At night:

I wear ANKLE SOCKS with my pyjamas in bed. This is partly to keep me warm – I have poor circulation, and my feet are often quite chilly – and partly to prevent pressure on my heels from my sleep system.

EATING AND DRINKING


I eat orally during the day, as much as I can, and I get extra calories at night via my tube while I am sleeping.

Eating is hard for me, because I have trouble chewing food and moving it from the front of my mouth to the back.

I am unable to swallow liquids, so water and medicines all go through my tube.

My food has to be very soft – like the texture of creamy mashed potato. I can’t manage mixed textures – everything has to be as smooth as possible, because I’m not very good at chewing and swallowing ‘bits’.

It can take me quite a long time to eat quite a small quantity, because I chew and swallow slowly.

I get tired when I eat. Listening to some of my favourite music helps me keep going!

I sit in my wheelchair for meals. I am pretty messy, so you need to cover me and my chair up before I start eating!

I eat my food from a normal teaspoon. I can’t hold the spoon, so I need someone to help me eat. It takes a while, so you may need to be patient and wait for me to look towards you and open my mouth. Some days I am really enthusiastic about eating, and other days I can’t really be bothered.

When I have had enough, I persistently look away and keep my mouth closed.

I can’t drink from a cup or a straw, so I have water through my tube. It’s best to wait a while after eating before giving me water, so that my tummy doesn’t get too full – when I’m too full, I am likely to vomit.

WHAT I LIKE TO EAT


I eat all kinds of food: as long as it can be whizzed smooth enough in the blender, it is okay.

I like a wide variety of tastes, and I’m not too fussy. I particularly like chocolate!

Some of my favourites are:o Anything cheesyo Fish (especially smoked fish like

smoked haddock)o Meat, potatoes, veg and gravyo Cake and custard (mash the cake well

with a fork into the custard)

Flavours I don’t like:o Anything citrus – I don’t like things that

taste of lemon or orangeo Mint

I don’t get on well with yogurt – it tends to make me sick – but fromage frais, custard and mousses are all fine.

Crisps and biscuits don’t work very well. I can really only manage things that dissolve easily when I bite them, like Quavers or cheesy puffs.

I’m not very good at biting food (which is surprising, as I am good at biting my own hands or other people’s), so I need a bit of time and encouragement to bite into something like a Quaver.

THE TUBE IN MY TUMMY

PERSONALISE AS NEEDED. EXAMPLE DESCRIPTION BELOW.

I had a gastrostomy to insert a feeding tube in [date]. It was changed to a [Mini/Mic-Key] button in [date].

I had the tube put in place because I have trouble drinking more than a few drops of liquid orally, and I wasn’t managing to take all my medicines. I also struggle to eat enough orally to help me grow.

The tube is used now for medicines, water, blended food and night-time tube-feeds to give me extra calories.

Button details:[Type and size of button]

Feed details:[Type of feed][Volume given, at what times, at what rate if via pump]

MY MEDICINES

I take the following medicines each day.

Morning [time]

Name of medicine, what it is given for and when it was first prescribed (eg Sodium valproate, for epilepsy, since Feb 2013)

Dose Method (eg spoon/syringe, dissolved in water, etc)

Lunchtime [time]

Evening [time]

EXAMPLE DESCRIPTION:

All medicines are given through my tummy tube (Mini button). Flush the tube afterwards with 40ml water.

MY DIAGNOSES

I have been diagnosed with the following conditions:


Rett syndrome: Diagnosed in [date of clinical/genetic diagnosis] (mutation: add specific MECP2 mutation if known)

Gastro-oesophageal reflux:Diagnosed when I was [age], treated with [names of medicines]

Scoliosis: Diagnosed when I was [age], progressive right-sided thoracic neuromuscular curve, kept under regular review at [name of hospital]

Epilepsy: Diagnosed when I was [age], symptomatic generalised epilepsy, treated with [name of meds], kept under regular review at [name of hospital]

Dystonia: Diagnosed when I was [age], evolving motor disorder, treated with [name of meds], kept under regular review at [name of hospital]

WHAT IS RETT SYNDROME?

Rett syndrome is a complicated neurological disorder caused by a faulty gene. (The gene is called MECP2.) It is usually caused by a random genetic mutation, not a gene that is carried in families.

The mutated gene has switched off a vital protein in my brain, and interrupted the connections between neurons.

It is as if the connection between my brain and my body has been switched off, so I can’t make my body work the way my brain wants it to.

That’s why I can’t sit, stand, walk, talk or use my hands. [AMEND AS NEEDED]

It affects all kinds of things, including my spine, breathing and digestive system. [AMEND AS NEEDED]

WHAT HAPPENS WHEN I HAVE A SEIZURE

I started having seizures in [date]…

ADD DESCRIPTIONS OF WHAT MY SEIZURES LOOK LIKE, HOW THEY AFFECT ME AND WHAT NEEDS TO BE DONE

ADD DETAILS OF ANY RESCUE MEDS OR EMERGENCY HOSPITAL ADMISSIONS

MY HOSPITAL ADMISSIONS

Date Reason for admission

Details

IMPORTANT CONTACTS

My mum:Name – number

My dad:Name – number

Home:AddressPhone number

My school:Name, Address, Phone number

My GP:Name, Address, Phone number

List of other professionals who are involved in care, with addresses and phone numbersEg community paediatrician, neurologist, cardiologist, gastroenterologist, spinal surgeon, physiotherapist, occupational therapist, speech and language therapist, orthotist, dietitian, community pharmacist, community nursing team, wheelchair service/maintenance, children’s social care team, etc…

· Web view‘Baby’ books, with only a word or two on each page and too many animal noises...

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