Susie Mallett

Parent blog

Wednesday 20 February 2013

How high are the expectations?

Chewing reflex

I have been thinking a lot about the chewing, and naturally also the salivating that takes place with some of my clients, before the food actually gets to the mouth, the action of starting to chew at the very thought, or at the sight of, food.

Does anyone have anything to share about this? How it is overcome?

My client and I have always worked hard on this. We are overcoming it but it is a long road as he says.

My client is a young adult who eats in a café or restaurant now and again, who eats his midday meal with a group of colleagues at work and who eats other meals at home with five or six family members.

When he was younger we would practise at some meal times with a mirror in front of him, and then sometimes without it, to see how he managed at other times. We often reintroduce this method as it always brings positive results.

Mirror, mirror on the table

The mirror helps him to concentrate his thoughts on himself and not to be distracted by the chatter of his three siblings’, or the discussions of his parents. It also encourages him to control the movement of his mouth, his jaw and lips, to keep his lips closed while chewing and his mouth shut when collecting more food with his fingers or on a fork or spoon. He also uses the mirror also to check the position of his head and the movement of his hand, fork or spoon to his mouth. 

He has learnt over the years to open his mouth only to put the food in it and to chew with his lips closed. He can prevent the reflexive chewing that still starts as soon as he thinks about eating something. This produces too much saliva that pours out of his open mouth when he looks at his plate, if he allows it too. It is a great achievement for him to have achieved all of this considering the severity of his athetoid movements, but it is incredibly hard work for him to do it always.

Coughing, spluttering and hiccupping

This client has also learnt that the sudden, reflex coughing fits that occur after eating are controllable by closing his mouth and breathing deeply, much in the same way as we can all control coughing when we sit in a full lecture hall or a classical concert and feel the need to cough, by swallowing, stretching our bodies and breathing consciously and deeply.

With learning to control hand movements to stop jerks, and shakes, he can also control the amount of liquid that he drinks, control the size of the gulps and therefore the amount of air that he takes in. A recent realisation that he in fact tries to suck the liquid into his mouth rather than sipping it has resulted in reduced air intake, less spluttering and fewer instances of the hiccups.

Peaceful meals

We are all, family, colleagues and conductors, extremely pleased with this young man’s progress and hope for many quiet and peaceful mealtimes in the family and elsewhere, when conversation flows without explosive interruptions from my client and without someone having to constantly speak to him with reminders of how to do things.

It is great when this is how it is and in a restaurant my client usually does extremely well to concentrate to get it right. This is especially impressive to see in a new and strange environment that could be off-putting, but instead the presence of strangers is a great influence and motivation for him. My client stops producing excess saliva because he stops unnecessary chewing motions, he prevents the spluttering coughs that spray the table with saliva by practising his learnt breathing technique.  He prevents dribbling by lifting his head often not producing saliva in excess by chewing with an empty mouth. He prevents unpleasant sucking noises produced from his mouth by pressing his lips together and opening them to take in food at the very last minute.

Blending into the background

My client is a bit of a performer, someone who likes to be the centre of attention. This often has a negative influence on his behaviour and has often been the reason why in the past he has been noisy and messy at the table, thus receiving negative attention.

Something that is very important to his siblings, and of course his parents and any friends present, is that as my client learns new skills at the table and learns how to move carefully and quietly in strange places, so that they no longer feel that their table in a restaurant is the centre of attention, with gazes averted from, or attracted towards, them and their brother.

Such festive occasions can now pass harmoniously, fun can be had by all and everyone can return home relaxed.

Preventing a commotion
Practising being the quietest, least noticeable person in the room

Things do not always work out like my client would like them to. When at work or around the kitchen table at home concentration lapses can mean a big mess and lots of commotion, and lots of eyes on him!

At work the group leader has organised a rotation of supervision so there is always someone there to remind my client, and any others who need help, to check their manners and eating habits, and to encourage acceptable social behaviour. My client learns the importance of helping to produce a positive working environment.

When I am working with my client in his home we all insist on the same level of cleanliness and behaviour that we see is possible in other situations. We work hard on keeping his concentration on his own personal space and actions when he is eating and he knows that if he wants to listen to or participate in the discussion around the table then he has to stop eating that is until he has learnt to do both at once!

It takes an awful lot of effort and concentration to stop that chewing reflex that produces so much unwanted saliva. It takes an awful lot of concentration to keep his head lifted so that the saliva drains away down his throat and not out of his mouth. It takes a lot of concentration to remember to swallow and breathe instead of coughing, and it takes a lot of control of movement to be quiet and help build a pleasant, relaxed atmosphere for all.

Setting expectations

But my client knows that if he wants to lead an active life, if he wants to socialise with people outside his close family unit, and even strangers, he needs to be able to behave in a way that is acceptable in this day and age. He realises that some sudden movements produce anxiety in strangers, and they move away from him. He knows that sudden turns in the street, stepping backwards to regain his balance can cause danger to himself or harm others, especially vulnerable older people or children. He does his best to control his movements, and also his grimaces, as he wishes for an active life in the outside world.

We often talk about how acceptable social behaviour changes from generation to generation. We have thought that it is perhaps in a way unfortunate that he is not living in the age when people ate their meat from the bone, wiped their hands on their sleeves and threw the rest under the table for the dogs.

On the other hand, he is not living in the age of white table clothes and napkins, and elbows glued to the sides, that I grew up in! And he has learnt many new skills because of the restriction that society place on all of us.

My client is doing well and, considering that he was a late starter in independent social life, first going out independently when he was eighteen, he is learning as fast as children who start going to school alone when they are six or seven years old.

I suspect that many people’s  expectations for those like my client, who have athetoid cerebral palsy, would not have been set so high as his have been. As one of four children the expectations for him have always been set high, both those expectations that he sets for himself and those set for him by his family, especially those set by his siblings.

As a conductor I put some order into these expectations. I set them into our programmes so my client can achieve them all at some stage in his life, one or two steps at a time.