Elizabeth’s Social Activity by Jane Townsend

My daughter, Elizabeth, is almost 35 years old. She has many of the Phelan-McDermid Syndrome (PMS) features, she is non-verbal and has a limited range of movements. She can walk only (no other vertical movements such as running climbing etc.) and she can stand up from a seated position.

She is the youngest of 3, and lives at home with us (her siblings have left home). We live in a village, in a rural community. During the week she attends a Community Day Centre in a nearby town.

I am using the phrase “social activities” in its broadest sense, as Elizabeth’s social life depends on adult support. In fact, any activity which means being with a group of people is classed as social for her. She finds it hard to interact because of being non- verbal. Also, most of her planned activities classed as “social” are daytime based. They are based from home, or her weekday Community Centre.

If left without frequent adult attention, Elizabeth will stand back and just people watch. This is okay for short periods of time, but she needs the stimulation of mixing and interacting with her peers. The staff at her centre sometimes find it easier to let her just sit and watch, as she is happy and not causing a fuss. Unfortunately, she is in a high need group where some demand a lot more time from the carers than Elizabeth does. Also, she does not get the stimulation and role modelling from these other service users as many of them are also non-verbal and in some cases have aggressive behaviour.

Homebased social activities are mainly planned for the weekends, as she is usually tired after a day at the Community centre. Elizabeth is also, through her own choice, embedded in a routine which is familiar and secure to her after her day at Community centre.

Our weekends are planned around keeping Elizabeth occupied. She gets bored very easily at home and prefers to be taken out where there are people to watch or interact with. We are fortunate that her older siblings live close by, and our close friends are happy to get involved as well.

Shopping is her number one favourite weekend activity, so we now class it as a social event. Supermarkets are high on the list, as over the years staff have got to recognise her. If she is lucky, we often bump into someone she knows. I have learnt over the years that it is easier to do a weekly shop at weekends even though shops are quieter on weekdays. I even split the shop between different supermarkets!

Often, one or other of her siblings comes to the house with their children at the weekends. Elizabeth loves to watch the children play and will occasionally try to join in. Therefore, family gatherings and parties are high on our list of events. Even then, Elizabeth’s attention span is short, and she soon loses interest.

Quite often we, as parents, need to see our own friends and arrange to go out, Elizabeth included, for a drink or a meal. This is not ideal as, after the initial excitement of seeing familiar faces, Elizabeth quickly gets bored because she can’t follow conversations. Therefore, most of our social life takes place when we have respite care.

Weekday activities are based at the day care centre. There are several groups based on individual needs. Elizabeth is in a high need group as she needs personal care and one to one attention in some situations.

Social activities are planned by the staff and to some extent are dependent on weather or staffing as, when possible, they like to go out into the local community. Activities range from walks into town for supermarket shopping, visiting a morning coffee group at a local church, annual theatre trips, visits to other centres, walks in parks etc. The indoor social activities at her Centre, other than art, cooking etc, are seasonal discos, BOKWA classes, and sometimes visiting musical or theatre groups come to the Centre. The staff include the service users when preparing for events which usually involves food preparation and the making of decorations.

In the past we have had a lot of issues regarding lack of social- type activities at her Centre. The staff didn’t seem to realise that keeping their service users actively busy was necessary, viable or manageable. Recently there have been changes with the staffing structure and some improvement to the social timetable.

Feedback from staff informs me that Elizabeth enjoys preparing for the activities but then prefers to sit on the side lines and watch the event.

In summary, Elizabeth needs plenty of varied and stimulating activities planned, for her to be actively engaged and not bored. We must ensure that she has adult support, is amongst familiar people, and the activity is suitable for her both mentally and physically.