Some Enabling Support Strategies: A Resource for Personal Assistants

Tom is now 19 and has, over the past month or so, suddenly realised a sense of his power as an adult.  A result of this is that he is thinking about and renegotiating his relationship with his PAs.  Tom is significantly affected by DMD-associated information-processing impairment and benefits from support in developing his independence skills.  The following is a resource, produced collaboratively by myself,  Tom, and his PAs, outlining strategies that PAs can use, which may be both supportive and enabling for young adults like Tom.  

Enabling Support Strategies: 

As a young adult, Tom is in control and taking the lead in his life.   At the same time, DMD, in Tom's case, can cause challenges such as:

•  Anxieties, worries, and difficulty managing uncertainty;
•  Difficulties with thinking about two or more things at once, such as getting together things to take when going out, planning a project, or considering actions and consequences in a busy situation;
• Difficulties switching from one’s own train of thought to the task in hand and transferring from one activity to another;
•  Needing longer to take in information, and difficulties with short-term memory recall;
•  Hypersensitivity to loud or sudden noise or strong smells.

 As Tom’s PA, you can support Tom by

•  Overseeing the big picture, especially in terms of planning, timekeeping, and safety.
•   Deferring to his preferences, unless there is a safety or time pressure reason not to.

Here are some key techniques for doing this:

Use a Client-Centred Approach

• When proposing, discussing, or considering a course of action, ask Tom’s opinion 
•       'Is it okay if we finish in around 5 minutes...?'
•       'I was wondering if...  What do you think?'
•       'What do you think of this idea?'
•       'There is something I wanted to run past you...'             

•  If you propose an idea, always offer a choice – but make it a closed choice between two options (see the section on supporting Tom to take in and recall information).

• Ask Tom how he likes things done and go with his preferences, unless there is a safety reason not to.  Don’t be defensive.
•       'Am I doing this the right way?'
•       'I'm sorry.  Tell me more about how you'd like this done.'           

• Be alongside him in his feelings.  Don't try to solve the problem or say it's all okay.
• Acknowledge - ‘I’m imagining that that’s a difficult feeling to be dealing with.’  
• Mirror - ‘I think I’m hearing that you feel like…  Would that be an accurate description?

  

Use Collaborative Problem Solving for Practical and Safety Issues

Discuss the problem/decision which needs sorting.  Invite Tom to think along with you, and together come up with possible solutions.  Do this ahead of time, in a quiet space.

• 'I'm thinking about safety when I'm driving.  I'd like to discuss some thoughts with you.'
• I'm thinking this might be a solution...  What do you think?'  

When deciding if an action is okay / not okay, Tom is used to thinking in terms of:

•  Does this action hurt me, or other people, or planet Earth?  If the answer is yes to any of these questions, don't do it.  If the answer is no to all of these questions, it's okay to do it.

This can be a helpful starting point for the collaborative problem-solving process. 

(The ‘you’re allowed / you’re not allowed’ or ‘your mum wants you to…’  ways of thinking aren’t applicable to adults and aren’t part of the collaborative problem solving approach.)

 

Empower Effective Self-Organisation

• Have checklists and support Tom to consult them before he goes out or embarks on a task.

• Have routines and always follow the same routines where possible

• Plan ahead - sudden setbacks can be very challenging for Tom.  Always check opening times / access etc before you set out.  Also anticipate possible setbacks and check out a potential Plan B with Tom.  Discuss this with Tom ahead of time, in a quiet place, and recall it with him just before you go out.  
• 'If the market doesn't have what you want, how about we go to Ozmens on the way back?'
• Allow time to transition to another activity.  Give Tom extra time to switch from one activity to another.  Additionally, sometimes people with DMD say no to an activity, not because they don't want to do it but because they are over-focussed on what they are doing now.  Give Tom time and phrase it as a question.
• How about you watch to the end of this episode of Buffy, and then we'll go out with Elsie?'

                

Support Tom to take in and recall information

• Get Tom's attention before you speak to him.  Mute any background noise.  Give information in short chunks.  Expect a 5-10 second delay before he responds to you.  If necessary, repeat the question / information in the same words.
• If you propose an idea, always offer a closed choice between two options (unless another option is clear, such as a choice of shirts that Tom can see).  Two closed choices gives Tom a manageable amount of information to take in and consider.  He still has the freedom to come up with his own alternative options.
• 'Are you thinking sandals or boots today?'
• Looking at the tea situation, there's a choice of the curry, or an omelette.  Any preferences?'
• If you and Tom discussed a plan yesterday / in the past, don’t assume that he will remember it.  Ahead of any situation where you need to put the plan into action, in a quiet space recall the plan / check that Tom recalls it.  Use roughly the same words that you used in the original discussion.

 

Minimise Sensory Issues

Be low-key, keep sensory things low-key.  Avoid loud or sudden noise or strong smells.