Living with Alstrom Syndrome

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Living with Alstrom Syndrome

• Presentation
• By
• Dr Mary Glover

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Living with Alstrom Syndrome
Life is a bit like a journey We can plan for
some of it but we often meet the unexpected
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Living with Alstrom Syndrome

• Life stories are
• important

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Dreams are important
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Making plans is important
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But sometimes . things dont work out ..
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Living with Alstrom Syndrome

• Complexity
• Living with uncertainty

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help I'm a parent

• Having a routine
• Means putting in a few fixed points
• Deciding what boundaries you want to hold
• Deciding what can be flexible

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help I'm a parent

• Making decisions
• Decide what you want to control
• Decide what your child can control
• Decide what you want to negotiate

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help I'm a parent

• What works for you?
• - Is it easier to manage what the kids eat when
  you do the shopping?

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help I'm a parent

• What works for you?
• What activities do you enjoy can you
• weave an exercise programme into that?

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help I'm a parent

• Be kind to yourself
• Its not selfish to spend some of the family
• money on you.
• Letting the kids watch a DVD is not a cop
• out.

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help I'm a parent

• Its not a sign of weakness to seek help
• Counsellors are companions on a journey,
• they are there to listen - not tell you what to
• do.
• Counselling means having support and a
• place for you

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Living with uncertainty

• Uncertainty is stressful, dealing with what is
  known is always easier than dealing with what is
  unknown.

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Managing Stress

• Identify your own worrying thoughts
• Decide who to share them with

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Managing Stress

• Challenge your own thoughts
• Are there a more helpful thought to go alongside
  them?

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Challenging thoughts

• First Thoughts
• I am worried I wont get
• everything done

• Helpful Thought
• Ill do the first thing on
• my list then decide
• what to do next

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Challenging thoughts

• First Thoughts
• I am worried that I wont
• get everything done

• Check it out
• What does this thought
• make me believe?
• e.g. Everyone will think
• Im not a good parent

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Challenging beliefs

• Beliefs
• Everyone will think
• Im not a good parent

• What is the alternative
• I am a good parent
• even if I dont get
• everything done

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Living with Alstrom Syndrome

• Believe you are a good parent
• Allow yourself to make mistakes
• Be as kind to yourself as you are towards others
• Sometimes your needs come first and its good
  for kids to know that