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you to the beginning of the module.
Think about the effect the birth of a child with SLD/PMLD/CLDD has on the family as they grow
older. What difficulties might the family
encounter?
Compare your answer with this list.
Click to reveal
text
Challenges
in family life
1. Financial hardship.
2. Strained emotional relationships.
3. Restricted social life.
4. Higher stress levels.
5. Modifications to family activities and goals.
6. Time restrictions caused by care demands.
7. Sleep deprivation.
8. Performing unpleasant procedures.
9. Lack of babysitters.
10. Challenges in day-to-day life.
This list is drawn from Olssen and Hwang (2003) and Runciman and McIntosh (2003)
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Harvey
Listen to Harvey's dad talk about how Harvey's disabilities
affect their leisure times as a family.
The poverty trap
Read this short account of how the birth of a much loved son affected one family.
Click to
reveal text
The
poverty trap
John and Carrie worked hard to buy their first home. They were overjoyed
at Carrie's much longed for pregnancy, but Joshua was born 15 weeks premature,
weighing only 900g. To his anxious parents, looking into his incubator,
there seemed to be more tubes than baby.
Joshua was a fighter. After five
months and three operations, he left hospital with oxygen to aid his breathing,
and special food for his nasogastric tube. He thrived at home, although
his developmental delay became quickly apparent, and every milestone was
hard won.
By 18 months, his profound physical disability meant he needed
a side lying board to aid positioning and postural drainage. Where, in the
modern semi, do you store oxygen cylinders, cases of special food and side
lying boards? John and Carrie's mortgage for their home was based on two
salaries, but Joshua's care needs and frequent epilepsy meant Carrie could
not return to work. Mortgage repayments became a nightmare.
After five years
of struggling, John and Carrie lost their home when it was repossessed.
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Changing
your routine
Write down everything you might do on a busy Saturday.
How might you have to change your activities to take account of a child
with SLD/PMLD/CLDD?
Think about how the following might impact on your plans:
Time
Transport
Accessibility
Medication
Your other children
Care needs
Your and the child's physical strength/stamina/tolerance
Expenses
Stressful
challenges
Researchers for the Foundation for People with Learning Disabilities' 'First
Impressions' project (2005) interviewed 22 parents of disabled children
and asked them to describe the challenges which faced them in negotiating
day-to-day life.
They found that:
Finding a suitable parking space and an appropriate shopping trolley,
using public transport and sourcing a strong enough buggy when the child
outgrows their pushchair, all create stress. Public transport is particularly
inaccessible for disabled children and adults. (p.12).
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