Ways to help children

Talk to your children in a straightforward way, giving honest information in simple language. Encourage your children to talk and express their feelings, and be honest about your own. Listen to your children; it is important for them to be able to talk about their thoughts and feelings without being dismissed

Try to welcome their questions.

 

Some questions may be painfully direct, but if the child has asked, it’s because they want to know the answer. Repeated questions need patient listening and repeated answers (which should remain consistent). Children may ask the same question repeatedly to several adults to check out a puzzling or distressing situation.

It is alright to say “I don’t know” if that is true.

Some advice

Useful links

 

For advocacy

For adults and young people

For parent support

Helpline

 

Our helpline is open 9-5pm

Monday-Friday:

0345 389 9901

Out of hours support line open

5pm-10pm Monday-Friday and weekends: 07712 653 258 or

Dealing with anger

Support our cause

#wearitblue

Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do

Be patient with children when they are angry. It is normal to be angry, and acknowledging the child’s feelings rather than telling them ‘not to be angry’ is best.

Routines

Maintain usual routines as much as possible: bedtimes, storytimes, playtimes, walks and meals. If you cannot manage this at first, enlist a relative or other loved and trusted adult to keep the children’s routine as consistent as possible.

Key carers

Talk to their playgroup/nursery leader or school teacher and explain what has happened. Discuss with them how they will handle the news, and support your child(ren) in the school or nursery.

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

Sign up for our monthly newsletter below

MPS Society

MPS House, Repton Place

White Lion Road, Amersham

Buckinghamshire, HP7 9LP

  • Twitter - White Circle
  • Facebook - White Circle

Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882.

Images and stories may not be reproduced without express written permission. 

© 2019 Society for Mucopolysaccharide Diseases