Being mum and my son’s care package manager: A delicate juggling act

Elijah and Kaddy

June 2017 saw Elijah spend another stint in Bristol Children’s Hospital. This time, he had three consecutive episodes of unconsciousness during the morning of Saturday 3rd June.  After the third episode, I called 111 and we were quickly taken to hospital by ambulance. For the previous three weeks, Elijah had… Continue reading

What are you staring at?

“It’s rude to stare.” I bet most children hear this at some point in their early years because, in most cultures, staring is seen as rude. To be on the receiving end can make you feel uncomfortable and exposed, so good manners dictate that we keep our glances short. Why… Continue reading

View the Apert webinar discussion on grief, loss & depression

This is the second of the webinar series held in partnership with RareConnect. This webinar looks at coping with grief, depression and anxiety - the last taboo.

The death of a child is just about the worst thing that can happen to a parent. When the child has lost their battle with a disability and you have been involved in 24/7 in their care before that, how do other people relate to you over the loss? Have you felt like you've been expected to have a time-limit on your grief? How do you carry on?

Our speakers, Tania Weissberg, Jeannie Ewing and Beth Coleman explore these issues in a frank and moving discussion. If you'd like to join RareConnect, click here for more information

People with complex needs don’t feel pain?

postural care

“People with complex needs don’t feel pain?” A guest blog from former physiotherapist, Liz Goldsmith, of Postural Care Skills  on why gentle postural care should take into account pain prevention for every patient, whatever their disability. NICE Guideline on spasticity: evidence update 70 endorses the deliberate infliction of pain on… Continue reading

Second Apert Webinar on RareConnect

Our online Apert community at RareConnect is hosting another Apert-focused webinar this weekend. It’s looking specifically at the issues of Grief Vs Depression and the perceived taboos and forbidden feelings felt in these situations. For all details of how to access, visit our RareConnect Apert Community Continue reading

Leadership in postural care

The Postural Care site has interesting posts and perspectives on the subject of postural care. Here is a recent example: Thoughts on Postural Care Leadership by Ross Golightly BCU student nurse In tweeting with Sarah Clayton from Postural Care after this year’s positive choices conference I was delighted to get the… Continue reading

What every parent should know when giving birth to a child with Apert Syndrome

Here are a few tips that may help when your have a child with Apert from Tania Weissman. Make sure your child has been properly diagnosed, not only with Apert Syndrome but also with the variety of congenital malformations that can occur during gestation. Your baby will require follow up… Continue reading