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
“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
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?
“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
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
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
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
Tania Weissman writes about the use of orthotics with a child who has Apert syndrome. Children who have Apert Syndrome experience a variety of boney idiosyncrasies and their feet are a perfect example of that. In some children, the big toe may or may not be fused to the rest… Continue reading
Since surgery is the only option to address the fusions caused by the mutation and that my son was severely affected by the syndrome, I always followed the Doctor’s recommendations. 18 plus surgeries later, I don’t regret having used the best of what modern medicine had to offer. However, there… Continue reading