You have patchy information given by a young person who is sometimes depressed or suffering major fatigue.

Teenagers especially can get angry and moody and reluctant to answer specific questions.

Maybe they think they won’t be believed. Maybe that just don’t want to think about their pain.

It is really difficult to accurately work out what treatments are really helping and remember them next time you hit a flare up.

Memory is also another issue – both the stressed child and the stressed parent may not be able to recall accurate facts about treatments and timeframes.

This means that time with medical specialists is not as valuable as it could be mainly because the information we give is just not accurate enough.

Gianna Gribch has developed a mobile phone application called Chronica to help people with chronic pain accurately record information about their pain and their treatments.

My teenager daughter has asked me to send her a link. I can tell this has sparked some real interest.

If you are interested – here is where you can find out more about Chronica.

This is a wonderful resource for parents helping their children manage chronic pain.

You can find the latest research, contact information for multidisciplinary pain clinics and a forum.

I am really excited to see such a positive and useful initiative and I congratulate everyone involved.

There are some very useful techniques that your teenager can learn in order to manage their emotions and their challenges.

An experienced psychologist can sometimes help your teenager develop these skills. That is how we came to find Elizabeth Forrester.

She is a Fremantle based psychologist who has a special interest in working with young people who suffer chronic pain.

We first met Elizabeth when she was working with the specialist pain management unit at Fremantle hospital.

She is now in private practice and I think she makes a great addition to our Helpful People list.

My daughter relates well to her because she is young and almost fits a big sister role as well.

If you have a teenager who is battling chronic pain and all the emotional issues that can accompany that, you might find Elizabeth a helpful addition to your network.

You will find her contact details on our Helpful People page.

Do you know of a resource that other parents might find useful – please get in touch we’d love to hear from you.

To a lot of people it would seem incredible that a child in chronic pain would have to wait that long.  There are resources out there but it can take a huge effort if you don’t have the right words on the right bit of paper for the right person.

In this case the process for change followed these steps;

• The child had an assessment by her specialist.
• He wrote a letter to the school outlining the child’s condition and the effect this condition would have on her.
• The specialist wrote a referral for a private occupational therapist to visit the school and make an assessment of the school environment.
• The occupational therapist then produced a report for the school on the changes that needed to be made for the student to fully participate.

The school explained to the family that once the school has the report it must act on it immediately. Apparently there is considerable accountability to Disability Services once such a document is tabled.

In this case all the efforts to lobby the school for extra support had not been effective.  It was not until the family asked the specialist to assist that action was finally taken.

The assistance children can access depends on many factors-

• The time and energy parents have to knock on doors and ask for questions. (Are both parents working full time?)
• Access to a specialist with a willingness to assist. (Do families understand that their specialist can help?  Is that person approachable and helpful on this practical level.)
• The attitude and internal resources of the school. (Some schools have experienced caring staff who will help.)
• Resources within disability services in that particular area.

If your child needs extra resources at school you might try the process described above.

My husband also recommends writing a letter to the school Principal describing your child’s needs and asking what you need to do to access the available resources – from the school and any related government agencies.

I’d be interested to hear how you have tackled it and what your experience has been.

PS. We had a lap top provided for our daughter by the Centre for Inclusive Schooling. We found these people difficult to deal with.  Once it was too difficult for my daughter to attend school we transferred to School of Distance Education.  Our daughter continued her education from home. The Centre for Inclusive Schooling then asked for the laptop back.  Apparently she could only have a lap top if she went to a day school. Good one guys!

The Child Health Library at Princess Margaret Hospital has recently added ”Helping children with complex needs bounce back” by Kim Aumann and Angie Hart to our collection.  This book provides information on the latest ideas on helping children to build resilience.  It also offers ideas and activities for parents and health workers who want to help a child improve their resilience.

I notice a review for the book on the Jessica Kingsley Publishers website suggests that this is a really practical resource for families that are feeling the pressure.  Here is part of what one reviewer had to say,

‘….We know that families value high quality emotional and practical support, but often lack the right advice that enables them to achieve ‘ordinary’ lives. The past decade has seen growing interest in the concept of developing resilience in both children and parents. This book offers a “magic box” of ideas, and a menu of coping strategies for families and those who support them. The emphasis is on practical steps forward, positive and achievable outcomes, with the end result of families feeling confident and competent in helping their own child to make progress.’
- Dr Philippa Russell, Chair of Standing Commission on Carers

If you happen to borrow this book, I’d be very pleased to hear your thoughts.  Also thanks to Jane for letting us know about this new parent resource.