Resources for Parents with ME - helping children come to terms with chronic illness

[arewenearlythereyet]

I've recently had to do a few internet searches looking for some helpful information. My son has been having difficulties as he realises that dad is ill and may not get better.

This is quite a normal reaction apparently for a child of his age (9). It is manifesting itself mainly as difficulty sleeping\ general worries etc.

I looked online for a guide or something to help explain things to him, but most of the resources (understandably) are for parents dealing with children that have ME rather than the other way around.

So I thought I would start this thread so we can pop useful articles and resources to help children who have parents with ME.

The first thing I have tried is the following book recommended by the MEA

Amazon product ASIN 1849054525
This is quite good in that it is written by a fellow sufferer and highlights some of the key day to day issues (description of the condition, prognosis, cant play rough and tumble games, cant have friends around to the house as often etc. etc.).

I havent read all of this with him, so don't know if its helping yet, but already this has helped tease out his main fears and worries and get him to ask questions. Best not reading this before bedtime though.

 

[arewenearlythereyet]

"During the course of childhood, most children will experience times when one of their parents is ill. It is not unusual for an adult to have an acute minor illness. Major illnesses or injuries can also occur. And many adults suffer from chronic conditions such as diabetes, asthma, arthritis or heart disease.

For kids, these periods of parental illness or incapacity can be unsettling. Younger children are often confused and frightened when a parent is ill. In their eyes, adults are still all-knowing and all-powerful. Children may express their fear by developing sleeping problems, wetting their bed, regressing to a younger age, or by behaving badly.

Some children, when confronting a chronic, incapacitating adult illness, may become emotionally flat. Their emotions become constricted out of fear and anxiety. Sensing that their parents are unavailable, they may withdraw into themselves and develop their own chronic problems such as bed-wetting or night terrors. Children may also show their anxiety by developing stomachaches or headaches."


Read more at http://www.everettclinic.com/blog/helping-children-cope-when-parent-sick#ioqZqmQzAv8DPKAi.99

 

[chrisb]

I don't think I would read too much about it. I suspect that your judgment is at least as good as that of any author on the subject. You will get through it together.

 

[Invisible Woman]

From my own experience - i would have been about your son's age when one of my parents became very ill with a chronic health condition.

Being open and allowing the child to ask questions, and for them to know it's okay to ask questions, makes a big difference.

As long as he is coming to you and talking to you, you'll work through it.

 

[TiredSam]

I don't think I would read too much about it. I suspect that your judgment is at least as good as that of any author on the subject. You will get through it together.

Sorry but I disagree, if you are worried I would read everything you can about it and then follow your own judgement, including any useful nuggets you might have picked up from your reading and disregarding any nonsense you might have had to wade through. As the father of 3 boys, here's a book I found very useful:

Amazon product ASIN 0008128030
I came down with ME when my boys were 11, 15 and 17. The older two were already out and about with their friends, but the youngest did miss out on doing physical stuff with me like cycling, which I did a lot of with the older two at his age. As far as "rough and tumble" is concerned, ME came along at just the right time for me, ie just as my boys were getting bigger and stronger than me, so I could say "leave me alone, I'm ill!" and they never did get to pay me back for all the throwing them around I did when they were smaller.

 

[Binkie4]

I have just bought this for my daughter and grandchildren. We don't see them a lot because they live 100 miles from us. Since I deteriorated at the end of 2016, we have been unable to visit them. It's a nightmare journey around the M25, 26 and 20, and having to sit up combined with the adrenaline rushes of mad drivers, it just hasn't been possible so they come to us.
They usually come for a day but occasionally staying overnight. Last Easter we rented a house in the New Forest for us all plus our son. I was in bed the whole 3 days, not even up in the evening. It was my 70th birthday and I couldn't respond to the cards, home made gifts etc. Awful. They looked confused.

And I don't know what they make of it. I am not well enough to talk to them as I wish and my daughter doesn't handle illness very well. I have bought her " Unrest" but the last I heard, she hadn't watched it. She is busy with a full time job but there are evenings. My husband is great at keeping the practical side going, meals and drinks but they would like me to play with them ( now 10 and 6). I try sometimes, solitaire taking turns, knitting but it always provokes pem.

It's been like this throughout their childhood. I feel so sad they will never know me. I look forward to reading this book.

 

[Hutan]

I haven't read this, but it might be interesting for parents with ME/CFS. And possibly good to give to the people supporting parents with ME/CFS.

We've got this: stories by disabled parents.
'In this landmark anthology, twenty-five parents who identify as deaf, disabled or chronically ill discuss the highs and lows of their parenting journeys'.
Edited by Eliza Hull

The first major anthology by parents with disabilities

How do two parents who are blind take their children to the park? How is a mother with dwarfism treated when she walks her child down the street? How do Deaf parents know when their baby cries in the night?

When writer and musician Eliza Hull was pregnant with her first child, like most parents-to-be she was a mix of excited and nervous. But as a person with a physical disability, there were added complexities. She wondered- Will the pregnancy be too hard? Will people judge me? Will I cope with the demands of parenting? More than 15 per cent of Australian households have a parent with a disability, yet their stories are rarely shared, their experiences almost never reflected in parenting literature.

In We've Got This, twenty-five parents who identify as Deaf, disabled or chronically ill discuss the highs and lows of their parenting journeys and reveal that the greatest obstacles lie in other people's attitudes. The result is a moving, revelatory and empowering anthology. As Rebekah Taussig writes, 'Parenthood can tangle with grief and loss. Disability can include joy and abundance. And goddammit - disabled parents exist.'
Contributors include Jacinta Parsons, Kristy Forbes, Graeme Innes, Jessica Smith, Jax Jacki Brown, Nicole Lee, Elly May Barnes, Neangok Chair, Renay Barker-Mulholland, Micheline Lee and Shakira Hussein.

We've Got This will appeal to readers of Growing Up Disabled in Australia and other titles in the Growing Up series.

About the Author

Eliza Hull is a musical artist, writer, journalist and disability advocate - and a contributor to Growing Up Disabled in Australia. Her podcast series on parenting with a disability, We've Got This, was one of Radio National's and ABC Life's most successful series of all time.