Children and Chronic Fatigue Syndrome – The Dance Between Relationship & Creativity

Monkey on the stairs

As you will know if you are following my blog I am speaking about my journey to help my 7 year old son with his recovery from Chronic Fatigue. Seeing his energy and how the patterns in his body shift and change gives me big clues as to how to help him.

When he was first unwell Luca appeared to me to be drained of energy – like a shadow of himself really. To ask him to be in situations that demanded much of him like school seemed ridiculous. I would see the little bit of energy he had just drain away from him. I was the only person to see this. To other people he seemed to appear normal only I was puzzled as to why they couldn’t see the more obvious signs like his pale pallor and red rings under his eyes and why they couldn’t hear how small his voice had become and see how his whole body seemed to droop. Maybe these things could only be picked up through a mother’s intuition. and/or a healer. Being both made this easy for me.

When Luca progressed from here I saw his energy as having a bit more ‘zing’. He was less ‘droopy’ and had a bit more bounce in  the way he moved. His eyes became brighter, his face more animated and his voice bigger. He didn’t need so much rest.. However he did need a lot of interaction. We spent a lot of time playing some of his board games that he had kept since he first had them when he was three. We coloured with colouring pens and that is about all we did.  When Luca rested he watched programmes on television that I discerned as being fairly relaxing and not over-stimulating. We continued like this for a couple of months.

Then I noticed Luca getting more fed up than he been with watching television and bored with playing the simple games. I thought he needed more stimulation so we worked out a sort of timetable and planned to do some more cognitive learning things. However as soon as I started to do things that demanded Luca listen more to me he seemed very uncomfortable and would ask me to stop talking. I gave him some self discovery and little writing tasks to do but he quickly became distressed trying to do these. So instead we made up stories using toys and castles and train-sets and anything we could find. Luca said he liked my ‘story’ voice and would ask me to use it for simple instructions too. He liked its softness. It felt better for his ears. We also painted sometimes but Luca found this tiring.

Finally when we both felt a bit ‘storied out’ I noticed that Luca was becoming a bit restless again. What had been keeping his energy up was now not seeming to work so well.  I felt he needed something a bit more involved so i scoured the internet for some interesting construction toys. I found something he loved called Jawbones and for the bath I found Squigz, He sat for hours making things with these – mostly what he called mobiles which were vehicles for his soft toy collection including his favourite – Hatty the Rat!. He also started making lots of junk models out of cardboard boxes and tape – something I had done with him since he was about 3. We have what we call cardboard city in our house. Their next home is the recycling!  Following his creativity like this I noticed that Luca’s energy really began to ‘zing’ and he seemed very happy. I noticed one thing though – that Luca was drawing into his own world – and concerned about this I made the decision to keep playing with him and also to find him more social interaction.

Luca and I decided to try Beavers (Scouts for younger children). Here he would meet some of his friends from school but not have any of the pressures of school. As soon as we arrived in the car Luca’s friends were spotting him and calling his name. They were clearly really excited to see him and one of them very accurately and caringly said “Luca, we haven’t seen you for 6 moths. Where have you been?”  Luca didn’t have much energy to answer and was clearly a bit over-whelmed. He was just trying to cope with the cold and the buzz of lots of excited Beavers whirring around!  But I knew he was happy to be there. One of his friends took his hand and helped him through a sort of treasure hunt activity in the woods. Afterwards he was worn out and didn’t feel very well for a good couple of days. He spoke abut the challenges he had faced that night like the cold barn but he said he wanted to go back the next week. The following week was colder and it took him even longer to recover but it didn’t deter him. The following week after that it was bank holiday and Luca was clearly disappointed at not  be seeing his friends that week.

Luca has a friend coming to play on Saturday and I am arranging a drum teacher for him.  He has a pen pal in Africa and we are going to join the RSPB so he might find some other little naturalists to mix with. .But I’m not sure this is going to be enough. Somehow there is a leak in his energy tank.. Being highly creative does’t seem enough. Luca has always been a people person. His friends have always been everything to him. And if he meets you he probably won’t forget you and will likely talk about you for days!  Creativity isn’t going to be enough. Luca needs more relationship.

In a previous blog I raised the question of whether the school curriculum is creative enough for children’s well-being these days. I think probably not but I don’t think home schooling is the answer for some children either. Perhaps it is up to us as parents to fill the gap – to closely monitor the amount of time our children spend in virtual entertainment and screen time – and to make sure they don’t forget to make stuff, paint, make up songs and plays and dance to the beat!








About jenniewilliamsonline

Hi. Welcome to my blog. I am a visionary and my vision is to see more people healthy, happy and fulfilled. My Insights: Relationship is bigger than the interaction. Creativity is bigger than the project. Journey is bigger than the plans of the day. Vulnerability is the new self-sufficiency. Feeling good enough is the new enlightenment. Attachment is the new detachment. Sensitivity is being alive - Soulfulness is our deep heart-felt response to being alive. Separation is the biggest cause of dis-ease. Healing is transformation. The Christian message is an invitation to a warm embrace with God.
This entry was posted in 6 CHRONIC FATIGUE SYNDROME and tagged , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s