My ds (4) has M.E. type illness...grateful for any advice re schooling.

[rabbitrabbit]

Hi everyone, I would be grateful for any advice from people currently homeschooling.

My 4yr old is not able to attend school due to illness and, as he would be expected to start Yr1 this coming Sept, I need to gather all the necessary information on homeschooling him.
I'd be very grateful if you could post any useful links or info for me.
I am lucky to have a wonderful head mistress at the primary ds is registered with, hopefully that will continue as his schooling will be driven by his health (he has never made it to reception, though in all honesty I an not overly concerned at this as I feel he is too young to start school anyway).
He may join school at a later date but we of course cannot know now whether that will happen.

Thanks in advance.

[Julienoshoes]

Have a look at the main home education websites;

Education Otherwise
and
Home Education UK
Both of these pages will tell you what you need to know to start with and both have links to internet support lists and to local group contacts.

HE-Special-UK Resources and information for families with children who have special educational needs.

Muddle Puddleis a webpage especially for HE families with children under 8 years old. Home also to the Early Years support list.

There are different ways of home educating -read this articlecomparing ?formal? and ?informal? home education styles

[dippydeedoo]

rabbit rabbit my son whose 12 also has had similar symptoms for 5 years .....do u wanna email me?

[rabbitrabbit]

Hi dippydeedoo, I would love to. I have to sign off for tonight but will be back on tomorrow if you're about.

Julienoshoes-thanks for the great links, I will go through them all tomorrow.

x

[dippydeedoo]

rabbit rabbit ....my email is [email protected]

[rabbitrabbit]

Thanks dippy, I'll be in touch soon x

[Playingthewaitinggame]

Hi Rabbit, know nothing about Home Ed but I have lived with ME in various stages for the past 10 years, so if you wanted to talk about that side of it I can always try and help. First struck at 15 and was out of school for all of year 11 (can't really count that as home ed as I was too ill to really do any studying although must have managed a bit as I did pass 3 GCSS's). Just goes to show how little you can actually do at home (compared to school) and still succeed (got an A*, A and a B).

[rabbitrabbit]

Hi Playingthewaitinggame, thanks for your reply. We have just been referred to the Frimley Children's Centre which has a specialist ME unit so I'm hopeful that we'll either get a definitive diagnosis or, at least, some advice on how to manage.
Can you pinpoint exactly what, if anything, started yours? We think that chickenpox was the starting point for ds...I've read that viruses are common as a starting point for M.E (obviously I suppose when it's also referred to as post-viral!)

x

[Playingthewaitinggame]

Hi Rabbit, Yes you are right. I get ill when and I am run down/stressed/overdoing it, then get a virus, still even now, I never "grew out of it" like I was told. Its always under those circumstances, still is. Thats why one of the names for it is post viral fatigue syndrome (as well as CFS and CFIDS).

Back then I was a very active person, doing lots of sports (rugby and swimming), loads of after school activities (voluntary work, orchestra, D of E, youth theatre etc), had taken 2 GCSE's the summer before and was preparing to take 12 more, so I probably was tired and run down and maybe a little stressed, without even realising it, then I got a virus and that was the catalyst.

What is really imperative is to try and strike a balance between rest and activity. Its very hard do but crucial in management. Too little activity and you are never going to recover (if a well person sat in a chair for a year they would struggle to walk afterwards) but too much activity and you make yourself worse. I always used to say on days when I knew I had done too much that I would pay for it in 48 hours! It must be so hard with one so young to get that balance though.

Also, family support and love was key, it is imperative to keep your morale up, as depression is so easy to fall into and makes ME worse. My parents also got a puppy, which was fantastic, something to give me joy everyday and a bit of gentle exercise.

I also saw an osteopath reguarly which helped keep me mobile first time round. I couldn't afford to do that second time and I did notice the difference. I am sure physio or accupuncture would probably have similar results.

I think you may get more help from the NHS than I did, 10 years ago it was only just being regonised by the GMC, in fact I was 3 months into my ME before it was an official illness. The medical profession didnt really have a clue. It may be a little better now but I would still say arm yourself with as much information as possible.

I am not an expert, particularly with young children, all I know is my personal experience, but there are websites out there as well and support groups (I have never actually joined them but they are a good source of information, for example Action for ME). I think they key thing for me has been learning to live with it through my adult life. I was told once I was "recovered" (which took about a year) that I would not be ill again, and some people aren't, but I have learnt to my cost that I can and do get ill still. Had a major relapse at Uni which took 3 years to get over and I feel the symptons now and then when I am run down and ill, I just make sure I eat well, sleep well and rest if I in any doubt over my health. I live with a policy of avoiding getting ill at all costs, any sign of a cold and I am off work till I am recovered!