Best way to help 12yr old chronically ill

[BrainFoggerty]

My 12yr old DD is chronically ill with a rare condition. She's going through a bad spell at the moment which means she's barely been in school since January.

She's in Year 7, the transition from primary went great but friendships were going through a tricky phase. Now who she thought was her best friend is ignoring her, moving on making new friends & largely forgetting her. Out of sight & all that..... Other friendships in school are new & a little tentative, she lacks the confidence to push them forward atm. No-one else is making those moves.

She's relying a lot on calls with friends to play online games atm but the calls are sporadic. I know she has so much more time on her hands & they are busy with after school activities, homework etc. She's amazing at dealing with it all the majority of the time but she does get upset at her situation & how it's impacting her life as well as the lack of care & understanding from her friends. Understanding from 12yr olds....I know!

How do I help her deal with this emotionally?
We're trying to get her back to school at least 1 class per day so she has a little connection & hopefully slowly build up. I've spoken to best friends Mum before now so I'm not going that route. We've bought & are going through a mindfulness book & she's started writing a private journal to help understand & process emotions. All she wants to do is spend time playing online games or watching TV - I do insist on some schoolwork when I know she's capable but not quite up for school.

All suggestions welcome

Could you find any groups for kids in similar circumstances who are not able to attend school or activities for health reasons? I'm sure there must be something (there's a group for everything these days) yes it will mean she is still connecting with them viritually but she may find some she clicks with and can chat to and game with.

I think it woild be worth finding others in the same /similar situation rather than relying on school friends when she's not in school.

Is there local authority support/tutors who might be able to point you in the right direction?

Thanks @Hellocatshome @OutlookStalking
A group for kids in a similar situation sounds like an idea worth investigating. She's a bit shy but something online might suit her.
I don't really know where to start looking for one, will see what Google throws up.
She really does need in person time with people too, online has never given her all she needs socially

Does DD’s medical team have access to a clinical psychologist or can they refer on to one?

Are the school providing support to develop friendships during the time DD is in school? After the initial phase you may be able to build on them by e.g. DD inviting one of the pupils the school helps to build friendship with to watch a film at home.

Are the LA providing education provision? Does DD have an EHCP? This can include emotional support and support to develop friendships.

@Imitatingdory sorry for not being on for a few days. Thanks for your reply.

No EHCP but school are being great, really supportive. Educationally we're keeping up a little but we'll agree a plan for catching up once she's feeling a bit more up for it. Right now we're aiming for her to attend one lesson each day, as much for the social interaction as learning. School are incentivising her too.

School have offered to put some things in place around the developing friendships but DD doesn't want that. She doesn't want it to be something that people are scheduled to do she wants it to be organic/natural. She doesn't want sympathy, just understanding from her friends. Also, she won't let me contact any parents to arrange someone to come over - she's not ready in the relationships so I have to respect that. School is talking to her teaching group & explaining how difficult it is for her to get into school atm & to be extra kind & thoughtful when she makes it in.

I guess I'm after something that can help her process all the emotions - & that I can work through with her as well. Her consultant has mentioned a physiologist but not put it in place yet, it's a new specialism for investigations for unresolved symptoms so we don't have an existing relationship & our review isn't for 2 months until we've had some tests done. I might email anyway as I'm guessing the waiting list is long

If you have any other thoughts I'd welcome them. Particularly around any help for me in how best to support her through it all. I've read various things but still feel like I'm swimming in the ocean

You should apply for an EHCP, IPSEA have a model letter you can use. This will enable DD to access support not otherwise available such as a clinical psychologist or therapies (art/drama/animal/gaming/CBT… whatever is appropriate) without the need to sit on waiting lists and over a longer time period to help her with her coping and emotions, and SALT and OT, again without sitting on waiting lists to help DD with social skills for her to build friendships. It will also mean DD has all the support she needs in school to allow her to spend as much time there as her medical needs allow. Emotional literacy support will help too, in some schools basic provision can be made without an EHCP. An EHCP can also include provision outside of school.

Separate to this the LA should also be providing DD with alternative provision e.g. home tuition or online etc.

Is there are support group for parents with DD’s condition either locally or online further afield? If the rare condition is genetic have you been in contact with Unique? The best things you can do is what you already are doing; listening to DD and seeking out support. Counselling for yourself may help too.

Thank you @Imitatingdory very detailed suggestions sounds like you have experience.

I'll absorb & look into what you suggest to see what we can get in place.

It is a rare condition, the genetics side of it isn't known as there's been no research into it as yet but I also have it so I believe it is genetic. It's also very hard to diagnose as the tests need very specific handling & there isn't a clear consensus which adds to the difficulties we're facing. There is a charity & a parent forum but nothing set up for the actual children, we're spread far & wide throughout the UK.

Agree I need some help to be able to support her