Pre-teen with cerebral palsy, struggling with activities/hobbies

[BatMan23]

Hi, this is the first time of me posting on this website and I would appreciate some advice/help from other parents out there who have experienced similar things with their children.

I am a father of two girls, they are aged 9 and 12, with the eldest being affected by cerebral palsy (she is classed as GMFCS level II, she can walk unsupported for a short period of time but uses a wheelchair for long periods of travel - mentally she has no issues and she is intelligent). My youngest is able-bodied.

The problem I have had over the past couple of years is that I am really struggling with getting my eldest to be 'interested' in basically anything that is outside of TV, film or her phone (I monitor her usage and she doesn't do anything/watch anything inappropriate). She has since a young age enjoyed reading, I got her a kindle reader for her birthday this year, but she cannot sit and do it all day (I love reading and I can't). She has certain interests in animals, pokemon, and anything Disney related, but I cannot get her to try different activities with her sister, even something as simple as a board game. I know that at school she has struggled with holding a paintbrush or pen/pencil for long periods of time so asking her to paint and/or draw is like asking her to walk over coals. She doesn't have many hobbies as such.

I have had others say that at this age girls can be distant and not want to talk about things (we do talk about some things) and most of the time she likes to keep herself to herself. But I just don't want her to feel that I'm not trying to include her in activities that her sister would do with me. The last thing I want for her is to feel left out. I know she finds certain things frustrating because of her condition, which her mum and I knew from an early age she had - she was born at 23 weeks +6 and suffered a bleed on the brain at birth.

So to finish off this really long first post, I would like to ask if anyone has or is experiencing the same problems with their kids as preteens and is willing to share their experiences and/or advice. I am not sure what else to say so if there are any questions back at me I will do my best to answer them!

My DC don’t have SEN so I hope you don’t mind me posting. Feel free to ignore if it’s not relevant.
First up, all 4 of mine have been similar at that age in terms of being a bit more in their own head/ less keen to do things with siblings, and lots of hobbies got dropped around then. Between them they have picked up new interests around then too, some of which may be suitable (though some involve screens!). Horse riding was a big hit for DD (and the riding for disabled stables has the shortest waiting list near me!), Pokemon (which she’s already into), chess (including online), coding, plus (at school) they did eco warriors, school council, debating, mentoring, book club, choir, samba drumming.

Oh, and Duolingo! The youngest two are massively into that at the moment (Spanish and Greek, motivated by holidays!)

I second riding if DD enjoys animals. If you have a library close by they might have a book club DD could join if she enjoys reading?

With board games, what is DD like if it is a game that taps into her Disney or Pokémon interests? Or playing video games together (you can get adapted controls if DD1 struggles with controls)?

You could look at activities such as adaptive skiing, adaptive surfing, ability counts football sessions and super 1s cricket if DD is willing to try those.

Also, don’t understand how much more tiring everyday life is.

Thanks for sharing, I welcome any comments. The horse riding I have been advised by as being beneficial by her school. I share custody of my girls and so I have them with me every other weekend (and 2 nights during week, every week) so I guess I do need to ask the nearest riding stable if they could accommodate every other week, if my daughter is willing to try it. I have not tried chess with her, I do have a chess set. I haven't even thought about coding! I am trying to get her more computer literate as it will help her no end when she becomes an adult with how the world is now.

I get the picture that my daughter is very shy at school and has struggled to make meaningful friendships, which I know must be incredibly hard to deal with and I have no idea how to help with that. I believe they are trying to get her into different clubs this year to see if she likes anything, even if it is to listen and observe. She loves music but again she has no interest in trying an instrument from what I gather.

We do have Pokemon labyrinth but I think that is a bit confusing for her (although my youngest loves it). I do have a PlayStation and Xbox and she does enjoy gaming now and then (she doesn't need accessible controller) but most of the time isn't bothered, wants to watch YouTube videos instead.

I am not sure what groups are around us for sports as we are relatively rural but I will look. On the point re: tiredness, oh yes both mum and I have realised for a long time she is more tired than the average person. Come Friday when I pick her up from their mums after school she is usually knackered and doesn't want to do anything on a Friday afternoon/evening. Again, this must be incredibly hard for her to deal with everyday, but I don't want her using it as an excuse to not try something (we know our kids mannerisms don't we, and I know when she is trying it on).

Thank you for your post.

Other than the school encouraging clubs, what support is DD receiving at school? Has she had SALT and OT assessments and does she have ongoing input? They can help with social interaction. OT and physio can also look at fatigue management and pacing.

Yeah she is getting a lot of support at school. She has been on an EHCP for as long as I can remember, she doesn't haven't 100% one on one help in lesson but there is a TA that monitors her. They have adjusted her schedule to fit her needs, she doesn't learn extra languages at school (mums choice, not mine, but I think she struggles enough now anyway). She has had the necessary OT assessments and has an electric driven chair to move around the large school (same one I went to, I am still on the whole school photos on the wall by reception!).

There is a stables not too far away that could be suitable - so will be contacting them soon to determine if it is indeed suitable. Just got to work out if I can get both my girls riding at the same time!! As my youngest is nuts about horses and would hate me if I didn't get her riding too 😂

If DD doesn’t have ongoing direct physio, OT and SALT in the EHCP, you/DD’s DM can request an early review in order to try to pursue these. Riding or hippotherapy can also be included in EHCPs.

If she loves music and doesn’t want to learn an instrument what about mixing decks?

She may find online chess the easiest introduction if she’s online a lot- my boys like chess.com.
most riding schools would be happy with EOW- lots of kids (mine included) can only afford that!

Thank you again for your advice! This weekend has been frustrating - literally anything I asked for her to try/be involved in, flat no. Just got to see what I can do going forward. I will see what she is doing in school with regards to ICT lessons so if there is anything she is interested in then I can try and encourage her at home.

Not sure if you find it the same but trying to get information about her school day from my daughter is like trying to get blood from a stone!

Or a Clarion if she is put off by the lack of accessibility of many instruments to her?

https://www.openorchestras.org/

Maybe a trip to see an open orchestra might inspire her too.

I have a disabled child (completely different issues) and we have very much had to go to activities and providers that were catering specifically for disabled kids, for activities to last. Otherwise although they seemed to work initially it was just too much. I wonder if this is what you are experiencing too. Have a look on your council’s local offer website. You may find links to organisations offering activities that may be more suitable. You really do need to go searching for them though.

Hi there,

Thank you for your post. I didn't even know this technology existed, what an amazing piece of kit. I will certainly have a look into what is around me. Thank you for the advice.

I came across your post. My daughter also has CP in legs and also can walk unaided for a short while too. She's 7 but I also found it hard to find activities that are suitable. At the moment we are trying drama which she's enjoying. I put her to build her confidence. They do a bit of dancing, sing and acting. Hope you find something for her. I know how hard it is