8 y/o girl suffering with Hypermobility school affected

[AngeF1984]

Morning all,

I was wondering if anyone LO have had issues with their hypermobility and school attendance.

Long story short, my youngest who has ASD has it and it really knocks her off her feet sometimes. She did a hard PE lesson a couple of weeks ago and couldnt walk for 2 days after, well she could but was agonising for her, causing her to cry and have to be carried up and downstairs.
Monday was PE and yesterday she was on a school trip and did a lot of walking, so this morning is in pain again and off school. Its always her legs that affect her most, or occasionally shoulders and neck and lower back.

She injured her tailbone somehow a few momths ago and still uses the lumbar cushion when sitting on hard surfaces.

She has had a couple of physio apps, but I struggle to get her to do the exercises shes been given, i even offer to do it with her.

Ive noticed that the pain occurs if she gets poorly with any type of other illness, so I think it may be inflammatory too.

Because of this, she has missed a lot of school. Adding to the days of hyper pain, shes also missed school for various bugs etc and covid and strep that she picked up from school (she does not get sick during the school hols) her attendance is at around 50% and education welfare officer is involved (very lovely lady and understanding).

My problem is school (who were the ones to pount out symptoms of ASD and hypermobility) started reporting her absenses as UNAUTHORISED and did not tell me. They did not ask for any medical evidence. I have now started to take pics and vids of her when she is sick, as they seem to think I am lying. This is the only year that her attendance has been this bad, its usually in the 90%s.
I always tell them they are welcome to round and see my daughter but they dont. Its not like we are out gallivantung, she is usually laying up on the sofa with heat pack on her legs etc. All 3 of my children went to the school, but now i feel resentment to them for the underhandedness. The SEND is fantastic, but something is going wrong somewhere.

Not sure what im asking for, just need to talk i think.

Thank you xx

Im hyper mobile and really exercise is the only thing that helps but getting a bairn to do something like that, never mind one with SN is going to be hard. The general pain even without injury is enough to make you want to scream. Bless her heart man.

Does she have her EHCP yet, it really should be added in there?

Challenge the unauthorised absences as they should be authorised.

Does DD have an EHCP?

If DD can’t attend school full time the LA should be making alternative arrangements instead of/as well as attending school part time (depending on what’s best for DD). This provision should have begun once it became clear DD would miss more than 15 days.

Thank you for replying.

There is no EHCP, i just had to google that as its not been mentioned before, we dont get much help. Her issues have gotten worse as she has gotten older.
I think because she is high functioning and plodding along, shes not seen as in need of that x

Thank you for replying.

I dont think they would allow this. The head used to be amazing with DD, but since her abcense has risen so much this year, its like shes taken a dislike. When I questioned the unauthorised abcenses and re explained DDs issues, the reply was "im sorry, i didnt realise she was having them issues". Completely side skirted the not telling me they were unauthorised.

Im also waiting for a meeting to be set up at school with the EWO. Ive chased it up twice, but its not been arranged yet x

You should apply for an EHCNA yourself. IPSEA have a model letter you can use.

You don’t think the head would allow what? The LA must provide provision if DD is unable to attend school. That is law. If they don’t you can force them to, via judicial review if necessary. The HT can’t veto that.

I wasnt aware that I could, ive had little to no help as shes gotten worse.

I will have a look now, thank you xx

Eh? She needs an EHCP. Her needs are going to change as she gets older. There are clear medical needs that need to go in as well as her needs for ASD that will change. Don't be fobbed off by the school.

I'm hypermobile and Autistic. Myself and DD (11) have Hypermobile Ehlers-Danlos Syndrome (EDS) so please look into this. DD is also currently undergoing an ASD assessment.

We've had a couple of years of nightmares with school. We are now getting there, thankfully. I'd echo what others say about getting an EHCP. Also as well as physio, a podiatrist. My DD sees hers every 6 months and gets new orthotics. Look up EDS and see if it fits. If so, ask GP to refer to Rheumatology or Genetics via Paeds.