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Worried to death about ASD dd with ulcerative colitis

(8 Posts)
downbutnotout Sun 19-Feb-17 09:35:23

My dd (now nearly 13) has always been in mainstream education and was diagnosed with high functioning autism two and a half years ago, although it was clear that she was struggling socially for some time before that, but academically speaking she did well at primary. However, secondary has been a different story. Issues with tummy pain and not wanting to go to school were initially thought to be psychological difficulties, but eventually she became seriously ill, was diagnosed with ulcerative colitis and was hospitalised for two weeks last year while they got it under control.

Though she is now mostly better (she still has low grade symptoms), it has become very difficult to get her to school at all. We did not have a particularly close relationship before her illness but now she has become clingy and dependent on me (not surprising, I know). I have to sit by her beside every morning to make sure she gets up and dressed, and if the slightest thing goes wrong with her morning routine there is a meltdown (she cries like a toddler) and I know I will be lucky if I get into school at all. I am told she barely interacts with her peers at all at school. She has a few friends, but those friendships are often maintained by me. Though she has a phone, she doesn't text or phone people and no-one texts her, and visits by friends are always initiated by me through parents. Though she is, or at least used to be, an avid reader, she has withdrawn into a world of screens much of the time. At school she is escorted to and from every class by an LSA, I think largely to ensure nothing is said to her by other children that might cause a meltdown. When she's at school I'm not sure how often meltdowns happen as I don't know how good the school are at recording them, but her academic achievement is falling now as well, hardly surprising when she is on 60% attendance.

She is not statemented, when she was in initially diagnosed we were told there was no point in applying for one as her academic achievement was too good. Given all her problems, I am now contemplating whether mainstream is still the right place for her, but it seems my options are limited without an EHCP. I am worried sick about her and her prospects of getting the education she deserves and leading an independent life. I'd welcome advice about applying for an EHCP and also how I can help socially. I feel like I have been sleepwalking while her world falls apart and I don't know what to do sadsadsad

PolterGoose Sun 19-Feb-17 10:52:54

Message withdrawn at poster's request.

Ineedmorepatience Sun 19-Feb-17 18:04:49

Hi Down, yes I took Dd3 out of secondary at the end of yr 7. Well actually we just stopped sending her.

You can apply for an EHCP anytime and I know of home ed families who have managed to get a plan while home edding.

For us Dd3's mental health had to be a priority. Actually GCSE's can be done any time or a few at a time and many colleges offer courses at different levels to allow people to get to where they want to be.

Some colleges offer courses specifically for home ed kids age 14-16. The groups are smaller and they are part time and include maths and english Gcse + others if you want them.

We are looking at specialist provision for Dd3 at the moment but we also probably have the option of tutors paid for by our authority if the specialist provision doesnt work out.

Dd3 has a statement which is being converted to an EHCP, I would recommend at least starting the process as it can stay in place until 25 if your Dd needs more catch up time.

Pm me or ask on here if you need anymore info. Oh and my Dd3 was a school refuser due to anxiety from the 2nd week of reception so I understand how hard it is.


Ineedmorepatience Sun 19-Feb-17 18:06:19

Look at as well smile

downbutnotout Sun 19-Feb-17 18:40:34

Thanks for this - it is appreciated. Unfortunately I don't think home ed is the answer for us. My dd has extreme difficulty in accepting instruction from me about anything, even the little bits of help I try to give her with social behaviours are dismissed out of hand ("I know that - everyone knows that!"), though she clearly has massive social issues and could use the help. Helping her with her homework often results in meltdowns too, though I am gradually getting better at it. And she is not very motivated on her own behalf. I think without the structure of school I would struggle to get her out of her bedroom some days. Plus I work part-time in a job I really need to keep if possible, although obviously I will quit if it is absolutely necessary.

She also can't/won't discuss any kind of emotional issue or say that there is anything she doesn't like about school, except for two very specific subjects she's not keen on. As far as she is concerned the only reason she won't go is tummy pain and it seems pretty impossible to get her to see it any other way. We do have Ed Psych involvement but that will end soon, then hopefully it will be picked up a clinical psychologist from her gastroenterology team, but I don't see that we have anything but a long and difficult road ahead.

Ineedmorepatience Sun 19-Feb-17 19:28:20

Dd3 doesnt do formal sit down learning. We do learning through life. We do history in real castles, geography in real rivers and lakes and on beaches. We do maths in the kitchen or supermarket. We do PE at a home ed horse riding group or on scooters in the park or at the swimming pool. We do day trips while places are quiet and have holidays in term time.

I totally understand that home ed is not for everyone but I also know that preserving mental health is really important and that some people just arent a good fit for school.

We had one rule when Dd3 left school and that was that we must leave the house everyday. We started off small with walks in our local park and hot chocolate in cafes and and we spent 12 months de schooling because she was very traumatised by her experiences.

As I say its not for everyone but for us it has been a lifesaver. Dd3 has come so far and is now looking into the future and planning her steps to Uni. I am led by her and she is making great choices.

Good luck whatever you decide. smile

downbutnotout Sun 19-Feb-17 22:49:11

I'm definitely not dismissing home ed, it's just her social issues are quite severe and she seems to have regressed since her illness - she would gladly have me interact with the world on her behalf. It's difficult to see a future where she has any meaningful independence right now.

Ineedmorepatience Sun 19-Feb-17 22:54:01

A slow and gentle recovery in a nuturing environment might help. Dd3 had always been totally reliant on me to meet her needs and to be her voice but slowly and surely she is gaining confidence and with that independence. We have a way to go dont get me wrong but I can see more progress in the last 18 months than we had in yrs before.

Maybe getting an EHCP would give her access to extra support and possibly even a smaller setting where she could begin her recovery.

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