SAD drawings

illihor

Kayleigh (she's 4yrs old) started school last monday. She's happy although very very tired as most children starting school are. She's also in pain but hiding it extremely well. I know I can see it in her eyes, and how she moves yet she says no. Yesterday she wouldn't do the stairs as her ankles were hurting her. She's back to laying in one position only at night and not moving.

My concern is most children when they draw people/animals the mouth is always smiling if not then a straight line. Kayleigh since starting school I would say 70% of the pictures have SAD faces on. To make matters worse on the limbs she's done big red blobs. When I asked her about it she said they are sad as they got ouch and the red bits are the ouch.

Now to me on the day she's drawn this is the day that particular part of her hurt. She's got one where people are happy but dogs are sad and their legs have "ouches" on another it's just a sad face the girl has long hair and I haven't asked her if it's her as she didn't want to speak about the picture. Another is a full A4 size drawing of someone without legs :? (she says they to ouch to draw :? but she's got red blobs on the right hand and both ears. That particular day she was tired all over and her jaw/ear was hurting and her thumb on her right hand was sore. Yet she told school nothing and they never said anything.

I can only assume she's drawing herself and how she's feeling it's the first time she's ever done sad faces and stuff like this. She has only been in half days on Monday she starts full time but she will only be in that one day next week as we've got to go Bristol Hospital till Friday for Physio am hoping I can speak to someone there about it also I want to speak to school about it.

Why is it so hard being a parent sometimes and knowing what to do for the best

Michelle xxx

speedalong

Oh Michelle, my heart goes out to you and Kayleigh.

You are right about the little ones getting so tired when starting school ... I used to teach reception and some of them would pop their thumbs in their mouths and nod off during the end of the day story!! And these children weren't having to struggle to do things like Kayleigh does.

It is great that she is using drawings to express her feelings as this is at least an outlet for her and also an indicator for you, especially as she isn't keen to talk about it.

I think you are wise to bring this up at both school and the hospital - they might be able to refer her to a play therapist or similiar to help her express and deal with her feelings or someone who can advice and support you to support her.

She sounds an incredible little girl and very stoic.

Good luck with the intensive physio sessions next week.

Speedy

worriedmum

Hi Michelle,
What a heartbreaking thread to read - though like speedy says, actually it's a great outlet for her and a very age apropropriate way of expressing herself.
My daughter is also 4 and a half and treated by the team at Bristol. I know they are very supportive and I'm sure the specialist nurses would be happy to put you in otuch with their play therapist to try to understand better how Kayleigh is feeling, through play and simple conversation if she's not keen to talk much about it.
Also, I think its vital that the school play an active part in her emotion support as well as just the teaching. It might be a good idea to ask a more local Physio/OT to visit school to talk to them.
The physio team at Bristol are also fantastic (do you see Ginny?) though it must be tough travelling for these intensive sessions and extremely tiring for you both, especially little one.
Freya started school last week too and you're right, it's tiring without having to deal with pain and anxiety aswell. Poor little things have so much to cope with - and don't they do it well! Freya had a joint injection on tuesday and started school wednesday. She has school in the morning tomorrow, then physio, then Uveitis clinic and a shot of immunoglobulin varicella in the afternoon to protect her from a bout of chicken-pox going round her cclass but at least for us, it's only twenty minutes down the road. The travelling must be really hard.
I hope you get some help with how to support your little one emotionally. Ask the Bristol team, cause they're great and i am sure they will be able to help with this.
Sam.xxx

only49

there's is no doubt about it, being a parent is one of the hardest jobs in the world, all you can do is your best and no more and be there for her, and also be someone she can confide in, sounds like your doing a great job, not much fun for any of us having to live with the pain, but she must find it difficult and probably dont like to complain.

I know its easier said than done but try not to worry just listen to her and reassure her, you know her better than anyone.

illihor

Thanks for your replies.

Sam, we are in Plymouth a good 2 hours on the train (not fun on fasting trips for a GA like the last two so at least she can eat this journey). We normally have our physio sessions in Derriford (in Plymouth) but when Dr Clinch came down here in April she mentioned it then when we went Bristol and Dr Ramanan did joint injections end of July he pushed for it to be done. It's gonna be hard leaving my other 3 children for it. The last time I spent time away was when I had to spend 2 weeks in hospital having my last daughter as I had pre-eclampsia, but they came and saw me everyday, not quite the same so far away.

She's in school all day tomorrow I think that's gonna be harsh on her then I've got to wake her at 6 Tuesday morning to get ready to go as got to be at train station for 7.00 gulp. I'm hoping Helen will be there or at least I can speak with her might get the nurses to see if she's around and come see us and have a chat with her about Kayleigh as she seems really good and listens to my concerns seriously. I have her number but don't like to just call them, I think if it wasn't for this visit I might well have called about this. We have seen one physio in bristol but I can't remember her name as this was back in December before treatment started.

Kayleigh is a very shy girl at first but soon opens up, but she doesn't like to speak much as "they don't understand me" she refused to speak in nursery till May (she started in September) she is having speech and language as her speech is not clear at all. We've had an outreach teacher for physical disabilities visit our school about her and is getting a symbols book made up but we've got to tell her words she has problem with, I can't think of them lol I hear them and understand it's very hard to know what others can't understand. I know a few but most I've learnt not like cut is shet if you put your hands over your ears and try and hear people that's how she speaks very muffled it's because she suffers with glue ear badly on both sides but they don't want to put grommets in, so I think her drawing pictures is very good but I need school to understand this and even if they don't say anything to her at least acknowledge that she's in pain and set her aside. They've even got a special quiet place just for her when she's bad to go lay down but it's not being utilised properly as she's not saying but I think they should make her go ly down twice in the day even if only for 10 minutes with a book but it might give her the break she needs instead of trying to continue and hurting more because of it.

Michelle xxx

speedalong

Wishing you all the best for the week.

I think you are right Michelle about her having timetabled breaks in the quiet room. If she had any special friends perhaps they could go too or the others could be on a rota to join her as a privelege.

When I was at school I had a friend with RA and she used to go and rest in the medical room and I often used to visit her at break/lunchtimes etc as she needed the rest but felt isolated. Sometimes we talked or just read etc. If I found her asleep, I'd leave her to it.

Speedy

illihor

speedalong wrote:

Wishing you all the best for the week.

I think you are right Michelle about her having timetabled breaks in the quiet room. If she had any special friends perhaps they could go too or the others could be on a rota to join her as a privelege.

When I was at school I had a friend with RA and she used to go and rest in the medical room and I often used to visit her at break/lunchtimes etc as she needed the rest but felt isolated. Sometimes we talked or just read etc. If I found her asleep, I'd leave her to it.

Speedy

Thanks so much for that. Really helps me feel better about making these decisions for her although I hate it. But after only one week at half days and seeing how she's gone I think it's for the best. I know they all get tired when first starting school I have two older boys whose both been there done that type of thing but this is different. Her attitude tells me she's tired from school but it's her body movements and the lack of appetite she's suddenly got makes me believe differently.

I didn't want to come to this and wanted the school to be able to judge (after all they've had her for a year, as the nursery and reception children area ll in one unit called foundation unit, it has seperate rooms for class teaching but everything else is all open planned) but they could never get it right when she was in nursery either and I would have to pull her out half days or send her in late etc which I don't want to do now she's in full time ed. Another thing that gets to me is they aren't looking after her at lunch times properly and can't even tell me what she's eaten considering they have to give her ibuprofen which they know needs to be with food and they can't even tell me that.

Michelle xxx

speedalong

Michelle it is hard isn't it.

I have fought care issues for S since what feels like forever ...

Having scheduled rests would definitely help especially since the staff don't seem to recognise when she is struggling.

Does she have school dinners? Would a packed lunch be better - then she could bring home what she hasn't eaten? Otherwise would you be able to get a copy of the school menu - then perhaps if you devise a tick/circle chart or similar, Kayleigh could be taught to show her plate to the dinner lady before she scrapes away and she could mark the sheet - with a code to say she ate all of her meat or just a taste etc. Worth a try ...

Anyway thinking of you this week.

Speedy

worriedmum

Hi Michelle,
Saw Helen today myself and I agree, she i always good at listening and answering questions you have
I hope she'll be able to provide you and Kayleigh with the support you need.
Hope the physio goes well. We were there today too!
I think Speedalong makes some really practical suggestions - I wish I was so inventive! I would try some of them as they sound like brill ideas. That's why this site is so useful.
best of luck thisweek, let is know how it goes.
Thinking of you
Sam. xxx

illihor

Thanks both of you although I might end up not going there Had a phone call from them at 4pm to tell me can I swap to next week (which I can't as she starts enbrel which I'm not changing again already delayed starting it this long), i also said I've already booked and paid for the train tickets to which she said Yes Helen said that to me well call up first thing so I said if that's the case it's going to be 6am (we have to be at train station no later than 7am and I'm not waking her an hour earlier if I don't have to), and she said that's fine they work 24 hours and gave me the number and bleep. I seriously doubt we'll be going as she said not to get hopes up as there probably won't be any beds left. So why not just say we have no beds make it a different week instead grrrr I know if sicker children are there they need the space but to leave me hanging like this is quite franklyk annoying either tell me one way or another don't say well call in the morning just in case I'm not even going to bother packing as if they don't have the space today at that time they are hardly going to kick children out that this late at night :9 I've already told her that she might be going school instead.


Another quick update just called the hospital they have yet to do ward rounds to find out if any children are going home in the morning but as of now there is NO beds available so looks like schoo lit is still have to call at 6am though

Michelle xxx

worriedmum

Rubbish! So sorry. We had this the other week and her joint injections were deferred for a month cuase of no beds but at least we didn't have the journey to deal with and all the planning. Even so it's the emotional planning you do as a parent, getting yourself and everyone else in the family prepared, especially the patient! I know there are limitations -- i work in the NHS so I do understand that often this just can't be helped but bloody hell, it's frustrating!
Hope they can reschedule soon.
Take care
Sam. x

andylambs

So sorry to hear that Kayleigh is drawing sad faces, it must have been awful for you to see what she'd drawn.

I hope the hospital get you sorted out. It makes me so angry that they can't treat children when they say they will. Grrrr...

Andy