Sorry for not being around...

[Bagpuss]

Dear All,

 

Sorry for not being around much past few days. Things here have gone abit pear shaped with youngest DD. You probably will not remember, but we had her annual review in November, and DH & I spent a long time agonising over whether we should opt for a special school we'd visited for her placement come September, or stick with the school she is at (mainstream primary, in a SN assessment class). We had initially decided to opt for the special school, until we received DD teacher's report home, and she'd stated that DD had expressed a preference to stay at her present school, and move into the junior support base come Sept. When we spoke to DD, she became adamant that she wanted to stay put, and her initial positive reaction to the special school evaporated. Eventually, we came to the conclusion it was best to leave her where she was. She had always been happy there, and had made excellent progress since nursery. There had been no issues surrounding her behaviour, and we counted ourselves really fortunate in many ways that we were not having to deal with difficulties many parents that we've met, and on the forum, were dealing with. We felt her happiness was paramount, and at the annual review the EP and her teacher agreed the right decision had been made. We all agreed that the special school we visited would probably be a suitable choice for DD once she left primary school. Her teacher said that she had been concerned that our choice of a special school for DD would make her "more disabled", and that DD was a child who "copied behaviour" but having read our views and reasons why we had initially opted for this, she could understand why we had been drawn to this option.

 

Since DD returned to school in January, she has become increasingly tired. We are unsure if this is due to the MD or not, but she is tiring much more easily. Her behaviour has also become very volatile after returning home from school. Although she sleeps very well, getting on average 10 hours per night, she is up early for transport. Her teacher began to report in her home/school diary that DD was becoming tearful and weepy. That she was complaining of tiredness and was "out of sorts". A panel meeting was due (today). They are held every term at the school, and attended by teacher, EP, LEA, SALT etc, to discuss the progress of each child in the assessment class and any future recommendations. Parental views are sought via a form.

 

Earlier this week DD's teacher rang me. She said that she wanted to discuss the panel meeting and our parental views. She said that she was concerned about DD. That she was tired frequently, weepy, would not engage with anyone or anything, aimless, insisting on everything on her own terms, and was obviously unhappy, and that this had been since returning to school after the Xmas hols. She said that she felt that although DD was bright and was managing the academic side of the school day, she now felt that DD would be better placed at the special school, and what were our thoughts on that. I was really taken aback. There had been no indication that the problems DD was experiencing were serious in any way.

 

She said she could make this suggestion at the panel meeting if we so wished. I said I'd have to talk to DH and let her know the following day. DH was really shocked too. We havn't received DD Statement back yet either from the annual review in November, although her teacher said we should of done. We've told DD's teacher to go ahead with the recommendation at the panel meeting today.

 

I feel really sad, but I don't know why. It's weighed heavily on my mind since the conversation I had with her teacher. Feel really daft, as we like the special school, and I do have alot of respect for DD's teacher, and trust her opinion.....so I have no valid reason for feeling so empty and upset about it. There will be many positives to be gained from her attendance at the special school....feel really ridiculous It has just been such a shock and come out of the blue.

 

I'm unsure what will happen now. The panel meeting at school takes place later today, and we've told DD's teacher we will speak to her on Monday to discuss what took place, because she said it will finish after the end of the school day so she can't let us know today. We are unsure about how this will effect her Statement too, and how far along they are in finalising it. There will be a representative from the LEA at the panel meeting, so I'm wondering how much clout he will have. Unsure if he can decide which school DD will attend, or if it is a foregone conclusion that she will automatically be given a place. Maybe they could reject DD's teacher suggestion.....who knows.

 

I'm already beginning to feel edgy about the proposed move and all that it will entail.......even silly things like the transport situation is worrying me. DD has had the same chaperone since nursery (apart from when she was on sick leave), and DD adores her. I've always had complete faith in her and felt at ease with DD getting on the bus. The thought of saying good bye to her makes me feel chocked I know I need to focus on the positives that will come from the move.

 

So, just wanted to let you all know why I've not been about. I've had a few messages, and just wanted to put everyone's mind at rest. Don't like to post when I'm feeling pooh, because I think peeps don't need my negativity, on top of their own problems.

 

Will be posting again in a few days.

 

Take care everyone <'>

[Karen A]

<'> <'> Baggy I hope the panel come up with some supportive ideas today.Sorry you are feeling pooh.Karen.

[pearl]

<'> Baggy I was wondering where you were.

How unsettling & upsetting for you.

JP had the same TA for half his life & we adored her, so know what a wrench that would be.

And please post when you are feeling pooh, we all do it & would like to support you too.

[LizC]

<'> <'> Oh I hope they have a decision for you soon! It can be an emotional rollercoaster trying to decide what is right and best for your child! but I am sure it will all work out for the best. It was really sad when Matthew had to leave mainstream, he loved the teachers that were in charge of looking after him. but he has grown to love his new school and the lady that helps him on the bus! at the end of the day she needs to be where she is going to be happiest the most!

 

well see you soon baggy!

[Clare63]

Baggy ~ <'> <'> <'> <'> <'>

I too have wondered where you had gone and have missed you very much.

Your poor wee DD, sounds like she is struggling, there is nothing else underlying this that might be the problem that could be resolved fro her current school.

Think its quite understandable to feel how you do, although the special school was an option you had looked into and considered before, it was no doubt still an enormous shock when it becomes a reality, it's all the why's, what's and if 's that open up all the old wounds again and leaving you feeling raw and emotionally.

I felt sad to read that you avoid posting when you feel pooh, please don't feel that way you are always here for me and I would like to repay you, when things are low or bad for you, by offering my support, I am sure amny of the others feel the same.

Take care Hun, and be gentle with yourself.

 

Clare x x x

[Kathryn]

Hi Bagpuss,

 

<'> <'>

 

Lots to think about and digest.

 

I can understand if you need space to think about it all, but please don't feel you have to avoid posting negative stuff. People care and want to support you - that's what this forum is for.

 

Thinking of you and I hope the meeting goes OK.

 

K x

[brooke]

Im so sorry your feeling low <'> <'> I really hope you get things sorted out soon and have a bit of peace of mind - it can be such a worry when there is change. I hope you feel you can come on here for support you are the kindest nicest person and are always here for everyone <'> I wish i could just pop round for a coffee. I really hope you feel a bit better soon <'>

Brooke

[cmuir]

Hi

 

What a real shame, sounds like things have been a real rollercoaster for you all.

 

It's always shattering to feel like the right decision has been made after much turmoil, then suddenly all change again. I guess something really positive has came out of this and that is that the teacher sounds supportive and she's also offered an opinion based on what she's observing in school (I could do with a 'fly on the wall' in my son's class!). I think it needs to be borne in mind that the kids haven't really been back at school that long since the Christmas holidays, however, it does sound like your daughter is having difficulty with something ie work, coping in that environment, socially, etc. However, you have to do what you feel is right for your daughter based on your own gut instinct, school reports, etc and take into account your daughter's feelings to a point.

 

My motto is 'if you don't try, you don't know'. Things can be changed, albeit with varying degrees of difficulty!

 

I recently had to 'let go' of a social worker that was excellent. She worked with us for two years, pre-diagnosis. Things were incredibly difficult for us as R is challenging to say the least (little monkey phoned police last night because I came went to a keep fit class and he didn't want me to leave him!). She observed us as a family unit as well seeing R on his own (she'd take him for short outings eg swimming, zoo, etc). She was genuinely the only professional to 'see everything' and was a godsend in terms of backing me up when needed with other professionals. It was incredibly hard saying goodbye to her (I had to bite my lip so as not to cry at the last meeting). She's a true gem. So I can really emphasise with how you're feeling about change eg your daughter's chaperone. Sometimes, it's a lot easier to change or say goodbye than you might think.

 

Guess, just wait and see what comes out of the meeting and I'm sure you'll all make the right decision.

 

Keep the chin up!

 

Caroline.

[Guest Lya of the Nox]

<'> ><

you know where i am

x

[loobylou2]

Take care Baggy. Please don't stay away, we are all here for each other in the bad times as well as the good. <'> <'> <'>

[oxgirl]

Aw, sorry you've been feeling pooh, Baggy, wondered where you were. <'> <'> It must have been a real shock after all the deliberating and worrying you did about the school situation and thinking that you'd arrived at the best decision, to suddenly have to readjust your thinking yet again and come round to a different scenario. It's bound to be unsettling and upsetting for you all. Give yourself some time and tlc to get used to the new situation and hope you start to feel better about it soon.

 

Take care. <'> <'>

 

~ Mel ~

[baddad]

<'> <'>

 

BD

[bid]

<'> <'>

 

I think the special school thing is a bit like getting DLA...you want it, then when it happens it is saying in black and white that your child has significannt difficulties.

 

Be gentle with yourselves <'>

 

Boho

[David Matthew Baker]

<'> <'> <'> <'>

 

I hope things get sorted quickly and that you feel more confident once things have been explained more clearly. All the best, David.

 

<'> <'> <'> <'>

[Nic m]

I hope you feel a bit better soon

take care

nic

[Frangipani]

Baggy

 

Oh that brings back very painful memories <'> <'> <'> <'>

 

Mainstream vs Special school

 

Take your time hun its a Catch 22 decision.

 

 

Love Frang xx <'>

[Tally]

Bagpuss <'> >< <'>

 

Post as much as you need to. If it were all good news, this forum would not exist.

[smiley]

<'> <'> <'> <'> <'> <'>

[forbsay]

Sending you lots of hugs.

 

Before M went to school, I had this secret dream that he would go to a mainstream school......................however we opted for a special school. It is one of the best things I ever did for him. When we got the letter through saying that he was going to the school of my choice - I burst into tears.

 

I think Bid's post sums it up. Sorry not sure how to do quotes but we won't go there.

 

Take care

 

Forbsay

xx

[elun1]

<'> <'> <'> I only just read this. So sorry you're feeling bad - please feel you can post when you feeling low. Sometimes it really helps and no-one minds.

Lots of love, Elun xxxxx

[Bagpuss]

Hi All,

 

Thankyou so much for all those lovely replies

 

All ok here...will be ringing DD's teacher later to see what happened on Friday at the meeting.

 

Thanks again <'>

[Clare63]

Welcome back Bagpuss ~ <'> <'> <'>

 

Clare x x x

[Bagpuss]

Hmmmm, abit unsure now.

 

DH rang DD's teacher earlier. She said that at the meeting on Friday it was agreed that DD did seem to be struggling, and the special school may be needed, but they had all decided to monitor her till Easter, incase it's just a blip.

 

DD's teacher told DH that DD had been tearful again this morning, and was asking for me.

 

She said the Statement is out 8th Feb, and the Junior Support Base will be named on it (which had previously been agreed at her annual review in November).....she thinks it will state that special school may be required if JSB isn't suitable (which she has told us last week she feels it isn't any longer).

 

Really confused about where to take it from here. Should we reject the Statement when it arrives? Should we remove DD from school if she is so unhappy? Should we leave them to do their job, and monitor her?

 

She did say that part time education was an option, although DH said he got the distinct impression she did not agree with this, and had possibly been advised that it should be mentioned to us, as a possibility.

 

She also said the the rep from the LEA would look into the special school option. Unsure what this means exactly though.

 

 

I just want to jump in the car and go pick her up, and keep her home with me Feel so awful, and it's made worse by the fact she is saying very little to us about how unhappy she is

[Clare63]

Awwwwww Baggy ~ <'> <'> <'>

 

Clare x x x x

[hev]

baggy as you know ive never any constructive advice!!!!but i will say dont stay away when you feeling low,you are here for all of us when we are low,you are one of the lovliest kindest people ive ever met and i dont give compliments lightly so it must be true <'> ive cried to you a few times when steve first went to residential,im here for you any time <'> <'>

[oxgirl]

you are one of the lovliest kindest people ive ever met

 

I agree with that, and I haven't even met you!

 

Sorry that the meeting seems to have made things even less clear and that your little one is having a tough time. Must be so heartbreaking for you to hear she's been crying for you. Is she feeling okay physically? There's a lot going round at the moment and I know with my Jay how hard it is to ascertain if he's feeling poorly or not. Is she finding the work a bit challenging at the moment maybe, they do seem to step things up suddenly in the early years, don't they.

 

Hope things settle down soon and you find the answer that's right for all of you. <'>

 

~ Mel ~

[Bagpuss]

Crikey you lot, your blooming setting me off again

 

Seems she had an ok day as it progressed. Teacher thinks the MD is beginning to have an impact, making her tired and weary. This is leading to her being less willing to do anything and wanting everything on her terms. If your physically exhausted, you are more likely to react the way she is I think.

 

I dunno, been wondering what to do for the best. Think we'll have to have a look at the Statement when it arrives, and take it from there.

 

Things arn't too clear at the mo, and perhaps that's what is troubling me.

 

We tried to get her to open up when she got home from school, but she's having none of it. She says she likes school

 

Thanks again <'>

[Guest Lya of the Nox]

so if she having physical difficutlies then can they arrange for rest time for her

instead of playtime and pe, maybe a soft area, book corner with a mate??

thinking of you all loads

xxx

[Bagpuss]

Thanks Lya <'>

[elun1]

<'> <'> Thinking about you Baggy <'> <'>

[Bagpuss]

Thanks Elun <'>

[forbsay]

Thinking of you all.

 

Take care

 

Forbsay

x

[Bagpuss]

Thanks Forbsay <'>

 

Unfortunately, looks like things are not improving. When she was dropped off tonight on the transport, the chaperone said her teacher hadn't had time to fill her home/school diary in, but had told her to tell us that DD had had a good morning, but an awful afternoon.

 

DH finally got her to open abit tonight about school. She has told him she doesn't like "brainwork", that it's too hard. That it's boring. That her teacher gets cross when she can't/won't do it. That she's tired, her legs hurt. That she "hates" a boy in her class (she's had alot of conflict this with particular lad). That she wants to stay at home with me. She doesn't want to change schools though......although I think that's a fear of change, rather than a reality. I don't think she can envisage going to a different school and what it entails.

 

DH has to go into school tomorrow, to collect her for a hospital appointment, because I can't drive at the mo, so he is going to have a word with her teacher, and find out exactly what took place this afternoon. We both feel it's pointless to monitor her, and we need to implement a move.

[mossgrove]

Baggy

 

I have only just caught up with this thread. I recognise a lot of what you are going through as we went to hell and back trying to keep DS1 in mainstream.

 

Ultimately mainstream wasn't for him and he is now half way through his third year in Special School. Taking him out of mainstream was the best thing we ever did for him and we have no regrets at all about the decision.

 

I hope it works out for you too.

 

Simon

[oxgirl]

Aw, so sorry Baggy that your little girl has had a rotten afternoon. It's good that she was able to tell your DH a bit about what's upsetting her, though. Hopefully, she'll be able continue to express her feelings about school at the moment now that she's started. Good luck with finding a right decision. <'>

 

~ Mel ~

[Bagpuss]

Thanks all. Feel we really need to start getting the ball rolling now with regards to a move to the special school. Will update later when DH gets home and I know what took place with DD yesterday afternoon, and how his chat with her teacher went this afternoon. Her hospital appointment is with the muscle team, so hopefully they may be able to give us some indication of any progression re the MD, as her teacher feels this is beginning to take it's toll on her too.

[hev]

hope she ok today baggy <'>

[Clare63]

Bagpuss, thinking of you and yours.

 

<'> <'> <'> <'> <'>

 

Clare x x x

[Bagpuss]

Thanks again <'>

 

I was hoping to have some answers tonight, but it wasn't to be. When DH went to school to pick DD up for hospital appt, he discovered her teacher was on a course, so he couldn't discuss implementing a move to special school. He had a chat with the assistant, and explained how we felt. He said she was in complete agreement with him and said she would get the teacher to ring me tomorrow. So, still unsure how it will pan out at the mo. Hoping the teacher is still of the same opinion she was last week, and that she can advise us on how to proceed with her full support

 

With regards to the muscle clinic, again, left with no answers. Trouble is, everytime you go, you see a different doctor, and spend so long discussing DD's history and repeating yourself. They don't know DD, havn't met her before, and it's so frustrating. I really wish we had continuity of care with this team, as they are the best in the country....but we always end up seeing a doctor visiting from another country. They are unwilling today to commit to whether DD is deteriorating. It is so rare for a girl to develop her type of MD, that they can't say for definate. They score her each time, running, getting up off the floor etc, and these seem to be the same as last visit, so that's good news. However, they noted that when she got up off the floor, she used a particular movement, classic of MD, resulting from weakness. Her respiratory system is good, which is one area that can be horribly affected, so again, that's positive. They are going to write to DD's physio, to advise her, because she is suggesting DD does things like jog on spot, jump on spot, which we feel unhappy with, and they feel that won't help. I think it's ludicrous, that a child which is visibly physically tired at school, is being encouraged to do these exercises....she should save her energy for the playground if needs be. The muscle team did offer to go into school, to advise them re the MD, but DH declined, and said he felt it was best to wait and see what happens with possible move.

 

Can anyone answer this question for me? We know DD's statement is coming out on the 8th Feb, and we've already been told by DD's teacher that it will be naming her present school, as agreed by us all in November at the annual review. However, now DD's teacher has said she would be better off at special school, how do you reject the Statement? I'm assuming we have strong grounds for doing so.

[mossgrove]

If the statement does come out it isn't the end of the world. You should write to the LEA requesting a review of her placement because the circumstances have changed.It would help immensley if the schoolcould say they are no longer able to meet her needs. Be careful to emphasise that you feel the school have done asmuch as they possibly can but you now feel hers needs can no longer be met by a mainstream placement.

 

Good luck!

 

Simon