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Feeling sad that I can't seem to help ds1 at the moment.

21 replies

moosemama · 25/06/2012 11:01

Just a self-pitying thread really, because I've been tying myself up in knots this morning, am sitting here crying and I need to pull myself together, get dd out of the bath that she's been happily playing in for an hour and somehow be smiley mummy in time for toddler group.

Ds1 is really struggling with end of year transition this year. He always struggles, last year we had two weeks straight of him sobbing literally all day every day at school. This year things have moved up a notch because he knows that, after this, he only has one year left at the school and is distressed and terrified about all the change. I am beyond scared about how he's going to handle the end of next year, but have had to stop myself even thinking about that one for the moment.

He has been a nightmare to live with, on a hair trigger, hypersensitive to any noise or movement his sister and brother make most of the time, yet not really there when you try to communicate with him - lots of zone outs etc. He's also become a lot more rigid in absolutely everything, obviously trying to take some control over his life. His teacher says she has never known him like this and now sees what we have been describing when he has been struggling, but only showing it at home.

He has been getting more and more angry with increasing outbursts and told me tearfully last week that he is scared of his own rage and particularly that he isn't in control of himself when he gets that angry. He's frightened he is going to hit another child in anger. Sad

His outreacher teacher on the other hand says he is telling her everything is fine and she only finds out about problems from myself and his teacher. I have asked him about this and he says that he blocks it all out in her sessions because he likes her and wants to have a nice happy time and not get upset. Sad

He is stimming and tic-ing and we are now seeing a resurgence of the reflux he had when he had a breakdown transitioning from infants to junior. (Throwing up mouthfuls of food at mealtimes, plus sore throat and painful chest due to the acid.) He's also back to daily upset stomachs, endless trips to the toilet and spending ages on there.

We are trying to keep a dialogue going with him and encourage him to talk to us so we can try and help, but I don't know if it's actually making it worse for him. Yet when he bottles it up, it makes him so hard to live with that we all suffer - especially his siblings.

It feels like such a long road this time, moving from this year with teachers he loves, into his final year at the school - so everything will be a 'last time at this school' event and then into secondary transition. I am really scared for his mental health through it all and at the same time having to fight the b'std LEA on appeal to get the support that he's going to need if he's going to stand any chance of surviving it. So, he's going to be halfway through his final year before we have it all sorted and that's if the appeal goes our way. Angry

No need to reply folks, just wanted to get it out so I can get on with my week - which is itself shitty for many and varied reasons. Sad

Right, better go and prise my little prune out of her bath and put on my brave face ....

OP posts:
Nonio · 25/06/2012 11:22

I am sending you the biggest hug i can followed by a cup of tea. I can not imagine what your going though. Xx

Desperatelyseekingsupport · 25/06/2012 11:26

Oh Moose Sad. You are helping ds by doing all you can and trying to get help for him. It's a long,hard battle but I know how you're feeling as my stomach is in knots believing that next week school will say that they don't want ds there. I know it's hard to keep positive but there's always support here - honk honk. Tomorrow is another day......

LateDeveloper · 25/06/2012 11:31

Another one sending you hugs. I wont tell you it will be alright but I hope you an ds and find a way to keep him calmer in these last weeks. We have had far too much stiumlation and change this last few weeks and ds just needs time to potter around the house and garden.

porridgelover · 25/06/2012 11:31

I can offer only (((hugs))). You sound like such a great mum and he is lucky to have you watch over him.
Good luck in your battle with education people.

causeforanamechange · 25/06/2012 11:32

I'm so sorry things are so tough right now. Is your ds on any medication? Do you think he could be at the early stages of puperty?

merlincat · 25/06/2012 11:46

This reply has been deleted

Message withdrawn at poster's request.

moosemama · 25/06/2012 11:48

Thank you for replying. You are all very kind.

Causefor, no he's not on medication and he's a long way from puberty I think. He's tiny and underdeveloped if anything, which makes it less likely. He only started losing baby teeth last year and although he has grown more quickly since going gluten free he hovers between the 2nd and 9th centile depending on how things are going. I think he's on the lower end of that scale at the moment, due to the reflux and diarrhoea.

He's gone into school completely hyper and nervy this morning because yet again there's a 'special day'. Non-school uniform and olympic parade. Last Friday was non-school uniform for something else and this Friday there's something else going on. All this change isn't helping at all, but he doesn't want to stay home, as each day is one less day of this school year. Sad

I never thought he'd get to the point where he is desperate to go to school. It doesn't seem like 5 minutes since he was school refusing throughout transition to juniors - these days he won't even stay off if he's ill.

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MyAngelChuckles · 25/06/2012 12:20

Sorry things are so hard for you atm Moosemama, you sound like a fab Mum going out of her way to make things as easy for your DS as you possibly can, he is ever so lucky to have someone who cares so much for him, this time of year always seems so difficult and I know for me always seems like much of the progress DS made during the year seems to fly out of the window :(

Here's a calming Brew and some virtual hugs as it's all I can offer.

coff33pot · 25/06/2012 13:16

awww Moosmama :( another Brew and a hug to you x

You are helping him because he can trust you and talk to you and he is able to be himself at home.

Maybe discuss with the school to start a sort of early transition to seniors discussion. Maybe talk to the senior school and ask for permission to go to their building when empty a few times so your DS can get the feel of the place and take a camera with him and build his own scrapbook. Perhaps if it is all coinciding with his last year at school he may gradually feel secure in the change rather than leaving it all to the end of his time there.

Perhaps the senior school would be good enough to arrange short meeting appointments throughout the year to meet his pastoral teacher (there was one in DD school that acted as a mentor for all the children) I realise they wont be able to tell him who is new teacher will be but if he met say the maths teacher, english teacher etc even for say 20 mins in their class rooms he will learn that he has to walk to different places for different lessons. Perhaps ask if you could take him to the lunch hall to have lunch and photograph it.

Just little things may help and he may feel more secure knowing where he is going 12 months from now x

alison222 · 25/06/2012 13:17

moose sending you virtual hugs. I have been following your story and am so Sad Angry for your DS at the possible withdrawal of help from the outreach teacher. The system is so wrong.
I am still waiting for the "I'd rather go to school than stay at home".
Your DS is very lucky that you are trying so hard to get the right help for him. Its not your fault that the system makes this so difficult for everyone, and the end of year changes don't help anyone with ASD.

auntevil · 25/06/2012 13:51

moose do you know what secondary school your DS is going to? Because I liked that idea of Coff's - a really long transition, not just a hasty few appointments at the end of the summer term.
I really sympathise re schools. I have been told that DS should manage with a good supportive transition. But realistically I have little faith in everyone doing more than pay lip service to the strategies agreed in the transition.
DS goes into Y5 this September, and I will be doing the rounds of prospective schools and grilling their SENcos - mercilessly.

moosemama · 25/06/2012 16:40

We are fortunate that there is already a very good SEN secondary transition process here. They start about 6 months before they go, form a little group of children with similar dx's and get them together for sort of little coffee mornings. Then they go together to visit the school, as well as doing individual visits.

We don't know what school it will be yet. I was supposed to call a couple to book appointments with the SENCOs this morning, but was in no fit state to have a coherent conversation. We were advised to wait until the GCSEs were coming to an end, as the schools tend to be more helpful once they are out of the way.

He wants (well doesn't want - but ykwim) to go to the local academy, purely because that's where all his 'friends' will be going. To be honest there isn't much to choose between them, other than one that has a unit that's no good for ds as it is ASD, but only with learning difficulties, but has a good rep generally for supporting SEN in the main school - problem with that one is distance, as he'd be just within the cut-off for getting transport and I don't drive.

I'm hoping the local academy will turn out to be ok, as I feel that if he wants to go there, then I have to do my best to find a way to make that happen - provided they are able to meet his needs.

Truth be told though, at this point I can't see him even making it through transition - dh and I both think I will end up homeschooling him after next year. He can't even stand us mentioning secondary school at the moment, let alone in relation to him.

On a more cheerful note, I got to see both my boys doing their performances for part of the Olympics Parade this afternoon. It wasn't a public event, so no parents invited, but dd's toddler group backs onto the playing field and she was playing outside. Grin Ds1's face lit up when he saw us there waving and he did so well standing up in front of the whole school and the local mayor to recite his part of the poem they were performing. Oh - and the reporter from the local paper picked ds1 and the lovely girl who kind of mothers him to have their pictures taken to go in the paper next weekend. He was really proud about that.

OP posts:
moosemama · 25/06/2012 16:42

Sorry, should have said thank you so much for all the support, hugs and Brew. I really do appreciate it. Smile

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madwomanintheattic · 25/06/2012 16:46

oh, bless, i hoped this wasn't you.

anxiety is a bitch. i have nothing else to say... keep on keeping on, you are doing a fabulous job, and are only human x

moosemama · 25/06/2012 16:56

Hi madwoman, fancy seeing you here. I just posted on the other thread, but didn't link as it sounds like you have enough going on.

Thanks for the support. Smile

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EllenJaneisnotmyname · 25/06/2012 17:31

Hi there moose. I'm so sorry he finds these transitions so hard. Next year will be a worry. Sad Do visit the secondary schools because he may surprise you and cope well once he has started. Secondaries can be more ASD friendly in that unstructured time is at a minimum, timetables are rarely interfered with, the week is really consistent; this time, this room, this subject, this teacher. If they have any experience of ASD, all the better. Even if you end up HEing, you need to have a sympathetic secondary ready just in case. My DS2 has surprised me by settling really well, but TBH, he has never had the anxiety your DS1 has.

I have to say that after SATs in Y6 may be a time to avoid for your DS. It can be really, really bitty, maths and literacy abandoned and lots of visits, day trips, production practice, transition visits, sports events etc, etc. It may be as well, except for transition visits, to abandon school at that point to HE for the rest of the term. I know it's a year away, but something to think about.

Sounds like the next few weeks will just have to be bourn. It's such a shame that the time of year that is the best bit for so many DC is actually the worst bit for our DC. Sad

moosemama · 25/06/2012 17:58

Thanks for the advice and support Ellen. Sadly I can predict him refusing to be pulled out of school for the end of the Summer term next year. He will want to squeeze every last drop out of his primary school before he has to leave.

He's okish this evening. I came home and baked the scones that he's been begging me for since last week so that cheered him a little and now he's destressing on his DSi. I can tell he's bottling it all up though by the sheer level of fidgetting and stimming. He's not the most relaxing person to sit next to at the moment, even when engrossed in a video game!

OP posts:
coff33pot · 25/06/2012 18:55

Oh I am glad they have a good transition plan for SEN that is a good thing.

Famous and in the paper too Grin

I like a bit of Jam and clotted cream on my scone please :)

TheLightPassenger · 25/06/2012 18:58

not great words of wisdom, sorry that he (and by extension you and rest of family) are having a tough time atm. I reckon even by summer term standards this one has been v unsettled for many because of all the fuss about jubilee, olympics etc.

Interestingly, a very experienced SALT with DGD with language disorder once said much the same as Ellen, that the structure of high schools can actually help kids with SN, as there is such a clear demarcation line between subjects etc.

moosemama · 25/06/2012 19:52

They're gluten free mind, so a bit flat and you'll have to supply your own clotted cream.

Thanks TLP. Yes I am hoping the strict structure of secondary will be a positive for him. Just need to make sure they have strategies for unstructured time, eg lunch times - preferably computer or chess clubs or failing that access to the library perhaps. Problem is, he will want to be outside with his best friend (if they end up at the same school) but seems to be some sort of magnet for bullies.

I hate that we are already having to think about all this, when he's not even into his final year at juniors yet.

OP posts:
EllenJaneisnotmyname · 25/06/2012 20:08

Ds2 goes to a lunchtime club every day, but it's a SEN one. He's happy to do this and it keeps him safe and happy, but he's less self aware than your DS, who may find such a club 'uncool.'

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