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SN children

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Original poster

Big slap in the face of reality

34 replies

ilikemysleep · 12/06/2013 16:02

Took my DS (aspie, SM) to visit his secondary school today. They had arranged a special 1 on 1 visit with SENCO as a 'preview' to the generic year 7 visit in a couple of weeks. They have also arranged for him to be in a tutor group with the 2 friends from his class going to the same school, and have chosen a tutor (who he will have y7 to y11) they think will be a good match - not shouty, calm and clear etc. Senco showed him the year 7 planner, the dining room, how to buy stuff, etc etc. He was even greeted by name by the headteacher, which impressed me :) (I am sure DS didn't know he was the headteacher!)

DS clung to me as soon as we got out of the car. He clung to my arm with both his arms, he even tried to put my arm round his shoulders. This is a kid who normally avoids touch. He did not speak or smile or look at anyone at any point. There was no verbal communication and he only managed to shake his head twice. He was totally mute, totally avoidant, until we got back in the car when he literally exhaled and started moaning about being hungry.

I know he will settle in and it will be okay but it reminded me yet again of how disabled he really is in terms of his communication. I feel quite sad about it today.

OP posts:

PolterGoose · 12/06/2013 17:00

This reply has been deleted

Message withdrawn at poster's request.

Handywoman · 12/06/2013 17:28

(((Hugs))) from to too. And a top up of

Handywoman · 12/06/2013 17:29

...from me too, even. Less for me, praps.

Original poster

ilikemysleep · 12/06/2013 18:44

Thanks, polter and handywoman. And to cap it all off, just had a text to say they are awarding ds DLA (but not at what rate!). Have never felt the need to apply before but as ds gets older and his mates do stuff independently, ds....can't, and it's not 'mild', he has SEVERE communication difficulties. He is lovely and I adore him, aspergers and all, but I would take this mutism away tomorrow. It's very different from the autism, that is who he is, whereas the mutism is definitely something he has. Poor boy, what will become of him?

OP posts:

Original poster

ilikemysleep · 12/06/2013 18:47

I mean, the award of DLA is more evidence that ds has a rough road ahead, a big hill to climb, etc....
I am grateful to be awarded on first try. And I didn't do worst day or anything, just ordinary day, and someone in the government thinks ds's ordinary day is far enough away from the norm that we need dla. At least it will pay for the epsom salts, lol...

OP posts:

StarlightMcKenzie · 12/06/2013 19:57

. I think that is one of the hard things about developmental delays. There is always a new development to realise that your child is behind in.

Hopefully he'll process it all over the summer and it will be a positive start. The school sounds pretty good.

MumuDeLulu · 12/06/2013 21:40

Well done for getting through it. Sounds like the best possible school too. And although it was too much for him today, its brilliant that he went, you know already that he'll process the day in his own time.

Horrible to watch a dc decompensating though. We forget how much scaffolding our dc have, it's so routine it becomes invisible when they're doing well. Use some of the dla for some Epsom salts for yourself

Original poster

ilikemysleep · 12/06/2013 22:11

Thanks, Starlight and Mumu. I am hopeful about the school. It's a local grammar, I worry about the academic pressure but the local comp is 2000 kids and the grammar only 4 form entry, so as the key thing for DS is that people know him and understand him - smaller is definitely better.

I think you are very right and very sensible to say it will take time for him to process. He seems much less traumatised this evening than his behaviour at the time would suggest. He loves the idea I have given him of pretending to be psychic and 'predicting' the number of their form room and name of their tutor to the other 2 lads...

OP posts:

zzzzz · 13/06/2013 00:23

This reply has been deleted

Message withdrawn at poster's request.

Original poster

ilikemysleep · 13/06/2013 19:35

Thanks zzzz for your kind post.

This is my last post here I think. I can't stay here being viewed as 'the enemy' each time I post and I find I am really hurt at people's assumptions of my work and of our profession, being told to be the change I want to see when I believe I am doing exactly that, where I can, but I cannot do anything about the budget set for the LA by the government...and no-one knows what I do or don't do at work. As I keep saying, I am here because my boy has real needs. I can't go to our local parent support groups because there is professional conflict (as in, I am involved with their kids and it's not appropriate, not that I am in conflict with them) in so many cases. Turns out I can't come here either without judgement. I'm not a parent or a professional. I am both, and it is pretty lonely.

OP posts:

dev9aug · 13/06/2013 19:56

Ilikemysleep I am sorry to hear that you are leaving. FWIW you come across as genuinely committed to making difference and a person with integrity. I am glad that you are here because it helps people like me to see the other side and not treat everyone from the LA as enemy.

People only post on the internet when they have had a bad experience so there is a bit of that going on, but off course it hurts nonetheless when it is your profession and yourself by proxy being trashed. I hope you feel strong enough to come back because then nobody is there to correct the perception that all LA EP's are corrupt and that is not right either.

MumuDeLulu · 13/06/2013 19:57

Please stay. I know it must often feel like being a German taking a UK holiday circa 1946, but you're clearly one of the good guys. Like many others.

Have pm'd you with some more detailed thoughts.

KOKOagainandagain · 13/06/2013 20:29

I hope that you stay. I know that not all LA EPs are 'bad' but a lot of us on here have had very bruising encounters with profs over the years. You remind me of that. Also I think that it is important for profs to really listen to parents.

You are a mum with a SN child and you belong here as much as any of us.

DS1 is mute when anxious and the image of his looking at me - not avoiding eye contact - in a beseeching 'rescue me' manner - is burned into my mind.

Be kind to yourself - today has been hard for you too. You can be pissed of with us if you want

KOKOagainandagain · 13/06/2013 20:31

Just to be clear - you remind me that LA EPs can be GOOD

You DO NOT remind me of bruising encounters

StarlightMcKenzie · 13/06/2013 20:39

Ilike, whatever you feel you are respected here not least for you resilience when people let off steam.

But people here NEED to let off stream. There are some REALLY crap professionals for reasons within or out of their control. You may not be one of them. I'm sure you know many who are great and really trying to improve things, but it won't be good enough for us because it is too slow and our children don't have the luxury of time.

We consider a mass resign of EPs etc. in protest as a reasonable course of action because the status quo is ruining our small vulnerable child's childhood and life chances. As a grown adult who can take care of herself you will never get sympathy for your working conditions by parents because of this.

This is not your fault of course and I am sorry if you still feel the need to leave. However I doubt posters coukd change their posts as this is their safe haven to use strong terms against the people who have let them down.

I hope you find a way for it to be okay to stay.

zzzzz · 13/06/2013 20:53

This reply has been deleted

Message withdrawn at poster's request.

signandsmile · 13/06/2013 20:59

just wanted to say I can relate to those conflicted professional and parent feelings (I am a social worker and I struggle with the feelings so many have about social workers, however I also recognise there are some damn awful social workers, I worked with some, and had others work with my dh and/or ds.)

I really believe in social work as a potential force for good, (and I have lots of evidence for that) but that doesnt mean I feel I need to challenge the rubbish experiences of others, (I am not saying you do this,)

we have had good professionals in our lives, and bad ones (weeded those out ) I train social workers now, and I truly believe my experiences as a parent and partner carer have really improved my practice and the teaching I pass on.

standing on both sides of the fence, as it were, can be really useful, to parents and to professionals

signandsmile · 13/06/2013 21:02

meant to say at the end don't go

Original poster

ilikemysleep · 13/06/2013 21:04

Less than an hour and here I am again...

First, ladies, I 'resigned' on my own thread because I don't want to be flouncy about it. I just don't have the fight to be resilient at present. And I think it's rude to just bugger off.

Starlight - I know people need to sound off. The fact that my presence here may make that harder for people is one of the reasons why I have been struggling with being here. It isn't all about 'poor me', I am acutely aware that I cannot and must not, by my presence, compromise people's need to off load. It's not about me wanting sympathy for my working conditions, I just want people not to assume I am a monster who is here spying for an LA. Actually all I wanted was somewhere I could talk about my son and be understood and get information and maybe share some info (because whether you guys know it or not, I am actually SHIT HOT at autism :) , top of my field!). It seems like 'coming out' as an ep has rendered that impossible without frequent motive questioning.

I'm not stropping off because of one thread. I just think it's asking too much of you guys and of me for me to stay.

Hope all your kids grow up safe and well :) and wishing you all genuinely the very best.
Now I really am off :)

OP posts:

StarlightMcKenzie · 13/06/2013 21:24

Ilike, I don't think you being here does make it harder to sound off tbh. There are other professionals whose profession gets a good slating at times too, but given this thread OP you might have enough on your plate to be able to cope with reading about parents anger.

There is no reason to assume you aren't anything but fantastic at your job. I haven't seen anything that woukd suggest it.

Ds' EP reported us to social services without our knowledge for a non-working boiler as funding our ABA programme because of the zero effect alternative offering of the LA, meant finances were to stretched to fix it.

Would you have done that? Woukd you have HAD to have done that? You can see why I dislike the woman right? But perhaps your profession woukd consider that reasonable. Perhaps it even WAS reasonable, though not from where I was sitting.

If you are 100% hard working and committed to you job and the children, but the children are still being failed, no parent is going to care how good you are or how many other children you have on your caseload. They will want to know what you are going to do to stop their children from being failed.

PolterGoose · 13/06/2013 21:44

This reply has been deleted

Message withdrawn at poster's request.

dev9aug · 13/06/2013 22:30

Star I know your last two paragraphs were not direct questions to the OP but perhaps this is not the right time. If I remember correctly, she has only recently answered similar questions on another thread.

StarlightMcKenzie · 13/06/2013 22:43

Dev, I'm making a right ole pigs ear of this I know.

The OP has to make a judgement about what is right and safe for her to do. I've become very fond of her and it has helped me hugely deal with some of my horrible experiences of the past to have heard what she has had to say and has restored some faith.

Perhaps I should have just come out and said that instead.

StarlightMcKenzie · 13/06/2013 22:47

I wanted to PM her but haven't because I knew I was struggling and didn't want to intrude or upset her without the MNSN 'regulators' which is why I have said stuff on here iyswim.

Ta!

dev9aug · 13/06/2013 22:47

Thats better...

See Ilike, we like you really.

P.S. I am not a lady.

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