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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Feeling beaten up

36 replies

Jimjams · 16/10/2003 17:41

Oh god what an afternoon.

It's been ages since I've out ds2 into creche at the gym (which he loves) so I decided to book him in for a session and take ds1 swimming this afternoon. (thought I'd take advantage of the fact he does half days at school). Anyway becuase it was cold and the boys needed to wear coats this meant for logistical reasons that ds1 had to get out the car and wait for ds2. He isn't used to waiting at the gym as usually we go with dh as well. Anyway he completely lost it, totally. He kept running away (straight out into the road). I had to drag him back to the car to get ds2 then charge after him when he slipped out of my grasp again. The he ran away whilst trying to book ds2 into creche. SO i dumped ds2 and ran, by now he'd squeezed through the bariers into the gym, I couldn't find my card so had to scream at the girl t let me through. got him into the ladies- where he almost lost it again because hairdryers were on. He was screaming and screaming by now, and hitting himself- which someone helpfully pointed out ("he's hitting himself you know"- no really?) by now he'd given himself a cut lip. And was trying to run into the pool fully dressed. Got into the pool-wouldn't wear his bouyancy aid, but didn't want to hold onto me either- so kept sinking (he can't remotely swim) still screaming. Eventually dragged him out of the pool and cuddled him while he calmed down. Then we did get a swim (no jacket though).

All because his routine had changed slightly. He has got som bad with routines in the last couple of weeks. I was hardly being that spontaneous. Lots of people were staring, but no-one seemed to think to grab him and stop him running into the road.

Right sod it I'm applying for a blue badge so I need higher rate mobility. One dla form coming up. Does anyone know that point of law that says autism is an exception to the IQ of 75 rule? - I think I'll have to refer to it.

Actually I'm not feeling beaten up I was beaten up- was smacked around the face several times.

When we picked up ds2 they said he was gorgeous and they'd happily keep him all day. I suggested they had ds1 all day but they didn't look very keen.

My mum has them now.

OP posts:

ThomCat · 16/10/2003 17:45

Oh JimJams - you poor thing. That really does sound like a massively rotten day. Hope you get to enjoy a quiet evening and a bottle of wine.
TC xx

fio2 · 16/10/2003 17:50

Oh dear jimjams, I would open that wine if I was you Do apply for the mobility component. I keep meaning to apply for a blue badge but the forms looked a bit complicated and then I lost them - will have to ring social services again for a form.

ThomCat · 16/10/2003 17:55

I applied for a bluebadge and was rightly rejectd as at the time I was advised to appy DD was only a v young baby. However going to re-apply as carrying a 2 year old around ALL the time is starting to take it's toll on my back and looks as if I could have possibly another year of it so will try again now she's older.
Personally I think you should get the blue badge -without question but good luck.

fio2 · 16/10/2003 17:57

I do too Thomcat

tamum · 16/10/2003 17:58

Nothing remotely useful to say except poor poor you, jimjams, and poor ds1 to be so upset. Do you think starting school has destabilised things for him a bit, even if he does like it?
Hugs to you both.

Original poster

Jimjams · 16/10/2003 18:03

Ugh dla form I was going to apply when he was 5 for mobility anyway, but I do think he should get higher rate so I may as well apply now.

I suspect he was particularly bad today as he had his first bit of gluten for years yesterday (came downstairs from getting ds2 and found him munching a doughnut! (dye dye dain- bye bye cake as he said). I shoved him full of enzymes but still. He was also awake for hours last night and apparently almost fell asleep during his computer class.

Anyway Japanese tonight so I get to switch off and be a real person for a couple of hours.

OP posts:

Davros · 16/10/2003 18:32

Urgh! Jimjams sounds awful. I can totally relate though, its amazing how people gawp while you're trying to save your child's life.

Interesting about the routines emerging, maybe related to Tamum's good point about the change of going to school possibly destabilising him a little. Not saying I have the magic answer but being aware and noticing these things usually means you are half way there. I also find that things like routines or stims that I just can't seem to have any affect on just change or go away in time (sometimes a long time!).
As for getting higher rate DLA, if you're not due to re-apply they may only accept it if you can claim a change of circumsances. Do you remember I posted about it a while ago? I think you'd easily come up with something, e.g. including the dyspraxia or being hyperactive (I used that one without a real dx of hyperactivity but I had discussed it and it was mentioned in some exchanges with paed). I'll have to see if I can find that clause or precedent about DLA for ASD/learning disability, I know it exists.
You don't sound too bad considering! Have fun at Japanese, I'm very impressed, I haven't formally learnt anything since a took my driving test when I was 28!

lou33 · 16/10/2003 19:14

Sounds like a rotten day Jimjams, sorry to hear it. Were you deliberately waiting until ds was 5 to claim, because I thought mobility was from age 3? Hope you get the higher rate and the badge, good luck.

Jollymum · 16/10/2003 19:32

Jimjams-go for the blue badge and anything else you can get. Just being curious-why Japanese....hope things get better. I read your posts all the time and I know you have it rough sometimes. I always think when you say about auti kids and non autis that I wish we lived nearer-your kids can come into my house anytime! Hope things calm down and you have some sleep.

fio2 · 16/10/2003 19:55

we were able to claim mobility too and my dd was just 3 when we applied and as you know she has no diagnosis - so is this age 5 just for autism-seems silly to me, but so does all the form filling in

Loobie · 16/10/2003 20:37

i think the mobility part of dla can only be claimed from age 3(I THINK?)

ScummyMummy · 16/10/2003 20:56

Sympathies re your bad day, jimjams. It sounds really scary and frustrating. I can't believe that someone was divvy enough to inform you that ds was hitting himself- what a wally she must be! Glad you got a swim in the end though and I'm bowled over by you hanging in there and calming him down and not giving in to the temptation to give up and go home- you're a real star.

BTW- I think the NAS factsheet on dla is very good on how to argue for higher rate dla for autism. Have a look here from page 2 onwards. HTH.

aloha · 16/10/2003 21:04

What can I say? What an awful day. You must be shattered. You thoroughly deserve a drink and then a nice lie down in a darkened room Poor you. At least ds2 had a good day...

Original poster

Jimjams · 16/10/2003 22:02

I get higher rate DLA at the moment- just no mobility (because they changed the rules so you can claim higher mobility from under 5 but not lower- I'm guessing he was assessed as being lower). I do know other children who are kind of similar to him who recieve higher but I think they all had to appeal. I'll ring them tomorrow and find out more.

What nice messages to come back to. Not sure I looked a very nice mummy scummy I hate it when he loses it becuase to keep him safe I literally have to pin him down- then I wait for the knock on the door from ss. `I was very impressed though because when I was calming him down oin the changing rooms he was sat on my lap sobbing, then suddenly said "da da mmdan" - I want toilet. So I took him- and he went! We are almost there with toilet training.

Anyway nice safe day for him tomorrow- it's nursery.

Oh and why Japanese? I lived there in a previous life (10 years ago). Have studied it on and off since then, and when the opportunity came up thought I'd have a go. it's a 2 minute walk from the house, friendly class, and a great way to forget cack. I do seem to have left my brain in the delivery suite though.

OP posts:

monkey · 16/10/2003 22:08

jimjams, nothing else to add here either but big hugs. hope you've recovered.

ScummyMummy · 16/10/2003 22:53

Glad things got better as the day went on. Am dead impressed at his bladder control as well- that's such progress, isn't it?

Sorry- meant higher rate mobility is discussed in the link from page 2 onwards- worth a look for how they decide and how you can argue your case- all the stuff about IQs etc. I think they're pretty tough with awarding higher rate mobility because of the "passport" entitlement to the motobility scheme and a blue badge- but the case law is definitely on your side. Worth a go and the success rate is getting quite high on appeal, I think, so they may even start making the right decision in the first instance more often soon and then you won't need to appeal!

Original poster

Jimjams · 17/10/2003 07:41

brilliant scummy- you're a star- that's what I need the IQ bit. I'll quote that case at them in the first instance and hope I cut out the need for an appeal.

Many thanks.

OP posts:

doormat · 17/10/2003 08:26

so sorry to hear about your bad day jimjams
I think tamum may have a point about the nursery though.
Hope you had a relaxing night last night

Original poster

Jimjams · 17/10/2003 09:56

Bloody hell quick rant before I go out.

Rang the DLA "helpline" (I use the term loosely). Explained that my son received higher rate care and now has become so unsafe on roads that we need higher rate mobility so we can get a blue badge. The idiot said "to qualify for higher rate mobility a child has to be virtually unable to walk". I told him not according to the courts and that this had been to appeal and children with severe autism qualified. His reply "well I'm not going to argue with you so I'll send you the claim form so you can be turned down". Pratt!! Do these people not realise that a) I talk to other mothers so I know who recieves higher rate mobility and who doesn't, and b) we have enough shit to deal with every day without some idiot being totally unhelpful on the end of the phone.

Aaaggghhhhhhhh

OP posts:

lou33 · 17/10/2003 10:00

What an idiot he sounds. You should have said very patiently to him "ooh it sounds like you need a nap dear to destress". Did you get his name, so you can whoop with delight at him when you get mobility?

ThomCat · 17/10/2003 10:16

What an a-hole. Stupid, stupid man!

Davros · 17/10/2003 10:41

I've heard of people being told this a few times. Its INCORRECT! Stupid plonker, and annoying/upsetting too.

Blu · 17/10/2003 11:03

Phew! I felt like I might have to take something calming having simply READ all that...you HAVE been beaten up, emotionally, psychologically and socially...and if I ruled the world you could sue that git on the phone for assault!Well done on getting through the experience, managing to calm your DS to the point where you could all have a swim. WEll done, well done.

Batters · 17/10/2003 11:14

This reply has been deleted

Message withdrawn at poster's request.

mrsforgetful · 17/10/2003 11:55

JimJams: I'd just like all those 'onlookers' and 'childcare experts' to live a whole 24 hours in your shoes ....and then see if make hurtful comments again.

When i claimed DLA i used a site recommended by WICKEDWATERWITCH- which was BRILLIANT- see if it helps. Here's the link :

www.bhas.org.uk/dla_guide.htm

It's not just for autism- so gives examples of wording for things like Hyperactivity,reassurance and Road safety awareness

Thinking of you!

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