Angry

[KarenThirl]

Still haven't heard from the psych who's assessing ds, and I'm now furious. Left my third message on Friday, this time more specific and saying why I need feedback, how bad things are getting with ds, need to know that the psych has observed sufficient behavioural problems to proceed with the assessment. Even said I'd change my usual arrangements and be home ALL DAY on Monday so please could someone - ANYONE with access to J's files - contact me then? And guess what, not a sausage.

Have spoken to my HV and she's contacted the dept, spoke to the psych who (unsuccessfully) assessed J last year. He said "If she's that worried, tell her to give him the fish oils" - this from a man who hadn't even heard of the benefits of them this time last year. Secretary seems most helpful person in the dept, and has promised to keep bleeping our psych until she answers and contacts me.

It's now four weeks since J was seen in school and five since the home visit. All we're waiting for is the next bl**dy appointment, so why the hold up?

[MrsFROSTgetful]

i feel for u- i get fed up of things like this too....we are real people with real children ....not Just a statistic.

hope you get through to them ....feels like you are banging your head against a brick wall.

[KarenThirl]

Got a call back from the secretary, with an update appointment next Monday. She didn't know whether J was included in that though, so it will be just me and dh. I have an awful feeling that the reason for the delay will turn out to be that she doesn't think any further investigation is necessary - J was far better behaved on both visits than I've ever seen him (oh, the irony) and I'm rather apprehensive for Monday now. Might try to speak to the SENCO before then, see what her impressions were as she saw J on a doozie day. Could help to have her comments to hand.

[MrsFROSTgetful]

do you feel taking him (and though AWFUL for him....not warn him so he is i would guess unsettled at an un-planned change to his routine)....then even if the plan is to 'let u down gently'...that maybe J will react badly enough to show his needs ....isn't it awful that we have to be cruel to be kind to our kids...bit like my ds1 TOM who is 11 ADHD and AS...takes stimulant meds to calm his ADHD...there are times when i would |LOVE to send him to school unmedicated...to prove his needs...yet i cannot do this to him.

let me know what happens.

[MrsFROSTgetful]

meant to add that i take all 3 of my boys to TOMS paed checkups...has them every 6 months....due to his meds ....my reason for this is i am determined that ALL 3 OF MY BOYS will get the diagnosis they 'deserve'...and 2 are now dx'd with AS...and ALEX is 6 in may...and he is so disruptive at this clinic that this last appointment she saw us in the main (empty!) waiting area...as in her words 'Alex isn't happy in confined areas'...more to the point that every time we are in a proper 'doctors room' something gets broken!

[KarenThirl]

Thanks Mrs F. Not sure if it would help to take him. He's not particularly fazed by changes to routine, rather that he performs better under structure, so he wouldn't go off the wall or anything like that. Usually he wanders off to the toys and ignores anyone's attempts to engage him, which I'm sure would be viewed (under the circs) as 'a good little boy just playing nicely'.

Will ring SENCO today, also arrange a meeting with J's teacher by end of week to check their main concerns etc. I could be wrong about all this but have a very negative feeling (I'm sure those of you who are experienced in these things will empathise!). Any suggestions for Monday's meeting would be greatly appreciated.

[MrsFROSTgetful]

it's so annoying when certain behaviour is seen a 'Good' just because the child is quiet and not disruptive.

This is the key issue for me with my elder 2 sons- though they do talk alot- they are otherwise 'well behaved and not disruptive'

I feel i need to 'interpret their behaviour' to people to demonstrate 'waht is REALLY going on '

[KarenThirl]

Spoke to J's SENCO this morning, and what a lovely woman! Good news too - apparently they were going to speak to me at Parent's Evening at end of March to discuss putting J on the special needs register, but in view of my concerns she'll bring it forward and put him on today. First IEP will be drawn up at Parents' Evening and they'll explain further then. This is great news, just the ammunition I need in case of negative feedback at psych's appointment on Monday. In fact, SENCO said that if we hadn't done so ourselves already, she'd be suggesting at this stage that we contact Child and Family and request an assessment! Ready for the battle now, but hope I'm just being negative and there won't be one.

[MrsFROSTgetful]

i'm really pleased about that- half the battle is 'just'getting someone to listen to you (preferably one with your opinion helps!!!!)

[mamadadawahwah]

My two cents, create a paper trail for everything. If you dont hear from a clinician, write immediately with your concerns and state you want an answer within x days. Carbon copy it to the head of the department.

[coppertop]

I'm so glad that people are finally starting to listen to you. It can really make a difference.

For ds1's assessment I didn't prepare him for anything. He had a mini-meltdown in the waiting-room (thankfully observed by the OT) and I was able to re-trace our steps to the entrance, show him what was happening and then show him what was happening next. The OT couldn't believe the transformation. Suddenly ds1 was all smiles and giggles.

Ds2 wasn't too bothered about going into the room. I just kept commenting now and then on what I thought was happening, eg "Now that no-one's directing him has just switched off altogether and is ignoring us both" and "This is what he does when he's getting overwhelmed and about to shut down." 20 seconds later he did just that.