Paediatrician with ds3 tomorrow- feeling sorry for myself rant, I do apologise

[Peachy]

Am dreading it.

First time without DH (has to work tonight) and we're supposed to be getting a DX, although the reports till haven't been done so I asume we won't get one this time.

Constantly angry about how ds3 has been treated. Still seen nobody bar one Paed appointment (and a statementing Ed Psych assessment but we have yet to see it). And then the LEA lady told us ASD is the fault of parents who allow too much TV . I know thats shite but really hurt . Every time it seems like LEA people are trying to blame DH and I. We're having to pull DS3 out ofs chool entirely which we wouldr ather not do, but they haev failed him, and with DS2's needs I feel I am slowly going insane. SS won't help (havent even bothered registering DS3, no point after lack of help with ds1- every time we speak to them they claim theyve no record even though we have a formal assessment in type). My Uni work is not as good as it was because I am constantly exhausted, ds3 doesn't sleep much apst 3am and ds1 doesnt sleep much before 12pm. DS2 is off the rails a bit atm because he's copying ds1, and tbh there are moments I feel like just screaming. I can do the boys, (although ds1 a real struggle at times) but there's completely nothing for them- one salt session this month for ds3 but then thats it. Only thing ds3 will ahve is a children in need palce at BIBIC. Why si acharity yet again having to fund us? And it'd be ahrder if I weren;t at Uni, coz that money helps a lot.

Top it off the bitch next door hasd been bickering with our landlord for ages as she wants aprt of the garden, and when we were away she just built into the garden, left glass, has disposed of fence and left builders stuff out so we are gardenless and she is nto commentning on whether she can be arsed to sort before summer holidays. So housebound 60 miles from home with no garden.

Fan bloody tastic



Will now endeavour to eprk myself up, actually like the Ped but dreading the visit as LEA have completely contradicted us with shite we know is clearly untrue.

[mummytosteven]

Sympathy, as these sort of appointments tend to be grim at the best of times (i.e. when there is some sort of adequate help in place). I do hope that this appointment does SOMETHING to help along the route of getting DS3 proper support.

[Peachy]

He's been offerd a 1 - 1 probably but not until he's been in school a month which is why we're pulling him,. The fake-ed-psych says we HAVE to potty trian him by summer,a nd HAVE to get rid of his obsession. Apaprently she knows people who know it can be done but they;'re away - this si the same one who knows ASD is caused by TV.

We've compained about her before though and nothing much happened. She retires in six weeks so its not worth the effort. Just, ds3 loses again.

[mummytosteven]

yeees I can see why you aren't keen on the have him start school for a month without support idea - it whiffs really, doesn't it of the support never materialising... good job that little miss miracle worker will be out of your hair soon, how on EARTH does she propose you get him trained if he's not able to? or does potty training correlate to telly watching as well in her world view.

[Peachy]

Ah she cant help with the how, thats not her job

but she KNOWS he can do it

I mean, she ahs met him 3 times, of course she knows him better than us

She even had a go at our CM for backing up our accounts of ds3, fortunately cm has an ASD child herself so has been through it all before.

Normally i feel that DH backing me up is helpful which is why i ahte the idea of him not being there. And if I did get a DX- to then have to come home on the bus (no parking at hospital) I just cant imagine.

I have report after report detailing DS3's lack of social interaction but for some bizarre reason fake-ed-psych says it may well be 'just' (?!?) global developmental delay. Which it cl;early isn't.

[tibni]

All the best for the meeting; they are incredibly difficult and painful.

Aplologies as i'm new and don't know your background. EP sounds unbelievable - I would be furious too if anyone had suggested my sons ASD had been caused by parenting.
DS3 is at school - what year? Have school put any help in place? DX not needed for support.

By "pulling him from school" do you mean permanent Home Ed or just until support is in place? Would it be an idea to maybe put your concerns about your son in writing to school head / chair of govs and LEA (maybe head of inclusion or director of education)
Without 1-1 support my son would be in danger (total runner!) not sure if its the same for you. School has a Duty of Care to your son and by highlighting his needs you are making everyone accountable.

As I say I don't know your situation / the history/ relationship with the school - all which will influence the way you move forward so feel free to ignore my thoughts!

Hope your meeting at least provides some answers.

[mummytosteven]

Would there be any point in pulling a sickie, and trying for an appointment once fake Ed Psych has left? Or would that just delay things by several months?

[Peachy]

the prolem with tomorrow is if we dont attend, then the medical for the LEA doesnt get done and they get out of the statement as we will be non-attenders

Brief synopsis for tibni: we have 3 boys, ds1 has HFA and can be extremely aggressive. It took us 5 years to get his condition recognised 9although give her a due- Paesd recognised immediately). he gets support now at school, but its been afight all the way- at one point school even told us that they ahd applied for a statement and ahd it refused which was completely amde up . there was also an incident of the Head (who is advised by fake-ed-psych) tellingt he local SNAL support peole inour hearing (as she knew) that ds1 had no issues bar abd aprents. Now they admit its HFA but the damage ahs been done, and the Head is banned from all meetings we attend.

DS3 seemed OK until a year or so ago, language a but delayed - we ahd expressed concerns but HV dismissed them. Then he had a massive regression, lost all lanaguge and a few months later lost all toilet trainng etc (had been dry). HAs beena ssessed as being 18 months - 2 years delayed in all areas now.

Ed PSych isn't an ed psych really- she's a teacher with noa dditional training employed by LEA to, as far as we can see, dismiss peoples concerns to get them out of helping us. he advice consists of stuf flike 'he'd talk if he didnt have a dummy' (he doesnt ahve a dummy) and 'yu should have breastfed him' (until 16 mionths, in fact).

We actualy took him tro paed thinking he had a language disoreder- paed made it very clear she wanted to dx asfd but cant without salt. unfortunately the salt here for sn work left and was never replaced, he has an appointment with the service amnager due shortky, even that took about 15 emergency referrals

DS3's delays are such that I ahev tried to teach him age twenty times a day for six months and he still doesn't respond to the question. he was ill alst week and didnt even try to make us aware, despite being covered with sick one night and having a raging temperatue.

[mummytosteven]

yes, I suspected there would be a good reason why you had to attend iyswim. your boy sounds similar to mine Peachy, except I've not had regression to deal with, and mine's a touch younger. I am still really really baffled that they are insisting on SALT to diagnose, but hope that now you finally have that appointment it's productive.

quick question - would a clinical psychologist be any use re:diagnosis, as surestart centre can arrange one to observe S in the near future, no other NHS appointments till Jan at earliest apart from hearing test

[Peachy]

IN many areas a clinical Psych is the one who diagnoses so definitely worth it yes- get all reports in triplicate as I find sending them out to everyone is great for both reference and just remaining in their thoughts! There's no surestart here unfortuantely, which is a shame as my alst job was funded by them and they were really useful for many things.

The SALt thing is procedural- theres no CDC here, just a Paed and so she ahs to discount language disorders. She can over ride that but she did that for ds1 to help us get him help, I cant see her being able to repeat that for us. She did however make it very clear that it will be ASD< Dh kept saying he didnt think it was and she would very gently reiterate that it was ASD, and that was what we should expect.

[mummytosteven]

Thanks for the answers and explanation peachy.

[Peachy]

Well dont know whether to laugyh or cry- Paed has gone sick! Got the call this morning. They will get in touch when eshe returns but cant predict a date at this stage. School SENCO is telephoning (SENCO covers nursery too) LEA to see whether Paed has supplied the report yet for statementing or was waiting until today (was supposed to be medical for LEA as well). If not, LEA could refuse to proceed with statement as SALT also haven't been able to assess within deadline, the only qualified professional was a (proper) ed psych and she only saw him once, and hasnt been ahble to talk to us or attend any meetings.

[jenk1]

oh peachy i am sorry, you are going through it at the moment

[Peachy]

Hi jenk

Its just the stress of the expecting the whole dx and then getting the call to cancel! generally i'm OK atm.

Supposed to call ed psych to discuss alter, unfortunately she never left her number on the message



arrrrgggggggggghhhhhhhhhhhhhhhhhhh


pmsl

[mummytosteven]

Oh no, sorry to hear you've been p*ssed around, hope that the paed comes back to work soon, and statement gets sorted out.

[tibni]

Gosh Peachy, you really have had a rough time!

The statement thing is a real pain! Only permited exception for LEA not following set criteria timescale is waiting for reports!
However I would challenge anything more than a delay, (although obviously this isn't good)

Could be worth chasing Paed secretary to see what stage report is at! They tend to be a fount of information.

[Peachy]

SENCO ais supposed to have called secretary and LEA today so will chat to her tomorrow- she's ds1's calss teacher atm and helpful

Course she does try to hide when she sees me coming LOL, but don't blame her!

Saw a t shirt today i want for schhol runs-

i can only please one person a day
today is not your day
{and tomorrow isn't looking too good either}


Sums up how they see me I think LOL

[tibni]

Like your style peachy LOL

It used to bother me being public enemy no 1 at school but now im used to it LOL. It was a standard joke on the playground that my home and mobile number would be on schools "friends and family" and that my numbers were 1 and 2 on their speed dial.

Right now Im also on SaLT and Senior Assessors hit list! - my crime? pointing out that they have seriously breached my sons statement and expecting them to sort it!

Both my kids (DD NT and DS ASD) are at the same mainstream school - maybe I should order a tee shirt like that too!

[Peachy]

Now school have never contacted me- even after I watched ds1 assault a dinner lady! It would too much like admitting a problem.

I actually got threatened by the fake-ed-psych! We complained about her initial assessment / attitude 9and I got the letter proof read on here), her manager arranged a meetinga nd as soon as she was alone with dh and I she stood up and had a right ansty go at us!

Thing is though, I used to be very meek and milkd, I still am when it comes to most things, but I have learned I HAVE to be demanding for the boys and if i'm not thennothing happens. I have a default disapproving-1940's-headmistress mode which comes in most handy LOL

[Peachy]

Apart from fake-ed-psych I should emphasise the others are all kindly enough (bar the Head but shes a lost cause), but suffer violently from under staffinga nd a lack of staff even in the posts that do exist to be filled