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update re DK

(18 Posts)
snowgirl29 Mon 11-Jan-16 14:31:28

Hi everyone, first of all so sorry I took so long to update. I couldn't log back in after that mumsnet hack that happened last year but I've finally got round to sorting it!

We went to see her in the summer as planned but unfortunately we are still battling with the powers that be. DK was lovely, took her time with DS and with me, and he was (conveniently) a PITA from the get go. DK kept saying that she was surprised that a child so obviously immature didn't have any other professionals involved in his care. I told her this was part of the problem, he doesn't have any extra support as everyone has stuck their heels in and believes he doesn't need it. She said that he's one of the hardest cases she's seen as he did fit under the autism umbrella but she didn't know where to place him under said umbrella,and unfortunately she didn't have enough professional evidence to back up a diagnosis of ASD. She has made recommendations in her report that he is to have a different speech therapist who is experienced in complex language disorders (senco has already asked his usual ST to do this test hmm ) and that he has the ADOS test done. Basically they're all amongst themselves about who should be the one to refer for the ADOS test , and his nhs paed who hasn't been in touch with me since last may is meant to be the person responsible for doing it. Said NHS Paed doesn't believe there's anything untoward so they're not going to refer are they?

Sorry for this scatty post, its school run time soon and I will try and explain/elaborate more this evening.

2boysnamedR Mon 11-Jan-16 16:50:36

Sorry to hear that. My son was in the gray area too!

He was discharged from his NHS pead today. I gave her DKs report. For the first time ever she hinted that he's more on the spectrum than most. But a ASD diagnosis is for life and she sees no benefit in Dx ing him confused but I agree, I'm done in with him. He was as mad as a hatter today.

I said I might need to see her when he hits his teens and she agreed!

Not sure where abouts you are or if you have any cash left over but there are some good private SLTs about. Unfortunately your looking at DK prices again

ShadyMyLady Mon 11-Jan-16 17:05:15

Thanks for the update snowgirl, sorry to hear you didn't get a diagnosis, but at least you know that there is something.

It's so frustrating isn't it, I just hope now you have this report from DK they will start taking it more seriously and pull their fingers out. Keep pushing for the referral for the ADOS, ring every day if you have to.

I'm a bit quiet on the fighting front at the moment, I need to make so many calls but I just don't have the energy to do so. We are still struggling to get any help for DD, CAMHS are the only ones who have been any use so far. School are shocking and she we don't have any other help still. I would love for her to see an OT, but the last OT she saw was awful and then discharged her after seeing her once.

snowgirl29 Mon 11-Jan-16 21:20:39

I'm being careful what I say here as I don't want to 'out' myself but I know its the school that have put the spanner in the works. DK said in her report that the adhd form they filled out, ds only scored 1\40 , she told us in the assessment that she expects a much higher score than that for an NT child so I know these forms were completed with some thought hmm

ShadyLady I understand, I've been glad everytime I can't get through to ds's nhs paed (just left messages that haven't been returned) as I find them so intimidating.

2boys I'm sorry ds has already been discharged. Same old adage isn't it? That they only believe you once they start playing up with school .ive had the same convo with ds's professionals . Are they gonna be fobbing me off when he's 13,14 etc. I get so angry sometimes that people who have told me there's sod all wrong with my DC have got diagnosises swimmingly and I'm trying not to let it make me bitter.

Both his nhs paed and his gp would have had DKs report by now. NHS PAED made no effort to contact, and GP won't refer for second opinion as he went to Med School with said Paed hmm . CAMHs has already discharged him again too x

snowgirl29 Mon 11-Jan-16 21:23:01

But does anyone here know the process re the ados, am I meant to push school, the gp or his paed?

2boysnamedR Mon 11-Jan-16 21:53:58

I am glad to be discharged to be honest. He's is 8 and been under a pead since he was two. I have my answers as he's dyspraxic with a Lang disorder. We can all finally agree that's difinatly the case. It's this ASD traits that make me wonder as I think that's the route issue.

We both agreed he might be back in the system in a few years. I know that a asd Dx won't help him so I am not keen right now to pursue it until I have to. He could be diagnosed with anything but there's no help out there for him until school wake up - same as you.

Talking to the pead today she said unless they get strong reasons for referral they bat them back to school or the GP! So I couldn't get a gaurantee she will accept him back again. She said his statement was too weak - but unable to put in in wetting as no one in education listens to her hmm

I don't have any answers about school. Plenty of people say he's got issues but no one will write a strong report.

I'm picking out a school for my toddler ( asd diagnosis at 3 and non verbal - almost four now).

It's impossible to get past thinking it's pointless. Lots of debate and we have decided to send him to the same school. Because it's better the devil you know. They, at least will not be shocked when I tell say "if it's a problem for you, then it's a problem for you to fix".

It's wearing and soul destroying. Why it has to be like this I don't know. I think I'm going to step right out of the process for the youngest. Let the school come to me this time.

KeepOnKeepingOn1 Tue 12-Jan-16 12:35:54

Sorry DK could not diagnose. sad time she relies heavily on assessments that have already been carried out as well as making her own observations.

DK may recommend that the ADOS is conducted but it is up to the local comm paed. If pushed they may send a CAST or similar questionnaire to the school and then say, good news, there are no problems and therefore no need for an ADOS. At least if you actually get an ADOS and he passes you have right of referral for second opinion.

GOSH HFA clinic recommended that DS2 be re-referred to OT (local policy has no provision aged 8 -11) but local OT said 'no' because he does not meet local policy criteria. That's why I wanted OT in his Statement. He has private SALT and OT now because the NHS have discharged him and will not budge.

Sorry. sad angry

Try and have the DISCO done either by an indi SALT (like margo sharp) or the Lorna Wing Centre if you have to/things don't getter better/get worse. flowers

It all takes years of stress and effort (on top of having a DS with an ASD) and, tbh, I am not sure that it is worth it because there seems to have been a lowering of expectations that comes with a diagnosis (what do you expect? - he has autism) that fits perfectly with the desired model of inclusion. The judge at my recent tribunal hearing actually said that his current school (see previous posts for an indication of how bad they are) was a 'model of inclusion' and had provided a very high level of support. Total bollocks.

But I can also see why schools/CTs are pissed off. DCs like minitwoboys don't get an EHCP before starting school and so reception classes have no opportunity to refuse admission but have no LA funding for DC that need full time 1:1 in the m/s.

snowgirl29 Fri 11-Mar-16 23:19:01

<slinks back in subtly and waves to everyone again>

Since posting last time, we had a letter out of the blue offering DS a place at another school. We accepted it and it all happened very fast but the change in DS has been amazing!
All the things I said were causing issues, big classes, too many people l, too much noise that he couldn't filter/sort/process etc. New school is much smaller, quieter, his new senco is fab, and so is his teacher and TA. smile .
We no longer have CAF meetings and its been changed to a review meeting at the end of each term to discuss behaviour and academic concerns and for me to share any concerns i have with the school regarding his behaviour at home and out and about etc.

New school asked old senco for ds's records, sent over duly. Then I had a letter off NHS paed saying 'thankyou for the helpful report from DK, contacted old senco who has informed me that ds has been withdrawn from x , could you please send me contact details for his new one so I can send a repeat asd questionnaire'. So , not commenting on the ados test DK wants doing then hmm , also surely, couldn't the senco have just given paed the contact details?

Speech therapy recommendation that DK asked for was done at old school, but it took two and a half hours, because he kept stopping and getting distracted and asking the therapist if he could touch her hair. Report came back that he was average and that the assessment 'was a little longer than usual but because ds was taking his time with his answers' confused

As strange as this sounds, ds was immediately more relaxed in the new school, which meant he behaved exactly how he would do at home or at his dads etc as he wasn't masking. But the school said hes gradually getting better with them.
Also, DK mentioned in report about ds's comprehension skills and this was rubbished by everyone at the time. One week in the new school and they had a chat with me saying his comprehension was way below par! So DK WAS right! smile

Sorry for the scatty post. Id just popped on and wanted to let you all know. We're still a very long way off on the diagnosis front but for now I'm happy that hes somewhere which makes our daily life slightly more manageable.

snowgirl29 Sat 12-Mar-16 07:28:08

I would like to add/ask though. What would your advice be re the nhs paed. Would you push for another given the background to this case? Or would you give them one more chance now you have a good school on your side?

Melawati Sat 12-Mar-16 12:29:42

To be fair to the paed, she may have to ask you for details of the new SENCO, old SENCO probably not allowed to release the details without your express permission.
I think if she's asking to repeat the ASD questionnaire with new school and seems to have welcomed the DK report I would stick with it. Sounds like the new school is much more on the ball and will give a more accurate picture of your DS, and the paed sounds like she is keeping a reasonably open mind. I think it's very hard for them if the other key professionals (school, who have so much more time with your DS than her) say there's nothing there.

2boysnamedR Sun 13-Mar-16 07:17:04

In my experience if you have one NHS pead say no to asd assesment then the next one will see that as evidence not to assess either.

Ineedmorepatience Sun 13-Mar-16 11:46:38

We had a different experience! The first paed that met Dd3 disregarded my evidence of Asd and was seriously influenced by school saying she was "fine"!

She left and left us in the lurch and after much hassling we were given an appointment with another paed who met Dd3 for an hour and read my diaries and referred on to CAMHs for an ASD assessment and OT for a motor skills assesment!!

The whole process took 3.5 yrs but the first yr was wasted by the paed who only listened to the school!

Do what you need to do to move the process forward, it sounds like the new school will support you.

Good luck flowers

MeirAya Wed 16-Mar-16 12:02:05

Paediatricians rarely pick fights with schools, as most can't quite bring themselves to believe that their respected professional colleagues could be deliberately untruthful. It must be hard to accept that the deranged-looking parents they see spouting conspiracy theories might be totally unbiased and correct.

But paediatricians do often revise their opinions when a new school gives the truth without the lies useful new information

UrgentSchoolHelp Sun 03-Apr-16 07:48:22

I'm surprised DK thinks he is under the ASD umbrella but doesn't know where to put him. Would you mind telling us in what ways he is atypical for ASD?

How annoying that she lacks evidence for giving a prof DX.

snowgirl29 Sun 17-Apr-16 18:17:28

Hi there. Sorry I didn't return to this. Ive been flipping in and out of mumsnet as I've been rather poorly.

UrgentSchoolHelp DK said he came under the spectrum but she didn't know where to place him under it as she didn't have enough evidence from the professionals or lack thereof to back up a diagnosis.
Re the atypical it's hard to explain as there's many issues that don't always tick the box. For example hes an absolute nightmare at home, his dads, out for the day, and with families yet his last school insisted he was fine despite me getting different reports from ds, the lunch staff and other parents. It all depends on what the surroundings are like as to how he behaves / reacts.

Melawati I did provide the paed with the new senco details a while ago. Senco is yet to hear from nhs paed or receive the asd questionnaire from them. I'll chase it up when the DCs are back in school. I just got a standard reply saying the earliest the nhs paed can see ds again is the summer.

Thankyou Ineedmorepatience. I've just spent the first part of the holidays in hospital and I have really struggled with his behaviour the past week or so. The change in routine has set him right off kilter but I'll be having a chat with the senco when they go back.
At the last meeting the new school were very kind with me and told me to never be afraid to come and tell them and they'll do their best to support me. smile

Melawati Sun 17-Apr-16 19:54:33

snow sorry to hear you've been ill. The combination of that and holidays must have been very challenging for your DS.
The school sound very supportive though, and it's great that they are welcoming your input.
Hope you feel better soon and things start to move forward for you. flowers

MeirAya Mon 18-Apr-16 22:14:40

That sounds like some serious progress. I think it's hard for NHS professionals when schools deliberately and blatantly lie get it wrong. So paed may be much better once she is working from decent info.

Hope you're feeing better soon.

snowgirl29 Mon 18-Apr-16 22:52:30

Thankyou Malewati the new school is fab with ds. Always happy to answer my questions and shares any concerns with me. The difference in treatment has made me realise just how much I let last school off the hook for their appalling games dismissive behaviour.

Thankyou MeirAya , that's one of the things. New senco has been begging for a chat nhs paed but constantly busy.
I know it sounds silly, but those who were around for the first couple of threads will understand, I genuinely feel intimidated by nhs paed and I still don't think they'll be much help come the next appointment.

Thankyou also for the well wishes, I came down with that awful lurgy and it landed me in hospital after it turned into a very nasty chest infection, bronchitis and somethin else, ds's behaviour has been off the walls with the sudden change in routine and the stress hes obviously picking up on, I will admit, I've found it hard the last couple of weeks, what with me being so poorly I've literally had no patience with him (many people always comment how I have buckets of it with him). I'm hoping it'll settle down, or at least to tolerable now school is back open etc.

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