5 years on and no further forward!

[lilMrInvisiblesmum]

As the title says really.

We have had problem after problem with appointments being cancelled, reports not arriving, things going missing.

I am at the end of my tether.

I am sure my son has an ASD, the triad of impairments for ASD describes him pretty well.

His Paed is currently off on the sick and not due back till the middle of march, he last saw her in July! I mentioned ASDs and she said don't be stupid he isn't autistic (may not have been her exact wording) as he has good eye contact, WTF

I'm waiting for an OT report from October.

I'm very concerned that because of the time going passed that they feel that as there has been diagnosis in 5 years there is nothing to find, but i'm the only one who knows exactly what has gone missing/not happened etc.

I don't even know what i'm looking for but i'm sat here in tears and can't see an end to any of this.

I had exactly the same problem, i can sympathise with you totally. I had to make official complaints about OT, Paed and SALT, all i had was referrals and appointment after appointment since ds was 2 years old and comments such as yours.

He will be 6 in a few weeks time, after complaints, seemed to get the ball rolling and some 'real' assessments were made.

Have you tried making official complaint to the NHS?

Sorry to hear that claw.

To who and how did you complain, i wouldn't know where to start tbh.

It seems for the most part he has been a victim of circumstance yet the fact that they have plausible excuses doesn't help me.

All the excuses i got were plausible, maternity leave, annual leave, sick leave, no therapist to cover your area etc, etc. OT assessed in December 2008 and im still waiting for the report! I seem to do nothing but complain

You complain to the NHS trust for your area and they have to reply within 28 days.

www.carersfederation.co.uk/what-we-do/icas/self-help/letter-template.php example letter might help you.

Although they came up with even more excuses, it certainly kick some arses into gear.

Its so frustrating isnt it, you feel as if you are imagining it all without any 'experts' to back you up.

What assessments has your ds had?

Do you know, i'm not even sure.

He has had an OT one well i pressume that's the report i'm waiting for!

Speech and language.

His paed made him do a few things while we were there but as i said there is no issue as he looks at me.

I feel quite shit aswell because i've not been pushing as much as i could have, i get so tired of fighting for everything and so there have been periods where there has been nothing IYSWIM.

Also he has had other issues which probablu have nothing to do with any sort of diagnosis, where we have had the same sort of problems.

I feel they have me down as a deluded liar tbh.

EG - He has glue ear so it was decided having his tonsils removed would help. A sleep study was done, then lost, so the surgeon decided as his tonsils were big they were to come out but left his anenoids.

He still snores etc, he still gets glue ear but they're not interested.

I am quite a fiesty person and know how to stand up for myself and my children but when it comes to HPs i become so passive, they have a real way of making you feel stupid/delusional/menta/insert any other

GRRRRR

I've gone from very sad to very angry again.

I had that too from Paed, 'there is no way he has autism' based on a developmental check of stacking bricks, doing a puzzle etc! Its difficult with HP's as you are lead to believe that they know best.

Did Speech and Language report identify problems?

How about school, any problems?

What problems is your ds having?

The problem with ASD, is that it is such a broad spectrum and sometimes the signs can be so subtle and not recognised by anyone other than ASD specialist.

I was told by CAMHS they saw no signs of a social and communication disorder! Yet a week later an ASD specialist told me it was obvious after observing and interacting with ds, that he was definitely on the spectrum.

Trust your instincts, not matter how much others might doubt you.

Yes, he's been with SALT for years, that in itself would point to a problem, no? It's not as if they try to remove children from their list as quickly as possible due to overstreching at all!

School say no problems however i disagree.

I think he has problems identifying with other children and forming relationships with them.

He is rapidly becoming the class clown and that really upsets me.

I don't feel he is working to his abilities as ATM he is average, so they're not bothered.

Things can really bother him, so much so he is positively unhappy, yet he'll veer from that to wildly extatic within minutes.

he has obsessions, that were containable but are now becoming more prevailent in our lives, i fear he is retreating to a safe place and worry that if this gets worse it will be harder to help him, if that makes sense?

Our old S&L person was wonderful, but she went off to have a baby. I was very happy for her but sad for my boy.

She felt there was something there but couldn't put her finger on what. His P1 teacher the same.

His teacher now hadn't even realised that he was left handed after 5months, so i'm not very optimistic about her observations

Makes perfect sense to me, my own ds will revert into himself rather than be outwardly distress (making it even harder for anyone else to recognise!)

Unfortunately teachers can be the last to notice any problems, especially if not being disruptive. I too had to point out to the teacher after being at school for over a year, that ds is left handed and this is why he looks awkward using right handed scissors!

2 options i can think of.

1. Get an appointment with Paed when he returns in March and insist that you would like the opinion of a social and communication specialist.

1. Complain about the service and care your ds has received and state what you would like to happen.

Oh and chase up your OT report, complain to the Manager of OT service that you are still waiting for your report.

It is hard work, it is tiring and i know ive felt like just giving up. You will get lots of helpful advice on here from others, its been my lifeline at times.

'Finally, from this day forward, write down the details of every single discussion you have with a professional, every message you leave etc etc. It is the only way to systematically move the system to support you and your ds.'

Yes, i've realised this is the way i have to go, written clarification of things also i feel, that way no one can say they didn't say something or that i got it wrong.

If i wasn't living this i'd never believe it, it really is the pits!

The worst thing i find is when you meet someone who you think is different and actually means what they say etc, then they end up doing similar or in the case of my sons school nurse actually lying' about what others have said and having a completly different attitude on the phone compared to our face to face meeting!

Thanks claw and starlight, i helps to have people say i should trust myself, it is so easy to forget.

'Oh and chase up your OT report, complain to the Manager of OT service that you are still waiting for your report.'

Finally got someone on the telephone, been told i'll recieve a call either tomorrow or wed. If i don't i will complain to the manager.

I do nothing but complain these days, seems like the only way to get anything done. Unfortunately parents do seem to be left to hold everything together and do all the chasing.

I recently moved boroughs and my new Paed is brilliant, i cant praise him enough, he has really taken charge and got things moving.

You will get people rolling their eyes when they see you coming and avoiding your calls. Just remember you are making a nuisance of yourself for the sake of your ds.

Good luck.

'Write down the date and time of the call, the name of the person and contact.'

I am so bad at this, i was so shocked to get an actual person i forgot to ask their name!

I will do better next time, i will.

Thanks claw, this is the second or third or fourth paed DS has seen, apparently they have had real trouble with this position.

The pattern seems to be new paed, we have an appointment, lots of noises then nothing.

Ed Psych has been mentioned but nothing more than that, what do they do?

Had exactly the same problem, by the time our next appointment came around, paed had been replaced by a new one, no referrals had been made, chased up etc, etc. New Paed would then say he was going to do this, that and the other, then leave and back to square one!

I started to write down exactly what he had told me he was going to do and if he had not confirmed this in writing within a month ie copied me into referral and his report, i would chase up and keep on and on until i had copy of referral and report. I would then have details of referral and would then start chasing them up!

I paid for private Ed Psych assessment, i got so fed up of waiting. They identify your dc's learning strengths and weaknesses and make recommendations.

If you suspect autism, ask your paed for a referral to someone who specialises in ASD. In my area we have an Autism Assessment Service and my Paed is part of this team. Not sure how it works in other areas.

and if you complain about the inconsistent pediatric care your ds has received, you can ask that your ds see a Senior Paed in future and not a Locum.

OK so, OT still haven't got back to me, but i've left a message on the answer machine.

SALT - Got back to me and was very helpful, was surprised by a few things, and is going to write to the paed to confirm that his hearing issues are impacting on his speech as apparently me telling audiology this, is not enough, they know my son better than i do.

I've noted that i spoke to his SALT and noted that she said she was to get in touch with the other, so when she returns i'll make sure it's happened.

When his Paed returns she wont know what hit her!

Yes i did. I am down to get an appointment if there is a cancellation, apparently they are all booked up otherwise.

Seems i missed OTs call, she left a message saying that she'd sent a draft report out already, but to give her a call to check addresses etc.

Lil, its so frustrating isnt it!

Complain, complain and complain some more, you wont receive an adequate answer by complaining, you will receive more excuses in their reply to your complaint. But things start to happen after you complain, appointments are made, phone calls are returned, referrals are chased up and they tread very carefully in order that you dont complain again.

claw3 - Thanks for replying, could you have a look at my other thread please, i messed up my name change so i am the op.

here