Just received dx report

[claw3]

and my heart sank! it is litter with inaccuracies from start to finish. I know i can ask for amendments etc, but i feel they havent listened to a word i said about his history and what my concerns are.

The report is basically 'mum says he does x, y, z' and we found he has Autism. Despite them observing him twice for 2 hours, there is no mention of how he behaved during those observations. He was unable to answer a questions appropriately, constantly fidgeted and scratched his skin, at one point he held his eyes open with his fingers and told the SALT in the room with him he couldnt see the pictures because they were 'blurred' 'moving'. He told the SALT that children 'bully me'.

Is this what reports usually consist of?

It does Tribunal!

I emailed them yesterday with some amendments, for example background states that ds was first seen by a paed in Dec 2009. FFS, he has been seeing pead's, dietitian, OT, SALT since he was 2 years old and thats just the tip of the iceberg, the report sucks!

I was just reading through the report again and just commented to DP, i am going to have write the report and include the bits i want included and send to them.

I have been waiting for this report to arrive for my parental contribution, deadline 14th. Guess what i will be doing this weekend, instead of enjoying the sunshine!

The Recommendations, what do you think?

1. A social skills training programme at school to develop his social skills.
2. Ancillary assistance with dressing and toileting if required.
3. Adult support to help him understand and complete tasks.
4. He should do as much PE as he is comfortable with, rest if he gets breathless and use medication as prescribed. Medication should be available on school journey?s and trips.
5. Changes in routine should be introduced gradually and explained to him beforehand when possible.
6. He would benefit from having a quiet place to retire to and a familiar adult he can speak to if upset.
7. Ongoing support from the Child and Adolescent Mental Health Services.
8. Advice from the Autism Advisory Service. School to arrange for mother to meet with the Autism Advisory Service if required.
9. Review by the speech and language therapist.
10. Ds has been prescribed Melatonin, 3mgs at bedtime, to help him sleep well at night.
11. Ds is undergoing a statutory assessment of his needs.
12. Advice has been given regarding genetic counselling if required.
13. Mother is aware of Bexley SNAP as a resource and is applying for the Disability Living Allowance. A local resource leaflet which includes a reading list to be sent to mother.
14. Ds has been discharged from the Autism Assessment Service, his needs to be reviewed at regular meetings at school with the Autism Advisory Service and Speech and Language Therapist.

Tribunal, not miserable, just disappointed. I expected more. I was looking forward to having a life back for a few weeks and thought ALL i had left to do was include dx report, deliver parental contribution, then i would have a few weeks off, before round 1001 began, silly me eh!

Thank you Tribunal

I had to LOL at the Genetic Counselling!

Just making amendments to the dx reports now.

If it has been written in a report or observed can i remove 'mum says/reports'?

Also if it is a medical fact that can be checked if need, things like mum reports that ds is anemic or mum reports he had a brain scan at birth. Can i remove mum says?

or if a difficult is written in an IEP or school report, can i remove mum says?

Cheers Tribunal, im going through their report now, removing all mum says and making amendments in red and i will email back to them and i will also ask them to amend their recommendations accordingly now they have the correct info.

I will tell them i have removed 'mum says/reports as this is backed by medical evidence/reports/observation and is a fact, not an opinion.

Politely of course!

I also emailed them yesterday, as ds has been talking about "ripping off his skin" and getting scissors to "cut the funny bits off of his tongue"

On Friday when taking ds to school, he became convinced that he had "things" on his face and hands and needed to get them off. He ended up curling up into a ball on the playground floor until he could wash the "things" off his hands and face.

No recommendations of OT in their report

OT at feeding clinic is saying it is not her remit, she only deals with eating. Paed is saying its an 'autism' thing and i need to accept that there isnt a cure idiot! CAMHS are saying they can deal with the 'worries' but not the sensory issues.

Ive asked for their advice as to who should be dealing with it. Everyone wants to pass the buck.

Good idea Tribunal, i will get stuck into this report and also ask what they plan to do about unmet needs and suggest a meeting.

Brilliant, thanks

That's bad. How disappointing and frustrating.
We have to wait so long for our dc to be seen and assessed and they send reports like this....full of 'mum says'!!!

I'm waiting for my ds's DX report, should hopefully arrive in the next 4 weeks.
I'm hoping it won't be 'mum and dad say' all through it.

After our 1st visit to the asd team assessment back in february, the report that was sent was littered with 'parents say x,y,z'.
Nothing at all was written about the 1 h observation they did of ds.

I'm just hoping they will include their opinions, findings and results of all the things they did with DS when they assessed him, or what is the point of getting a report?

Disaheartened along with Claw.

Genie, exactly i have had years of mum says, what is the point of observations if their findings are not reported! I know they will say their finding is that he does have autism

They have also reported the behaviour of scratching/wiping his skin when anxious and self injurious behaviour as if they are two different things (and failed to mention that they observed him scratching/wiping his skin)

They observed him constantly wiping/scratching at his skin for an hour during the observation. If his anxiety is not reduced, he continues to do this and it results in sores, blisters and even then he continues to wipe/scratch even when bleeding.

What is so bloody hard to understand about that!

Good luck with your report Genie.

Im beginning to think i must be speaking a language they dont understand

and he told therapist that he wanted to make the children in school happy. When asked why, are they unhappy. He replied they are always unhappy with me. Therapist asked what do they do when they are unhappy, he replied bully me.

He was refusing school ffs and its not worth a mention. I cannot seem to get through to them, whether the children were unhappy with him or whether he was being bullied or not is not important. He 'feels' that the children are unhappy with him and bully him and needs help.

The report doesnt reflect ds at all and he acted 'typical ds' during the observation. I really thought i would not have to explain seen as they had experienced first hand.

Yep, i was told it was being taped and ask to sign a form. I will request.

Just finished amending report. Its bloody stupid, ds has received his dx from a bunch of baboons. Honestly a monkey could have written a better report.

I have given them copies of all reports. They report that mum has no concerns with his hearing, i have been asking them for an auditory processing assessment and given them precise details of his hearing difficulties, failed hearing tests, he cant hear the differences between sounds and words reported by SALT etc.

No concerns visually, he couldnt move his eyes until he was 5 and has been until an eye specialist since he was 9 months old and has tracking difficulties identified.

Speech communication etc development normally and no difficulties were identified until SALT in November 2009. HV referred to SALT when he was 2 years old

No mention of feeding clinic, OT, Dietician, eye specialist. No mention of SALT or Paed involvement unitl November 2009.

I despair! I obviously spent 5 and half hours in total talking to myself during the ASD assessment.

Tribunal if i wasnt in such a rush to get it, i would!

I have amended the report in red, the only words left in black are general purpose words such as 'the' and 'he'!

What if they refuse to amend? Im panicking i need that report for my parental contribution.