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School are making me feel like it's all in my head!

(17 Posts)
ChristmasBeary Thu 17-Dec-15 16:38:11

DS is 6yo and on his way to a diagnosis of ASD and/or ADHD. When we saw CYPS this month they said that they are seeing strong traits of both, we've got more appointments and we'll soon know for sure one way or the other.

It was the school nursing team who referred him to CYPS. I contacted the nursing team for support/information as I've felt since he was very young that he was different to other children we know and different to his siblings. The nursing team came out to the house to discuss our concerns and asked loads of questions, what was he like a baby, what is he like in this situation or that situation, and so on. They observed him at home and in school and they did some 1-2-1 sessions where they did puzzles and things with him. Based on their observations, they felt he needed to be referred.

He can more or less hold it together at school and because of this school don't think he has any issues. They've told me to my face that they don't know why I'm pursuing the issue as he seems perfectly normal to them, fidgety, but normal. I've told them my specific concerns: "Oh well he doesn't do any of that when he's here...". I've asked for a LIST referral as advised by CYPS and was told by the SENCO: "LIST have got lots of work on at the minute and DS is coping in school so I'm reluctant to add to their workload by referring him". SENCO has also told me that she isn't seeing any traits of ASD or ADHD therefore it is unlikely that he has either. They completed the questionnaires from CYPS but have written on them that they feel it is inappropriate as DS is, in their view, a normal 6yo boy and does not stand out from his peers at all.

It's really getting me down because it's making me feel like it's all in my head, like school think I'm making it up or using it as a excuse for shoddy parenting. It's all so stressful and every time I have to complete a questionnaire or discuss my concerns I feel like I'm massively slagging DS off, listing all of his negatives (I could write a huge list of all the ways in which he's fantastic but it won't cancel out the issues he is having) and school being so unsupportive makes me feel like maybe it is shitty parenting. Maybe it's me, maybe I made him this way because I'm a terrible mother, so terrible at parenting that I don't even realise I'm terrible at it sad

I don't even know what the point of my post is. To offload it, more than anything.

Are CYPS going to look at the feedback from school and think I'm making it up? They asked what he's like at school and I said that he holds up well at school, and therefore school think he's fine, but the effort makes him worse outside of school. They said this was very common.

2boysnamedR Thu 17-Dec-15 16:54:36

Sorry not sure what CYPS is but...
I'd bet my bottom dollar this isn't in your head.

My sons school do this "he's doing SO well at school, half of the class are struggling more than Ds, he's the fastest at getting changed for Pe..."

Yet he he has dyspraxia ( balance at 1%) and a receptive and expressive lanugage disorder ( again down at 1%) he can't hold a pencil without terrible pain and has metal plates in his shoes due to pain. I was told by the LA it was my parenting - which is quite clever really - with Shere will power alone I can make my sons muscles weak and connective tissue too loose!

My eldest has a above adverage IQ and reading and speak ability of three years above his age - I get not credit for that ever ;0)

I am looking forward to school telling me I'm reason my three year old is non verbal - I wonder how my 16 month old can talk?

Selective neglect I bet.

PolterGoose Thu 17-Dec-15 17:04:34

Message withdrawn at poster's request.

ChristmasBeary Thu 17-Dec-15 17:48:12

CYPS is what used to be CAHMS, the children's and young person's mental health service.

DS sees SALT because he gets 'stuck' on words and the teacher was concerned he has a stammer. It's not a stammer, it's like a broken record. He'll be speaking and will get suck on a word or phrase so he repeats it over and over until he either pauses and picks up where he left off or is prompted and picks up where he left off. For example, he'll say "the train left the... left the... left the... left the... left the... <prompt or pause>... station." He doesn't seem aware that he's doing it.

The other reason he sees SALT is because his spoken/verbal phonic sounds are behind his reading phonic sounds. His reading ability is really high, on par with a nine year old according to last parents evening, with comprehension to match but he struggles with level three verbal phonic sounds. So school referred him to SALT.

He's also in an early intervention group for handwriting and pen control, his writing is still very large and letters are often poorly formed to the point of being illegible, particularly if he rushes or isn't concentrating. It's improving with the support though.

Thank you for your replies, it's reassuring to know I'm not the only one who has been doubted by their child's school.

PhilPhilConnors Thu 17-Dec-15 18:04:52

"Based on their observations, they felt he needed to be referred."

As it is based on their observations they shouldn't think you are making it up.

School can't see my son's issues at all, he masks very well, and any behaviour is seen as naughtiness.
I've found that schools have very limited knowledge of ASD and won't recognise it unless it smacks them in the face, and even then the overriding feeling is that it is naughtiness!

Most people I know with dc with ASD have had a similar battle in school.

PhilPhilConnors Thu 17-Dec-15 18:08:55

We ended up going private for ds's diagnosis. During the interview, the paed went through the questionnaires that ds's teacher and HT had filled in.
The HT had written something like "I can assure you that XXX does not have autism"
The paed raised her eyebrow and said something like "given she's a HT and not a paed or psych, I wonder how she can so confidently assure me this." grin

WowOoo Thu 17-Dec-15 18:09:54

I think I'm doubted because school can't agree how much of a 'problem' my ds has or what he has. Nor can they decide what to do. They seem to shirk responsibility a lot also. It makes me want to scream at times.

Some teachers and TAs seem to be able to get the most of out him, 'get' him and his odd ways, have a good relationship with him and others not. It's the second lot that worry me as we meet people and form first impressions all the time!!

It's a constant worry for me and it all depends on who I talk to and what kind of week ds has had.

Have you spoken directly with the SENCO at school? If not, I'd make an appointment. You need more information and to be able to share concerns about things further down the line when he gets older and has more academic demands.
Also, some advice about issues that you've highlighted. What are school doing about this? What support can you give your son at home etc etc.

I've had a recent school meeting and am fuming. I won't bore you with the details, but I sympathise with your frustrations!

WaitingForSnow Thu 17-Dec-15 18:16:08

Standard practice, I'm afraid. We were told by the head Ds didnt have aspergers. When we got the dx I felt like shoving it up his smug arse!

Ineedapiginblanket Thu 17-Dec-15 18:21:33

Sounds absolutely typical of many schools to me! We had the same problem and it did slow down the assessment process!

I have learned a lot since then and I would be making sure that you let the paed/cyps know in no uncertain terms that the senco is refusing to support your child properly because she doesnt know enough about Asd/Adhd!

SENCO's are not and never will be qualified to diagnose or dismiss Asd or ADHD! Stand your ground she is being a PITA!!

Good luck flowers

imip Fri 18-Dec-15 12:46:20

Another one here who was told by dds NQT that she did not have autism. The teacher had an autistic nephew and apparently she KNEW autism and dd wasn't autistic. I, however, wasn't apparently firm enough as a parent (I have 4 dcs and am not fucking stupid!).

After two years of fighting for assessment (including 12 months of seeing a child psych who also said did wasn't autistic) we received dds diagnosis.

On the 10 page report, it was mentioned that 'imips dd does not show any signs of anxiety except for when she is in the presence of imip at pick up/drop off, school trips etc' hmm. Report then proceeded to list how did constantly show signs of anxiety/agitation.

I did go nuts at school in the meeting with the senco. I got an apology, the teacher got made a scapegoat (she's conveniently left school) and now we are all working on a more positive relationship hmm

ChowNowBrownCow Fri 18-Dec-15 13:05:05

my senco has been crap. objectionable all the way along, non supportive. When going for a diagnosis she said," try not to get too hung up on getting ds diagnosed, I will do everything I can to support ds without a diagnosis". Good job I completely ignored her and fought hard for ds. He was consequently diagnosed with asd and adhd. She has done sweet FA to help even with the diagnosis. She said we dont need an EHCP, we now have one. She refused to request the assesment, so we did it ourselves, this naffed her off and she said we wont get one. I want to post it straight up her arse. Oh and heres her punch line on every conversation we have " my dd is asd, so I know what I'm talking about". hmm

ChowNowBrownCow Fri 18-Dec-15 13:12:19

I would love to have a good relationship with senco, but I now accept that its not going to happen. So I deal with her on a very business like level, as she has done with me on many an occasion. I quote SEN law when needed, I email everything and never rely on verbal communication (far too many lies have been told by her). She hates it! But, I look at it this way, my DS is just passing through the system as a name. He is part of her job. She doesnt give him or us a thought at the end of the school day, whilst we deal with all the crap the school has thrown at my DS and us. She is an employee of the Local Authority and not my friend, and will be dealt with accordingly. Do I sound bitter? Yes, I am. Why? Because I wasted too many years, pussy footing around her. I should have listened to by own gut instinct. You should do the same IMO.

ChristmasBeary Fri 18-Dec-15 13:33:11

BrownCow, that's what mine says! Her DS has ASD and my DS is nothing like him, therefore he cannot possible have ASD. I should write the dictionary definition of 'spectrum' in her Christmas card...

imip Fri 18-Dec-15 13:38:16

Out of interest, do you have any idea how many children with and are in the school? At our school, around 40 dc with ASD from a school population of 500. Despite such a wide number of kids with autism, they still had such a narrow understanding of autism. It is -- supposedly-- an outstanding school, so it's very sought-after, esp for children with special needs.

ChristmasBeary Fri 18-Dec-15 13:41:11

There are around 200 children in school, I'm not sure how many children there are with ASD though.

BlackeyedSusan Fri 18-Dec-15 18:39:26

standard behaviour from school. twats

RoaringFirePlease Fri 18-Dec-15 22:16:06

ChristmasBeary - You are a wonderful parent for all you do for your child and for trying to get the right support for him.

Myself and a number of mums in my local ASD group have had the same reaction - there are often some who doubt your concerns, but usually this is because of their lack of understanding of ASD / ADHD / other conditions.

Schools aren't medical professionals and it is the medical professionals whose opinion matters at the end of the day. Schools can make the lives of parents extremely difficult with their lack of understanding and support.

You know your child best - its a cliché but it is so true. Some professionals have said this to me at times and it is those professionals who are interested in make the right decisions and listening to the parent.

One of the best pieces of advise I was given was to give very specific examples. Sounds simple but its easy to generalise during assessments. Instead of saying 'He melts down when he gets home', say 'He melted down yesterday when he got home because at school Maths was cancelled and moved to a different day. He then shouted / cried / refused to talk to anyone for X hours'. Don't feel bad for giving negative examples - this is the evidence they need to hear.

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