Ds's assessment next week. School told me to forget about any help he's not 'severe' enough!

[AwaywiththePixies27]

Hi there I posted a while ago about my Ds under Misspixietrix. I haven't been able to log back on since heartbleed so relented and reregistered. He's gotten worse since I last wrote. I tried to get a private appointment to help but was told the Dr could not diagnose but could do therapeutic work in . I've had several meetings with the school and they now all have the same suspicions (ASD). I was told that they do have concerns for Ds as he is well below where he should be academically. However, I should expect to be turned down for any statementing because they don't have severe concerns for him. I was grateful for their honesty but now feel this is going to be one constant battle after another. I have been ill recently and need to pysch myself up for this. Does anyone know how the statementing process works? I was told they have a deadline of 6weeks, my worry if dx is given and subsequent applications etc. That deadline will fall in to the summer holidays.

Don't worry about the deadline falling in the summer holidays. The kids are not at school but the 'system' rolls on regardless. The initial 6 weeks is (IIRC) the length of time the LA has to decide whether or not to assess. I cannot speak for all LAs, obviously, but ours is quite prompt at decision-making.

Then, assuming they decide to go ahead, there is a further 6 weeks in which time everyone involved with your DS, including you, has to submit their report. This period actually stretched into the summer holidays for us, and the Educational Psychologist came out to assess my DD at home. As the parent, you also have to write a report about your DS's behaviour, how it impacts upon your family, etc. This is really your chance to put across your child's side of the story, so be as detailed as possible. Make it clear exactly how distressing school is for him, and how behind he is.

If the school think that your DS is academically well below where he should be, and he possibly has ASD, how can they not have severe concerns for him?

Thankyou Barefootgirl Precisely! But then we had a senco leader once tell me "It's JUST behavioural issues which just need persistence from mum". That next week when the GP referred him the same senco told me "oh that's good he'll get the help and support he needs now"!! I think it is because it comes down to funding because the Head actually mentioned that In the meeting.Unfortunately for them it's not their word against mine because. the Ex came with me to the meeting.he withdraws in class as a coping mechanism because he finds it (big groups/loud noises) overwhelming.so I think that's what she meant by not severe as in he doesn't disrupt the class maybe? (that's odd to given he's bolted out the door before too). You know the paed that we will see next week. Will she come out and assess him in the school environment too? Sorry for all the questions but I'm new to all this.

Oh dear, you have a SENCO who doesn't really known what she's doing. It's all over the Code of Practice that schools etc shouldn't be taking into account just academic issues but also behavioural ones, and the fact that a child is withdrawing and not coping should be ringing alarm bells. How far behind is DS academically? Can you get him referred to a paediatrician? If people think he has ASD he does need a paediatrician to diagnose him.

My daughter is very advanced academically, but has severe behavioural issues that have led to her being statemented (and eventually to a place in a special school ). As Icimoi says, your SENCO doesnt know what she's doing.

That's what the appointment is this Tuesday Icimoi to see the paediatrician. I tried to go private as we've had such a long wait but the only private one told us she couldn't diagnose? But could offer therapeutic treatment. Exactly what therapy were they planning on doing without a dx? . I have heard good things about this paediatrician so hopefully she can help.

If it comes to it, video dc's distress/behaviour in a major meltdown at home. Mobiles are very handy for this. It will be very powerful evidence - its not just what goes on at home thats important!

sorry should have said its not just what goes on at school thats important!

pixie how old is your DS? He does sound similar to DS 7 who in Y2. Even though we and the school were worried about his progress we were told he wasn't far behind to be able to get a statement. He finally had a dx of ASD last year and now the school has requested SA with the support from the Autism Advisory teacher. They suspect DS main problem is his sensory difficulties and that's why he shuts down at school. He is very passive and needs constant prompting and redirecting. He is not disruptive at all so very much like your DS.

SENCO's reasoning for not applying for SA earlier is that the school needed him to meet the LEA criteria first before applying. We should have applied for it ourselves but we believed her he didn't stand a chance.
So first in reception and beginning of y1 we were told he didn't meet criteria in terms of being behind and he didn't . End of y1 they tried to see if he met the criteria in terms of language development but after some tests they said he wasn't far behind either but that's when he got his ASD dx and realised his main issues were sensory that's when she said this is the time, now we have a really good change he will meet the criteria.

We are expecting the LEA decision in the next few days. SENCO has urged us to appeal if the LEA refuses SA.

Make the request for Statutory Assessment yourself, don't wait for the school.

I hope the appointment with paed goes well, remember to take notes ( maybe take an extra copy for paed) and think of specific examples of the behaviours that cause concern.

Thankyou for your advice everyone. Tambaboy Ds is 5.5 nearly. It's funny (not in a good way) you should mention the sensory issue re shutting down in class. On the way back from a day out once with GM we nipped to the toilets before going for the bus. The minute someone switched a hand dryer on he sat down crossed his legs and covered his ears. He wouldn't move until it had stopped. Does anyone know how I go about asking for a statutory assessment please? Do I just request the forms or whatever is needed?

Visit IPSEA website, it has model letters and offers advice on the phone (pre-booked appointments).
SOS!-SEN is another good one.
Best of luck.

Have a look at this book, it gives you an idea of what sort of things to put, language to use, the sort of evidence you need etc.

www.amazon.co.uk/Special-Educational-Needs-Getting-Statements/dp/1908603585/ref=sr_1_16?s=books&ie=UTF8&qid=1404055713&sr=1-16&keywords=special+educational+needs

Pixies

Your SENCO clearly has no clue so is not acting in your son's best interests here.

Apply for the statement yourself and asap because these are going to be replaced sooner rather than later now with EHCPs.

www.ipsea.org.uk has model letters on it you can use. You will need to write to the Chief Education Officer at your LEA and give this person six weeks to reply (*mark that date on your calendar). LEAs work during the summer holidays too.

BTW the only criteria for a statement is need of one; none of this garbage about having to be x number of years behind etc. Such blanket policy is unlawful.

There's a useful statistic in the adult autism strategy 'fulfilling lives' which says 70% children with autism have a statement of sen. NAS research found similar results. Now more children are being diagnosed schools and LAs want to downgrade autism to a less serious disability to save funds, but autism is a pervasive developmental diagnosis, it pervades every aspect of life. for DS his autism is a factor in every interaction, every sensation, every sentence spoken or processed, he walks down the street picking out details (currently numbers on lampposts) while missing the big picture (danger, cars) all day everyday he has to work much harder just to tolerate or 'get' things other children enjoy or just absorb. How can they say it's not severe enough, how do they even know what it feels like. Perhaps they should do their job for a day with their hands tied behind their back, or a blindfold, or in a wheelchair and then say it's no big deal. I know it's hard work for DS because when he gets even slightly ill, a sniffle or cold he can't do anything, he becomes significantly more severe and incapable of following the simplest instruction, that's when I remember how hard he is working every other day just to make sense of it all. The fact he is doing well academically is because of all the extra help and support and differentiation (he has full time 1:1 + ABA). He's passive, not misbehaving and caught up a lot academically but still needs autism specialist support to maintain progress and stop gap getting wider and wider. Because the other kids don't have the same barriers to learning and for every step forward it's twice as hard for him.

If you can afford a Private EP report or even private SLT assessment that can highlight gaps that can help. Schools often don't know the gaps are even there.

Excellent post Agnes

Thankyou Agnes. Re sensory issues I read somewhere they asked if someone placed your desk on the tube platform and told you to get on with your work would you be able to concentrate and work as effectively? That's the equivalent of what you're
asking Of a child with all these heightened senses.

There are some quite useful videos of sensory experiences on youtube. I get DS brothers to watch some to try and explain. I get so annoyed by this autism isn't severe nonsense. The very fact its a triad of impairments + poss sensory issues means it can't be minor. Our SEN officer tried to persuade us statements and SS places were only for more severe children and DS wasn't severe - when I asked what she meant by severe she said he would need to have a feeding tube to be considered severe! Last year DS caught up a lot academically and I asked the EP (who is supportive) does that mean your colleagues are going to say he doesn't need help anymore and he went back and rewrote his report to make it clear DS still had high level needs and needed high level support even though he was no longer academically as far behind. Teachers often don't know what can be done / achieved as they have often never seen good quality autism intervention so don't know whats possible. I think there is a view among many it won't matter what you do as the child can't learn anyway - DS last school was like this - it was only when I taught him at home and he jumped several NC levels they realised it wasn't that DS couldn't learn but them who couldn't teach (not that they ever admitted that but the progress spoke for itself)

Thankyou everyone. Sorry this is rather long. Well he had his assessment yesterday and I'm still trying to make sense of it all this morning.
The Paediatrician said he's got Developmental Delay. That he has the mental age of someone 2years younger than he actually is. Told me that he does have some 'autisticy things about him' (her words not mine) but she's not convinced because he was 'too sociable' with her and kids with autism don't usually interact with strangers. (I know this not to be true. A friend of mine was telling me his son is 'over friendly' with people - doesn't mean he hasn't got it.
He's already been under SALT for a number of years now - never effective. The Paediatrician wants him to have a full audio hearing test, is re-referring him back to speech therapy and said she's going to write to his school and ask them to provide extra support for him and also for me managing him? She glossed over the sensory issues
Never asked me about his sleeping habits.
I thought I was prepared yesterday but I was taken aback by having to rake up my life story . The letter from the Teacher and Me that both went with the GP referral never made it to the Paediatrician! I remember seeing the GP come out of his office and hand the girls the letters and asked them to make sure they went with the referral.
I was talking to Ds's Teacher last night and they all think the Paed needs to come out and observe him in school to see the difference in him.
The Paed is asking for a report from school and will decide whether she thinks a school visit is appropriate. I'm meeting the head this morning to tell her she must ask for one in the report. I trust his Teacher implicitly and know she will be direct In what is asked of Her, just got the feeling the rest will try and sugarcoat over everything.
I spoke to the SENCO again yesterday, was asked if I was happy for them to wait until he starts Year 1 before they start building a clearer picture of what he needs.I just replied that I wasn't sure and that the Paed obviously isn't happy to wait until Year one to get him some help. We are to go back in 4-5months after all the in between assessments have been done and see how he's coping. I took this as a bad thing last night - on reflection I'm going to see it as something positive. I now have a range of professionals that will get involved that I can throw both barrells at.

Sorry that Last post was long. Has anyone got any experience in GDD or am I being fobbed off?