Whoopeee Alfie to repeat reception

[alfiemama]

Had a very intense meeting with the top man in charge of Ed physc. He actually apologised for Alfie not being seen. Said he is very concerned by what we have said and agrees that Alfie should start school again with support and wont have to skip a year later on. He even observed him for us.

We are still waiting on the funding. He told us to apply for the ESAP funding as an emergency, thought senco had done this and apply for statementing as Alfie will be classed as a priority so they are goingto come in and do a cognitive test (not sure what this is yet) for statement.

He also said that we should look into the epilepsy again (activity but no set pattern) as Alfie seems unable to retain info and his stammer has become so bad, we think he may have had another absence.

We also found out that the paed thinks he is the worse case of undiagnosed autism she has seen in 10 years. Grrrrrrrr to the nursery who and HV who failed to spot, never mind us

We have asked the school to put up the funding so they can recruit asap rather than wait for the go ahead as we are running out of time. They are having a meeting tommorow, I know its cheeky but I think you have to be.

Thanks to all who helped me sort things with Alfie x

ps Does anyone know what this cognitive testing is?

[TotalChaos]

glad the meeting worked out well, and you have sorted out him redoing the year. Make sure you get it in writing about him not skipping a year later on!

I think the cognitive testing will be non-verbal intelligence tests - when DS had this at age 4 it was copying patterns of blocks, and identify a similar picture (out of a choice of 3) to the one the psych was showing. i think sometimes they get the kids to do a jigsaw as well.

[anonandlikeit]

Well done Alfiemama, its a great opportunity for Alfie to be able to start afresh, I hope the school are able to get it sorted in time.

Cognitive tests will give a baseline level of his understanding & "functional age" it will give them an understanding of the level of support he will need in the classroom.

[bubblagirl]

well done im glad you have what you wanted as the outcome x

[Phoenix4725]

fingers crossed for the funding .Glad things are movng ahead.

[alfiemama]

Thanks everyone.

I just hope the school say yes to the funding so there is no delay. I think they may do but all boils down to money. I said to his teacher "I know its cheeky" she said no it isnt, its about his rights, thank god we didnt move.

[coppertop]

I'm so pleased for you, Alfiemama.

Fingers crossed for you that the funding gets sorted out. xx

[alfiemama]

Thanks Coppertop.

Ironic thing is that he had the OT appointment the other day, she asked what our concerns where and we mentioned dyspraxia as paed had referred for this. All the way through she said he has co-ordination probs and balance and referred him to physio.

At the end I asked her did she think dyspraxia and was it linked to the autism. She said "Autism, as if I had 2 heads" she then said she thought his eye contact was fine, me and hubby both noticed he didnt look at her at all, she soon backed down when I said the paed dx this, and she went on to waffle that she wasnt qualified but no there isnt a link. I then stated that dyspraxia was a co morobid of autism, daft lady to say the least.

Why do people think autism is so in your face, sometimes it is very complexed and not obvious straight away.

[Widemouthfrog]

Alfiemama,

Great news. Alfie deserves the opportunity to start afresh with the support he deserves.

FWIW, our experience was very similar. No diagnosis until DS1 started school, and then there was shock from the agencies involved that he had been through 2 years of preschool and the warning signs had not been picked up (it took school 2 weeks to realise). Apparently heads rolled. We also got support from school before the statement funding came in. I think if need is great enough then this can be made to happen as you say. Good luck with the meeting tomorrow

We still have other professionals question our diagnosis, because he makes eye contact and will chat and answer their questions in a 1:1 clinic. Yet he is very obviously autistic now.

It seems our other issues cross as well. DS starts speech therapy tomorrow for his stammering, which is becoming much worse, and he is undergoing further tests for his epilepsy as we are concerned we are missing night-time seizures.

[HelensMelons]

Alfiemama that's brilliant. I hope you get the funding you need. It finally sounds like you are being listened to and have some support.

[bubblagirl]

i'll keep everything crossed hope you get the funding x

[alfiemama]

Thanks everyone

Widemouthfrog, god that does sound just like Alfie, we are thinking the same about the seizures. Has your ds had seizures during he day? Or absences? The ed Physc said that the 1 hour ecg will only pick up activity which is happening at the time and we did get a letter saying there was activity but no set pattern.

I wonder what the salt will say about the speach. Last time we went (to a diff one, not autimn specific) she said he was using it as a delay tactic. He was only stuttering occasionally then. Now its on every word. Its heartbreaking to see your children moving more and more away from you. I know there is a lot worse of though and do thank my lucky stars.

Good luck at the SALT and if you can please let me know how you get on.

[Widemouthfrog]

Hi Alfiemama, just back from our first session. It went ok. basically we have to spend 5 minutes a day of structured 'talk time' where I talk with DS1. At first we are aiming at 'good talking' at a one word level. this will gradually be increases to more words, then sentences and phrases. He will be assessed every week to see if the rate of stammering is improving.
We are having a sleep-deprived EEG in 2 weeks to find out more about the seizures. We have had a 1hr EEG before, which showed activity, which was inconclusive but after further seizures he was medicated, which I do think helps.

We do not have absences in the day, but the nature of the night-time seizures depends on the severity. If they are focal he cries out and smacks his mouth, judders, and is very confused afterwards - easily missed if you are not in the room as they happen. He is usually very tired the next day. When he was not medicated the seizures would become generalized and he would shake violently.

Hope the meeting went well.

[alfiemama]

Thanks WMF

Glad the meeting at salt went well. Sounds like things should defo improve. Lets hope our salt is the same lol.

Thats very interesting about the vocal aspect of the seizures. Alfie has been crying out a lot in his sleep, just thought normal dream like state, but maybe there is something more in it.

ust read your post about hypemobility, looks like our children really do mirror each other. We have also been advised to use the cutlery, freaky.

[Widemouthfrog]

[alfiemama]

sorry key board keeps jamming, think ds's have been at it,

[alfiemama]

The school have just rang. The top dog at Ed Physc is going to observe Alfie at school on Monday and then will take him out and do some 1-1 work with him, and then wants a meeting with us. Finally after 7 months waiting, we are finally getting somewhere.
I think I will be celebrating this week.

Sad thing is its all happening on his birthday. poor chap

[Widemouthfrog]

I'm still shadowing you - Ds's bday is next week too - spooky - he will be 6.
I've found these sessions with the EP very constructive. It is the EP you need to get on board for statementing.

[alfiemama]

Freaky WMF Alfie will be 5 though.

I know he is a nice chap aswell. Very sincere. Apparently he is the highest person we can see in Lancs. He said children who are statemented quickly come under 4 groups (cant remember what they are) but he said Alfie is one of them.

Just relieved now that its not all been in our head as to how bad he really is, if that makes sense. I feel like we are finally being listened to but also that first initil sadness is creeping back.

Your ds is statemented isnt he? How long does the process take?

[Widemouthfrog]

Statementing takes up to 6 months from the initial request, so push to get this started ASAP - though the process may stall with the summer holidays.

Hang on in. We went from the depths of despair when Ds started school to being in a very good place now. With a good 1:1 his life has turned around.

School are expected to provide up to 15 hours 1:1 in our area without a statement. So you should expect some support from the schools delegated budget in the interim.

[alfiemama]

Thanks WMF

They are sending the paper work in this week, thank god, also the paper work for the ESAP funding at the same time as per the ED physc.

Thanks again WMF, you have been a massive help.

[fatzak]

DS has problems with his speech alfiemama which I am certain is due to his epilepsy. We find that the higher the dose of medication, the more he struggles to find the right word and does sound like he is stammering. His neurologist has said that children with epilepsy are prone to cognitive probs especially if the seizures affect part of brain relating to speech.

We've had the whole lot of EEG including the video telemetary the next thing is a PET scan in London to try to find out what exactly is going on!

[alfiemama]

Thanks Fatzak, Alfs not any medication as yet. He was kind of given the all clear, just said activity there but no set pattern but ed Physc said because he cannot retain info and has this very bad stammer all of a sudden, he wants it looking at again.

That maybe why he wants the cognitive test doing, the only thing is he is very good at jigsaws in fact oddly so. I wouldnt have thought would have been able to do this if they struggle with things like this.

[Phoenix4725]

they split dc into boxes .

Extra needs
Addtional needs
Complex needs
Severe needs

This is all done by ticking boxes and depending where they fall there is amount of hours guidelines

[alfiemama]

Ah now thats interesting Phoenix, thanks.
I think Alfie comes under complex.

[alfiemama]

Ok had the meeting with the Top dog at Ed Physc and he observed Alfie and did the cognitive testing on him. I was in a meeting for 3.5 hours, totaly drained

He said in his opinion Alfie doesnt have asd but Dyspraxia, dyslexia and a processing problem. He things now that we should re consider repeating reception as the probem will never fix itself and wont make a difference to his learning. Instead learn how to break his teaching down into small chunks he can comprehend. He said he needs 1-1 and will not need to go to sn school. He said basically his brain is wired wrong, I said what with his brother having his heart wired wrong I didnt do very well.

He said its our decission whether he repeats or not but to seriously consider.

He is also said in some of the tests Alfie was testing him not sure I agree with this, he said manipulation was a strong word but that he was indeed complexed and we need to work out why he is doing it.

Dont know what to think, in one way we had the autismn, dealt with it and was moving on, but now its all new to us and panic has set in again.

Who do I believe, Chief of Ed Physc for Lancs or communtity paed? who said worse case of undiagnosed autism she had seen in 10 years?

My head is battered