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?

that sounds very very unsettling for you, I would ask for a second opinion from a developmental paed or some sort of asd specialist paed to get the question of DX sorted once and for all, or at the very least have the community paed review the DX in light of the cognitive testing findings. I'ld be surprised tbh if the DX of ASD WAS INCORRECT. (SORRY, CAPS LOCK KEY GOT STUCK!).

Thanks TC. I can understand what he means about Alfie processing information, but wouldnt a child with asd also have this problem? The Ed Physc also said we prob dont need to do the ADOS test that he has been referred for .

Alfs teacher, who at the end of the day spends just as much with him as me. Thinks the chap is wrong on the control element.

The chap said is it was asd Alf would have the same meltdowns as he does with me. He has had a few at school but not as bad. He said because he as testing Alfie and said for example how many feet does a bird have, and Alf said 10 and smiled, so he said no come on realy, so Alf said 24 and smiled. But he smiles all the time like that, in a daft way. Just not sure anymore.

He said Alf scored avergage but wasnt under achieving on the cognitive test.

I agree btw that you can have ASD and have dyspraxia and the other issues the Ed Psych pointed out.Defo go ahead with the ADOS as that should establish that it's the correct DX beyond all doubt.

Thanks again Tc. I think we will ring the paed tommorow, if available and see what she suggests. But defo want carry on with the ados.

I don't think anything the EP has said is inconsistent with ASD. How can he properly asses in a 1:1 meeting like this? I would be inclined to stick with the judgement of the paed- these labels are not given lightly.
My DS is ASD, and he could joke in the manner described about the number of bird feet, especially as it is such an obvious answer.
A big part of ASD is a processing problem!
How was your initial diagnosis made?

Sorry you've had such a draining day.

Thanks WMF it was very draining.
Initial dx was verbal after 1hr 30 mns, she did say she didnt normally do this but had seen enough to dx ASD but not AS due to lang probs but wanted to see him in school. She observed him in school and referred for immediate ESAP funding and complex communications teams. Also to go to panel and ADOS.

I said why does he not play with age appropriate toys or he has to have routines and obsessions. But he said his nt 2 year old had obsessions with a hoover and its just what they go through He also said do we all as humun beings like the same things, no. He said he saw him on 2 occasions trying to play. One in the sandpit where he filled the sanbucket up but a small boy said "Oh Alfie" Alfie moved away cause he thought he was doing it wrong, and then it happened again and he moved away. 2 seperate instances. He said he watches rather than participates because he knows he cant do it.

How will they dx him, if they cant decide? I havent had one clear answer yet.

Oh he did say the main worry to him is that Alfie knew the basics but at Christmas "lost the info" he said this isnt normal, and could be the epilepsy.

Hmm. Watches rather than participates because he knows he cant do it. My DS watches - this again is a well recognised trait of ASD children. My DS will also 'lose skills' if he is intensely focussed on something else or very anxious. eg. when his teacher was off ill for 2 terms his handwriting deteriorated badly - he was so stressed holding it together in the face of the uncertainty in school everything else was on a back burner. Judging by what you have said about Alfie's difficult year then I am assuming his stress levels are high! Christmas is enough to tip any ASD child over the edge - my DS never copes with the Christmas term.
What sort of skill loss is the EP referring to? This can be associated with epilepsy, but is not the only explanation.
If I was you i would be pretty damn angry and confused - the EP is describing textbook ASD behaviour IMO.
I know of one family where the EP didn't agree with the diagnosis of the paed and SALT - their DS was referred upwards to the specialist communication disorders paed in our area, and diagnosis was confirmed 12 months later - all that time for intervention was lost.

Thanks WMF, I feel very confused. And don't know who to trust. Trying to get to speak to the paed. I was so convinced it was asd, I mean at Christmas for example he was out and with relatives and me and hubby but tree up. He came home and didnt notice a thing. Even though it was huge, dominated the whole room and had lights on. Would someone who was slow to process miss something like this?

I also think about the cross overs he has. He clearly has Dyspraxia and hypermobility I mean I know Dyspraxia is a co-morbid of ASD. Could it be down to funding that he doesnt want to ADOS to go ahead? Yet he is willing to let us repeat reception surely this is costly?

I swear DS didn't notice he had a baby brother until he started crawling and taking his Thomas trains .

I think a chat with your paed may reassure you - as long as the support is correct I guess the actual diagnosis takes second place.

FWIW we saw the paed with DS2 last week, because i have concerns about ADHD/ Aspergers. She drew a venn Diagram of ADHD,ASD and Dyspraxia to illustrate how they all overlap. She said the diagnosis depends on which condition dominates the others, but parts of all of them could be seen in one child. I guess a child that fits in the overlapping bits is complex to diagnose, and the 'label' can become a grey area

lol WMF I know what you mean.

We had SALT today, she said he uses vocab correctly and in correct context but that there is an obvious delay in his answers. She also picked up on the fact that he rambles on and doesnt know when to stop. She also said that the stammer he had is more likely to be a processing delay. However I explained about the asd confusion and she said his speach probs would happen in both scenarios. She has referred to an asd salt though but cannot help him until the funding is in place