meeting with senco - raised all sorts of qs - where do I go next?

[whojamaflip]

Hi - some of you may remember me and ds but just a quick recap.

Ds (4) epilepsy (med controlled), SLI and other quirks is in reception, getting on really well with 12hrs 1-1 each week. Brilliant LTA who is working on a speech and language programme and using ABA and getting fantastic results. Ds has gone from being non-verbal (10 recognisable words) in June to talking in sentances and really trying to communicate now.

Had his IEP review yesterday and the school are really pleased with his progress (as are we ) but the SENCO has raised some concerns which I need some help with.

She asked if I could arrange with his SALT to do a Sematic Pragmatic assessment as he has difficulties with pro-nouns and connective words. She also says he has demonstrated problems with word retrieval.

Also thinks he may have an Auditory Processing Disorder which is linked to the SP prob. Also he is showing signs of Dyspraxia and AS traits.

The main thing that came up was that she believes that his problems may stem from the epilepsy having an effect on his neuro-development which is now manifesting itself as the above.

She also stressed that she is not qualified to make diagnoses but she is a very well respected SENCO who also works in a specialist dyslexia and dyspraxia school.

She has suggested that I find a neuro physologist who could help design a programme to allow ds to fill in the "blanks" through exercise etc. I know its not a cure but am willing to try anything to help ds and make his life easier.

Hope this makes sense - been writing this out from notes I scribbled during the meeting yesterday - it all made sense when she was talking but I'm not sure I understand exactly what she was getting at iyswim ]

Does anyone know what I'm talking about or have I got the complete wrong end of the stick

There are loads of neuro development therapies, which many of us here have had great success with. Do you think that's what she's talking about?

I don't know anything about epilepsy, but they are very effective with standard developmental problems caused by ( or showing symptoms of) ASD / ADHD / Dyspraxia and Dyslexia.

Thanks Indigo - where do I go to find out more - is it a paed referral or is it something I can sort out myself?

Will try anything - Ds just doesn't "fit" with any classic dx just seems to pull bits of everything together iyswim - he hates routine change, stims, can't sit still,finds it impossible to concentrate, seems over-bendy, struggles with writing or holding a pencil, looks at you blankly when asked to do something and takes everything you say literally. And don't get me started on the meltdowns.......

On the other hand he is tactile, very loving, makes eye contact, loves rough and tumble with his dad and is a very sociable little boy.

Just want to help him

Get her to put her concerns in writing then the GP for referral to a specialist asap. Gt Ormond st is one of the few places that can diagnose APD but getting a referral acceptance can be almost impossible (DS has been turned down by GOSH 3 times).

Epilepsy medication can also cause neurological side effects, a change in meds may be all that's needed so I'd chase your consultant on that score. SENCO's written note should be copied to the epilepsy guy.

I've sent you a message. :)

Depends whether you want to go private or not. (And where you live)

I don't think much is available on the NHS.

Thanks bochead Have emailed SENCO re her concerns and his paed re his medication and will forward the concerns onto her as well.

whojamaflip

Auditory Processing Disorder (APD) is a listening disability which is about not being able to process all that you hear. There are various subtypes of APD many of which the quack remedial programs are do not begin to address.

APD was only recognised in the UK by the Medical Research Council (MRC) in 2004, and they have been working with the leading UK consultants etc, developing new universal diagnostic tests to replace the old US language based diagnostic tests. While at the same time developing a better research based understanding of APD and developing new technologies as part of their research.

Like many of these issues which have been recently identified, there arer no cures, except possible genetic engineering, so living with APD is about understanding the limitations imposed by the cognitive disability, and understanding the possible cognitive compensating alternative options, and more especially the options each child is able to follow and develop. Unfortunately the so called remedial programs can only suggest a specific type of support, which may not best suite every individual who these types of problems. And most have no real idea or scientific basis as to how their program actually works, and as a result the are not awarer of any damage it could do. APD tends to be a genetic issue so you could try top find the family history of these types of issues. (There used to be and can still be a social stigma regarding this type of disability, and some parents and families sometimes can be in denial with regard to their own issues, which they may have been trying to hide from everyone else all of their lives.)

There will hopefully be an international APD symposium later this year to create an internationally agreed definition of APD, and include the new MRC diagnostic test as part of a new internationally agreed APD diagnostic Gold standard. This will enable UK audiologists to be more open about APD, and provide the professional authority they require.

More UK APD diagnostic centres have emerged in recent months, and this will hopefully increase rapidly after the symposium.