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Auditory Processing Disorder - Anyone? Support/advice appreciated.

(21 Posts)
chegirl Tue 06-Oct-09 22:52:53

Hi. DS2 is 6. We have always been aware of his developmental delay and learning difficulties. Didnt ever think we would get a diagnosis. He suffered early neglect and was exposed to various things in utero. Lots of LD in immediate and extended family too.

A couple of years ago I was told about APD and DS did seem to 'fit'. I was wary because I know how easy it can be to self diagnose IYSWIM. It has taken a while to get to assessment because children have to be 6.

Anyway. We have been going to GOSH for a few full on weeks. I had pretty much convinced myself that I was making a fuss about nothing. I have a tendency to do this (think that I am rather than actually make a fuss about nothing!), probably because I have heard 'Oh hes fine' 'Nothing wrong with him' 'he will be ok' 'he is going to catch up' 'all kids do that' sort of thing most of his life. I often worry that I am being neurotic despite knowing deep down that I am the opposite!

Had a bit of a shock today. Consultant came out at the end of today's tests. I really thought he was going to tell me that we didnt need to come back anymore. But he told me that DS didnt need to come back next week but I did. He wanted to go through everything with me and that DS seemed to have processesing problems.

I am ashamed to say I cried. Not a big sob but I did get a bit upset. I know that there are worse things to have but just feel DS has such a lot to cope with already.

I should be relieved we have something concrete to deal with and I am in a way.

Just fed up with clinics and hospitals etc.

Anyone with experience? I am not holding out much hope but I would be so grateful if anyone out there could help.
Thanks.

Phoenix4725 Wed 07-Oct-09 05:36:34

i know d has problems with retaining information and they do wonder about his auditory Processing , therea few mor eon here with more experiace

he was dx with GDd when younger but itsnow Mld as hes at school as well as having some brain damage and is now accepted he wont catch up

Shells Thu 08-Oct-09 08:59:23

There is a little boy (age 7) in DS's class who has recently been diagnosed with APD and has been given a hearing loop system (not sure what the correct term is) and he is totally changed. It involves the teacher wearing a small microphone and the boy wearing earplugs. I think its quite expensive.

His behaviour (pretty awful before) and his ability to learn (not much good either) have improved vastly and he's so much happier. So there can be good outcomes. I hope there's a nice straightforward option like this for you.

It so hard when you get news like this about your children. Hope you are ok.

claw3 Thu 08-Oct-09 09:55:31

My ds has Auditory Dysfunction, he is basically hyper sensitive to noise, he also has Auditory-Language Dysfunction ie hearing the difference between sounds, talks off topic, cant recall names or events etc. He also has Tactile dysfunction, Vestibular Dysfunction, Proprioceptive Dysfunction, Visual Input Dysfunction, Oral Input Dysfunction, Self-Regulation Dysfunction. He has sensory modulation disorder.

claw3 Thu 08-Oct-09 09:58:08

Would also add that from a very early age, he was thought to have actual hearing problems, but his hearing is fine, its the processing of the information that he has a problem with.

magso Thu 08-Oct-09 13:00:44

Chegirl - ((hugs)) I found hearing the diagnosis (for ds autism) was very emotional even though I exspected it. All the protective emotions kick in don't they? Ds had a difficult start to life also. Hope you are OK.
Ds also has APD (the hearing therapist said it wasn't his ears but the bit in between!) as part of his SPD/Autism, so we use the 6 second rule. That is it takes longer to tune in and process what has been heard so when we say something we wait 6 seconds for it to be 'heard and absorbed' before adding another comment. He usually benefits from a light touch to get him to attention (tune his ears in) as he he not able to switch in and out as easily as the rest of us. You probably do all these things instinctively but others may need to hear them as rules. 1st get attention - speak then pause 6 secs between each instruction.
It sounds like you may be getting information and support from the top people which is brilliant. I do hope they can come up with supportive stratagies ( the important bit!). I will be very interested in any advise you can pass on.

mumgoingcrazy Thu 08-Oct-09 19:15:14

DD2 has SPD. She used to be severely tactile defensive and also had auditory and visual processing problems and her vestibular was really screwed up. She has been on a sensory diet for over a year now, and the technique that sorted out the majority of her auditory and visual processing was the 'Therapeutic Listening Program'. She is a different child and her once delayed development has come on leaps and bounds in the 6 months since the program. She still has some slight issues and are about to do some fine tuning with the TLP but it's the best thing we ever did.

www.vitallinks.net is the site our OT told us to check out.

Should mention that DD2 is only 2 yr.

chegirl Thu 08-Oct-09 20:10:29

Thank you all for your replies.

I understand that sensory issues are common in children with ASD. DS does not have ASD. He is does not have a problem with textures or loud noises either. He does respond to multi sensory tecniques like pressure massage and tactile learning.

It all seems so complicated!

mummgo I have heard about the listening programme but dont know much about it. Some adoptive parents I know (sensory problems v.common in adopted children) have found it too much for their children but others thought it fantastic.

claw the auditory language dysfunction sounds very much like the problems DS has. He drives me mad because he cannot tell the difference between Lily and Billy etc. The words Devon and Heaven cause terrible problems. My family live in Devon and he knows Heaven is where people go when they die so he has got very upset on a few occassions when he has asked where Nanny is!
shells I have seen the loops (I used to work with Deaf adults) and understood they could be used with APD so that is interesting.
magso thanks for the 6 second tip, its sounds just what we need.
Pheonix my DS was dx with GDD when he was a baby too. I am not sure that was correct. Children who have spent time in care are almost automatically dx with it! But there is no doubt DS is behind in lots of things.

mumgoingcrazy Thu 08-Oct-09 20:32:05

There are many different types out there, The Listening program is different to Therapeutic Listening, we were under the watchful eye of our OT who changed our cd's according to how DD2 was reacting. I think a good and well trained OT is the key.

claw3 Fri 09-Oct-09 09:35:27

Chegiril - Oh bless!

I know what you mean, we visit HuckDonalds, not McDonalds! and some words he says with a strange 'accent' 'where' is more like 'w-air', 'here' is 'h-air'. Does your ds see a SALT too?

magso Fri 09-Oct-09 10:22:57

Can I butt in and ask for advise teaching ds to read? He cannot distinguish the sounds so just saying c-a-t rapidly leaves him befuddled. Any ideas out there?
Ds calls icecream- nicecream, lemon - melon but used to mix vowel sounds as well as consonants so we had very odd confusions!

claw3 Fri 09-Oct-09 11:14:07

Magso - We have exactly the same problem, the sounded out of c-a-t and then asking what does it sound like, eerrrmmm house, sweets etc is ds's guess!

Ds relies heavily on picture clues, so we have a picture of a c-a-t and another picture of something else and he chooses which one he thinks it sounds like, im not sure if this is the correct way to do it, but it does help his confidence as he will often say he is stupid and just give up, if his guess isnt right.

So i will be watching any replies with interest.

claw3 Fri 09-Oct-09 14:17:53

Magso - Does your ds know phonics?

I read an interesting article about SN children being very visual learners. The author thought that visual learners, think in pictures, not in language.

Nouns such as cat are supposed to be the easiest to learn because they can form a picture in their mind of the word, once they know what the words means, they can memorise the word.

Even though my ds knows phonics, when c-a-t is sounded out, it means nothing to him.

Every word he can 'read' is from memory. He learned to read 'look' from a flash card with the word 'look' on it and a pair of eyes, iyswim.

chegirl Fri 09-Oct-09 16:52:58

Its so nice to have a bit of discussion going on!

I was at a conference at the weekend (I am a portage worker). One of the speakers was talking about the research done with children who have Downs syndrome. They have found that they learn language with the opposite side of the brain than children without Downs. That is why signing is so helpful and why they are such visual learners.

I am guessing that this has implications for other children with SN?

I beginning to concentrate on reading with DS. I was concerned that he wasnt reading a couple of years ago but this was dismissed by his school. I suspect that they have pretty low expectations of the pupils because even now they are not overly concerned. His TA said 'oh lots of children in his class cant read'. When I said 'how many of them dont have English as a home language?, how many of them come from backgrounds that are 'difficult'' she sort of saw my point.

I suppose its hard for those who dont know us but it irks me that I have to somehow prove that we have worked hard with DS and we do read to him, talk to him and stimulate him, we are both literate and our other children have done very well academically, before they take our concerns seriously. I also know his birth mother very well so know that she has real problems with processing information.

Enough moaning blush

I would recommend signing with your DCs if you dont already. I have used it with all my children and use it a lot at work. It is a great visual prompt/reminder. When I was a TA I used it with the children who struggled with spelling and they loved it.

Its very easy to learn the alphabet and use it when you are doing simple spellings. The children will look at your hands rather than your mouth and this seems to help some.

claw DS used to see a SALT. Unfortunately I found once he started school everything was handed over to education and away from the child development team. It is assumed that they will take over but I have not been very impressed so far. I have had him referred back to the CDT for reviews and I am hoping that the audiology consultant can help get things moving again.

magso Fri 09-Oct-09 19:37:58

Oh thanks! We have used templates to teach letters by tracing (kinetic and visual) but had not thought to sign letters (we sign commands and objects). Do you use makaton or phonic signs? I have found when copieing letters it helps to get him to say each letter as he tries to write it (a task that is extremely hard for him - he is almost 10).
Yes it erks me that everything is put down to ds difficult history (or assuming we do not read/play/stimulate him and assuming it is hopeless) rather than looking at him as a child with potential!

claw3 Fri 09-Oct-09 20:25:13

Yes Chegirl the implication is that SN children use the right side of the brain, so do visual learners and so do left handed people.

I started to learn sign language when ds was little because they thought he had impaired hearing. I can sign some colours and pig!

I also have post it notes stuck to everything around the house in the hope, he will then be able to create a mental picture.

When you think it about it is easy to create a picture for cat, but what picture can you create for c-a-t or the or an!

chegirl Fri 09-Oct-09 21:36:39

I use Makaton/BSL because I have been signing for years and am used to it. I use Makaton a lot at work too.

I really value your tips, thanks.

I work with children with quite significant SN but they are preschool so I am not that experienced with teaching school skills IYSWIM.

I saw a lovely set of alphabet cards at the conference. I wish I had bought them. They had sandpaper letters on large square cards. Much easier than cutting out all those letters myself!

chegirlknowswhereyoulive Tue 13-Oct-09 20:23:08

Went to see consultant for discussion about dx and implications, treatment etc.

DS apparently has quite bad temporal processing problems. This explains a lot. He cannot read, write and is very behind at school. He struggles a lot.

The only treatment is private.

We do not have the money. Both OH and I work part time. OH has MS and I work pt in order to care for him and because of DS's additional needs. A full time job is out of the question. Consequently we are on a v.low income.

I hate to sound like I am moaning because we actually do ok and I dont really notice we are skint anymore. We dont have holidays etc but we dont go without food and clothes and stuff.

But it makes paying for private treatment totally out of our reach. I suppose I have been lucky not to have come up against this problem before. DD's cancer treatment was all available on NHS, OH's treatment for MS is also all available so not had to worry about this sort of thing.

It feels awful not to be able to give DS what he needs. Have no clue where to go from here.

Any ideas?

Thanks.

TotalChaos Wed 14-Oct-09 17:09:58

I think it would be worth you giving BIBIC a call (www.bibic.org.uk), they have had funding to offer kids of SN a thorough assessment at minimal price (not sure if they are still able to offer this, but have a feeling they do have means-tested bursaries). quite a few MNetters have taken their kids there and been impressed. Alternatively go through a professional book catalogue such as Winslow and order one or two books, and try and do the work yourself with him.

(NB my experience is of receptive language delay rather than APD)

chegirlknowswhereyoulive Wed 14-Oct-09 18:00:05

Thanks total I will check that out smile

parentsofdis Wed 14-Oct-09 18:33:50

Ive also come across BIBIC previously and they were talked about in a positive way.

www.parentsofdisabledchildren.co.uk

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