Here some suggested organisations that offer expert advice on SN.

Curve Ball thrown in right before diagnosis-

(25 Posts)
kyz1981 Wed 20-Feb-13 16:31:34

Not sure what to make of this- My Ds 2.9 yrs Old- here are his issues.

Auditory Processing problems.
Motor Planning issues
Underesponsive gag
Restrictive diet
Big Sensory Issues
Rigid.
Loves Routines and very upset when things change even minor things.
Everything has to be on his terms or he screams.
Little receptive language
Expressive language is copied.
Does not gesture to ask for things will get him himself or lead you by the hand to them.
Plays to his own agenda and will not engage in adult led activity's at nursery.
Loads of Stims - mainly visual/lining things up.

Really confused as we have basically told he had ASD and few other issues and were awaiting SALT report- SALT has said that think he is language disordered with sensory issues, word finding difficulties and Autistic traits- she did say he could have asd on top of or in addition to a language disorder, and the one that he is diagnosed with (if any atm ) will be the one that affects him the most- I have no idea what to think anymore - schooling was talked about and she stated he would need to be in an ARP unit but the language based ones require a child to be in mainstream for 50% of the time something that DS could not manage with his sensory issues, she then mentioned there was a good language school in surrey ( we are in bucks) -I have no idea what to think anymore- we keep getting told things - Today she said she observed both typical ASD traits and ones that pointed to language disorder.

I am so confused right now and can't see anyone making a diagnosis until things can be either ruled in or out..I just want some idea over what interventions to use- This SALT wants sign and prompts which limits him to the people he can work with, Early years at nursery have been using Pecs ( well just starting to )- SALT is not sure how she feels about this- (She has only seen my DS twice). I just have no clear answers or interventions to use-I am even attending Earlybird as Pead/OT/Nursery were pretty certain- I just feel so confused.

Who was it that told you this? Private person, NHS person, and what was their profession and expertise?

This SALT wants sign and prompts which limits him to the people he can work with, Early years at nursery have been using Pecs ( well just starting to )- SALT is not sure how she feels about this- (She has only seen my DS twice)'

This doesn't make any sense. What are sigh and prompts? I mean I know what signing is, is that what she means? But what are prompts then?

I doubt nursery have been using PECS btw. More likely they are just using visual supports. PECS is very specific communication development system and can be quite technical and require pretty specific training.

In regards to how your SALT feels about pecs or anything? WTF has it got to do with her feelings?

PlentyOfFreeTime Wed 20-Feb-13 17:21:45

Would definitely not make any decisions based on the views of an NHS SALT.

Would base my decision on private Ed Pysch and private SALT reports as they have no LA / NHS masters to please i.e. to go for the cheapest solution.

moondog Wed 20-Feb-13 17:34:32

Plenty, I think that's a bit unfair.
Moreover, a private person may recommend something that costs £££ and needs a cast of thousands but a.) there is no guarantee recommendations will be followed and b.) school staff have to work with the resources available.
i don't thnik there is one
person in this field who wouldn't like to do more, given more time and resources.

PlentyOfFreeTime Wed 20-Feb-13 18:00:27

Sorry Moondog. Just have an over-healthy disrespect for all things provided by or funded by LA.

But still maintain that OP's decision should not be based on SALT advice alone. In her situation I would be seeking a statement so the multi-disciplinary experts can provide their various assessments.

moondog Wed 20-Feb-13 18:11:20

So have I (heatlhy disrespect that is). grin

It's very hard to give advice without knowing the child and individual circumstances, expertise and opinions of all involved. Quality of provision varies wildly unfortunately.

KYZ, you need to know on what grounds different people are encouraging/discouraging different systems, that's for sure.

kyz1981 Wed 20-Feb-13 18:34:09

He has been seen by private SALT - she suspected ASD along with feeding issues and felt that his copying could be masking some LD. Private SALT is a friend of a Friend who works in an ASD school in London.

He has had OT (private since he was 15 months old).

Specialist SALT is part of his CDC assessment - so OT- had seen him a given diagnosis of Sensory Issues, Low Tone, Auditory Processing Problems and said he is on the spectrum, as has the pead basically who has seen him a few times.

Specialist SALT saw him for the second time today - and was very upfront stating she thought DS had a language disorder, but could also see lots of ASD traits and thought he had word finding difficulties ( she said she would not be able to assess this properly until he was about 6). She wants me to use sign Macaton with him with Visual and physical prompts- she talked about visual timetables and pictures.

PECs has been done on advice of Early years/Ed Psyc who have provided training to the nursery and is still in the early stages so 1 card, two people- this is working well.

It is my concern as his mum that if he expects and uses sign it limits the people who he can use to communicate with, where as pecs - can be explained easily.- and also we really believe his issues with language are ASD based as he has never gestured or anything- just led us to it- or got it himself- but I can see how his lack of understanding of language could/can be a lang disorder .

She did say that she would be more than happy to work with a private SALT as she thinks DS needs weekly input and her workload is so heavy that she can only manage monthly at the moment.

I am just very lost and confused as I can see elements of Lang disorder, but his bigger issues at home and at nursery are his rigidness, and that he plays to his own agenda.

kyz1981 Wed 20-Feb-13 18:38:12

Oh and I have applied for stat assessment, as everyone who has worked with him feels he needs 1-2-1 .

DS has ASD and a language disorder. ASD dx first when pretty non-verbal, but language disorder being offered as a dual dx (not accepted).

It isn't that I don't agree with the language disorder thing, it is more that I don't give a toffee. He has problems. Find out what the problems are, then find out what the solutions are. Then implement the solutions.

Be mindful that solutions need to take some consideration of the fact he has ASDness.

Having said that, highlighting the language disorder stuff means he was accepted by a SALT school, rather than an ASD school, and I think, largely, SALT schools have higher expectations of their kids.

zzzzz Wed 20-Feb-13 18:57:06

I am just very lost and confused as I can see elements of Lang disorder, but his bigger issues at home and at nursery are his rigidness, and that he plays to his own agenda.

This is the most important sentence IMO.

My son is 7 (and language disorder + ?), for us the biggest issue IS language.

I would focus on rigidity and compliance.

You might find ABA suits your family (though it will scorch your pocket), and certainly it will help with compliance and rigidity as I understand. For us private SALT was much better purely because she worked in the local language unit and so was listened to at school and very focused on under 7s. We too were told the ASD/language disorder dx would become clearer as ds hit 7ish.....not so far grin.

Work on the things that limit his life, basic communication, appropriate behaviour, access to clubs and activities.

We did private SALT once a week till 5. Music Therapy once a fourtnight till 4.5. RDA for about a term(ours isn't great). Swimming lessons once a week in term time (ms) till 6. We go bowling and ASDFriendly cinema. Dance classes would have been fab.

Bike riding, beach and trampoline are all very destressing. Going on holiday helps ds enormously....sadly broke for the foreseeable!

Oh yes. Going on holiday gives ds a huge leap in development.

Getting a statement for that would be a good idea........

kyz1981 Wed 20-Feb-13 19:03:01

Thanks that kind of makes sense - I think its because he learns by route, that she feels it may be lang disorder, however once learned by route I.e to say hello at our front door he won't do it at any other front door - unless it is learned with that specific door.

I have been told he will need an ASD unit, but now I am not sure- There is a lang unit here but it requires them to be in mainstream for 50% of the time, something that he won't cope with- there are no other decent Lang schools so would mean moving.

I am happy to move if he has a lang disorder that is the bigger issue but if its an ASD issue the units round here are really good- and I love where I live sad.

zzzzz Wed 20-Feb-13 19:06:47

Does the language unit have a nursery? I would have done almost anything to secure that for ds

Don't focus on what he's 'got', focus on what and who can help.

The ASD provision where I lived was raved about quite a bit but it was totally inappropriate for ds, despite him having ASD.

kyz1981 Wed 20-Feb-13 19:57:39

The Lang Unit does have a nursery attached to the school but is not a lang nursery, but that would not necessarily get you in there if your ds had lang problems same with the ASD units round here- we have looked at ABA and can't afford it at the moment but would use it if we had not other options or his development slowed.

We have private OT and have been going to a special needs CDC Toy session .

Hoping once I get his DLA sorted we can get weekly Private SALT and any other services he needs.

Holidays bring me out in a cold sweat the last one we went on was hell- mainly because DS takes so long to be able to process the change in sensory information, so he just ends up crying a lot- I am hoping once his Lang has improved that we can prepare him more and he is only very little atm.

I agree ZZZZZ that's what we have been doing and I find it really easy to do this when i'm not being assessed and visited by CDC professionals- they just confuse me and drain me - it takes me a few days to process it myself.

My biggest worry is getting the right school that can meet his needs and whilst those are all over the place and people are differing in their views I worry that we would be going down the wrong route.

Are you coming to the training day on Sat?

PlentyOfFreeTime Wed 20-Feb-13 20:02:01

Learning by rote is a common ASD descriptor. So is inability to transfer knowledge behaviour learnt in one situation to another i.e. will only do so to that specific door.

I think they are trying to over-differentiate the dx. If you read Tony Attwood's book he talks about comorbid conditions and suggests that you 'label' or pick the dx that would bring the most help.

So if ASD would mean a sheltered unit where he will not stand out as having a language problem, that's what I would choose. They actuallly do quite a bit of language and communication skills in autistic bases.

zzzzz Wed 20-Feb-13 20:10:28

2.9 is very little, holidays with toddlers are always a bit hit and miss and add sn into the mix and it can get hairy. I have to be honest though, ds has done huge leaps verbally every time we've been. Perhaps the very fact is so different and we have to interact with people at the hotel endlessly helps? I know it sounds like I'm saying, jut go on holiday a lot, but......

Go and see them all. Focus on what you think the issues are. Don't forget to enjoy your ds childhood in between the anxiety and endless appointments. Even families with sn are allowed to have fun.

kyz1981 Wed 20-Feb-13 21:45:51

I would love to come to the training but childcare issues are a problem for me at the moment.

Plenty- That's what I thought.

ZZZZ I will, we could never stay in a hotel with him or get on a plane atm, but would have to be a villa/rental in the UK as a flight/hotel would be to much for him- BUT I am desperate for a holiday so we will try again this yr, probably low key and somewhere like Wales or Cornwall as you can find nice quiet spots.

DS has come on a lot already verbally- even if its copied or learnt speech he is using it in context-(to get his needs met).

We have lots of fun at home but wish we could go out more with DS and he would enjoy it.

Carrie37 Wed 20-Feb-13 21:50:59

Hi Kyz, have you considered any of the listening programs. We did "The listening Program" and Ds came on in leaps and bounds not only in language but in the sensory issues and in processing. I can now reason with him. It made a HUGE difference to us but Like everthing its a try it and see.

Are you making any progress in Speech therapy Ds standarised score on Celf went from 53 to 72 in one year with two cycles of listening therapy.

kyz1981 Wed 20-Feb-13 21:51:20

Oh and I would choose an ASD unit over a special school for him and as his sensory issues would not be dealt with well in mainstream, if he could not cope 50% in mainstream then our only option would be a special school which here they are only LD mixed until senior- This is my concern mainly I think at the moment.

kyz1981 Wed 20-Feb-13 21:57:59

Carrie37 we have been doing the listening program with OT since he was 15 months- at that time it was just having the music near him as they can't wear headphones until they are 2- It helped to calm him, but his need for movement probably meant he did not get the full affect.

The headphones are supposed to give the most benefit - But DS will not wear them- so something we try every session but he refuses.

I am going to try an FM Radio earpiece on him when he is older as this is also supposed to help in a noisy classroom- and if he can tolerate it- an ear defender on the other side to help him filter.

It certainly is trial and error but so far most of the things that have made the biggest impact are tips from this board and my OT.

Carrie37 Wed 20-Feb-13 22:04:47

Kyz we did the listening program in the bath with one parent distracting with boats, sharks dolphins etc etc It was only place we could contain and distract him. You have my sympathies. I found it all very frustrating.

kyz1981 Thu 21-Feb-13 10:31:11

That's not a bad idea I may try that to see if it works any better- we used to do it during mealtimes when he was strapped in to his high chair- he would not tolerate that now :-(.

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