3 yr old with severe speech delay and poss ASD/HFA - advice required

[Toppy]

Hello - I am new to these threads but have been reading the archives for about a month now trying to educate myself about what might in store for us. Mumsnet is the best place I have come across in all of my googling for advice on our particular areas of concern. Here is our background and apologies for the lengthiness and incorrect use of acronyms

DS1 is almost 3. About a year ago the HV came to visit us to see my newborn baby but was more concerned with DS who was 20 months at the time. He was not speaking or responding to his name. I suspect she noticed other things too but did not mention them. She referred us for a hearing test and a SALT assessment. He had mild glue ear which cleared twelve weeks later at the next test and we were given 4 parent and child interaction sessions (involving me being videoed playing with DS then feedback on hope to encourage talk from ST). The ST had other concerns and referred us to Chelsea and Westminster Child Dev't unit (he was now 2) who had no concerns other than speech delay - they discharged us and referred us back to the SALT unit. Three months later I did ITTTT course and then a further three months later DS has had 4 sessions of one on one SALT. We have just been asked to leave the latest course of small group therapy - SALT said it 'was not for him' and that he has other issues on top of severe speech delay.

He has now been referred back to the Child Dev't centre. All the professionals who have worked with him have basically said off record (and beaten around the bush and trodden on eggshells) that he has ASD. I have just watched a YouTube video of another little boy with ASD and am in shock at the similarities between his behaviours and those of DS which at the time I thought were rather sweet and a bit of an affectation. I have hard some dark, lonely and very tearful moments this week. I am struggling to accept that he may be given this label. I know it does not change him from the sweet, funny and affectionate little boy he is but I am the wrong side of experience at the moment and am having little panics about all sorts of things along with a strange sort of grief. My additional pressure is that unfortunately my DH does not think I am being pushy enough. He is very old school and thinks we should go privately but I have been assured by the SALT that we need to go NHS to get a Statement and funding for one on one which his nursery (only two mornings a week as finds it stressful) also say he needs.

Although it sounds like we have had lots of attention in the space of a year actually it has been very little and the people he has seen do not seem to communicate with each other. I feel like no-one is in charge. DS has made very little progress despite me fully embracing ITTTT. He has about 5 words which only I understand ('n' is more) and one which is understandable (bubba for bubble). Having been assured back in July that he would have the full Dev't Assesment and diagnosis within the year I have finally found out from a very jobsworth lady at the unit that it will now be January. DH has hit the roof - basically saying I am not doing enough and that he cannot chase himself as he has to work all day whereas I do not (is of the opinion that SAHM = lunches with friends all day !). These conversations where I update him end up in massive rows - well me being slated basically. I have now decided that the time is right to introduce myself to this board. I really need a bit of support and think I am going to have a lot of questions about diagnoses, implications, statementing process etc

My first question is this - is it worth going private AS WELL as being on the NHS waiting list ?
SALT has recommended I try Christopher Place in London or call the Royal College of SALT for a reccomendation but would these SALT places cover ASD diagnoses? (she mentioned HFA which I nothing about).

Basically has anyone gone privately in London as well as NHS - where and was it worth it. Any other advice form anyone who has been in a similar situation ?

Thank you so much for any replies and please go easy on me - am a bit nervous posting on these experienced and tight knit threads and also feeling super fragile about the whole thing whilst knowing I really need to have balls of steel to deal with what is to come.

What a huge amount of invaluable advice - I have so much to research and even more questions now though will try and line up everything in my head before firing too many off.

Could anyone give me a summary of what ABA is in a nutshell as I found this tricky to Google - is it encouraging behaviours by rewards? We are starting the next 4 sessions of NHS SALT on Monday - fast tracked I think after I dissolved into a puddle of tears at being asked not to come back to any further sessions of small group therapy focusing on listening. DS lay in a corner with his legs up the wall whilst I watched through a two way mirror just willing him to sit down on his allocated square of carpet. He was just not interested in the hello song or dressing dolly. ST has told me she is going to work on More than Words. I was a huge fan of ITTTT so have high hopes.

Spur - I am trying to quell my desire to fire off lots and lots of questions to you specifically as the fact that you are presumably located nearby means you have probably cast your net over the same area. I also had a look at some of your other posts (I feel bad writing this as if it is spying though oddly I also posted about my ridiculously hot Neff oven back in Oct last year) and the advice on your threads has also been very relevant to us. Am a little bit scared to put too many details on here as whilst I don't ever worry about revealing my identity (except to DH) I stupidly told my two STs that I found lurking on MN very supportive.
Can you recommend a private therapist, are they local ish to C&W and how did you come across them yourself?
Also how did you initiate contact with Christopher Place ? it is not exactly the nearest place to get to (perhaps we have the same NHS ST who recommended it to me). Did you go along for an assessment and then they suggested the nursery group? I am keen to put in place as much as I can within budget and your comments on CP have stirred my interest.

Also thank you BialystockandBloom for outlining rough figures which rarely get mentioned by anyone either on MN or on organisations websites and I hate having to ask but it is really interesting/depressing info to know.

'ABA is it encouraging behaviours by rewards?'

Sort of. It's more making the learning of new skills rewarding so that the children are highly motivated to learn them.

So, my ds didn't want to ever hold a pencil or draw, but he had an obsession with stars, so we showed him that we could draw stars, so he was desperate to contribute and we got him to start mark-making and we turned them into stars.

Pretty soon, since his motivation was so high, he learnt to draw stars himself. So, this was his favourite activity in the whole world, so we put the pencils and paper out of reach so that for one he would have to problem solve to get, and for the other he would have to verbalise what he wanted with sentences 'i.e. Mummy, can I have a pencil please'.

Then we could extend it further. I can say, 'yes you can, but first put the red box UNDER the table, and the blue box NEXT TO the chair'.

It's done scientifically though and you have goals and measure progress towards them, as well as measuring the level of motivation for certain objects or activities to ensure you can always get the child to WANT to learn the new skill.

Hope that helps a bit.

That helps a lot - crystal clear and a really good account.
Now I understand what the ST meant by saying we should use my new phone as DS's motivator given his obsession with it. Hmm I think not! Ice cream, glittery stickers and bubbles would do the trick though

I don't want to keep saying thank you but posting last night and all of your marvellous responses has been about the best thing to happen to me this year. SN threads are the cosiest on MN. So.....thank you

'Ice cream, glittery stickers and bubbles would do the trick though'

Trouble is, YOU can't decide what will be motivating for him. Often people are at their wits end because they say 'my ds just won't work for rewards', but what they mean is 'my ds doesn't like the things I think he should'.

Not saying you should use your phone, but you use whatever is motivating to the child at the time. It could be being tickled, putting hands in dry pasta, or, my ds current favourite 'doing some adding up' .

Toppy,

I think you can contact me directly via MN if you want to ask specific questions about our experience but not post them. I will look up how to do it.

I do not want to disclose too much personal info either. I forget that all the conversations are public! We still do not have an oven......grrr

I am more of a lurker than a poster really!

I dont have a lot of time to MN these days. I am away this weekend but will be back online next week.

I am happy to share any info that can help.

Hi Toppy,

Just click on 'message poster' to the far right of my name and you can email me directly with as many questions as you want....

Try not to worry too much it sounds like you have the ball rolling already. You have done a great job getting fast tracked already. Its such a stressful time but taking things one step at a time is best.....

Have a good weekend

spur

Just wondering how your appointment went Toppy - think it was today