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Here some suggested organisations that offer expert advice on SN.

ASD Pre-schoolers Thread

(83 Posts)
StarlightMcKenzie Fri 05-Jun-09 10:22:42

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jeanjeannie Fri 05-Jun-09 11:02:08

Hello,

I think I may qualify to join in. Had first home assesment with paed yesterday who confirmed that my DD1 2.7 is definately "different" possibly asd but now needs monitoring during her one morning a week at nursery and then all meeting back up in 6mths to see where we're at.

Currently I've been offered a course of Hanen - which I know nothing about but feel pleased I'm getting some help and we're awaiting a full assessment with SALT. I've also got a DD 1 yr - who is very different to DD1 and already puts two words together!

I'm not sure what my main concern is....so many to chose fromgrin Current fave concern of the moment is the enourmity of getting DD to communicate. She has loads of words - bright as a button but still can't/won't use commands. So she can tell me there is an ice cream van or an elephant wearing a hat but NO idea how to ask for a drink hmm!

Lovely to meet you and thanks for the thread. I've already learned SO much from lurking. I've an extensive wish-list from Amazon and my acronym awareness is coming on a treat smile

silverfrog Fri 05-Jun-09 11:12:55

Hello smile

my dd is at the top end of this age scale (she is 4, and an August child, so technically still a pre-schooler, although she should ahve gone into Reception last september.)

dd1 was diagnosed at 2.8ish (that was the final report - she had been in the system since she was about 17 months old)

we are still on waiting lists, sadly.

dd1 has had no SALT input (she was assessed 3 times, but was signed off when she turned 3 as she is verbal - never mind the large delay and disordered acquisition that she has! At that point, she could recite one of any number of books & songs, but was unable to tell me she was hungry/thirsty/wanted something, etc.)

she was on a waiting list for a SN pre-school for 18 months, and then by the time the place came up for her (last year, so just as she turned 4, and could have been starting at school) the placement was no longer appropriate, as there was no suitable peer group for her.

we started Statementing in December 2007, so that ti would be in place by the time she started school. We are still waiting for a Statement.

We did get portage for a year, which was very good (although dd1 had issues with her portage worker - not the fault of the portage lady, though, she was fab), but sadly that was withdrawn when we started our ABA programme.

We have now moved areas (as we kept coming up against the same brick walls where we were, and tbh, wasted a good 2 years where we could have been getting help for dd1), and dd1 is at a SN pre-school part time, and we are hopefully about to re-start our ABA

silverfrog Fri 05-Jun-09 11:20:28

oh yes, things that we ahve done that we found have helped enormously:

we did the Sunderland test (checking for gluten/casein issues). dd1 has been gf/cf since just before she was 3, and has improved hugely - much more focussed, lots more language, even more social (she was beofre, but now it is more of a two way thing).

we did the Earlybird's course, which didn't tell us anyhting we didn't know (I am an obsessive reader blush) but it was suh a relief to be in a room with other people who know exactly what you are going through - they may have different problems, but there is no judgement, and total acceptance, whatever your issue is.

having a paed who was onside was a blessed relief too. we saw 4 different paeds with dd1, and only one of them treated us as people who should eb informed about what was going on. building a good relationship is invaluable - again, the relief of knowing that you are being told what the doc is even considering is enormous. takes a lot of the stress out of things.

StarlightMcKenzie Fri 05-Jun-09 11:30:58

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bubblagirl Fri 05-Jun-09 11:51:18

well my ds is only a preschooler until sept

maybe you already know me by now grin

bubblaboy is 4 he has high functioning autism very bright boy he has atypical speech cannot produce alot of speech sounds but has ongoing SALT and is making slow progress

he was dx at 3 but we had been told at 2 he was ASD but was left a yr and half with no help at all even with dx i have learnt to never wait around for them but to always chase up if something is worrying you

i have had to learn about my ds and teach him many things such as asking etc this took a good yr with repeating everything you want more drink etc by 3 he was saying more drink

i verbalised all my actions too weeing to making bed , dinner etc all at 3 words and within weeks his understanding of actions became clearer

i gave him eye q strawberry chews this helped alot with his concentration

my fear is him starting school now , we have had 1 proposed statement and i didnt like it so have written letter back with all i wasn't happy with and they are sending me a re written one in next few days so fingers crossed again they need chasing up

most of my knowledge has come from on here and trial and error with my ds learning when to step back and leave him to it

StarlightMcKenzie Fri 05-Jun-09 14:23:02

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mysonben Fri 05-Jun-09 14:46:04

Hi, my DS is 3.7 y, he attends a mainstream nursery 3 afternoons a week.
He is currently on his second lot of SALT sessions ( we waited 10 months between the sessions ...huge waiting list!)
We saw a paed back in April who gave us a verbal dx of mild ASD, we now have to wait until october for his second paed appointment for a review of his progress and discuss the need to push forward for a formal assessement or not).
We basically are well and truely in the 'is he? isn't he ' stage and we feel totally in limbo! sad

mysonben Fri 05-Jun-09 14:48:18

What 's the Early bird course? How do you get on it? Thanks.

jeanjeannie Fri 05-Jun-09 14:59:45

This is a great idea starlight thanks, as I'm drowning under 'watched threads' and trying to work out where in the system people are and how close our situation mirrors theirs!

The consultant we saw was excellent. My DD1 was prem and while in and out of hospital we heard such good things about her - so i was thrilled when it was actually her and not one of her minions!

She basically said not to expect lots straight away from the NHS! That SALTs were like golddust - always over-stretched, often not able to achieve parents' expectatins and with the right reading material, support and input it's good to give it a go yourself. She also mentioned ABA (? think that's it - not sure what it is yet!) as something to look into and she's coming back to me with info on that.

Good to hear feedback about the eye Q bubblagirl - just bought that - phew, it's pricey [expects BIG results emoticon] I've read a few of your posts in my lurking days and learned loads - thanks! We also now vocalise everything. Was in the car yesterday saying "going UP the hill" - "going round the corner" ...DP then reminded me that'd we'd dropped the kids off and he could see exactly where we were going blush

I can see how writing it all down is a good idea. I think I'll start keeping a book for our appointments and sessions - log it all down. I've already got so much going over in my head and we've only just survived appointment number 1 grin

4nomore Fri 05-Jun-09 15:01:00

Hello, my DS will be four this month and was diagnosed with ASD last November. He's already in the nursery unit of the mainstream school which he will enter full-time (hopefully) in January. I'm fairly happy with the support which we and the school are getting from the autism advisory people but don't get me started on SALT angry (at least in this area). I thought they were rubbish when DS1 had speech difficulties over 15 years ago and apparently they still are.

jeanjeannie Fri 05-Jun-09 15:02:38

Oh - I forgot to say, our paed said (off the record) that she though Early Bird wasn't much good. She prefered Hanen (sp?) Thought Early bird was in theory a good idea but in practise didn't achieve great results.

Ha, and I don't even know what it is hmm

mysonben Fri 05-Jun-09 15:07:57

What's hanen? gosh i just don't know anything ! blush

jeanjeannie Fri 05-Jun-09 15:25:56

Not sure...that's tonight's project...google Hanen!!

notfromaroundhere Fri 05-Jun-09 16:11:26

Hello smile

DS1 is 3.8 and was dx with ASD when he was 3.2. We had been floating around the system since he was 2.

There is no Earlybird course where we are either, they run their own version but it wasn't up to much tbh (although like Silverfrog said it was nice to be in a room with other parents who had been through the system etc).

There is no such thing as Portage in our area. We've had spoardic visits from SALT but we are now at a point where it has been said his language is more or less age appropriate but until I can manage his behaviour there isn't much that can be done.

We saw the Paediatrician this week and he said there is no early intervention programmes available on the NHS etc as nothing has been proved effective. He did say some parents privately fund Sonrise/ABA but that is financially out of the question for us. He has suggested a referral to a TASCC team but I suspect this will be a waste of time. We can go on a HELP behaviour course when DS1 is 5(!)

DS1 has been awarded 1.5hrs support 1:1 per session in his preschool and will have termly visits from a Specialist Teacher but the visits won't kick in until September.

The ASD dx has allowed DS1 to get the 1:1 help at preschool and will strengthen our case to get a Statement (although by no means guarantees getting one) but help with tackling his behaviour is non-existant.

silverfrog Fri 05-Jun-09 16:55:02

The Earlybird is a course designed by the NAS, for parents of pre-school children dx'd ASD.

I hoonestly didn't learn anything new (reading the SN pages here, and archives was much more useful), and a lot of what they said was given an NHS slant.

So, dietary interventions were mentioned, but not given much credence, as the majority of nhs dieticians don't think the sunderland stuff works (and it doesn't always, but I think it's quite siple - try it, and if you don't see any difference, stop again smile)

and even though dh & I were sat there saying that dd1 had improved hugely (and that obv we knew not all children would etc, etc) we were practically dismissed as loons grasping at straws and trying to "cure" dd1 (which we aren't, but she is much happier being gf - less anxious, and less fearful of some things)

notfromaroundhere - there have been studies showing that ABA is effective. shout out for moondog, as she has some relevant info on that. again, nhs paeds will spout the party line, which is to say nothing works, so that they don't have to fund it. but ti si possible to get funding (ususally families would self fund to prove it si worthwhile, but there are facilities to help with this, such as the cauldwell Trust)

jeanjeannie Fri 05-Jun-09 17:27:10

Cheers silverfrog Gosh - my paed was quite insistent that we try dietry stuff as she thought it had benefitted many LOs especially in the area of behaviour/sleep and anxiety. She also mentioned ABA and that she found it very effective. She didn't mention if it was funded - so I suspect it's ££$$!

Marne Fri 05-Jun-09 18:24:06

Only just found this thread, what a great idea.

I have 2 dd's, dd1 (5) has Aspergers (she's not really pre-school but it wasn't long ago she was) and i have dd2 (3) who has ASD/HFA.

I have just finished the early birds cause and found it very helpful, i enjoyed talking to other parents with ASD children (comparing problems), some parts of the course didn't really apply to us (mainly the behaviour problems which at the moment we don't have) but i still found it interesting.

Dd2 is receiving SALT, portage,OT (soon) and music therapy.

I have to say the services here in Dorset are great compared to some areas. Dd2 is still awaiting a dx (should be in the next couple of weeks) but we have been told by each person she has seen that she shows clear signs of ASD/HFA.

lou031205 Fri 05-Jun-09 18:26:07

<<whispers>> It isn't just parents of ASD preschoolers that could benefit from this thread sad

mumny Fri 05-Jun-09 19:53:15

Hello smile

I have been lurking a while, Im not sure if son does have ASD or not, he will turn 4 this month
His pre school assessment report puts his verbal skills at 24 months and social skills at 15 months. In the rest of the catergories he is age appropriate or six months behind apart from numbers and perception where he is above average.
When I read the report it was upsetting, when I spy on him at pre school it is very upsetting to see how different he is,yet his pead tells me he is does not have autism so am waiting until he starts school in Sept to see what they say. He has just been put on school action plus. Im so glad this thread came up, I may have lurked forever. I would also like to thank everyone one this board for the advice and comments it has really helped me.

lingle Fri 05-Jun-09 19:55:46

Oh good point lou031205 and I know Starlight will be delighted to have you on the thread smile. I am always thinking I ought to chat more to the mum of the little girl with another SN (downs in this case) at nursery because a lot of the benefits we get (frequent visits from SALTS and training on visual aids) arise as a result of there being more than one SN child around.....

My son is 3.9 and has receptive language delay +?. He will start school at 5.0 in 2010 as I have deferred entry for a year choosing this as a my preferred "intervention".

notfromaroundhere Fri 05-Jun-09 20:15:20

Thanks Silverfrog I will look into ABA a bit more. From my little understanding of it I think it could work for DS1. We could raise some money but nowhere near the figure quoted on the NAS website...

DS1 has also had an OT assessment, still waiting on the report but I found her verbal advice very useful.

lou031205 how are things with your DD?

silverfrog Fri 05-Jun-09 20:36:02

you can do any amount of ABA, you don't have to do it full time.

the figures quoted will have been for 35-40 hours per week, and are indeed hair raising.

we started a programme last year, and did about 12 hours per week. then we had a break form it (as w emoved house, and have been looking ofr tutors etc) and are about to embark on 15-20 hours per week.

it doesn't have to be the all or nothing that is sometimes quoted.

lou031205 Fri 05-Jun-09 20:55:01

Sorry - bad day led to a bit of self-pity there I feel blush - apologies Starlight, this thread is a great idea. I should have just said "can I join?"

mumny - Welcome smile I think it is frustrating & confusing when you can see elements of ASD traits in your child, but then the paed says it isn't so - I thought that meant that the paed didn't see DD's issues. It turns out he does, but that whilst she has traits that feature in ASD, there are key things that she DOES that pretty much rule it out for diagnosis. Took me a while to get my head around that. Lingle has the opposite experience, I believe? - professionals saying ASD, but knowing that that isn't the answer. I think what we have all come to conclude is that making sure our children get the help they need is paramount, and a diagnosis at this early age isn't always the key to that. So push for the support and get your energies behind that rather than pushing for the diagnosis, unless the lack of diagnosis is the barrier to the help he needs.

Do you have DLA for your DS? The forms are awful, but the money can really help to provide things that will benefit him and you as a family. Also, if he qualifies for Middle or High rate care, then you may be able to claim Carer's Allowance, which will also make life a little easier.

Lingle thanks for the encouragement - today has sucked a bit because I got a letter following our latest consultation, and although I had been verbally told all of the info, and it was a very 'helpful' letter, it was painful to see it all in black and white.

notfromaroundhere As always seems to be the case, we have times when nothing seems to happen, then times when we have a rush of activity.
DDs latest consultation was a landmark one, I feel for us as a family. DD had an MRI scan, and this has shown that she has widespread cortical dysplasia - a congenital abnormality of the folding of the surface of the brain. A relief to know that there is definitely something causing her difficulties and behaviour, but sad to know that it is a permanent structural abnormality, and it isn't going to go away. Ever. No idea as to what that means for the future. We are still waiting for results from a 24 hour EEG (she has epilepsy), but a heart scan has shown that the soft murmur she has is innocent.

Her Consultant has recommended a blue badge (she falls alot and has no sense of danger & is very impulsive/runs away). He also thinks we should be getting higher rate mobility, so need to appeal the decision (she gets high rate care only atm).

OT came out last week, and she will have a handrail fitted on the stairs, and we have been given some great activities to help with sensory issues.

SALT phoned today, and will come and see us on Monday. I need to write down my issues with her language, because I don't feel the SALT is very intuitive, and she fobbed off my concerns re: echolalia, by saying "but it is in context". DD can seem to understand a lot more than she does, unless you take the conversation just slightly out of range, and then you realise that she doesn't have a clue.

Portage have been to preschool after a 8 month wait, and she has been given a visual timetable and a wobble cushion.

She has full 1:1 support at preschool, although she was only funded for 1.5 hours. Preschool couldn't cope with her needs without 1:1 for the remaining 1 hour, so they are providing full 1:1 at their cost whilst we wait for the enhanced funding application to go through.

The consultant's letter today says that whilst he recognises DD1's difficulties with pretend play, and some behaviours that feature in ASD, he feels that she is not moving towards a formal diagnosis of ASD. She is too interactive, able to point, link and gesture etc. However, he also said that in his experience, young people with cortical dysplasia need a statement of SEN regardless of whether they attend mainstream or special education.

Lingle - I know you have declined the dx process, but are you thinking along the statementing lines, or are you hoping that another year will lift your DS clear of the SN/NT borderline?

lou031205 Fri 05-Jun-09 20:59:12

That was long blush

jeanjeannie, I know what you mean about your 1 year old. DD2 is almost 22 months, and in many ways physically is more able than DD1. Also, she is so much more 'natural' in all her interactions - hard to pinpoint unless you see them together, but so obvious once you do.

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