Long road ahead then?

[monkeypie]

Hi everyone, i am kind of new to MN but i was a member 3 yrs ago till DS was born. Never thought i would be posting in this topic but hey who did?

about a year ago i noticed my DS was a bit behind in his speech and interaction with people but was constantly told by friends that i was being too hard on him and to be patient. 8 months passed with hardly any change so i got health visitor involved. Anyway at the min we are waiting for assesment in April to tell us 'What'? I'm not sure but the pead who saw us in Dec said she thinks DS has ASD.
After reading lots and LOTS about ASD i am starting to agree with her, he has many classic signs but i still get alot of response and love from him. We are now seeing speech therapist who says it is more than just speech delay,great! Next appointment with pead is in March, i'm hoping it's to give me dates for assesment to start.

Anyway i guess this is just the start of a very long tunnel and as i am a single mum i am going to need all the help and advice you guys can give me. Also not very up on the jargon so be gentle

Thanks for taking time to read my thread

[needmorecoffee]

There is a genetic condition where a boy has an extra X chromosone so he's XXY, Causes speech delay and some other things.
Jyst chucking that in so they don't automatically assume ASD when it could be something esle.
I have one son with Aspergers syndrome and a daughetr with severe cerebral palsy and epilepsy.

[staryeyed]

Hi Monkeypie, welcome to SN MN.

I have one Ds who is 2.9 and has ASD. He was diagnosed at 2.1.

Its good here; you can learn so much through others that are going through the same things or who have already been there.

We didn't get assessments really just observation and an interview.

if there is any thing you want to ask specifically just go ahead.

[moira199]

Hi My DS was diagnosed ASD about 5 months ago (is 3.10 now) but I knew a long time before that 'things' were not right. It's not an easy road but I have found that at least getting on to the right road - development for an ASD child has been an enormous step forward for me. I don't waste time comparing him to other children now and wondering what is wrong. I am getting help for him now so I am not stuck in the wilderness any more. Also I have seen very significant progress with DS now, he's slow but he is getting there in his own way.

[moira199]

Hi My DS was diagnosed ASD about 5 months ago (is 3.10 now) but I knew a long time before that 'things' were not right. It's not an easy road but I have found that at least getting on to the right road - development for an ASD child has been an enormous step forward for me. I don't waste time comparing him to other children now and wondering what is wrong. I am getting help for him now so I am not stuck in the wilderness any more. Also I have seen very significant progress with DS now, he's slow but he is getting there in his own way.

[Peachy]

Hi and welcome.

It is a long road, but in some ways thats positive as it can give you the time to adjust- with our ds3 we've gone from total denial to acceptabce and we're only just with the dx now.

We ahve 3 boys, ds1, 8, HFA / AS and very aggressive; ds2,7, Mr sociable NT Hhimself lol, and ds3, 4.5, HFA but with a severe speech and language delay so his autism mirrors ASD and so he is more affected than most kids with HFA, if you see what I mean? His IQ is good but he' so locked into his own world at times.

Also baby due next month, another boy!

Welcome to Sn. there are loads of us here with ASD and speech delay experience.

[tibni]

Hi Monkeypie,

I have a ds, 7 this month, with ASD and speech delay.

Being a parent is full of ups and downs - with SEN children this is certainly true. Guess what i'm trying to say that however much you read, even however prepared you try and get - this is a very emotional time. Be kind to yourself and feel free to chat, rant with people who understand.

[mymatemax]

Hi monkeypie,
I have 2 ds's the youngest is 5 & has, CP, GDD & ASD.
His dx has been more of a gradual thing as his brain damage is a result of prematurity so in may ways its been easier as we haven't had to fight for assessments.
I hope you get the answers you need for you & your son & lots of support on mn

[sphil]

Hello Monkeypie
I have two Dses - DS1 (6) who is currently being assessed for dyspraxia and DS2(5) who was diagnosed with ASD two years ago when he was 3.3, after a process which sounds very similar to yours. This site has been the best source of information, advice and support ever. I found out about PECS and ABA on here, which have been instrumental in getting DS2 to speak, and have also had lots of reassurance about DS1's quirky ways! Welcome

[monkeypie]

Thanks so much everyone for making me feel welcome. Just a few questions about your posts,what do this letters stand for?
HFA/AS
NT
CP
GDD
PECS
ABA
DX
sphil you say your process sounds similar to mine, well this assesment we r waiting for is meant to run for 4 weeks,1 day a week. present in a mock nursery enviroment at hospital will be a neurologist,phyciatrist(sorry sbout spelling)pead and speech therapist, plus carers. There will be a few other children too, i'm assuming to see how they all act with each other. Then after the 4 weeks is up they all get together and agree on a diag.
Also i am waiting to hear about early placement in nursery for after easter and was told by first speech therapist(who i did not like at all)we only saw her once as she said my DS was too severe for her to be able to do anything with thanks very much! she also told me i should def not accept early place at nursery. I think she was talking rubbish and am probably going to accept it if offered. Anyone got advice on wether it's a good or bad thing?
I am more than happy to stay with him if needed, i do know there are 2 other boys at this school with ASD.
Thanks for any advice!

[staryeyed]

HFA- High functioning autism- where the child functions fairly well.
AS-Aspergers Syndrome- Autism without the speech delay. Sometimes HFA and AS are classified as the same thing.

NT- neuro-typical- children that develop normally

CP- cerebral palsy

GDD_ Global developmental delay- delayed across all areas.

PECS- a Picture Exchange System that help children (and adults) without speech to communicate.

ABA- Applied Behavioural Analysis- A learning programme that can be done at home or school. Breaking things down into small pieces and reinforcing.

DX- diagnosis.

Speech therapists should be able to help with something whether its PECS or Makaton or play skills.They are not always trained in either. Both Speech therapists we have seen have not been trained in PECS and were very unsuccessful when they tried to teach it. I went on a PECS course and taught it to Ds myself which is what quite a few parents do.

[Peachy]

You have to be careful with the dx though- different professionals work differently.

For example, ds3 has apaprenlty got HFA BUT in no way functions like my ds1 with HFA/ AS; he is far mroe severe, to the extent that he has a notable developmental delay as a result of his autism, and eg. is still doubly incontinent at 4.5.

The oficial catrgories are:

AS- Aspergers- autistic child, no speech issues (although some literal speech - often called semantic pragmatic disorder- can be rpesent), normal level IQ.

HFA- autistic child with sppech issues, can be very severe- normal IQ.

Classic Autism- auttistic child with low IQ, speech issues.

So you may gret a child like ds3 who has a good IQ but is almost impossible to 'access' at times, is on the first percentile for langauge, has absences etc etc- and is inded far more affected than many 'classic autism' kids I and the Paed know. Or ds1 who is verbally very able, bright, mild autistic tendencies- but extremely aggressive due to a complete lack of social skills / empathy. Indeed, despite ds1 being mild I have never met a child so devoid of empathy.

That's why its a spectrum. because many kids have complete disparate presentations, indeed many also have other syndromes running alongside- eg ds1 has dyslexia as well.

Children on the spectrum are hard to 'judge' by their diagnosis- they all differ so much. The only features they have in common is the triad of impairments often.

[monkeypie]

Thanks for that staryeyed,i can make better sense of the threads now!
i know the speech therapist we have now is trained in Makaton as my friend has DD with Downs and she does it with her. Where did you find out about PECS course, how long did it take? Would be very interested in doing that thanks.

[Peachy]

We start PECs today. You can get details of courses from the national autistic society website. we ahd our trainig provided by BIBIC (www.bibic.org.uk), as our SALTs were always changing, ds3 was getting older and the onkly date near us run by Pyramid was close to my due date so a no-no.

[monkeypie]

Peachy, my DS only says one or two words together. He doesn't cry when he's hurt himself but if it's extreme he will come to me for comfort. He repeats what people say to him rather than an answer. He quotes his fav tv prog constantly. He walks on tip toes alot and is very unaware of obstacles and is always bumping/walking into things. He is very heavy to pick up even though he is average weight. He is totally toilet trained and even though he is ok with most changes in life his routine of dinner, bath, pj's is sacred. He learns things very quickly, eg: colours, shapes, numers and letters. Also if he sees you doing something he can do it himself not long after. He loves music and mobile phones have been the undoing of me at times, he's obsessed. Anything with buttons or anything that turns or he can roll. He is very placid and at playgroup even though he does do his own thing most of the time if another child comes and takes his toy he just allows it and goes to find something else to play with. I could go on and on as i'm sure you know. It's all very confusing, one min i am convinced it's ASD an hour later i think Nahhh it can't be. My head is spinning and i can't wait for this assesment to be over, just so i will know a little more, feeling in limbo at min.
My family will do anything for me but they all are at the stage of 'he will grow out of it' especially my dad and bro. So i tend not to talk to them about it, my mum does try to understand but ends up in tears, oh well at least i have found MN!

[monkeypie]

Sorry peachy what does SALT mean?

[Peachy]

Ah monkey I wish you were close by- he sounds so much like my DS3! there's a few of us on here with kids that fit that description (Dinosaur, Sphil for a start) and I can certainly ID with the doubt- my Dh si wella ware of the diagnosis but I do struggle to beleive it at times- then he will run around the rug for an hour and I'm there going oh here we go again......

PECs was certanly recommended for my ds, who is 4.5. He's made some progress in the last year actually, mainly as a result of BIBIC inpt (would seriosuly recommend a look at their website- no dx required!), we were only told his official dx two weeks ago though even though it has been known amongst those who care for him for ages- childminder has a child with AS, school knew, and the simple fact we have another child on the spectrum raised the odds a lot- this baby due soon is at a very high risk of ASD, especiallya s another boy.

[Peachy]

OOps sory- SALT- speech and language therapist

[monkeypie]

Peachy thanks again i just applied for info pack from bibic website about courses. Ok you have all given me things to be able to go look up so thanks everyone, i'm sure i'll have loads more questions soon!

[monkeypie]

Sorry if this seems like a stupid question but does non-verbal mean doesn't talk at all or does it mean saying words but making no sense? Also can anyone tell me a bit more about PDD?

[Peachy]

Non verbal is not talking BUT there are levels of it- and it can vary. DS3 can be fairly verbal with me now, but not with other people for example. So school etc is harder work for them than he is for me. And even what he does say- often its not possible to understand, it sounds like random noise which is why we're using the PECs.

[moira199]

Non verbal means literally not talking. Some ASD children can be verbal or even highly verbal but for the most part non communicative as their speech is echolalia/parrot speech/repetition etc. It can also be scripted speech - saying 'Do you want a biscuit?' to mean 'I want a biscuit' - it is a memorised phrase to get something but without the normal understanding of syntax and semantics. I would agree that there are many positives in what you describe about your DS so if you do end up getting a DX there will be lot that can be done to work with those positive features.

[monkeypie]

Thanks PipinJo and Moira199 for the positvie comments, much appreciated!

[monkeypie]

Peachy where did you get your PECs i have found an American site which is selling a CD-ROM with 10,000 color photo-quality images in 65 categories for £37. Is this good or do you know somewhere else?