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Here some suggested organisations that offer expert advice on SN.

some advice, please!!!

(14 Posts)
loreta Mon 15-Jun-09 19:03:53

First excuse my english, i am not native english speaker (i live in Eastern Europe).

My son is 3.8 years old, and due to his autistic like simptoms i have been seeing doctors for 2y now. Living in a country where we dont have so much resources or specialist in that area, i would appriciate some advice if you could give me.

He did not get a dg of autism or PDD yet.
But some of his beahviors trouble me a lot.
Like:
- he has poor eye contact with other people and his siblings
- he does not respond to his name very often
- he plays alone most of the time, does not respond to cues from other children
- if i let him he could be all alone all day, only asking to go to the bathroom (he does not say he is hungry)
- he likes toys with moving parts that he can handle, he can spend a lot of time with them, also he can listen music from my mobile phone foreever
- if i try to remove the toy he gets very upset
- he speech is delayed, i think he understand a lot, but talks very litlle (very often he repeats what he hears in some situation and uses it without any pourpose)
- does not involve himself in play with other children or is interested in them very much
- have none pretend play or imaginitive play
- but he is not agressive in any way, he is very quiet and will listen if you tell him to do something simple
But we have a very close, and warm relationship, he talks with me more and answers my questions a lot. But with others it is like i have described above(especcially in kindergarten)

Does your children that have PDD dg have the same behaviors like my son? Should i push harder for a more clearer dg, then just speech delay and motor problems. I really dont know what else could it be? And i would like to get a proper therapy for him, couse at this point i am the only one working with him.

Thanks!

BriocheDoree Mon 15-Jun-09 19:25:15

Hi Loreta,
I have a 5-year-old daughter with PDD. She sounds a lot like your son.

- poor eye contact (either all or nothing)
- doesn't always respond to her name
- doesn't play with other children
- didn't say she was hungry or thirsty, but has just started to!
- will get fixed on one toy
- delayed speech, also delayed understanding in her case (in fact speech is most noticeable thing about her)
- only talks to adults and not really to other children (apart from her little brother) and mainly only talks to people we know or to close family
- not aggressive unless other children get too close and she can't make them back off in any other way (because she can't talk well to them)
- pretend play only just developing at age 5
Will also listen if you ask her to do something simple (quite likes to help set the table or help cook dinner). Very loving child and very close to her parents and little brother.
What therapy do you get for him (if at all?) Sounds like he could use speech therapy at least. What work do you do with him at home? I'm sure that there are people on here who could suggest resources that you could use to work with him.

Anyway, welcome to the SN board (BTW I'm not in UK either, but most members here are).

Brio
x

loreta Mon 15-Jun-09 19:43:38

Yes, it sound very simmilar. Because i dont
have the dg of PDD i did not get any therapy
from a specialist. Only twice a month speech therapy.
A therapist who works with autistic children
told me to get books from Greenspan and try
to use some of his principles. So i do most
of floortime wright now, witch i find
helpfull in geting his attention.
I have seen that there is so much out there
but in my country i did not find specialist in floortime. Some other therapist are 5 hours away so i need to gather money to start working with them (they use mostly ABA).
And for his sensory issues we dont have therapist here, it is realy unrecognized as a problem.
I am worried that i am losing precious time because he is not getting proper therapy.

Any advice is really helpfull!!!

lingle Tue 16-Jun-09 23:27:54

bump

BriocheDoree Wed 17-Jun-09 21:44:05

Bumping this back up as I know that there's people out there that can help...

I like floortime. Don't really do it very much with DD as she's at school now. Sounds like you are already doing well because you are working with him and recognising his difficulties. You could always try emailing Stanley Greenspan to see if he knows of any floortime therapists in your country (you can contact him on www.stanleygreenspan.com) Might be worth a try.

We also get no help for sensory issues. DD's are mostly to do with movement (she's very undersensitive to movement) and I have to keep her occupied - mini trampoline, roller skates, rocking horse - anything with regular movement. She puts EVERYTHING in her mouth and everyone just tells me that's typical of kids with PDD, but not what to do about it.

There are some good books for help with speech. A lot of people on here like the Hanen series, but I haven't used them so can't advise, but hopefully someone else can.

lingle Thu 18-Jun-09 08:58:31

Loreta,

You sound like you are doing a great job. Even if you were in London, you would still be doing 90% of the work yourself - don't feel that you aren't providing "proper" therapy.

I would certainly recommend Hanen (www.hanen.org)'s books for your boy.
"It Takes Two to Talk" is focussed on language delays and more or less assumes that your boy wants to talk more, at least to you.
"More than Words" is a thicker, more detailed, book that assumes you are going to have to "woo" him into greater interactivity, first with you, then with his siblings and other trusted people, then with teachers and, hardest of all, with his peers.

They are both expensive but there are distributors worldwide and the Waterstones website has been selling "It takes two" at a more reasonable rate.

I bought "It takes two" this time last year and it is the best money I ever spent.

For his sensory issues it seems that a book called "The out of synch child" is the absolute mumsnet favourite: I've just borrowed it and am looking forward to reading it as my child has language and social communication problems too.

I'm not going to pretend that it wouldn't be better if you lived in Washington DC and had insurance that would cover you to go and see Greenspan. <sighs longingly>. But I really feel that 90%, 95% or even 99% of the work will always be done by you and that sites like these can give you that extra bit of guidance. Hanen is beautifully written and so clear, I think it will help you.

loreta Tue 23-Jun-09 14:13:54

I have been thinking a lot lately about
doing something concrete. I can`t wait no
more. I have been reading other posts, and
saw how much is there that can help my
child.

I will try to sell my house and move back
with my parents. I would like to come
to London or somewhere in UK and do a
good assesment.
I assume i need a range of specialist, from
clinical psychologist and other.And someone
who can make a sensory profile with my son
and tell me what exercises i need to do.
Can i do it in one place?
If you could tell me what specialist are
needed for a good assesment, and how much
it cost aproximatley.I dont even know what
OT means????
I could get cca 20 000 euros for my house.
That sholud be enough. And my friend has a
son in London that i could stay with, so
i have accomodation.

Thanks!!!

loreta Fri 26-Jun-09 13:26:56

nobody is answering my question.

can you give me some advice!!!!!!

mum2fred Fri 26-Jun-09 16:16:06

bump.

not sure if i can offer the right advce as I dont know the system here in london that well.

is your country in the EU? Hopefully someone will correct me if I am wrong, but i think that to be entitled to the services offered by the National Health Service (NHS) in hte UK, you need to have been a resident here for a certain period of time (6months +). I would say that you should look into this first before making any big decisions. And also dont underestimate the value that being near family nad friends is. All our family nad frends do not lve in hte UK (we are from australia) and it is VERY isolating and I wonder what effect this is having on my DS1 (2.5 ASD) - we are seriously consdering moving back to australia to have the support of our families even though i dont think hte system there is as good as it is here.

That being said, im sure you can get private help here in the UK, it just might be very expensive especially in London(no idea how much).

From my understanding of a lot of therapies on offer here (eg like the SPeech and Language Therapy [SALT] )are offered over relatively short periods with massve gaps between repeated therapy. Eg. You might only get SALT once a week for 6 weeks and then have to wait 6 months to get more) The system here does have faults and it seems to be a bit of an uphill battle. I agree with lingle that it seems that a LOT of the therapies would be 90% + on your shoulders, doing what you learn in your own time.

It does sound like you are doing all hte right things already - getting the right books and working with your son using people like Greenspan's methods. And i must applaud you for your devotion to your son - it is inspiring and he is one lucky little boy to have you as his mum.

Perhaps there are some online courses you can take? People mention those from time to time on here, but I cant direct you myself.

Good luck, he sounds like a lovely little boy.

and bump, bump,bump ! i hope someone more informed can offer you more

lingle Fri 26-Jun-09 16:40:19

good point about the EU.

Loreta,
Introducing a second language may not be ideal just now.
Can you tell us what country you're in?

I urge you to get those Hanen books before you do something as drastic as moving house. "More than Words" shows you how to do a sensory profile. For every post you get on here saying "Ooh I really learnt something useful at my appointment today" you get two more saying "that was bloody waste of time".

PeachyTheRiverParrettHarlot Fri 26-Jun-09 16:45:26

If you're looking for advice on the second language find Moondog on here to ask her

If you're thinking about therapy consider BIBIC- in the UK but they ahev many multinational families and though private (a charity)compared to moving etc very cheap. No formal DX but they do really deep work with the child and crucially therapy.

Moving away from family is soemthing ew've had to do for other reasons and ues, don't underestaimate the value of them.

www.bibic.org.uk

PeachyTheRiverParrettHarlot Fri 26-Jun-09 16:46:06

Oh the other thing

Be aware that many British kids don't get anything either.

DS3 has autism and ds1 has AS / HFA and neither gets any NHS input provided.

loreta Fri 26-Jun-09 18:48:51

first of all my country is not in EU yet(i
live in Serbia)

i was not thinking about moving to UK, only
going for a visit to do a complete
assessment by a good clinical psychologist,
seeing also other specialist to get advices
on what to do at this point.
i assume i would need a range of specialist
so i was interested in what i need, and
how much it costs.
and also maybe doing a complete physical exam, to see are there any heavy metals present in his blood.

i am sorry to hear that even in a country
like yours you are not getting a good care.

and i am interested in online courses if
you could reccoment anything.

thanks!!!!!

sickofsocalledexperts Fri 26-Jun-09 18:57:49

I know it is not all that near, but one of my ABA therapists (who was fantastic for my autistic son) has moved to Czech, where she is working as a speech therapist, but with ABA training. She is called Teresa Bobkova. You could see if you could see her? The other thing you could do is buy the VB Mapp book online and start doing the exercises in there. Good luck!

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