Developmental disorders/learning disabilities/genetic syndromes & more support group

[Boo44]

I love this thread xx

 

[sequeena]

Thurinius it is so hard when you're ill. I've had a rotten cold and now have a cough that keeps me up at night and makes me vomit. My oh works nights so isn't here to help and Thomas sleeps around 6 hours a night. I've had 9 hours broken sleep in 2 days it sucks!!

I love this thread too I'm so glad I started it. Thomas is currently playing with his car mat. His tank keeps falling over and he keeps signing to me that's what's happening. Well he just signs tank I fill in the rest lol

 

[annanouska]

Does he use makaton? Apparently my area uses sign a long I've been o. The course. Tbh I find it too complicated for him there's various handshapes and orientations he really struggles with most signs. P,ushe loves mr tumble whom also uses makaton. Very annoying as sign a long is used in all slt, schools etc here

We can sign, stop, pig and rabbit...the most useful signs ever!!

 

[sequeena]

Yes it's makaton he's quite good. No sentences though just single words. He makes up a lot of signs too.

 

[Reid]

Hi ladies been reading the thread for a few weeks unsure to join or not but I see there are a few here that I can relate to.
So I'll tell you about us
My son's 3 1/2 he is a beautiful fun loving boy who has totally light up my life in ways I could never have imagined.
It was 1st brought to my attention at his 30 month check with hv that he didn't have as much words most other children his age so we were put on the waiting list for salt (this was in January) we were also sent to audiology for some hearing tests. The hearing test didn't flag up anything so audiology referred us to a children's developmental centre. So we had a specialist hv come and visit us at home she done an assessment that confirmed my son was delayed in speech and understanding was pretty much happy with everything else. We have seen the pedestrian to be honest this appointment left me a little disappointed I don't feel she spent much time on my son here but she did suggest he could be on the spectrum.
Fast forward to now he's been in nursery for a few months 2 hours 3 days a week as they are finding it difficult to deal with him. A few weeks ago they had me up there for a meeting with the manager hus key worker his salt came and an educational psychologist. They didn't really tell me anything I didn't already no but they suggested him going to another nursery which really took me by surprise. I don't really know much about the 2 nursery's other than they are more specialist for children with developmental delays and other disabilitys.
so these nursery's will send someone to observe lo in nursery and they then say if they think they are suited to offer him a place if so we have another of these meetings and we go and visit the nursery.
That's where we are right now waiting again lol after a 8 month wait on salt
sorry if I've banged on a bit therw lol xx

 

[sequeena]

Hi Lynne and welcome your LO sounds like mine except that Thomas is globally delayed. Good luck with nursery I bet it was a real shock when they said that. I'm sure they'll be able to help him a bit more in the specialist nursery mainstream nurseries aren't specifically trained for children with delays and such I don't think.

 

[Reid]

Thanx yeah he's not really getting much from nursery at the moment he dose enjoy it but he won't follow instructions like the others and there not really helping much with the potty though he's brilliant in the house will use the potty no problem for 1s and 2s because of his speech delay he doesn't say when he needs he just go's bit at nursery I have to put him in pull ups same as when we go out. They said themselves there just giving him things to keep him happy so he's not learning or growing from it. As far as I'm aware this nursery has had alot of money put into it I'm a little uneasy about it 1 it's been set on fire 3 times 2 it's not in the best of area 3 it's a lot further away from the 1 he's at now (I can see from my window). I guess i won't really no till I've been able to look round it and ask my questions ect.
I remember you and Thomas from a good while back xx

 

[sequeena]

It's worth having a look you don't have to make any decisions.

Are you getting any other help? I'd say Portage but I think they only get involved when there's 2+ areas of delay

I totally get the not following instructions thing Thomas is very gentle and is happy to just get on with his own thing so when I've picked him up other kids will be listening to a story and he'll be playing with trains

 

[Boo44]

Hi Lynne - did nursery give you a reason why they couldn't deal with him? Your son sounds gorgeous and you sound like a fab mum x

 

[Reid]

It's worth having a look you don't have to make any decisions.

Are you getting any other help? I'd say Portage but I think they only get involved when there's 2+ areas of delay

I totally get the not following instructions thing Thomas is very gentle and is happy to just get on with his own thing so when I've picked him up other kids will be listening to a story and he'll be playing with trains

We are getting book bug at home which is good and she's going into nursery to do a few sessions along side his key worker. Shes really seen the improvement in juniors behaviour and listening but she works 1 in 1 with him. only recently started salt she too is going to go into the nursery but she'll just be observing him. He won't see the pedestrian until January xx

 

[Reid]

Hi Lynne - did nursery give you a reason why they couldn't deal with him? Your son sounds gorgeous and you sound like a fab mum x

Aww thanks it's not always easy as I'm sure you all no lol but I will always try my best where juniors concerned.
He's actually ment to get 16 hours a week but we started off with 2 hours 3 times a week and never moved off that. They say he needs a smaller group or more 1 to 1 time and they can't offer that. He's very much on his own agenda they ll sit and have a group story or whatever and he won't sit for any great length of time if he doesn't want to xx

 

[alibaba24]

Hi Lynne - did nursery give you a reason why they couldn't deal with him? Your son sounds gorgeous and you sound like a fab mum x

Aww thanks it's not always easy as I'm sure you all no lol but I will always try my best where juniors concerned.
He's actually ment to get 16 hours a week but we started off with 2 hours 3 times a week and never moved off that. They say he needs a smaller group or more 1 to 1 time and they can't offer that. He's very much on his own agenda they ll sit and have a group story or whatever and he won't sit for any great length of time if he doesn't want to xx

Sounds like a certain little girl of mine

 

[alibaba24]

I think its important to remember stories etc are mind numbing for kids with lanuage . i know I wouldn't want someone reading me a book in French and I imagine that's how it is for my daughter who was significant delay in language . x

 

[annanouska]

I always wondered why he didn't like books too much apart from pop up books or flaps and feely ones.... That must be why!!

I'd go and look at the other nursery to see how's feel but really I can't understand what the issue is with his current one? If he wants to wonder a bit is that a huge issue? My son is like nursery security he just patrols the windows! He tends to play for ages pouring water from one cup to another or sat in the sand pit. He was observed last week in nursery by the salt, OT and play therapist. They saw how he mostly does his own thing but how nursery encourage him to do short bursts as the group then go and have his own time etc.

Surely there is still a ratio of 1-4 or 1-6 depending on age. A small group of 4/6 Ish a d they could be in a quiet area doing an activity?

Also it is such a small time actually in the nursery maybe he needs longer to warm up? I know the first hour my son is just gazing out the window. Monday is worse as he's out the routine a bit. Cold they not do some now and then cards to encourage him?

Sometimes specialist nursery is deff the way forwards but it seems a lot of them give up very quickly xxx

 

[Reid]

I used story's as an example he doesn't like sitting doing the 1 thing for any length of time.
I think that's how I was so shocked because he had made some massive improvements take the 1st week at nursery (he started in august) they were playing outdoors they have a lot of cool things out back including juniors favourite thing water so the 2nd day I went to drop him he went to go straight outside but it wasn't time for free play when they are able to go out and the doors were alarmed junior had a mega melt down cause he couldn't get outside. Over the weeks he's done amazingly well he knows now he can't always get out and the past week with the wind and rain they haven't been out at all and he's been fine but had his moments there words.
With the language barrier I've learnt that you just need to give him his own time to accept and learn things. The nursery work on 1 to 8. A lot of the family were really surprised about the suggestion of another nursery ones who have seen him in his nursery environment but it was actually the educational psychologist thay suggested it the day I went up for the meeting she went in and watched him for a little bit.
Personally now I've had time to think about it and got over the shock I think another nursery could really be the best thing they have access to salt and alot of other resources. They work in smaller groups and he would be with children that were similar with speech delay it's also possible to get 1 to 1 time plus I think they would help engorge him to use the toilet when he's not at home. Where as I've got him from his current nursery and he's wet or pooed .
It's just the nursery being that bit further away but that's my issue it's me that has to try and get used to that. Xx

 

[alibaba24]

I always wondered why he didn't like books too much apart from pop up books or flaps and feely ones.... That must be why!!

I'd go and look at the other nursery to see how's feel but really I can't understand what the issue is with his current one? If he wants to wonder a bit is that a huge issue? My son is like nursery security he just patrols the windows! He tends to play for ages pouring water from one cup to another or sat in the sand pit. He was observed last week in nursery by the salt, OT and play therapist. They saw how he mostly does his own thing but how nursery encourage him to do short bursts as the group then go and have his own time etc.

Surely there is still a ratio of 1-4 or 1-6 depending on age. A small group of 4/6 Ish a d they could be in a quiet area doing an activity?

Also it is such a small time actually in the nursery maybe he needs longer to warm up? I know the first hour my son is just gazing out the window. Monday is worse as he's out the routine a bit. Cold they not do some now and then cards to encourage him?

Sometimes specialist nursery is deff the way forwards but it seems a lot of them give up very quickly xxx

I'm a bit surprised at this too as my daughter was not potty trained when she started she was in pull ups the first week then pants and they helped take her to the toilet until she was independent with it. They have always been very understanding of my daughter who wanders off at storytime etc and although they are pushy to have her observed etc they have never suggested a different pre school to me x

 

[sequeena]

Wow rough day here T is hypersensitive to everything right now

But I got a letter from his disability hv and community nurse talking about continence products. We have an appointment at the end of November. I think they're going to give us free nappies I hope so at least they did say we had to wait until he's 4 last time I saw them.

 

[Reid]

Wow rough day here T is hypersensitive to everything right now

But I got a letter from his disability hv and community nurse talking about continence products. We have an appointment at the end of November. I think they're going to give us free nappies I hope so at least they did say we had to wait until he's 4 last time I saw them.

That would be great it would save you a fortune if you got them free.
They days are always soo hard going hope he settles down soon xx

 

[Thurinius]

Thanx yeah he's not really getting much from nursery at the moment he dose enjoy it but he won't follow instructions like the others and there not really helping much with the potty though he's brilliant in the house will use the potty no problem for 1s and 2s because of his speech delay he doesn't say when he needs he just go's bit at nursery I have to put him in pull ups same as when we go out. They said themselves there just giving him things to keep him happy so he's not learning or growing from it. As far as I'm aware this nursery has had alot of money put into it I'm a little uneasy about it 1 it's been set on fire 3 times 2 it's not in the best of area 3 it's a lot further away from the 1 he's at now (I can see from my window). I guess i won't really no till I've been able to look round it and ask my questions ect.
I remember you and Thomas from a good while back xx

I'm in exactly the same situation except the nursery my son was in were absolutely horrid to me, describing my son as a health and safety hazard. So he's back at playgroup till we find him somewhere
What the SENCO's in our borough have said to us is that though my son is bright and learns he needs one to one adult attention to try things and without that he will just wander about - not unhappily but they feel he wouldn't progress and catch up with the others. I can see this, with one to one help at playgroup he gets really into his arts and crafts etc.

 

[sequeena]

He calmed down by about 3pm thankfully. I've no idea what set him off