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

[Thurinius]

That's great lynne1983.
My son used to always run off at playgroup when anyone started singing - quite rude
Anytime I start singing now he tells me very crossly 'no sing'
I don't think,he likes lots of noise... Or my singing.

 

[mummy3]

Ouch sequeena! Hope you're able to rest up your ankle HMS/EDS of any form can hurt alot

Getting rid of the dummy and sleep clinics are brilliant ideas! We haven't used a dummy but sleep can be hard.

RachA, bendy would fit hypermobile, there's a lot to deal with though so one thing at a time. Love her pic!!!! Its very clear. I hear you though

2 years?! Why so long feathers? What is involved in Noonans? Its always hard to get any dx, but its positive to have an answer and then to get a plan My neighbor has identical twin boys with Williams syndrome, they're 10 now and great friends with my bigger boy.

Thurinius, does he do the whole hands over ears when he doesn't want to listen or things are too loud? I cant help laughing when my kids do that!! Same when we're in the car anywhere and at least 2 of them spend the journey hands over ears and humming

Ruaridh, my 6 year old had the last step for his electric wheelchair yesterday, he had to get measured and then we had to look through and decide model and colour (red with requested yellow lightening painted on lol). It was the assistive devices specialist from the durable medical equipment part of our insurance that came not a PT. He was really helpful with Alasdhair too, recommended a gait trainer and gave us the name of the right orthopedist to get in with, we go next month 2 positive progress reports from my ASD kids too, so great day!!! Then today I have 2 off school with flu/virus, cant win with kids huh?!

Hope everyone is well

 

[Feathers]

2 years?! Why so long feathers? What is involved in Noonans? Its always hard to get any dx, but its positive to have an answer and then to get a plan My neighbor has identical twin boys with Williams syndrome, they're 10 now and great friends with my bigger boy.

We're part of the DDD project so they are mapping out all of mine, OHs and DDs DNA. It will show up every/any genetic issue not just one specific test for one. It takes so long because it's so complex to do I think. They did offer us more specific DNA tests but given Noonans only shows positive for those in 50% of cases we decided it wasn't worth the extra trauma for DD.

Noonans has a few key features, heart abnormalities (DD is going for a scan to check), feeding problems, certain facial characteristics such as ptosis of the eyes, hypermobility, bleeding/clotting issues, lymphodema, speech and hearing issues, delayed development, behaviour and intelligence issues. I could go into more detail but that's the general overview.

It is better to know I think and many people with Noonans live a normal life so the prognosis isn't terrible in the long term, although it's a spectrum disorder so there are no certainties.

Sorry to hear about your flu issues, sick children in the house is awful! Hopefully they'll feel better soon.

 

[Thurinius]

Good and bad week. The good, I have found a nice nursery for my son. The staff seem really nice, fully clued up (they can all do Makaton signing) and even if we don't get the exceptional needs funding for 1-1 I feel sure the staff there won't ignore him but make sure he is actively engaged.
The medium, Christmas not a good time for my sound sensitive lad. Apparently he got very upset at playgroup as they were practising singing jingle bells - he tried to collect up all the bells to put them away!
The bad. Some of you will be aware of the awful experience I had with my son's old nursery. In his first week they called me to say they were concerned about his behaviour being different to the other kids. Then spent 3 hours bullying me into withdrawing him. After reading their sen policy I could see what they should have done so I complained to the governors.
All I asked for was an explanation as to why given his playgroup had told them of his needs nothing was in place for him, why when it became clear he had issues why they didn't enact their own sen policy which was all about making adjustments to include him. I also asked for an admission he was failed and I wanted assurances it wouldn't happen to anyone else.

Well I got the letter. The governor says she talked to the staff and is happy that a number of options were out to me and that it was entirely my decision to take him out. And also,that they received no information on his needs from playgroup.
I am so shocked by this. Because both counts are utterly untrue, I was at no point given any options bar taking him out. I was so sad that all this was happening in his first week I practically begged the teacher to let him have longer to settle in and she just said 'nursery is not the right place for him'
And playgroup DID tell them, they had two face to face meetings. Feel awful that their professionalism has been called into question when they have down so much for me and my son.
I just cannot believe that they are lying like this!

 

[Reid]

Oh my that's shocking it's like getting let down all over again. Could you ask someone at the playgroup if they kept any paperwork on the meeting with the nursery or ask them to put it in writing and send it on to the governor I'd be fuming could you get a face to face meeting with the governor? If not see if you can put in a complaint above that.
Anyway onto the good news that's fantastic you've found a good nursery for your son and sound likes he'll have a much better time at this nursery.
I'm sort of similar my son is in main stream nursery at the moment but due to his speech delay they find it hard and deem him to need more 1 to 1 support so in Tuesday there's another nursery coming out to observe him and see if he might do better with them in no they have speech therapists on site each day staff are better trained ect so just waiting to see what happens on Tuesday xx

 

[Thurinius]

lynn the playgroup are fuming because they think their professionalism is being called into question. They have been lovely to us, they have filled in form after form and now are doing all the things that need doing for his exceptional needs funding. It is just not credible that they wouldn't have mentioned it in their meetings with the nursery. They have told me they did.
I think what I might do is go in and talk to the head and say that this is the last chance for them to fess up and apologise etc because I have caught them lying and I can prove that they have lied.

I just don't get it. Where i work if you muck up, you fess up and yes its not nice but the emphasis is always on what we can learn from failure for the next time. If the transition period between playgroup and nursery involves hearing about so many children on one day they zone out and don't catch all the info: then say so for gods sake and they can change that.

Upsetting re you lo's nursery. I hate change (not as much as my son but I don't like it) I hate the fact in this county we have stupid first, middle and upper schools so my ds will have to go to three different schools. Stupid.
I hope you find a good fit for him. Maybe its good that your nursery is being up front that they cant give him the help he needs. Otherwise they might have tried but not been up to it and he would have ultimately suffered for it. If you find a better fit with a different nursery then he is being given all the right opportunities to flourish.

 

[Reid]

It's actually down to the educational psychologist this possible nursery move I must admit I was really taking back when it was 1st brought up I just didn't expect it other than speech delay my son doesn't have any diagnosis. Now I've had some time to think over things and know now what his other nursery can offer I'm really hoping they can offer him a space the only thing I feel uneasy about is the fact it's a bit further away his current nursery I can see from the kitchen this new 1 would be 20 mins or so on a bus or taxi which would be provided free to him he'd be with a member of staff all the time but well because I haven't met them or seen the nursery it's still unknown. You'll need to keep me up dated on how your little man gets on in his new nursery xx

 

[annanouska]

to be honest is say forget it. Right now you have a lot of battles on your hands and this doesn't look like one u will win solid focus on ur son the assessments and moving forwards

I feel so lucky about our mainstream nursery, my sons needs aren't hugely apparent tho. He eats weird things, is OCD with routine and hates change but they have incorporated this to help him s added grou thins etc to his routine.

I wold get some ear defenders if noise is too much,my son now loves woodwork with daddy when before he would meltdown even if dad was I. She'd and he was I doors. We have the edz kids ones x

 

[Thurinius]

to be honest is say forget it. Right now you have a lot of battles on your hands and this doesn't look like one u will win solid focus on ur son the assessments and moving forwards x

I can't do that. I really can't because despite the upset and the stress this is causing me there is a point here that I need to make for every other parent with a sen child.
I simply cannot allow them to get away with this bullying behaviour.

They have all these policies and procedures that aren't worth the paper they are written on. And I won't let them so casually lie and besmirch the reputation of the frankly fabulous playgroup.

I have heard that they have not been particularly nice to the sen kids still in their care, so I am pursuing it for them and all that will follow.

Steps off soap box

 

[Reid]

Some good news and some bad news today for us.
We had the manager from the more specialist nursery come and observe my ds today to see if they think the nursery could fit his needs good news is they do and they think he would get on great BUT now the bad it's full ni spaces at all gutted and it could be august before he can get a place. The manager is going to speak with he relevant 1s to see if they can move it on a bit.
My question is is there anything I can do anyone I can phone to push it on in anyway at all? I was going to call the educational psychologist who had this nursery come out in the 1st place and his salt bit other than that who else can I go to? I'm in Scotland btw xx

 

[sequeena]

Sorry I'm not around ladies. Bit up and down here. Busy with his statement. Hugs for everyone

Thurinius any updates about nursery?

Lynne I really don't know what to suggest could he go elsewhere?

 

[Reid]

Sorry I'm not around ladies. Bit up and down here. Busy with his statement. Hugs for everyone

Thurinius any updates about nursery?

Lynne I really don't know what to suggest could he go elsewhere?

Nope other than staying where he is until August guess I'll just need to wait till the meeting a called for us all to get together to see if they can come up with anything I'm guessing it will probably be after Christmas now x

How are you getting on with the new routine Xx

 

[Thurinius]

Thurinius any updates about nursery?

ehere?

Have a conclusion of sorts with horrible nursery. I told the playgroup leader what the governor had said, that the staff claimed to be given no info on my son re one brief line on his language delay.
She came back to me and said she felt that it was down to her to meet with the nursery teacher, the Headteacher SENCO and county inclusion officer to meet and hash out what went wrong.

Obviously I'm pretty upset and angry still and frankly would like everyone involved sacked or flogged or something. But taking a step back and thinking on what I wanted to achieve by complaining: I wanted to ensure it didn't happen to any other child and that they weren't allowed to get away with forcing my son out merely because he has educational needs.
So I think this meeting will achieve that. They will get a ticking off by the county inclusion officer, be shamed in front of their head and SENCO and the playgroup get to prove that they did everything right.
So I'm letting it lie.

The playgroup leader has ensured me that it's not the end of the matter for her and I feel confident that she will hold them to account. Though an apology might be nice still.

It's a relief to let it go to be honest. Now I can concentrate on preparing my son for his new nursery, and I have a couple of amazing things happening in 2015. So I'm feeling quite positive about it all.

Lynn so sorry to hear about the nursery, does he definitely have to leave his current one? I suppose you could attend lots of toddler groups to keep his socialisation going. It's very had, don't know what to suggest.
Hugs to all

 

[RachA]

Thurinius-glad there's been a conclusion of sorts.

Lynn-I assume that you'll have to wait for the place to come up in august as I don't think they'd be any way they could take him if they are full, no matter how hard you push. I would suggest seeing what help can be put into place at his current nursery-they must be able to employ someone with special needs experience or else someone willing to learn.

 

[Reid]

Thurinius-glad there's been a conclusion of sorts.

Lynn-I assume that you'll have to wait for the place to come up in august as I don't think they'd be any way they could take him if they are full, no matter how hard you push. I would suggest seeing what help can be put into place at his current nursery-they must be able to employ someone with special needs experience or else someone willing to learn.

This is what I said to them if they could get him a key worker with specialist training on speech delay they said if that happens which they doubt they would put that member of staff into the new nursery as they have more resources in there plus they could possibly take another 1 or 2 children with similar issues there 2. It is looking like we're going to have to wait till August but this specialist nursery is going to send someone out to put a programme in place for his current key worker to work on so I mean that's better than nothing just feel so deflected by it they totally hyped up this nursery it's fantastic staff and resources had them àll out to see him think hed do great there but can't offer him a place so why he big song and dance hey ho just got to make the most of the situation were in and I'll have some questions ready for the meeting when they all come together xx

 

[annanouska]

not much going on here. We had the team review. He deff has language disorder alongside his epilepsy and a lot of sad features butntheyndont want to diagnose autism just yet. I feel very frustrated as he's just in this limbo with ability he's not as poorly and behind as so,e but not the same as others. His consultant was absent poorly so just slt hv play worker and me so maybe would have been diff. Our appointment for his brain scan is now feb. it sucks being told he has abnormal white matter patches we don't kno what it is but we will run bloods for horrible things and make u wait 3 months. Grrrrrr

 

[RachA]

Thurinius-glad there's been a conclusion of sorts.

Lynn-I assume that you'll have to wait for the place to come up in august as I don't think they'd be any way they could take him if they are full, no matter how hard you push. I would suggest seeing what help can be put into place at his current nursery-they must be able to employ someone with special needs experience or else someone willing to learn.

This is what I said to them if they could get him a key worker with specialist training on speech delay they said if that happens which they doubt they would put that member of staff into the new nursery as they have more resources in there plus they could possibly take another 1 or 2 children with similar issues there 2. It is looking like we're going to have to wait till August but this specialist nursery is going to send someone out to put a programme in place for his current key worker to work on so I mean that's better than nothing just feel so deflected by it they totally hyped up this nursery it's fantastic staff and resources had them àll out to see him think hed do great there but can't offer him a place so why he big song and dance hey ho just got to make the most of the situation were in and I'll have some questions ready for the meeting when they all come together xx

If they can put a program together that his key worker can put in to place then you don't necessarily need a key worker with special needs experience. Esther's key worker had no experience but was amazing with her and took it on herself to learn signing etc to help Esther and a couple if other children at the preschool.


You must feel very frustrated Anna-good you get some answers soon.

 

[Reid]

Thurinius-glad there's been a conclusion of sorts.

Lynn-I assume that you'll have to wait for the place to come up in august as I don't think they'd be any way they could take him if they are full, no matter how hard you push. I would suggest seeing what help can be put into place at his current nursery-they must be able to employ someone with special needs experience or else someone willing to learn.

This is what I said to them if they could get him a key worker with specialist training on speech delay they said if that happens which they doubt they would put that member of staff into the new nursery as they have more resources in there plus they could possibly take another 1 or 2 children with similar issues there 2. It is looking like we're going to have to wait till August but this specialist nursery is going to send someone out to put a programme in place for his current key worker to work on so I mean that's better than nothing just feel so deflected by it they totally hyped up this nursery it's fantastic staff and resources had them àll out to see him think hed do great there but can't offer him a place so why he big song and dance hey ho just got to make the most of the situation were in and I'll have some questions ready for the meeting when they all come together xx

If they can put a program together that his key worker can put in to place then you don't necessarily need a key worker with special needs experience. Esther's key worker had no experience but was amazing with her and took it on herself to learn signing etc to help Esther and a couple if other children at the preschool.


You must feel very frustrated Anna-good you get some answers soon.

Yeah the thing is the nursery he's at just can't give him what he needs which is more 1 to 1 time he's only getting 6 hours a week and alot of the time they phone me to go and pick him up he is ment to get 16 hours. His key worker dose the best she can but she has others In the group she has to care for xx

 

[RachA]

Would they let you do the 16 hours over 5 days (if you wanted this) do that it doesn't get to the point where they need you to pick him up? It's not fair on you to have to pick him up early from each session. Or else just cut his hours down for now. I know that's a bit like a backward step but maybe he'd be better with less scheduled time at the preschool.

 

[Reid]

I don't think so they don't really want to take him more than 2 hours at a time they would possibly add another 2 hour session maybe something I can bring up at the next meeting which I think will be after new year but they all attend the meeting salt educational psychologist ect.
When I went to pick him up yesterday I knew they had a christmas jumper day on fri then a party the following fri (they asked me 2 days before the Halloween party not to take him) so I was ready for them saying about it his key worker asked did Marie (manager) speak to you about fri and next? I said no but I no its your jumper day and party so I'll talk to her on my way out obviously didn't want me to send him. So I said to the manager on the way out what his key worker said she asked if I was coming I said I can't I'm working all day but I want junior to come as normal I want him to at least be giving the chance to see if he likes it his papa will be at home if you really need to phone for him to pick him up she didn't look all that pleased lol but I don't give a shit it's not fair when he's being asked not to go to all the fun days when they haven't let him see for himself if he likes it. Xx