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

[Thurinius]

Fab news Lynn. So glad your boy got the nursery place

 

[Reid]

Fab news Lynn. So glad your boy got the nursery place

Thanx I'm delighted feels like we're moving in the right direction now xx

 

[alibaba24]

brilliant news you must be relieved x

 

[sequeena]

that's awesome!

 

[Reid]

Yeah its great I'm looking forward to going up there next week and spending some time seeing how things work after such a rotten experience with the 1st nursery xx

 

[RachA]

Yay that's great news Lynne


Esther has been signed off from her out of school speech therapy now. She's still having it in school though.
We've got to write a statement for her as she's got her 6months review for her Statement already. I can't believe it's come round already. It's not easy knowing what to say though as she has improved but does still need full time help at school.

 

[annanouska]

Hi everyone. We've been q bit bonkers so not had to,e for a good catch up. Marcus had a cold with quite q high temp the other week. He went crazy fitting and was rally poorly I took him to his last play therapy Wednesday and he just collapsed on me or had a drop seizure don't rally know. The gp wouldnt see him and walk in ent us us to a and e complete waste. Think it was the tail end of his illness he seems quit fine now.

He seems to be sleeping 12hrs at a night and still napping 1/2 of a day. I'm not trying to brag is that a bit excessive? I'm so used to him not sleeping this seems strange been doing it a few weeks.

We have a consultant today, I'm sort of excited and nervous as I'm hoping to get more answers on the brain blobs but deep down I'm thinking it's going to be a pointless appointment of just meeting him etc. I've nev seen this consultant I think she's the head of paediatric neurology in Manchester childrens she only runs this clinic once a month.

You know what it's like u get all these appointments and think they will be really good and useful and most are just pointless

I had a meeting with nursery too they are applying for TIS1 funding to see if he can get support at nursery but she said she doesn't think he will and doubts he will get a "statement" / what's the new name ehcp or something for school? I can't understand how he will function without one at school time. I, not bothered for nursery it's two days and I do a lot with him at home but I just worry for school

 

[Reid]

annanouska that sounds horrible glad he's better now though.
Hope everything went well at consultant today and you got some answers.
We have to see the pedestrian later this week don't really no what to expect from it another hearing test in march to
On a plus he done really really well his 1st day of nursery last week I spent a couple of hours with him then went into the staff room they didn't come and get me at all just popped in every so often to tell me what he was doing and I was soo proud of him
He let his key worker take him to the toilet and used it sat and eat his lunch with all the other kids and got a play in there soft play room which was next to the staff room so I could hear him giggle away so wed will be his 1st day himself but they took my mobile number and will text me to let me know how he go's which I thought was really good xx

 

[annanouska]

Aw sounds such a nice nursery

I'm so fed up about the appointment. We were last in they were hour twenty behind which I understand but it was so disorganised. She hadn't seen his scan or EEG results and not read his file. I had to repeat everything then she got cross I coildnt remember all details from over two years ago ( specific timescales etc). I've detailed them all befor but by now it's not exactly fresh in my mind. We're there for quota long time but I don't think we gained anything really. We will be referred to a geneticist as apparently the genetics he's running atm are just standard genetics saw all his dots, he has a few but they are quite small. I coildnt get answers why they are there they don't know they want to see if it's a condition that will get worse or not. Then was like well he's doing so well atm. In one braht they were happy with his meds in the next breath they may look at others as and when. Then she seemed to be hinting more at the autism type concerns then said he was babbling nicely in his language etc. it just seemed a jumble I've gained nothing. Know nothing! He sees the usual one in about a month so will prob get clarity then

Sorry for just ranting I nt straight to work after on,y just got in x

 

[Reid]

Oh that's very disappointing and unprofessional in my opinion I mean I know there obviously busy but she could have took 5 mins to read through the file before you went in and yeah hopefully his usual one will give you some answers just annoying you have to wait again for it.
My los 1st day at nursery himself today I'm just on my way to work so OH is getting him ready and putting him on the bus he just text to say he's kicking off my boy ain't a morning person at all lol x

 

[Thurinius]

Wondering your take on this. You'll probably all remember the horrible time my son had at his first nursery. At the time we didn't know he was asd but they picked it up in his first week and bullied me into removing him. I complained and so forth. And had let it go as I'd got nowhere when the equality commission who'd I'd consulted re my ds's treatment, got in touch to see how it was going.
When I told them they said they could write a letter to the school pointing out they were in breach of the equality act but that quite often schools don't reply. I said yeah and thought nothing of it.
Now the equality commission has been back in touch saying the council's legal consul has contacted them.
Do you think it's a negative thing they've got lawyers involved or a positive thing. I can't make it out. The last action by the school was from the governor who claimed all kinds of lies, such as I'd been given many other options other than removing my son from the nursery. And I've never had the written apology they promised me back in September.
I don't know.
Wouldn't it be a dream though if they admitted they'd breached the act and actually said sorry. Think that is a dream though.

 

[Reid]

Wondering your take on this. You'll probably all remember the horrible time my son had at his first nursery. At the time we didn't know he was asd but they picked it up in his first week and bullied me into removing him. I complained and so forth. And had let it go as I'd got nowhere when the equality commission who'd I'd consulted re my ds's treatment, got in touch to see how it was going.
When I told them they said they could write a letter to the school pointing out they were in breach of the equality act but that quite often schools don't reply. I said yeah and thought nothing of it.
Now the equality commission has been back in touch saying the council's legal consul has contacted them.
Do you think it's a negative thing they've got lawyers involved or a positive thing. I can't make it out. The last action by the school was from the governor who claimed all kinds of lies, such as I'd been given many other options other than removing my son from the nursery. And I've never had the written apology they promised me back in September.
I don't know.
Wouldn't it be a dream though if they admitted they'd breached the act and actually said sorry. Think that is a dream though.

Hey 😊 yeah I remember some of your posts about this
I'd say it's a good thing they bloody well lied and we're found out and if there telling lies on this what else are they lying about.
In the end up we 2 had a bad experience with my son's nursery kind of similar to yourself I feel they just wanted him out every session which were only 2 hours 3 times a week so 6 hours when he entitled to 16 hours. They were constantly phoning me to get him after 30 mins asked me not to bring him to Halloween and christmas party's but the final straw came when they phoned me after 10 mins I hadn't even took my jacket off and they completely exsagurated his behaviour and I caught them out they hadn't realised I was waiting at the door so seen what he doing they told me he was throwing chairs about her words he was in fact pulling the back of the chair so it would fall on the floor big difference anyway once they let me in the manager told me I had to stay for every session from now on I wasn't very happy about the whole situation and we were waiting to see if he'd got the place in the new nursery which was 2 weeks away so I decided I was pulling him out and got in touch with the lady who works with the council (don't no her job title) she'd been to the meeting when we were trying to push for this new nursery I wanted to keep myself right with pulling him out so when I told her why she was not in the least bit happy she said they weren't following the procedures they should have been phoning her as she could implement additional support him it was then she told me he had the place so it was ok that I wasn't sending him but she would be going to discuss what I told her with them

So now my little boy has started his new nursery I spent a couple of days there and there fantastic I can't believe the difference in the 2 smaller classes more staff
the nursery bus picked him up at 8:45 amd brought him home at 3:30 they send a wee book home each session to tell me what he's been playing with what's he's eaten when he's went to the toilet.
He has 2 full days just now come august he can have another day or 2 and they don't close for holidays so his routines kept consistent 😊
oh my that's a book I've typed sorry lol xx

 

[Thurinius]

So glad you've got a good nursery now lynn. We have too and the difference is startling. In the old nursery they complained (after three afternoons) that he didn't join in with the songs and actions.
Well yesterday after eight afternoons my son was taking part in Chinese dance! His teacher always has a nice word and tells me he's been good and joining in with this or that. He's already earned himself two stickers for being helpful. And I just feel so much happier dropping him off because I know they care about him and will look after him.
And actually at the new nursery the ratio of teacher child is the same as the old, they just give a d*mn for his safety etc!

Talking it over with my OH I see the lawyering up as a good thing. Because now its no longer an internal school matter they've had to go to the council for advice so it's flagged up their treatment of special needs pupils. Even if they deny everything it puts them under a spotlight and means they are going to be extra careful how they treat send children in future. So I'm hoping I've maybe made a difference to some children by pushing this.
Though I keep saying I'd let it go I just can't let go this one thing:
That nursery teacher spotted a child who needed extra help, who clearly was autistic or with developmental needs. Rather than examining what help he would need, rather than assisting him in settling in. She decided that he was a nuisance and should leave.
That is unacceptable in this day and age. Especially like you say Lynn, there are so many good people with long titles at county level there to assist you and we've had so much help at that level.

 

[Reid]

Sounds just exactly the same as us and with the way things are now being dealt with they sound like they weren't following procedures and you have stopped this happening to other kids. Aww doesn't it make a massive difference when you no your child's happy and getting the care and attention they deserve. He had a fantastic 1st day said he was playing with the sand for outdoors in the soft play ext really lovely getting the wee . report book home each time to with what's he's done I actually no what hrs doing at nursery now
At the pedestrian today they put him forward to see if he dose have autism which I was expecting
In the 6 months since his last appointment he's came on so much with his general behaviour and toilet trained to which I thought would have been impossible he's an absolute super star 🌟🌟 xx

 

[sequeena]

that is a good thing about the lawyers hopefully everything they lied about will come out I think it's disgusting how your lo was treated.

Lynne that's wonderful news I'm so pleased he's doing well good luck with the testing xx

Thomas had his last speech therapy today he only got 4 sessions Instead of 5. We had a tiny break through though he said kay whilst holding a piece of cake

I'm at my aunts now babysitting my cousins 5 year old whilst she takes her 2 year old to the doctor. Thomas loves his cousin and hasn't left him alone he keeps laying on him or stroking his hair or trying to get his face as Close to his etc bless my.cousin he's very tolerant of Thomas' spd

 

[Reid]

that is a good thing about the lawyers hopefully everything they lied about will come out I think it's disgusting how your lo was treated.

Lynne that's wonderful news I'm so pleased he's doing well good luck with the testing xx

Thomas had his last speech therapy today he only got 4 sessions Instead of 5. We had a tiny break through though he said kay whilst holding a piece of cake

I'm at my aunts now babysitting my cousins 5 year old whilst she takes her 2 year old to the doctor. Thomas loves his cousin and hasn't left him alone he keeps laying on him or stroking his hair or trying to get his face as Close to his etc bless my.cousin he's very tolerant of Thomas' spd

Thanx xx

And well done Thomas my son's very behind with his speech so I no how massive a new word is 😆xx

 

[annanouska]

We have a ne word and action and it's driving me mad!! Hubby and little one wqtching Sesame Street...now he says "cookie" in this weird low deep monster tone said more like "cooookey" whilst cramming food of any description into his mouth some eats toast then exclaims "cooooookey"'and Rams it in like the Cookie Monster

 

[Reid]

We have a ne word and action and it's driving me mad!! Hubby and little one wqtching Sesame Street...now he says "cookie" in this weird low deep monster tone said more like "cooookey" whilst cramming food of any description into his mouth some eats toast then exclaims "cooooookey"'and Rams it in like the Cookie Monster

I shouldn't but that made me lol wee cutie x

 

[sequeena]

Ladies it's been a long time how are things?

We're still no closer to getting T a statement though it has gone to panel.

Everything else is the same though.

 

[bumpin2012]

we're still in Limbo.

Autism assessment in Aug/September. Awaiting psychology appointment and developmental followup.

Genetic screening was all clear. Doing well with daycare, but still little progress with speech development. He's getting tubes placed in his ears in 2 weeks (finally)

Hopefully T gets his statement status addressed soon Sequeena