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Old Apr 3rd, 2012, 12:52 PM   #11
Midnight_Fairy
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Hi hun.

Things been manic here. Really struggling with M lately AND I am having doubts about Ruby now. So hard.

So currently battling statement (still) LEA said no, day before tribunal said yes. Assessed him again, then said no and changed AGAIN ON DAY of tribunal. Looks like they just do this very often to weaken parents and drag out the process.

Som have now gone private, got a barrister and she has told me the secrets of the system. I have been advised to cut all contact with NHS CAMHS as they are trying to diagnose my son with things he does not have so they dont have to spend as much.

Right so yesterday saw private OT who was wonderful and written us a wonderful report. We are waiting for our Private assessment and speech and language assessment in London with specialists...costing 1700 its just ridiculous!

So that brings me up to date with school issues. I NEVER EVER thought it would be this hard. I have learnt though that all professionals are in a web- all working with each other unless they are independently funded. I keep my mouth shut now lol.

day 2 of holidays, poor lad had assessments yesterday and today so hopefully he can have a nice break tomorrow xx


 
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Old Apr 3rd, 2012, 13:55 PM   #12
katealim
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Hello ladies. We are in Canada and the girls don't start easter break untill Thursday at noon. Kate has such a hard time adjusting to changes in scheduling so we will see how things go. She is currently in grade 1 with a full time aide and in a mainstream school. My oldest is antsy to get some time off school, especially as the weather is starting to improve up here. I am new here so for those of you wondering...I have 2 girls, my youngest was an undiagnosed breech delivered vaginally and suffers from cerebral palsy. She was also born with a cleft palate. My eldest is perfectly healthy and we are expecting our 3rd; praying that this one will be healthy as well. Nice to meet you all and look forward to chatting with you!


 
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Old Apr 3rd, 2012, 14:04 PM   #13
Marleysgirl
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Quote:
Originally Posted by Tegans Mama View Post
I know my OH is having problems accepting she might need an SN school though.
I think we had our period of denial when A was about a year old and it became apparent that he had a range of issues, that it wasn't simply being a preemie. Since then we've tried to embrace his needs, and if attending a SN school means that he'll get the best support to help him learn, then we're happy to accept the 'SN' label and fight to get him what he needs. It's all about what's best for him, not what our (or anyone else's) feelings might be.

We've received the acknowledgement from our request for Statutory Assessment today. Time to dig out recent paperwork and write a one-page summary on his needs and the support he'd need to attend school alongside his peer group.

This time next year I hope to join in the "what shall we do in the holidays?" discussions


 
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Old Apr 3rd, 2012, 14:35 PM   #14
Tegans Mama
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That sounds like a nightmare MF. I know I wouldn't be able to afford to fund those things, so if we had that much trouble Tegan would be home schooled.

Hi katealim! I'm really hoping we can get this section a bit more busy as it could be such a great resource for us all.


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Old Apr 3rd, 2012, 14:40 PM   #15
Tegans Mama
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Quote:
Originally Posted by Marleysgirl View Post
Quote:
Originally Posted by Tegans Mama View Post
I know my OH is having problems accepting she might need an SN school though.
I think we had our period of denial when A was about a year old and it became apparent that he had a range of issues, that it wasn't simply being a preemie. Since then we've tried to embrace his needs, and if attending a SN school means that he'll get the best support to help him learn, then we're happy to accept the 'SN' label and fight to get him what he needs. It's all about what's best for him, not what our (or anyone else's) feelings might be.

We've received the acknowledgement from our request for Statutory Assessment today. Time to dig out recent paperwork and write a one-page summary on his needs and the support he'd need to attend school alongside his peer group.

This time next year I hope to join in the "what shall we do in the holidays?" discussions
It's not accepting that she has special needs which is the problem really. It would be extremely hard to deny a paraplegic child is disabled She needs pretty much 24 hour care for her physical needs. It's the learning disabilities that have hit us like a tonne of bricks to be honest. We knew from birth it was *possible* she'd have delayed learning/learning disabilities. We just hoped and prayed she wouldn't.
It turns out she does. And that no amount of "help" at home will really help even though I've been working my guts out. You can't teach much in the way of reading to a child with little/no short term memory.

The statementing process is interesting We've just "renewed" Tegans. Glad you got your acknowledgement. Our first statement application was denied because the EP didn't submit ANY supporting evidence even though there was loads


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Old Apr 4th, 2012, 00:32 AM   #16
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Hey, just saw this now. I am in Canada, and we had spring break couple weeks ago. We went on vacation to Vancouver. Makena is progressing well, in school, I think. I say I think, because teachers have not provided one IEP or ANY report cards due to their strike action for a raise. She has been driving me a bi mental with her attitude and constant non stop repeated questions. We are having issues with her therapy, and I am getting royally ticked because they are not providing the services they say they will...which is a long winded story. Generally Makena is happy though.


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Old Apr 4th, 2012, 01:43 AM   #17
Midnight_Fairy
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I cant homeschool not strong enough I need him to at least have a chance at secondary school and if that fails then I will homeschool but I would love him to have a proper chance and he would be fine with right support. They know most people dont have the money (and we dont) thats why its hard to turn down what I ask for as they dont come across it often lol xxx


 
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Old Apr 7th, 2012, 06:17 AM   #18
Peanut78
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Hello!

My son has dysmyelination/ delayed myelination which basically manifests as a motor planning difficluty. He is nursery 08:00 - 12:00 5 days a week and is on hol's this week and next He also has OT and ST every week which he won't over the hol's. I am trying to make sure that he has some structured activities everyday...

We live in Dubai where it is now getting so hot that outdoor activities are becoming a pain (and there is a limit to how much swimming you can do in a day!)



 
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Old Apr 7th, 2012, 06:38 AM   #19
Peanut78
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Quote:
Originally Posted by Marleysgirl View Post
Quote:
Originally Posted by Tegans Mama View Post
I know my OH is having problems accepting she might need an SN school though.
I think we had our period of denial when A was about a year old and it became apparent that he had a range of issues, that it wasn't simply being a preemie. Since then we've tried to embrace his needs, and if attending a SN school means that he'll get the best support to help him learn, then we're happy to accept the 'SN' label and fight to get him what he needs. It's all about what's best for him, not what our (or anyone else's) feelings might be.

We've received the acknowledgement from our request for Statutory Assessment today. Time to dig out recent paperwork and write a one-page summary on his needs and the support he'd need to attend school alongside his peer group.

This time next year I hope to join in the "what shall we do in the holidays?" discussions
Yeah, this can be really tough coming to terms with We recently moved to Dubai whery son is in a regular nursery. Seems to be going ok, although we plan to repeat foundation 1 next year as he is currently one the youngest in the year being a July baby, and I feel given his speech delays he could benefit from not being the youngest in the class and having some more time.

BUT, i was horrified after having a conversation with his nursery teacher who told me that Dubai is a terrible place to be for children like T. When they reach school age no mainstream schools take on children with learning difficulties and the only place he would be able to go was a special needs school/ centre (where children with mild learning difficulties are automatically placed with children with severe learining diffciulties, my sons issues are not cognitive, but pertain to gross and fine motor planning). Basically here in Dubai all the english speaking schools are private and very competitive, each child needs to pass an assessment to enter, and they don't want children with learning difficulties bringing down their average Luckily we will not be in Dubai long enough for this to be an issue. But it made me feel sick to my stomache, I just went back to my car and cried. (sorry that turned into a rant, got me all worked up again typing that )

Now we are looking into options for schools in NY, where they have come alot further in developing learning support within a mainstream setting, or schools that reflect more a mainstream model with specialised services.


 
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Old Apr 16th, 2012, 01:49 AM   #20
Emmea12uk
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http://www.spinabifidasupport.com/nvldsyndrome.htm


 
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