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

[annanouska]

He's in nursery I'm having to take holiday to go so I'm leaving him there!

Don't stress about tonight, have a chat with OH and explain he needs to read the sleep stuff and start again together tomorrow if need be.

Did they make Thomas a little book like Marcus has? It has all pictured symbols as visual aids forth routine, it may help it may not.

As for the eating is it just the evening meal? If he eats enough during the day maybe just relax a little, could he have formula once a day or pediasure if his diet is terrible all the time? I think unsaid u have seen a dietician?

Whatever u do don't give him a fruit cooler from costa...I did and he's gone hyper beyond all belief.

Hope u get the EEG sorted that's terrible off paed.

 

[sequeena]

No the paperwork stuff was just for parents. Nothing for the kids.

Eating wise he will eat breakfast but the rest of the day is really hit and miss. I try not to stress but he will inevitably want something at like 11pm which really isn't suitable. Of course I feed him but he has to eat in the day rather than in the night.

Oh dear! No Thomas has never had anything like that the most exciting it gets for him is a fruit shoot

 

[sequeena]

I just rang Sean they won't be home until 7pm

 

[annanouska]

He usually gets steamed milk there but it was so loud we too out as he wold have a breakdown and me too prob. I'd try a little book Marcus is basic with pec like pictures of the routine and its jut laminated and clipped together but its nice and works, shows little things like 5 mins playing diggers then light out. He doesn't get time either but the order helps.

I'm guessing you have tried not feeding him of a night or reducing the amou t to try and re set his clock. Poor Thomas he sounds all of a jumble. I've sent Marcus to bed no dinner often but he doesn't wake for it in the night. Is hard when u have an additional needs child who doesn't even fit the mould for different isn't it I get frustrated that Marcus doesn't quite fit in boxes as it makes it so wooly explaining x

 

[sequeena]

I've never thought to ask for milk for Thomas in costa - I bet he'd love the experience!

Yeah he really has no concept of routines and it is so hard to get him into one because he needs things when he needs them. I have sent him to bed without food but the resulting meltdown has left both me and him with injuries so I really can't push these things. I feel people think I'm giving into him and he knows what he's doing but there's no way he would hurt himself the way he does if he was trying it on

I so agree SEN kids do not fit into boxes. The HV and nurse said when it comes to sleep put their diagnosis and SEN aside treat them like normal children - are they for real?

 

[annanouska]

errr....right ok. That's the most stupid thing vie heard in a while. It's actually so ridiculous its funny if you could treat them the same u wouldn't all be wasting a day at a sleep clinic.

Ultimately u know your son best, how he reads on paper is very different to the reality. It must be so distressing for him as he must be exhausted and all jumbled up,body clock wise its non wonder he melts down i know its then just as hard to try and watch and fix things

U can ask for cold milk, steamed milk or a plain baby chino which isa bit of steamed milk and lots of frothy stuff on top. Marcus loves them especially with marshmallows too....he really has a marshmallow thing!

Hope everyone's well. X

 

[Reid]

OMG the next person that says to me
oh once he starts talking you'll wish he'd shut up
I will actually punch
why do people say such stupid things
My son's 3 1/2 with speech delay

 

[Thurinius]

OMG the next person that says to me
oh once he starts talking you'll wish he'd shut up
I will actually punch
why do people say such stupid things
My son's 3 1/2 with speech delay

Oh yes I know that one!

 

[mummy3]

Can I join back in? Been so so long and I think I fit in here!

Quick run down.

Freja: 10, ADD, EDS1
Ruaridh: 6,mod/sev ASD, EDS1
Anja: 5, EDS1
Eilidh: 3, mod/sev ASD, GDD, EDS1, Complex partial epilepsy
Alasdhair: 16m,GDD, Diplegic CP, EDS1, Eosinophilic esophagitis

Phew!!! I think I remembered all that

 

[mummy3]

Ooh that saying really gets to me too! I don't know what goes through peoples heads sometimes, esp when they know there's a speech delay!!

 

[mummy3]

I see a few posts about EEGs and MRIs.

We are doing sleep deprived EEGs for now but I really want the longer 24 hour one done. The anti seizure meds are having a really good effect

My little guy is going for his MRI on the 21st finally, its under general and he's supposed to be fasting but its at 12pm We know he has some fluid around his brain, and head is on the 98%+ (height 0.78 and weight 60). My 3 year old had an MRI a couple years ago and the main finding then was delayed myelination, she's due a repeat soon.

 

[Reid]

Can I join back in? Been so so long and I think I fit in here!

Quick run down.

Freja: 10, ADD, EDS1
Ruaridh: 6,mod/sev ASD, EDS1
Anja: 5, EDS1
Eilidh: 3, mod/sev ASD, GDD, EDS1, Complex partial epilepsy
Alasdhair: 16m,GDD, Diplegic CP, EDS1, Eosinophilic esophagitis

Phew!!! I think I remembered all that

I'm kinda new on here but welcome back xx

 

[nicki01]

Charlie is coming up 4 so I've called the health visitor to ask for the incontenence service to be contacted for our help with nappies.
She said she will bring the along paediatric nurse to our appointment next week to start the assessment but she can't promise it will happen quickly!
Does anyone know how this works and how long it takes?

 

[RachA]

Charlie is coming up 4 so I've called the health visitor to ask for the incontenence service to be contacted for our help with nappies.
She said she will bring the along paediatric nurse to our appointment next week to start the assessment but she can't promise it will happen quickly!
Does anyone know how this works and how long it takes?

Nicki-I've been looking to find out info about this for Esther. It seems that most places say it can take up to about 3 months.
I really can't decide what to do about it for Esther. She's at school now so I don't even know if it's the HV that will be the first contact. Plus she's only in them at night although most nights she has to be changed. She also still needs swim nappies as she always poos in the pool!!


We have been awarded DLA for Esther-the care part. It was a pleasant surprise really.
She's getting on ok at school-we have parents evening next week which should be fun. I'm amazed that she's actually picked up 3 letters that she know recognises and she's nearly there with writing the first letter of her name

 

[nicki01]

Thanks rach, maybe worth calling the health visitor and asking, even if its just for night times it all helps. A friend of mine has a 12 year old with global delay and she gets her nappies for night times.
Good news about the DLA. We only get the care part too. Will need to reapply for mobility when Charlie is 5 they said.

I'm so pleased she is doing well at school, well done Esther , I viewed my first mainstream yesterday and really liked what I seen! The SENCO I spoke with answered all my questions how I had hoped too, I'm pretty certain we will try mainstream first.
I'm having a battle trying toget her an OT, they said she can't see one till I've done the parenting through the senses course which is fine however it started today and I can't attend as its afternoons and I can't get childcare. The next one is a morning course which is fab but its January and for 4 weeks so no OT till at least feb and considering I've asked for this since June I'm pretty annoyed with the time scale! I'm hoping its not a referal for OT as then it will be longer than feb!

 

[mummy3]

You can get help providing nappies in the UK? That's really cool, very helpful!

Why is there so many loops for services like OT? Is there an early intervention programme? Under 3 mine get EI at home and then after 3 its in the school with extra services at home set up through regional center, a state run disability center. The little ones go for an assessment, takes a couple hours and gives a run down of where they are in different areas, then you get services based on that. My 16m old gets OT,PT, ST one hour each a week and then 2 hours with an early intervention teacher.

What are the schools like? Are there special ed programmes or mixed peer programmes?

Curious on the difference between places, we are San Diego. Services are on the ball, health insurance for medical stuff is more hit and miss, we have to pay over $1000 each month out of pocket for my little guys elemental diet. Whereas I think that would be covered in the UK.

 

[sequeena]

Thomas' sleep the last few days have been horrendous. Sigh I'm sticking to the routine though.

Waiting lists on the NHS vary depending on where you live. Thomas waited a year for OT then had 6 sessions of it. They do it fast as there are so many children to see but we can go back whenever. We've been waiting since September for a specialist OT who will work on Thomas' hand. The only 'therapy' he has every week is Portage. Portage is a home-visiting educational service for pre-school children with additional support needs and their families.

Your disability centre sounds like our children's centre (not the same in every area). Almost all of Thomas' doctors/therapists etc are based there. We're there once every 2 weeks at least, usually more though. We're there tomorrow for sleep clinic (3 week clinic, been waiting for that for a year too).

Yes once kids turn 4 they're eligible for nappies if they have additional needs. Thomas has an appointment on the 28th about it even though he's not 4 yet so that will be interesting. I think you are given a certain amount of nappies every month.

Every school in the UK is allocated money to provide for additional needs students. Schools are broken into mainstream, mainstream with an SEN unit, or SEN. A lot of children with additional needs are assessed for a statement (now called an Educational Health Care Plan (EHC plan). This takes 26 weeks to complete and it's not guaranteed that a child will get a statement (We're 6 weeks into it).

Yes I believe all specialist formulas are covered by the NHS.

 

[sequeena]

Can I share a photo of my little guy? He's in the paper today

 

[nicki01]

They are brilliant pics

Yes we get portage every week, been having that for 6 weeks now. We also go through the childrens centre for everything but we only go there once every 6 months for an appointment with the pediatrician and then we get a weeks worth of speech and language but again that only a week every 6 months.
I'm getting fed up of fighting for the OT. I've got home to a leaflet of sensory diet activities for us to do whilst we wait! Not really much help to be honest as I'm not 100% sure on what is sensory for Charlie as we have never seen an OT. Its only what I think may be sensory so without a professional telling me if she is over sensative or under sensitive in what parts ive got concerns about I'm still a bit lost! Hope that makes sense!

We are also a about 3 weeks into our ehcp. I've got to do my part this week which I'm not looking forward to but nursery are going to give me a hand with it.

I'm fed up of having to find out info myself and go on courses which I again have to find myself as noone tells me anything!
Charlie is acting up again, yesterday at nursery she got into trouble as she put a cushion on someone's head and was shouting I'm going to hurt you, when she was told to stop she threw the cushion at her teacher and then spat in her face! :-/
Its her new thing, spitting in your face and bitting. We are having a power battle, she refuses to do anything you tell her, brush teeth, get dressed, get in the car, go to bed, I'm so tired.

 

[nicki01]

Adding to that, we are very very lucky to have the nhs. We don't have to pay for any of Charlie's therapy or paediatrician appts etc. and the help with nappies will help no end once I finally get them!
Everything just happens very slowly!