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

[mummy3]

So very mixed really help wise. Is the statement the same as an IEP? My post 3 year old kids have the IEP and the little guy has a family plan.

Those are some really long waits and it sounds like you have to go through an awful lot to get the therapies.

Help with nappies would be a huge blessing, same with knowing they can get the formula!

Thomas looks so cute in the pics!!!

 

[RachA]

No the statement is different. The statement tells the childcare setting (preschool or school) what help the child needs on a 1:1 basis. Esther has one and it covers the fact that she has to have daily speech therapy. It also gives guidelines that have to be followed like: making sure she understands what the teacher has said; help with toileting; help with eating; encouraging the use of group games that don't need words so she can play with her peers.
Because of the different things she needs help/encouragement with she needs someone other than the teacher with her all day during school hours to make sure she is ok.
She also has an IEP which outlines 3 things we are working on with her and what is being done to help her achieve this.

 

[Reid]

Aww fab pics love his wee hat xx

 

[mummy3]

RachA, the IEP here covers all the needs for say school, including medical, physical, aid etc as well as the goals. Main thing is getting one, after that its easier to make sure the needs are met. Its interesting the different ways things are done.

I noticed sleep clinic, whats involved there?

My son did his school play today, his aid has done us proud, he joined in, did his lines and managed to stay with the other kids for a full 30 mins Complete turnaround from last years!

 

[Thurinius]

Good week for us. I have spotted lots of imaginative play, for example he is using a plastic ring as a driving wheel, putting an orange in the middle to be the horn and has just told me it's a tractor.
Plus I brought a toy bus with little figures and he's named them all, not terribly imaginatively admittedly, mummy, daddy, nana.
Also keeps pushing the bus off the table and going "oh dear no seaside" so I guess they've all been on a trio to the seaside!
Second session with speech therapist, again he reckons my sons comprehension is very good and he scores particularly well in maths (not sure where he gets that from!)
His issue us that he only says the first syllable of words, so he's going to work on that

 

[RachA]

I wanted to post a picture but whenever I try from my phone it's always too large
But anyway I just wanted to put a picture of the letter 'E'. Esther has been working really hard at school and can now write a reasonable 'E'. I'm so proud of her
And it feels really stupid to say that I'm proud of her being able to write 1 letter and to recognise 4 letters when all the other children in her class are doing so much more.

 

[annanouska]

Rach that's blooming fantastic, go E! Is such a massive achievement to our children and considering how worried u were its a great start

Thurinius that's great going...my son isn't quite there yet but he has decided he likes a teddy recently

Yellow to everyone new and rejoining. W were away this week and will be back away next week, hope he copes again.

We are going for blood tests again Then he sees this different consultant in January about the 'unexplained white matter' on MRI, it was meant to be December so I'm hoping its not too serious as we are postponed.

His speech slowly improves but its very much learnt phrases still ' where's daddy gone' etc tho he is identify and naming a few door, keys, shoes etc. still can not say mummy.

One th g I'm noticing he's starting to count he sits and does one to ten sometimes missing a few, some are very unclear but I don't think he gets what he's doing its like he's just reciting what they go over all day I. Nursery x tam review in a few weeks tho x

 

[Thurinius]

Really impressive racha. The joy we parents get out of the smallest steps, because we know how much harder it is for our lo's

Does anyone have other non-educational needs children? I have a younger son who is 18 months now. I am finding it quite hard when he does something new, eg yesterday we were sitting on the floor and he grabbed my hands and went 'row, row' for row, row,the boat. It just made me feel sad because I used to sing so many songs to my eldest and he never, ever joined in. And seeing my younger son developing it's highlighting all the things my elder son should have done and didn't. And then I feel bad because I should,be really excited for my younger sons achievements.

 

[annanouska]

I do t have any other children but I get what u mean I feel like that when I see younger children out and about. Be proud of both your children, your your youngest is hitting fantastic milestones and celebrate them. Sought your eldest didn't do look how well he is doing now. I know its not the same, from 6 mo until almost 2.5 Marcus was like a feral child who just creamed hit and bit made no interaction, never anted row row etc, now and then he grabs my hands now to do row row, he laughs at peek a boo in a cafe etc. ok it's a bit late but he's doing it (on his terms) now. I wish I'd not spent his infant time trying to force him to enjoy baby massage baby sensory, getting so frustrated at him constantly being different. He's my little Sheldon cooper (big bang) and Sherlock...both very cool and quirky x

 

[Feathers]

Hi ladies hope everyone and their LOs are well!
That's great news on Thomas's ehcp sequeena! Hopefully it won't be too tricky for you to get the statement!

I definitely get what you mean with younger kids Thurinius, DS is 11 months and he is right on track. It's lovely to see (we had first proper words last week - not just mama/dada) but it does make me a little sad. It makes me all the prouder of DD because she has to work all the harder to get where she is though She's a definite fighter!

OUr big news is we have genetics results on Tuesday! I'm really nervous and probably will be upset after for a while but it's a good thing too. DD has blossomed with talking in the last few weeks! She is trying to say so many words, it's fantastic! Portage finishes for us at xmas as they only run until the free 15 hour funding here, but nursery has a new (better) SENCO who is running talk group with her, has improved her IEP and is applying for some 1:1 hours for her to replace portage. Portage will be in and out of nursery for a while too.
Also had some physio development: they noticed her ankle is a little twisted as well as her being hypermobile so she should be going to see another dept about inserts/special shoes to help her walk. She's doing so well with her dance classes though, in a show in a couple of weeks They provide a 1:1 support for her at her ballet/tap group so we're really lucky

 

[Reid]

We have some good news to we have quite a few new words
Baby boy which is what I call him sometimes
Animals along with there sounds
Duck sheep cow and donkey
Super proud
I have his salt coming to the house on Monday to talk about her nursery visit xx

 

[Thurinius]

I He's my little Sheldon cooper (big bang) and Sherlock...both very cool and quirky x

Ha! Exactly my fantasy. My son becomes a web developer or programmer, so he doesn't need to interact if he doesn't want to. But he's really popular at work coz he's so good at his job.
Oh and he has some swanky pad in London overlooking tower bridge that his poor of mum can come and stay at.

 

[mummy3]

Sheldon Cooper That's a running joke here too!! Lots of little engineers on the way! My 6 year old is going to this 6 week camp, learning coding and some other computer stuff that goes over my head, 2 hours every sunday and he's totally focused there. Its mine craft themed, which is his go to obsession right now and he is able to be there and cope even though they upped the age to 8-12. Finding them that environment to flourish can do a lot, helps the self esteem as well as developing their interests and gets him socialized!

Good luck at genetics feathers What things did they screen for?

Some big achievements coming through, new words and writing skills

Thurinus, yeah I get it. Two of my girls are and were advanced, no global delay (did have the EDS impacts but that's different). My eldest was reading chapter books by 3 and her IQ was tested to hit the ceiling at 155 in the WIPPSI test. Big difference from that to full global delay with cognitive impact.

Annaouska, I hope you're not waiting too long Did they say anything about the white matter and what it could be?

RachA, I hope you can put a pic up, I'd like to see it. Writing a letter is huge Does she have hypermobility?

Seems a lot of the kiddos have hypermobility?

We have a busy couple weeks, my 6 year old has the wheelchair people on monday his IEP progress report is in the morning, 5 year olds is on Thursday, perinatology Friday morning and then Alasdhair's MRI Friday, check in at 12!! His scopes are booked for dec 3rd, dreading it because he's had so many reactions the last week or so.

Hope everyones weekends are going well?!

 

[sequeena]

Sounds like everyone is doing well at the minute!

Good luck for Tuesday feathers!

mummy3 sleep clinic where I am is run by a disability HV and a community nurse. It's a 3 week course I go every Friday (last one this week) for 2.5 hours and they talk through different sleep techniques, tailor a bedtime routine just for your child etc.

They noticed T is waking a lot between 10-11 so we've moved bedtime to 10.30 and it's working so far but he is still waking at about 4am once it's sorted we'll roll his bedtime back slowly.

I have HMS too but not to the extent Thomas has it. I sprained my ankle yesterday (it's weak and gives way a lot). I was pushing T in his chair at the time and almost tipped him sideways on the road into the path of an oncoming car he's OK though. My ankle is swollen today and very painful

I was told SALT are running sessions in January so I should get a letter at some point.

SALT are also doing a get rid of the dummy clinic on December 15th so I'm going to go along.

 

[Boo44]

Sequeena I would love it if you could tell us what they say at the get rid of the dummy group. That sounds great! I need all the help I can get xx

 

[annanouska]

Yes I'm on the banish the dummy brigade too BUT I think he's slowly self weaning as he now goes longer periods without will give it to us before nursery etc so I'm not pushing it too much right now. W are on our holidays we pop home tomorrow for blood tests then another x3 nights at a different premier inn. Last week was centre parcs, amazing! He's coping well but here the restaraunt starts service at 6... I takes almost two hours great fun with a tired hungry additional needs toddler. We found the wifi and mr tumble has helped massively x

 

[sequeena]

I will let you know it may not work for us yet but I'd love to be free of the dummy!

 

[RachA]

Lots of little promising things going on at the moment by the sound of it.

How's Thomas' sleep clinic thing going? Has it helped at all do you think?

Mummy3 - no she doesn't have hyper mobility - well not as far as i know. She has been seeing a chiropractor though. She's a friend who is looking into chiropractic treatment for children with additional needs so is using Esther as a bit of a guniea pig. She's said that Esther is too bendy. She should of grown out of things by now but she hasn't. I don't know if that means that she is overly mobile but at the moment we aren't taking it any further as she's a lot of deal with now she's at school.

Hopefully this picture will of worked. These are the 'E's that she did the other day. She then did some lower case 'e's yesterday.



I feel weird knowing that the rest of the class know their alphabet and are starting to link the letters together to make short words and Esther doesn't actually realise that the letters she knows can be put together to make words!

 

[Reid]

Hi everyone I had my son's salt out yesterday she was filling me in on her visit to his nursery a couple of weeks back. She said it wasn't what she expected and was surprised in a good way the only issue he seems to have is at large group time but she explained to the nursery manager why he finds it hard which I was really pleased about. When they start off group time all the nursery kids come together but the staff tell them what to do what songs they'll be singing and his salt said it's to much language for him which is why he will run off or start doing rolly pollys but as soon as they start singing he runs into the middle of the circle and dose all the actions to the songs.
I was told today as well by the nursery manager that the manager from the more specialist nursery is coming out to observe him and see is their nursery would be suitable for him she will be in 2nd Dec then I can go and visit the nursery if they deem it suitable after that we all have a meeting to discuss what's best. xx
Hope everyone else is doing well xx

 

[Feathers]

Well we have an official clinical diagnosis of Noonans Syndrome. I was expecting that so it wasn't too much of a shock. She said they had been considering Williams syndrome but seeing her today she is confident it's Noonans. We had more photos taken and will be seen again when all our DNA results are back (which will be in the next 2 years - wow lots of time) but it's now on her medical record that she has Noonans Syndrome and we're being sent for a heart work up because of the high percentage of children with congenital heart problems with Noonans.

I feel...okay about it. I think I got over my upset in September and I'm more worried about the heart thing than anything else. At least we know and aren't in that undiagnosed group any more which is a relief.