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

[Reid]

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

That's a shame you have to wait till Feb xx

 

[annanouska]

Consultant rang today as she missed the review. She is happy him waiting for the other consultant until feb, also got to repeat some of the genetics as not enough blood on some tests grrrrr. She is ok with how his seizures are controlled right now and making progress. If he regresses or any issues I need to see her before feb. she said all these tests are trying to understand if there's a rare syndrome causing his fits and delays etc but didn't mention his scan. She just said I want them to see him as how he looks on paper and how he is are different. That makes me wod er does the scan suggest something terrible and he doesn't come across that way or vice versa?e its a minefield. I just keep thinking he's progressing, yes a bit slow but its moving forward that's all that matters. I don't think he will get ASD as there's so much random other stuff going on. Tis language disorder sounds so trivial but it affects him a lot, he is learning new words, house and train yet can not even attempt mummy or bed etc. he still lines stuff up licks things can be very violent run in circles when happy but nobody seems to care

 

[RachA]

We had a report emailed to us from school today - all the children in Reception have been issued one. In one respect its a really nice progress report with loads of pictures in it. I think they are going to be sending them out every term or half term.
It gives the age ranges of where they are at developmentally. So things like drawing a picture of something and they use that to assess motor skills and language iro of if the child can say what they've drawn and give specific details etc.

From the report it looks like Esther is about 50% falling in the 30-50month age range and 50% in the 40-60month. However there are some aspects (mainly maths) where she is in the 22-36month age range.
It's a shame they can't give a more specific age so that we know if she's closer to the 50 or 60 months or if she's still back at 30-40months. Personally i'd say that she's knocking about at the 36 - 40 months.


It was good reading and was lovely but it did make me shed a tear or two!

 

[sequeena]

Rach how is Esther doing at school? Bless her!

Sorry I've been mia again so much going on with statements and such.

Genetics wrote asking me.to ring and make an appointment which I'll do tomorrow. SALT rang and offered 4 sessions of therapy starting on January 22nd. Last sleep clinic Friday too and also need to ring LEL

Had a big shock this morning T has been awarded HRC and HRM. It's a massive weight off.

 

[Thurinius]

I have a question, what exactly is a statement?

 

[sequeena]

https://new.devon.gov.uk/send/send-information/how-is-support-decided/

The link explains what it is x

 

[RachA]

Rach how is Esther doing at school? Bless her!

Sorry I've been mia again so much going on with statements and such.

Genetics wrote asking me.to ring and make an appointment which I'll do tomorrow. SALT rang and offered 4 sessions of therapy starting on January 22nd. Last sleep clinic Friday too and also need to ring LEL

Had a big shock this morning T has been awarded HRC and HRM. It's a massive weight off.

Really good about the DLA


Esther's doing well at school in so far as she's settled in really well. She enjoys going and she actually joins in with various things like PE (at preschool she'd enjoy watching them dance etc but wouldn't join in).
She's very chatty in her own way. She is picking up things but obviously not as quickly as her peers. She is recognising around 6 or so letters and numbers up to 5 but can't put any letters together yet. And the only letter she can write is E and that's a bit hit and miss. Everyone concerned is pleased with the progress she's made even though on the surface it doesn't look like much

 

[sequeena]

Well it might not look like 'much' to outsiders but that really is a big improvement in what, 3 months? Well done Esther! X

 

[RachA]

Yeah it's a huge improvement and I'm sooo pleased

I just wish my mil would see the improvements and accept she's getting there in her own time.

 

[sequeena]

your MIL. It's very easy to wish they would do things faster (I've been guilty of it at times) but when I think back to where Thomas was just a year ago he's done so much! OK so he's nowhere near kids his own age but he IS progressing and that's the main thing.

 

[annanouska]

my mil thinks everything M does is worthy of world recognition and can't even see where he's behind she refuses to accept he's any issues at all tho so...

Is great how well she's doing and Thomas too. I think progress no matter how slow or small is brilliant. This time last year Marcus had no hair, couldn't walk or talk at all screamed pretty much all day and just loved in his own bubble. He now has hair walks and runs, has around 20 ( mostly pointless!) words and interacts a lot more on his own terms.

I think M will be similar to Esther in some ways in that I think not everything will be fully exlained/ have a reason. I do think he is wired up a bit faulty somewhere and that causes things but I've work so very very hard on therapy and things at home special techniques etc i think sometimes the ppl concerned don't see it aside done a lot of the input children usually get referred to. He's been much better the past few days, I'm wondering if he has had a few seizures of a night I've not noticed s he is often upset and hard work then has some then appears a new child!

Is essie ok not heard from her in ages d

 

[essie0828]

Hey there anna

We have been sent on to genetics after DDs MRI showed demylenation inconsistant with CP. Did bloods and met with the genetic dept today. Not much to go on as of yet. Tests will take about 4 weeks and in the mean time we are continuing therapy and hoping this isnt a progressive disorder. to all

 

[annanouska]

Essie. Marucs has demyelination too I think , the white spots on mrs? He has several all over his head we too are waiting on a specialist to explain more. He's had bloods but need to repeat some but not had the form yet . X

 

[Reid]

For those who's kids have speech delay
When it comes to tidying up and discipline what do you do?
I'm at my wits end here junior understands alot of language like if I tell him no but he doesn't understand if I go into a story of why I'm saying no like of he was running towards the road he wouldn't understand it's for his safety.
One of the main issues is mess I don't deal well with mess at all and yes I no its my issue but right now it's getting out of control I don't mind a few toys lying round or even him playing on the floor with playdoh it's that he wants ever single toy he has in the living room on the floor he tips them out the box then after a while will get something else do the same and so on but if I go to clear by toy 1 it's a screaming match he wants it any advice or anyone in the same boat I'm ready for ripping my hair out lol xx

 

[sequeena]

Lynne if.you find the answer let me know I have exactly the same problem

I hope everyone's Christmas went well. We had a lovely Christmas say but boxing day and the 27th were tough as we were round a lot of people and children.

 

[bumpin2012]

Hi Ladies. Not been around much, things are busy here with 2 little ones!

Mr G had his genetic consult and blood work review. Nothing identified. His speech/language delays are falling further behind and he is being referred for autism assessment. I am starting to think he is Aspergers, with S/L delays caused by frequent ear infections. Sleep is still an ongoing issue here too.

I limit the toys allowed out. I have separated all the toys into several bins with lids. He gets a new bin to play with each day.

 

[Reid]

Lynne if.you find the answer let me know I have exactly the same problem

I hope everyone's Christmas went well. We had a lovely Christmas say but boxing day and the 27th were tough as we were round a lot of people and children.

Lol my fear Is there is no answer to it xx

 

[annanouska]

For the story and language...just don't go into a story. Stop danger or stop road etc are all I try with my son. Also he has a picture stop sign and we can sign stop too. He started just the picture then learn the sign and can now even say stop too. His walking is terrible ATM he just runs off anywhere incl roads etc. I have to use a restraint but he kicks off majorly but ive no choice he can't just running into the roads

Regarding toys, we had a huge issue with this and he often thrown the tub over his head. Since moving up to the bigger nursery class I think its army drilled in at tidy up time, plus he goes to a song / sign group and she has tidy up song too. He is better at tidying now but will still cause a complete mess in the first place. I do now move thig s slightly, eg a line of cars on sofa I will move to floor in eact same line if we need the sofa to sit etc. I know its a bit cruel and I adapt everything to his needs but he was dictating everything, he is slightly more accepting of these minor moves now.

We are on a bit of an up ATM, he has developed a few new words. U the disorder is very evident. Most hilarious is he has just learn to say mum in last few weeks yet he says giraffe with no effort?! The sorts of words he learns are unusual, he copies things eg Tom for tree fu Tom. They are keeping an eye on him still for ASD but he is a puzzle. I'm sure whatever is wired a bit wrong in his head is causing the epilepsy and other oddities.

X

 

[Thurinius]

Just wanted to say a happy new year to you all. Hopefully your Christmases were great. We had one minor meltdown taking my ds out with his grandparents for a pub lunch. His little brother wanted to sit on my oh's lap but my son was very determined he should sit in the baby chair.
I think this might be playgroups doing as they insist they all sit down together for snack time and he has applied this to all settings.

Anyhow like many of,you I'm starting 2015 as he mother of a child with a disability, something I never foresaw 12 months back. But after the last few months of shock and stress I am feeling positive about this year.

 

[RachA]

Lynne-I agree with Anna. You don't need to go into a story about why something should be done or not. If they don't understand there isn't any point. While it's nice for them to know that running into the road is dangerous I don't think they actually need more than 'no, stop, danger' until they can understand.

With the toys I would limit what they have access to. Usually we don't have many toys downstairs so it's pretty easy to tidy up after them. Preschool/school is pretty good at teaching them to tidy away too. Esther is actually pretty good at tidying up but she us also pretty good at making a huge mess too!!!

We had a good Christmas period. I travelled to see my brother and family who live abroad. I went on my own with the two kids which is something I've never done before. We had to take two plans and a ferry to get there and the kids were so good especially considering we were delayed at one of the airports for nearly 3 hours and our suitcase with all our clothes in never made it!!! They also dealt with a week of hideously late nights and long lie-ins really well and returned to school no problem