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

[annanouska]

M seems tiny he's only 88 cm but was 2 today.

He had a nice day but it was overwhelming for him so we had sine if his weird quirks pop out.

We are on the ot list I think it's long. I've got him some chewlery from chewi gem he's not grasped it yet!

We got a workbench for his bday he loves playing with the doors. He us door obsessed!!

He babbled to a child today, the boy took his toy and m was ranting at him was hillarious. He never interacts so that was a start.

 

[sequeena]

Ah happy birthday to M!!

Bless him!

 

[RachA]

Went into Esther's school today for a TAC meeting and handover from preschool to school. All went well - the school are employing for another teaching assistant to assist with reception year - they are doing this off their own back and out of their budget so that even if Esther doesn't get a statement she will have have support - yay to that And they are also sending one of the TA's on a speech course to assist with children with speech problems - yay to that too
The big downer (although thankfully the lady who's been observing E in preschool etc has given good advice and is prepared to fight the school over this) is that we have been told that they have no nappy changing facilities in the school and therefore if E's nappy needs changing then either myself or OH will be called in to do it!!! There is no way this is feasible - OH works a 30min cycle away and cycles to work most days. Although i don't work at the moment in a looking into what in can do in september plus also i do some voluntary work in another town which is a 30min drive away. I would have to stop that and not find work for the duration of E still being in nappies!! If we'd known this was going to be an issue then we would of seriously considered sending her to a specialist unit that was able to deal with nappies. It's not for the want of trying either - she just doesn't get it yet. I have a feeling that they can't exclude on the basis of still wearing nappies so they are going to have to deal with it. I am not at all happy about the fact that potentially 3 different members of staff could have to change her nappy but there is only so much that can be done - we are hoping that over the next 8 weeks she might just get it but tbh i'm not holding my breath as she doesn't tell me when she's wet or dirtied her nappy. She is currently wearing just pants - has been since 3.30 and in that times she's done a poo which she hasn't told me about - i just noticed her leg was dirty - and she hasn't wee'd at all. There is a good chance she won't wee now until i put the nappy back on her.

Anyway rant over. Thankfully everything else at the meeting was positive otherwise i think we'd of been seriously considering trying to move her elsewhere.

 

[essie0828]

Hi ladies

Sequeena nice work on the fundraising You guys are sweeties for doing it Your avatar pic is cute, you both look cheeky How's nursery going?? Hope the little cutie keeps on liking it. I hope OT comes through for you guys soon. You will love it!

Rach I hope E picks up the potty training soon. DD is the same, she can't tell me if she's wet. Sometimes she will indicate that she has had a poo but it's always after. I really dread addressing the school issue

Happy birthday to M!

DD has shown quite a bit of progress lately, her understanding has gotten loads better. She's following more directions and showing promise with using an Ipad communication device. She got 8 out of 10 verbs correct yesterday in speech and we hadn't even worked on those yet. Not in pecs anyway. We're still doing all done, i want, and more with those. She will use a binder with pictures of different gym apparatuses and tell us where she wants to go play. She will pull the I want picture, then the ball pit picture and hand them to the therapist. Then we go play until she signs or uses pecs to say all done. She can do that with several different objects now. At home she mostly points and signs. Or brings me things and very deliberately places them in my hand. If it's her blanket she wants cuddles and to be rocked to sleep. If its a closed container she wants it open or if its something with a switch she cant work she will use my pointer finger to try and press it. Said uh oh for the first time Other people are starting to understand her "language". All brags from all 5 of her therapists as well. Im.very proud of her, she is so tough and works hard.

to everybody

 

[annanouska]

that's great news essie sounds like she is doing brilliantly right now

Rach, I know its no help but if she doesn't get it she doesn't get it u can not do anything about that could the TA not be the nappy change person so its consistent? It would be very unsettling for e if mummy and daddy kept turning up for nappy changes even if it was possible its quite a ridiculous suggestion tbh as you would have to basically be housebound, you couldn't just run up to school to change a nappy mid the groceries

Hopefully something will be put into place before then, it would be such a shame to have gotten so far then stall x

 

[nicki01]

Good news Essie, she is coming along fab!

Rach I'm so sorry your having tough times with the school, I'm also worrying about this! Charlie still has a year till school but right now I can't see her out of nappies!
She gave me all the clues this week, told me need poo on big potty, so I took her up and she had already poo'd, put her on there anyway and then we done pants for 3 days after! It just resulted in me having shed loads of washing and scrubbing the carpet all day, she even refused a nappy for bed but wet in there too!
She will wee all over herself and not even tell me she is wet untill I say Charlie you have weed and then she says oh I need the potty!
She knows how to wee on the potty as if I ask her too once, but after that she just says no and refuses to go on!
Its hard but I just don't think she gets it!
We have been awarded DLA for care but refused mobility, I reapplied last week! Fingers crossed!
Those of you who get mobility, do you have a blue badge?
I really really need this, Charlie has kicked our car door into so many cars next to us, I can't park in usual spaces and more through fear of damaging someones car and parent parking is hard to come by!
She freaks out so bad about getting in the car and will kick and bash anything and anyone on the way in, hence the door hitting others! I just had to drive round tesco for 30 minutes waiting for a parent space, its ridiculous, yet there was 8 disabled ones free the whole time but I'm not allowed to use them!

Sorry for the rant, I'm hot and bothered!!

 

[moggymay]

Rach could you use pull ups? When DS1 was in reception they couldn't deal with nappies but most days there was one child or another requiring a change of clothes due to a toileting accident. Could she change a wet pullup herself under supervision? I hope you find a solution When will you hear re statement?

 

[annanouska]

hi everyone.

Hope I are getting something sorted Rach

We saw the consultant today, all genetic bloods were ok. His EEG results are both abnormal but not been properly reviewed by neuro consultant so still waiting of them the paediatrician had a look and just said they are abnormal but she doesn't specialise so not entirely sure. They feel he is leaning towards autism with his behaviours and such but can't diagnose yet at 2 so still waiting and seeing. He will be going for an ADOS ( some autism play session thing) to get mor assessment done then a multi discipline team review at somepoint so right now, just keep on trucking! X

 

[sequeena]

sorry I've only just seen this. I'm so annoyed for you and M. My friend's son has just been diagnosed with autism at (as was my nephew) so it is possible!

 

[RachA]

Thanks everyone.

Sorry for the delay in responding but it's been manic with the end if term plus other stuff happening too.

We've been trying E with the potty since last Wednesday. She hasn't done anything in the potty yet but she will sometimes tell me she needs to do a wee. This is usually after she's done it or else before and I'll sit her on the potty but she won't do anything!!!
In response to your comments/questions: she will more than likely have a TA assigned to her but the TA's are part time-one works mornings the other afternoons-so there will definitely be more than one person changing her.
She can't pull up/down pull-ups but wee isn't really the problem-she wouldn't wee all that much during the day so it's unlikely she'd need a nappy changing due to weeing.


In other news: she's finished at pre-school now Can't believe that she has. It was very sad last Wed in her last day. Now we've got to get her sorted for school. Got some of her uniform-just have to wait to we get back from our family holiday at the beginning if sept to get the last few bits and pieces.

 

[sequeena]

Wow big girl school. Where does the time go

Thomas will be 3 next Thursday. On thee 4th he has his first OT appointment it only took 9 months to get the appointment!

Thomas is falling a lot recently his little legs are like jelly.

 

[bumpin2012]

glad you finally got your appointment sequeena

 

[sequeena]

Thanks bumpin how's things?

Portage just left Thomas was one wriggly distracted boy today.

 

[RachA]

Glad you've got your appointment though Sequeena

They are all growing up far too quickly!! School holidays have barely started and MIL is already asking me if i'm going to find a job at the end of the summer once E is at school!!! Ummm - give me chance to enjoy the summer please and settle E in school and then i'll decide if it's the best thing for my family!!

 

[moggymay]

We had in laws a week or so ago and they were asking will I be starting work during school hours....um given they do gradual entry and we are still unsure how he will cope, No! I am not. DH and I have kind of agreed to wait a term and see how we feel, there is luckily no need for me to go back financially so we will see how Jack settles and go from there. We are level with chronological age speechwise now so no discharge from SLT but no sessions either, we are at watch and wait which I think is right as he is doing it we just need to ensure the progress keeps coming.

How are your little ones coping with the heat and humidity?

 

[moggymay]

Sequeena how does T enjoy water/swimming?

 

[RachA]

I don't know why people think that they minute they start at school then you need to get a job. We are in a similar position where i don't need to work but it would just be easier if i did in order to be able to afford holidays and maybe a second car and meals out etc. E is still under SALT so i'd have to take time off work each week to take her-it wouldn't take long before i'd used up all my annual leave on appointments.

Glad Jack is doing ok though

My two are coping ok in the heat. I think it comes from the fact that both OH and myself cope with the heat well too. It also helps that generally we'll go to the beach so it's nicer there plus we go in the sea.

 

[moggymay]

I want to live close to the beach! Weston is about 40 minute drive away except in the summer when it is about 3 times that due to holiday traffic Fortunately we have a big paddling pool the boys can swim in circles in (just about).

I am in two minds about returning to work....part of me thinks it would be nice to have the extra cash but when I think about having to put them into holiday childcare if I can't get something just in term-time I start to go off the idea. I want to be able to be here with my boys whilst they are growing up....I see other children in DS1s class who are increasingly confident and independent as they spend holidays in holiday clubs etc and do after school clubs but DS1 is a happy independent and confident little boy but in a different way. Part of me feels if we are lucky enough to have the choice I should embrace being able to be with my boys now as there will be time when they are older they just don't want to do stuff with me as I will become embarrassing!

What did you do before being a Mummy Rach?

 

[RachA]

The beach a definitely a perk of where I live-we cycle and it takes about 15min each way. We were there all day today from 11am until a little after 7pm-they didn't get bored at all and I even got to gave a little nap which I'd never get at home!!!

I've always felt that until they don't really need me around I want to be available to them and that to me means working term time only. My mum went back to work when I was about 12 and I hated it when I got back from school and she wasn't there.
I don't see the need for children to go to holiday clubs etc to have confidence-some of it is their character and some is how they are brought up.

I used to work for the benefits agency. Hated it for the last 2 years I was there so I was really pleased to get out. My general working background is admin work but I don't want to do that now-I want to do something interesting lol.

What about you Moggy?

 

[sequeena]

I live a 5 minute drive from the beach it's lovely x