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

[Peanut78]

Hi All, can I join you

My 4 year old son has delayed myelination which manifests as dyspraxia (motor planning difficulty) - this has caused GDD. He is in OT and ST and is catching up in all areas except speech where he still has a severe speech delay.

He just started at a new school (we recently re-located). I've held him back a year as his birthday is mid-July and I don't think he will ever benefit from being one of the youngest kids in the class (he's only 5 weeks off being in the younger year anyway!).

We are ttc, but I've had loads of issues since giving birth to my second son 2 years ago including hormonal imbalances, excessive scarring on the inside of my uterus (c-section) etc. I'm on clomid this cycle, if nothing comes of this month I plan to put ttc on the shelf for a bit - possibly permanently

 

[sequeena]

Oh my, we are moving along aren't we?

Hey Peanut, of course you can join. I should have thought of you earlier actually Do you want me to put you on the front page?

Good luck for the kiddos starting school this week my 4 year old cousin (who coincidentally also has speech delay!) started reception today. He's such a big boy now! Hard to believe that when Thomas was born he'd just turned 2

Rach good luck with the statement, hope you get it soon!!

Bad night again. Thomas cannot get past sleeping 3 hours in his bed then he's up. He woke at 11pm, back to sleep around 1:30am. I am so knackered he stayed in my bed but it meant I slept until 8am.

I will go update the page

 

[moggymay]

Good news here

They (pre-school) are thinking we have made progress - confirms what we hoped. SLT assessment in October to see what happens next. They are confident we don't need to go down the statementing route which is positive, SLT will confirm this after assessment but they don't do anything in our area until January next year unless it is parent requested statement...

Scary thought, we can make our school application next week! My baby is growing up. He starts swimming lessons next week...

 

[essie0828]

Hi Ladies

First Steps will be here tomorrow at 930! I'm nervous and excited. And running around like mad trying to clean with a toddler in tow. That part's not working out so well I really hope this program helps DD some.

I saw my cousin and her little cute man today. . He is 3 months younger than Hayley and is doing so much more than her. It was a bitter sweet day. I loved seeing my little cousin doing so well but my heart sank at the difference between him and DD.

Sequeena ty for doing up a front page. Makes keeping up with you lovely ladies much easier! :clap:
Poor T and mum night terrors and sleep issues suck. Hope you guys have some lovely days and some sleep

I hope everyone's back to school, or off to school adventures go smoothly. to all the big brave kiddos

 

[essie0828]

Girls I need some honest opinions on a Facebook/mil issue. So I have a FB page in Hayleys name to share photos and stuff with the family that lives away from us. I shared some photos of DDs 9 month checkup( pre CP diagnosis) with her length, weight and a caption that said "A happy, healthy lil girl." Well my MIL re posted this same pic a day or 2 ago EXCLUDING the caption "A happy healthy lil girl." Am I right in saying that she would have to physically change the caption before reposting it in order to exclude that? And why do that? Especially knowing she is recently diagnosed? I'm livid! Hayley is a happy, healthy lil girl that just so happens to have CP! Am I being over sensitive? This is all still pretty fresh and raw but damn. That just seems like a low blow.

 

[essie0828]

And of course I did something stupid in replying to the post in the comments section that it was sad that she would re post that pic without it saying "A happy healthy lil girl" and then I re posted it the way its supposed to look. Some days I think I should just delete our FB

 

[sequeena]

I think when you share something on FB it doesn't always copy the writing underneath so it could have been FBs fault, not hers. You should speak to her hun but I understand the automatic anger and becoming defensive.

And yes she is a happy healthy girl!

Hope the first steps appointment goes well

moggy that's great news!! Our kids are growing way too fast I really don't want him to go to nursery next year (though by then I may be bald and ready to send him )

Thomas was sleep before 7pm then woke an hour later because my OH decided to use the upstairs loo we have a downstairs bathroom too, use that one!! Anyway, he screamed like a banshee. He'd been a little bugger all day, crying whining and head butting everything OH left for work oh god it was awful I've not heard screams like it for a long time.

Got him to sleep at midnight and he woke at 8am. I was up 2-3 times for a wee too

We're going to softplay this afternoon though I'm really looking forward to it

Tomorrow morning welfare rights is coming to the house to help us fill in the DLA forms. I need to find T's developmental report, SALT report and ENT report. HV said she'd write a letter of support too so I need to get on that.

 

[AP]

I always forget to drop in here!

Yeah I'm in for the front page - Alex is 4, ASD, developmental delay and non verbal
No more for me. Not for at least 5 years if anything

Tori is 2 and has speech and gross motor skills delay

 

[sequeena]

Hi AP :wave: Will add you

 

[Peanut78]

Moggy - that's all very exciting! What does the statementing actually mean - I've heard a few people from the UK refer to it...? My hubby is British, but we don't live in the UK...

Essie, I don't know anything about how FB works and whether your MiL would have removed the text intentionally - but I can totally see why this upset you If she did remove it then you have every right to be upset! I am very sensitive in terms of comments that are made about my T and can be very defensive (perhaps overly so )...

 

[RachA]

Peanut-to answer your question re the statement. Basically it's a statement of educational needs. If you get a statement it means that the school have to provide x number of hours per week for the child to have one to one support. So a child is in school for roughly 30hrs per week and they may have a statement for 20hrs. For that 20hrs someone will either work totally 1-1 or else it could be a case of the person watching and intervening if needed etc. I'm torn between wanting Esther statemented or not. I think part of me wants to believe that when she starts school next year that she won't need any extra support.

 

[essie0828]

You girls rock! Thanks sequeena for letting me know FB may have caused it. I removed my comment and then uninstalled my FB app I'm a little to defensive and really just need a FB break. I'll miss seeing little Ts cute face but I'll be back around im sure.

Peanut glad to know I'm not the only one that gets a little bent out of shape And God knows I don't need another reason to be angry.

Well my Hayley pulled a chair over onto her face this morning. It hit her pretty square on the cheek and she may have a black eye I feel horrible. And the saddest part is she was trying to dance but got a little tooo jiggy with it and pulled the chair over on top of her as she fell. I hope it don't scare her off dancing forever

The First Steps evaluation went over ok. Hayley warmed up to the ladies pretty fast and was nice but I'm afraid of how advanced the eval was. Hayley couldn't do half the stuff not really looking forward to getting the results but ready or not Monday is the day. I will meet with her therapist then. They will focus mainly on PT according to the service coordinator. But that's all subject to change based on the evaluation. Although I doubt it.

And my baby crawled up a step all on her own for the first time today And in general she has done really good today. She's into everything and I can barely keep up! I Love it!

Girls how about a story!?? Something your kiddos have done today. Annoying, cute, scary, whatever. Just a snippet of your lives. Lol. I just realized this no FB thing may be affecting me in some strange way. I rarely ASK people about their lives....I just check FB

 

[essie0828]

Peanut-to answer your question re the statement. Basically it's a statement of educational needs. If you get a statement it means that the school have to provide x number of hours per week for the child to have one to one support. So a child is in school for roughly 30hrs per week and they may have a statement for 20hrs. For that 20hrs someone will either work totally 1-1 or else it could be a case of the person watching and intervening if needed etc. I'm torn between wanting Esther statemented or not. I think part of me wants to believe that when she starts school next year that she won't need any extra support.

Thank you! I was so confused to. How much longer till Esther starts school? A full year?? She may very well be able to start on her own. If she does, but then needs help will they still give her support??

 

[sequeena]

Don't worry essie, I am the same I'm a proper mama bear when it comes to Thomas' disability.

Poor Hayley! She's ok I'm sure, T has also pulled a chair on himself in the past. I think it's a toddler rite of passage

Glad the evaluation went ok. Sounds like it was a similar test to what T had. You know it's probably not going to be great so don't feel down just accept what's wrong and make a plan to change it

Hmm... well today I took Thomas to a local soft play for a meet up with other mums and children off a local facebook group. The women were nice, 1 of them I already know as her LO is 1 day younger than Thomas and we were at the same PND group together. The soft play was awful. £3.50 for less than an hour because they were closing at 3pm for a private party. £1.40 for a fruit shoot and a bowl of greasy chips (fries) the toys were dirty and some were broken. We won't be going back. T didn't enjoy it either he stuck by my side for most of it, didn't interact and only pushed round a pram or a ride on toy.

 

[sun]

Hi all! B had his first day of school yesterday and it went pretty well. We got there to a sea of sobbing children though so it was a bit stressful. B wasn't really sure what was going on. But he saw a lightning mcqueen car in the toy area so went right in and got the car and was instantly at home I just hope they see/understand and let him carry a car around. I think they did yesterday because it was the first day, but I'm not sure if they realize that he gets very agitated without one. When I tried to explain some things, they said "Oh yes, they're all like that". They don't really take into consideration assessments from the treatment centre he was at - they like to make their own based on how he does. So he's kind of starting from scratch. Also he's very passive and distant in this kind of situation, so he's easy to overlook or ignore since he doesn't make a fuss.
Anyway - I thought I would give a little update. I can't believe how stressed I am about him in school. I feel like the day drags on until 3:45 when I can get him

 

[essie0828]

Toddler rite of passage I suppose your right. And she's fine. I checked her cheek bones and she didn't break anything. She calmed quickly and played on. It still makes me feel a little guilty though.

Eeeww. Sorry the soft play sucked. That really does sound unappealing But the group play sounds like a great idea! Hmmm, maybe meet somewhere else?? I really need to find something like that for DD. And a CP support group close by would be great!

 

[RachA]

Essie-glad the evaluation went ok. I think they are always a little scary-Esther can never do half if what they want either!
I'm sure her face will be ok-both of mine have done awful things and they never look as bad as I think they will.
Yeah-Esther starts school Sept 14. The trouble is that if she starts off without a statement and then they decide she needs help it can sometimes be really hard to get one. I've a friend whose daughter is dyspraix and it took most of primary school to get the statement!


Sequeena-I've been to soft plays like that. Tbh I tend to stay away from them as I find them too stressful. I'm not a paranoid parent at all but I can never relax as I want to know where Esther is lol

Sun-I'm sure the school will understand about the car thing.


Well a story about Esther-from yesterday not today. We were at the beach and she jumped off something 3 times in a row! She was holding my hands but she jumped without me pulling her and she did it with her two feet together rather than one at a time. To most people us sounds stupid that I'm really excited about that but for us it's a huge thing

 

[essie0828]

Sun, I dread the day DD starts school. She's very much the same in that she is easy to over look. She's very passive and quite but can throw one hell of a tantrum if you don't do things "her" way so to speak. It worries me that someone will be mean to her because of that. Hopefully though your school really is that experienced with dealing with little ones like yours. Mabey they can teach him to calm himself without the car? But honestly I say let the little dear have a car and maybe his teachers will to. I'm about 75% sure I will have to send Hayley off with her blanket

 

[essie0828]

RachA, I would be tempted to have her statemented if I thought she may need it later in the year as the curriculum progressed. It would be better to have it in place if she needs it. Mabey if she does very well they will let her go solo some??

Aww hun if Hayley jumped in anyway Id probably crap my pants with excitement. Hunny you celebrate that! Go Esther!

Uh oh.... and the bear stirs in its den.... nap time is over Ttyl.

 

[RachA]

Yeah we will push for the statement - it feels kind of bittersweet tbh. I'd rather it be in place but it makes me feel like she's then going to be 'labeled'. I know that there isn't really a stigma anymore but sometimes I think that getting the statement will make her go from being 'Esther, the cheeky monkey, to 'you know, Esther with that development problem'. I know that the statement doesn't change who she is to us but it will to other people. Very few people know that she has a developmental problem-only those people that need to know.
And gosh, there's me feeling sorry for myself now when I don't need to lol.