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

[annanouska]

sorry if this sounds funny but I'm glad to know E still had a sleep dummy as M can't cope without it for sleep and the hv makes me feel terrible about it.

I'm pleased it went so well for her fi gets crossed it carries on x

Sleep deprive EEG today wooooo

 

[RachA]

That doesn't sound funny. I never imagined I'd have a 4 1/2 year old with a dummy but up until now I've found it impossible to get rid of it. I came to conclusion with my son that it's better to get rid of it once they can understand properly what's going on. For D that was at just shy of 2 1/2 years.
E does understand now so it's the right time for us.
I'm just hoping she'll be as good tonight. She did wake up at 6sm this morning and I wondered what on earth we were going to do. But then we left her, she called out to me a couple of times (if she was really that bothered about getting up she'd could of as her door was open slightly) and then went back to sleep for another hour and half!!

Don't let thd HV make you feel bad. If you time it right you should be able to get rid if it with minimal hassle.

 

[moggymay]

Well done E!!! Hope you managed last night too

 

[annanouska]

I always said I'd never have a toddler with a dummy he doesn't u der stand either. He just looks for it or finds something else eg. Toy to use in place. He doesn't really have it of a day time just naps and bed. Only think is he can get the whole thing in his mouth.

EEG was ok they saw abnormalities last time but think it may have been stress. Just of t to wait til review in July for results x

 

[RachA]

I always said I'd never have a toddler with a dummy he doesn't u der stand either. He just looks for it or finds something else eg. Toy to use in place. He doesn't really have it of a day time just naps and bed. Only think is he can get the whole thing in his mouth.

EEG was ok they saw abnormalities last time but think it may have been stress. Just of t to wait til review in July for results x

I always said I wanted it gone by 3 years at the latest. Esther's 4 1/2 but as she's actually 18 months behind that makes her developmentally a little over 3 years so about the right time

Hope the results show what you want.

 

[essie0828]

Hi ladies

Been mega busy here lately, kiddo has a sinus infection and fluid on her ears. Makes for one cranky, non sleeping toddler. She has puzzled us for 2 weeks now with her behavior and stall in progress. Hopefully knocking out this infection will fix things.

For the ladies that have kiddos that bite and have sensory issues. They could be seeking oral sensory input and may benefit from chewing or biting therapy chews. They've helped us tons. DD will still bite sometimes but its been dampened some.

Been gathering up a therapy kit for my lil cousin. He has scored low in three areas of his early intervention tests and will begin OT and speech soon. Found the coolest thing for kiddos that are sensitive to water, Water Beads. I can't stop playing in them. They are very enticing and feel wet but look like little marbles. Not for eating but non toxic and supervised of course but fun fun.

 

[essie0828]

Girls I have not kept up with the reading on this thread lately but I've skimmed enough to know there are new ladies Welcome

We've started quite a few new OT techniques with kiddo and I am waiting to see how they do. Got a tactile sensory brush and have started tactile sensory input on DD 3xday. The brush is super soft and I do a specific pattern on her body avoiding face, neck, abdomen, groin and feet. So far she's loving it, it calms her down if she's close to nap time or bedtime. Sometimes she throws it....and we back off a bit, skip a time or two and she loves it again. I have no clue if this will lessen her waking in the night but her OT seems to think so. We shall see. He thinks she's being woke up by the feeling of her clothes and bedding because she likes to sleep without anything covering her. I can barely keep her in a shirt and if its not her crib she don't sleep. Overnight trips are a sleepless mess. She will sleep in the carseat tho. Speaking of sleep, its 430am here and I'm wiped out. DD has been up half the night and is finally sleeping soundly, bye ladies. I'll try to catch up properly later.

 

[annanouska]

I'm angry!!

Went to library today and the lady looked very misserable when I went up to her to ask a question. Enquired about u5 story time and if he could go. I explained his needs and said he will be better to wonder at edge of circle as wont join in/ sit still. He's not noisy just can't sit in a circle. She felt he would be too disruptive for story time and " can't u take him to a disabled group"? Wtf?! If he was being disruptive I'd remove him anyway. He's still on his journey so not officially "disabled" anyway. Just really seriously annoyed me x

Essie. I think that brush sou ds relating x

 

[RachA]

I would of been annoyed too Anna.

I took Esther to see a chiropractor today. She's the wife of someone OH works with and she wasn't interested in seeing Esther to see if any of her development issues could be sorted out with a few sessions. She not charging us as she's using it as an opportunity to develop her skills as well as see if it has any impact. I'm guessing any improvement will be in her motor skills.
She has established that Esther doesn't have the full range of movements that she should so she's going to give us some exercises to do with her

 

[RachA]

So my wonderful (!) mil really knows how to twist the knife! She's just informed me that there's a boy starting at Esther's school in sept with her who also has speech problems but (and to quote) 'he's just got speech problems and is very intelligent'. So yeah thanks for making me feel like my child is stupid as well as delayed

 

[Plex]

Rach - well ur mil certainly isnt thinking before she speaks Something like that would make me feel so churned up inside with anger, upset and stress, to the point I wouldnt know what to say - did you say anything back to her? xx

 

[RachA]

Thanks. No I didn't say anything. I was just too amazed that she'd actually said it. The trouble is she thinks being academic is the most important thing. She's asked me so many times if I think my 6 year old is grammar school material and I'm like 'haven't got a clue and don't actually care as long as he enjoys himself and works to the best of his ability'
So neither of my children fit into the right box for her and Esther even less so. As she doesn't have an official diagnosis other that delayed she can't say things like 'well if course my grand-daughter has special needs' to her that is better than saying 'she's not talking yet and ages nearly 5'

Sorry am going off on one tonight-had a rough couple of days.

 

[Boo44]

So my wonderful (!) mil really knows how to twist the knife! She's just informed me that there's a boy starting at Esther's school in sept with her who also has speech problems but (and to quote) 'he's just got speech problems and is very intelligent'. So yeah thanks for making me feel like my child is stupid as well as delayed

Ah do you think maybe she was in some way trying to be reassuring like, oh there's a little boy he's intelligent but also has speech problems like E? Not sure why I'm trying to make what she said sound better, but I know that sometimes they open their mouths without thinking xxx

 

[RachA]

So my wonderful (!) mil really knows how to twist the knife! She's just informed me that there's a boy starting at Esther's school in sept with her who also has speech problems but (and to quote) 'he's just got speech problems and is very intelligent'. So yeah thanks for making me feel like my child is stupid as well as delayed

Ah do you think maybe she was in some way trying to be reassuring like, oh there's a little boy he's intelligent but also has speech problems like E? Not sure why I'm trying to make what she said sound better, but I know that sometimes they open their mouths without thinking xxx

Thanks. I did think that myself but it was then followed by other stuff along the lines of 'he'll be ok because he is intelligent so when he starts speaking it won't be an issue' It definitely wasn't meant to mean E will be ok cos this lad is similar.

 

[annanouska]

That's just weird and tbh something my mil would say! This sounds terrible but I'd imagine it's quite hard to assess intelligence 1. So young and 2. With speech issues. A child may be very clever but can express it in sign or pictures etc . What does it matter anyway she's still your little girl and it's sad she can't see that. X sorry not got anything helpful to say x

 

[RachA]

That was helpful

It'd be nice if she accepted both of the children for who they are. More than likely they'll be her only grandchildren.

Like you say-I don't know how you can assess intelligence that early on. I know some children shine but tbh I'd rather mine were happy rather than being forced to do extra work just to prove they can do stuff.

She's so frustrating!!!!

 

[essie0828]

Wow! What a witch. Rach your babies are just that, yours, and they are perfect. Who cares if a 5yo can't solve the mysteries of life. Esther will find her way to communicate with help. Your MIL needs to be grateful for what she has in the beautiful grandchildren you provided her.

 

[sequeena]

Hi everyone I'm sorry I'm not around I'm quite busy right now. Life has ramped up by 100%. Thomas is starting another nursery tomorrow morning with a support worker.

:hugs for everyone xx

 

[essie0828]

Hi everyone I'm sorry I'm not around I'm quite busy right now. Life has ramped up by 100%. Thomas is starting another nursery tomorrow morning with a support worker.

:hugs for everyone xx

Awesome news! I hope he has a great time tomorrow.

 

[essie0828]

Awesome news! Hope he has a great time tomorrow.