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

[RachA]

I don't get why people have to make comments about dummies. There have been times when I've wondered why a child had one when they were an older child but I'd of never said anything to the parent as it's nothing to do with me.
Esther had hers until a couple of months ago, so was over 4 1/2 when we stopped using it. I was glad to get rid of it but I have to confess there are still times when one would be useful!

 

[emyandpotato]

So my HV has now washed her hands of T and keeps saying ring the disability team if only his disability hv was easy to get hold of! Sigh

Thomas had pre school boosters today so was very upset and had his dukmy
Some busy body told me to take it out of his mouth. Why is there always one.

Eurghhh I cannot stand this! When Rory was newborn some old woman cornered me in the doctors and started telling me disgraceful it was that another child in there (who was about 2) was playing with a dummy in, right in earshot of his poor mum. And then proceeded to tell me that bottle feeding was bad for my child and I should be ashamed. I was too shell shocked to say anything, or to tell her it was EBM in the bottle. Ridiculous people.

Also.. preschool boosters? Is this for every child? I've not heard anything and Rory and Thomas are the same age?

 

[sequeena]

Yes all kids get them. Usually at 3.5 but they were doing it today so we just got it over with. 1 injection and now he's done until he's 14.

It was an old man that cornered me too

Thomas is on another ramoage tonight. I should film him he bounced across the beds runs round constantly fidgiting etc I cannot restrain him I don't know what to do. I have to be up at 6am.

 

[SammieGrace]

It was an old man that cornered me too

People need to mind their own business! Cullen still has his pacifier and I just know he is not at all ready to give it up. I am sure the speech therapist will have something to say about it though....

 

[nicki01]

Having a hard time today.... The EP is going to assess Charlie this morning and I'm meeting her at 12 to start the statement! I've had to list all my concerns about her starting school! I filled 2 sides of a4 paper!
It horrid writing it down, I'm petrified about the whole thing! I want to keep her at nursery forever.
Its all becoming to real, the diagnosis didn't hit me, but today I'm struggling. The speech and language therapy, the appointments etc didn't really phase me!
But this statement starting has hit me hard, its real, she is autistic, she will always struggle, will she ever be fully understood, she can't express herself and her speech is so unclear and so limited. I'm so scared of putting my baby into the big wide world of school and her being a little lost soul unable to reach out when she needs someone! Being in trouble for being naughty when actually she is over whelmed and fighting her own battles.
Wow its all just so much.
That's just a fraction of how I'm feeling right now!
I've barely slept and just keep crying!
I'm dreading going to this meeting, I don't know how I'm going to hold it together and not break down in there.

Sorry its long!

 

[sequeena]

It was an old man that cornered me too

People need to mind their own business! Cullen still has his pacifier and I just know he is not at all ready to give it up. I am sure the speech therapist will have something to say about it though....

T's SALT is fine about it. They understand he needs it. He only has it for sleep and when he's upset.

Nick it's going to be ok xxxx

 

[RachA]

Having a hard time today.... The EP is going to assess Charlie this morning and I'm meeting her at 12 to start the statement! I've had to list all my concerns about her starting school! I filled 2 sides of a4 paper!
It horrid writing it down, I'm petrified about the whole thing! I want to keep her at nursery forever.
Its all becoming to real, the diagnosis didn't hit me, but today I'm struggling. The speech and language therapy, the appointments etc didn't really phase me!
But this statement starting has hit me hard, its real, she is autistic, she will always struggle, will she ever be fully understood, she can't express herself and her speech is so unclear and so limited. I'm so scared of putting my baby into the big wide world of school and her being a little lost soul unable to reach out when she needs someone! Being in trouble for being naughty when actually she is over whelmed and fighting her own battles.
Wow its all just so much.
That's just a fraction of how I'm feeling right now!
I've barely slept and just keep crying!
I'm dreading going to this meeting, I don't know how I'm going to hold it together and not break down in there.

Sorry its long!

It's horrific writing the parents report. I assume this is for the statement?
Ours was about 12 sides of printed a4 paper. I did most of it but had to hand the last section over to OH to finish as I was just so upset over it all.

On a positive note though-I've been dreading E starting school but she's settled really well and it makes such a difference having the help in place.

 

[veganmama]

rachA

im just curious to how your daughters speech is doing now? i remember you from a while back and was just curious since my son is speech delayed too

 

[sequeena]

I can't do this anymore. No one wants to help me. I cannot do 4 hours of sleep a day anymore.

 

[essie0828]

Sequeena are you offered respite services at all? We were offered 160 hrs a year with DD disability waiver. I don't know how things work over there but it may be worth looking into. Sorry I can't offer something more tangible. Too bad we can't e-mail sleep.

Hi ladies
DD has had another 5 level assessment and it has been a little tough on me. She's scoring between 15 and 18 months for cognition and that has me worried. We met with a Dynavox rep and will be trying DD on the maestro device. It's an augmentative communication device that is based on PECS but will provide a voice with her choices. We are hoping to bridge the gap between her expressive language and receptive language. The device is complicated and I'm a little intimidated by it but we have to try something. I don't want to send her to school until she can communicate her needs somehow. Therapy is still going full blast and we have added more OT to help ready her to use her AC device. I really hope she takes to it. Love to all, especially you ladies struggling

 

[sequeena]

Thanks essie. I looked into it but they don't offer it in my area until the child is 8

Wow that does sound intimidating but also really cool

 

[RachA]

rachA

im just curious to how your daughters speech is doing now? i remember you from a while back and was just curious since my son is speech delayed too

Hiya

Esther's speech has improved a lot over the past 6 months. She is still way behind though. I find it hard to describe really as I obviously understand a lot of what she says whereas the majority of other people don't.
Having said that her single words are a lot clearer. Her sentence formation is hit and miss. She says long ish sentences but only two or three words are clear. Her linking words are still missing most of the time. But she can get her point across without the need for a whole sentence.
She really struggles to ask for things-whenever she wants something the conversation goes like this:

E- what Esther like?
Me-what would you like?
E- like?
Me- what do you want Esther?
E - want?
Me - you need to say what you want
E - want?
Me - use your words
E - words!
Etc etc

9 X out of 10 I know what she wants as she's usually seen a toy or item of food that she wants. I know she can say the word but she just can't say 'Esther like biscuit' or 'I would like biscuit'

 

[essie0828]

Thanks essie. I looked into it but they don't offer it in my area until the child is 8

Wow that does sound intimidating but also really cool

Well that's total crap huh? Eight years old!? By then he will be able to watch himself and you will be from lack of sleep. I hope you can get a break soon hun.

 

[essie0828]

RachA I totally cracked up reading that conversation between you and Esther. Especially her reply to you telling her to use her words My kiddo gets frustrated when I make her use words or signs and she gets cheeky like that. Love it!

 

[annanouska]

I tried to reply last night but couldn't so I've sent a link to your fb messages hopefully will come through and maybe help. I would defy push for the melatonin. I can't understand why they won't offer for you, not fair at all. Have you a date for the MRI yet? Ours is Tuesday, anyone done the head MRI under sedation? I'm fine with it I had one few weeks ago so I know what it's like just worried if sedation will be enough to keep him asleep as so loud. If not they will repeat under ga.

M is picking. Up a lot of words but can't say mummy or if he wanted a drink or food etc it's weird stuFf like what's that, oh look, right, left up down.

X

 

[Boo44]

Wow annanouska sounds like M is really coming on in his speech! Slow progress here as usual x

 

[RachA]

RachA I totally cracked up reading that conversation between you and Esther. Especially her reply to you telling her to use her words My kiddo gets frustrated when I make her use words or signs and she gets cheeky like that. Love it!

It is really funny reading it. We can have countless conversations like that each day. She's funny because she isn't really getting frustrated by us not understanding.


We've had a bit of a break-through with E's potty training too recently. She's been out of nappies during the day since the beginning of the summer hols and she would never tell us until she was doing it. This last few days she's been telling us she needs to go with enough time to get her to the potty/loo before she starts going She also did a poo yesterday which was very exciting. She did say she needed to do a wee but when it came out it was a poo! But it was the first time she's done it on the potty so I wasn't bothered what she called it!

 

[nicki01]

Rach- yay for potty training, hopefully she continues to progress with it.
We are just starting the statement process, I haven't even got to the parents report yet and I'm already a mess lol. The list I wrote was just my concerns to ask the EP about.

Sorry your lacking sleep sequeena, we have a big issue with sleep too! I don't even know how much I get a night at the moment.
Tori wakes every 2 hours still has done since birth, Charlie spends 1 till 4 or 5am awake reciting numberjacks, tori then gets up for the day at 4:45am while Charlie has an hour before being up for the day too! Its getting ridiculous, all I do if doze all night whilst trying to keep half an eye on them! I keep getting ill where I'm so run down, its horrible!

 

[annanouska]

We had group speech therapy today, we have been waiting ages.i didn't realise he would pick up a few random words as a result of his epilepsy being treated so obv we are still down for it. I got the cold shoulder and heard " well he's said look and light its just ridiculous wasting a space"?!?! At what point was there a mummy war as to whose child is more disabled?! Complete madness. W are still miles behind but yes made progress since medication. Most of the children were ASD and we are awaiting our assessment but to be honest things are changing a lot with control of seizures now tho we still have a lot of issues. It was discussed in. Brief conversation how it must be easy having a treatable condition like epilepsy as my son can be cured?! I honestly wonder what these people have running through their heads. With potentially being ASD himself I'm well aware of the challenges and difficulties faced. I really wanted to say, yes I just to drug him up so he's sick and passes out as he's so tired from the drugs but its fine as he's cured!!!

Sorry compete rant but I need to vent it out and real,y hoped somebody would understand,I was just trying to help my son just completely go smacked that people get competitive over who is the most behind or disabled

 

[Boo44]

Oh no that sounds awful annanouska I can't believe that either. I'm so happy for you that M is improving so much with his meds including with his speech, that's fantastic!