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

[essie0828]

Anna that's just ignorance showing on their part. Epilepsy is no picnic and the medications are debilitating some times. I've see my little 2yr old cousin wiped out from having rescue meds. He sleeps so much when he has had them. He is delayed in speech to but not severely. He has also improved greatly since he has been treated for his epilepsy. I don't understand them thinking epilepsy is curable as well. My aunt is in her 50's and still struggles with it, has since childhood. It is manageable in a lot of cases but sometimes it isn't. It's great your little one is coming along with help from his treatment. That's a roll model for the others in the group if anything

 

[nicki01]

Anna I can't believe you had such rude people with you. That's awfull. Epilepsy is just a walk in the park is it and you only went because you have nothing better to do.... How can people be so judgemental. Really pleased to hear his speech is coming along now and the medication is working.

I've got tori in nursery this morning for her first full session on her own, if she manages ok. I'm really looking forward to spending the morning with Charlie

 

[annanouska]

im just gob smacked people compete over whose child has less speech! I've got to keep going but I don't like it. He did tho that's the main thing. I think parenting is a big competition, I'm so uncompetitive its unreal so I'd not buy into it.

I'm expecting him to not be picked up on ASD as he smiles and laughs has eye contact etc so well now, just need to address his OCD car lining up, sorting m issues over change and general dislike of people

I really never expected such a big change with meds but I know anything can change at any time.

Sequeena any news on t and sleep help?

Hope nursery goes ok, m loves nursery until he's bee upgraded to new room but that will come with time...he doesn't like change. X

 

[Peanut78]

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

- unreal!!!

Sequeena - hope you're getting some sleep

 

[sequeena]

Jesus christ. Ann that's awful I'm so sorry

Did you send the message to me? I'll have to get on the pc my phone won't let me see messages. No news on the sleep front really other than Thomas spends 2-3 hours in his bed every night it's a massive step forward for him. His bed is right next to ours so he's not feeling completely separated - we've co slept for over 3 years.

I am however really annoyed with wheelchair services. I rang to ask for the head rest that fits on his chair as he keeps hitting his head. When the technician brought the chair he aaid to ring and they'd send it out. It's not that simple. Because of his age I have to get a health care professional to put it in writing. Honestly!

T has another paediatrician appointment on September 29th.

 

[nicki01]

Can anyone help me?! Charlie is in size 6 nappies but they are constantly leaking now, everytime we go out she is wet when we get her out the car. I've asked her pediatrician and the health visitor who I contact about getting a bigger size but they just tell me they don't know and I won't get help till she is 4.
That's fine I'm willing to pay for them but I don't know where to get them? I need a size 7, I've read I need to phone the incontinence service but I'm guessing its a different number for area and I can't find a number!!!
I'm going through loads clothes and bedding a week and its driving me nuts!

 

[sequeena]

Oh dear. I don't know about disposables as Thomas wears a 5 but could you do cloth?

 

[sequeena]

These are on amazon might be worth a go?

https://www.amazon.co.uk/gp/aw/d/B00CGXLWWE?pc_redir=1409369960&robot_redir=1

 

[RachA]

Nicki-is it worth trying ones like Drynights rather than just regular nappies?

If you want to try them I've got a couple of spare packets from when my eldest used them. I don't think I'll need them with Esther.

 

[nicki01]

Thanks sequeena I've just found the same nappies in eBay for £2 a pack + 2.75 postage!! So may purchase some to try.

Rach I thought about drynights but my only concern was how much they hold. She wees loads as she drinks like a fish all day also how costly they would be as I'm guessing you don't get many in a pack?

At the moment I use either tesco or aldi and I get 30 nappies for about £5.

I think when I have both girls out of nappies I will be rich lol.

 

[RachA]

Thanks sequeena I've just found the same nappies in eBay for £2 a pack + 2.75 postage!! So may purchase some to try.

Rach I thought about drynights but my only concern was how much they hold. She wees loads as she drinks like a fish all day also how costly they would be as I'm guessing you don't get many in a pack?

At the moment I use either tesco or aldi and I get 30 nappies for about £5.

I think when I have both girls out of nappies I will be rich lol.

yeah i'm not sure how much they hold but you are welcome to try a few of the ones i've got if you want.

 

[moggymay]

Go for pampers 6+ in the green packaging....DS2 was a huge wetter but never once did he out pee one of those!

Rach how is Reception going for you and Esther? x

 

[RachA]

Go for pampers 6+ in the green packaging....DS2 was a huge wetter but never once did he out pee one of those!

Rach how is Reception going for you and Esther? x

It seems to be going well thanks. I'm getting a record back each day saying what she's done that day including what she's eaten and if she's been to the loo. She's fine going in and is enjoying playing. I think the big challenge is going to be when they start trying to teach her her phonics etc. she is tired though.
I'm ok-i don't think my feet have touched the ground since she started as I've been helping my sister out as she's just moved back to the area from Canada.

She's started her next block of speech therapy today-well she will do at 3pm.

 

[nicki01]

Thank you rach, that really kind. We will definatly sort out meeting up soon, I'm just muddling through the weeks as we seem to have hit a stage of appointments again! Dentists, dietician etc and now I've started viewing schools too!

Thanks moggy I will have a go with them. I didn't know there was a 6+ out there!
Wish I would have come on here last night before I ordered my shopping!!

Which school did you go for in the end rach? I can't remember if you said?
I've viewed winchelsea special school so far but have another 7 to see over the next few weeks both special and mainstream!

 

[essie0828]

I second the pampers. We use those and I never get a leak unless she's wiggled out of her diaper somehow. They will fit larger children easy. Try the Pampers Baby Dry diapers, they are a little less expensive than the Cruisers and hold way more.

 

[essie0828]

We've started looking into preschool here and I'm not very impressed. I'm worried actually. 17 kids per class with one certified teacher, one certified teachers aid and a para educator. All kids are mixed in, normal developing as well as special needs. I don't like those odds. DD is a fall risk, big time, and her protective reflexes are terrible. Im so disappointed. I was really hoping that DD would get an aid that only has a couple kiddos to look after or something. I would be so much more comfortable with that if she has to be in a mixed environment. She needs to be in a classroom environment with other kids but I just don't know.

 

[annanouska]

I wrote a huge reply last night then the iPad went flat and I lost it all grr.

Hope everyone is ok and glad things are going better than expected at school for E.

Can I just ask, obv we all have children with additional needs....where do u stand on correcting bad behaviour. Just for the context, group salt one boy in particular is giving my ds a tough time. He's a year older than him and over past two weeks has snatched a toy car, pushed him off a trike, pushed him over to get past him and shoved him for a toy cow now I get 100% they all have social communication issues that's why we are all there and I get that kids do these things but what is grating on me is his mum has not once corrected him, she just stands and watched or ignores isn't pretending she's not seen. I do correct ds eg I will say we don't push, or lets share etc as I feel I need to model the right behaviours and if he is confirmed ASD the sooner I do this the better it fits In routine.

I just wanted to know if I'm being overly sensitive or unrealistic expectations? I dont want to mention it to the salt running it if I'm being ott andy honestly wouldn't mind if she atleast corrected her son

It's a very weird place, nobody seems to want to even help their own kids but me x

 

[sequeena]

Hmm it's quite a tough one as obviously our children have less understanding and/or are more impulsive than a child their age. Thomas isn't particularly 'naughty' (I hate that word). He's quite gentle so he is the one that has toys and such taken off him. Lately he's been quite bold ie at the children's disability centre there is a ball pit and when he's in it with other children he throws balls at them. A lot of these kids are younger and smaller. I tell him no we don't throw balls but if he continues to do it I remove him from the ball pit and give him something else to play with.

I do this with a lot of things but if he ever hits/bites/pushes I remove him from the situation straight away. I have tried time outs but he really just doesn't 'get it'.

I would never not correct him because of his additional needs.

 

[annanouska]

that's what I would do too. I'd not expect any if them there including my ds to do timeout, none of the, can even sit I. The circle for the whole story time I would have thought tho u would just explain be gentle or share etc I'd have no issues with for example what you explained you do with T, I wouldn't even want her to remove him just acknowledge and try to correct

Is very tricky isn't it as I'm sometimes thinking why am I bothering as it must be confusing whe I keep reinforcing a certain behaviour and he only experiences e opposite. Ohhhhh what fun!!!!

Hope U are getting some sleep? Have you had the MRI date yet? The couldn't wake m up after his at all

 

[Peanut78]

Hiya!

Rach - great E is doing so well!

Essie, I'm sorry to hear about the school situation As you know we had a very rough ride with T's school over the last year (for a whole host of reasons - mainly incompetent teachers tho!). It's one of the reasons we decided to move. Are there no other options? Could you bring in learning support for her?

Anna, with regards to the discipline - T understands so I am fairly firm with him. He's pretty well-behaved and gentle for the most part tho (his brother is another story - ) Where I try and be a bit more forgiving, but still firm - is when he gets frustrated because he can't communicate something and throws a wobbly. I realise some children with special needs also have behavioral issues, but I would absolutely be expecting the parents to manage that in some way or another .