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

[Reid]

Hello 😊
We've had some fantastic progress (touch wood) junior's in a steady sleeping pattern now and actually hands me the toothbrush to brush his teeth before bed then goes straight to the bed no running away no screaming no in and out of bed for hours. I bought a relaxation cd which I put every night when he's going to bed I did use the TV which I think was to stimulating for him ì think the new nursery has helped with this to which is another huge improvement in our life's just now to see my child run to the nursery bus because he loves going there has melted my heart I'm due my 1st 1 to 1 catch up with his key worker on the 9th
they send a diary home each day to say what he's doing and he's settled in really well.
He's still having mega meltdowns when I bring him in the house from being outside someone on another thread suggested a calm down box with sensory type toys so going to see what kind of things I cam put In it
how is Thomas doing with his sleeping just now xx

 

[RachA]

Ladies it's been a long time how are things?

We're still no closer to getting T a statement though it has gone to panel.

Everything else is the same though.

How long has it been since you received written confirmation that they were assessing him for a statement?
I know that with Esther everyone concerned was amazed that she had the statement in place just as she was starting school as that is pretty unusual-most are granted once they have actually been in school a little while.

 

[sequeena]

It's been almost 6 months from written confirmation x

We've decided T won't be going until he has one he just wouldn't cope

Ladies you're all busy. We have a few appointments here and there but not heard back from genetics yet. Paediatrician should be sending a letter soon.

Sleep is awful! I give up completely I feel such a failure about it.

Bumpin when does he get the grommets?

Lynne so glad things are going well aside from the meltdowns. I feel you!! at my nephews first birthday party thomas had 7 meltdowns in 1 hour. It's so exhausting.

 

[RachA]

It's nice to hear the updates

Esther is doing well. She's really settled into school well. She does still have issues with personal space at the moment-as in other children are moving away from her because she's too close but she just doesn't get it and then follows them and consequently annoys them.
She's been in school since Sept and I'd say the 1:1 support and the daily speech therapy is really helping. She can now recognise the numbers 1-10 and knows about 10 of her phonics letters. She can write E S and T although in very big handwriting.
Her sentances are coming along well too-she will now put linking words like 'is' into a sentance. Her sentances are still very stilted though and we quite often don't know what she is saying.
She is obviously still massively behind her peers-we had parents evening last week and all the other children received a statement based on national expectations-we didn't because she isn't even working at the first level!!!
But she enjoys school and lots of the other children say hi to her even though she won't talk back to them.
She's also getting ever so slightly easier to deal with because she understands what we are saying now plus she also has more words to express herself rather than just screaming.

We are in the process of seeing if there is any help available during the summer holidays as she'll go from daily SALT to none for 6 weeks and we're worried that she'll slip back a lot.

 

[RachA]

It's been almost 6 months from written confirmation x

We've decided T won't be going until he has one he just wouldn't cope

Ladies you're all busy. We have a few appointments here and there but not heard back from genetics yet. Paediatrician should be sending a letter soon.

Sleep is awful! I give up completely I feel such a failure about it.

Bumpin when does he get the grommets?

Lynne so glad things are going well aside from the meltdowns. I feel you!! at my nephews first birthday party thomas had 7 meltdowns in 1 hour. It's so exhausting.

Hopefully you'll hear something soon. I assume you've been chasing it up with them. I think ours took somewhere between 6 and 7 months in the end and we bypassed the panel which speeded things up slightly. When us T due to start school?

 

[bumpin2012]

April 10th! I've only been asking for 16 months... Lol.

Ice given up on sleep here as well Sequeena. G is up almost nightly from 12-4/5. Hubby and I are debating moving him to the basement bedroom, so that we can at least get some sleep. JB generally sleeps through his noise at the very least.

Rach- glad to hear Esther is doing well with school. G isn't quite 3, but I'm already anxious about him starting. I'm debating starting him a year late, so he would be starting closer to his developmental age

 

[Thurinius]

My son is very much enjoying his new nursery. They keep asking whether he enjoys singing and dancing at home - he does not! I'm not allowed to sing at all. But he enjoys it at nursery. We have his inclusion officer assessing him this Wednesday and I am meeting them after to discuss.
Annoyingly after Easter the nursery say they have no space for his speech therapist to come and see him. Which I find quite frustrating because he is getting so much out of it - he even sang happy birthday to his grandad yesterday.
His old horrible nursery had their lawyer contact me, they have changed their wording for the governors letter which claimed I was given plenty of choices rather than taking him out (I wasn't)
Apparently now this is a 'miscommunication'?!?
Anyway I'm out of the time limit for a tribunal and the school has sort of apologised - for the distress caused me rather than their actions and put more stuff in place to stop it happening.
Think I might copy all the paperwork and send to my MP. That way they will know they are being watched and thus never dare treat another child like that!

 

[Reid]

My son is very much enjoying his new nursery. They keep asking whether he enjoys singing and dancing at home - he does not! I'm not allowed to sing at all. But he enjoys it at nursery. We have his inclusion officer assessing him this Wednesday and I am meeting them after to discuss.
Annoyingly after Easter the nursery say they have no space for his speech therapist to come and see him. Which I find quite frustrating because he is getting so much out of it - he even sang happy birthday to his grandad yesterday.
His old horrible nursery had their lawyer contact me, they have changed their wording for the governors letter which claimed I was given plenty of choices rather than taking him out (I wasn't)
Apparently now this is a 'miscommunication'?!?
Anyway I'm out of the time limit for a tribunal and the school has sort of apologised - for the distress caused me rather than their actions and put more stuff in place to stop it happening.
Think I might copy all the paperwork and send to my MP. That way they will know they are being watched and thus never dare treat another child like that!

Aww great to hear he's enjoying the new nursery our boys were moved about the same time and I remember reading your posts on it. Xx

 

[Thurinius]

My son is very much enjoying his new nursery. They keep asking whether he enjoys singing and dancing at home - he does not! I'm not allowed to sing at all. But he enjoys it at nursery. We have his inclusion officer assessing him this Wednesday and I am meeting them after to discuss.
Annoyingly after Easter the nursery say they have no space for his speech therapist to come and see him. Which I find quite frustrating because he is getting so much out of it - he even sang happy birthday to his grandad yesterday.
His old horrible nursery had their lawyer contact me, they have changed their wording for the governors letter which claimed I was given plenty of choices rather than taking him out (I wasn't)
Apparently now this is a 'miscommunication'?!?
Anyway I'm out of the time limit for a tribunal and the school has sort of apologised - for the distress caused me rather than their actions and put more stuff in place to stop it happening.
Think I might copy all the paperwork and send to my MP. That way they will know they are being watched and thus never dare treat another child like that!

Aww great to hear he's enjoying the new nursery our boys were moved about the same time and I remember reading your posts on it. Xx

We've only had one meltdown so far, over a gate (nope no idea). My poor mum was struggling with him screaming and wanting to run off with his little brother in the buggy too.
The staff came out and helped get him in. My mum wondered if she should stay because he was still crying but they said she could go.

She got home and the phone rang and she assumed it was the nursery asking her to pick him up. But no it was them reassuring her he was fine and settled and not to worry.

Now if only I'd sent him to that nursery in the first place!

 

[Reid]

My son is very much enjoying his new nursery. They keep asking whether he enjoys singing and dancing at home - he does not! I'm not allowed to sing at all. But he enjoys it at nursery. We have his inclusion officer assessing him this Wednesday and I am meeting them after to discuss.
Annoyingly after Easter the nursery say they have no space for his speech therapist to come and see him. Which I find quite frustrating because he is getting so much out of it - he even sang happy birthday to his grandad yesterday.
His old horrible nursery had their lawyer contact me, they have changed their wording for the governors letter which claimed I was given plenty of choices rather than taking him out (I wasn't)
Apparently now this is a 'miscommunication'?!?
Anyway I'm out of the time limit for a tribunal and the school has sort of apologised - for the distress caused me rather than their actions and put more stuff in place to stop it happening.
Think I might copy all the paperwork and send to my MP. That way they will know they are being watched and thus never dare treat another child like that!

Aww great to hear he's enjoying the new nursery our boys were moved about the same time and I remember reading your posts on it. Xx

We've only had one meltdown so far, over a gate (nope no idea). My poor mum was struggling with him screaming and wanting to run off with his little brother in the buggy too.
The staff came out and helped get him in. My mum wondered if she should stay because he was still crying but they said she could go.

She got home and the phone rang and she assumed it was the nursery asking her to pick him up. But no it was them reassuring her he was fine and settled and not to worry.

Now if only I'd sent him to that nursery in the first place!

Just shows you when someone puts a little effort in it makes all the difference. My wee 1s been going for over 2 months now bus picks him up at 8.40 he's in nursery just after 9 leaves at 3 and is home at 3:30 he loves the bus runs to it when he sees it now the old nursery couldn't even managed a bloody hour such a difference xx

 

[RachA]

The people supporting definitely makes a difference in the children.
Really good that both of them are more settled.

 

[Thurinius]

So my 4 year old was assessed at nursery by his inclusion caseworker or whatever her title is. The last time she saw him was 6 months ago.

She said she could see he was very happy and settled and that his speech had come on. However with her tick boxes she couldn't see any progress at all in him otherwise.
She was very up front that she can only tick off what she's seen and that's why he might score so low. I gave her some examples of imaginative play at him.

But it has got me down because I thought he was doing so well and had come on so much.

 

[RachA]

So my 4 year old was assessed at nursery by his inclusion caseworker or whatever her title is. The last time she saw him was 6 months ago.

She said she could see he was very happy and settled and that his speech had come on. However with her tick boxes she couldn't see any progress at all in him otherwise.
She was very up front that she can only tick off what she's seen and that's why he might score so low. I gave her some examples of imaginative play at him.

But it has got me down because I thought he was doing so well and had come on so much.

That's quite often what happens so down get too down about it. Esther used to do things for her preschool key worker but she'd never do it for anyone else (including me) so they couldn't tick the box. So frustrating for us though as we know they do more than they show.

 

[alibaba24]

So my 4 year old was assessed at nursery by his inclusion caseworker or whatever her title is. The last time she saw him was 6 months ago.

She said she could see he was very happy and settled and that his speech had come on. However with her tick boxes she couldn't see any progress at all in him otherwise.
She was very up front that she can only tick off what she's seen and that's why he might score so low. I gave her some examples of imaginative play at him.

But it has got me down because I thought he was doing so well and had come on so much.

iv stopped caring about these tick box type assesments. I feel like they are going to be so inaccurate. my daughters came back her development was all on the 1st centile. theres just no way only because of the 40 mins or so the doc saw her. try not to be down and just enjoy your son. I know its easier said than done .

 

[sequeena]

Remember girls. Slow and steady progress. Our kids are doing amazing.

rach Thomas will be 4 in august so ideally he will start school in September but whether that will happen I don't know. I've speaking to a lot of people about it, including our postman funnily enough (his daughter is autistic) and he was telling me that the school pays for a taxi etc. I just have so much anxiety around this. I think because I will have to let him go and of course no one can look after him better than I can. Whatever school he goes to it will he one I can't get to easily simply due to my location and the fact I don't drive. I hate not having him close but I won't home school for that reason. That's our last resort.

Thomas is completely obsessed with YouTube recently. I feel pretty awful about it. He has so many toys. Just yesterday we bought him a fire station Wendy house but after the initial excitement he just doesn't want to know.

 

[Thurinius]

Thanks guys.
On the upside his complete lack of progress means they are going to apply for him to have a helper in reception year.

Reception scares me, he find nursery too noisy and there's only 18 odd kids so what will he be like with 30.
Though his nursery teacher said he will probably enjoy the more teacher led activities.

Sequeena don't worry about you time, it'll pass like most obsessions. At least there's something good on you tube. My son is obsessed with the tiny pop channel. I hate it. I hate every damn programme (except peg and cat. I like peg and cat).
Because I hate it so much I've told him the channel only starts at 3 pm. It is actually on all day. Feel tiny bit guilty. But not enough to let him on on the secret.

 

[annanouska]

so glad I logged on just to see that sequeena!! ,at hs is obsessed with you tube, the unboxing of peppa pig toys, kinder eggs and the current fave Japanese nursery rhymes?! He's akso obsessed with Wallace and gromitt so funny just comes out with more cheese grommit?! Things are stable atm we upped his meds and he's been much better but fit last night and today but he is unwell often throws him off course x

 

[Reid]

Girls on you tube look up "little baby bum" my son loves it.
It's all songs and nursery rhymes really great colourful fun videos xx

 

[Starry Night]

Mind if I join? A few weeks back my son was diagnosed with ASD. We're still waiting for the official results to be mailed to us so don't have a specific diagnosis but the Child Development Doctor told us his ADOS test showed him to be "closer to the middle". Whatever that means.

He is 3 (will be 4 in July) and has some verbal ability but sounds like he has more than he actually does because he scripts movie quotes all the time. The specialist said they don't count scripting as true communication (that surprised me) but that he does have some spontaneous one-word and two-word phrases. I can usually figure out what he wants and means but he is unable to hold a conversation or tell me when he's hurt or why he's upset.

Just found out today that his Speech Therapy starts in 2 weeks. He was assessed back in November (before we even thought autism was a problem) so I had to call and beg to get bumped up the waiting list after getting the diagnosis. The therapist complained to me about how busy they were right now but I still got my appointment.

He's also going for an overall assessment. There is a program called the STARS program that all 3 year olds in the community are invited to attend to get assessed in all areas of development. He has the diagnosis already but when I called they said it would be a good way for me to get to know the local support.

ANYWAYS.....my son is my oldest and I have a 10 month old daughter who seems to be developing normally thus far. She and my son are best friends. I'm 32 and my husband is 34. We've been married for about 6 1/2 years.

 

[sequeena]

Girls.... I cannot believe I am finally writing this.... Thomas has a statement... and they recommended a school.... He will start attending an SN unit in September. .. I can't quite believe it. This has been our biggest hurdle for months. He will be 4 when he starts going to school finally.

Hi starry night welcome! It seems our los have similar issues though my son is not autistic. Good luck with the therapy xx