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

[aliss]

What do you do on those days you are always seeing kids the same age as yours who are walking and talking and sitting and laughing and.......... normal??? Kinda feeling bummed today. Got some good news at least, apparently now that we have our formal autism diagnosis, we get retroactive disability from birth (which is great b/c I haven't been able to work as the daycares kept booting him out, they couldn't cope).

 

[sequeena]

Aliss I'm having one of those days. I smile rather forcefully and have a cry when I'm alone.

I'm so glad you're getting disability, does that mean you'll have a rather large back dated payment? Bet that extra money will help SO much.

 

[aliss]

Aliss I'm having one of those days. I smile rather forcefully and have a cry when I'm alone.

I'm so glad you're getting disability, does that mean you'll have a rather large back dated payment? Bet that extra money will help SO much.

I'm sorry you are having one of those days If only you weren't so far away I'd have a coffee with ya

Yeah I have no idea how much $ it is but it's about 42 months....!!!!!! holy cow!!!

 

[sequeena]

I'm amazed they're actually back dating it that far but how great!!

It is a real shame none of us are closer, I don't know anyone in real life who has a child similar to mine.

 

[aliss]

I'm amazed they're actually back dating it that far but how great!!

It is a real shame none of us are closer, I don't know anyone in real life who has a child similar to mine.

Yeah pissing myself, totally unexpected eh?!?!

I do ironically know a girl whose son is just like Thomas but she lived by me, and not you Oh dear. She moved away back home.

Having a disabled child + expat = SUCKS

I can't wait to leave. I spent 2 hours with a psychologist today and understood maybe 10 sentences. FML.

 

[sequeena]

I have no idea how you deal with the language barrier, I'd be tearing my hair out. Do you have a date for when you move?

Ah yes I remember you saying before, what a shame I need to get to the disability play groups but with his therapies and the cost of travel I can't afford to be going here there and every where

 

[essie0828]

I'm amazed they're actually back dating it that far but how great!!

It is a real shame none of us are closer, I don't know anyone in real life who has a child similar to mine.

Hayley is the only confirmed CP case at the rehabilitation hospital we go to and I don't know anyone else with a child similar in development either. It's really isolating sometime

 

[essie0828]

Aliss yay for backdated disability. Crossing my fingers for the same thing but certainly not holding out any hope. Our system is quite different and difficult.

 

[bumpin2012]

we have a word!!! "doggie" hes following the dogs saying it over and over... Lol

ultrasound today was good. We're finding out gender in Christmas day weirdly, baby measures 19+4 ( I'm 19+2) and weighs 11 oz. G also measured 19+4 (I was 20+0) and weighed 11 oz! baby was very reluctant to show the sonographer anything she was looking for. my scan lasted almost an hour because I kept having to stand up and jump around trying to make baby shift position. s/he kept moving in a way that stopped the sonographer from getting the picture. someone is trouble already !

hope everyone's having a good build up to Christmas/ whatever you celebrate

 

[sequeena]

Bumpin that's amazing and I think quite a complicated word for his first word. You must be so proud

I'm sorry I've not been around girls, Thomas has a respiratory infection when he passed onto me and he's been really unwell since Sunday. He's stopped running a fever now but is coughing loads, very congested, refuses to eat and isn't drinking very much. He spends most of the days asleep... which is a complete change from usual and I don't like it. To top it off I've just broke out in a coldsore!! We missed his portage and speech therapy and his very important audiology appointment

If I don't get a chance to say this before the day, Merry Christmas to you all from my family to yous, I hope you all have a wonderful time together and receive wonderful gifts Thank you all for the support xx

 

[essie0828]

Merry Christmas! Happy Holidays!



Sequeena hope T gets better so very soon Hope he is in form to enjoy his new presents!

Bumpin I'm thinking G has a baby brother in there Hope the gender reveal is awesome and you get a very lovely Christmas surprise.

Aliss hope your holiday rocks!

Rach Merry Christmas hun.

And everyone else I missed because I totally suck at remembering screen names....... and Merry Christmas/ Happy Holidays hope your families are safe and well.

 

[essie0828]

Well it seems that some of the things we got DD for Christmas require an engineering degree to assemble. "Some assembly required" my ass. Seems to me the only thing I'm not doing is moulding the plastic!

 

[sequeena]

We've not started assembling yet. I say we I mean OH obviously He has a wooden kitchen and a wooden push along toy box to assemble... and that's before Thomas opens his wooden garage and other bits

Thomas is slowly getting there thanks. He's not got a fever anymore and hasn't for 2 days. He's not been sick again. He is drinking a little more but he still won't eat I can feel that he's lost loads of weight. He wasn't a big boy anyway and always had his ribs and spine sticking out but now he just looks... well malnourished. He's still congested (it's disgusting honestly poor boy ) and he has a terrible cough. He's sleeping loads though (and won't use the dummy so I hope we are now FREE of it as I've stopped offering it). Last night he even started playing with some toys so I know he'll be ok for Christmas.

We got Thomas' speech therapy report today. I'm encouraged by what it says. Also, he's at the top of the list for physio so I just have to ring and make an appointment.

Objectives
- Support parents and carers in developing their child's language and social communication skills
- Develop early attention and listening skills
- Develop early social interaction skills of looking and taking turns and choosing
- Develop understanding at 1-2 word level
- Develop vocabulary of early words and signs

Outcomes
- Thomas was eager to participate in all group activities. Though he could be quite distracted he is easily re-directed to the activity at hand and generally appears to 'want' to attend to the activity but his attention and listening skills are not yet sufficiently developed to support this.
- Thomas enjoyed large doll play, though he was noted to struggle to complete an inset puzzle (to be fair he's only just learned how to do them and it was one he hadn't seen and he didn't have the luxury of playing with it several times by himself!
- Thomas is a very social child who showed great interest in the other group members. He found waiting for his turn somewhat challenging but was not distressed when the therapist or his mother indicated that it was another child's turn. Thomas is also able to indicate his choice between two objects by pointing.
- Thomas' ability to follow one key word level instructions is developing. He appears to find it easier to identify named pictures as objects or toys can distract him.
- Thomas was not heard to use any spoken words during the sessions. Instead he communicated using gesture and facial expression. By the last session Thomas was observed to use the signalong sign for 'more' independently.

Recommendations
- Further therapy

Thomas is a social child who participated fully in all sessions. His file will bereturned to his referring therapist on the PSSN team for further input.

Thomas would benefit from adults in his environment using gesture and modified sign to support his communication I'm just about to pay £50 for a 10 week course in sing and sign

 

[essie0828]

That sounds so very encouraging sequeena. Signing has been the best thing to happen to us. DD has 3 consistent signs now and its so amazing how she's communicating with them. Love it! We didn't take a course but the speech therapists have left lovely handouts and showed us new signs. We're working on "help", "play", and "open" for now. It took some getting used to for me but it's well worth learning. HA! We got DD a kitchen as well and it's a terrible headache to put together. I'm not even going to attempt the princess truck or the y pewi bike Making OH do those as wheels are "his thing". DD has been poorly as well, just had her to the doc yesterday for a terrible cough. Its horrible when they won't eat. All you can do is keep trying calorie rich drinks and foods he usually likes. Swallowing all that mucus makes it hard to have an appetite, I've been chasing DD around with rich milkshakes and cool juicy fruits. Still shes lost a pound in a week....for a tall thin girl thats a lot. It's worrisome. Pedia Sure milkshakes are good, although those may be an American thing... they are fortified and can be used as complete nutrition if he refuses solids.

 

[sequeena]

The only thing he will have right now is diluted high juice and manuka honey for his sore throat he's always been the same though once he's ill he won't eat anything and drops about 2lbs Poor hayley how is her cough now?

Apparently this 10 week course will teach around 150 signs I don't think Thomas will get anywhere near close to that number but anything will help AND it's extra socialisation for him!

 

[essie0828]

Lol. I was thinking it was a class for you and not T That will be perfect for him. Putting signs with songs and play sounds like a fun learning experience. You may be surprised at what he learns. What's high juice? DD is a milk lover, it's a struggle to get her to drink juice. Weird huh?

 

[essie0828]

Sequeena DD's neurologist and developmental pediatrician both told me the more the better when it comes to therapy and learning experience for developmentally delayed kids. They encouraged me to get DD into as much activity as she can stand. I think what you are doing with T is exactly that. Wtg mum!

 

[sequeena]

Thanks hun it means a lot, it's hard getting T to interact with other kids he loves them, they're not interested.

High juice is this, I'm not sure you have this. We call it squash here but squash usually has aspartame in it. This doesn't. You dilute a small amount with water. 1 bottle lasts well over a month. He refuses milk now.

https://img.tesco.com/Groceries/pi/182%5C5018374175182%5CIDShot_225x225.jpg

 

[essie0828]

She's still coughing but no fever. Doc says wait and see. She's never had a chest cold before and she has low tone when it comes to her breathing muscles. Worries me she can't clear her chest as well as she needs. Doc says she's doing well so far and praised me for encouraging her to continue breathing exercises. Blowing through noise makers, straws, panting like the dog, anything to get her lungs working hard. All that is stuff we do for speech therapy anyway but evidently it helps with illness.

 

[essie0828]

Lol. I've never had it but I got thirsty looking at that bottle If it won't cause him an upset stomach I say up the strength a little so he's getting extra calories. Ummmm. Gimme a sec, there are juice boxes made over here that have protein and vitamins and they are pretty high calorie. I'm thinking they can be ordered from anywhere. DD hates juice and will actually drink one of these on occasion.