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

[sequeena]

Found out today that if I get a medical professional (HV, pediatrician etc) to refer Thomas to the wheelchair services in Cardiff we can get a disability pushchair. So we don't need to go through OT at all (though T still needs to see an OT). FFS I wish I'd been told sooner I've been waiting since November!!!

 

[emyandpotato]

Sequeena I'm so sorry about the report. What's a GQ centile? Sorry to sound dumb! Wonderful news about the pushchair though- well that you know now at least- will it make a big difference for him?

Yes he has a nursery place to help with his speech, and it had actually helped as since September he has said mama, dada, joo (juice), bo (no), and a few other things so huge improvement. HV actually marked his speech at 12 months today which is way higher than I would have expected, though I do think she was generous as he has sign language. I've not heard of Portage, is it a private thing or on the NHS?

 

[sequeena]

A GQ centile is basically a.centile for development. T is <1st so he's be the most severely delayed in a group of 100 children (or however a centile works).

Portage is NHS. I'm in Wales so it may only be available here I'll google it now x

eta yes it'll make a massive difference he cant walk far because of his hypermobility and hypotonia and he is almost out of a normal pushchair. He's just too tall. We cant afford another so this is our only option and its likely he'll rely on a pushchair for years so this is the best way to go

 

[sequeena]

Here you go xx

https://www.portage.org.uk/

 

[emyandpotato]

Thanks hun xx

I can't believe you haven't gotten a special needs pushchair earlier, that's disgraceful! So glad you're getting one now

 

[essie0828]

Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.

Awesome news! We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure.

 

[essie0828]

Sequeena glad to hear you are getting a new pushchair for T. Sucks that you've been waiting so long. I'm in a similar situation with DD now that we may be having another kiddo. I usually just pack her if she tuckers out but that may become impossible. And she's so tall that finding a good fit will be hard. She's 36inches already

Its been a big week for us. DD took 14 independant steps during physical therapy Wednesday. She was very pleased with herself and me and her dad cried. Ugh big babies we are Thursday she turned 2 and again I cried like a baby She made out like a bandit in the gifts department and got to eat more sugar than any child should. We were up till 2am because of that And today we saw little bean with a flickering HB I'm too worked up to sleep even though DD and DH are snoring away. I will pay for it tomorrow but for now its nice to be too excited to sleep

 

[bumpin2012]

Sequeena: Yay! Glad your getting a good push chair for T!

Essie: 14 steps! She'll be on her way soon (and into more trouble than you can dream)

Congrats on that tiny heartbeat... so glad to have some preggo company!

 

[sequeena]

Ah I love your post essie it's cheered me up well done Hayley. She's coming on so fast now!!

Nightmare day. Thomas' ankle gave out whilst we were out and he smashed the back of his head on a metal window frame. He's dented his skull a bit and bled under the skin. 2 hours in A&E and he's OK but OMG what a panic he's sleeping now he's exhausted. Just further proves we desperately need this pushchair... I am in bits thinking when his joints will give out next.

 

[Tiff]

That's how I understood percentiles to work too. Whatever percentile they're at, that was on par with the 100 or so other kids who took whatever the same thing that T did.

So if he ranked 1, that means 99 of the other kiddos did better at it than he did. Its such a kick in the teeth eh? Claire was listed like that as well, and it broke my heart. There's so many people who tell you that it "doesn't matter" and that they'll do well and you'll help them etc etc... but if I'm honest that didn't overly help me.

Of course she's going to do well, I wouldn't have it any other way. Sometimes though, just the validation of someone saying "you know, that really does suck and I'm sorry you have to go through that" means a lot more.

That's just me though!

Sorry about the wait for the wheelchair. How annoying!

 

[sequeena]

Tiff you've written what I feel. I want people to acknowledge our struggles. We deal with a lot and its hard. There's only so much oh he's fine that I can take.

 

[emyandpotato]

Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.

Awesome news! We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure.

What is it like? I have no idea what SALT is or does really!

 

[emyandpotato]

Sequeena glad to hear you are getting a new pushchair for T. Sucks that you've been waiting so long. I'm in a similar situation with DD now that we may be having another kiddo. I usually just pack her if she tuckers out but that may become impossible. And she's so tall that finding a good fit will be hard. She's 36inches already

Its been a big week for us. DD took 14 independant steps during physical therapy Wednesday. She was very pleased with herself and me and her dad cried. Ugh big babies we are Thursday she turned 2 and again I cried like a baby She made out like a bandit in the gifts department and got to eat more sugar than any child should. We were up till 2am because of that And today we saw little bean with a flickering HB I'm too worked up to sleep even though DD and DH are snoring away. I will pay for it tomorrow but for now its nice to be too excited to sleep

That's so wonderful! Are they her first steps?

 

[emyandpotato]

That's how I understood percentiles to work too. Whatever percentile they're at, that was on par with the 100 or so other kids who took whatever the same thing that T did.

So if he ranked 1, that means 99 of the other kiddos did better at it than he did. Its such a kick in the teeth eh? Claire was listed like that as well, and it broke my heart. There's so many people who tell you that it "doesn't matter" and that they'll do well and you'll help them etc etc... but if I'm honest that didn't overly help me.

Of course she's going to do well, I wouldn't have it any other way. Sometimes though, just the validation of someone saying "you know, that really does suck and I'm sorry you have to go through that" means a lot more.

I agree. I know Rory isn't in a wheelchair or anything so I can't really complain, but sometimes when you're so worried that they can do nothing that others their age can do you feel like you can't complain because people will think you don't adore them, or that they're not good enough, but of course it's not that it's just sometimes you're so desperate to experience everything and not worry and not feel guilt when you hear about the 'clever' little boys and girls walking/talking/driving at six months. It's so silly but it's like a kick in the gut when I read threads on the toddler board about children's memories, or funny pronunciations, or singing, cos it's like, will we ever have that? Sorry for my rant, bed time I think

 

[bananabump]

That's how I understood percentiles to work too. Whatever percentile they're at, that was on par with the 100 or so other kids who took whatever the same thing that T did.

So if he ranked 1, that means 99 of the other kiddos did better at it than he did. Its such a kick in there teeth eh? Claire was listed like that as well, and it broke my heart. There's so many people who tell you that it "doesn't matter" and that they'll do well and you'll help them etc etc... but if I'm honest that didn't overly help me.

Of course she's going to do well, I wouldn't have it any other way. Sometimes though, just the validation of someone saying "you know, that really does suck and I'm sorry you have to go through that" means a lot more.

I agree. I know Rory isn't in a wheelchair or anything so I can't really complain, but sometimes when you're so worried that they can do nothing that others their age can do you feel like you can't complain because people will think you don't adore them, or that they're not good enough, but of course it's not that it's just sometimes you're so desperate to experience everything and not worry and not feel guilt when you hear about the 'clever' little boys and girls walking/talking/driving at six months. It's so silly but it's like a kick in the gut when I read threads on the toddler board about children's memories, or funny pronunciations, or singing, cos it's like, will we ever have that? Sorry for my rant, bed time I think

I totally agree Emyandpotato. I don't think my pregnancy hormones are helping at the moment either because everytime I think of Leos struggles I cry. I'm feeling really down about it all at the moment x

 

[Tiff]

I get tired of when people ask about her, and I explain and I get "oh, that's just normal kiddo behaviour" IT ISN'T! And no matter what I say I get that smile and nod, and then I feel like I'm trying to sell my kid out with what she struggles with to make people understand. So I stopped, if they don't understand than that's their issue not mine. Not like they have to live with it daily.

I will say though, she's been LOADS better since we started her on Melatonin. Like a night and day difference! We were actually able to go somewhere last night with her, have her play downstairs with the kiddos when it would have normally been her bedtime and she didn't yell, scream or cry. I've never been able to do that before and definitely not something we'll be making a habit of. But it was a nice change of pace.

I feel like we're shut ins because everyone else who has kiddos can do that and we never were able to. So unless we had people over here while she's asleep we kind of just don't do anything.


I agree too, its so hard to see my child's report card from school which is basically bottom of the barrel and my friend's kiddos who all have glowing report cards. I'm obviously happy for them, their kiddos work hard and they deserve it! But it does kick me in the teeth to see Claire and while I know her report was amazing for her, the fact that I need to add "FOR HER" to it bugs the crap outta me.

 

[sequeena]

I'm just really bitter in general in having to go through this with Thomas. O dread the future to be honest.

 

[essie0828]

Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.

Awesome news! We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure.

What is it like? I have no idea what SALT is or does really!

I'm in the US so our programs may be a little different but it's all very play based. Lots of naming objects like farm animals and making their sounds. Lots of forced choice between 2 or 3 objects, like having a cow figure in one hand and a duck in the other and asking DD to get the duck. When she reaches out, even if she picks the wrong one, we give her the duck and say very animated "duck!" And we do lots of quacking and waddling like a duck. Every choice becomes a game. It's very simple but in 5 months DD's receptive language has expanded to about 50 objects or more. She knows about every farm animal there is because of the toys we use. Also simple books with one object per page and we ask her to point to each object. Like a fish on one page anf monkey on the other we say or sing 'where is monkey?' If she chooses correctly we do a little song and dance as reinforcement. It's also very much about classical conditioning, as in a reward or positive reinforcement the very moment she gets something right. We also do sign language teaching basic ones like "more" and "want". Now the words she learned to sign a few months ago she speaks. Signing and picture choice eventually turns into a language all their own. I love that she can communicate with me about things she likes now.

 

[sequeena]

It's play based here too they also use sign language

 

[emyandpotato]

Rory had his 2 year check this morning and he's finally being referred for speech therapy! And the lovely HV has said that he's eligible for special needs support at nursery but that he should have no problem with starting in September and they can't turn him down because of his delay, which is fantastic.

Awesome news! We love our speech therapy, I think I have as much fun at it as DD. You will like it and your little man will to, I'm sure.

What is it like? I have no idea what SALT is or does really!

I'm in the US so our programs may be a little different but it's all very play based. Lots of naming objects like farm animals and making their sounds. Lots of forced choice between 2 or 3 objects, like having a cow figure in one hand and a duck in the other and asking DD to get the duck. When she reaches out, even if she picks the wrong one, we give her the duck and say very animated "duck!" And we do lots of quacking and waddling like a duck. Every choice becomes a game. It's very simple but in 5 months DD's receptive language has expanded to about 50 objects or more. She knows about every farm animal there is because of the toys we use. Also simple books with one object per page and we ask her to point to each object. Like a fish on one page anf monkey on the other we say or sing 'where is monkey?' If she chooses correctly we do a little song and dance as reinforcement. It's also very much about classical conditioning, as in a reward or positive reinforcement the very moment she gets something right. We also do sign language teaching basic ones like "more" and "want". Now the words she learned to sign a few months ago she speaks. Signing and picture choice eventually turns into a language all their own. I love that she can communicate with me about things she likes now.

I think Rory's may be a little different as he understands so many words- all his animals, shapes, body parts etc- but he really struggles to make the sounds. Verbal apraxia has been thrown about as an idea. I just hope that it's something that can be fixed ASAP as I'd love for him to be able to talk to the other children when he starts at nursery in September because he'd love some friends.