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

[Vampire Mom]

Heh, Hannelore calls her tablet Bear. But she likes her apps.

For speech - she has to have visual learning also. Her brain just can't learn on strictly auditory learning. Thus, tablet. She's really good at mimicking me however. Which gets hilarious on V sounds because I still have my accent. Or because I have a bad potty mouth.

Applied for a seizure and physical assistance dog. It can take a long time, and it's believed she'll need one come school. I know all these are good for her. I know she needs this. But I still feel like we're giving up on her gaining skills.

 

[Peanut78]

Hi All,

Rach - I totally hear you on the homework thing and the party

Vampire Mom - I loooove the name Hannelore so much!

T also loves playing games on the ipad. We've been considering getting him the communication tools app as well to use in school. It's not cheap for for something to trial tho

We arrives in Kenya last week and had our meeting with the speech and occupational therapists yesterday. I'm already feeling much more confident about the set-up here. T's school is really small and intimate - the teaching staff are keen to find out how to best support T. We plan on getting a qualified special needs teacher who can support T in school a few days a week.

 

[RachA]

Peanut-it helps so much when you feel that the people around you are committed to helping your child as much as you are

 

[annanouska]

Rach do u find it hard that e doesn't have a diagnosis as such? I'm findi g it so hard trying to explain his troubles but that nothing is yet confirmed. He's got so excited in sign group today the lady had to help get him off as he was pulling my hair so hard. We see consultant in a few weeks but its more epilepsym his general review has no date yet x

 

[Peanut78]

Rach do u find it hard that e doesn't have a diagnosis as such? I'm findi g it so hard trying to explain his troubles but that nothing is yet confirmed. He's got so excited in sign group today the lady had to help get him off as he was pulling my hair so hard. We see consultant in a few weeks but its more epilepsym his general review has no date yet x

Rach, actually I meant to ask you - are E's issues only speech related or also for wider motor skills - sometimes our two sound quite similar.

 

[lindblum]

RachA - My kid is nearly 7 and she still cannot recite the alphabet or sing the abc song. She gets lost after abcde and then goes into 'ffgcd' and other random letters. She can read pretty well though (reading stage 4), she recognises and can sound out all the letters, write and spell quite good. I hope you don't let it get you down x

 

[RachA]

Rach do u find it hard that e doesn't have a diagnosis as such? I'm findi g it so hard trying to explain his troubles but that nothing is yet confirmed. He's got so excited in sign group today the lady had to help get him off as he was pulling my hair so hard. We see consultant in a few weeks but its more epilepsym his general review has no date yet x

Yeah it is hard at times. Usually when trying to explain to someone what's the matter with her. So many people have explanations which don't work because they hear speech problems and think I'm saying she's shy or can talk but can't form the words etc. thankfully I had an amazing member of staff at her preschool who pushed and explained for me.

Rach do u find it hard that e doesn't have a diagnosis as such? I'm findi g it so hard trying to explain his troubles but that nothing is yet confirmed. He's got so excited in sign group today the lady had to help get him off as he was pulling my hair so hard. We see consultant in a few weeks but its more epilepsym his general review has no date yet x

Rach, actually I meant to ask you - are E's issues only speech related or also for wider motor skills - sometimes our two sound quite similar.

It's mostly speech related. At her last review her speech/language was 18 months behind. Her social skills and motor skills are about 12 months behind. Her social skills being behind are really a direct concequence to her lack of talking. Motor skills level-she can draw and line and circle and she really tries to colour in the lines but fails totally; she can peddle a trike but not a bike with stabilisers; she can jump but chooses not to! But she can climb amazingly and dies jigsaws like a pro!
I know-it's funny how similar they are. Most people I come across have additional issues to the speech so it's hard to relate sometimes.

RachA - My kid is nearly 7 and she still cannot recite the alphabet or sing the abc song. She gets lost after abcde and then goes into 'ffgcd' and other random letters. She can read pretty well though (reading stage 4), she recognises and can sound out all the letters, write and spell quite good. I hope you don't let it get you down x

Thank you-that's encouraging

 

[annanouska]

it can be hard relating and u think it makes you feel pretty crappy then

I'm 99.9% certain m falls on the spectrum but its still a waiting game. I feel this seeming echolalia, the compulsion to order and line up, certain repetitive behaviours, the sensory processing disorder, preference to alienate himself at nursery etc its all too much to just be a language disorder, not even a delay

Sadly tho I think he got the need to be generally a square peg in a round world from me! He's always been a bit u usual,he is brick from "the middle,".

He fell at the pool Sunday, blue lights to a and e, knocked himself out and cut his head open. He's recovering well but got a massive egg lump still. They glued his head and steri strips. It's at the back of the head so covered by his hair it wasn't nice seeing so much blood tho it was quite horrific. I felt awful as he had to be rushed though the poolside his least favourite experience x

 

[sara15h1986]

Hi all.

Just thought if interest myself.

I have a son who is 13 months old who is currently going through genetic testing for noonan syndrome.
He isn't crawling but can drag himself around.
He also can't sit himself up

I find it all very overwhelming and just really sad

 

[annanouska]

glad u found your way over Sarah. The ladies here are really kind and I'm certain there's a couple on this thread with noonan children

It's good news he is dragging himself about as he is working those muscles and getting stronger. I think it is a horrible journey dealing with an additional needs child but you meet the most amazing genuine people and you really learn to appreciate your child in a different way. It felt like m had run a marathon to me when he walked x

 

[nicki01]

Welcome sara.
I completely agree some lovely people on here and even going to my appointments I've met some real genuine kind hearted people.
I think having a child with needs changes you as a person for the better, as hard and horrible it can be, you certainly become stronger.

 

[sequeena]

Welcome Sara it's a tough journey to be on but we're very kind here and try to help however we can.

Sorry I've not been around lately. Thomas is refusing to sleep until 3am every night and I think because I'm so exhausted I've come down with a virus and it's kicking my arse.

I've had to pull Thomas out of his nursery which I was so upset about but they're keeping his place (I won't have to pay) until after Christmas. We're going to do the sleep clinic (starts 7th November) and if that doesn't work onto melatonin. I spoke to my aunt and she will be able to drop us to nursery which will be a big help. It just depends on if we can get his sleep under control.

He has a new 'thing' and I don't know what to think of it. He's started curling himself up on his knees and just stares at the floor/bed/sofa whatever surface he's on. He will stay in this position for various lengths of time - the longest I've seen him do it is for half an hour. He's not upset or tired he will just do it 'because'. Is this a sensory thing I've not seen before?? Anyone else's child do this? I'm finding it a little weird TBH.

 

[sequeena]

This is what he does

 

[alibaba24]

I don't know what it is but I remember doing that as a child. I grew out of it x

 

[annanouska]

Shutdown or resting? Marcus sleeps like that and will also do it to sort of rest and calm down a bit. Could it be a retreat thing, eg sensory overload so shuts down for a bit to cope?

Fingers crossed for the sleep clinic. We've gone backwards, the meds had helped and he was sleeping g well last night up at 3 for the day.managed to get him back Down but had to repeat the whole bedtime routine story lights out etc then he accepted it was bed.

X

 

[Thurinius]

Not having a good morning. We've been told it's likely my son is on the autistic spectrum. Have spent all morning crying. Keep thinking back and wondering whether things we did caused this. I had such a long horrible labour, 88 hours, followed by an emergency c section. My son was in neonatal for a few days. When I got him home, I would not go so far to say I had postnatal depression but I was very down and didn't bond with him. I can remember just wanting my husband to take him away. The when I'd bee. Home only 2 weeks our landlord decided he wanted us out.
My poor sons first few months were full of stress and anxiety and I think he must have picked up on that. I don't know could that cause autism? I know. boost knows what does.

 

[nicki01]

Thurinius, I know your in a bad place right now but autism isn't the end of the world. While its alot to take in and quite a kick in the teeth you will adjust and it will get easier to accept.
My daughter is autistic and its coming up a year since she was diagnosed.
What helped me was to get my thinking straight....
Today is no different to yesterday, last week, last month. You just have a word, an explanation for your sons 'different quirky ways'. That's the only thing that has changed. Your son is still your son, he will still be happy funny etc
Having that diagnosis doesn't change anything about your son, if he has been diagnosed then he has always been autistic, the only change will be for the better, you can get help and support in the areas he has been struggling in.
You have in no way caused him to be autistic, there is nothing you could have done.
Please don't beat your self up about it.
Give him a big cuddle and think back, he was autistic when you cuddled him last week, you just didn't know!

Hope that gives you some thing to think about, I know its hard, really hard to take but there is so many autistic children out there, your son will be just fine

 

[RachA]

Thurinius, I know your in a bad place right now but autism isn't the end of the world. While its alot to take in and quite a kick in the teeth you will adjust and it will get easier to accept.
My daughter is autistic and its coming up a year since she was diagnosed.
What helped me was to get my thinking straight....
Today is no different to yesterday, last week, last month. You just have a word, an explanation for your sons 'different quirky ways'. That's the only thing that has changed. Your son is still your son, he will still be happy funny etc
Having that diagnosis doesn't change anything about your son, if he has been diagnosed then he has always been autistic, the only change will be for the better, you can get help and support in the areas he has been struggling in.
You have in no way caused him to be autistic, there is nothing you could have done.
Please don't beat your self up about it.
Give him a big cuddle and think back, he was autistic when you cuddled him last week, you just didn't know!

Hope that gives you some thing to think about, I know its hard, really hard to take but there is so many autistic children out there, your son will be just fine

Thats a really nice way of putting it

 

[annanouska]

I kno u have been struggling with this a while from your other posts

You haven't caused his autism at all, don't go raking up all that o,d stress it won't help

As Nikki said, your son is still your son. No different, nothing has changed just an explanation for challenges and quirks he may have.

We don't have a diagnosis yet he's not quite 2 1/2 but he has been diagnosed with epilepsy sensory processing disorder and language disorder so far. He does display many traits and I now tend to refer to him as having ASD when ppl ask as they find that easie to get than sensory processing and the rest!

I was struggling a little at first but I just get the odd wobble now. Autism is such a huge spectrum and people tend t oly know about the worst bits.

Go and have a look at temple grandin she will be a huge inspiration that u and your son can do this

"“In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.”
― Temple Grandin, Thinking in Pictures, Expanded Edition: My Life with Autism

I am different, not less.”
― Temple Grandin

Xxx

 

[Thurinius]

Thank you all. Just had a wobbly morning,,I'm recovering from flu so think I'm probably just a bit down.
Today my lovely autistic son played alphablocks on the iPad and got all the answers right. Spent most the day insisting it was teatime and went down the big curly slide at the playground for the first time. Positives all round.