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

[Thurinius]

Yip I no where you ladies are coming from pretty much same here with having to watch my son when we're out like that. Last experience was at soft play when he let's me no he needs a pee by dropping his bottoms no mistaking the message eh.xx

We had this at playbarn this morning. My son told me he needed the toilet so I went to fetch his little brother to come with us. I return to find a bare bummed son striding to the loo and his discarded pants and shorts on the floor!

Saw several Mums smiling.

Not sure why he's started doing this because he never used to.
Really don't want him doing it when he starts school in September

 

[sequeena]

Oh bless him!!! That is cute but yes not something to be encouraged.

How is everyone?

Thomas graduated his pre school group on Wednesday. I am gutted I can't believe he is going to school in less than 2 months.

We have an information exchange meeting with his school on monday then a nappy assessment on the 20th.

Haven't heard anything about jis EEG yet which is no surprise. I hope I hear before We move I'm not entirely sure who I should ring to change our address.

 

[Reid]

My son's nursery told me he uses the picture cards to tell them when he needs the toilet I was uo there last week for a catch up was hoping to talk to his salt but she wasn't in till later so will give her a phone and see if I can get a catch up with her. Aww graduation already my little man has another year at his nursery and next month he'll be going 4 days a week instead of his current 2. Well need to see how he gets on with his speech and understanding before we talk schools.
Is your thomas going to a specialist school or mainstream? Xx

 

[sequeena]

Ah that's fab lynne. His pre school workers tried very hard to use pecs with him but he isn't interested he is a signer x

He is going to a special needs unit within a mainstream school

 

[Thurinius]

Can't believe my boy starts school in September. We haven't heard anything yet about how they are going to support him. But there is an open evening so I'm going to raise it then I think. He's been recommended one to one help but we shall see.
I worry because he's quite a placid little fellow and I can imagine the school prioritising those kids with more behavioural issues. But if left on his own my son doesn't have the capacity to learn much, he needs directing (unless it's numbers and letters which he is absolutely fascinated with!)

 

[sequeena]

Can you apply for an EHCP? It took about 7 months for Thomas' to complete though.

 

[Thurinius]

Can you apply for an EHCP? It took about 7 months for Thomas' to complete though.

What's an EHCP?

 

[sequeena]

Can you apply for an EHCP? It took about 7 months for Thomas' to complete though.

What's an EHCP?

I'm not sure where you live.... in the UK we have an educational health care plan formerly called a statement. It is a legal document outlining what issues the child has and what the school has to do to accomodate the child and make sure they are safe and able to learn.

 

[Thurinius]

I'm in the UK. Nobody has mentioned anything about a statement yet to us, we only got the official diagnosis In May though. Who initiates that? Is it the health visitor or,the school?

 

[sequeena]

I'm in the UK. Nobody has mentioned anything about a statement yet to us, we only got the official diagnosis In May though. Who initiates that? Is it the health visitor or,the school?

My son's paediatrician referred him but you can self referred through the council. Give your lea a ring and ask, they usually come under the child disability team.

 

[sequeena]

Schools can do it too

 

[Aidan's Mummy]

Hi guys I wondered how you al got doctors to listen to you?

Since Oliver was a baby I have noticed differences in his development. I am a pre school teacher so I knew something was 'right'. Anyway he has seen a paediatrician who says nothing is wrong BUT I am still concerned. He saw SALT who said he was behind in speech but have heard nothing since, he was referred to a family support service but heard nothing. Recently he has started arm flapping, he screams very high pitched when he is excited, he slaps and pinches himself, he has to have a set routine and if something is going to happen he needs a warning otherwise he will have a melt down. But because none of the doctors or health professional have seen this during a 1/2 appointment they deem him as being ok? I am just getting very frustrated and confused as to where to turn next?
Thanks in advance x

 

[alibaba24]

Just keep a note of everything and where possible film his behavior which concerns you then take it back to the pead. I had to go and insist on a referal for the child development clinic we get 6 monthly reviews currently DD is having bloodwork etc to rule out medical causes for her difficult ies

 

[Reid]

Schools can do it too

Thanx for sharing that it's good to no. My son's nursery said they would have a meeting with me to discuss possible schools in September so I will keep note of this and ask about it then. We have the mainstream school 2 seconds up the road and there is a new specialist school getting built just now which is due to open before my son starts school xx

 

[annanouska]

nothing exciting to report here. It's all bad news....his walking has deteriorated but his new insoles are helping, seizures have gone a bit wonky and he's been generally aggressive things have been a bit better today after a horrible set of seizures he seems much more calm and happier. We have the appoint,net for the geneticist in October and that's about it. His speech is much better. It he can not communicate at all even sign with ppl he isn't familiar with he just locks right down. I'm slowly accepting that his "condition" so far is quite unique and he doesn't fit in a box too well just wish it was something g people, had heard of, maybe genetics will tell us More x

 

[alibaba24]

Hi . we are having genetics too x

 

[Thurinius]

nothing exciting to report here. It's all bad news....his walking has deteriorated but his new insoles are helping, seizures have gone a bit wonky and he's been generally aggressive things have been a bit better today after a horrible set of seizures he seems much more calm and happier. We have the appoint,net for the geneticist in October and that's about it. His speech is much better. It he can not communicate at all even sign with ppl he isn't familiar with he just locks right down. I'm slowly accepting that his "condition" so far is quite unique and he doesn't fit in a box too well just wish it was something g people, had heard of, maybe genetics will tell us More x

Sorry to hear you're not having such a good time. Hugs to you.

I went to meet my son's new teacher and she was lovely. And, huzzah they have applied for funding to get a one to one helper for him. I got the impression that they don't think they'll get one full time but they are already planning to use the hours by maybe letting my son have some quiet time away from the main class.

And when I expressed my concerns re him having school lunches to took me to the canteen to talk me through the whole process. I explained he has difficulty waiting for food and that can cause a melt down and she instantly came back with a suggestion that he go in five minutes earlier with his helper to give him time to get his lunch in the quiet before the rest of the class came in.

Feel very reassured and very happy. The overall impression I got was that she and everyone else just wanted to do the best for my son and do whatever was necessary to help him manage.

 

[sequeena]

Thurinius that is fab about your son's school I'm really pleased

Annanouska sorry to hear about Marcus thank you for tbe sticker btw it arrived today xx

 

[Starry Night]

anna -

aidan's mommy - good luck in getting help for Oliver. I didn't have the professionals ignore me but I certainly had everyone in my personal life (including DH) dismiss my concerns as paranoia. I still get it and he has an official diagnosis now! It's frustrating from friends so I can only imagine how it feels to be dismissed by professionals. You know your son best.

Thurinius - sounds like the school is trying their best to be accommodating. And that in itself is so awesome even if they can't do everything. As long as they keep their word!

afm - haven't been on this site in awhile. I'm visiting family for several weeks in my old province. It's bit of a long visit and am starting to get a homesick little boy. DH flies out to join us tomorrow so I hope that helps! Also feels like my son (who just turned 4) is just now hitting "The Terrible Twos". All the mommy blogs and friends complaining about toddlers is finally making sense. But with DS being on the social level of a one/two year old and my DD having just turned 1 it is possible both my kids will go through the Terrible Twos at the same time.

My kids' doctor did warn me that I'll start to see an increased difference between my DD and DS. In one way, it's nice to see that it looks like DD doesn't have autism as well, on the other hand it's hard to watch the younger surpass the elder. My DD is 13 months and is picking up language SO quickly and it's such a struggle for my son.

 

[mummy2lissy]

Hi all, not sure if this is the best place to post as I'm new to this forum! I'm just after abit of advice, usual stuff....can things change? How do I get dad to understand? Is there a diagnosis at the end?...here's abit on our background.

William is coming up to 19 months. He is a twin, hes twin 1!
Archie (twin2) his brother has sailed through most development milestones, he's now walking, talking, singing along to songs, playing etc and the general interaction.
From around 4 months I knew something wasn't 'quite right' with William. He couldn't sit, wave, clap etc. I expressed concerns to my hv at around 7 months when he wasn't sitting and she made a referral to development.
When we had our first appointment a week after his 1st birthday he still wasn't quite sitting unaided. He could do a comando crawl and wasn't pulling himself to stand. The paediatrian said it looked like he had a mild development delay and would see him again 6 months later.
Within this time William has began to crawl properly and pull to stand. He has stopped babbling but he can now clap and wave but doesn't point or communicqte. (3 days ago he took 2 steps!!) He has also had staring episodes where he just daydreams in the middle of playing then some time after snaps out of it. He plays by throwing toys or mixing them round in a box, he seeks sensory activities, plays alone and has no interest in his brother.
Anyway last month we saw his Dr again for his next appointment and he did a series of tests etc and the outcome was that he has poor muscle tone in all limbs and that they very concerned about what they'd seen. There was no mention of conditions etc just their concern.

A referral was made to SALT for a feeding assessment as he picks bits out of food and never clears his mouth. His weight is on the 9th centile. He has been referred for a longer assessment at our development centre.

SALT came last week and following his feedING assessment and the developmentshe saw, she has put him back to 9 months and added thickener to his drink while we wait for a videofluoscopy for his drinking issues (wet sounding and bubbles after drinks)
She saw his movements and went on to make a referral to OT.
Whilst she was here he had one of his 'absences' and became really hyper afterwards.

I received paperwork through for his assessment and it will start in November and last 6 weeks, in the meantime SALT will still be visiting along with a specialist hv and then OT.
Things seem to be moving along and lots of people getting involed, it's so overwhelming.

But...we don't seem to be finding any answers and I don't like the unknown! Everyone is expressing their concern or saying 'special needs', 'additional needs' but we keep hitting walls!

Has anyone been through or seen something similar and does have a diagnosis?

I know these things tend to be a waiting game but I don't wait very well! Lol

Sorry for the long post and thankyou if you made it to the end!!

Gemma x