Something not right

[bitsnbobs]

Since my Ds1 was born I have always felt that he is "different". When he was a baby he cried nonstop and hated being touched, baby massage etc.

As a toddler he was very quiet and reached most of the development milestones late. I spoke to my HV and they got Portage involved. He was assessed and she wanted me to refer him to a school psychologist which would have meant he could have ended up going to a special school. At this point his speech was coming on a lot more and I felt they underestimated how much he could do and so I refused the assessment.

Anyway, 3 years later and I am having worries again. His speech is okay but with a stammer and his teacher says he is behind with his work so he has been given an individual eduacation plan relating to special needs.
Socially he is very confident but he will talk to a classmate and talk about an irrelevant subject or he doesn't "get" the gist of what people are saying. This has caused some of the other children to not play with him anymore and the teacher told me he does this in class when asked a question. If we go to a park he will shadow another child and will say exactly what is on his mind even if it is rude like he has no clue what you should and shouldn't say. They usually run off and he just follows them! He doesn't pick up on social cues unless he is told bluntly.

If I tell him off for something at home like hitting his brother he will apologise profusely and cry and then half an hour later do it again. Its like he genuinely cannot control his impulses.

Any advice please

[needmorecoffee]

Can you get another full assessment?

[dustyFIREstarTER]

I agree with NMC.

[pagwatch]

bitsnbobs
AS you have already been offered an assessment please go back and ask again.
and please don't back out of finding out if something is a problem here because "he could end up going to a special school".
Special schools are extrememly expensive and actually very difficult to get your child into - even if it is glaringly obvious that they need it.
Trust me.
Go back to your HV and get the ball rolling again

[bitsnbobs]

I am scared to go back to the HV after last time. What would an assessment entail and what could be the outcome? Could they take him out of his present school?

Does it sound like he has something wrong with him or is he just behind developmentally? I am so confused at the mo!

[needmorecoffee]

Firstly, even if he has a problem he can stay at mainstream if thats what you want and be supported there.
From your deescription its impossible to tell if there's something actually wrong. All kids are different. Hopefully, thats what a assessment will do. Plus it willpinpoint whether he needs additional support at school and what this support should be. Its a pathway to therapies too such as speech and language therapy.
If you still see a HV, ask her for a referral. But don't worry they will suddenly whisk him out of school.

[dustyFIREstarTER]

Sorry bitnbobs - I've had a horrible afternoon and didn't read your post carefully enough.

Please go ahead with the assessment. Its the first step to getting your child the help he needs. Very few children end up in special schools and trust me there are not enough places in those schools as it is.

[bitsnbobs]

Thanks, I will make an appointment with the HV and get some advice.

[mm22bys]

We had DS2 "assessed" and I would advise any parent to not go into the process lightly.

We knew he had problems, but did not expect to be told what we were - that at 10 months he is severely developmentally delayed, is special needs, and would need care for the rest of his life. This was before all tests had been carried out, and we don't believe they properly took into account all his medical issues, and the fact that he was / is responding to therapy.

We feel they told us what was wrong (sympomatically, he still doesn't have an official label or diagnosis) but so far any help / support to try to improve the situation even just a little has not been forthcoming. It's like - here's your little boy, who will need help forever, here's your "new" special needs lifestyle (we got a handout on soft play with other special needs children and were told we would feel out of place amongst "normal" parents and their children) and we can't / don't want to help him / have written him off.

I can well and truly understand your reticence to have him assessed.

On a positive note, we have found certain individuals / organisations not attached to the NHS to be really helpful, positive and encouraging. Is that an option for you?

[Peachy]

TBH I'd be very surprised if your son were moved out of mainstream with the level of isues you suspect- DS3 is quite amrked and yet there's no SN school that can take him, so he shall be in MS.

We pulled ds1 out of assessmenta few times before we finally saw it through and got a dx- at various times he seemed far less worrying with his development etc than at toehrs, indeed even with ds3 (who has limited langauge, some learning difficulties and some issues such as incontinence) there are times when he seems more 'able' than others.

I woudl recommend getting abck in the system- its the only way you'll get the answers you need.

[needmorecoffee]

mm2bys - sorry you've had a tough time. We were also told about 10 months that dd would never develop and a whole host of other doom type stuff but despite her very severe CP she is intellectually just fine. I tend to ignore predictions now but take what Ineed from docs and their cohorts. I also used to feel out of place among 'normal' toddlers but now I don't care. dd is dd. She gets stared at, peple assume she is mentally retarded etc but it doesn't stop me doing anything and doesn't stop her learning and developing.
An assessment is a gateway to help (hopefully) not a prediction of outcome or the future.

[mm22bys]

I agree that's how it should be - you have an assessment, you are told what is "wrong", and then you are put in contact with the people who may be able to help. In our case, we only had (have?) steps 1 and 2, with really the most important step being missed out. DS2 is at where he is at. What's more important is what we can do to help achieve whatever is his potential. If the people who do the assessment can't do or help do the most important (even if that means saying they themselves can't help, but so and so organisation / person may be able to) part, then what is the point of all the stress, emotional turmoil, etc, etc, etc?

I am not yet at the stage where you are at. I have avoided social situations with DS2. It is his 1st birthday though in about three weeks, and I think we should celebrate him reaching age 1, especially given all he's been through, and it would be selfish on my part to ignore all the good times, and what he has achieved even despite all his difficulties.

[moondog]

Hmm,sounds to me like he has some high level language difficuties (area know as Semantics/Pragmatics).

A salt could help get to the bottom of this. Ask (nay insist) that HV refers you for assessmnet. (I am a salt)

[needmorecoffee]

mm2bys - it took me a long time and lots of months of angry waiting for useless services. They are still generally crap so I do it myself. Unless I can't. This year an emergency EEG to check for Lennox-Gastaut syndrome (extremely serious) took 6 bloody months. And yes, the slow spike-wave pattern was there and dd could have regressed and started getting seizures and never recovered. Its diabolical, condemning her to that cos the NHS is so useless with severely affected children.
I avoided situations for ages cos dd, even in SN groups was always the worst. I'd be in a CP group and dd was always the only one who had no hand function or couldn't hold her head up so I'd feel jealous of kids with CP! Still get a little soupcon of that now!
You going to have a big birthday for him?

[TotalChaos]

maybe just look for a speech therapy assessment now, rather than full assessment? then depending on what the speech therapist and how things pan out, then decide whethre to look for the full assessment.

mm22bys - sorry you have had such a rotten time and so little concrete help from the NHS.

[PeachyCosmicExplosion]

I would definitely look into the SALT- ds1 has semantic pragmatic disorder (as part of a few things) and has slowly seemed to be giving up talking outside the house except to a few people he has known yeras, as he find it takes too much effort. Well worth getting things in place imo.

[pagwatch]

I had almost exactly the same thing "he is severely autistic - take him home and good luck" but I still don't for a second regret the assessment process.
It took me only a matter of weeks to realise that the support does not swoop in ( in fact it is slightly worse than useless) but once i was armed with a diagnosis I was able to go away and find for myself the resources and support my son needed.
I found out about the gluten and dairy free diet which has changed his life completely. I got DLA for him and used that money to get a thearpist to come in once a week and help him. And i traced a nursey that was perfect for his needs and moved county so he could go there.
Most importantly once I understood the areas in which he was having difficulty I was able to parent him 100% better and help him myself.
I don't give a shit if the NHS writes him off. They are not important. Like needmorecoffeee I go to them when i need something but I have 'treated' DS on my own and his improvement MASSIVELY outweighs his peers who have waited for the NHS to offer services.
I am completely aware that not everyone is in the postion to go out and do this stuffthemselves - that is not what I maen. I am just saying that once you know what you are dealing with YOU are empowered to help your child the best that your circumstances permit. And for me that is far more important than the possibility that someone somewhere has labelled them.

I hope this post isn't shouty but the crap services offered to our kids makes me cross and knowing what we are dealing is the first stage for most of us in realising the sad truth that we are mostly on our own in our fight to help our kids. I regret every day that I waited on others to help me and thank god the light switched on as quickly as it did.

[bitsnbobs]

Ds was referred for speech therapy but refused to speak as he was so shy! I sat in on one of the classes and the man doing the session kept referring to a trainee with him about the children like they were animals so I never went again! A friends son carried on for another two sessions and then they cut the programme. Then we had various hearing tests which again proved fruitless, it just involved someone standing behing ds and saying things at different volumes. Everytime he has had any test on his speech/hearing he just clams up and refuses to talk, the same as if he is going to the Drs so they don't get a good idea of what he is like on a daily basis and this is why I am worried of getting involved again.

The portage lady was very nice and Ds liked the activities we did but she referred us to activities which were with children who had much more severe special needs.

The salt sounds interesting. Can I only find out about this through my HV?

Have also found out since doing this post that 6 other children in ds's class are being given the same s.n education plan!
I spoke to ds teacher and she said I could speak to the SENCO woman who comes to the school so I think I will arrange to see her.

[moondog]

Yes bits.Ask HV about salt.
Someplaces let you self refer.

I will link you to our professional body also two very well known and respected parents charities for children with communication difficulties.

[moondog]

Royal College of Speech and Language Therapists

[moondog]

AFASIC

[moondog]

ICAN

[bitsnbobs]

Thanks v.much