Getting myself so worried about DS1.

[blueteddy]

I hope it is okay to post in the special needs section. My DS1 hasn't been officially labelled with anything yet, but I feel it is only a matter of time.
There have been concerns about DS since nursery days & he has had an IEP from the age of 3.5. He has problems mixing, has several nervous tics, doesn't always seem to grasp what you are saying to him, is very lathargic and has motor & organisation difficulties. School also seem concerned that he has trouble showing his emotions.
He seemed to improve just before leaving nursery & I fooled myself that maybe everything was now going to be okay, but as soon as he started school I was alerted to the fact he wasn't mixing, was lying around in the classroom, would not choose an activity etc.
H & myself were having a very bad time last year and I put a lot of his difficulties down to that - especially as he appeared to make great improvements at the end of the reception year, but a year on & the problems are still there.
He had someone from the social & interaction services in to observe him recently, but nothing much has come of it, as he was having quite a good day.
I know the SENCO at school is thinking down the AS road & I find it all really upsetting.
I have fought against him being labelled for years, but can now see for myself that he is not like the other children. His fine motor skills are very poor & his handwriting is appaulling, he still has trouble with things like getting dressed & putting his coat on, cannot organise himself at all & although his mixing has got better, there are days where you see him walking around the playground alone, or playing in the dirt with no friends around him.
I have had moments of blaming myself as a parent, thinking it all may be due to me not stimulating him enough - but comparring him to DS2 (3) I can see there is something very different about him.
I am so worried about how he will cope with the challanges of year 2 & SATS next year.
I always get myself so upset about him.
I want to know the best way I can help him.

He sounds like he needs to be assessed. Have you spoken to the school? It's best if the assessment is done by a peadiatrician, rather than an ed pscyh. (Clinical psychs can be another option- but a paed is best).

The school have spoken to me loads about him. He has an IEP & is under school action.
They mentioned the school doctor & of course got in this women from the social & interaction services. I think the SENCO assumed this woman was going to come in, watch him & say yes or no to AS - but it didn't work like that.
Would he he assessed outside the school?
I can't see the problems going away.

He is 6 btw.

The poor motor skills, lying around, problems with socialisation etc can sometimes be due to dyspraxia. There is a lot of information about his on the \link{http://www.dyscovery.co.uk/uniform/centre.htm\Dyscovery Centre} website. Also \link{http://www.dyspraxiafoundation.org.uk/\Dyspraxia Foundation}. It would be useful for him to be assessed by an Occupational Therapist in addition to a paed.

Don't blame yourself - it's not your fault. I am sorry that you have this worry.

I really feel for you.
Since ds1 started nursery they have said there is something but they don't know what.
He's on school action + and I have an appointment on wednesday to see the Ed psych,I have no idea what to expect. All they've said at school is that he is well behind the other children in his year.
I go through stages of blaming my self,thinking if only he had been born when he should have been due he'd still be in yr1 and not yr2.
Sorry this turned into a bit of a ramble.

Thanks for that, saker. A lot of the things listed on that website do describe DS1. I have queried dyspraxia, as he was walking down the stairs two feet at a time until recently, was late learning to pedal & steer a bike, has a very short concentration span (teacher says that he is often turned looking at something on the classroom wall etc, when on the carpet) & has terrible trouble dressing & organising himself.
Would these assessments be organised through the school, or should I go to my GP?

Sorry to hear you are having worries with your DS,heavenis. It is so upsetting isn't it?

Do not blame yourself, take this from a past master in beating herself up!!.

With his difficulties he ought to be on School Action Plus (this is one step up from SA) at the very least. Will school move him up a stage?. If not why not?. What's on his IEP - is he meeting his targets?.

Would certainly get a developemental paediatrician on side to assess your son - your GP can refer you to such a person. An appointment with an occupational therapist would also be beneficial - again your GP should refer you.

Another thing to seriously consider re your son's education is getting him a Statement of Special Needs from the LEA. You can as the parent write to the LEA requesting your son is assessed. Would consider doing this asap. Unlike SA and SA plus this is a legally binding document outlining your son's difficulties along with funding for extra support - support that the school cannot provide otherwise.

I wish you well

I'm sorry you are so upset but remember that this is definitely not your fault. You want to feel your child is "normal" and it is hard to accept other people suggesting otherwise and naturally listen to those whose offer reassurance. You can ask your gp to refer him if you find dealing with the school hard but you may get him seen quicker via them.

We have found with ds that his social skills can fluctuate depending how comfortable he is with a situation. He too can be happy on his own, in a small group of friends , or prefer to play with his sister whilst among a larger peer group. He has motor problems but with small focussed group work his handwriting has progressed so much over the past 6 months. He did have OT privately abroad for a year and that helped considerably with many of the practical and organisational problems. We are currently awaiting an assessment to see if he can have OT on NHS.

hth and good luck

I have always been under the impression that statements were really hard to get. (I work as a TA in the school) Not sure why he is SA rather than SA+. I will have a word with the SENCO.
I know he is discussed during school based reviews.
The targets on his IEP are things like: getting him to give eye contact, getting him to try to organise himself eg: get his chair, pick up his pencil etc, without being asked, joining in singing & roleplay (apparantly never does this) & mixing in small groups.
The mixing has got better, but he has off days when he still wanders around alone.
I should be getting tough to all this by now, but as soon as the issues are raised again I get really tearful about him.

Thanks, LIZS. Does your DS have dyspraxia?
He sounds very similar to my DS.

Hi Blue

we're in a similar place with DS, also 6, although he's on every waiting list you can imagine now for assessment. I would say get it moving early.... can take years in some places.

I know what you mean about bad and good days, ds1 can be like that. Sam is also very good with adults (not unusual in AS) so they send in an adult for a chat and he seems fine and .....!!!!!

All I can do is offer a and tell yout hat IPSEA and the National Autistic Society ahve offered us so much even without a DX. There's also BIBIC if you want to go that route, www.bibic.org.uk- I would recommend them

XXX

I think you need to go into school and push for whatever you can get. I think you should contact your gp or health visitor and ask what you should do

it is dreadful watching your child being 'different' and hoping it will go away while knowing inside that it won't. I know very well how hard it is.

involvement of professionals and a diagnosis won't change how your ds is, but it does give you the leverage to get him the help he needs in school, whether that's a support assistant some of the time, or specialist input to achieve his potential

you need to get him as much support and input as you possibly can and not just rely on the school to tell you what he needs; schools can be great but there are others who you need to help you as well

good luck

I actually work at the same school that DS attends, so I can get hold of the SENCO quite easily. I try not to talk about him until after school if I can help it though, as it always gets me very upset.
My HV is aware of his difficulties, but at the moment she is working on ways we can help him as a family. She is visiting us on the 12th June, so I may ask her advice on getting him referred.
It doesn't help when my not very understanding parents come out with the "Don't let them label him, there is nothing wrong with him" line.

blueteddy; imo some grandparents want to bury their heads in the sand and not deal with the difficulties facing their grandchildren, because it's hard

my mil is quite good at this even five years in

it makes it difficult because you want support from them but sometimes they're not capable of giving it; it's not that they are not understanding it's just that it's hard for them too, no-one wants anything to be wrong, and ignoring the possibility of a problem it is one way around it

unless you just have gittish parents

Blueteddy,

Statements can be indeed bloody difficult to get a hold of but not impossible. If you have to apply for one of these documents do not give into pressure!!.

The onus is very much on parents to get the help their child needs. You are your son's best - and only - advocate.

Another poster has mentioned IPSEA - they are very good when it comes to helping families with regards to the educational system.

www.ipsea.org.uk

I am surprised your HV hasn't already arranged a referral: if she's not helpful, go via your GP. But don't wait too long- the earlier AS is dix's, the earlier strategies can be put in place.

i too get very teary and have panic attacks when I have to discuss Sam, I am sure the schoolt hinks I am odd. I'm not though, I just love him. Is that so wierd? I think not!

Oh yes, the family who mean well, listen but either dismiss it or misunderstand and choose to only see the "normal" child , know it well. I'm afraid you learn to be selective in sharing the burden

ds may well be dyspraxic, but although his teacher at the time mentioned it, everyone since has skirted around using the actual term. In fact dyspraxia is just a list of symptoms so a label of such may not be much of a step forward. He was assessed as being up to a year behind on personal/social skills and up to 18 months behind in locomotor skills on the Griffiths test last autumn, so fairly borderline. He's now 8 and he had his first assessment and Occupational Therapy as he turned 6.

Not odd at all, peachy. I get myself in a terrible state over DS1 - after all they are our babies at the end of the day, not just children with problems!
How long ago did the alarm bells start ringing with your DS1?

So you still do not know what is wrong with your DS, LIZS?
Sounds like a long drawn out procedure!

cappuchino, I know it is hard for them to accept - it is bl**dy hard for me to accept too, but I would like their support.
When I got all upset because I had to sign a form allowing the social & interaction people into school to observe him, my Dad said "Oh give that form here & let me wipe my arse with it"! Comments like that don't help!

Not officially no , but we are 95% sure. Not helped I suppose by having moved countries last summer and having to start again. We should get an OT assessment on NHS towarsd the end of this year

Did you arrange for your DS to be assessed, LIZS, or was it arranged through the school?

isn't that your dad trying to be supportive? if it was obvious that you were upset he was just lashing out at what he saw as the source of the upset.

I mean i realise it doesn't help

you do need support, you need to find somewhere where you can get it for yourself. you need to push to find if there is a parent's support group locally or even just a health professional that you can talk things through with

it's easy to forget that you need help, often even now I forget that I need it and then I end up suddenly surprised by how upset I am and posting threads like \link{http://www.mumsnet.com/Talk?topicid=1373&threadid=175695&stamp=060522125255\this} rather than ringing up a mum I know who is in the same position

if they're going to make it worse, wait until you have a little bit more information and then tell them what the score is; if they can't help you through this process then don't expect them to because it's going to make it even harder for you

Which time ?! Originally it was done by the OT attached to the school, but in UK our GP referred us to the Developmental Paediatrician (who did the Griffiths assessment) and we got an appointment about a month later. ds attends a private school(for the benefit of small class sizes and varied curriculum) so we don't seem to have such ready access to local SN services as we might in a state school.