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.

Oh, cappuchino, poor you. Hope the jokes helped cheer you up a bit.
You are right, my Dad probably thought he was helping, but he is of the thinking that there is no such condition as aspergers & there is nothing wrong with DS. Both my parents have told me that I must not let him be labelled & that I am the only one who can protect him etc.
I don't want to think that my DS has something wrong, but I know he is a cause for concern at school & that he struggles in class. I am now beginning to give up on the fight & want help for DS.
It is hard, because I know it must hurt my parents too, as of course they love DS to bits.
Sometimes we also need someone to support us though, as it is so hard having to face up to the fact DS may have a problem.

Do you think your DS is getting on better in the private school, LIZS?

blueteddy I was talking to a friend of mine from school the other day and we remembered a girl who went to school with us who obviously had special needs

she had no support and we realised that it was probably her mother pushing to get her into mainstream school; she would probably have gone to special school in those days

maybe your parents are from the generation where children with problems were shunted off into special schools and less was expected of them; that might explain why they don't want your ds 'labelled'

but these days we understand a lot more about certain difficulties and we can help children with them as long as we know what we are dealing with

btw the jokes did help; but not as much as the ice cream

I think you are right there, cappuchino. I remember at my primary school there was no special needs section - if you were struggling & behind with your work, they sent you to a special school. I remember a boy in my class suddenly leaving to go to one.
It is not like that at all now though & they have a lot more awareness of these conditions.
Glad the jokes & ice cream have made you feel a bit better!

Lizs, how did your DS cope with the year 2 SAT's?
This is something that is really worrying me atm.

With Sam? well he was IUGR but he reached every milsestone early- we thought we had a genius! At about 2 I guess we cottoned on, but we always knew he was 'different', iykwim.

blueteddy, as you know I have another of these boys (who incidentally is doing his first year 2 SATS paper today - I'll report on how it's gone when I find out later - if he decided to co-operate, it'll have been fantastic; if not, dire). How to make him decide to co-operate is the $80,000 question - no answers to that ...

By the way, he's at a private school and one downside of that is that none, but none, of the staff has any training or experience in children outside the normal range - they all look to me for guidance, and I obviously haven't any training either - so I wonder sometimes whether I shouldn't move him to a state school. It's all a bit grass might be greener, I think!

I first started noticing that DS1 was a little different when he was around 3 years old. He seemed a very quiet well behaved toddler. He never really did the climbing thing that many toddlers do & was quite happy to entertain himself.
He took a long time to settle at nursery & the nursery workers were concerned that he not only wasn't mixing, but would walk away when children approached him. He would also turn his back on the rest of the group at carpet time.
I blamed myself, as I had been in a state of depression throughout my second pregnancy & after the birth and thought my depression had caused the problems.
Before he started school I had a pre school adviser come around to the house, as she had spotted him during her visit at the nursery.
I got myself very distressed, but then suddenly nursery reported some amazing change in him & I thought all would be okay.
This was short lived though, as the moment he started in reception, all the problems came back.
It was always my fear that he would be labelled & I really fought against it. I guess I always knew deep down that something wasn't quite right though.
I have now got to the stage where I know that I cannot fight against it & that being aware of a possible problem may help DS. It is very hard to accept though.

Hi, Bink. I am glad you spotted my thread, as dinosaur explained to me that my DS sounded very similar to yours.
My DS's TA said to me on Friday that it was so hard to find anything to get him motivated - which is something I know so well!
I hope your DS does okay in his SAT's. I can imagine my DS sitting there doing nothing, if left to his own devices!

Your DS has not been labelled with anything yet, has he bink?
Think the school are thinking my DS may have AS, but he doesn't tick all the boxes for this.

I do think that with this level of concern, it would be sensible to ask GP for a referral to a paediatrician who specialises in child development issues. I don't know what the waiting lists are like in your area, but they are awful where we live, so probably best to press on and ask for one now really.

Bink, nobody at our school knew about AS either but BIBIC went in and did training. I have noticed that things improved dramatically at the school with regards to their attitude towards Sam in the last week. YAY! I am so glad, had dreaded moving him, such a fab school on the whole. just praying it lasts.

Waiting lists are awful here too, dino! I had never thought of going to the GP myself about him, as the school seemed to be doing a lot & I guess I was trying to brush it all under the carpet & not think about it too much, kidding myself things wuld be okay.
I think I am going to have to brave it all now- especially after trying to do his homework with him the other night. Trying to get him to write & to stay on the same line was a really painful exercise. Something is not right & I guess it is time he was properly assessed.

From the pov of having smaller class sizes and thereby more individual attention (1 or 2 to 20 maximum), private has worked well. We have also found this school particularly good at rewarding effort and progress as much as achievement which works well for encouraging ds and giving him more confidence to try. He also has access to a wider variety of sports, music, art, design and technology than he may otherwise have had. His teacher suggested that he had special handwriting sessions, without our prompting, and they also offer touch typing for a selected group, but not ds, yet . The Yr3 classes are ability grouped together for maths and spelling once a week so he is with children at a similar level. I'm not sure that a state school necessarily has the resources to do the same and in a class of 30 his difficulties may well have got overlooked as he behaves well and is quiet.

However we don't have actual experience of a UK state school as he was previously in an International school abroad , where the most kids he had in his class was 14. He only moved last summer so avoided KS1 SATs and in fact his current school doesn't do them anyway. They are doing low key internal tests atm, but he doesn't seem to be finding them a problem although the main Maths and English ones are tomorrow, so we'll soon see !

DS1's writing is still absolutely awful, and he hasn't quite mastered the art of bike-riding yet either. But when he got his diagnosis the paed said he wasn't dyspraxic! I think she'd probably change her mind if she was reviewing now.

Blueteddy - re your question: no, no label of anything, but then again we've not done a full-scale assessment - only ed psychs and speech therapists and such, who've said not ASD, but aren't in fact qualified to rule it out.

However, as I've said elsewhere, if it's AS it's a bizarrely mild presentation, as he's got no routine issues, no obsessions, no particular food/sleep problems, doesn't do meltdowns. His imagination seems active - but fairly normal, in that he likes it best when he's got other children joining in with his time-travelling etc. fantasies. His problems are really the social ones - I think the core one is not having any herd instinct, not even the one tiny toddlers have of sticking near the person who's looking after them - and (probably in some way because of that) a ropy sense of social boundaries.

Your DS was diagnosed when he was quite young, wasn't he, dino?
Is it that he hasn't got the hang of riding without stabalisers, or does he also have trouble peddling?
My DS seems to still have problems peddling, it's like he doesn't have the strength there. My Mum keeps on about how he should now be riding without stabalisers! Fat chance atm!!

Yes, he was about 3 3/4 when he got the diagnosis. He can pedal fine, but hasn't quite got the knack of pedalling/balancing/steering all at once. I didn't learn to ride my bike until I was the same age as he is now, though, so I think that feeble DNA probably doesn't help!

My DS has a great imagination too, Bink. He is also not at all bothered about routines - infact it would be nice at times to get him into one! He is very in tune with others feelings & nothing upsets him more than to see me upset and change doesn't seem to bother him that much either. He is a fussy eater, but not to the degree some children are and gets very into things, but moves quickly from one obsession to another & can have several on the go at once.
Talking of imagination - at this moment in time I have both DS's telling me to put my hands up or they will shoot! My dear mother has bought them both a toy gun this afternoon! Deep joy!!

ds is nowhere near bike riding, it'll take years yet I think. We worked steadily on scootering this winter and he cracked that (aged nearly 7 ... most kids crack it around 3 or 4).

When he was at nursery (late 3, I should think) they had a sponsored tricyle ride and he was the sole child who could not pedal and had to do it pushing a doll's buggy. That feels a bit sad, looking back.

dear lovely dh has just e-mailed me (I'm at work) to say that ds had a good day at school and got 19 out of 20 in his spelling SATS. So blueteddy it can be done!!

Things like that make me sad, too. Like the story I was telling you about going to DS1's nursery Christmas do, to find that he'd been mysteriously left out of the performance.

LOL, dino!
Bink, does your DS have problems with his handwriting too?

Excellent, Bink!

I was LOL'ing at the feeble DNA by the way,dino, not your last post. Am not the quickest typer!