Feeling really down after parents evening

[Pinkchampagne]

My DS has always struggled with solialising, concentrating, organising himself, fine motor skills etc. He ticks pretty much every box for dyspraxisa, but he hasn't been assessed yet.
I have had several meetings with his nursery assistants, teachers & school SENCO over the last few years, so should really be used to hearing about how he struggles, but after every meeting I come away upset.
I have tried to fight him being labelled in the past, but now I accept that DS does have specific difficulties & is not the same as the other children in his class.
His teacher this year is lovely & was very diplomatic when talking about him, but I have come away feeling upset.
He is still struggling with his concentration, he takes ages to settle to his work, he is very slow to complete work, he cannot organise himself at all, his handwriting is very poor & when doing maths assessments he sits & does nothing because there is nobody pushing him.
She said he has good days & bad & that the last two days have been good ones, but I am so worried about how he will cope with the challanges of SATs etc & all the challanges he will face as he goes through his school life.
His teacher told me that he needs a lot of support & may end up needing more support as time goes on.
She is lovely & supportive & said that she will fill me in on his good days as she knows it all seems a bit grey for me right now.
I just feel a little upset by it all & dont know how I can help him cope better in school.

This friend does come round to play quite a bit, & DS has been to his house quite a few times.
I asked him if he would like to try Beavers one day, & he answered "Yes, because S (another friend of his) goes there & he made biscuits!"
I think I will look into getting his name down. I guess it won't hurt to try him with these things!

WEll that's good that he wants to have a go and that he is invited to someone's house. If you want to offload whilst going through the assessment stuff, please feel free to CAT me

Thanks, KP, I may well do that!

Thanks for your CAT, Kittiepickle. I have sent you an e-mail.

Hi pinkchampagne,

I felt as if I was reading a descripton of my ds (who's 7), and for years we also thought that he had "only" dyspraxia.

The assessments by the Psychiatrists took absolute ages, nearly 5 years! We moved house in between though, and lost a year "thanks" to a very incompetent trainee psychiatrist.

Finally, we got a diagnose for ds of Autism and ADHD without the hyperactivity, but the "daydreaming" type.

Please do get your ds assessed properly as soon as possible. You can also try your GP who can refer you to a pediatrician or childrens psychiatrist. Don't let the hv or anyone fob you off. Getting an assessment and eventually a diagnose takes long enough so by the time you get to the top of the waiting list the home situation might be different anyway (no idea what it's like but if your ds has an ongoing problem the home situation won't make much difference).

However, I have to say, having the diagnose hasn't helped that much so far. Our ds's problems are apparently too "mild" to get him statemented (at least at this stage).

For the AD(H)D he's now on Ritalin and it does help a lot, yes, even if the child is not hyperactive. (Depends on the child though). He still seems to live in a different world though, is still quite disorganised but we and the teachers have seen improvements.

His motor difficulties are still there of course, also the social difficulties which become so much more apparent when the children get older. Ds used to be accepted in class despite the fact he had no friends, but now I think he's also seen as a weirdo (no-one has officially said it but classmates now pick on the fact that his only friend is a girl (one who's also SEN, but sth different)

He's on school action plus as well. Luckily they run a social skills group at his school, it's worth asking if your school does sth similar as you mention the social problems.

Otherwise we don't receive help through the medical side - got the diagnose and annual check ups and that was it. But still, do fight for a proper assessment and a proper "label".

Please don't be upset, it may well be that you don't need it after all, but if you find you do, it's very helpful: As Autism is mainly about Social Communication Difficulties, but many autistic children/people are also dyspraxic, I'd recommend you have a look at the National Autistic Society Website . There's a wealth of information on there. I very much hope you don't need it but if you do, it's nice to know it's there.

In case your ds receives a different diagnosis, I'm sure there will be brilliant support groups for whatever he has as well, so getting a label does help after all.

I know how you feel and on some bad days I feel exactly the same (only I go for chocolate rather than wine ), on good days I just forget about it.

PS Have you thought about letting ds learn a musical instrument? Mine does and it goes surprisingly well considering his motor difficulties in so many other areas. He's certainly no child prodigy but doesn't play any worse than many other "normal" children. Later on he can also play in a youth/school orchestra which may (hopefully!) help a little on the social side (so if you go ahead make sure it's an orchestral instrument).

Thanks so much for your post. AS was what I originally feared he would be labelled with (from as early on as 3 years old), & I feel that the school SENCO was thinking down these lines. It was then pushed aside as maybe emotional difficulties due to home situation, but seeing the difference between DS1 & DS2, there is definitely something going on.
I posted on here a while back & got a link to a dyspraxia site, & all the symptoms fitted DS perfectly!
He is a very sensitive child & he has a lovely caring nature.
When he was younger I would blame myself as a parent, but now I know that it is something beyond my control.
I will push for an assessment, as I feel it really needs to be done now.
Not sure how I will cope with any diagnosis though, as I seem to be reduced to a blubbering wreck everytime DS's problems are brought up by anyone!

Hadn't thought about getting him to learn an instrument until now!

Am on the wine now!

Just read your post again. 5 years to get all assessments done??!!!!

They did assessments all the time - with long waits in between of course - since ds was around 2 but never came up with a proper diagnose as he was "too young", he wasn't "that much behind" etc. We(!) came up with the suggestion it might be dyspraxia, and they just seemed to accept it (sounds silly, but was like that).

It wasn't until we moved and got a different psychiatrist (the capable one, that came after the incompetent one who had no clue at all) and we demanded that we'd expected her to come up with a proper label after we'd been waiting for such a long time.

ASD seems to be more known/accepted than dyspraxia. When we only had the dyspraxia label the only thing that happened was that the OT came in twice a year or so, wrote reports and handed out some copies and that was it.

Since ds has received the ASD/AD(H)D label, it seems to be taken more seriously than "just" dyspraxia (as if it wasn't bad enough). There seem so many overlaps between ASD and dyspraxia I find absolutely confusing. ASD sounds probably harsher or worse for yourself, but school/health professionals all seem to accept it more, while dyspraxia is still rather unknown and not accepted in it's own right, no matter what the dyspraxia foundation fights for. It's strange, but that's my impression.

Hi...just read this quickly...but fet exactly how you felt ...my eldest now 12 was noted atreception to be 'unique'-diagnosed adhd at 7 and AS at 9.
I foiund it very hard to accept that my 'little boy' had special needs. I too was landed with this at a parents evening...explained that he had Special needs etc..."reassured" it was not because he was not achademic...he's very bright...but cos he is 'struggling socially".

so i went away feeling terrible...the teacher had even mentioned the 'dreaded' Autism word to me. ofcourse, i panicked...we all go through the same feelings. Don't feel bad...allow yourself time to feel all the feelings you have...i still have days when i am convinced its all my fault- others when i am sure he is not autistic...others when he is so 'autistic' that i want to blow up his school for not giving him the help he needs....then days when i just cannot get out of bed.

My eldest was labelled AS/ADHD...but he too has dyspraxia....

here are a list of his difficulties...

.cannot ride bike (no urge to try)
.does not space words/letters correctly- cannot even read his own writing
.still 'unsafe' with cups of drinks...better with lidded sports bottles
.hates any light in his room at night...so every morning i go in there are tshirts etc draped over his clock radio dispay/tv 'standby light' and the video timer display
.hates socks...says they prickle his feet
.still cannot blow his nose...still ends up with me wrestling with him (which is quite a sight as he is now taller than me!0...to in some way get him to blow his nose.
.still hates having hair/nails cut
.only recently seems to be brushing teeth in a fair manner.
.NEVER wees in toilet- i always have to clean up after him.
hates 'mixed texture' foods....so no yougurts with lumps...but would eat the yogurt and the fruit separately.
.distarcted easily- poor eye contact- as cannot 'look and listen' at same time
.cannot tie shoe laces
.chews and bites anything - even playstation controllers and wires
.needs assiustance to get to sleep..takes Melatonin as prescribed by paediatrician
.runs with arms and legs flailing all over the place- like a puppet- and has hypermobile (flexible) joints- meaning he falls awkwardly- and explains why holding a pencil/scissors/cutlerly hard- as the effort needed to contol these items is more than someone who has 'normal' joints- he has to concentrate to keep a rigid grip etc)
.high pain threshold- so can hurt himself or be very ill before WE notice.
.will choose inappropriate clothes for weather--seems to not be aware how hot/cold it is

Now...i will stop...as i wanted to explain that 'despite' all this...you really would not now looking at him. and yes there are days when i could %$&£*"!!!!! with the frustrations that i feel with his attitude or his messiness...but i truly accept him now as he is. I have passsed the stage where i tried to 'cure' him...now i work with him...there are many strategies to help...and though i feel i do have to plan and reherse every aspect of my life ....the result is that he is happy.

p.s...i also have a 9 yr old with AS...and my 7 yr old is being assesed for ADHD/AS too!!!

So for me this really is a way of life...and it is actually easier parenting 3 in the same way...though exhausting...rather than if 1 was not AS etc.

i really hope i have helped ...not made you feel worse...as i sit here i can remember feeling how you do now as if it were yesterday...not 5 years ago.

Thank you both for your posts. It's funny, I can accept the thought of him being diagnosed as dyspraxic, but find the thought of them telling me he has AS much harder to deal with!
Don't know why this is, as the two conditions are very similar, just think the word "dyspraxic" doesn't sound such a big deal for some reason!
Up until quite recently I couldn't get my head round the thought of him being labelled with anything at all, even though I knew he did have specific difficulties which did single him out from the other children. I just couldn't accept the thought of my little boy being labelled with anything full stop!
In the back of my mind I have always worried about the possibility that my DS's problems were maybe related to something like AS, but have always tried to fight his corner & make out that he was just a very anxious child.
I would always get very upset (still do!) everytime someone pointed out how DS was struggling at school.
It is only now as he has got that bit older that I have started to really notice how many things he struggles with & I realise that I cannot keep fighting against him being labelled, as he really needs the extra support.
I agreed to him being observed by someone from the social & interaction team earlier this year. It appeared that he was having quite a good day at the time though & very little was picked up on other than a bit of hand flapping while running in the playground.
I read up on dyspraxia, mainly because of his fine motor problems, concentration & organisation issues & the fact he has always appeared very latharic.
I was really taken aback at how many of the dyspraxic symptoms that I could tick off!
I have given a copy of the dyspraxic symptoms to DS's SENCO & have ticked all that apply. She has made copies of it & given one to his class teacher, but wanted to hold off pushing forward the referral for now.
I really think that the time has come where DS needs to be assessed, however hard it is going to be for me to accept, because the problems are there & will not go away. I really want for him to have help & understanding now.

I found your post very helpful, MrsForgetful, especially your list of all of the things your ds struggles with. I can identify with some of them!

PinkChampage...don't forget to hold tight to the fact that his teacher said he is very good at reading. If he can read books to himself, he is learning...as long as the teacher is aware of his achivements in this area (it sounds as if she is) then whether she can understand him through his mumbling is less of an issue...the mumbling can be dealt with separately and in due course.

He realy does sound a lovely, lovely little boy.

He is good at reading, Blu, & I try to make sure he is heard every night.
His teacher also told me he sometimes amazes her, as although he is all over the place on the carpet & appears to be daydreaming or looking out of the window, he will still be taking in what is being taught & often repeats some fact she has just explained to the class while DS appeared to be in his own world!

He has come home today with a handwriting booklet in his book bag.
He was keen to make a start on this & we have done a couple of pages, but it was really hard work to get him to form the letters correctly.

hope u are feeling better today...i totally know what u mean about the AS.. even now i find it easier to say tom has ADHD than is 'autistic'. There is still too much 'stereotyped' image about autism...however once you 'join the club' u get to meet so many people (parents and children)- who are cover the whole 'range' of the 'Spectrum'..and you start to see other children 'just like yours'...and you begin to feel better

But..i'm NOT saying your son has AS!!!!! Just 'if' in time it is diagnosed..then it actually can be better...as my boys get to go to playschemes where tghey get to mix with 'kids like them'....so they benefit from mainstream school AND special support.

When tom was 7 i 'forced' the paed to let me have a dx of ADHD for tom...and put the AS to one side...he has a ritalin type drug since then...and though for a year or so...life was good..and i admit (shame faced) that i even bragged to a parent of an AS child that 'she was WRONG...TOM was NOT autistic after all...' (as she had hinted many times that she thought he was AS..and funnily enough...now i have a built in radar too...i have correctly 'diagnosed' many kids i have met....who are eventualy officuially diagnosed'

so...in my case...with all 3 of my boys ..their ASD is such that they ticked along quite nicely till age 7..always having been chatty,social and bright....and still are.....but around 7 'other' children seem to overtake them in social skills...the party invites stop...they get excluded in the playground(cos they don't understand the roleplay complex games kids play...or find turn taking hard)...and they are expected in class to be independant,organised and resourceful...which they find hard...such as folowing a few instructions at once....they need 'one at a time'...whereas their classmates manage.

so for me..that is why i believe there are alot of 'normally developing' kids that 'manage' in infants...but as soon as they reach juniors... then the AS begins to show...its not that they suddenly become autistic...its just that in infants they are expected to need support...and then in juniors they have to move on.

AS is all about the horrible word 'impairment'....in that it's not that the child cannot SOCIALISE...or COMMUNICATE....or ORGANISE etc...but that they can...CAN...but only so far....and in my case...it is 'complicated' by the fact that they often are stunning at something...which people link to the 'rainman' phenomena....but it's actually a real disadvantage for them to be so great at something...cos people then expect them to be great at otehr things...

finally,,,,thinking now of my 9 yrold....he is assessed at being age 14+ for his maths ..yet emotionally/behaviourly..school are finally agreeing that he has not moved forward...they are almost agrreing with me now that he stopped developing emotinally/behaviourly at age 5....
which wa s'ok' till recenty as it 'blended' in to alot of the 'slow developers' - but now to see him at almost 10...crying ...stamping feet...in class...just looks wierd. He is yr5 now...and his teacher ha sjust admitted his concerns for leigh at secondary school...he used to teach at secondary..so i am now worried ...as he obviously knows what it will be like for leigh.

I am feeling a little better thanks. I am still very worried about DS though.
His social & interaction problems were pointed out at nursery & he had an IEP before he even started school.
I would always tell his nusery workers that it was because he was anxious, just like I was as a child. I think deep down I feared there may be more to it than that though.
He seemed to improve just before starting school & I thought all would be ok. I was wrong, as the problems came back when he started in reception.
He was reported to be very lathargic (would often lay on the floor), did not socialise with others, found it very hard to make a choice as to where he wanted to play, poor concentration & would turn his back in assembly etc.
By the end of reception he seemed to improve, but the start of year one sent him back again, as has going into year 2. Infact his problems seem to stand out more now because of the expectations of a year 2 child.
His organisational skills are awful, he cannot take in more than one instruction at a time, he is still all over the place on the carpet & cannot concentrate.
I really fear for how he will cope with the added pressures of the juniors etc.