Me and nursery teacher discussed our concerns about ds today - feel so overwhelmed - long sorry!

[KaySamuels]

I have always had some niggling concerns about ds and it seems his nusery teacher has too. (He is 3 and a half btw)

He is toilet phobic so poos his pants

Is obsessed with toy cars and Thomas the Tank (knows every character's name and colour), and buses.

Lines up objects (not just toys)and becomes unconsolable if they are moved even slightly out of line. Same with towers of blocks.

He has a staple book, and a handful of dvds that he knows every word to. He got a new dvd recently and knew every word the third time he watched it.

Likes things to be 'whole' so a pizza is altogether like a 'window circle', they had a toy one at nursery today and ds was sobbing because someone removed a piece.Same reaction if a puzzle piece is missing.

He has brilliant vocabularly, but talks very formally like a little old man.

Struggles if routines are changed, likes to know in a morning where we are going, what we are doing, who is coming (I childmind).

Gets upset at nusery if an event happens without him being prepare for example coat on time with a prewarning.

I find I adapt conversaion to him as I know what helps for him to respond.

He has also recently developed an obsession with signs.

Teacher said she was pleased I came in to talk to her and had noticed the same things during written observations of him. Has said after half term will call in Head and senco team, with possibility of getting him someone in to nursery to work with him.

She was really nice and I was glad in a strange way that she had noticed but I feel so sad for ds. I don't know how this will affect him or what will happen - feel lik world has been plonked on my head upside down. Has anyone been through similar??

that should read without a prewarning

It is a bewildering time kay and I do understand what you are going through. For what it's worth, and I'm no expert, it does sound like you are both thinking along the lines of aspergers. The fact that he has such great language skills make the prognosis very good, if indeed he does turn out to be aspergers. My step daughter is high functioning autistic and is now, at 12, as near a "normal" child as it's possible to be. The only remaining signs of her autism are some slight conversational oddities and some (very minor) social difficulties (eg she did not know that she was supposed to look sad at a recent family funeral). He sounds like a great little chap and I think it is really good that you are making sure he'll get any help he needs going forward. My little boy is 5 and autistic (not yet quite as high functioning as his half sister, and far less language but I am holding out hope for as normal a life for him as possible). I am now teaching him to read! Plus, it is totally impossible that I could love him more if he were not autistic - he is the happiest, sunniest little boy imaginable . He too used to line things up a lot at your DS's age, but one true thing a wise lady with an autistic teenager told me is that even autistic kids grow up and therefore grow out of things. My boy goes to school (mainstream) with a full time shadow or LSA, and if your boy needs that going forward then it's really good that you've started off the whole diagnosis process now. Or, he may not need that much help, but just more understanding from the teachers and allowance made for his needs (rather than him being treated just as a naughty boy, as happens to so many undiagnosed kids who slip through the net and flounder in mainstream school). Anyway, good luck and let me know if there is any help I can give you at this tricky time.

Aw thanks so much for your reply it means a lot. I know hardly anything about autism or aspergers, but knew enough tp have concerns IYKWIM.

My DS is wonderful - we are extremely close and I have been feeling overwhelmed by him and very protective at the same time recently which I am finding exhausting!

I think you are right about the naughty label when we went in today he was crying and another little boy said he was being naughty. [anger] Glad teacher is kind and on the ball.

Xposts Tclanger - what would the gp and HV do to help exactly? My GP and HV not that great sadly.

I know I sound daft but what is done now? Do they statement him? Who does this the senco? I am all confused.

Road signs, bus stop signs, even garden signs are extremely interesting and I have to be just as enthusiastic ion my response or we just stand there with him repeating himself until I muster enthusiasm.

Hi kaysamuels.I really feel for you.My ds1 had always been"different"but nothing i could really put my finger on until he started school and o had concerns for autistic tendencies.It sounds to me very much like aspergers which is waht ds1 was diagnosed with last year.It was a very hard time for me.On the one hand i was so relieved that i finally knew what we were dealing with and i could learn about it and try to understand him more.On the other hand i was totally overwhelmed by the diagnosis and the realisation that it would be with him forever.It is also hard to accept that you dont have the child you thought you had and all your hopes and dreams for him have to be altered as he is going to be a very different person than you perhaps had in mind.I felt and still do at times very sad for him as you do but i think that is looking at it from our perspective.Ds1 seems very happy in his world and it is just me that wishes he would socialise more.
The great thing for you and your ds is that this has been picked up early and you have got so much time to help him understand the world more.These children are incrdibly bright and what they dont know instinctively they soon learn the reight behaviour.I have found that life just takes a bit more planning and explanation for ds so he isnt unprepared for things.At the end of the day your ds is the same person as he was yesterday it is just you that has changed with your knowledge.
Just enjoy him and celebrate his talents-i bet he has loads.
There is an excellent book called All cats have aspergers(you can get it on amazon)and it explains it simply and takes about 5mins to read,but also gives a lot of positive.I often look at it and it makes me so proud of ds and all that he is able to do.
Sorry this is so long.I hope you are ok.The support on here is great!

You have made me cry yummymum1, the way you describe how you felt is how I am feeling, ds asleep on me as I didn't want to let go of him and leave him in bed tonight.

Remebered another thing he does:

Is obsessed with doors and gates being shut

If I were you, I would write to the head of SEN at your local LEA (look up the name and address on council website)and write "I am writing to request a statutory assessment of my son for Special Educational Needs under the 1996 Education Act". Then write a line or two about your own and the school's concerns. Sadly, if you leave it all in the school and SENCO's hands, things may not progress as, however well meaning the individuals concerned are, the fact is that they are paid by the LEA, and the LEA don't want to statement any more kids than they have to as it costs them MONEY. If you start the ball rolling with a written request like the one above, you are then into a legal process where they have to send someone to observe your DS. You can google statutory assessement for SEN, as there is a whole laid-down timetable. It may be that your son is not severe enough for a statement, in which case they'll give him extra help via something like School Action Plus - could just be some extra tuition per week. The real question is - do you think he can cope in mainstream without help going forward. If not, try and get a statement - if yes, still get him assessed as it's the only way to access extra help and resources. My hf step daughter went through mainstream with a helper, as she had a statement, and only now is she flying solo at school.

Now you have made me cry kay.It is so hard but now i have had a year to get used to it ,it does get easier i promise.You just want to wrap him up and protect him and make it alright,which you can do by helping him see our world.It is great the nursery lady is so helpful and good to get things in place now that will really benefit him.
I found that once we had the diagnosis i didnt get so frustrated with ds and all his obsessions and his grown up language and having the same conversations over and over.I think he is a great boy who has learned so much even tho he must find us all very strange!!

Am I being naive here then RE what will be done for him? Is this going to be something I need to fight for? I honestly don't know either way if he could cope in mainstream without help, he started nursery in January afternnons only and is still finding it distressing and difficult - but likes going most of the time. Sigh! Feel so lost and confused.

Ah yes we have converstaions over and over, or just one question over and over. I feel sad now that I get frustrated with him (don't show it but it tires me). He is very grown up in some ways and very baby like in others. I love him so much and just want to make it alright for him.

Also will play doctors but has a script from a peppa pig story and won't stray from it at all. Apparently my heart is a bit loose.

My ds isnt "bad" enough to get a statement to have help at school but remember that your ds is only 3.At that age my ds found preschool pretty awful and was obsessed with when i was coming back,loud noises,sudden changes and even certain people coming into preschool would send him screaming into the quiet corner!!By the time your ds starts school he will be older and some of these anxieties may have faded.
In our case i discussed my concerns with the hvs who sent the school nurse round to see me and suggested aspergers and then referred me to the consultant paed who mde the diagnosis.It may be enough at this stage to leave it as it is with the nursery getting the senco involved and to take it from there.I know you said the hvs and gp arent great but i would approach them again and push for a diagnosis esp now the nursery are involved too.

Aw bless you Kay. I can't add anymore to the thread, than the other lovely ladies already have, but I can offer a shoulder, whenever you just want to sound off or say it out loud, so to speak.

I will watch with interest though, as I have a friend who's ds sounds incrediably similar to yours, imho.

Sadly she cannot see any problems and he is now 5. I have put off suggesting anything, for at least 2 years, but I feel, for the good of her son, she needs a gentle word now. Its got to the point, that as a childcare worker, it would be wrong of me, as her friend, to NOT say anything.

Well done for spotting it and acting on it so early, Kay. Everything will be OK.

When he was diagnosed my biggest guilt was thta i had been so intolerant of him and prob shouted at him for things he really couldnt help like not getting dressed or understanding when others were hurt.I felt absolutely dreadful about it but have now come to see that i cant change then but i can be different from now on.I still get frustrated with him at times but i can laugh about it at the same time because i know that is just him being him!!

Thanks everyone feel a little better for getting things off my chest.

MML - use me as a conversation opener with your friend, I think I felt the same as you re as a childcarer POV.

Will log off as stupid laptop battery going but will come back on in the morning. Thanks again

K
X

x posts again there

Happy Birthday for tomorrow TC!

Will be back for sure.

Happy birthday for tomorrow tclanger.I expect you will get breakfast in bed!!!!
Enjoy your day

Sorry you've had this news, KS.

I have 2 boys with ASD. Ds1 was dx'ed at 3.5yrs and ds2 at 2yrs.

The nursery staff sound great. Half the battle can be getting people on your side so you're off to a good start.

I haven't been through statementing (yet!) but would be glad to help with anything else if I can.

Happy birthday, Tclanger.

Awww Kay, I didn't want to read and not reply.

I can't add anything but like MML, wanted you to know that I am here if you needed a shoulder or anything.

Well done for bringing it up with nursery and for wanting to make sure that your DS gets the best start. It is so clear that you love your ds so much and want what is best for him, whatever direction that takes.

Hi Kay,

He is still your sweet little boy no matter what. You are perhaps feeling sad because your son now has a different reality to what you perhaps unconsciously mapped out for him.
These feelings are normal.

I would also suggest you also write to the LEA asap and request a Statement of Special Needs for your son. If you can obtain such a document for him (and unlike plans like School action plus a statement is legally binding. Also SA plus is not worth the paper its written on!!!) it will likely make his educational life, particularly at school, that bit easier.

Nursery can also get the ball rolling by applying for separate funding for your DS so that he can have one to one during his nursery time. However, you need to apply for the statement now; you have far more power than they do when it comes to such things. The earlier you get such a document in place the better; it gets far harder when he will start school. You ideally want the statement in place before he starts school.

Early intervention is vitally important.

The LEA will hopefully say yes but if they don't you can appeal their crass decision.

IPSEA are good at the whole minefield that is the statementing process and there are model letters you can use.

You are your son's best and only advocate. No-one else is better placed than you to fight his corner for him. And you may well have to fight hard to obtain his statement from the LEA.

If you really want to help him you will face this head on now, hard as it is to do, and fight his corner!!!. This is because no one else will.

If your DS has not already seen a developmental paediatrician he will need to see such a person as they can diagnose officially. Your GP should refer you to such a person. If your GP is hopeless then move GP practice.

Also the National Autistic Society are worth contacting.

HTH, good luck

Attila

www.ipsea.org.uk

Morning everyone

Didn't sleep well and feel a bit numb about things today. I will have a look on ipsea tonight thanks. You are right I do have to take things in hand here and will fight to have him statemented. He doesn't start full time school until sept 09 so lots of time to get help in place for him.

Will talk to teacher again today and also call GP for an appointment. Don't knopw whether to move docs first though or give him a chance.

Thanks again everyone for your kind replies it helps to put it down in writing.

I know a mum who runs the playgroup we go to has a son with asd, would it be weird to approach her for advice? I know she has gone throuh the whole senco/statementing thing.