i just need some support

[moo842]

my eldest son has an asd although at this stage he has not been formally diagnosed! i'm just not coping. he has been out of daytime nappies for 2 years ( well in 2 weeks it will be) but still wets himself, he has wet everyday this week and even soiled himself yesterday. he has no reaction whatsoever to this, not even discomfort. his behaviour is getting worse at home but he is an angel at nursey, to the point that they say he is too compliant. so if something upsets heim he blows at home. i feel like a fraud as he has not been diagnosed, and i can see people looking at me on the bus when he behaves the way he does. i love him dearly, but can't cope with it all, i'm tired. i spend all my time telling people he has an asd, and they doubt me, "but he made eye contact then" or they try to deal with him in there way, not mine so it's a constant battle.
i'm sorry

moo, don't be sorry! everyone needs support, and no one can cope all the time.
I don't know what to say really, my youngest is autistic so I know just how hard it gets, he's a 'challenge'

do you see a peaditrician or psychologist who you could press for full assessment and possible diagnosis? its the first of many hurdles, but at least when you know for definate whats what you can work with it if that makes sense.

take good care of yourself.

we have seen a pead and an es phsyc, but are still on the waiting list for the clinical physc, who we will probably not see until september even afer 3 referals from differen sources. we should have seen her last year but she sent her trainee, who to be honest was just a student and not qualified to help us. it's taken a year just to get back on to the end of the list!! it's just all such a drag.

I would make a complete nusciance of yourself if I were you, ask if there are any cancelled apointments you can have.
Talk to the Pead, and Ed Psych, because if he's at nursery now, he'll be moving into primary ed soon enough and is going to need extra support nad assistance, which is hard enough to get with a diagnosis let alone wihtout.

Just keep pushing and fighting and try not to let it get you down, which is MUCH easier said then done I know.

How old is your son? my youngest is 4 this july and was diagnosed Austistic almost a year ago, gettign the Dx wasa huge relief but very much another hurdle on the road to getting the help and support he needs.

he's 4 and going to school this september! he'll be ok in a main stream school, and i have a meeting with the school on tuesday, the cancelation thing is a good idea! do you think daily would give them the message i'm desperate?:o

moo842

You are your son's best - and only advocate. Ring the clinic on a regular basis re getting an earlier appointment, cancellations do crop up. Talk also with the paed and ed pysch and SENCO (at school, you ought to be seeing that person too) about his educational needs.

Have you spoken with the National Autistic Socisty - they are, from what I have seen on here, very helpful with much info and advice.

The school will not be able to give him much if any one to one support without a document called a Statement; this is something that you need to consider applying for NOW even without a diagnosis. A Statement will specify a specific number of hours per week he will get in terms of additional help. Its also legally binding unlike other plans like school action and school action plus (which is probably what the school will offer you). You can apply yourself as the parents to the LEA directly (IPSEA are very good in this regard and have model letters you can use; their web address is www.ipsea.org.uk). A Statement can take around six months to be issued so it will take some time to set up if the LEA agree to assess your son.

He may be finding it very difficult at nursery as well (do the nursery provide any additional support for him there?) thus taking out all his frustrations on you when he gets home.

Take no notice of other people who may stare at your son - its their problem.

Wishing you all the best

I feel the same, my DD1 has ASD, he is 3 and a half, and nursery are always telling me how good he is , but he is completly different at home, they are always saying he gives lots of eye contact, that doesnt mean hes not autistic just cus he gives eye contact, i feel like they dont belive me when i tell them what hes like. I know how you feel it is very tiring. I hope you get the support that u need.

I agree with pestering them until they give you an appointment. Getting a diagnosis is horrible but also a huge relief.

I too have a boy who is such an angel at pre-school that even the staff want to take him home with them but who can be a complete nightmare at home so I sympathise with you there.

It's good that the school are already getting involved. When my ds1 (ASD like his younger brother) was a few months away from starting school we had several transition meetings with the school. It took away a lot of the stress about how ds1 would cope as I knew that they had real strategies in place to deal with potential problems.

Good luck and keep posting on here. xxx

we've had a bad day today, he's wet himself 5 times!!
i've asked about a statement but have been told that they are only being given to children with severe problems in plymouth at the mo and my son isn't bad enough.
i rang the clinic today and have told them i want to see someone asap, they have taken my details. i will give them 2 weeks and call again!
i've met the senco at my sons school as we went to all the schools in our area to see which one would be best suited to his needs, and they seemed really clued up on what help he would need. he doesn't get any extra help at nursery as he is really bright it's at home we need the help, before we all fall apart!
i'm really grateful for all the advice on here. it's nice to know i'm no alone

Hi moo842,

Re your comment:-

"I've asked about a statement but have been told that they are only being given to children with severe problems in plymouth at the mo and my son isn't bad enough".

Who told you this exactly?. Well I'm sorry but you've been told a load of old bull. Would not stand for such talk as such is designed to put people off. People like yourselves need support and he may well need extra support at school with regards to his learning. LEA's cannot for instance say that they'll only statement "the bottom 2%" for instance - such actions are illegal!. More pertinently if you do not ask you will not get.

Keep the pressure up with the clinic!.

we've finally got an appiontment with the clinical physc. but today he broke my heart when he said no one at school plays with him. he has quite poor communication skills, and i guess the kids have got used to him not joining in!!