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Really need some reassuring words as am having a bad week.....

(9 Posts)
Barmymummy Thu 02-Jul-09 11:20:36

I am having a wallow blush

Need a kick up the bum and to be reminded that DS WILL progress and the problems WILL be sorted!!

Things seemed to be getting so much better and he was making good progress with socialising, speech etc but this week it has all come crashing down around my ears and made me realise again that DS is ASD and that it hasn't gone away....know what I mean?

For example his behaviour this week has been challenging at home and playschool with pushing, over excitement etc. It has hit home to playschool at last that he cannot re-tell a story unless its done by echolalia, cannot predict what may happen on the next page of a story, cannot relate very well his experiences to whats going on around him and doesn't respond correctly to whats being said to him.

Examples of the last 2 things are:
Its bug & butterfly week theme at playschool this week and we saw a stag beetle on the way to school. Showed DS and said we must tell playschool we saw that musn't we?! Got to playschool and had no idea at all when asked what he saw and would have no concept to link that to the theme.
He also just seems unable to hear whats being said to him and talks at them rather than respond correctly. EG, talking about releasing butterflies into the garden he replies with "the caterpillar likes to slide down the stairs" hmm. That sort of thing.

It just all seems so unsurmountable at the moment and so isolating. Should I ring his SALT back up (she has not done anything with him except give me some handouts to do with him re speech) and ask her or is this not her field?

HV says she will get the FIRST team involved after Sept if there's no improvement so they can get some things in place to help with the transition to school but I don't really know what that entails and what they will do.

Left playschool in floods of tears today looking like the sad mother who can't cope when I tried to talk to his teacher about it. They are very good and supportive towards me and DS so I should feel OK but I don't!! Am so afraid to pick him up today for fear of being pulled aside and even if I am not I just dread the next time. I was so close to not sending him today so I could get out of that worry for the day sad

God am so deep in self pity today its unbearable.....tell me I am not the only one who feels like this at times and that things will get better!! Lie if you have to wink, xx

Barmymummy Thu 02-Jul-09 11:47:50

Am off to get him.....deeeeeep breath....all will be fine (repeat x 100) grin

Frasersmum123 Thu 02-Jul-09 11:52:48

Sorry to hear your having a bad week, I know we can all sympathise but it might not make it any better.

My Mantra is 'Tomorrow is another day' which sounds really cheesy but to me it helps me keep focused. Yesterday might have been terrible but how can I make today better.

Also, take joy in the little things

lingle Thu 02-Jul-09 11:56:50

have you got "More than Words"? I think it would help with those scenarios.

AttilaTheMeerkat Thu 02-Jul-09 13:21:42

First off many hugs to you(((((((barmymummy))))))))). Things will get better but this may be one of many battles you will face particularly when it comes to full time school.

Who made the ASD diagnosis originally?.
Do you have a developmental paediatrician on side?. If not I would get one of these people involved asap via your GP and get him to liaise with preschool. If your son has seen such a person in the past I would arrange to see them again asap.

Re your comment also:-
"HV says she will get the FIRST team involved after Sept if there's no improvement so they can get some things in place to help with the transition to school but I don't really know what that entails and what they will do".

Is this particular HV a special needs health visitor?. It all sounds very fine and dandy but it may well be all words and plans but no real action. DS may well be put on a scheme like School Action Plus which is okay in theory but can offer only limited support (no one to one for instance and SALT may be limited as well). Also it is not legally binding unlike a Statement so the support can change.

I would look into applying now for a Statement of Special Needs for him from your LEA with regards to going into Infants and beyond that. That must seem very daunting - and it is but you are your child's best and only advocate.

IPSEA are very good at the educational side of things and they have model letters you can use if you want to know what to write:-

www.ipsea.org.uk

BTW Do you also get DLA for your son?. If not this is worth looking into.

I'd also be talking to the NAS for further advice and support.

Barmymummy Thu 02-Jul-09 14:09:19

Thanks ladies,xx

Will try and find a copy of more than words, thanks Lingle.

Attila - Yes DS saw a paed in May and to quote her words "DS has a touch of ASD, prognosis excellent, definately mainstream and is nowhere near needing a diagnosis or statement".

So there we go, left at sea. Playschool make me feel like I am making things sound worse than they are and maybe they are right but I don't feel comfy letting this go on. Playschool were a bit anti when I said about FIRST saying he would need referring first.

My HV is just my normal HV and she is very much on my side and supportive. She has made an appt for me to see her in Sept to review DS's progress so I don't doubt her intentions.

No DLA as no statement etc.

I guess I just feel very very overwhelmed, solely responsible and alone with it all. Very isolating. Have spent most of the last 2 days in tears and I am getting v fed up with it myself let alone others having to look at me lol!!

I will ring NAS and talk to them, thank you all so much, xx

AttilaTheMeerkat Thu 02-Jul-09 14:58:24

Barmymummy

Re your comment:-

"Attila - Yes DS saw a paed in May and to quote her words "DS has a touch of ASD, prognosis excellent, definately mainstream and is nowhere near needing a diagnosis or statement".

"So there we go, left at sea".

Small wonder you're feeling left at sea. The system which is designed to help people like yourselves is failing it and badly too.
You're all being failed here, not just your son.

I am appalled honestly at this irresponsible paed angry (what sort was it btw, was it a community paed. You really need to be seeing a developmental paed). A touch of ASD!! - well ASD is not a touch, its a spectrum and a lifelong condition.

The less said about this preschool the better really. They are plain ignorant.

Your son may well start failing in school if there is not enough support in place for him and his educational rights need protecting. Regardless of what this paed says I would push on with a request for a Statement from the LEA.

You do not need to have a Statement in place in order to get DLA. Were you not aware of this?. You can and should apply for that as a matter of course. The form is real bad to fill in but there is help out there re this (cerebra charity is well placed in that regard) in and many MNetters on these pages have experience in filling in these forms. Do ask about DLA to them, it can help you all as a family.

Do phone the NAS as well - they can also assist.

I would actually be looking via your GP to find another paed to work with and to get a firm diagnosis.

AttilaTheMeerkat Thu 02-Jul-09 15:00:13

HV is okay but you preferably need to get your GP on side now to do the groundwork re further referrals.

TotalChaos Thu 02-Jul-09 16:28:28

you have had great advice from Attila, agree with her about paed/statement and also that pre-school are not being great. Given he's been seen by SALT I think pre-school should have been more on the ball with regard to echolalia and language issues. May also be worth seeing if your DS could see a more specialised SALT (some areas have separate teams for ASD and/or social communication problems). My DS also can be somewhat erratic at answering questions (residual receptive language issues IMO). It's frustrating, but keep plugging away, if necessary using some sort of visual and/or simplifying the question to try and keep the communication going.

It does feel terribly isolating pre-DX - but irony is that language problems in particular are really not that unusual - I have found out indirectly e.g. that a child at my friend's DD's party also has language delay and uses Makaton to support her speech, and that a child at the toddler group I used to go to has a split language unit placement - unfortunately it's just so hard to break down the barriers in real life and find support the way us mums support each other on mumsnet.

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