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[pokhara]

just feel so alone, and feel like im trying to fight a battle but getting no where, my sister critisises the way i am parenting m dc and thiksi should be doing more to help him, bt god almightly i am trying and have been for 2 years , my son i not getting help of the professionals as too delayed with language which i disagree with, i cant dare go out the house without the maj buggy anymore after today, as et critisied for not being able to control dc whe he is hyper andjust cannot stay still and stay by me.

having an awful day in fact telast 2 weeks, just want oup and leave an move somewhere else where people dont know about dc problems and hope hey dont guess so that i cant be judges anmore.

i am really really down, cant stop crying this evening as i am just exhausted with the whole fght thing, shall i just g on as if there is nothng wron with dc and see what happens because itis too stressful, i just want a normal child, i know that sounds so nasty, i love him to bits but why is this happening to us.

pokara, how old is ds? what is his dx? do you have one?
are you in receipt of dla?
when was the last time you saw his paed? are they actively controlling therapies or have they left it to everyone else?
has ds had a full developmental review by paed recently?
is he at nursery or school? do you have a sympathetic professional anywhere in your arsenal that ycan help you make sense of the rest of it?

sometimes it's a bit of a rollercoaster - we all get really down, honestly.

are you having trouble keeping him in the major? (crelling do some good harnesses if it is a safety issue)

take some time for yourself if you can - you sound like you need to recharge your own batteries before you can do any more fighting on ds' behalf. have a warm bath and an early night.

sometimes you have to take a couple of days 'out' and then come back in fighting. no-one can constantly battle with other people's assumptions.

ds 4 this month, no dx yet thought asd and adhd paed said not asd although has traits and poss adhd but in jan said doesnt think that, gave no other indication, ds has lang delay of 20 months, challenging behaviour, snesory issues, hyper, attention difficulties, this to name a few. last saw paed in jan, he told me that ds lang delay consistant in last 2 years ( 2 years ago was only 12-18 mths delay). salt say cannot do thereapy as comphresion needs to comeon and attention difficulties so send flimsy little programmes to nrusery, no 1-1 just integrated in their everyday activities in nursery. no other help ongoing, wont let him go in lang unit as too delayed but head of nursery says not enough evidnce for statement s very sociable, although paed in latest report put in sentence " language delay present in all settings so future educational needs to be based on this", i interpret that as either special school or statement for 1-1.
so basics are ds too delayed apparently so just leave him and when he suffers in few years well do something then. got a meetingf march with paed, salt, school,hv and fsw, to discuss ds, dunno if i can handle seeing everyone in one room at the same time.

the maj buggy is well secure for him, i struggle to get him out of it, but just want to be able to go out without it and have a normal shopping trip with no meltdowns and without people knowing something wrong wth ds when the see the buggy. tried a crelling harness, he just drops to the floor and wont get up so it doesnt work.

people at his nursery must think, what has she got a buggy like that for, nothing wrong with him, very energetic and can walk and run, but its because of that that he is in danger all the time as doesnt know when to stop doesnt know safety.

Just my thoughts on the issue with no help from salt for your ds because he is too delayed. ...i'd be suspicious of that!!
My ds is next week 4.4, he has a severe lang. delay, came up only 0.3 centile for comprehension on salt assessment. They said his understanding/receptive lang is that of a two years old. That's 27 m behind for his age. And despite his delay he still get salt, DS did get a place in a lang. unit back in early november. I'm not saying that to gloat in any way of course, just to point it out to you...maybe they are not telling the exact truth as to why your ds isn't getting salt.
I would question the reason a bit more, iyswim.

and also big hugs to you. My ds has asd too, it can be so hard i know. Sending virtual chocolates and a strong cuppa. xx

thanks, ds on 1st centile, 20 mths delay, are there other reasons they wouldnt do salt etc, do you knwo any

Hi, sorry you're having a shit time. We had a similar experience until ds1 went to a special school at age 5. It's hard when everything is up in the air and it doesn't sound like any of the professionals are being very helpful. Can nursery/school back you up to get help? I know meeting them all in one room will be horrid but it's probably the best way to achieve anything.

I know it's easy to say, but I will anyway - take no notice of any critisism. Ask your sister what she would do when ds had a meltdown etc, then get her to put her money where her mouth is. People just don't get the effort it takes to do the everyday stuff. Anything like the buggy that makes it easier, just use it and stuff what anyone thinks. For what it's worth, I have a friend with a 'lively' NT 5 year old who says she will keep using her buggy as long as she can cram him in it!

No idea other than too little salt available for too many sal delayed children. Salt are like goldust in my area. And before DS got a place at the lang.unit, in the two previous years (DS has been under salt since age 2), all he got was a miningless 12 sessions of 30 mins. That averaged 3 hours of salt per year!!
Totally useless...

i mean 3 hours what is that gonna acheive in a year

I know it is the pits sometimes. I would keep on pestering them to get some salt for your DS. That's what DH did last summer and finally they filled in the apllication for a place at the lang. unit.
Good luck and keep strong and pushing for help.
Don't give up.

ask to meet up with the nursery mananger and senco and ask how he is progressing through his foundation stage profile.

you need to tell them you are trying to ensure that his transition to yr r is smooth, and that there is some discussion over which setting might be suitable (all true afaik) - then you need to get serious with the paed. ask the senco/ mamager if ds is on school action, or school action plus lists? (he should be listed as 'school action plus' as he has external professionals involved in his development ie slt.) your nursery should be contacting slt and asking her to visit regularly (once a term) to provide meaningful input (not a sheet of paper one a year) is she setting targets for his iep? how many targets does he have on his iep? does he even have an iep? (this will be an important marker for statementing in some leas - children have to show they are failing to meet iep targets)

if ds is too severely delayed for slt/ language unit, then he should have properly trained 1-1 full time at nursery, or be given some sort of early intervention programme (dd2 spent 1 day a week at a pre-school group run at the local special school).

telephone the area inclusion officer at the lea, and explain that you are worried about transition to school. ask her if she has assessed ds in his setting. (she needs to - if he does need a statement in the future she will be involved) - ask her for her help (and burst into tears if necessary - sometimes coll calm and colleted worsk, but if you are beyond that, tears can open doors too).

you can do this sending strength vibes x

thanks so much, ds has no iep in place, and found out few hours ago from another parent of child with sn that paed has left, so need to confirm this tommorow and find out were this leaves us now

so sorry that you are feeling unsupported by family and professionals. my ds is also 4 and has language delays and sensory issues that cause him to display quite "hyper" behaviour.

we just had one of those meetings at nursery, and it was great to finally get support put in place. if you are anxious about going by yourself, do you have a supportive friend/family member who could go with you? i wrote down everything i wanted to say and all the support i felt that ds needed and although i was nervous, it was well worth it to have everyone involved listening and having to say what their next steps would be.

i've become a bit of an Occupational Therapy fan ths week, because we've finally had ds assessed by OT for his sensory issues and she had loads of ideas about how to keep ds calm at home and at nursery. maybe you could ask for this at the meeting too?

all the best. look after yourself and i hope you get the support that you both deserve.