just go a report through saying that my 4yo is at the developmental stage of a 9 to 18 month old.

[himynameisfred]

I'm struggling to read on, it's a bit too depressing.
I know my little sister was a year behind when she was younger, and she caught up.
But my son is nearly 5 and they're saying he's like a baby.

If this is so, then why don't they help?
I have my son at home most of the time, because the school say he's not ready for school.
He's Autistic and repeats himself constantly at home and gets distressed several times throughout the day when I forget specific wording or ritualistic lines he wants me to say, he'll scream, groan, roar, whine.

I'm just so tired.
He's in nappies and so is his little brother whose a toddler, I'm just too tired to do anything.

I have no actual friends, most people around me think my SN child just needs some discipline or I don't bother teaching him.

I spend at least an hour a night reading books with the boys and I play with them during the day, as well as trying to set up my own small business online.

I just want some support.

If anyones around us I just feel like I have to keep apologising for my son growling, kicking, screaming at them.

No body understands :(

I'm really reaching breaking point

Hi fred, I didnt want to read and run although I dont know how much help I can be. I have a daugther (22m) who is about 8-12m old so I know a little bit about how hard it is when you make very little progress and you care for a baby for an extended period of time.
All I could advise is have you applied for DLA? Could you get some child care to give you some time to recuperate? Maybe a nanny or a nursery? Have you got a Visiting suport worker ( I think in England this is portage) they could help you figure out how to get some more support.

You must be exhausted and upset. I hope someone with more experience will be along soon

Hi, I'm female by the way, this is a silly username.

He's in Nursery 2 1/2 days a week. Usually 2, as it's very difficult getting the transport to take him there and expensive.

They're having him statemented so the term after he's 5 (easter) he should get to go to a school.

I just can't get to the childrens' centre, despite really wanting to go.

It cost £14 for a taxi to the nearest bus stop.

That reminds me, I'm going to spend another few hours today trying to get to speak to someone at dial-a-bus.

He gets higher rate DLA and is too young for mobility.

I have a car and will learn to drive soon, just can't drive legally.
Although it's very tempting,
there's not even a park in this village or with a few miles :/

I can't take all his grunting and distressed noises, just want a break, I'm actually praying to god lately, and I'm a bleeding atheist.

I take him swimming once a week when I can afford the extortionate taxi fare. I manage both the children out in the swimming baths with the help of my sister.

DP is busy taking care of his dying mother and we see him breifly every few days.

I just got though to dial a bus and they can take us ito town for an affortable price! Can't believe I didn't do that sooner.

It's not all as woeful as it sounds, sorry to depress anyone.

I'm going to look into what's on at the leisure centre as they have a creche :-)

my younger one could go in the creche while i take my 4yo swimming so it's managable x

Oh goodness, I'm afraid I've nothing helpful to suggest just wanted to say you totally have my sympathy! My son is also quite profoundly autistic and I also don't drive although I do live rather nearer to amenities than you do - I so understand the feeling of being trapped and those awful unhappy vocalisations my son "moos" when he's unhappy and it has the same nails on a blackboard effect on me, as a baby at full blast. And with what your DP is going through too... my husband died when our little one was a baby but at least I had time to adjust to being alone before I had to adjust to ASD. I'm sorry I have no practical measures to suggest but I hope someone will have
x

4nomore you sharing that with me is something helpful!
I'm glad I'm not the only one who can't stand the moans and groans, people expect that I'll be used to it and it won't bother me, but honestly, this morning I could not help him, he wasn't speaking English and doing all these distressed noises.
I just blocked my ears, I considered getting sound blocking earmuffs for when he gets like this, but I'd probably be reported to social services for some kind of neglect.
Just need a good sleep and to keep busy and on top of things I suppose.

I can't believe your loss and what you've gone through, wow. I'm so sorry xx

How old is your son? and what services does he use if you don't mind sharing?
What do you do with yourselfs to get through the days?
And anyone else who has a child with similar difficulties?

Hi myname my ds is alot older than yours so some of this may be out of date.
First off, have you tried contacting the family fund? I know they will help with the costs of learning to drive. It did used to be heavily means tested not sure now think if you get child tax credit???
Are you in England , Scotland? different kind of processes to go through.
At nursery does he have 1-1? What professionals are involved with him? Again years ago for me but you can request statutory assessment for statement yourself.
If he is in a specialist nursery think you can get help with transport ie a bus will pick him up.
Have you thought about schools? Mainstream or special..
My ds is 10 ,severely autistic gorgeous but a noisy boy!! As time has gone on alot of the time I can switch off from the neverending drone sometimes I can't then it is difficult.
Have you looked into if there are any specialist groups you could travel to - now you have contacted dial a ride the best way I coped was to chat to other parents in a similar situation. You get to know all the useful info that the professionals don't tell you about!
Without going into great detail we get a reasonable care package for ds this was accessed via social worker from the children with disabilities team.
I do feel your pain though, remember those early days well.
xx

I have to say that my son is fairly easy going in general, normally he makes happy noises which I'm fine with. He gets stressed sometimes though and it's often very hard to work out what the underlying problem could be and that's when we might have a weekend of mooing . When he was four I didn't really get much of a break from him as the local school would only take him for two and a half hours a day (even when he'd turned 5!) because they couldn't cope with his behaviour (which in the greater scheme of things is not mega challenging). His statement came in the easter just before he turned five and in the September he went to a school for MLD with a social and communication difficulties unit and life's been a lot easier since then. Thst's the upside of a horrible professional report like the one you just received (I had similar) - it will help to get a statement and you will have the choice of trying to get him into a special school if you think that's the place where he should be or an appropriate MS school will hopefully get the resources to help him properly. Not only is it likely that the right school will make him happier (as well as giving you a break five days a week) but if he does go to a SN school, I've found that a whole world of further help and social opportunities open up through that connection. Hang on in there

Hi Elf ,
Yes family fund offered to get me driving lessons, I'm just waiting on a provisional.

My son is in a mainstream nursery, I don't think the staff really understand the situation.
It's been advised in this report (this is a big part of statementing) that he should be in a specialist setting.

I called social services disability team and they said they couldn't do anything for me unless it was in relation to safeguarding. Which I'm guessing means telling them my son is at risk?

I have called the council to have a 'carer's assesment' which they're putting through as urgent, to see what they can help with.

My son had several weeks off of nursery due to having no one to get him there (partner's car broke down). Literlly weeks on end, I called around and no-body could help.

My son has one of the staff at his nursery assigned as his Senco worker, which they get extra funding for for his extra care needs.
This woman is really nice, but she said she doesn't think he's Autistic, just before he was diagnosed, and said he should be given a chance at a normal school, and she even suggested that something at home could be causing his behaviour because he went through a swearing stage.
Basically she thinks we're dirt and knows nothing about his special needs.
And said he plays with other children sometimes, the professionals came in and observed that he 'tollorates' other children with constant pushing from a member of stance, but never wants to bother with them.

Basically, I think he should go to a place were the staff have been taught about Autism, and don't suggest a bad home life behind the parents' backs.

I have a school in mind, so we're working towards him going there, if I can ever arrange the transport to visit there, it's a good 20 miles away.
I'll get back in touch with dial a bus.

Thank you.
I can't wait for him for be able to go to full time school!!
Really can't wait.

Yeah I guess saying he is that delayed will cause them to put in some proper support, hopefully.

We've been through so much, being told he couldn't go to nursery at first, because I hadn't potty trained him, at this point he just had suspected speech delay and was a quiet child, so I was told continually how I had to get him potty trained or he would not be going to nursery. Obviously I tried a LOT

Finally a support worker from the childrens' centre said that wasn't fair and he was let into nursery in his pull ups.

It's like having a disabled child opens you up to assumptions from all angles that you're not doing a, b, c right.
He was even classed as a 'child in need' for a few months, until the social worker said I'm a good parent and they can't help and discharged us.
The nursery seemed disappointed at that and seem to still suspect us of bloody something.

don't be worried about the term 'child in need' it comes from the Children Act and all children with disabilities are termed children in need under the terms of the Act. (doesn't necessarily mean more support, or any support at all! ) the one that means child protection is 'child at risk (of significant harm)'.
Hope that re-assures you.

himynameisfred, welcome to SN.

I haven't got much time, but the first thing you can do, is take control.

You say 'they' will get him statemented. No. No, no, no.

YOU can do that, NOW. Which means that you can write to your LA, using the template letter on www.ipsea.org.uk and start the ball rolling.

If you get him statemented now, he could be given a place in specialist nursery, and the LA would be responsible for travel.

My mistake, Cat, I misread because I was in a hurry, and thought that the little boy was 2.6, so I was thinking 'don't wait 2 years to start statementing!!'

Sorry, fred.

Hi there, I understand how you feel because I'm on a similar journey to yours. It knocks your confidence as a mum as you haven't got a clue how to teach your dc and end up blaming yourself.

Believe this, you're doing your best, its nothing you've done and there are things you can do. Nhs or school are not allowed to recommend treatments or therapy that cost money. Have you heard of applied behaviour analysis (aba). I only found out about it a couple of months ago and my son will be starting on it in feb. He is nearly 5 like yours and it will help you to help him and to leanr strategies to teach him that actually work. Please go to the thread I posted here yesterday asking parents how they think aba has helped their children and you will may be see that there's light at the end of the tunnel.

Don't beliebe that your child won't improve, he will with effort, hard work but especially with appropriate help! You can contact me privately any time. Lots of hugs xxxxx

As far as financial help required for the therapy, there are charities like caudwell that can give you money to help towards consultants costs if your income is below 45000 and direct payments. If you're struggling to find time for your dc and other kids you can ask for an assessment from social services and they will give you an allowance towards help to pay for a nanny (you're not allowed to use this to pay for aba treatments but if this nanny happens to be aba trained then you can just get around it ;). This is how mist people manage to put direct payments towards the cost of their kids treatment. You really sound like you'd qualify for it. Its 10.85 ish per hour and if your dc is in high rate dla you'd have a good chance of getting a few hours a week. Go to the national autistic society page, they've gor info on applied behaviur analysis and also direct payments.

I hope this helps xxxxx