What help can I get now, I need help......

[smugtandemfeeder]

DS is 3 and has a private diagnosis of childhood anxiety. We think he also has pathological demand avoidance syndrome or some other ASD.

We have been told we need to wait 7 months for the NHS assessment centre.

Preschool said we could start settling in sessions for September but so far they havent gone well.

Had CAMHS for over a year. The mental health lady who came was very nice but spent the whole time trying to teach me to think differently about the situation and to stop bringing childhood issues into the situation (WTF)

HV has filled in a CAF form as she says this is the only way she knows of us accessing help. This is going to take ages to process.

SENco has just got involved via preschool and is doing a home visit. What will they do?

Someone suggested the early years autism outreach team locally but they wont see us or help us unless we have an autism diagnosis which we dont.

applied for BIBIC in november 2010 but they didnt get back to me and now they dont have any funding for full assessment. Have requested outreach team but they have a few months waiting list.

What else can I do? We are not coping at the moment. DS goes to childminder one day a week. DH and I are both at home, DH only works two days a week and I am on maternity leave. Even between the two of us we are going crazy.

I have little idea what my DSs needs are so I dont know where else to turn.

I have another appointment with the pediatrition who reffered us to the assessment unit. IS there anything I can ask him to refer us to in addition to the assessment unit that might be quicker. I just need help but I dont know what questions to ask or who to ask. Im so muddled with all the different avenues and specialists and SENs.

Thank you!

Sorry to hear you're finding it so hard. It is hard.

First of all you could choose to assume your child does have ASD and start researching what treatments / therapies you would like to do with her.
All of this stuff has to be done privately whether or not you have a dx.....

The options available to you partly depend on how much you can afford, partly depend on where you live, and partly depend on what you feel comfortable with......

Secondly, do you have a local NAS group? You don't need a dx to attend a local support group.

Thirdly don't think about in terms of her 'needs' - but rather in terms of her 'problems'. What is the one thing that is the biggest problem for you at the moment. Is it screaming? headbanging? smearing? spinning? being withdrawn........

Then research what you could do to help that one problem. Research all over the net, discuss it with us, etc

Then make your decision and start to work on that one thing.

Then after a few days / weeks / months evaluate if what you're doing is working.........

Fourthly, apply for a statement yourself.

Everything moves slowly in the SN world - but especially statements. So apply now.

Fiftly, you can get a dx privately if you want to.

If you apply for a statutory assessment then 'professionals' will crawl out of the woodwork. They can't just agree or disagree one without evidence so they'll turn up to see your child and you. This is where you can quiz them loads.

Thank you. I cant even seem to find the energy to write a letter at the moment. I have one on the computer but they wont accept it by email and I cant face getting the printer out of the under stairs cupboard. Sounds so stupid and awful when it will help my son so much. Must shake myself out of this and just find the strength to do it.

I cant even think of the behaviours we need to change.

Screaming
Hitting
Resisting all demands
Not sleeping
Screaming to be breastfed. Massive problem now. I thought I could do child led weaning but he is taking the piss. Screaming throughout the night for it and waking the baby on purpose if I say no. I feel like I dont know what to do about this one. It provides him with security and is obviously a massive worry for him but it is getting out of hand!!!!! I just dont want to make him feel more insecure.

Oh smug, this is the very worst it gets. Your and your ds' futer are NOT bleak, you just have to figure out where you are and where you are going and it is frightening when you don't know, but you will soon.

Where in the country are you? SOmeone might have some suggestions about local support.

ok, agree with Star - this is thw worst bit.

yes, apply for Statementing - it will get you in the system, and "known"

you can self refer to Portage, usually. ours was not a huge help in terms of dealing with dd1's behaviours, but our Portage lady was a godsend for taking eg SALT to task (she saw her often at the preschool) and going in to bat for us in TAC meeitngs, or standing up for us when all at the LA were trying to ride roughshod over what dd1 actually needed - so not much practical use (for us), but huge emotional supprt for me - I would have lst the plot without her, tbh.

Early years Senco can also be a self-referral service (depends on area) - this may not necessarily be the same as the Senco from your preschool, so you oculd investigate this. Senco from school obv knows the pre-school and staff set-up. Early years Senco is an outside adviser, so may have more knowledge, may not. ours was a little wishy-washy, but again provied excellent support for us when we were applying to schools - came to meetings, did a good hardline on the DDA front, and eg rebutted any suggestions that dd1 need be fully toilet trained before starting school - useful to have onside.

Write the letter by hand if the printer is an issue. Just copy out word for word what's on the pc and post it off. (Recorded delivery??)

It's thoroughly ironic that I have been obsessed with child led everything baby led everything and now I have ended up with a child with pathological demand avoidance who wont do anything we ask unless he wants to or unless it is his idea. If I wasnt so damn tired I would laugh.

Its just a particularly bad day as I was woken at 3am by DS screaming that he wanted me to bfeed him but he was too scared to come out of his room because he had had a nightmare that things were biting him or something. DH was in bed with him but was too tired to carry him through. I had baby in bed with me and was too tired to move either. DS then proceeded to scream and scream and scream and wouldnt stop bfeeding without screaming. We all got up at 5am when he woke the bloody puppy up and the baby up for good. He carried on screaming to be bfed all morning so DH has taken him out swimming before I threw one of us out of a window. DS keeps saying "Im just scared you are going to take it away" and of course becuase he is being so demanding that is exactly what I want to do now. Phoned la leche league in tears but they just suggested I go to their toddler bfeeding group locally which seems like such a battle to make myself go to. I can just imagine the utter pasting I would get if I posted "AIBU to keep breastfeeding my toddler?" outside of the special needs board.

Im in Bristol. South Gloucestershire.

Smug, you're not the only one. I am training to be an 'attachment parenting' specialist and my psychology degree distertation was on emotional literacy and it's importance for hapiness and sucess, going on to have children who I would try to get to be as emotionaly literate as possible - er ASD anyone?

You'll always find reasons why SN has thrown you off path and disrupt your beliefs. However, I want you to be clear that as an 'attachment parenting trainee specialist' I can tell you with certainty that nothing you have done has given your DS SN.

Not sure if 'baby led weaning' is going to be right for your DS. :(

He has 'special needs' - which means, by defn, that he needs some things to be done differently.

I think you should concentrate trying to improve the feeding situation for now.

Obviously you don't have man choices - but you do have some.

• Go cold turkey and put up with him screaming for days and days on end
• Go even colder turkey and check into a hotel so that you can't feed him
• Keep breast feeding and not sleeping
• breast feed only during the day/night/??
• DH check into a hotel for a night or two so that at least one of you has had enough sleep to keep functioning......
• ?

I don't know. Maybe someone else will have some other possible solutions?

Obv there aren't any easy solutions - otherwise you would have found them.

Sorry I can't be of any real help.

Right well I have summoned the strength to write out my statement letter. Why that seemed to hard I dont know. Anyway thanks all, I have done it. Now I just need to post it.

Star, I try to do attachment parenting and initially wanted to cosleep when he was a baby but my little PDA baby wasnt having any of what I wanted to do.

I need to think cleverly about the bfeeding I think. Go into overdrive with distraction, never sitting down, going out lots, oh i dont know.

Perhaps you can look at what feedings are most important to your DS. Are there any that are the absolute most important to him? Say for example, just before bedtime or naptime? Maybe look at keeping those feedings, but cutting back the others, if you're looking at weaning him. Try expressing breastmilk into a cup and having him cuddle with you at other times and drinking the breastmilk from the cup. Then you can slowly move him from breastmilk to milk in the cup, retaining maybe the feed just before bed. Then eventually you can ease him off that one as well?

If he's afraid you are going to take the feed away, maybe it's a security thing for him? That's why I was wondering if the breastmilk in a cup whilst cuddling him would provide similar feelings for him, but help with weaning him.

Sorry, not sure if that helped at all.

How about practising saying 'no' to feeding in a controlled way when it is safe and convenient to produce a tantrum, just to get a grip on him learning the skill of dealing with refusal.

Perhaps start by saying 'okay quiet waiting and then x'. When he screams and screams wait for a pause for breath, interpret that as 'quiet' and say 'well done, brilliant short quiet waiting, here you go'. Do that every time that it is possible, and then extend the periods of waiting. He'll know you're not refusing as he'll get it.

Eventually (and it is important not to rush), you might be able to say to him 'wait until morning'.

Just an idea!?

Thanks Triggles, he looks at me as though I am mad if I try to give him expressed milk. Says it is dirty. Its defo a comfort thing. Trouble with the PDA is that if he gets any hint that you are trying to stop something he goes into overdrive trying to make sure you dont stop it. My DH has been arguing with me saying that I will have to stop in front of him and I wonder if that has made the anxiety or PDA worse. I have tried having a day where I reassure him its not going and trying reverse psychology of asking him if he wants to feed all the time so it isnt withheld but he just smiled and said yes. Traditional dont offer dont refuse isnt cutting it. My instinct tells me that cutting cold turkey would probably make him so so so much worse but perhaps I am wrong. Just dont know.

Star that is a good idea. I will try that. Im too tired to think, but that is where you all help!!!

At first don't make him wait more than a second or a couple of seconds. You want him to get used to 'getting it right' as easily as possible.

I do think a quiet word with your DH regarding discussing it in front of him might be in order. Does he realise that your DS is possibly taking some of his cues and anxieties from what he may be overhearing? I know it's difficult, as God knows DS2 always seems to be hearing things he shouldn't, but we do try to keep most of those discussions out of earshot.

Was just about to Triggles when things took a turn for the worse. DS just lifted puppy above his head and slammed him into the ground. DH now at vets to check if puppys leg is broken. OMG. I know it is our fault.

Oh no. Hope the puppy is okay. How is your DS? Does he realise what has happened? We're looking at getting a puppy in the autumn and are trying to stress the whole "gentle hands" thing. (we figured autumn as he'll be back in school after summer break and it will give the puppy some down time without children while DS3 is napping).

puppy is ok. Vet doesnt think it is broken. Thank goodness. So scary.

DS is very excited about puppy and wants to play with him all the time. Puppy equally wants to play with him. Spent ages explaining to him that you have to be gentle with puppies and lift them carefully with two hands. Obviously he has no idea what we are talking about.

We have a crate for the puppy to keep it safe. This is essential with DS to give the puppy a safe place. We did have a rule about not getting the puppy out of the crate unless we could monitor it closely but obviously we didnt do that today.

Sounds as if puppy is okay. So a scare, but everyone is okay at this point. I'm sure I'm going to be stressing when we first get our puppy too, so I can see why you're upset over it. I'm probably overthinking our situation, but we're starting with RDA riding, so he's getting used to being gentle around horses. I can see your point about the crate - good idea. We've got safety gates all over the house, so we'll probably make sure the dog has a safe haven in another room with a gate on it. It sometimes seems like so much extra steps for everything, doesn't it? I often wonder if I'm over analysing things.

hi did i miss this i think ive read all the threads but are you (i presume you are) breast feeding the new baby is this making DS jealous hope im not out of order asking here and is it possible to stop early breastfeeding new baby (i know terribly not ideal) and telling ds matter of factly its all gone as logically he will think if you had some you would be feeding his new sibling wouldnt you , also i think the idea of cold turkey (with earplugs for you) and hubby stay away for a few days or vice versa you go away for a few days to a relative with baby i mean god forbid but what would happen if you went in hospital or had to go away , just ideas all probably no good but you could get someone to stay with you for support and spend it being deffened but keep reasuring him , how about something clothes wise of yours that smells of you as a replacement to hug at night , very difficult one i had much trouble getting my son ASD out of creeping into our bed and staying put for a long time a lot of screaming sleepless nights but one things for sure they do eventually grow out of it lets hope for you its sooner rather than later

Re bf, may be you could try what I did, covered up my breast with yellow turmeric powder which put dd off bf and we moved her onto solid. It has a bitter test, but not harmful for children. If you want to stop completely, then do it until he gives up on it, if you want to continue, then only do it when you don't want to give in.

Thank you smile. I have a 9 month old and a toddler. Toddler has all sorts of ishoos, not sure how much jealousy plays a part but it might be one factor. He was the same before baby was born though. I have tried using role play today to teach him I am not here all the time to feed him and not at night time. Also trying the idea that he must be quiet. Will see how it goes.

I have done well today, I have written statement request letter and put it in an addressed envelope. Have also finally phoned to request DLA form. Progress.

someoneoutthere I think that wins the prize for most innovative suggestion. It made me laugh too so thank you. It did help once when DS thought it was dirty he refused to bf so maybe I could work on telling him its dirty.... Its just such an unknown thing with the anxiety, I just dont want to give him a break down bless him.