Here some suggested organisations that offer expert advice on SN.
I need your collective brain power - is there anywhere I can throw myself on their mercy and get a private DX(33 Posts)
here I am moaning again. I am desperate and really can not do this anymore. It is intolerable at the moment. I cant just wait on the mercy of the NHS anymore I feel like our lives are being ruined. We dont have any money. Is there anything, anything at all I can do to take DS to an expert and get him properly assessed and diagnosed. My nerves are totally shot, DS is miserable, he has gone from one screaming hitting throwing episode to another. He is just nowhere near manageable.
I need to know what is wrong with him. I really need to know. It is killing me. I just need to know. It may be ASD it may be something else but I need someone to just help us.
Is there anywhere I can go, anyone who can do this without being paid a fortune?
Essex but I will go anywhere I can afford to get to.
I dont know what that is, will google it
My daughter's paed did her dx - he's fantastic and very switched on. I will send you a link to his website. Thing is,he's in the north-east, so might be too far for you.
His prices are much lower than other consultant paeds, but I completely understand how it can be a struggle to find the money. We put it off for ages,to be honest. I wll go and find the website and post it. x
thank you. If I can somehow get the money for the DX then paying for getting there should not be any harder.
Here is a link to the website
I highly recommend him, if anyone else is interested.
HereI - I found the period pre-dx was the most difficult, so you are going through one of the toughest times. It really can get better.
My heart goes out to you when I read your posts, because I remember how worried and stressed I was before dd's dx.
If you need to talk, just shout up.
I totally get how frustrated and stressed you are by this. Pre-dx is awful...but you are being seen; you are on the NHS path to assessment and possibly dx. Remember, the dx doesn't necessarily bring with it the help - and that is what you are saying you need right now: help, not a dx. A dx will not make your ds any easier to handle or change his behaviours.
The help will most likely only be forthcoming with an NHS dx. Here, all the ASD support, educationally, social services wise and in every other intervention way, only comes for children with NHS dx's. So you could spend loads of money on a private dx (and I seem to remember that you already have a sort of dx from someone, so it's not like you'd just be doing it to confirm that your suspicions are rational, because you know that they are) for no good reason. You'd know but you already almost know, so why do it?
I know you mentioned that you are struggling for money, so you need to really think about why you'd be doing it. I would say spend your money on finding out more about how to help him, practically. Find out about courses, like NAS ones; attend them; buy useful books, useful SN resources...even buy in some babysitting to give you some time away from him and some time to calm down a bit. I do think that you sound very stressed and are getting a bit caught up in a private dx and fixating on that as the thing that will make everything all better. It won't, being brutally honest. You calming down and being able to focus on how to help your ds with focused behaviour management will help more, for now. An ASD parents' group might help - mine is a great source of advice and support.
I am a fine one to talk! I am really not calm about my situation at times. But I have learned to focus on what's useful and has a point, and to try to be rational about what I'm fighting for. My J, now 7, is horrifically violent and always has been - there are similarities between them in many ways, by the sound of it - and I know how desparate and isolated you must feel. It's horrible. But he has a billion diagnoses and none of them actually helped him change or did anything except help me understand where the behaviour was coming from a bit better - the autism dx, especially. But it sounds like you know you ds pretty well, and where the behaviours come from, a lot of the time, and so your time might be best spent looking at books on challenging behaviour and autism and looking at the strategies and case studies to try to work out how to deal with these behaviours. It's the only thing that's worked to ease things here a bit - lots of scripts for angry times, lots of social stories/ timetables/ clear rewards and consequences and never never giving in once I've said something has to happen!
All of the ideas above for spending your money will be, IMO and IME, far more useful than a private dx, which will not really bring you anything more than you have.
I know that it's really hard at the moment and you must feel exhausted. But please please focus your energies where they will be useful. xx
I agree with givemesleep - about spending money on things to directly help him, rather than on diagnosing him. Possibly you might consider seeing a private OT (occupational therapist) to see if/how far sensory issues affect him. also MNetters have found bibic very helpful, they also have a means tested bursary type fund, depending on what you/dh's income is. I think bibic is www.bibic.org.uk. Bibic doesn't diagnose, but will give you lots of advice for things to work on with your DS.
siblingrivalry, thanks for the link, he does look like a very good doctor and the rate is extremely low compared to what I was told by someone before. I will look into that, thank you.
givemesleep, thanks as well for the thoughtful post. I know what you are saying, I appreciate you saying it too. But I just am not confident he is autistic. I see all the similarities between he and many of your children who are ASD but when I read the criteria for ASD on official sources he doesnt seem to fit so well. I know I am not an expert but I am a reasonably intelligent person on the whole. I know it is not down to bad parenting, not that I am a perfect parent by any means as is really obvious. But I know it. I just do. There is something wrong with him. And I would say it was severe rather than mild, even though he often seems perfectly "normal" and lovely and fine. It is just so very important to me that I know what is wrong. He is so violent now, he is throwing his bowls at me, hitting, shouting in a nasty voice, anything. I am flinching around him. I am restraining him and doing all of the things recommended here. But today he was doing it again and again and I was restraining again and again and then I let go again at the right time and he turned and punched me in the face. And truly for the first time I burst into tears and ran out of the room. Then of course he was crying and saying he needed me and was sorry and loved me. And I just feel like we are as a family drowning in sorrow. I am struggling. It seems to me so many of you are so competent, you have children with ASD but you arent seeming to question how life will ever carry on. And for me, I am. He screams from waking to bed, he is always falling, hurting himself, screaming, hitting or throwing. And when he isnt, great. But I am so shattered I'm finding it hard to be happy.
So that's it. I know you are right. I know we can spend our money on other things. But I just would kill for someone to tell me what is wrong with my son. I am afraid of convincing myself it is ASD and being wrong. I want someone I can trust to be an expert to tell me.
thanks TC I'll look at that. I found a site called www.turn2us.org.uk/default.aspx and they can put you on to charities to give grants for things. I'm looking into possibly getting a grant for private DX. Have applied for the vegetarian society one If you think that is strange there are 2 just for children whose parents work in retail! Funny my DH works for the NHS, so ironic.
i agree with givemesomesleep, i havent got an NHS official diagnosis of ASD and im not sure if my son meets all the triad of impairments, but he certainly displays autistic behaviours and obsessions and can be extremely vocally violent.
I phoned the national autistic society and had an hour long chat with a lovely lady, who listened, gave advice and sent me heaps of info on how to manage the behaviour and how to use visual supports. This was a month or so ago, ive been building up a envelope full of small photos and setting them out for the day as to what is happening (apparently ASD children get anxious if they dont know or cant figure out what is happening next), this has really helped my son. Me and my mum are making conscious efforts to speak clearly and make sure my son has our attention before speaking and being very careful what we say!
I am sticking to what i say with him, not mucking his agenda about for the day and trying to see it from his point of view more and be more understanding. He is still violent and only tonight went off on one, called my mother a bitch (he had just spent a lovely few hours with her at her house), hit whatever he could get his hands on including myself. I had to sit him on my lap and hold his wrists while he was still kicking me and trying to back headbutt me. ended up with my legs wrapped round his and telling him when he had calmed down i would let go. I did and he carried on so i held him again and he stopped hitting but i had to quickly shower him while he was still screaming his little head off. He DID say sorry to my mother, which is a huge positive, as weeks back he had an aversion to say sorry so even though he had been violent the fact he said sorry meant a lot to me.
Im sat here now looking at his "cafe" in my living room which has been here all week and i am not allowed to move it, if he woke and it had been put away that would cause another tantrum, so looks like its here to stay till he gets obsessed with something else.
hereidrawtheline, the violence is awful and i totally sympathise with you, i really would recommend phoning the NAS and getting all their info sent, you can try out all their strategies while you are waiting for your next apt with the psyche.xxx
"I see all the similarities between he and many of your children who are ASD but when I read the criteria for ASD on official sources he doesnt seem to fit so well."
Which areas don't you think fit? Communication impairments, social interaction impairments or routine/ obsessions?
"But I know it. I just do. There is something wrong with him. And I would say it was severe rather than mild, even though he often seems perfectly "normal" and lovely and fine."
And nobody's dismissing that something is wrong, not even the NHS. They're just taking their time to find out what is wrong.
"It is just so very important to me that I know what is wrong. He is so violent now, he is throwing his bowls at me, hitting, shouting in a nasty voice, anything. "
But knowing what is wrong via a private dx or otherwise won't stop him doing those things.
"I am flinching around him. I am restraining him and doing all of the things recommended here. But today he was doing it again and again and I was restraining again and again and then I let go again at the right time and he turned and punched me in the face."
I'm going to be really blunt - you didn't let go at the right time then, cos he wasn't calm if he then turned and hit you. You often talk about how close the two of you are and how you don't like doing things that upset him - perhaps this is affecting the restraining. You feel bad about doing it, so let him go before he's actually calm. I have to restrain J a lot and a wrap in a duvet with his head out of the top works in cooler weather, but he has to be held in front of me otherwise, and it can last for 40 mins, until he's calm. He will cry and scream and spit and try to headbutt and bite, but he and I both know that he needs holding till he calms. J has massive sensory issues and needs that holding to be able to reach calmness. Sometimes you're going to have to do the things he doesn't want you to do, like leaving him in time out or restraining him, because he needs it even if he doesn't like it. And that is hard.
"And truly for the first time I burst into tears and ran out of the room. Then of course he was crying and saying he needed me and was sorry and loved me. And I just feel like we are as a family drowning in sorrow. I am struggling. It seems to me so many of you are so competent, you have children with ASD but you arent seeming to question how life will ever carry on. And for me, I am. He screams from waking to bed, he is always falling, hurting himself, screaming, hitting or throwing. And when he isnt, great. But I am so shattered I'm finding it hard to be happy."
it is rubbish. But most of us have been there and do understand. I constantly question the future and how long J will be able to even live with me if he carries on being so violent as he gets older. But a lot of people have said to me recently that I need to try to live in the now more or I'll go mad, and it is true, and true for you too. You can't predict what's ahead. You can only live in the here and now and do what's best at the time. But do what will have the most effect; the OT idea is a great idea - if you spend your money on anything, an initial assessment by an OT experienced with sensory issues would be far more use, IMO.
"So that's it. I know you are right. I know we can spend our money on other things. But I just would kill for someone to tell me what is wrong with my son. I am afraid of convincing myself it is ASD and being wrong. I want someone I can trust to be an expert to tell me."
Treat the symptoms. You can't 'treat' autism anyway; there's no cure. I know there's ABA and stuff, but every intervention with ASD or any other disability involving challenging behaviour works on the same kind of basis: you look at the problem behaviour, work out why it's happening and then try to deal with it by removing the cause, diverting to a more appropriate response and/ or using praise and consequences to encourage positive behaviour. You don't need a dx right now to do any of that with your ds. Even if it's not autism, the above still applies. Every child with autism is different anyway - you're not missing the 'ASD path' without a dx. You'd still have to do all that with a dx anyway; the lack of dx is not a barrier to improving how things are for you!
You're just making yourself more stressed by focusing on that. Focus on him. Follow the NHS route through, and then there'll hopefully be more support. The NHS psych has said he'll see you again a number of times. You're on the way - so let that one go for now and use your limited energy to make the changes that you can make: giving in less, having more time to rest and be away from him, getting some sensory assessments, getting support from other parents in RL - and I will keep my fingers crossed for you that you start feeling a little happier...but I do know how hard it is and things will sometimes seem a lot sunnier than they do now.
again I agree with Givemesleep's wise words. btw I am no more or less competent than you - my DS's glaring issue has always been language rather than behavioural - so apart from awful sleep I've had a relatively easy ride compared to many on here. I appreciate that it is hard, given your DS sounds to have such good language for his age, to see how he would fit within a communication impairment framework.
Oh HIDTL....I feel the need to reach through the monitor and offer you a large hug, larger bar of chocolate and larger still glass of wine! You are having such a tough time. I am not surprised you are at the end of your tether.
I do see what you mean, you are not sure he is ASD but you can see many of the parallels, and you don't want to effectively "self-diagnose" in case you are wrong. I can also see that you would feel better just for seeing a professional and getting their 'formal' take on things. But what I would say is this - I am in a different position to you in that we have a DX that we are querying, but even though we are in the hugely fortunate position of having money saved that we can use for private referrals we are STILL finding that nothing is going to happen straight away. The earliest we're going to be able to get a private ed psych appointment is likely to be December, for example. So even if you 'go private' you may well not get an appointment in the near future...I can absolutely see that you feel desperately that you need to talk to someone NOW, but unfortunately even in the private system that may well just not happen.
However on a more positive note - the other thing I would add to all the brilliant posts written here is that even if your DS is NOT autistic - and whatever condition /disorder he may or may not have - many of the strategies and behavioural management tips for autistic children could be of benefit to him regardless of whether he is actually autistic or not. Does that make sense? You're not going to do any harm by making a call to the NAS helpline, as brandy77 did, and getting some advice.
Someone once commented on a thread on this forum that in many ways, all the 'specialist' tips in how to manage an ASD child could so easily benefit an NT one as well, and I can see how that would be the case. So even if you apply some ASD specific techniques I cannot see how you would cause 'damage', even if it turns out your DS is not ASD. And they might just help you find a bit of respite. Just a thought...
Take care and keep posting xx
I am in Essex as well. I do know of a good private based paed who works out of Brentwood but I would also agree with givemesleep's post too.
Have you talked to SNAP who are based in Brentwood?. They are very good and may be able to assist you as a family.
If you're looking for a dx I know not
if you're looking for something to do to help try BIBIC as they award bursaries and help with costs
I'm totally with you on this one. I went for a private dx after dipstick psuedo-Consultant from CAMHS mis-dx'ed son with a serious mental illness.
Unfortunately the private Consultant we saw has retired otherwise I would pass you his details.
The NAS helpline keeps details of private specialists who can dx - also look at thei website as they list these by area. There is also the Dyscovery Centre?? in cardiff but I have no personal knowledge of it.
You have my very real empathy - the waiting does your head in - I would have paid anything to put that to a end.
Thank you all
I really mean that too.
After I last posted I had a long talk and really major cry with DH. I mean I really cried. And in that way that it is a relief because afterwards you can feel happy in a way you couldnt before. So I had that cry and I came back here and read this, and your further replies were so great I had DH read it too so he knows what I know and I dont have the added stress of explaining everything to him which has somewhat been the case.
I probably sound like a total loon with my ups and downs but although I am not singing on the hills to the sound of music I feel infinitely better now than I did when I wrote the OP. I have calmed down and I actually feel a little bit happy, and relaxed and refreshed.
I want you to know your time & advice doesnt fall on deaf ears. I'm going to go with the flow of givemesleeps brilliant posts and not waste my energy seeking a faster diagnosis through private means. Just for all the sensible reasons you have given me and now that I have calmed down and feel a little bit less on the edge I can see the sense in them. (See the truly wise ask before they act ) Just to give you an idea (as if you needed one) of my near hysteria DH suggested something earlier, I cant even remember what now, but it was phoning someone on Monday, and I was horrified and upset and said "yes but that's Monday!" As in you must be kidding there are 2 full days between now and then and I would like this solved tomorrow please. Which is clearly madness. But it did highlight to me that you are right what I want isnt a DX I want help and solutions, as in, I need to improve things from tomorrow not continue to live in hell til Monday.
I am going to follow all of your other suggestions - bibic etc. They are all very good.
I have made a couple of decisions today anyway, am making some clearly defined house rules. We are by no means dirty slobs but our house is often messy yet clean. And I have decided that I am almost going to treat the house as I would if DS were blind, by keeping clutter etc and obstacles off the floor so then at least he can only run into the furniture and walls and not those and books etc too. So we are going to treat the house differently. And we are going to keep working and practising the restraining. And start a visual folder as well.
Thanks very much for seeing me through this.
YOu know this shock /mourning hase is normal yes? You'r ereacting as many of us did so don't ever feel you need to apologise for moaning as you did in your OP.
Dyscovery centre also worth a look, don't know them well though couldnsecure you free accomodation 10 miles away (OK our spare room PMSL). Have known BIBIC through college / work/ my boys for 20 years as well. They do offer a free initial assessment, so worth phoning them for that? That's done by telephone so easy to arrange.
Glad you are feeling a bit better today. You are doing a great job. Just remember that you need time for yourself, whenever possible (I know it's easier said than done).
Take care. Have a lovley day
thanks Hope you are all having a lovely day too. Peachy I dont know what Discovery Centre is?
A couple of things, I didnt realise til I googled it last night what BIBIC stood for - brain injured children. And I know this is my supposition but I wanted to share with you what my very deeply held belief is about what caused DS's problems. I wont give you the whole agonising story but in a nutshell at 35 weeks pregnant I started leaking fluid and it was incorrectly DX as a weird show. Each day the leak became more and at exactly 36 weeks was a full gush and I realised I couldnt remember the last time I'd felt him move. We rushed into the labour ward where a scan and exam showed that my waters had actually broken at 35 weeks, so the week in between he had not been in anywhere near the right amount of water and was in distress. They induced me straight away and it didnt start the contractions so they ramped the drip up, then it came on like the fury of hell. Then they gave me an epidural, but it failed. You wont believe this but it paralysed me but didnt take the pain away. So I was stuck on my back, unable to move anything but my arms and head with my feet in stirrups and went through hours and hours and hours of agonising labour with no pain relief. It took several hours to push him out. The consulatant wanted to do a section but the MW said no give us some more time. And around an hour after that point DS was born.
He was always a little different to other babies, he only slept on mine or DH's chest til around 6 months. He had to be in a sling or arms he could never ever lie down on his own. He had terrible colic and wouldnt sleep. It was a really hard time. He was around 11 months when we finally got to the point we could put him to sleep properly in a cot.
It has always - even before the ASD issues came up, I mean back when he was tiny - been my belief that he was injured in some way on that week of not enough waters, then a terribly botched delivery. Now I truly believe to the core of my being, I would stake my life on it, that it has somehow caused this. I cant prove it but I believe it deeply.
The other thing I wanted to say is, this morning I was doing the restraining technique and he was trying to get out etc and I was struck with a pretty terrible thought. THE way DS is retrieved from meltdowns and panic is by getting inside my arms and legs and me rocking him and singing. And that is so valuable as we truly depend on that magic relief. So I think me restraining him might work against us as in taking away the huge good my restraining hold does for him by making it something related to punishment. I dont think I am comfortable with it. Am for the time being crossing that off the list and looking at my options afresh on how to handle his violence.
HIDTL that does sound like a truly horrific delivery - can't believe the consultant let the midwife overrule, it sounds like you should have been zoomed off for a section hours earlier!
Like you I have my suspicions that DS's fine motor and concentration issues may well have been caused by traumatic delivery, nothing like as bad as yours but he was a very scary emergency section due to distress and his heartbeat just went through the floor. I can't prove it either but the suspicion alone is enough to make me opt for an elective section with my second baby (due in a few months) - I'm not risking natural labour again.
If the restraining thing is not an option for you could you consider something like getting a Babydan playpen or similar where DS simply gets plonked in meltdown until he has screamed himself out and calmed down? That way he would still be able to see you but not hurt you, you could turn your back and ignore him and only go to him once calmed down. Just a thought - someone mentioned it on here as an alternative to 'naughty step' or timeout in another room when those just weren't working.
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