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Going round in continous circles need as much advice as possible please.

(20 Posts)
shazzarooney99 Tue 11-Aug-15 17:29:40

Ok deep breath, i need some advice, my son is almost 8, hes been in the system since around 3 years old, he had his 2.5 year check from health visitor at 3 she said he had developmental delay, we went to the docs who said he also needed to see Salt.

Since the age of around 6 months he rocked from side to side at every oppertunity, he still does this now, he always screamed in supermarkets and kicks off in them now, as soon as he could stand he would jump up and down and flap his hands which he still does when excited.

Hes never really played with toys only just lines them up, and was very repetitive in speech to the point it would drive you insane.

Anyway fast forward hes saw audiologist and hes got noise reduction hearing aids, saw a private Ot whos basically saying he has Spd.

WEeve always had behaviour issues however now hes having full blown meltdowns that are very agressive and him saying he wants to kill himself and him trrying to harm himself at the same times, been to Cahms and they say hes low to moderate risk because im always there on top of him.

Senco has been off quite a lot, so pead has had no info from school, now senco is back and the peadatrician has gone off on maternity which could effectivley be a year that shes off, it is also in his notes that if his behaviour were to continue hed get a written diagnoses of Asd, went pead last week and basically been told his hands are tied as hes covering and his normal pead knows him better!

I has to go into school and show them not so long back what hed done to my arm, where hed bitten me and scratched the hell out of it and basically told them id had enough!

His teacher has basically said hes on the spectrum and hes like other children shes worked with that are on the spectrum but now shes left.

So where do i go from here? do we spend another year in limbo? or is there actually anything i can do?

Anomia10 Wed 12-Aug-15 11:54:13

Well, I know of other parents, who have taken their child to see say Margo Sharp or Richard Soppitt (a consultant child and adolescent psychiatrist, who does private work for Tribunals) and have come away with a diagnosis of ASD. So, it is quite possible for a professional to diagnose a child, they have never met previously - its a question of the right formal and informal assessment.

IMO, the paediatrician is talking nonsense to say his hands are tied, because the regular paed knows ds better! His hands may be tied for some other reason; like the LA have asked him not to diagnose ASD, as it will cost them money in terms of provision, an EHC plan, etc - but that is not a valid excuse either!

AYearofMinorMiracles Wed 12-Aug-15 16:18:44

It is total rubbish, isn't it, when services play ping-pong with your life? angry

I'm with Anomia - DS2's ed psych (private) told me he was on the spectrum and recommended Soppitt for a diagnosis.

The high anxiety that underpins a lot of the behaviour can be treated. Do you have any adapted CBT offered locally?

It will get better in some respects - DS2 can now tell me how he is feeling and why, which is so much easier than having to guess the triggers.

Have you thought of collaring the paed and asking for a second opinion, given he won't give you one; I have heard the Maudsley in London takes referrals.

shazzarooney99 Wed 12-Aug-15 21:12:42

Im not sure about the CBT to be honest, i think im gonna have to push through school or go back to the Gp whos told us theres nowhere else we can be refered and perhaps ask to see a consultant who actually specailises in autism. Thanks for the responses x

Icimoi Wed 12-Aug-15 22:58:32

Would the school support you in a request for an Education Health and Care Plan? If so I suggest you do that as soon as possible.

Anomia10 Wed 12-Aug-15 23:24:08

Enquire about the Newcomen Centre?

AYearofMinorMiracles Thu 13-Aug-15 08:28:39

You have hit one of the big brick walls.

There are no services = We have no services.
There is nothing more we can do = We don't want to spend the budget. There are children who are in a worse situation than yours = You are a hysterical and demanding parent.
There is only mainstream = My name is Pinocchio.
We don't statement for that = We are ignoring the law.
Your child is managing = We are still ignoring his/her needs because we can.
Cynical? Oh yes, indeed. And each time it happens, it still shocks me.

Have you spoken to your local autism group? Ours knows what is available and what isn't and will tell you how/where to access other services.

You may well already know more than your GP so you might need to have a plan of action you want their help with. So ask your local group which consultant any of them have seen. Have you spoken to a local specialist school - sometimes, they have leads to follow too.

Keep going - be kind to yourself.

zzzzz Thu 13-Aug-15 10:23:33

In what way will a diagnosis of ASD (or anything else) get you out of "limbo"?

What did you expect school to do when you went in and said you'd "had enough"?

I feel your frustration that your son isn't what you expected but am struggling to see what resolution you are looking for?

Let's say you get a dx. Let's say you get and ehcp that ensures ds is supported at school. What would change for you, or for him?

Regardless YOU are likely to have to provide 99.9% of the support at home with limited resources. The violence may continue for many years or indefinitely. It may escalate. How are you going to cope with that? What have you tried and what could you try?

This is the reality of raising a disabled child. I would be very careful about what you waste your energy on.

shazzarooney99 Thu 13-Aug-15 12:05:14

Ok if my son had an Ehcp and received help in school then perhaps he would not have as many meltdowns as soon as he walks through the door from school.

If he did get a diagnoses perhaps we may actually be able to access services which we do not have access to at the moment.

How am mi going to cope with the violence at home when it gets worst? yes he will get bigger and stronger however i still have to a duty to protect myself and my family and his violence is pretty off the scale as it is, only a few days ago did he throw a book full belt at my head and the corner of it hit me hard, then he threw a wall paper scraper which cut all my back, then yanked loads of my hair out as well as kicking and punching, i cant see how thing can get any worst.

We have a sensory tent with sensory toys, we also have other stuff in place, we have a visual timetable, a feelings chart ect.

2boysnamedR Thu 13-Aug-15 12:12:04

You could look on the nas website and see who diagnoses in your area then ask for a referral via them.

Or complain to pals?

Having a dx might help. Personally I find I need to know what I'm dealing with. Having years of people telling me "he's a boy, he's a second child, he's lazy, you talk for him, they all grow up the same in the end" can be more easily rebuffed when you know it's pure crap.

My son is none of those things. He's never going to grow out of it, he's never going to be the same. Never.

He's never going to respond to standard parenting. If I hadn't pushed for a dx i would possibly be shouting at him to buck his ideas up every day as that's what works for lazy little boys surely?

But he's not lazy. He's tried very hard with a high IQ too.

Once I got my head around that we was all a lot happier.

shazzarooney99 Thu 13-Aug-15 12:15:50

I think thats part of it too, knowing what your dealing with, i just find it all hard to get my head around, i am also being told my son has autistic t5raits, No i am sorry but this is not just autistic traits, its more, i think as a mother you always know dont you.

zzzzz Thu 13-Aug-15 12:36:05

So the EHCP will help reduce his anxiety at school and make after school easier. I think this is a reasonable assumption. Have you applied for an EHCP? Have school? What support DO they provide? Gather every single piece of paper you have on him, and ask to be assessed.

What services do you get access to with dx in your area? This is often a driver for parents but in my experience is a bit of a mirage. From what I can see there are NO services available outside of school. Ask and see what is really there and then ask point blank if you can access it (if there is anything) while you wait for dx.

Things CAN get much worse. There is nothing to say that his violence will escalate but realistically a 7 year old seeking to hurt you is NOTHING like an adult man seeking to hurt you. Your approach HAS to be sensible and holistic if you are going to manage. He is not going to wake up one morning with a happy school life and no issues. REAL disabilities do not disappear, they morph. Start educating yourself in how to cope.

I find keeping a diary very helpful in trying to unpick behaviour that is holding ds back. I'm not great at pen and paper but a snapped photo and a few lines builds a picture.

7 was a very difficult age for us. The gap widens as you leave KS1 behind and expectations rise. However ds is a much happier 10 year old and we have happy times.

nb paint scrapers should be locked away as you would for a toddler. Maddening but the reality of raising a child with emotional delay is a safe environment is not age appropriate it is stage appropriate.

2boysnamedR Thu 13-Aug-15 13:00:33

My younger son does have ASD. My older boy has always screamed asd to me. I have had hell getting any form of acceptance from the nhs or school. I went private this year. He has asd traits and scores over the asd criteria but he is missing key traits. I treat him like he has asd, it really helps and I will continue to do so. I think when hits 11 we might be looking again to see if he then does develop more social issues. But knowing really helps me and our family. Dh is on board, he does as I do. In laws have backed off with stupid comments etc.

School are starting / trying / doing the recommendations from OT now. Because it's not all in head, I'm not a neurotic mum, it's down on paper.

Ds was at five a real danger to his and family life. He almost killed his brother once and himself three times in a period of six months. I was desperate for help but got none. He had a meltdown where I feared he was going to have a seizure.

I had a lightbulb moment and things have improved so much since. I realised he needed a totally different approach. He needed me to cater to his needs differently. To live within family rules but via a very different approach to disapline.

That come from listening to your gut. But it's nice to be backed up by the NHS as it can all fall apart if your dh, school etc don't get on board.

So if you strongly feel he has asd, treat him as if he does. But still pursue a diagnosis.

School told me once my son would never get any help. That is the polar oppersite to life for my son now.

Yes you will ultimately alway be the main and sole therapist for your child. But people don't listen to a parent. They listen to a nhs doctor.

How do you get advice on dealing with ASD unless you seek advice knowing what the diagnosis is? No one is born knowing how to deal with asd.

Also living with not knowing for 5.5 years for me was a cloud over me personally. Even though I was sure, I wondered every day. Turns out it isn't asd for him, but those key traits do add up on top of other diagnoses. He is very complex child. I needed the help figuring him out. But now I feel I really know him for the first time in his life. I know him like the back of my hand

shazzarooney99 Thu 13-Aug-15 13:06:38

No i havent applied for an Ehcp, he has a diagnoses of Hypercussis and sensory processing, he is down for a sensory group at school and has an Iep, however his teacher was sitting on his table a lot helping but now shes gone i dont think he will get any help.

I have every single piece of paper in a file which i have been saving as well as his home school diary where teacher has written why she suspects hes on the spectrum.

Im not sure of any services in our area as i havent been told, i have tried googling but dont seem to get very far, i have contacted the Nas.

Paint scrapers ordinarily are put away in a safe place, however i am currently decorating the house which is why it was out. everything else is out of reach, im not daft that way.

zzzzz Thu 13-Aug-15 15:26:44

I'm not suggesting you are daft! shock I wouldn't advise differently if you were confused

What I am trying to point out is that dx, even EHCP may not bring you the results you are seeking.

It is highly likely that you can't google support options in your area because there aren't any.

Strangely for me when I realised we were pretty much on our own, things got much better. I am not suited to waiting for rescue grin

There are quite a few on this board who have dealt with challenging behaviour and had success with various methods. All DIY and all free (though sound bloody hard work).

shazzarooney99 Thu 13-Aug-15 15:36:24

I know we are on our own, i have no doubt about that and i dont expect a miracle either, we dont have any support what so ever, no family support, I also work with children with S,e,n so i dont get a break and now we have the 6 weeks holidays i have to redecorate the whole house.

Partner has had a heart attack around 12 weeks ago, hes had no recooperation time, because we still have been having meltdowns and now his nerves are shot.

I just think i am absolutely knackered.

zzzzz Thu 13-Aug-15 15:57:54

Do you want to continue working with children with additional needs if you are dealing with this at home as well?

Is a job move possible/desirable?

Could redecorating be put on hold for a year?

Can your partner access support?

Have you had a carers assessment?

Do you claim dla?

shazzarooney99 Thu 13-Aug-15 17:45:45

No i dont really want to continue working with children with S,e,n i have been looking for other work,its just hard to come by another job.

The redecorating needs done badly as my son has drawn absolutely everywhere and it looks a mess.

My partner access support? he was seeing a counseller but shes gone off sick, now hes discharged himself because he cant even get out the house.

We havent had a carers assesment i diddnt think there was any point not really having a diagnoses.

I claimed Dla for my son last year purely as i was totally broke as i dont get paid in holidays and stuff.

zzzzz Thu 13-Aug-15 17:52:52

Could you use the dla for some help at home?
Surely if your partner can't leave the house he could claim dla as well?
I think you need to talk to someone about what financial help is available. If you are doing significant amounts of care (which you must be if things are as you describe then you may be eligible).

DLA is to offset the expense of having a disability and should be used to support your son and the family. I would be looking at off loading some of the drudgery so you can concentrate on ds OR paying someone for some respite. Do you still receive it?

youarekiddingme Thu 13-Aug-15 21:31:43

Plenty of wise words already on here.

I'd also add is there much point decorating if it's going to get damaged or drawn on again? I know you may feel like it should be covered up and it may be hard for you seeing it as it is but its just wasted energy you probably don't have right now.

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