If it took ages for your DC to get a diagnosis...

(23 Posts)
NiceCupOfTeaAndASitDown Thu 16-Jul-15 09:55:47

or you are still waiting/trying/begging/have given up...

Please tell me how much you talk to your DC's teacher about what's going on at home...particularly if he/she masks their problems there

my DS's keyworker at nursery has been amazing despite all HCPs telling us there's nothing wrong (because he masks spectacularly and saves it all for us!!) but she just looks at me weakly every time I mention something...For example this morning he had an hour - long meltdown

I tell her some of the stuff we're dealing with because a) I want to see if any behaviours are present there b) I want to know what's happening there to see if it's affecting the way he is at home and c) he's my baby and this shit is way more than a child should have to cope with and I want to know somebody knows what's happening and looks out for him

but every time I tell somebody and they give me 'that look' or say he's just a boy or he'll grow out of it or kids just love to manipulate their parents/test the boundaries another piece of me dies inside...leaving nursery/starting school is proving very very stressful for him and he is in a state of mania or panic 90% of the time he is at home/with us right now and in turn my anxiety levels are shooting up, I'm in tatters...how do you keep fighting for your child when nobody believes a word you're saying??? sad

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Handywoman Thu 16-Jul-15 10:18:37

I'm afraid (in my experience) a diagnosis does nothing to reduce the endless blank looks and dismissals or minimisation of what happens at home.

My 10yo has unbelievably stressful mornings and evenings, at times I feel like having my own meltdown once I've dropped her at school.

There's nobody in my dd's school who understands or really cares, because the dd they see is happy and smiling and compliant and always doing her best. End of.

I'm afraid I just protect myself by not seeking validation where it isn't available, ie I just don't bother telling them. I send my dd in and hope for the best...

Diagnosis took 4years. But has made no difference in this regard.

Next time they try to dismiss what your saying as 'normal' you could try saying something like 'I wasn't seeking your opinion, this is for your information'.

You are the expert here.

whitedoorbell Thu 16-Jul-15 10:52:12

First of all, I really feel for you. It can feel incredibly isolating when you feel like you aren't believed.
Have you tried to go through the Health Visitor or school nurse (for over 5's). I had much more success this way. Rang up and said I was at my wits end. They visited me at home and we talked and then they arranged a referral to Early Years Special Needs team.
Good luck

Glittery7 Thu 16-Jul-15 10:53:50

if they're still at nursery you could have a long haul ahead im afraid.

AYearofMinorMiracles Thu 16-Jul-15 10:54:09

While you are waiting for someone who has lived this and believe me, there are loads of families who have your experience - my DS2 is the polar opposite - I have the relatively-together child at home and school get him in all his blaze of anxiety.

He was dx-ed privately. The LEA accepted it when they had appropriate provision and I took them to Tribunal (twice now) when they tried to put him in mainstream and when his needs changed. It is, in my experience, a fight to have needs seen and then, met.

What is working for us is an amazing CBT therapist. He is making good progress at his special school. He gets SALT and OT as part of school and it is these very experienced therapists who really understand.

Socially, I am about to look at local groups, again. In the past, they have made a real difference to me - it is SO good to be understood - but what I would ideally like is an environment he'd like to spend time in.

I have "seen" him relaxed maybe three times in his life and each time, it horrifies me how tightly wound he is on a day-to-day basis.

It is OK to take time off - as a parent you can't do everything. Prioritise what you think will make a difference and only target that. Everyone I know has doubts - I think it is because we live out of sync with those around us.

The contagion of anxiety is very tough. Can you get some time to yourself?

NiceCupOfTeaAndASitDown Thu 16-Jul-15 12:49:52

handywoman yes this is what I fear. I just feel that a diagnosis would give us some idea of what we are dealing with..right now I can only guess. I understand that it doesn't mean a huge amount of support but I'd know where to start in terms of how to help him. It all feels so confusing and desperate at the moment and he is in such a high emotional state that yes ayear it is contagious; I find it hard to reach a place of calm myself (especially with 2 younger ones there is never any quiet) in order to try and help him find calm. putting him in his room has proved to be the only way to get a meltdown to subside without considerable damage but he runs screaming to the highest point in the room and I have to carry him there (often with another child at my ankles/on me) and I do worry about his emotional well being with a) all these meltdowns and b) being left alone for them to fizzle out. I suspect I have some form of ASD myself and all I want when I am in meltdown mode is to be left alone but as I have no idea what we are dealing with its all guesswork and I am concerned about the long term damage if it's not handled right

so regardless of whether your child masks at school or displays behaviours at school and is 'fine at home - with or without diagnosis is the general experience that teachers don't want to know what happens at home?

The only discussion we've had with the school contained the phrase "we've spoken to nursery and they've no concerns" like I was making it up for fun. I'm already thinking about how on earth I'd cope with homeschooling if it goes disastrously wrong and he hasn't even started yet!

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BatFoxHippo Thu 16-Jul-15 13:19:27

I really identify with what you have written. It is so hard when school/nursery say they are 'fine' and you have to deal with all the stress at home.

Luckily here professionals sometimes do home visits so have some idea that my ds is different at home, although they haven't seen him anywhere near his worst. I think its helped them to accept that he might be masking at school/nursery. We are going to have a meeting with all professionals and school, partly to get the school to accept that he has issues.

Day to day I would say if he has refused breakfast or if I had promised him the staff would call me if he was too upset to stay, just for their info. But not for any validation/support because they don't 'get it'. You have to get used to that WTF look from the teacher. You need to get your support from people who are actually knowledgeable about the reality of SN, ie other parents or disability charity helpline etc.

If you read this thread you'll see there are some schools that are supportive and knowledgable and share info/concerns back and forth with parents. Sadly seems rare though.

Handywoman Thu 16-Jul-15 13:48:29

I've been where you are, nice. It awful. You need someone, somewhere, on board, to at least get the ball rolling at glacial speed.

In my case I had some support from one HV, when dd was aged 4, although others had fobbed me off. Nursery were not interested. Eventually I got a private SALT on board. This obviously costs money, and is not a option open to everyone. But it's the best thing I ever did for my dd2. It revealed what no body else but me could see - that dd's language was severely disordered. It have us a platform for referral to the Paeds, which put us on a 4 yr road to diagnosis. But more importantly it gave me an idea of what to do to help her. That's what you really need because ultimately the help only falls to the parents anyway

I feel for you, OP, keep posting...

imip Thu 16-Jul-15 14:38:44

Dd2 has just turned 7 and I first mentioned to school that I suspected ASD almost 2 years ago. They think that she is fine at school, told me she wasn't and that I probably need to be a bit more strict with her hmm.

The child development centre saw no problem with dd, said she was just trying to be my baby (I have 2 Dds born after her, one before). I felt pretty humiliated to be honest, and yet I knew there was a substantial 'issue' with dd. thanks god I've lurked on these boards, I'd say dd has ASD/pda and spd. Maybe OCD?

At the end of 2013 I self-referred to a local NHS child psychology service. They said she suffered from anxiety and all of last year I visited a child psychologist every fortnight, they refused to see ASD or any other issues apart from Anxiety. But I persisted going, because no one else saw anything. At the beginning of this year, it escalated as dd started self-harming. She was 6. We were referred to specialist cahms. After one meeting, the therapist said she suspected ASD and spd. The sense of frustration I feel is crippling. We were referred back to the child development centre, who have now accepted dd onto the ASD pathway for diagnosis. And now we wait, back at square 1. I was told a 2 month wait. Given summer - we are away for a bit and no school obervation could take place - I'll start following up if I hear nothing. I think school are a bit worried about getting it wrong now, I handed them the cahms letter that articulated their concerns, but they still say they see no sign of ASD. I was dd running across the playground the other day for about 100m flapping her arms ???

So, if they diagnose before the end of the year, that will be 2 years trying to seek a diagnosis. I can't express in words how disparing this process has been and the huge toll on my mental health; the toll on dd, and her sisters who witness her violent behaviour on a daily basis.

NiceCupOfTeaAndASitDown Thu 16-Jul-15 15:44:47

I'm starting to realise 'fine' or 'no concerns' in an educational setting simply means they are not struggling academically or they are not causing significant trouble.

that thread is amazing, I wish all teachers were like that. We haven't even met DS's yet, only a goodbye and hello on 'transistion day' - a wonderful idea but who really thinks 2 hours is enough to prepare a child for full time in a new place?

I'm not looking for sympathy from a teacher, simply an awareness that all is not 'fine' and an eye out for possible stressors during the school day. I suppose even that is a big ask when there's 29 other children to focus on I have trouble with 3

we've seen HV, SALT, CDC where the pediatrician had clearly made up her mind DS was 'fine' before we even walked in and a specialist HV who spent the duration of her visits arguing with me that everything was 'quite normal' and acting like I was a neurotic mother who somehow wanted her child to have an ASD

I'm beginning to think private may be the way to go..any experiences?

I'm not happy with the idea that we just wait for him to fail or explode before anybody listens

with regards to said keyworker (whom as I said has been amazingly supportive on the whole) I will keep it bright and breezy for the duration of the term grin

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insanityscatching Thu 16-Jul-15 16:10:28

I was fortunate in that ds and dd were very obviously autistic and so were diagnosed before they ever set foot in a nursery but the diagnosis doesn't really make that much difference tbh.
Many teachers and SENCo's have little in depth knowledge of autism and their understanding is generally of stereotypical autism and their knowledge of strategies are usually restricted to a visual timetable and a time out spot.
You have to become your own child's expert and research strategies yourself first then you have to become your child's best advocate which doesn't necessarily make you popular and keepa written record of every meeting or conersation with professionals about your son.
Know the terms such as "needing reasonable adjustments" and "practising inclusion" and liberally quote "protected by the Equality Act 2010" and don't be afraid to make Freedom of Information requests under the Data Protection 1998 if you think things are being kept from you which should make you appear as someone not willing to be fobbed off. Also check out NICE guidelines regarding autism diagnosis and if your health authority are failing to meet them use PALS to complain.
Basically shout loud and keep shouting because they will listen and be forced to act if only to shut you up.

shazzarooney99 Thu 16-Jul-15 16:19:34

Nursery? my child caused holy hell in nursery,he ended having a 1-1 and had help most of the way through school, hes 8 now and we still dont have a diagnoses.

The thing is your child is still very young some people have the extended terrible twos.

It does worry me that at this age hes masking his behaviour,hes not old enough to try and mask it to be honest i think if he did have problems they show through in nursery and not just home, when you chld is a few years older yes i would say they start masking it then, but your child is only little.

When my son was in nursery the got the early years ed pych in.

AYearofMinorMiracles Thu 16-Jul-15 18:46:42

But shazza the spectrum is huge and every child is an individual so there are going to be massive differences even with the same dx.

DS's CBT therapist has also said that any input in mid-meltdown is overwhelming and contributes to it lasting longer; so, your instincts are right.

What triggers the meltdowns? Your own experience will be invaluable here.

Can you video a meltdown? Sometimes, seeing is believing.

Have you spoken to your local autism group? Our regional one is amazing and knows the ins-and-outs of what is happening over services and what is available and when you have to turn elsewhere.

Who else in your family gets it? Can you leave all 3 with anyone so you can have the odd break?

Private was amazing. They listen, they look and then, when producing tribunal reports they write it down in black and white which is very hard to read but really makes you fight their corner.

Totally agree with insanity - you have to become that pushy parent who won't take no for an answer. And when you do get a no, you go higher. It is awful that you have to but it is worth it - you will get help.

insanityscatching Thu 16-Jul-15 19:18:22

Agree with Ayear on children presenting very differently. Ds was a nightmare everywhere, most days it was difficult to work out where one meltdown ended and the next began both at home and school.He had constant 1 to 1 support to keep anyone who got within throwing distance safe.
Dd has never ever been naughty in her life, she has never had a meltdown, she does exactly as asked first time every time wherever she is.She has never hit anyone ,broke anything, screamed or shouted and she has the manners of a lady and is the kindest, gentlest, most empathetic child you could wish to meet.
Both have autism though dd was diagnosed at just two and ds at two and a half.

NiceCupOfTeaAndASitDown Thu 16-Jul-15 20:46:25

Thank you all there's some interesting stuff to think about. I'm totally with you about being your child's advocate. and yes it will probably make me unpopular but if it gets him the help he needs (through our knowledge mostly) then so be it I guess

regarding autism groups...wouldn't I be laughed out of somewhere without a diagnosis? I'd love to chat to parents IRL who are going through similar but I think I'd feel like a fraud

So shazza can you explain what you're saying please? that DS is showing signs at nursery but they're not noticing? or that I'm imagining signs at home? I will tell you what I told the pediatrician..my son is bright and intelligent and sensitive and yes he is masking. I see it with my own eyes every time we are in public. He is learning what is acceptable behaviour and what is not. on our week long holiday last year he had a number of meltdowns out and about because there was no safe place to let out all the stresses of being somewhere different. In the company of most others he is a model child, his differences are subtle and it's only when you add them to the bigger picture that they lead to something being 'up' IYSWIM

insanity DS is like your DS at home at the moment, but like your DD the minute we leave the house. on occasion stressors build and he will exhibit erratic behaviour/lack of danger awareness/a meltdown out and about but usually if there's a chance to save it for home he does

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shazzarooney99 Fri 17-Jul-15 07:57:04

All i am saying i think nursery is a very young age to be masking, not sure a child of that would would be capable of masking.

BrilliantineMortality Fri 17-Jul-15 10:31:37

Shazza, I disagree that nursery-age children are incapable of masking. My DD is four and attends preschool . No diagnosis of ASD, but we're fortunate that staff noticed some behaviours consistent with ASD and referred her to a paediatrician. Our initial appointment is next month.

A few months ago DD went through a period of extreme anxiety. There were days where she refused to leave the house at all. On days where she did manage to go to preschool the only way I can describe her is an automaton/robot. She didn't cling to me and cry, but rather went through the motions of hanging up her coat, washing hands and sitting down for lunch as if on autopilot. All very subtle, but noticable to me. I'd tell the staff she's feeling anxious and they'd tell me they will keep an eye on her. At pick up they'd say she'd had a good afternoon. Yet within minutes of getting home we'd be in the midst of a meltdown because ostensibly I hadn't opened the front door properly or other somesuch thing.

Nicecupoftea -please do get in touch with a local support group. I went to one a few weeks ago (no dx for DD yet) and it was such a relief to be able to talk to people who really get it.

NiceCupOfTeaAndASitDown Fri 17-Jul-15 12:22:45

Brilliantine yes this is how DS is at nursery...autopilot. He knows what is expected of him and he delivers. He's never been one for public tantrums etc and I have always been told how wonderfully behaved he is wherever we've been. nobody would (and nobody does) believe what he is like behind closed doors (not badly behaved IMO but very very different)

in public he is either what looks like very shy or will use a funny voice to chat to people or sometimes 'show off' and charm them. It really depends on what's going on for him at the time

I am reluctant to venture to support groups because literally nobody sees what we see aside from close family, and the feeling is that nobody believes it either. I feel that he would benefit from some answers about why he has meltdowns and what to do when emotions run 'too' high, because we have begun to talk about it all with him and I want him to feel that we are doing all we can. I will look locally but I've a feeling the local group will be somewhere I know people and they (think they) know DS and will wonder what on earth we are doing there!

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BrilliantineMortality Fri 17-Jul-15 14:00:53

flowers I believe you.

My DD is like that in public too. Before we started having concerns we noticed that she'd sit very quietly in cafes/restaurants, especially when we were with other children. DH and I were often praised as to how well behaved she was. Now I see this in a different light and she was actually being extremely observant. And yes, sometimes she puts on a funny voice or pretends to be a cat or a dog so she can interact with people.

When you say you think you might know people at a support group, do you already know people with an ASD diagnosis I? If you confide in them you may be pleasantly surprised as to their reactions. Please don't feel like a fraud, because you are not one.

This may not work with your DS, but when DD is in meltdown I sit quietly and offer a hug. To begin with she rejected this and hit out at me. But now s meltdown can often be nipped in the bud as she knows she can have a cuddle and a cry instead. Dunno, what works for one child might be the opposite of what another needs.

NiceCupOfTeaAndASitDown Fri 17-Jul-15 14:38:30

Thank you.

No I don't know anyone with an ASD diagnosis as far as I am aware, but several DC at DS's nursery have 1-to-1 so there are SEN of some description and their behaviours are more obvious than DS. I also frequent the local family centre and know quite a few of the staff to chat to a bit so that kind of rules that out. and I suppose one of my biggest fears is running into one of the people (HVs, portage, SALT, OT etc) who have assured us there's nothing to worry about - I guess part of me is worried someone may think I'm looking for attention when in actual fact that's the last thing I want, I just want to know how to support my DC

regarding hugs/meltdowns - often it might seem like that's what DS wants as he tends to screech that he needs a cuddle or help to calm down. In actual fact what I've found is that any interaction or touch increases the intensity and the likelihood of me/others getting hurt or property/surroundings getting trashed. I want nothing more than to hold him (and have to restrain him if he melts down in public as he is a danger to himself and others) but it just seems to make the meltdown last longer. plus I have 2 smaller children who (I hate to say it) need protecting from him. I hate that it has to be this way sad

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bitbap18 Sun 19-Jul-15 21:23:22

We had very similar and it took 5 years to get DD diagnosed. It most definitely is possible for a child to mask at that age, we have experienced it, and continue to everyday at 7 years old.

School did not take us seriously until diagnosis, and to some extent still don't. She is very high functioning/Aspergers and school suits her perfectly for the routine etc. she is a model pupil and the most they see are the social struggles. However they are very very aware that she is very different for us, and can now see that to an extent, but I don't think they appreciate it.

For us, the diagnosis has helped massively, as we know why we experience this and can understand it more and learn about it. Before we were just fobbed off and I was told I was an over anxious mother. I knew that there was something not right, but didn't know what. This has provided a lot of answers and it means we can get the support we need. It also means when things do come through differently, I can explain it, rather than her appearing like a brat who I can't control!

youarekiddingme Sun 19-Jul-15 21:47:38

All DS placements recognised 'something' with DS. Tbh I think no one was that bothered when he was a withdrawn passive child - only when that became violence did they finally admit all the 'quirks' added up to something. I'd suspected he had ASD from 2 years old. During assessment I told school to treat him as a child with ASD and use ASD strategies. They were crap. Then a few months later a new senco joined and immediately saw the autism in DS. She noted how complex he was. I think some teachers chose not to see it still. (Although he's not subtly autistic iyswim?!)

I had his infant school call me in. Uterus times with concerns. They agreed he had poor social communication but when I asked for support they back tracked saying it wasn't that bad and tried to blame lack of siblings or me being a LP on it. That he just needed to socialise. He'd been going to full time day nurs Ray for 3 years at that point - he was hardly unsocialised!

Have you ever filmed your DS? It may be helpful to show evidence of what you at home. I've set the camera in the lounge to record whole chunks before over a whole weekend to show consistency and rules etc aren't the problem.

Do you have a HV who you get on well with who would discuss concerns with you? Also have you tried to say clearly you need support that's why your there - and ask what support they are going to give you? You may have to go down the route of par noting courses first but at least you'd have ticked that box and can fight for the next step.

NiceCupOfTeaAndASitDown Mon 20-Jul-15 22:28:58

Thanks bitbap for your post. that's exactly why I would like a diagnosis if there's something to diagnose. I hope to be writing a similar post in a few years grin

areyou great autocorrect (numerous/uterus) wink
yes I think blame is placed on all sorts of things; for us it's he's a boy, it's his age, and the implied he's your first so you're being precious etc.
yes I have filmed him. I asked the specialist HV to view some videos as she concluded he was 'fine' when meeting him (never mind the fact he was melting down within minutes of her leaving) - she looked at one when she visited and downplayed everything about it asking me if I'd tried telling him his behaviour was unacceptable (shock doh hadn't thought of that) - I never heard back about the others; I can only assume she didn't bother to watch them. I am clueless as to what to do with them to be honest; I don't want them falling into the wrong hands or them being used as a chance to criticise our parenting or DS's character sad

I have spoken to several HVs over the years, the only one I trust is on maternity leave but even she I think would brush me off, albeit gently. We have been on a parenting course, it was all about understanding your child and empathising with them...no actual tactics but whatever seems to work for other parents is either against our ideals (naughty step/time out/reward charts) or simply doesn't work (giving choices/counting to 3 etc)

I've vowed to myself I won't be a pain at school but realistically if I don't fight my DS's corner who will??

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