diagnosis problems

[joshanddanfans]

sorry its a bit of a long . Wondered wether anyone has any advice cos i really dont know what to do.

i have 3 children boy 7, boy 5 1/2 and girl 2 1/2, eldest 7 has been diagnosed asd (aspergers), adhd, sensory integration dysfunction and bad dyspraxia. my second son i was concerned about from 18 months due to lack of play, no interest in drawing, and hypersensitive to all around. of course the health visitor said i was nurotic and he was a normal little boy. however 2 days into school nursery and i was called in. they had real probs with him, lining up,would not join in anything, hypo and inability to sit still, unable to dress himself etc. both my boys were ok until 3, ok except for hyperactivity etc.no significant autism symptoms, however both boys almost overnight at 3 lost all eye contact, and autism stood out, obsessions, lack of understanding of the world, interaction was odd, odd reactions to noise, crowds etc. they battled on with him in school. 5 year old was in clinic waiting room at 7 year olds appointment and paed saw his behaviour in clinic and said refer him to me. then he began the long process, eldest took 4 years. d s behaviour in clinic was noted, lined up chairs,played with shutters instead of toys which he threw, no eye contact at all, no response to questions,she said he had clear adhd. second paed clinic appoint saw another of tem, she said he had lots of asd traits and his behaviour in clinic was very odd. he was seen by speech n lang,they said he was fine, his brothers lang assess all said fine cos he has advanced aspergers speech. my boys can tell you scientifically how steam is generated but cant tell me if they are sick or thirsty. its mechanics of lang they dont understand and communication probs. d saw ot, surprising to us she said he was fine, this is a child nearly 6 who cant dress himself,faals over constantly, bumps into things and has too many sensory probs to mention. the paed went into school. as ever she went in when kids were doing sports day, he wanted to join in which he doesnt normally,she said he dressed himself, seems odd when teachers said he cant too. so she saw him on a good day and has come to the conclusion d is fine,no problems. dan is very complex,he has many adhd behaviours like cant sit still even to eat a meal, hyperactivity, cant stay on task,poor attention ect, also asd traits, he constantly lines objects up, many obbsessions like blue, only wear blue,eat off blue cup, symmetry is another everything around him has to be symmetrical, dr who and spongebob are others. ,all his play is odd he has 2 close friends but rarely talks to them plays alongside them, he is now hand flapping big time, spinning objects on string around neck, constanly got bottles,dummies,twiddles stickers. had a 4 months period in school at end of term when he lost all bowel and bladder control due to being too anxious of the pipes in the toilet, he has little understanding of the world around him which causes most of his extremely challenging behaviour.he was once a loving boy always cuddling, now if you hug him he head buts you or punches you. his behaviour was getting odder by the day so i videoed him over the whole 6 weeks as proffessionals had said he was fine and i knew it was ######.

 

we had been to cahms for a year after j was diagnosed for therapy, ended up about d and she was convinced dan had emotional probs, caused by home as they manifested more in home than anywhere else.we referred ourselves twice to social serveces and their conclusion was we were great parents and cahms wee wrong. i was really getting miffed now so wrote stupidly rather a nasty letter to cahms saying how the proffessionals were inconsistant not d as they couldnt agree. school report backed all our concerns up, reading his report aspergers smacks you in the face. letter was read by sally 20 pags on wot i thought of the proffessionals. she read in and decided we needed a multiagency meeting which we had yesterday and she gave the first of the 5 videos to each to look at, not the last one with 6 weeks of really disturbing behaviour.

 

we arrived and were alone of course all the proffessionals were in room drinking coffee we were left in waiting room. we were so hopeful with the video evidence and school report we were in for a shock. they went around each saying wot they thought of the video. ot said co ord was fine and wot sensory problems was there(the vid shows dan in constant stim of some kind,struggling to get dressed,unable to work a knife and fork.) cahms were next, at one point of the video d was standing on the telly with a brush bashing the wind chimes off the roof, cahms said he was just having fun, to me it id destructive unnormal behaviour and would she of liked her house destroyed like that and think its normal, they went around all of them, each saying only the positives they had seen not, the challenging clearly asd behaviour the vid showed then they got to paed, she said she was confused and looked as us as if we were making it up, she had all school reports in front of her and had ignored them, said she had no evidence of asd. and proff thought he was fine.

 

i walked out at this point, said i wasnt making it up and left hubby in there on his own. they made me feel like i was making it up. i couldnt believe they ignored the lining up, the hand stimming,the inapp play, the violent outbursts. d has been in school 6 days, they say already they cant cope and have had to hire own support for him, he is sitting in corner spinning objects and squealing all day. the whole thing makes no senses to us at all. i only know for sure what we see every day and that is asd,adhd,defiant oppossional behaviours. all of which my diagnosed child does, like cant cope with change in routine etc.

 

my little girl has very little speech she is starting nursery in january she cant let us know her needs verbally, spends all day lining objects up and screaming because she doesnt understand whats going on around her like daddy going to work, she screams for 50 plus mins, thinks she will never see him again. she twiddles labels, has got out of car seat since 7 months and hates books and tv. to me these are odd and a concern but like d we will be told she is fine.

 

dont know what to do, ask for second opinion, move his school to local asd orientated school which was suggested by paed or give up now and let him fail and get expelled for his behaviour. any ideas!!!!!!!!!!!!!!

[bramblebrae]

Hi wow thats sounds like a terrible meeting you had to go through. I'm really stunned at their off handeness of your very rightly concerns. Can you ask the school to apply for a full assessment and statement, I would think they would be looking for a statement to get funding to provide the support your son is currently getting and clearly they feel he needs. It's amazing it's the school who is in support for a change and not the professionals who are supposed to know what their doing. My sons nursery teacher was the one who pushed for his diagnosis and though at the time I never really appreciated it if it hadn't been for her we would have never got the diagnosis so quickly as the assessment panel just didn't know what to think as the conditions he was assessed under, 3 kids to 4 adults was a very calming atmosphere he thrived in and didn't display as many ASD behaviours as he did at nursery - so they were pushed into observing him in different situations upon which he got his diagnosis and eventually the help he needs.

 

I do wonder if the team you got actually watched the whole video, they would maybe been discussing things amongst themselves and not paying attention to what was happening on screen -sorry just me trying to find an excuse for their blindness! As for them not even reading the schools report I would say that was negligent.

 

Good luck keep pushing them you know what your witnessing don't let them bully you out of getting your son the help he needs. Doctors etc aren't infalliable by a long shot.

 

 

Take Care

Lorraine

[mum22boys]

Hi,

 

I really felt for you when i read your post. <'>

 

I know how hard it is when you can see what is wrong yet others seem to turn a blind eye. I personally have no time for CAMHS, they failed us. M was assessed by them and although she could see he had AS traits she thought he was ok because he made eye contact! M is now on a very long waiting list for the CDAC. I understand where you are coming from with these so called proffessionals studying our children. I would like to know sometimes just what they are looking at. We have had strange responses from the AA teacher and outreach. Their reports shout Autism yet they end the report saying things like 'could have been a bad day'.

 

Look, I would go with your instinct on whether you believe your children may have AS. just this week I made the decision to go to the Health visitor about my youngest, I was lucky that my concerns were taken seriously, something that they didn't do 4 years ago with M!

 

I am suprised about the SALT report that says your child is fine. My son has what appears to be excellent speech but his understanding of language is very poor. i never realised how poor until he had a report which put him over 2 years behind on understanding. Surely your SALT must have tested for things other than just speech.

 

I would not give up. I would ask for a second opinion.

 

What does your childs teacher say about his behaviour? Is it ok at school?

 

Good Luck,

 

mum22boys

[pingu]

<'> <'> You are going through the mill at the moment, but dont give up. Eventually if you bang on enough doors then someone will listen. I just don't get it with the so called professionals, they dont seem able to listen to the "true experts" which of course is the childs own parents. It does sound like the school are on your side, by giving him the support they are admitting a problem. The meeting sounded like a nightmare and i can sympathise having been through a similar thing last week myself. Only we have the diagnosis and the support of his psychologist just NOT the school. he is apparently fine whilst there (yeah right).

 

You sound like you are loving and caring parents and are only doing what is best for your kids. What these people are thinking of when they say they cant see a problem, i just dont know, because from everything you have listed above it sounds like you are describing my kids. Please hang in there.

 

Try to follow the advice already given especially the statementing advice, also are you getting any DLA for your children?? It might help pay for new things when the kids have a rampage and break things.

 

Keep going with your fight, i would also consider going to citizens advice or even a solicitor going private would be ok if you had the money, once you get someone to listen (and watch) im sure you will find other people will start to sit up and listen.

 

I do hope it all goes well, keep fighting and we will always be here for you when things are going badly.

 

Take care

shaz

[joshanddanfans]

thanks all, d is sitting in class squealing in corner and swinging a string of beads, if teacher can get his attention he will write a sentance but only with one to one support. thats the hard thing, the teacher says h has good days so proffs think it isnt pervasive. teacher feels he has autism but masked to others like something else, like he shows oppositional defiance of adhd and that behaviour masks the root concerns of autism. it confuses me cos at home he cant switch off his autism traits, he just hides them well in certain situations and has good coping strategies especially in clinics, also in clinics on one to one he is not the same child.

[Karen A]

So sorry you are having such a tough time.Please don't give up pushing for an assessment.If the paed thinks an ASD specialist school is a possible option see if they will support you to apply for a statutary assessment.At least then you may force proffesionals to look more closely at what is going on.

The fact that your child can cope on occasions does not show that he does not have ASD.Ben has excellent vocabulary and at times even a skilled person would not notice his difficulties.However if he becomes stressed and does not cope he can be a very anxious vulnerable young man who demonstates very challenging behaviour-due to over stimulation and difficulties with social understanding.Incidently to an individual who does not understand ASD very well the behaviour would look just like ODD or ADHD.Ben also copes very well 1:1 with adults especially as he talks about topics he knows about-to an untrained observer he would appear to be an intelligent articulate individual with a very neurotic mother.Karen

[rainbow queen]

just added -dont think your alone

cause ive had 5 years of this and ive took video footage in to camhs too and still no firm dx

school is just as bad

ive just piulled my 2 boys out from the school they were at----boy the headteacher soon showed her true colours -utter ######

 

ive got them starting new one this mon....................it seems a better school..........

 

all i can say is dont give in cause it seems they all want us to cave in and its utter rubbish -half these folk dont even know what they are talking about-----ive never accounted so much bull ###### as i have with dealing with this in my whole life...............