dd having ados on wed , recent assesments all conflicting,

[vondahue]

Hi,

 

it seems to be fairly common that getting answers and a DX takes ages, i know girls are harder to diagnose but i'm hoping this time they will have one result one DX,

 

At age 5 daughter wasnt in school due to toilet issues so was referred by pead to a 5 day stay with me at a center for all these assesments like motor skills and speech language and psych, they felt she was just controlling and axious, this all happened at a time where i was having troubles at home with husband and i felt the psych only listened to this and not that actually when i was with her father (husband was step dad) she was the same and life with him was 2 point 4 children normal quiet stable and i noticed at 18 months she wasnt like other kids and she even attended a special needs play group, she was refered to art therapy, to her this was great 40 minutes with a woman doing colouring,

 

i just battle on myself with her then things went worse and i needed her having help due to my husband being killed, i coped and tried to keep life as normal as i could getting up doing same routine etc but i felt she needed to see a psychologist to help her we was then refereed to a specialist who saw dd and myself and he said straight elective mutism and AS, some months passed and i saw psychologist at which time i was feeling low as no one in the family was helping with her especially her father, and so i sat and waffled away about poor old me, leaveing her to also conclude its home life not listening to the bit where i said 18 months old or when life was good she was the same, then speech language, my dd is bright and these tests of point to a picture is like school work she thrives with learning n school soaks everything up so they wasnt so sure because she was clever but i told them take her out of that setting see her not in an appiontment or a setting she'd feel comfy in like this woman is a teacher, then autisc specialist came i had sent dd to school and explained dd would of just had tummy ache and dissappeared up stairs so i chatted a bit and done the scale test which she was over the minimum and then she visited her at school, now school always say she's fine, autistic woman confirmed dd actually struggled and if she was told to make up something using her own imagination she couldnt and if she wasnt told exactly what to do she struggled plus few other bits , so i had 2 yes 2 no, and i wasnt happy i was told they could drop assesments and just go for mental health treatment or did i want to push for more assesments so i told them wanted it done again, all those test took months, amazing with in a few months they sorted it out, dd had school ep last week , we saw the language speech therepy today well she went with her younger brother to play while i sat with the psychologist, this one i like she seems to listen, i have ados on wed it was supposed to be set into 2 appointments or i have ados and another crammed in on wed , and then next week i need to finish off with the psych for an hour then the next day a meeting to find out there opinion.

its a long winded thing and just hope we can get somewhere this time.

[Karen A]

Hi vondahue .

I hope things become clearer soon.

CAMHS took three years debating about my son Ben before he obtained a diagnosis.I also had a very complicated history so I do understand some of what you are feeling.

 

Karen.

Edited November 8, 2010 by Karen A

[vondahue]

Hi vondahue .

I hope things become clearer soon.

CAMHS took three years debating about my son Ben before he obtained a diagnosis.I also had a very complicated history so I do understand some of what you are feeling.

 

Karen.

 

i hear alot of people saying how long it takes its strange because as parents we see it so clear, i have friend her dd is 12 now my dd is quiet hers is more noticable in her behaviour and yet they are getting the blame as bad parenting and endulging her, this poor girl is sound sensitive along with lost of other very obvious traits and she's do things like sleep in the bath tub while on holiday i think her mum has just about given up hope of getting help she has seen numours people and wasnt happy, i feel that although As is difficult to diagnose in some cases that they really do need to listen to the parents, i know some maybe with bad parenting would like to label the child to remove blame but they treat everyone like we just want to do this and blame pur mistakes or parenting or childs behaviour on a condition instead of believing we know our children its just difficult to remember every thing they do so explain why we feel they have AS, it was just the other night my son's toys had been emptied out his tub as he decided to sit in it after returning from the kitchen amongst the mess of trucks was a perfect line colour order or matching trucks, my son use to buy same trucks so has a collection and it looked odd amongst the mess this perfect line in order, he'd not done this she had got up lined them up and sat back down, this time i have a picture on my phone for them to see , lets hope that will help show them its not 'home life' or parenting or what ever else they ca blame it on this time

[puffin]

Hi

 

I really understand your frustration and situation - I think it is always difficult when there is a complicated history around the diagnosis as there are also so many differential diganoses and considerations of more than one diagnosis that must be considered before they reach a decision

 

Also the fact that girls present slightly differently is also a factor

 

My DD began showing clear symptoms at 2-3 yet we did not get a formal diagnosis until the age of 8

- there was the fact that my brother and 2 grandparents all died suddently within 18 months so the team wanted to look at grief and stress disorders

- she also had a serious accident aged 4 which reduced her ability to write

so all these things led to delays

 

But hope that you soon get the answers you need

[vondahue]

i just sat and went through all the first reports done at age 5 and nothing was picked up they all said she carried out the tests and was average and able yet presented herself as shy and anxious, what they arent hearing is with people like teachers or someone doing work with her is better because she is so bright she'll read a book a night i couldnt keep up with her and now she is reading fact books about alsorts and had to buy her science ones too, she thrives by learning, at young age i taught her numbers colours alphabet al very early, now if you take that away and try to comunicate with her normally it wont happen , it took til age 6 for her to acknowledge her owe grandad before which she would ignor him and glare, i worked out that like so many other people , he wasnt to good at communicating on a baby level or was working and popping in and expected dd to just respond like we all do but with her you have to spend along time putting lots of effert in and only then is she able to open up, however you can walk away come back after 5 minutes and have to start again with her, we had parent teacher meeting after school, she has only been at new school a few weeks and i alread knew she was ok happy to go into class enjoying working it was play times that were hard, her teacher said she is doing well knowing we're going through ados etc yet dd sat there didnt speak looked to me all the time and partly glared its a funny look bit like a glare/looking through them/i hate you face. once outside she continued to chat to me as normal. these are common things she does now, also she has learnt alot from her younger brother she is bright enough to work things out they say some learn coping methods to get through life they dont maybe feel the emotion because they cant but may learn that at certain time you need to respond by saying something and i think she learns from her brother, tomor her brother is off shopping with a friend, he's 2 and half and i've told him to look after friend who is 44 lol they going to buy sweets lol which i need as i want them seeing her for the way she is. also since summer i had gotten fed up with trying , trying to take her on days out having friends round, or even to ever think i could/would ever have another relationship in the future, we did nothing went no where just school home garden and town, people came while she wasnt about, things improved the moods and outbursts were less, it was like life ws simple and thats what she needed once she expressed she didnt like someone around gave no valid reason but while they was visiting she excelled with behaviour even while it was just us at home, then this person comes round and i'm a spare part they went and played all day with kids giving undivided atention great she was ok but what about next time? she expected it didnt get much attention, i asked i thought you did like them she said well if they play with me i do i asked and if they dont, her answer was simple then i dont, this is when she blanks and you cant get any sense out of her but this is big scale when people are around even on the days nothing is happening no one around life is fine its still all there, well i guess see how tomor goes then a week wait to see what they have decided fingers crossed they dont make me out to be wrong and to blame or what ever else and they truely listen to what i'm telling them x

[Kathryn]

All the best for the assessment tomorrow,hope it goes OK.

 

K x

[vondahue]

All the best for the assessment tomorrow,hope it goes OK.

 

K x

 

big thanks.

well it took just on a hour today, we sat in the room, one lady taking notes and the other doing the testing whie i just sat back,

the things i noticed was my dd would only say yes no or dont know this was to questions like whats you favorite ice cream flavour have you had chocolate flavour, etc she sat there wouldnt even take her coat off and it was roasting, she was asked to set up some dolls and accessories and play she set it up and sat there, so the lady asked a few questions like what do you think they are doing , reply was watching tv, then asked what do you think they like to watch and dd said nothing shrugging her shoulders , another part the lady got a small toy dog gave dd the little doll said dog wants to play football dd dont nothing, same as when made a dough cake for a doll and was asked to sing happy birthday and blow the candles out, when it came to the books and explaining what she could see her response was better but not very detailed, they even did one where they asked her if she would like a cheddar biscuit not sure why but she said no, then she was asked to look what did she see ! there was a bunny and a truck she was asked which she would like to play with and she said bunny the woman showed her the button that made it walk and daughter copied the woman when the woman passed it to her and stroked it saying aww dd sat back down did nothing, then bubbles were blown i noted the woman wrote something as dd was sat stiff but a ballon came her way and she reached out to pop it, it was very hard to work out what they got from the tests and as i couldnt see dd face hard to tell if they noted that, i know dd was not as respondant as prehaps most children but i guess now its the waiting game til next thurs, she did do balance and reflexes noting she had low muscle tone we had a quick chat and i showed her a photo i took just a few days ago or the lined up trucks hoping it'll help, so fingers crossed, got to finish off with the psych on wed for an hour and then thursday, i guess one thing as i had assessments done and i wasnt happy this is why we doing this now what happens if they say its not AS but just anxiety is this the end of the rd i know they could offer mental health support if thats what they say but i'm so sure its AS i know she has axiety at times but to know her father as we thought he had social phobia or something, after 6 yrs he'd not even be able to anitiate conversation with me like walk in door from work and say hi hows you? i always had to prompt him or he would stay silent, her gran on that side ocd her auntie find social things had even crossed the rd to avoid an old school friend as she didnt know how to talk to them, may be shyness nerves but dd takes after that side of her family doesnt show any common triats from my side,

well i will post to let you know how it goes x

[vondahue]

had the ep report yesterday which really said lots of positive things about dd, that she did warm to the ep etc, there was notes that she had moments where she looked distant and blank which the teacher had noted too, so she had noted something, the ep called today to ask if she could see dd again before our meeting on thursday next wk, as her teacher had talked to her as he had noted dd behaviour during the parent teacher meeting, now this is what i have told them all , with in school she is better she knows whats expected and understands teachers are there for her etc, but you take her out of that security and she shows clearly that she has difficulties, so this parent teacher thing was at the right time, as dd sat stared blankly at teacher didnt communicate and i noticed this and luckily the teacher saw it and so now maybe they really are understanding dd is very complexed as the ep said , so i feel alot better about this time round that they are not looking for the obvious to be in there face and look a bit deeper than she's just shy , i do keep explaining situations and giving examples of things , so now for the wait til next thurs. will update you x

[Karen A]

had the ep report yesterday which really said lots of positive things about dd, that she did warm to the ep etc, there was notes that she had moments where she looked distant and blank which the teacher had noted too, so she had noted something, the ep called today to ask if she could see dd again before our meeting on thursday next wk, as her teacher had talked to her as he had noted dd behaviour during the parent teacher meeting, now this is what i have told them all , with in school she is better she knows whats expected and understands teachers are there for her etc, but you take her out of that security and she shows clearly that she has difficulties, so this parent teacher thing was at the right time, as dd sat stared blankly at teacher didnt communicate and i noticed this and luckily the teacher saw it and so now maybe they really are understanding dd is very complexed as the ep said , so i feel alot better about this time round that they are not looking for the obvious to be in there face and look a bit deeper than she's just shy , i do keep explaining situations and giving examples of things , so now for the wait til next thurs. will update you x

 

Hi.I think it is helpful that an EP and school are involved in assessments.CAMHS can sometimes see trauma or grief as the cause of any difficulties whereas perhaps an EP might have a more rounded view.

I hope next Thursday is ok too.

 

Karen.

[vondahue]

Hi.I think it is helpful that an EP and school are involved in assessments.CAMHS can sometimes see trauma or grief as the cause of any difficulties whereas perhaps an EP might have a more rounded view.

I hope next Thursday is ok too.

 

Karen.

 

thanks, yes i have noticed that, and the psychologist i saw first just focused on my husbands death or how we had moved a few time, however this one i saw the other day although understands there were things that happened that made things worse she is also aware i noticed a difference with dd at 18 months and struggled the entire time with her behaviour due to not understanding , its very difficult to get them to listen fully but i think what ever there out come i feel they have tried to look beyond the obvious x