ds being assessed and I'm feeling out of the loop

[sasquatch]

we have had 2 sessions at camhs and are going back on monday.
Ds has spent time with a family therapist while I talk to two clinical psych.
My problem is I feel as if its all going on around me and that I'm not getting my point across to the psych.
Also we have spent two sessions answering the same questions on the questionairres i have filled in which he hasnt looked at.
Feeling very frustrated and lonely.

Oh it's so hard sasquatch isn't it?

Can you say this to the psych do you think? that you are feeling left out of the loop?. I have a person who is kind of point of contact who kind of keeps me informed about what is going on ( lol!..i don't know if that helps btw...i still ended up sobbing this morning after coming off the phone!)
I was just coming to post myself actually about feeling a bit lost.
Tell me about your boy...we can be assessment buddies i've only just started down this route myself.
Ds is being assessed for asd (most likely aspergers plus dyspraxia). He's 10..and he's lovely

thanks,
I dont have a named person I can talk to between visits but I could phone and ask for one I suppose.
Today I made a list of things I wanted to talk to them about next week and will try and stick to it if they give me the chance.
DS is 12 and also lovely,creative, and funny. he's beeing assessed for adhd, and asd. I dont think he is hyper at all and may be aspergers.
he seems to me to have a lot of overlapping symptoms including dyspaxic ones, in fact when he was younger his lack of co-ordination was the thing that stood out more than his asd symptoms.
How long has your assessment being going on?

He was on the list for a whole year and i finally had his first appointment a few weeks ago (i went alone for the first one).This week he had another...where they saw him and talked to him..asked him questions, got him to do physical things etc.
He's very quiet and never causes a problem at school and unfortunately for him this is why i think his needs has continually got shoved to the bottom of the pile. In the end on their request (they said it would take ages if they did it) i went to the gp and asked for a referral myself.
His case has now been passed on to the data team (his initial assessment showed very clearly that he was on the autistic spectrum) and he will now be assessed formally. They said they will take the years wait we have already done into consideration.
My problem is school.
Apparently..despite claiming to knowing that there was a problem since reception(the school wrote this in the letters they sent to camhs team)...he has no formal IEP. When cahms asked them about Individual pupil funding they said there is non available. When she asked them about arranging for an Ed Psych to see him, they said they are fully booked ( is this how it works? does anyone know?...i am clueless). Are they just taking the p*? do you think?

I have asked for a meeting with the senco and his current teacher(s)...but am not holding my breath tbh...they haven't answered any phonecalls from camhs so far.

I was sad...now i'm mad actually

Proceedures for different areas seem to vary so much don't they? i find it really confusing where we are up to tbh. How long have you been in this process Sasquatch?

I also went through the gp trout, who said he had to see camhs because over 11, but you are going through camhs?
I couldnt afford to pay for an ed.psyc although ds is at independent school so that seemed the way to go. I had been putting it off, and being indecisive for years.
FRom what I've read it seems to be the quicker way to go.
My experience was very fast being seen.
I self referred in march, saw a camhs psychologist at local health centre 3 times in may, and the 3rd time on my own she told me he was being referred to the asd/adhd neuroteam at camhs, but that from what she had seen so far it didnt look like adhd. That was based on the conners rating scale his teacher and i both filled in independently.
However when I went to first of the 4 session with neuro team on 1st october they began testing for adhd again, and asking me the same questions and I feel like I'm going round in circles.
It also seems that these guys havent read the notes the original psyc. took.
Ithink they may be planning to observe him at school.
We are going to have one more session of assessment on monday and then a feed back session the following monday when I may be
finally given some information.

I'm sorry youre finding school so unhelpful, I have had a supportive teacher since last year and that has helped me.But because of their lack of support in the past I think I have become quite detatched from them and from expecting much. As you say you are not holding your breath. But I am doing this all myself at this stage and not really bothering them except asking her to fill in the questionnaires.

I think I need to tell them what is happening for ds rather than they tell me.

I am interested to hear that on your first assessement you were told that your ds was on the autistic spectrum, as on our first assessment I was told the one thing that was then retracted, so I guess I wont feel that anything is solid unless its in writing.

Am I ranting ? sorry i feel like I've got alot to get off the chest.

lol! it helps to write it all down doesn't it

Conners rating scale... errm is that the one where they get a score of 2,1 or 0?
Yes we did that...and so did school.
Yes strange that you were told only over 11's for camhs...perhaps it varies throughout the country.
Have you been to any support groups?...i went on a really good one day thing run by 'Cheshire Autism support and Development Team' last week...which was really good. Lots of info...lots to take in..but such a relief to be in a room where my boys behaviour was 'typical'

I was told by Camhs that they can no longer arrange for an Ed psych ...only the school can (and they won't)

thanks trout,

so how is your ds going to be seen by an Ed.psyc?

I think conners was the 1,2, or 3, or was it the "fairly often, hardly ever, or all the time" one? .
fgs these things are so hard to be vobjective on, -or is it subjective ???? (v.tired now)
Or are they to give a guide? and then ask furhter questions?
I mean doesnt it depend somewhat on your perception of "unecessary climbing" for example, I think I have been pretty relaxed and tolerant of things others may not be.
Perhaps I have been in denial, or thought it didnt matter.
I agree with you though that as ds gets older I see his standing out, and that I need to try and find a way of equipping him with an understanding of his behaviour and tactics to help him manage it instead of just feeling bad about himself.

Good that you found a support group, and you can go without formal dx.

i saw a nice book today called "finding a.s.in the family". It had a very accessible but not simplistic layout and content. A bit like FAQ.

thanks trout,

so how is your ds going to be seen by an Ed.psyc?

I think conners was the 1,2, or 3, or was it the "fairly often, hardly ever, or all the time" one?
fgs these things are so hard to be objective on, -or is it subjective ????
Or are they to give a guide? and then ask furhter questions?
I mean doesnt it depend somewhat on your perception of "unecessary climbing" for example, I think I have been pretty relaxed and tolerant of things others may not be.
Perhaps I have been in denial, or thought it didnt matter.
I agree with you though that as ds gets older I see his standing out, and that I need to try and find a way of equipping him with an understanding of his behaviour and tactics to help him manage it instead of just feeling bad about himself.

Good that you found a support group, and you can go without formal dx.

oops

OH that's right
I think the questions had to be answered 'Not true', 'somewhat true' and 'certainly true' and were scored 2,1,0

Talking of 'finding it in the family' ...can you see any traits elsewhere in the family sasqutch?
I can see traits of Aspergers in my husbands father and to a lesser extent in my husband too.

I don't know how ds will be seen by an Ed psych. I have a meeting with the school hopefully on Monday...i will try to push them to do it then

In the family yes!
I have a brother who lives as a recluse with no furniture, highly intelligent but dropped out of a very good university.
he has had virtually no contact with the rest of family for at least 15 years.
He was always socially awkward and felt different to other kids-He told me this recently.He is lovely but a very complex character.
After asd was mentioned to me I saw so many similarities.
He didnt speak until 2.

I am wondering what will happen after our four sessions are up, what happens?
If they give a dx or not, or can they refer you elsewhere?
They have asked ds to come back for every one so are doing more tests.
It makes me feel so weird, they arent telling me about my ds!
I know its only two more weeks to the feedback session but I am driving myself nuts here!

How did Monday's meeting go Sasquatch?
Did you get any more information from them?
and are you any nearer to knowing a dx?

I have a meeting with the school on Thursday

Just to but in a little,

My DS was diagnosed with AS in the summer.
School spoke to me about concerns and I had similar ones too TBH so they told me I had to go to the GP for a referral. School wrote me a list of their concerns, I added mine to the list. The GP referred him to the childrens phycology unit at the local hospital.

Wherever he sent his letter it was re-referred and we got an appointment after 3 months. We and the school had to fill in lots of questionaires and there was one 2 hour appointment where they talked to us all together breifly then took DS into the room next door to obverve him doing stuff. There was a 2 way mirror thin so we could see him while they continued to take history from us and at the end of it all they said they thought they had seen enough to diagnose AS but had to formally write up and score all their observations.
This took another 2 months.

Having now received the report and demanded help I am now trying to get help for DS in school. Today an outreach teacher from the LEA autistic school came to observe DS and I met him to tell him all my concerns etc.
It is slow hard work getting them to move towards providing the help though and I have been very proactive towards nudging the school ever in the right direction.

I am In West London BTW and this is a very different experience to the one you both seem to be having in that getting the DX was the easy bit. Getting the help is gong to be more tricky I think

Alison, is your boy statemented?..or are you in the midst of applying for a statement?

Troutpot no he isn't statemented. He is on School action plus. this is the level below a statement I think where they get outside help for him but think it isn't severe enough to get a statement.
I don't think DS is too severe as these things go and the school have advised that it is unlikely he would get a statement as a result.
I reserve my judgement to see how things go and then may apply or not anyway depending on how things go after help form the special school

Thanks trout, and alison,
yesterday was an anti-climax, i had a list of all the things I wanted to talk about as this was to be 3rd session and next monday is feedback, but when we got there they wanted ds on his own so that took the wind out of my sails! apparently I have answered all the questionnaires so am no longer of use! hope I dont sound too controlling just worried and want them to have as much to go on as poss.
How old is your ds alison? mines 12, sounds like you got a dx quickly but mind you I dont think we have waited long.

No not controlling at all Sasquatch...just keen to do the best by your boy

Alison...good idea about seeing how it goes and reserving your own judgement. I was also told by school a few years back that ds wouldn't get a statement...have since been told by cahms that there is no reason why he shouldn't.The school senco was actually ds's class teacher in yr 4 and was adamant that ds was just 'immature'...same teacher then sent a report (about ds's behaviour since reception) saying he has always displayed autistic traits.
lol the Cahms team like this - when they got the report!
i feel so sad for my boy and desperately guilty that i let it go on for so long.
..but i just wasn't sure..you know?

My DS is 6 - nearly 7.
I had had suspicions for ages , but then kept on thinking - its just his personality - he's not that bad.

I think all mums are a bit like that really so don't beat yourself up about it.

Can't beleive the teacher though . What an about face.

I hope your meeting goes well with the schooltoday, are you still trying to get an ed.psyc assessment? or help at school for your ds anyway? I really dont know how this works?
Can your ds qualify for help without the statement? do you have to have the ed.psyc assessment to apply for the statement or will the dx you will get from camhs be sufficient?
If your school say he has definite problems, why doesnt he have an IEP?
I hope you are able to get some proper answers.

How did things go troutpot? I hope you got some answers.

I am told that even if your child is not statemented, and does not even have a diagnosis then the schools have funding to help anyway.
Apparently there used to be 3 levels of statementing according to the needs of the child and a few years ago the government took away the lowest level and gave the funding directly to the schools, so they already have a pot on which they can draw. (Now who knows what they have allocated it to but it is there and available for your child if you need to push for help and they tell you about funding issues this may be useful as ammo.)

Hello, Just had DS (11) paed. assessment and as expected they say he's def on the autistic spectrum. TP, I think its not unusual to get them assessed quite late as often they don't cause a lot of problems at primary school but I know what you mean about feeling guilty - especially when you read stuff on the net about early intervention.
Actually I don't expect that much will change for him at school in practical terms, but I think it will make a big difference teachers knowing - especially with the move to seniors.
My DS is also lovely and has a good sense of humour - paediatrician kept saying 'yes but is it slapstick humour he likes?' - no he LOVES puns and wordplay - with our help and support we will find his niche in life rather than trying to get him to be 'normal'.

Your boy sounds lovely Atg . We have just done the rounds of secondary schools and made our choices(bit scary). He was very enthusiastic about them though bless him...although the thought of how he would actually cope fills me with dread.

Meeting today went quite well thanks (although i'll hang total judgement untill i see some results). I think i may have been a little too prepared [cringe]
They agreed to apply for funding and to get an ed psych to see him anyway...so things are definitely looking up.
The iep looked like it had been hastily cobbled together for the meetings sake tbh..and she kept saying that because he had no problems with reading or writing that it wasn't the form they usually use and that she would write it out again and add some stuff from the meeting