Aspergers/ASD support thread

lottylouj

hi all, the meeting went well today apparently, everyone at the meeting agreed she has autistic trates and that she is on the spectrum. got to see a phsycratrist(sp??) so he can meet her and make the final diagnoses.
i feel so relived that im not a paranoid mum and that this has now been recognised.
my head is feeling really fuzzed right now, think its going to hit me later.

softwaremad

3onitsway wrote: »

Hi everyone! I'm a lurker on this thread, I like to see that its not just me with problems!, but I don't often have much to add.

Right now, i've got DS and DD off school on the easter holidays. The first holidays where i've been on my own with three children :eek: - but its not too bad. DS is spending most of the time posting his bits under the dishwasher - his favorite hobby at the minute.

When they go back to school, on 20th, my DS (11) is going on his first school residential trip. Only about 50 miles away, but its Monday to Friday, and he's never been away from me, apart from the occasional night at my mums!!! And i'm absolutely dreading it!!!!!

He has no speech, but good understanding! I keep telling him he's going on holiday, and talking to him about it - but it's impossible to know what he understands, and he can't tell me if he doesn't want to go.

I just keep thinking how awful it must feel, to go on his usual bus to school with his bags, and not be brought home til Friday. I do want him to go, and i think/hope it will be good for him - but I can see me spending the week worrying and crying!

Anyone been through similar - how do you cope?

Dont you just crack up - they are soooo funny! i love it!

my dd recently started boarding school - mon - friday
the first few weeks i stayed in bed depressed missing her (she had been home full time for the last 2 1/2 years) but now i have a life for me - i did my crying; i still hate the school (it's such a rat hole) but its alll the LEa will pay for bunch of worthless muppets they are! god i wished they would read this so they could see how crap they are - although as ihave a touch of the aspergers myself i will have no problem telling them what i think at the annual review!

i ring my dd once a week to see how she is and it still makes me feel pants! but its what is best for her - so each sunday night you will see me running round like a loonatic ensuring all her suitcase is packed and she has her money to get her through the week. She is in a house with 2 other girls who are non verbal my dd talks a lot it doesnt always make sense but hey you know!

with 4 nights in school i have a chance to wash her bedding clean her room and fix everything she breaks during the couple of days shes at home!

although the time ahead is plentiful i am in the process of signing up for a masters course as i need to get back to work and get the old grey matter working again!

god life is bliss - autism rules

gl

softwaremad

lottylouj wrote: »

hi all, the meeting went well today apparently, everyone at the meeting agreed she has autistic trates and that she is on the spectrum. got to see a phsycratrist(sp??) so he can meet her and make the final diagnoses.
i feel so relived that im not a paranoid mum and that this has now been recognised.
my head is feeling really fuzzed right now, think its going to hit me later.

Glad all went well - don't get worried the psych thing is how to say this old fashioned in its terminology but dont get freaked out! how bizarre that a consultant pead cant diagnose formaly? oh well diff areas diff strokes!

at least now with a diagnosis you will be able to access extra support (fiancial and physical) how old is you dd?

lottylouj

im worried about the phsyc thing, he was at the meeting today and fully agreed but and i know its silly but im worried he will take it away after a long fight to get this far.
my dd is 9, she has other problems, so this is another 1 to add to them.
also going to push for a statement now, they all agreed she needs it so they are all going to support it.
wow my head is pounding lol

softwaremad

lottylouj wrote: »

im worried about the phsyc thing, he was at the meeting today and fully agreed but and i know its silly but im worried he will take it away after a long fight to get this far.
my dd is 9, she has other problems, so this is another 1 to add to them.
also going to push for a statement now, they all agreed she needs it so they are all going to support it.
wow my head is pounding lol

Shrinks hey who needs em certainly not us nutters!
He can't take away a diagnosis as others have agreed! that would be incompetence on his part! take a breath lol - i know that muggy head feeling only too well - its a hard time dealing with all these different groups that end up being involved!

3onitsway

softwaremad wrote: »

with 4 nights in school i have a chance to wash her bedding clean her room and fix everything she breaks during the couple of days shes at home!

gl

I already have a list of things to fix while he's away - i'm hoping he won't notice when he comes back and re-break them!! There are a few things he prefers when they're broken!

Mandles

lottylouj wrote: »

im worried about the phsyc thing, he was at the meeting today and fully agreed but and i know its silly but im worried he will take it away after a long fight to get this far.
my dd is 9, she has other problems, so this is another 1 to add to them.
also going to push for a statement now, they all agreed she needs it so they are all going to support it.
wow my head is pounding lol

I am glad that they have recognised it. I know everyone said my ds would get a statement who saw him but you never believe it until you get it. At least you will get the support she needs and even if one person does not see the extent of the childs problem(in my case it was the most important person (dr who gives them the diagnosis) thankfully the statement rests on a lot of reports from people who have seen him/her for longer than 20 mins!
It is funny, i knew he was on the autistic spectrum but still cried after they diagnosed him.

softwaremad

Mandles wrote: »

I am glad that they have recognised it. I know everyone said my ds would get a statement who saw him but you never believe it until you get it. At least you will get the support she needs and even if one person does not see the extent of the childs problem(in my case it was the most important person (dr who gives them the diagnosis) thankfully the statement rests on a lot of reports from people who have seen him/her for longer than 20 mins!
It is funny, i knew he was on the autistic spectrum but still cried after they diagnosed him.

I think the reason we cry when diagnosis is confirmed is because of all of the stress put upon us as parents. It's like suddenly my god i'm not mad they believe me and why is it such a battle to get there! i remember my shoulders slumping like thats it its over a battle won!

all these people really do have a hell of a lot to learn about how to deal with us parents of kids with special needs & disabilities!

Life isnt a constant battle for people with "Normal" kids so why is it for us a constant battle where i splurge from one burn out to another - Nervous breakdowns every 3 years because i fight for what i think is right! Mind you when i have a nervous breakdown they know it as i start writing letters and telling all of them what i think about them and their idiosyncracies!

So even though i'm a headcase i wouldnt change me or my DS but she is now 13 yrs old and its taken me a long time to get here!

when you get a diagnosis you have to grieve for the dreams that you had for your child! as they are not always a plausible option in all cases - however how can you grieve when your child is there right in front of you - its impossible thats why many of us live day by day week by week.

Its too hard to look to the future to far in advance it might scare us and stop us from functioning!

My personal oppinion is that the whole system needs to be binned and for someone with common sense to come in and start again - but on a pesimistic day is there anyone out there with any common sense> (in government i mean) ???

lottylouj

i dont really know how i feel today, spose the best way to describe it is as numb but tearful at times. this really is a roller coaster.
spoke to the clinical phsycologist again and she has now told me that alough everyone agrees dd has autistic trates and is on the spectrum when we see the phyricatrist he might change all of that or not give anything at all. just when i thought i was there and can start moving on they change the rules. its like being in limbo again.
ive also been told not to mention anything to the school when term starts, so what do i do? carry on letting the school treat her as normal.
ok so i guess im feeling mad as hell right now!! :mad:
when is it ever going to get any easier? i cant keep batteling people all the time.

thank you everyone for all your support and words, it does help.:)

Mandles

lottylouj wrote: »

i dont really know how i feel today, spose the best way to describe it is as numb but tearful at times. this really is a roller coaster.
spoke to the clinical phsycologist again and she has now told me that alough everyone agrees dd has autistic trates and is on the spectrum when we see the phyricatrist he might change all of that or not give anything at all. just when i thought i was there and can start moving on they change the rules. its like being in limbo again.
ive also been told not to mention anything to the school when term starts, so what do i do? carry on letting the school treat her as normal.
ok so i guess im feeling mad as hell right now!! :mad:
when is it ever going to get any easier? i cant keep batteling people all the time.

thank you everyone for all your support and words, it does help.:)

I don't know why they have said to say nothing to the school. I would feel that it would be best to keep the school informed. Mine was said to have autistic traits originally and has been diagnosed with high functioning autism(aspergers). I have kept his playgroup and school he is going to informed the whole time. I may be wrong but i would think that it can only help.