Aspergers/ASD support thread

sarah1975uk

Hi everyone.
Appologies it has been quite some time since i last posted here.
Am feeling so stressed out and frustrated. As most of you will remember my 11 old son was diagnosed with Autism & Dyslexia last year after so many years of escilating problems, exclusions from school and no help from the services that should be helping us. I am now single again me and my husband seperated last april 08 due to the stress of everything etc etc and are now going thru a divorce, i have lost our family home because of the pressure of having to take so much time off work due to my sons problems and had to resign. I finally got him back into school after statement was granted and brought my current home on my own for me and the children. I had to take a part time job low money and struggling financially. Social services havent been much help if none. I currently have a complaint in with the county council which is ongoing due to the admitted faliours of social services. Son started the new school september 08 and generally settled quite well initially, LEA wouldnt fund a residental school even tho was best in my opinion for my son, but said one last option was a school where i live that is mainstream with dsp with specialist autism status and expereince. Son has been excluded even in the new school, last friday was last straw he had major meltdown over a Pen a teacher gave him that flipped him out he trashed the classroom and bit a teacher and involved police being called to the school even before i got there. School rang me friday afternoon said was being excluded but couldnt tell me how long until today ( monday) due to the heads having to have a meeting to discuss., Head has just been to my house given me letter saying 10 day fixed exclusion but says his statement needs changing because not comprehensive enough for his needs and that it will almosdt definately lead to a permenant exclusion after next weeks meeting with professionals. My son has been out of school for a year until last september cos professionals didnt do the right thing and sort out what they were doing , he is starting seniour school in september and wont be ready and fear now im gonna end up resigning from current part time job to care for him full time cos wont be allowed into any school. And this is going to result in me not earning to pay my mortgage to keep a roof over our heads. To top it off my youngest son now 9 is currently being assesssed, professionals think heading towards aspergers for him, I cant cope and really feel like walking out the door and feel so let down.I dont feel as if i have a life and know all 3 kids are unhappy because of the pressure of daily life, feel so uselsess and a crap mother, when all i have done is try to do my best, understand and love my kids.

Am so sorry for the long post but am so upset and dont know what to do, cos the people i have gone too ie social services, docs and professionals in education dont seem to give a hoot what im going thru just expect me to get on with it all myself..


Sarah xxxx

shazrobo

lottylouj wrote: »

hi ss, the iq test was done in school, i guess its the organisational ability , she can communicate to a certain level but things need to be kept very simple for her to understand them, and only 1 task at a time.
i think she is misunderstood, but by myself also because i dont know what im dealing with, that probably sounds really bad but i wish i could understand her. she is so isolated.
i have a ds who she is very phsycially aggressive to.
im sure she gets frustrated by people and probably with herself, its hard though because there is no warning she just kinda flips.
ive been told today that she is just a naughty child and i need to find other ways of making her behave. this was by a 'professional' who is supposed to be helping us. it makes me so mad cause they dont see what i see and what family life is like.
has anyone elae had this when you have a really strong instinct that something isnt right with your child but no one will listen to you and hear what you are saying?:mad:

sorry to rant, its just been 1 of those days

hi, i have been told by 'proffesionals', that my sons had no medical problems and just naughty children, because one of mine dared to be aggressive in front of the doctor, then refused to speak to him,
i stuck to my guns and sought help elsewhere, by the time they were 11 both had diagnosis and appropriate schooling

shaz x

shazrobo

hi sarah, dont know what to suggest except to say you are not alone, mine started mainstream high school the september following there 11th birthday, they lasted less than a week before being permanently excluded.
at the time it seemed like the end of the world, but in fact turned out to be a blessing, both boys got places at special schools, one is resedential, the other day time only.
try and stay strong it will get easier i promise,

shaz x

blue_monkey_2

Just time for a quick email today. Lottie, please contact your local LEA in regard to statmenting to get you child the help she needs at school. If your child's school is recognising that she she is 3 years behind and they are not giving her help then you need to get this sorted. Have you been to the child development clinic and what have they said? Tbh, it sounds like it is help you need so you can apply for a statement yourself to get this help, it does not need to be done by the school.

Can I ask what it is you needed and what help you had received so far (educational and Medical) as I was a bit confused. Does not take much these days, sorry. If you can let us know I'll see what I can find out to offer you more help.

lottylouj

blue_monkey wrote: »

Just time for a quick email today. Lottie, please contact your local LEA in regard to statmenting to get you child the help she needs at school. If your child's school is recognising that she she is 3 years behind and they are not giving her help then you need to get this sorted. Have you been to the child development clinic and what have they said? Tbh, it sounds like it is help you need so you can apply for a statement yourself to get this help, it does not need to be done by the school.

Can I ask what it is you needed and what help you had received so far (educational and Medical) as I was a bit confused. Does not take much these days, sorry. If you can let us know I'll see what I can find out to offer you more help.

sorry i had a really rough day yesterday and it all got on top of me and came spilling out in no order or sense.

dd has so far been diagnosed with epilepsy, ptsd, moderate learning disability/ severe learning delay and a low bone age.i have also been told she has autistic tendencies.
she is regulary seeing an epilepsy nurse, community paed and another dr for the epilepsy/ delays. we have also started having contact with a clinical phsycologist who is in the process of evaluating her for autism.
i have tried getting her statemented myself because the school didnt agree with trying to get 1. i recieved a letter last week telling me they are not going to proceed as alough she has significant problems they are not deemed bad enough. she does get some help in school funded by the school, but this is not enough. i am constantly fighting the school and no one is listening!!

i think i just needed to rant and feel like im not the only 1. i dont have a lot of support and no family i can turn to. my nephew has autism and i think because him and my dd are so similar it has made me more aware of the problems with my dd.

my biggest fear is sending her to secondary school, she just will not cope with it, i feel physically sick when i think about it.

im feeling really in the dark with it all at the moment, i dont truly understand all about autism and what it means, and how having a learning disability or delay can change or do a lot.

she gets so mad and frustrated with herself also and is very volitile and flips without warning. she hits herself, rocks back and forward humming and picks the sking on the fingers till it bleeds.

i want to understand her and be able to help but i dont feel i can at the moment, i cant get close to her it would be good to know whats going on with her so i can help her.

and breathe!!

Sarahsaver

give young minds helpline a call
they will refer you to a free hour of professional counselling to help YOU because us parents need help too (hugs)

covlass

lottylouj wrote: »

sorry i had a really rough day yesterday and it all got on top of me and came spilling out in no order or sense.

dd has so far been diagnosed with epilepsy, ptsd, moderate learning disability/ severe learning delay and a low bone age.i have also been told she has autistic tendencies.
she is regulary seeing an epilepsy nurse, community paed and another dr for the epilepsy/ delays. we have also started having contact with a clinical phsycologist who is in the process of evaluating her for autism.
i have tried getting her statemented myself because the school didnt agree with trying to get 1. i recieved a letter last week telling me they are not going to proceed as alough she has significant problems they are not deemed bad enough. she does get some help in school funded by the school, but this is not enough. i am constantly fighting the school and no one is listening!!

i think i just needed to rant and feel like im not the only 1. i dont have a lot of support and no family i can turn to. my nephew has autism and i think because him and my dd are so similar it has made me more aware of the problems with my dd.

my biggest fear is sending her to secondary school, she just will not cope with it, i feel physically sick when i think about it.

im feeling really in the dark with it all at the moment, i dont truly understand all about autism and what it means, and how having a learning disability or delay can change or do a lot.

she gets so mad and frustrated with herself also and is very volitile and flips without warning. she hits herself, rocks back and forward humming and picks the sking on the fingers till it bleeds.

i want to understand her and be able to help but i dont feel i can at the moment, i cant get close to her it would be good to know whats going on with her so i can help her.

and breathe!!

Hi I remeber when my DD got her DS for Autism I didnt really know that much about it I found the national autistic society has a great wealth of information available.
Dont know if I am breaking the board rules 9sorry if I am)
www.asdfriendly.org this is a great site well worth joining they are all a lovely bunch

Savvy_Sue

Those struggling with the school because you feel you are not being listened to and your children are not getting the help they NEED - try IPSEA - can't hyperlink that for some reason, but https://www.ipsea.org.uk should do it.

lottylouj

i dont know whats going on in my life anymore.
ive had an interesting conversation with a clinical physcologist today, who apparnently is on my dd case. she is convinced dd is on the ASD spectrum, and there is an multi agency meeting next wed to decide for certain and where on the spectrum my dd is.
it seems people are doing something in the backround, why cant they let me know and save me a load of stress and heart ache.

thank you to everyone who has been helping, and given links i really do appreciate it :-)

covlass

lottylouj wrote: »

i dont know whats going on in my life anymore.
ive had an interesting conversation with a clinical physcologist today, who apparnently is on my dd case. she is convinced dd is on the ASD spectrum, and there is an multi agency meeting next wed to decide for certain and where on the spectrum my dd is.
it seems people are doing something in the backround, why cant they let me know and save me a load of stress and heart ache.

thank you to everyone who has been helping, and given links i really do appreciate it :-)

Have you tried contact a family? They should be able to advise you.
http://www.cafamily.org.uk/index.html
Getting a DS for ASD can take a while as once a child has a Ds for ASD it stays with them for life. Try not to get to stressed I know how hard it can be, I would take a look at the above link, they are really helpfull.
x