Aspergers/ASD support thread

blue_monkey_2

Sarah,

My heart goes out to you reading your messages, I don't know what to say or what advice to give as I am new to all this but as Sue has said I would give IPSEA a call right now and find out where to go from here. Don't be afraid, how much worse can it get? Might the CAB be able to offer advice on whether you would be eligible to carers benefit, I am sure there must be something in cases like this because you are not ABLE to do your job because your child needs CARING for because he has been excluded from school for, what is, undisclosed medical reasons. How have your docotrs been in all of this. I would give them a call and ask the question now rather than wait for DLA to be sorted out (how long have you been waiting to hear), find out if there is anything you can do that would mean at least the money side was lifted from your shoulders.

I am stunned the school could call the police and put a 9 year old child in handcuffs. I am shaking my head in despair, just what on earth has happened to our school where they can find this acceptable - I would tell then I'd be sueing them and that would shake them up and make them think about what on earth they did this for. Heck if you handcuffed him at home I am pretty sure the Social Services would be out with a few words to say about it. Now I am cross as that is despicable. As is the exclusion about the trip - we had this with my son and the school play as he would not dress as a snowflake and sing in front of everyone (he is 3) and they told him he either did as they told him or he would not be able to go to the School Xmas Party. So I kept him off school for the play so he would not be excluded from the party!!

Have you asked around via Social Services to see if there are better schools in the area that can deal with children such as yours. Someone else mentioned about their son being sent to a Special School for a term or two, like a time out I guess, maybe you want to give this some thought, it might be an idea as there would be more qualified people to observe your son and see if you can get a diagnosis this way. Your son is already being excluded for all but 2 hours excluded teaching so what would he be missing out on and they would be better qualified to deal with your son when he has a meltdown. Don;t be scared, you might find it helps. What are your thoughts on this - does anyone else have any thoughts on this, if Sarah's son is not getting anything but 2 hours a day then would she be able to ask for this via SS or the LEA? It might be worth asking around to find out if nothing else.

I am sure this is having a huge toll on you and you sound stressed as it is, can you not get a doctors note for a few weeks/a month off (Stress? Depression?) so you get paid while trying to sort it. It is not a lie as you sound far from chilled out. Maybe a visit to the doctor will help you as well.

I am always on here moaning so please, please do come back and let us know all that is going on and if you need to have a vent then you are welcome to and don't feel bad. I have had this for just a few months and get frustrated, I cannot even begin to imagine how you must be feeling so go and see the doctor, at least you'll be home for your son when he needs you to be and you'll be able to deal with some of that stress rather than being called out every 5 minutes.

I feel bad for moaning about my tiny problems now I have read Sarahs story, please let us know how you are today Sarah. Sue has so much advice to give so please do as she says and call IPSEA. xx

NoahsPennilessMummy

PW.....no it is not always the school who request a statement....parents can do it themselves....it is the LEA who grant and organise a statement and it doesnt stay with a specific school/nursery it moves with your child....however problems can arise if your child moves district as then they are under a different LEA who may have different policies and rules.

sarah1975uk

Snaggles wrote: »

I think if our children ARE going to stay in mainstream education, there needs to be more awareness of ASD across the board in schools, and that includes everyone - headteachers, teachers, dinner ladies, TAs, NTAs...etc. It wouldn't even have to be intensive training, just the basics, so that they understand how difficult our children find changes of plan and routines, especially last-minute ones (and particularly negative last minute ones like you have experienced Sarah), and things like avoiding sarcasm, metaphors and expressions, and giving clear instructions. They couldn't possibly teach everyone how to handle children like ours, because each one is different, but just a basic awareness would go a long way.

Totally agree with you 100000% although i know what im facing at the moment is hard, i just feel sick too thinking about all the children whos parents that dont care or help their kids in the same boat. Also makes me mad that years ago so many kids lost out and have had major problems in adult hood that were un recognised.

blue_monkey_2

Hi again, PW, I was looking on my local council website yesterday and it was all listed on there how to apply for a statement. I did not think it would be but after we spoke about it I thought I would take a look and yes, everything that should be there. It is not your local council you need to look for but the council that deals with the education authority, look under the Education section and then Special Needs. I thought it was very thorough on what you have to do. I also found thing helpful on the Social Services website when I was looking a few weeks ago.

NoahsPennilessMummy

Oh Sarah what an awful situation to be in.

I think you really should go and see the doctor and get signed off work for a while.....at least then you have one less thing to worry about, you can be there for your son without being called out everyday.

I think this school sound like it is downright damaging for your son! How dare they treat anyones child like that! Blimey as a nurse I would be struck off if i dared to restrain a difficult patient let alone handcuff them.

I know someone who has an autistic daughter who wasnt coping with mainstream and she took her out of school totally until an alternative was sorted.......obviously this is a bit more difficult if you are a working parent.

It really is time that schools took ASD more seriously and trained everyone working there on at least the basics.

You have to keep hassling people about getting everything in place....the statement, DLA etc.
It doesnt come naturally to me but in the 2 and a half years since my little one was diagnosed I have learned to be on peoples backs all the time....i used to worry that they would think i was a pain but i no longer care, as long as my boy is sorted.

DS started primary school this week and it took months for them to find a suitable support assistant for him but they were happy for him to start without support and "keep and eye on him"......i told them i was in no way happy with them as he would not cope...and added that the Statement is a legal document and they had to find someone to support him for those hours.....till then he would not be starting.

They eventually found someone but she has no autism experience which i am not happy about....i have made my feelings known and SENCO has told me this morning that she has been booked on four autism courses in the next few months which made me a bit happier.

Have also discussed with SENCO that i am strongly suspecting that ds has dyspraxia with his autism and they are going to look into getting something to go over a keyboard to try to get him to write that way as he cannot hold a pen at all.

From what i have heard things go well at primary level but them it becomes more of a problem!

all i can say is we are all here for each other on here anytime we need a rant or advice.....there is usually someone on here who has been through it and knows the answer!
Please let us know how you get on
claire
x

sarah1975uk

blue_monkey wrote: »

Sarah,

My heart goes out to you reading your messages, I don't know what to say or what advice to give as I am new to all this but as Sue has said I would give IPSEA a call right now and find out where to go from here. Don't be afraid, how much worse can it get? Might the CAB be able to offer advice on whether you would be eligible to carers benefit, I am sure there must be something in cases like this because you are not ABLE to do your job because your child needs CARING for because he has been excluded from school for, what is, undisclosed medical reasons. How have your docotrs been in all of this. I would give them a call and ask the question now rather than wait for DLA to be sorted out (how long have you been waiting to hear), find out if there is anything you can do that would mean at least the money side was lifted from your shoulders.Doctor initially signed me off for 2 weeks and then renewed sick note for 2 months that runs out by end of January 08, son still not back anywhere near full time hours so now gonna have to get it extended again no doubt. At least i know ill get paid to be off, but this is obviously not ideal situation but im having to do whats right for my family.

I am stunned the school could call the police and put a 9 year old child in handcuffs. I am shaking my head in despair,what i saw in the classroom that day will stay with me till the day i die, it makes me cry to just to think about it, god knows how my son is feeling about it, weird thing is that the day after when he woke up he has been speaking in a welsh accent ever since, stress induced i know because we dont know anyone welsh or that speaks iwth that accent just what on earth has happened to our school where they can find this acceptable - I would tell then I'd be sueing them and that would shake them up and make them think about what on earth they did this for.I have put a complaint in iwth the police, they say they were justified and dont know my son so done what they did based on the classroom being wrecked and the call from the school Heck if you handcuffed him at home I am pretty sure the Social Services would be out with a few words to say about it. Now I am cross as that is despicable. As is the exclusion about the trip - we had this with my son and the school play as he would not dress as a snowflake and sing in front of everyone (he is 3) and they told him he either did as they told him or he would not be able to go to the School Xmas Party. So I kept him off school for the play so he would not be excluded from the party!! God i feel !!!! this morning! thinking about it all. I have kept the kids off school, upon thinking about it i will take my other 2 into school next 5 mins and keep my son home and return him tomorrow. Dont want welfare on my back too jesus as if i dont have enough to contend with at this rate ill be on 6 0clock news lol

Have you asked around via Social Services to see if there are better schools in the area that can deal with children such as yours. Someone else mentioned about their son being sent to a Special School for a term or two, like a time out I guess, maybe you want to give this some thought, it might be an idea as there would be more qualified people to observe your son and see if you can get a diagnosis this way. Your son is already being excluded for all but 2 hours excluded teaching so what would he be missing out on and they would be better qualified to deal with your son when he has a meltdown. Don;t be scared, you might find it helps. What are your thoughts on this - does anyone else have any thoughts on this, if Sarah's son is not getting anything but 2 hours a day then would she be able to ask for this via SS or the LEA? It might be worth asking around to find out if nothing else. As for schools every professional i speak to says mmm maybe think about moving schools for my son BUT theyre not allowed to recomend, I am seeing another school friday that is more special needs geard to help him. Yes i wouldnt mind him going to special school but you cant get a child in without a statement so at the moment situation is a catch 22.

I am sure this is having a huge toll on you and you sound stressed as it is, can you not get a doctors note for a few weeks/a month off (Stress? Depression?) so you get paid while trying to sort it. It is not a lie as you sound far from chilled out. Maybe a visit to the doctor will help you as well. I am stressed big time but dont want to go down the route of meds and all that crap./ I need to be here for my son not for them to find another excuse to blame someone else or something else for sons behaviour.

I am always on here moaning so please, please do come back and let us know all that is going on and if you need to have a vent then you are welcome to and don't feel bad. I have had this for just a few months and get frustrated, I cannot even begin to imagine how you must be feeling so go and see the doctor, at least you'll be home for your son when he needs you to be and you'll be able to deal with some of that stress rather than being called out every 5 minutes.
God dont feel bad moaning we all need to do it there is not one story more or less worthy of support on here we are all in the same boat either now or have been and each situation is worthy of help and support, i am so greatful i found this thread.
I feel bad for moaning about my tiny problems now I have read Sarahs story, please let us know how you are today Sarah. Sue has so much advice to give so please do as she says and call IPSEA. xx

You guys are great!

NoahsPennilessMummy

also Sarah....how long have you being undergoing the statementing process? I dont know if you are aware but there are strict timescales they should adhere to....the whole process has to completed in 26 weeks and there are timescales within that for each stage of it.

Once they are statemented I find you have more people you can get help from.
DS was lucky as he was diagnosed at 2 at statemented straight away as he was attending an autism centre 3 days a week for intensive therapy.

He has an LEA caseworker and I found contact and help from her to be invaluable when dealing with the problems I had getting mainstream school sorted for him.

shazrobo

i am suprised to hear that the police handcuffed your son pw, wen my son had a particularly bad outburst at the age of 9 the police were called, but because he was under the age of criminal responsibility, they said their hands were tied and they couldn't touch him, so they radio'ed thru and got an ambulance and two paramedics, to assist, one of the police officers came with us in the ambulance, and my son was sectioned for his own safety.
he was on a kids ward because of his age, and because he was so violent, had a security guard, to prevent him attacking the nurses.
the security guard, showed me how to use the technique on daniel so i can restrain him, without causing unneccary harm
my social worker is aware of difficultieas regarding my sons, and says restraining them for their own protection or for the protection of others is perfectly understandable, and she would have no problem eplaining this to any one who decided to report me.
incidentally the staff at daniels school are also trained in restraining kids safely, but as a special resedential school, not sure how they would cope otherwise

NoahsPennilessMummy

oh and BM.......dont you dare feel bad about moaning!!!!
everyones problems are important, especially if you are the one going through it.

We should all be proud that we work so hard to give our wonderful special little ones(and some big ones;) ) the best life possible:T

its a hard job and thank god we are in the days of the internet where we can support each other and not be isolated.

D&DD

Jesus Sarah I thought my school was bad but yours sounds even worse :eek:
What a scary thing to happen to your dear boy...I am so upset to hear this and BLOODY ANGRY TOO :mad:

When the rate of Autistic Spectrum Disorders is growing daily at a phenomenal rate why oh why are they not giving the staff the tools and knowledge they need to help our kids???

They need specialist help in many areas and if the powers that be continue to insist they are best suited *harumph....* in mainstream why not give them some flippin' training then??????

*shakes head in disbelief*

Big squeezy hugs Dee XX