I feel so hopeless i just dont know want i can do

[twocutedarlings]

My 5 year old daugher has just started school 3 weeks ago. And she has also just be given a diagnosis of Aspergers. We are have alot of problems helping her settle into school life, her bahviour has been quite extreme and not atall like my daughter. I feel that she is just not copeing. School want apply for a statement but in the mean time she only has 2 hours per week with a support teacher from the early year inclusion team. Im really concerned about the emotional stress that my daughter is being subjected to in the time it will take to get a statement. Do you know atall how much support school are expected (if any) to supply for Sen pupils without a statement.

Im just a at my wits end i dont understand how the system works. and i just feel like pulling her out of school tbh. i can see that DDs not happy, but she obviously doesnt know how to let me know.

School use a traffic light system for good/bad behaviour. if the children stay off red then they are allowed to attened the schools golden hour on fridays, this includes a disco, movie club, lego club allsort of fantastic activities. her teacher has said that if DDs extreme bahaviour continues she wont be allowed to go this week.

i dont want to kick up a stink as school have been quite supportive so far, but they dont seem to have a clue how to work with children with ASD. She has differant teachers for alot of subjects and has to go into loads of differant rooms. So dd is all over the place. And they then look at me for reasons why DD behaviour is poor.

How can i tell school that there system is just not going to work for her unless they are willing to give her more support.

Hi sorry to hear you are going thru this.

My ds (7) is on SA+ which is the stage down from a statement. He gets 3 sessions a week of social skills training. He also gets support from a TA who is in the classroom but only for 2 hours a day and he has to share the TA with another couple of kids who are on SA+ with other problems. Things do appear to be getting easier now he is getting the support he needs.

Reception was a total nightmare and I don't think ds was in anyway ready to cope in mainstream. It is really good news that the school is prepared to apply for a statement - this shows that they are going to try and support your dd. I think she will need more than 2 hrs a week but there are a lot of simple things the school can put in place to try and help her. The Ed Psych should be able to advise on this point. One other suggestion: whilst you are waiting for a statement to come thru could you think of taking her out of school 1 day a week or just bringing her in the mornings. I wish I had done this with my ds as he just could not manage full time school in reception.

Hi

You as her Mum are in a far better position than school is with regards to applying for a statement.

You can do this, there is nothing to stop you today applying for such a document. Don't wait for the school to do it, you could be waiting a long time. Time is of the essence here; it can take six months for a Statement to be fully in place.

You need to write to the Chief Education Officer at your LEA (the local council offices should be able to give you the name) and start the ball rolling today. IPSEA are very good at all this and there are model letters you can use. Their web address is www.ipsea.org.uk. Please look at it, its designed to help parents with childrens' special educational needs.

Ultimately though even with a Statement in place the school may remain unsupportive and you may feel she needs to go to another school where they are hopefully more understanding of her difficulties.

No statement to my mind equals very little support. What have the Early years inclusion team actaully done, have they talked to the school at any length?. They usually though only operate in an advisory capacity. I would find out what they have done to date, is there for instance an IEP (individual education plan) in place for your DD?.
Have you met with the Special Needs Co-ordinator? (SENCO).

Another thing I would seek further advice about is their apparant reluctance to include DD if her behaviour is poor due to AS. This can perhaps be seen as discriminatory; again IPSEA will have details on the web pages. Someone else may reply with some information re this point you raise.

You as one of her parents are her best - and only - advocate. You need to fight for her educational rights because no-one else is going to do it for her.

Contact the NAS (National Autistic Society) as well. They can give further help and advice. What you need as well is more support for your own self. Arm yourself with knowledge, knowledge after all is power and you will be less likely to be fobbed off.

hi twocutedarlings
sorry to hear you are having such a stressful time.
First of all, it will be difficult time for you. Starting school can be a difficult time for many children, even without the added stress of having the AS DX.
Did you get proper support when you got the DX?
Did you choose her school knowing that she had AS?
Do you know if there are other children in the school, with a similar DX and do you know how the school copes with their needs?
Sorry to ask so many questions.
Anyway from my experience, the school does not have a set level of support that they have to give to a child prior to them getting a statement. What level of support you usually get will depend on the amount of money they are able and willing to spend, and this is often decided by how difficult the childs behaviour is.
This may all sound a bit grim, but in my case, in the long run it worked in our favour.
My DS was put on the at risk of exclusion list, which at the time I was really worried about, but actually it was of great help in getting him a good statement.
Find out if your LEA have a dedicated Autism team, if so, the school should seek help from them to decide what level of support your DD needs to manage at the moment.
If the school has little or no experience of children with AS/ASD they often make the mistake of thinking of them as naughty, defiant children, and can come down hard with punishment. This usually has the effect of making the children even worse, so it is really important that the people who are dealing with her have some understanding of her condition.
I am always pushing my senco for training of teaching staff, but it is a bit of an uphill struggle. I take in books and give them to my DS teacher and try and make sure she understands why he can be difficult at times, but if you have someone who isn't willing to be patient, it can be difficult.
Getting a statement can be a long process, but your school have to try and provide for your DD as best they can in the meantime. They can apply to the LEA for emergency funding, so don't let them say they can't do anything.
I hate to say it, but if you sit back and wait for the school to come up with the answers, you may be dissapointed, I have found that you have to make lots of noise and keep on about things or nothing happens.
Remember its not the individual school, or teachers that you will be fighting, its the rubbish system that doesn't support parents that is the problem.
Do you have any AS/ASD parent support groups in your area? I have found it very helpful to speak to others in the same position as me.
I would start by asking for a meeting with the SENCO and express your concerns and ask them what they can do to support you and see where it goes from there.
Good luck

Hi Thankyou both for your replys.

Attila, So far Early years have put inplace a visual time table for DD this has been in place for a week now.

It obvious to me that this alone is not enough, DD has gone from screaming out to now lashing of at the other children. This is the first time that DD has ever hit another child other than her own sister, but this only happens if DD2 has clearly pushed her to far.

The early year coordinator is going into school tomorrow to observe DD, and from this they will do a IEP for her.

As for the traffic light system, i have told DD teacher that her lashing out is completely out of sort for DD, so hopefully she will have taken this into account, But like i said i really dont think that school have clue about kids with ASD and i think that they are treating her bahaviour just as poor and are not really trying to find out why she is doing it.

isgrassgreener,

Did you get proper support when you got the DX?

No support atall, DD only started gher assessment at CDC mid july. so its all happened so quick.

Did you choose her school knowing that she had AS?

No we didnt have a clue, we actually applied for her school place in sept 06, at this point we just thought that she had a develpmental delay with social problems.

Do you know if there are other children in the school, with a similar DX and do you know how the school copes with their needs?

I dont think they have and other ASD children. DD teacher did say that she had worked with one child before on the spectrum, but tbh, the way she is dealing with dds problems is making me think other wise.

Thanks for the advice re emergencey funding, this is what i think she needs.

Im waiting for Senco to call me this afternoon. so i will see what shes got to say.

Thanks again for all you advice.

Ps we do have a Asperger support group in our area but dd2 is only 2 and doesnt start preschool til January. So im not able to make it as i dont have anyone to help me with child care.

When we got the DX for ds2 they gave me a reading list and sent me off saying if you have any questions give us a call.
That was in July, DS went back to school in sept into yr 1 and it all started to go very wrong. Lots of problems with hitting and biting others. His teacher didn't know how to deal with him (in her defence she did not get any support) and just used to send him out of class all of the time.
A lot of his problems came from sensory issues and he felt too enclosed and overloaded being cooped up in a classroom, having to follow instructions all of the time.
Silly little things became big issues, ie they make them all sit on a table together and expect them to share books, pencils etc. Giving him his own space and not expecting him to share books made a huge difference.
Lining up was also a really big problem and of course the playground. Mention all of the above to your SENCO and see if they can make some adjustments for your dd. Try and get as much as you can on your IEP.
I think the hitting out was frustration at not being able to control the situation.
It was very distressing for me, I called and did get a lot of help from the CAMHS service, one to one advice to start with, then they started a parent support group which ran for almost a year, we used to meet up every two weeks.
I also phoned the NAS and did the "help" course, if you go on their website you can find out if it is running one near you. I found it really helpful as I was really stressed out at the time, firstly just accepting the DX and having to deal with being the parent of "that naughty child" at school.
One of the most difficult times for me was pick up at the end of the day, as I would dread the teacher coming out and telling me what a bad day he had. I asked the SENCO if we could have a contact diary, so that all incidents, worries etc could be written down, and hopefully good things. This has worked really well, and we still use it every day, it makes it much less stressful for me, as you really don't want to have to stand in the playground discussing things infront of everyone.
I would still advise you to try and find out if you can go to any parent support groups, see if you can take your other child with you.
Contact your local parent partnership, they will know of any local groups and can help you with the statementing process as well.
I didn't know about MN at the time or I would have been on here as well.

Just wanted to add on a brighter note.
DS2 is now in year 3, he is the most lovely boy, no longer agressive, liked by others, he is kind, polite, helpful and smart.
We still have problems, this year has started off with a few issues and his teacher is new to it all, but, it is fine.
He is happy, I am happy and life is sooooo much easier than it was.
He is a bit different than the others, but I love him all the more for it.

Thanks again for you advice isgrassgreener,

what you have written about your DS problems at school almost mirrors my DD dds issues.

I am so pleased to hear that he is now copeing ok, because at the moment it feels like there is no end to it, so far all i have spoken to DDs teacher about is problems.

I have already asked for a home/school diary, i will mension this again as i feel that a big part of the problem is a lack of communication between school and us.

Thanks again for your advice

Hi
I just thought I's mention homestart to you as if they have a branch in your area they might be able to provide someone to come with you and look after your DD2 while you were at the AS playgroup with your DD1. I have a homestart volunteer to help my DS2 (4months) when I take my DS1 to his therapy group, and it works very well. Google it to see if there is one in your area, it is free and fantastic!

Reception was a nightmare for my chap. He hadn't got a clue what was happening to him. However, the school was fantastic although I did find they wrote down EVERY last little detail in the homeschool book. They gave my son a workstation so his own desk, chair and space with photos and visual timetable. They gave him his own space to sit in in assembly. We were lucky we got the statement Asap because the head phoned the LEA and said she wasn't going to keep him if they didn't give full support. Little things need remembering like saying her name when giving instructions as 'everyone' won't mean anything to her. Also making them realise that she is suffering from sensory overload and if they walked into a room noticed every little detail, heard every sound and felt even the slightest movement they would probablly want to scream their heads off as well.

It did get better! It was a learning process for all concerned but the sooner your daughter gets some 1 to 1 the better.

Hiya, I ahve 2 asd kids, one with hfa and one with asd

I found that orinting loads off the NAS website really helped with the school, in terms of them developing awareness.

definitely apply fro a state,ment yourself- if say it was refused at teh first hurdle you'd be able to appeal etc, school wouldn't have as many options in law.

Would back up homestart- used to be an area organisewr (pre dx's) for them, they're marvellous and their volunteers are gems.

It will take your dd time to adjust, penalising her for behaviour beyong her control (the traffic lights) would concern me as an overl;oad isn't something a child can prevent unless theya re able to withdraw from a situation- a frequent cause of issues in school (for my eldest its playtime that is the problem)

yes to a visual timetable but check how they're using it, homeschool book, social stories are worth looking itno 9websites and amazon book available)a s away of trying to modify behaviours. And the NAS have a fabulous education line that can hlep as well.

XX

Oh- a useful tactic- ds was assigned a safe palce for him to go alone to if he felt it was too much. It was a picnic table outside and didnt alst long (another teacher took it away) but it did really help.

Thanks again for all your support, you are all a massive help.

But im afraid DDs problems have esculated even further today and to say that im heart broken is an under statement.

Since starting school DD has also had lots of accidents getting to the loo in time at home and at school, to the piont where she is sometime just sitting there and doing it.

This morning DD had an accident while in the classroom and then went on to strip off, she has no awarness that this is the wrong thing to do in a class room full of kids, as far as shes concerned shes wet, so she needs to take her clothes off. So she stripped off from the waist down in the middle of the class room. Later that morning at break time two boys in her class (but a year older) pulled her Skirt, knickers and tights down in the middle of the playground. Both boys have obviously been reprimanded (sp?) by the head and both of there parents have been informed. But im slowly looseing faith in this school. It just seems to be one thing after another.

I have explained to her teacher that DD will not like people in her space and this is why, she is behaving this way. But she just doesnt get it !!! Personally i feel that however nice this teacher is she just doesnt want the kids that dont know how to do exactley as she says. Its like she thinks she can make my DD NT.

So ive decided that if i still have no faith in this school in say the next 3/4 weeks then im going to move her. They can either give her the support that she needs to adapt to there school stystem, or i will find a school that have a system that is better suited to her needs.

There's a lot of sense there- do you go to any Sn groups or anything in your area as it does pay to ask before you swap. Also, be aware that if your dd is statemnted the panel could recommend a sn school, and that would mean a third school change- from experience we know that its impossible to rpedict (everyone thought DS3 was off to SN unit, but Panel refused it).