feel like I am fighting a losing battle

[A and A]

Hi there mum here to Liam who is 3 in october we have a lovely little boy who is showing all the signs of a Autistic child and we have had his hearing checked as we thought he might be deaf as he doesn't respond when called but his hearing his fine so now a referral has been made to the cdc and SALT, and a referral has been made for Liam to have pyhsiotherapy as he has problems with walking, and we have sent off the applications forms for portage in our area, the DLA form is nearly completed now and almost ready to be posted. I phoned up our local council and spoke to someone in the special needs department and asked for info on Statutory statement of education and was disgusted with the attitude of the person I spoke to as if they didn't give damn her attitude was wait as he is too young and come back basically when you have a diagnosis and more evidence, so just feel I am losing the will to fight this battle.

 

Anna (aka A and A)

[bid]

It sounds as though you have done loads in a relatively short time

 

TBH, you will need assessment reports rather than referrals before you can start the Statementing process as the LA do need evidence in order to proceed.

 

Good luck, and try to be gentle with yourself. You have done everything you can for now <'>

 

Bid

[Karen A]

Hi Anna. <'> <'>

I know from reading this post and others that it is only a little while since you first found that Liam might have ASD.

I think it sounds as though you have already managed to do a lot of things in a short time.

It is natural to have some days when things feel very difficult.Unsupportive people do not help.

I know it is very frustrating when things appear to be happening very slowly.However I know at first that we did feel that we needed to get everything done at once.

I am sure you will probably think it is easy for me to say.But Liam is the same Liam that you had before you knew about ASD.

There is time to get things done.

I have learned after many hours spent frustrated and cross that parenting a child with ASD is a marathon rather than a sprint.

Even now after three years I am catching my breath before embarking on the mountain climb that is secondary school.Karen.

 

[skye]

Hi Anna,

I just wanted to say I know how you feel. I started bringing my DD to a family psychologist in my town when she was around two. I was sent to a few different parenting classes and signed up to have a family support officer and everything before they would even look at the possiblity of Autism. I just kept being told over and over that they would not even consider "labeling" her until she was at least 5 years old. This seemed outrageous to me but I plodded on and did what was asked of me until they could ignore it no longer, which happened last year when she was 4. I have been awaiting the diagnosis for over a year now. Also her statement of special educational needs will not come through until October. Lib has been moved schools once and has had 2 fully unsupported years in mainstream where she has struggled to the point I was considering home education. The school have now moved my DD down to 3 halfdays per week because they cannot cope with her behaviour.

I know it is really frustrating but unfortunately this is the way the system is and I thing you have done really well to have things rolling at 2. If only they would have listened to me at two. The SENCO at school is actually waiting for the full diagnosis to come through to submit the statement, so what they have said is probably right. Statements are complicated. The SENCO says she is up to 8 pages on Lib's behaviour alone. So you will need to collect a lot of evidence. Even at the slow moving pace of everything it sounds as though your child will enter school with support. You can't ask for more than that! So chin up and keep doing the good job that you are doing getting everything sorted.

[Sally44]

If I understood your post correctly, you were just trying to find out about the statementing process and how it works. It might be worth speaking with your local parent partnership or NAS to see if they are holding any seminars on the SEN process in the next few months.

The NAS also run Help programmes for parents whose children are newly diagnosed (or in the process of diagnosis), and also Help 2 programmes for information and advice for parents after a diagnosis.

Outside agencies or the LEA can sometimes appear very unfeeling. I suppose it is their job and they get used to giving answers without thinking about the person/family/child behind the question or request. I remember the head at my son's previous school having a meeting with me where she said she wanted my permission to ask for the educational psychologist and speech and language therapist to come in and assess my son. Then she said that it might be that my child needed a special school. I was so shocked and knocked sideways that I don't think I said anything (which is unlike me). I was also very angry because I had raised concerns when he was around 3 and everyone fobbed me off.

So it has and does happen to most of us. Bad days are horrible, especially as you are trying to come to terms with the implications of all the assessments, whilst also trying to keep it all together and find out information as well.

The Parent Partnership should be able to send you information about the SEN process and they should also be able to tell you which schools in your area have experience of teaching children with autism. The NAS also has a list of schools that you can access via their website. I looked on there to find the local schools that are special needs or Enhanced Resource. But the PP will be able to tell you which types of school are available in your area. You can phone those schools direct and make an appointment to look round as a parent who may have a child that needs a place at their school.

Where is your child in the SEN process at the moment. Is he on early years plus?

Maybe the first step would be to find out about any SEN seminars, and then get some info through the PP about the Statementing process. Then speak with professionals as they become involved with your son and get their opinion on the kind of educational environment he may need. Then have a look around the schools when you have a better idea of the kind of questions you want to ask them.

If you find out when school places are allocated for your childs intake year, then that will give you a timescale for when the SA process should ideally be started if there is enough evidence at that stage.

 

Maybe others will explain better about the age a diagnosis is given. I do find it very confusing when they say that 'early diagnosis and therapies' are very important, and then keep you waiting for a diagnosis and therapies for years because they don't want to give a label. I thought there was a huge initiative recently about nurseries being aware of children and whether they were babbling and interacting etc. Children can and are diagnosed at age 3. I feel my own son could and should have been diagnosed at 3 instead of 6. That would have made a huge difference for the better. I am more afraid of an anxious/stressed child becoming totally anti school because they are unsupported in an inappropriate educational environment.

 

 

[A and A]

Hi everyone, thanks for the brilliant reply's we've had in our post's.

 

We've managed to get our LA to a least send out the documentation so we can apply for an assesment, so thats a start.

 

I fail to see how they could possibly refuse to help our son, he doesnt speak at all, just makes noises. He doesnt respond to anything we say, not even his name. We know it's not his hearing as thats already been checked.

 

He appears to be oblivious to everything thats going on around him . Of the hundreds of toys we have around the house there is only a handful he will take notice of, they are all the same type press a button to make a noise, nothing else gets his attention.

 

He's does'nt point at things or pick things up and bring them over. When he's not watching his fav tv programs he just wanders around making his noise, feeling his shirt collar or sleeve. Unless he makes great improvement over the next few months i cant see how he could manage in a mainstream envronment without support. When his older brother was 3 he went to a nursery that was part of a primary school, there is no way he could do that without a lot of support.

 

 

Anthony

 

[Karen A]

Hi Anthony. <'>

I had not picked up from the other posts that your son does not speak at all.I think he will be three in October is that right.

I can understand from the last post why you are both concerned.

I think that the most important issue in getting any support in your situation is probably to obtain a mult-disciplinary assessment as soon as possible.

Although Statutary Assessment is important if you are hoping to obtain Specialist provision a diagnosis of ASD would be needed anyway.

It may be worth phoning CDC to find out how long the waiting list is.

There should be guidelines in place regarding waiting times and the length of time for assessments to be completed by CDC now.

At least CDC should be able to tell you how long the waiting time is for a first appointment.

It is worth bearing in mind that in my case Ben has AS and was assessed via CAMHS.The waiting lists for cases as ours would not be regarded as such a high priority.

I think that your situation may well be regarded by CDC as a high priority for assessment.

Sometimes it is worth being assertive.Perhaps it may be worth letting CDC know that you would be willing to accept a cancellation or appointment at short notice if one becomes available.Karen.

Edited May 22, 2009 by Karen A

[Karen A]

Hi again Anthony and Anna.

I think I had posted on your other threads in the last few days.

Now I have a bit more information I thought it might help to offer a few more ideas.

I will post them here because I am not sure where the other threads are.

It is late for me and I have been chilling out with the red wine.

It may be that you may be classed as a high priority for Statutary Assessment if Liam is nearly three and is not talking at all.

It may be worth thinking about requesting a Statuary Assessment yourself.

It may also be worth obtaining information about specialist provision for ASD both in your borough and in neighbouring areas.

It might be worth visiting a few to see what you think.There is information around on what to look for so if you need some ideas please ask.Karen.

[skye]

Yes, I had not picked up on your other post either. I too can understand why you are so worried and in such a hurry to try and get the statement and provision sorted out now! I really hope that they are able to get your son assessed sooner than later to help him early on. Sally was so right in saying that they urge and urge that early intervention can help in the long run extremely well. You think that the agencies involved would take that into account when dealing with these cases.

You are definately in the right place here and there are some wonderful and knowledgable people here who always have really great advice and links to where you should be going next. I hope things get moving for you and keep up the good work! Try not to let ignorant people, like the one on the phone get you down. There are people on your side who will help you on your way to where you need to be, just step over the non-helpful ones and keep on truckin!!

[call me jaded]

Yes, make your own request for assessment. There's a model letter here. The lack of speech and the referrals to SALT, CDC and PT are sufficient evidence. It's a six month process and you should be in time for support to be in place for a slightly delayed start in September. Your local Parent Partnership Service should give you an idea of what specialist nursery provision there is locally.

Edited May 23, 2009 by call me jaded

[puffin]

I really feel for you I know first hand the frustration

 

Having an SEN child is a marathon rather than a sprint - sometimes the process can take a long time - in the case of my own daughter 13/AS there were many concerns raised when she was 2 - yet diagnosis did not come until she was 8. The actual diagnosis period in the system was over 1 year as there were over 20 appintments to see paed, psychologist, OT, SEN pedagogue, SALT, physio and SEN nurse.

 

So my advice would be to press to get the assessment/diagnosis system rolling so that you can get a firm evaluation of the problems and needs - as this is the key to getting support and it will also be important to rule in/out other types of developmental and speech and language delays which might need their own types of support. Also at 2½ it might be hard to make an accurate prediction of needs - for example our DD2 flagged concerns for ASD at this age as she did not speak at all - yet it turned out to be a speech and language delay unrelated to ASD and by 4 she was speaking fluently and is NT.

 

You could also find out about the SEN policies in your local authority - many nuseries and schools have a certain level of devolved SEN funding so there's no reason that they shouldn't be able to provide support prior to the full diagnosis - especially in the case of the needs that you describe such as no speech and a walking problem.

 

I don't want to depress you but you need to be ready for the long battle ahead - you may find yourself fighting for support and resources for the next 15-20 years so you need to prepare yourself.

 

However you seem to be doing a great job and have got a lot done aleady. :dance:

 

[thomastank]

 

Hi Anthony and Anna

 

I just wanted to say too that I didn't realise that your son was non-verbal and my post on another thread re statementing (about waiting to see how he copes in school before applying for statement) was inappropriate. I think the others have given good advice as far as getting help now and you are doing a fantastic job especially as this is all so new.

 

I really hope you find all the answers you need and there are some great people on here who can give fantastic advice and support.

 

xx

 

[Karen A]

Hi again Anna and Anthony.

http://www.sncwd.org.uk/documents/national...plan%202003.pdf

This document is I think the latest guidance for professionals regarding assessment for ASD for children.

It is a bit wordy.However I have found the information regarding time frames for assessment that might be useful.

I think the CDC should be broadly aiming to follow this guidance.

Once a professional has a referal they should contact you within 6 weeks to discuss the referal and the plan for assessment.

The stage one assessment which would include general health screening and initial assessments should take no longer than a further 13 weeks.

The second stage which would involve speciaist assessments with a mult disciplinary team specifically trained and specialist in ASD should take no longer than a further 17 weeks.

So 36 weeks in total.

When Ben was first picked up as requiring an assessment for ASD diagnosis he had not had any previous support in school.He was at risk of exclusion and was not coping well at school.We actually started diagnostic asssessments and requested a Statutary Assessment at the same time and they were done alongside each other.So it can be done that way. Karen.

[lynne]

 

Hi Anna and Anthony,

 

You have already been given some very good advice.

 

 

You do not need a diagnosis to have an assessment or request an assessment for a statement.

 

 

According to English law the child does not have to be in full time school until they are 5 years old. So if your child is older than that they should be in school full time. If school can not cope, the LEA keep emergency funding for these events. So the headmistress should request this. The LEA do not advertise this extra funding because they would expect all the schools to help support and fund the child themselves.

 

My son was also non verbal at the age of 4 years but he has progressed and now does not shut up. So we never know what can happen with out children. Good luck in your statement prepare for a rollercoaster of emotions. But it sounds like you have already starte