ASD & Early Years Provision

[Buddy80]

Hi all,

Opinions very welcome. My son has ASD and currently attends a special nursery for 2.5 hours once a week (40-mile round trip). There he recieves in-house speech therapy assessment, etc.

We also tried with a main-stream pre-school who were aware of his needs To cut a long story short, it was a disaster and he no longer attends.

I contacted the Early Years Advisor that has advised that as there are no other special needs pre-schools in the area, the once a week 2.5 hours is all that they can advise. She did suggest maybe a childminder?

I have independently, found a special needs respite centre (I will be paying for the sessions myself).

This is all the help we can expect? He is not statemented, but we have been told by the special nursery that this will be arranged once he has seen the Ed Psych.

Many thanks

[Buddy80]

Sorry, forgot to say he is 3 years and 4 months old :-)

[MangoMonster]

How about ABA through a nanny? Just a thought, not sure if it's suitable.

[MangoMonster]

Meant to ask how old he was, I'm sure others will come up with ideas. We are using Aba and hope to have DS in a mainstream preschool with an ABA shadow in the mornings and ABA session in the afternoon. Might not be suitable for your DS, but I'm sure more experienced parents will come along and advise.

[StarlightMcKenzie]

Buddy, if I were you I would go to the IPSEA website and download the template form and ask for a statutory assessment (in order to get a statement) now in order to make sure it is all in place by the time he starts school.

If you wait, then you'll get delayed by 'the system'. Since you aren't particularly in it yet you'll likely get a smoother, faster path.

And do research ABA.

Where abouts in the country are you too? Someone might know of things locally?

[Buddy80]

We are in Wiltshire

[lisad123]

Sad to say that in our experience the only help we got was what we paid for

[Buddy80]

Thank you so much everyone. The special nursery is handling all the statementing, etc. Have been told by them that we will have another team meeting (all professionals) at the end of this month, the Ed Psych and then apply for the statement. So I am torn as to whether to get the ball rolling.

Thankyou, I will do some reasearch on ABA

Its hard, as I think because at this stage he is not getting much, that we (as parents) are failing him in this crucial time IYKWIM

[StarlightMcKenzie]

Buddy, I can only tell you what I would do and that is to apply for a statement myself NOW regardless.

My experience tells me that you'll have that meeting and be told to wait for something, then what you are waiting for will happen and you'll be asked to wait for something else.

If you apply now, the LA can take 6 weeks to decide and your meeting in a month can feed into it anyway.

Also, by applying your self you are taken more seriously, but more importantly HAVE to be copied into all paperwork which places you well if you have to challenge/appeal.

[StarlightMcKenzie]

An EP doesn't have to see him to apply, it is only if they go ahead and assess that the EP becomes involved.

[dietstartstmoz]

I agree with starlight, phone your LA special needs dept today and tell them you are going to request a statutory assessment, and ask them to send you the appropriate paperwork, don't let them fob you off. When I spoke to our LA SEN team the woman I spoke to was useless, until I reminded her I had the right as a parent to request stat assessment. I'm sure the nursery will also do it, but if they do drag their feet, as Starlight suggests, you have already informed the LA about your request and everything is dated, x amount of weeks from today etc. 2.5hrs per week is a paltry amount.

[Buddy80]

You are all right, as daft as it seems one of my concerns was not to upset the nursery and their process - daft!!!

I know, 2.5 hours is not great. All these people and contacts involved in my sons care seem to be busy with it all on his behalf but we are not receiving much at all.

goes off to apply

[StarlightMcKenzie]

Buddy, Shortly I'll share something with you, that I wrote when I was in your position.

[StarlightMcKenzie]

Hello, my name?s Starlight I am a parent to two children, Sonny aged 4 and Maria aged 3. Sonny was diagnosed with ASD at the age of 3yrs 9months. We had to pay privately for the diagnosis, because although the NHS ASD pediatrician had seem him and confirmed to me verbally there was no doubt, she was not allowed to make an official diagnosis without a multi-disciplinary assessment for which there was a year long wait.

Initially we were comfortable with this wait. We were assured that provision was based on need rather than diagnosis and that we would be referred to various agencies. But then the letters started to come through ?Dear Starlight, Your son has been placed on file PENDING diagnosis?. So that led to our first encounter with the independent sector.

£700 for a signature. We went through the motions at that appointment with the highly respected private pediatrician. To feel we were getting our money?s worth we kept her there for the two hours asking questions we already knew the answers to. There wasn?t really anything to say. There was no doubt. We just needed a signature.

We?d done it! We?d got the golden ticket to access services that could help
us.

Well now. I have to explain. Until that point I had been a believer in the public sector. In fact, I worked in it in one capacity or another my entire working life which is why, when I asked the Special Needs Health Visitor what programmes of intervention they had in store for Sonny, and her response was ?well, no one programme, this Local Authority picks the best bits of everything and matches it to your child?s individual needs? I knew very well what that vague statement meant.

I am not a natural fighter but somehow, over the last couple of years I have had an incredible amount of practice. I suppose when you go into high adrenaline meetings week after week after week just trying to get a straight answer about provision, you start to lose your sensitivity and become a bit more direct and focused.

I remember by first multi-agency ?Team around the Child? meeting. I was there, humble, hopeful, scared, on the verge of tears, desperate. It sounded absolutely wonderful. This person was going to 'advise', that person was going ?write a report?, someone will 'refer', another person was going to 'monitor' and another going to send my son?s case to a 'panel', and someone else was going to ?flag up? his needs to a 'board'. Yet another person was going to put together a 'programme' and someone else was going to 'assess'. We were going to get 'support' and my son was to get 'therapy'. Someone else was going to 'investigate' the 'opportunities' that our LEA had for children such as my son, and someone else was going to 'liaise' with us.

A couple of months went by and in that time it was business as usual. No-one had come to see Sonny, and I had not spoken to any professionals about him. I made some phone calls I realised that some if not ALL of the above was happening in terms of moving funds and delegating money to people's case-loads, but yet not one single OUTCOME had occurred for my son. The reason we had not seen anyone was because they were all far too busy referring, and investigating and writing programmes or whatever. I started to phone people and do a bit of complaining and apologising and in my desperation to understand the process, somewhat agreeing with the idea that he's only little and we have lots of time.

Then I came across a fairly blunt Speech and Language Therapist from another Local Authority who simply said 'Stop whining and do it yourself then, and get a bloody move on!' The best advice I ever had!

Starlight - A parent.

[Buddy80]

Starlight!

What a brilliant post! Oh, it rings so true with what has happened with us. Thank you for taking the time to tell your experience.

Still waiting for diagnosis...

A locum paeditrician saw my son last time and said "oh yes, ASD" but when the written report came, there was no diagnosis in writing. I was a little surprised as previous assessments had toyed with the ASD word, but not really committed. I do wonder if it is worth writing in for another assessment for diagnosis?

Yes, we have a had a TAC meeting. Yes, my son goes to a special nursery for 2.5 hours a week (but that was due to a one-off SALT appointment who did a refferal which we took forward). Thats it. I enquired for extra speech therapy and was told that we can go on a PECS course and that he gets assessed at his special nursery.

I have written to my Early Years Inclusion Advisor and also my Key Professional this afternoon . If nothing more to hightlight what he is not recieving.

My son was due to have an OT assessment. This has been delayed over many months, and have had a response and apology that its due to a mix up and system change. Well, still no OT though.

Its funny, I always felt that the answers I get were vague. When my sons mainstream fell through, I asked about increased hours at his specialist nursery to be told that it would be discussed at the next meeting in 3-months time. Why?

Now is the time I really need to get more stuff in writing. I have been told that my sons name is on the waiting list for NHS ASD assessment as part of the diagnostic process. I was tempted myself to go for a private diagnosis, but I heard that they pay little attention if not in "the system"?

The soft side of me doesnt want to upset the apple cart, but I cant help but think he will hardly do any worse.

[StarlightMcKenzie]

Buddy, if you can afford it you can do what I did and have a private dx but INSIST that it is a second opinion that just came first and keep you NHS one.

I was also careful (which explains the expense) to chose a private paed who was a well respected NHS paed that just did a bit of private work as she had a reputation to protect. No-one could dispute her dx but I hung onto the NHS one still just in case. As it happens, in law, private dx are to be treated equally in the statement process.

And sorry for this but whilst you do need to be polite to the people working with your ds, they will not remember his name in5 years time yet you and he will be living with the fall out of the unnecessary waiting and mistakes.

Good luck.

[Buddy80]

Thank you very much. What I am a little confused about is that we will probably be waiting a year for a formal written diagnosis. If we go and get a private diagnosis that would have come first as it were and surely we would not be able to class it as a second opinion?

[StarlightMcKenzie]

Wot Justa said. Don't worry about it. You are entitled to your NHS one so keeP it. Officially it shouldn't count against you having a private dx, but this is just to make certain no-one that doesn't know this can dispute it.