New and confused - pre-school and statementing

Hi One Black Cat

Thanks for the update - was wondering how things were going for you. I'm sorry things still seem a bit up in the air for you and your daughter but take some encouragement - it CAN be done.

To update you on my son: I went to the meeting (mentioned in my last post) and astonishingly no one from the LEA turned up. However this turned out to be a blessing in disguise as the meeting turned out to be really productive without all the attendant bureaucratic ramblings. The upshot was that two (of the three) members of the LEAPS (Local Early Action Plus Support) funding panel were there and it's apparently their responsibility to recommend children for placement in a special school or for additional funding to cover until the full statement is in place. I told them I wanted my son in a special school assessment unit and that he would under no circumstances attend a mainstream school. They offered to help me fill in the form to include all the "magic" phrases that would tick all the boxes and get what I wanted. We filled it in, they passed it at the next panel meeting and within 3 days the LEA had phoned me to tell me that my son had a place at the school I wanted. He started three weeks ago and loves it. The staff know exactly what they're doing and his communication and language has noticibly improved already. He gets escorted transport, there and back, paid for by the LEA and has been there half day, five days a week without a hitch from day one.

I really can't stress enough that you need to bypass the school in this. Not the fault of the school, but it's LEA policy to ignore and fob them off. You have the right to ask for a assessment of SEN to be done and they have to respond. As your daughter has a diagnosis they cannot tell you she doesn't need one (this doesn't mean they won't say that, it just means you have the right to threaten them with legal action if they do). If you do request one I reccommend stressing how disruptive her behaviour is to the other pupils (whether it is or isn't) as this is one of the "magic" phrases outlined in the SEN code of practice. If you're not feeling up to taking on the LEA direct I think it might be a good idea to contact your local Portage service (http://www.portage.org.uk/). As your daughter is in nursery they may decide she doesn't qualify - depends on the individual service - but really what you're after here is a way in to your local special needs services and the people involved (the head of my LEAPS panel is also manager of the Portage service). Even if they can't offer you Portage services they're likely to be helpful about pointing you in the right direction.

And I do understand how hard it is - I think my son gets his ASD from my side of the family, I've always hated phoning people, talking to people etc, it's a major stress but I promise you, the relief I feel now that my son is settled and doing so well was worth every second of it. If it helps, use my catchphrase "That's not going to happen", that I had for dealing with other people trying to tell me what they were planning for my boy. It took their options away and it really did work.

Absolutely the best of luck to you and your daughter. Take heart and kick some butt!

Bod

Hi all,

Thank you for all your advice!

And so sorry I couldn't answer earlier. It has been just one big blur.

My daughter has somewhat settled in the mainstream pre-school. She started with staying there for half an hour every day, with me staying there with her at first, then leaving her for 5 minutes, then for 10 minutes the following week, etc. Last few days before the half-term she stayed there for 45 minutes on her own. It was very difficult for her at first, with regression episodes, bed-wetting, falling apart, etc. And got more stable now. But although all teachers say she's happy and cheerful, she's been increasingly trying to 'fix' things - try and do them (or make others do them) in a certain way in certain order, etc. So, I'm dreading the coming months, when the time of her stay is due to be increasing faster - first with 15 and then with 30 minutes every week. Besides, she's been getting very anxious, with intense emotional outbursts (focused on irrelevant things of course) whenever there was an unexpected thing happening in the pre-school. And so far the teachers haven't tried to get her do what they want her to do, they've just been letting her do whatever she chooses to. So, she's likely to be in for more pressure soon.

Anyway, on the subject...

Her school hasn't yet moved forward with the statementing. They've recently booked an educational psychologist for the end of November. And that's the earliest anything can be done (provided that the educational psychologist decides she needs a statement). And they haven't been setting many targets on her educational plan either (just independent attendance of the nursery with increasing time of stay), because they say it's difficult to see what her difficulties are if she's only staying in the nursery for 30 minutes a day.

And I was also told that in addition to the school's SENCO I should try and speak to:

- Health visitor and/or GP and/or paediatrician

- Local team delivering the Early Bird program

- Local Early Support Coordinator

And ask them if they can do anything to help with the statementing using their own channels.

Well, it's good that so many different people may be able to help, but it would have been much easier if there was just one service that would oversee all of that, because some people know who turn to, some (like me) don't and end up sitting and waiting for help from the only source they are aware of. Just frustrating, sorry!

I spoke to HV and she was the most helpful, with the educational psychologist's visit getting arranged only after her involvement.

We've seen a few other nurseries, both specialist and not. We didn't like the former because their approach was too radical and the latter refused us with a superficial excuse (i think they just didn't want to take on caring for my daughter being uncertain about their ability to do it well, which just confirms they are a good nursery indeed, but they could have been more honest and opened about it).

The main problem with the specialist nurseries in our area is that they require a statement. Besides, I don't drive, so can't look at the nurseries where we can't get by bus/train/on foot, which limits the choice as well.

There's just one more we haven't been to, so we'll see...

B Farkins, i really admire your attitude. And I wish all of us were strong enough to have the same one!

Keep it going...

My daughter attended a specialist nursery at first part time and then full time and it was the best thing we could have done for her and for me too - the support of the other parents and staff was invaluable.  A lot of the parents sent them to the mainstream pre-school and paid privately to go to specialist nursery provision whilst they were getting the statementing done. 

Hi OneBlackCat

Well, it's finally September and the fun is due to start next week. I have a meeting with the head from the school he was supposed to be going to, his CAHMS nurse and hopefully someone from the LEA.

I have been doing some more digging in the meantime tho and think you may find it useful to read the SEN Code of Practice which you can download here: (www.education.gov.uk/.../the-sen-code-of-practice). Chapter 4 (I think) is particulaly interesting. They can statement without the child being assessed in an educational setting despite what they tell you.

You may also find the Every Child Matters publication helpful: (www.education.gov.uk/.../2004 - it basically outlines how these agencies should work together and how they are not allowed to disregard previous reports, eg your daughter's diagnosis, and start a new assessment again from scratch.

I also had the opportunity to speak to a friend who is a SENCO (unfortunately in a different Local Authority). There is always the option of requesting your own statement, it doesn't have to be initiated by the school. In fact in the cases she's dealt with, it has often turned out that the parent led options have been resolved much faster. And worst case scenario  - there is always a funding pot somewhere for extra help, ask your school about Action and ActionPlus for support without a statement.

I know it sounds terribly cynical but it, like everything else, comes down to money. Any support for your daughter has to come from the school's budget unless she has a statement in which case it's the LEA's responsibility. Naturally, the school won't want her to cope as it makes it harder to get a statement, so her support continues to drain their budget, and the LEA needs your child to become a total nightmare before they'll issue a statement! Neither of those scenarios is going to help your daughter. You're the only one truly fighting her corner and you're going to have to fight tooth and nail, especially in the current budget squeeze. Hopefully those two documents should give you some ammunition.

Just don't take no for an answer!

Hi Bod,

Thank you for information!

Timing of diagnosis was rather unfortunate for both of us. And although staff are still around in pre-schools/schools now, but in those I spoke to they are not able to do much before September anyway.

I spoke to a very helpful lady from the NAS Education Advice Line and she concluded there were just three options for us:

1) ask mainstream pre-school to invite autism outreach team to come in to advise/etc (to try and make it less stressful for my daughter to cope in there) and start with the statementing there.

2) check some independent pre-schools.

3) request emergency placement in LEA-run special school.

I spoke to a couple of independent schools and in all cases we need to get back to them in September.

However, one useful bit of information we got from them was that we can arrange for someone (like a teaching assisstant) to come and stay/play/help with our daughter (because without extra funding provided by the statement they won't be able to give her enough one-on-one attention) and pay that person privately. Of course, they would be checked by the school, etc. But having such an opportunity gives more choice. Not sure if we can easily do the same in mainstream school. Maybe you could try asking about it in your school? If they can allow that, it may be of a help for your son while you are getting a statement for him.

Emergency placement sounds rather complicated, so I guess we'll try the easier ways first.

And thank you for your tip about assessment places. I'm sure I saw a note about that on website of one of the pre-schools around but I didn't quite know what it was about at the time. Will check it again.

Hi Black Cat

This all sounds horribly familiar! And you're right, there is next to no information about what to do with a preschooler with a diagnosis.

My son was diagnosed just over a month ago, just before all the schools broke up for the summer. I managed to speak to his headmistress, who was as helpful as she could be but it became fairly evident that they are now reluctant to take him as they wouldn't be able to get any support in place for him until long after he started.

If its any use to you, what I have found out is that there are such things as "assessment places", for which you don't need a statement as that's the whole point of going there. Your LEA should have one or two special schools which will take children and work to assess them over their nursery year, with regards to finding out if a mainstream setting with help is suitable or if a special school environment would be better and getting them a SEN statement. Unfortunately its not a short cut and the statementing process will still more than likely drag on for a year but at least if your child is in a special school to start with, it's likely to be less traumatic than a mainstream "suck it and see" approach.

Best advice I can offer is google the special schools in your area and approach them directly. I wouldn't try going to the SARS team first as their default position is "No".

Good luck and let me know if you find out anything useful!

Bod

Thank you Francesca!

There are loads of useful information on this site, so it's not always easy to know where to look for what you need (especially when you are overwhelmed by this whole new area of autism and related services and processes, as I currently am).

The question I still have after having read information about statement and education on the page you mentioned, is whether there's a way of getting statement without joining pre-school where my daughter is very likely to feel stressed all the time instead of learning anything, etc.

I've left a message on the Education Rights service, so hopefully will soon have it all answered.

And it's all additionally daunting because I myself have difficulties in communicating with people, so dread a need to be fighting and pushing and claiming, etc for my daughter. Although I will do it, whatever it takes...

Thank you very much for your help!

Dear OneBlackCat

I am sorry to hear of the difficulties you are facing with the school regarding a statement. More information about the statements and education can be found here:

http://www.autism.org.uk/living-with-autism/education/primary-and-secondary-school/extra-help-for-your-child-in-school/extra-help-in-school-england-and-wales/statements-of-special-educational-needs-england-wales.aspx

Services provided by the National Autistic Society may also help, you can read more here: