exhausted and have not even filled in EHC form yet...how does everyone do this?

[bubblewrapandwine]

I know so many are in much worse situations and I should be coping better but i just don't how everyone does it? tell me how you got support for your kids.

Having fought for years to get a diagnosis (paying for private assessments myself and stamping my feet at GPs until we got a referral (and knowing things where not right for many before that) I am exhausted. I have now been advised DS has a rare condition, significant needs, is in the 1st percentile and will need high levels of specialized support, DS has normal IQ so is very aware of the difficulties and is hating school at the moment. The school and SENCO are in denial and often tells DS off for not keeping up when he can't help it. No official support at school. They ignore reports and letters. Local Ed pys refused to see him. Consultant says I should get a EHP (all children with this condition do) and I will try to get DS to a mainstream but specialised school with very small classes and willingness to help rather ignore the problem and treat him as naughty. DS will have life long problems and things are likely to become harder/ more noticeable. I can't imagine it being harder!

From what I've read the EHC plan is a fight that can be expensive and go on for years. I am yet to find an ideal school locally, consultant has suggest schools but are private specialised and in other counties I can not see anything similar near us. I am gearing up for another fight but the thought of another month of this let alone a year really scares me.

I have spoke to parent partnership who where very nice and supportive, they gave me the EHC plan to complete but have also suggested that we would struggle to get EHC Plan in our county or specialised school and instead suggested a local mainstream school, one of worst schools in my area and has booked me apt with the SENCO. They have slightly smaller classes because they are under subscribed, no one wants their kids to go there. There are lots of behavioral difficulties and I still know that it will not have enough support. Maybe if they have TA with DS in most if not all lessons but i would know DS would hate feeling more different than he already is. I honestly feel he would be better to stay at home with me.

How did everyone else get through this? :(

Parent Partnership can sometimes manage to be independent of the LA staff that they are sitting next to in their LA offices, but often are not.

My thought would be to look at all the schools your indep expert suggested to get your eye in, and then look at anything vaguely possible nearby. The go with your gut instinct as it has done you proud so far.

The main thing to think about is the evidence (including your own observations) of:-
a) things dc will have to be taught that other children pick up pretty easily at home- so some ASD/C kids have to be taught communication skills, some Downs kids have to be taught how to run or hop.

b) the things that dc will find unusually hard to do in the classroom or in a PE or drama lesson.

With anything on the list you are thinking about two options:-

1. how do we change the environment so that dc can learn more easily eg for a child who is easily distracted by lots of bright pictures on the walls, let's take the pictures down, for a child who finds walking up and down stairs, lets move the class to a ground floor classroom.

2. what therapy can we give dc to make him less sensitive to pictures, or what physio can we give ds to make legs stronger and balance better so that stairs are less hazardous.

Once you have that list, do a mental check - is there anything that you have been tempted to regard as medical, which is in fact educational bearing in mind that the definition of special educational need includes a disability which requires education not normally provided in a mainstream class.

Just because the NHS do physio or Speech Therapy or Occupational Therapy doesn't make it medical. Assume everything is educational for now except the actual pharmaceuticals.

Obviously, it would be great if you have evidence from experts that help you through this - Ed Psychs, Speech and Language Therapist, Occupational Therapist, Physiotherapist, whatever is right by your dc. But plenty of parents win a lot of what their dcs need without having to go all the way to Tribunal.

Hope this helps

Well I'm not going to tell you it's easy, far from it. I'm still wondering if the fight has been worth it for us so far.

You need two things I think to appeal. Be 90% sure your right. Your child needs more, there's more going on than school want to see.

A belief they deserve better.

The rest you muddle through. Unless your sure they need more than they are getting you will doubt yourself and give up. You don't need £1000's to win a appeal. ( it helps!) what wins is evidence and nerves of steel ( in my case born of anger )

I don't think I would ever advise that appeal is the easy option. It's not easy. It's something you do when your on the edge of cliff. 100ft drop to certain destruction below, a pack of wolves ready to rip you apart ahead.

People do fight back and win. You do it one step at a time.

Just adding my tuppence worth to the good advice of others who have posted. Our son has a statement (to be updated in due course to new ehc) he is fully funded in an idie specialist school. Both of which were things we were told we stood little chance in achieving. It is possible!! Our first step was to view schools, get an idea of what's out there. Talk to the schools as often they have a lot of experience of how others have got a place at their school. You will need as many people on side as possible. We got what we were hoping for but our point of bargaining was transport. The school is twenty miles away and we arrange this. Cost as well as provision does come into it but so does parental choice. You will need those nerves of steel and you will need evidence and facts.

Don't believe it when people say "you will never get xyz"

I was told I'd never get a diagnosis or statement by my sons senco. So I'm just a big standard mum. I got both. Took on my LA and won. Shows what she knew, and that's her job to know ;0)

Bog standard mum I mean. I am nothing special.

I think you're better off with advice from one of the independent charities rather than parent partnership. If you're in the South, look into going to one of SOS SEN's workshops on EHC plans and appeals, they're very helpful.

Thank you everyone, as for evidence what kind of thing do you suggest?

The condition is rare. Only a few kids in the uk and ability/ circumstance varies in each. I have a consultant from a well known children's hospital and also an Ed psy from that hospital as well but that's it. They are backing me for a statement and specialist school and are very supportive but I am not sure there are any other specialist I can get evidence from as it's rare and all children are sent to this specialist, there's not a great deal of research etc. My child is pyshicaly able and as yet because the school, senco and local Ed psy service have refused to acknowledge the problem so I am not sure who get evedence from? On the other hand 'good luck' to the LA trying to find a anyone more qualified to dispute my evedence as I don't think there is anyone?

Any suggestions? What type of evedence did you have?

Sorry to. be vaige, didn't want too out myself :)

*appolgisies from grammar, I'm on a phone x

You can contact your local parent partnership (who are on the LA payroll) but they will give you advice on the information you will need to supply. Also have a look at some websites to give you an idea. Ipsea is great also SENSOS - they will help give you an idea of the process, what to expect and what evidence you need and how to get it. In our case, DS had a stroke as a baby so there's been a paper trail with various NHS referrals plus a record of school "failure" from an early stage.

Thank you bigbird69 I will check those out now

bubble it depends on the condition.

If dc has trouble with the physical things in a classroom and in life, then you can think about an OT.

If dc has sensory issues - eg shies away from noise or light, or struggles to respond to you calling his name in a small crowd, then it is OT again, but ideally with a sensory specialisation.

If your dc has trouble with vocabulary - ie just has fewer words than most kids. or doesn't read social cues so easily, then it is Speech and Language therapist - who will also cover speech things, like stutters etc

Physios are good too - they overlap a bit with OTs.

I think this is all I can say without an understanding of the things where dc might struggle to meet expectations.

Hope it helps