New person seeking advice please

[hoymoon]

Hello all, i have never used a forum like this but i have been reading some of the posts and found them useful, I don't really have any contact with other special needs parents and I could really do with some advice please

My daughter has just turned 3, she has had severe epilepsy from 6 months but since starting a new drug a few months ago she has had much better control. I have always known her development is delayed but I am really struggling to get any support with this. The only people she has seen is the epilepsy nurse and I have finally (after a 2 year wait) been referred for speech therapy appointment.

I think at the moment she is about a year behind, she lacks concentration, she is always jumping up down, she is beautifully happy, always smiling and and very sociable but her understanding is very chaotic and her language is behind.

I would like to know where do i go from here? My local SEN support worker has been useless, should someone assess my daughter and who does that? She is meant to start school next year (September 2014) and I don't know how to get a statement for her. Ideally i would like to keep her back a year, as she will be one of the youngest in the class but i understand that this is very difficult and i can't find any information about how to do it. Has anyone kept their child back a year and started in reception age 6 and if so how did they do it?????

Thanks for reading sorry it's so long

x

You need to go to your gp and ask to be referred to your community / developmental paediatrician. Statements and keeping them back a very are not easy to get so do this ASAP

Hi Hoymoon, I agree with 2boys advice. The only thing I would ad is don't allow the GP to fob you off with trying to explain it all as linked to her epilepsy. It may well be but she will need a full assessment of her abilities before you can plan schooling etc.
Good luck

Does she see a paed Neurologist? If so they may be able to refer you to a developmental paed.

Thanks everyone, yes she does see a neurologist but very rarely and he is impossible to contact so we mainly go through epilepsy nurse. I know in the past they delayed referring me for speech therapy as they said it was epilespy related. I did ask the useless SEN support worker for a community paediatrician referal, but it has been months and I still haven't heard anything, I will chase them up. To be honest I am unsure as to what a community paediatrician does, will other referrals and statement come through this?? I find it so shocking how it is down to the parents to ask for this kind of support, when there is a recognised problem i just presumed she would be automatically assessed but clearly not! Many thanks for your help x

sorry posted under special needs chat. we have a DD with complex epilepsy (she had it from 4 months and is now 4 years)

Unfortunately when your child has special needs you are the advocate and you need to push as hard as you can. Unless you ask you will not be told I'm afraid was our experience.

We asked for the developmental referral for DD when she was 16 months old but when we got the hospital records her consultant had written down that we were in denial! WTF! We had pushed him!

Anyway in the beginning they put everything done to the seizures but 4 years later we now know DD has Microcephaly so don't get fobbed off or ignored.

Hope you get some answers and by the way our DD community paed was one of the most influential and important people that DD had in first 2 years of her life, she opened the door for therapies and statements etc

Hi, if I were you I would write down a list of all your concerns (with examples and frequency) and take this list to your GP and demand to be referred to the community paed.

With regards to getting assessed for a statement, you can apply yourself and the IPSEA website would be a good place to start.

You don't mention whether your DD is at nursery but she doesn't legally have to start school until the term she has turned 5 do September 2015 in your case I think. But if you do delay her starting they may try to insist that she goes straight into year one and misses reception. It is possible to delay entry so that she is held back a year but you will need a good argument and preferably some professional support. If she is a summer baby then that will help your case as she will only just have turned 5. The premature baby website 'bliss' has some useful info on this that may help you.

Good luck

Thank you so much everyone, i already feel more informed, it seems like community paed is the starting point so I will chase it up tomorrow. I will have a look at IPSEA and Bliss and start researching Thanks lots x