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Here are some suggested organisations that offer expert advice on SN.

I am now mum to 3 children with ASD

(26 Posts)
bjkmummy Wed 09-Jul-14 07:04:06

that's all of my children dx with ASD. my daughter who is 10 was dx yesterday - feels like ive been punched in the stomach if im honest - this is the child I have been in denial about, didn't want to have aSD and it physically hurts at the moment to know that she is - I think it hurts because part of me feels ive let her down by not doing something similar but shes presented as a typical girl and has learnt to hide.

the specialist went into school yesterday and spent a long time with her - what she then told me she saw has absolutely broken me but we are stuck as we go through this awful process of statementing - thankfully they finish on Friday for summer - she will need specialist schooling but as she also has dyslexia will mean she needs a dyslexia school and likely she will need to board as no schools anywhere near here.

my LA are going to have a hissy fit when they find out but the tribunal ordered them to fully assess her which they have failed to do as they also probably didn't want to find out she has ASD.

the specialist spent a long time at home with her and explained HFA to her - after she left I asked my daughter what she said to her and my daughter who has the worst working memory ever has already forgotten what she was told so she is still in her bubble. I know she is still my fabulous daughter and she is amazing but my god, I feel the worse mum ever sending her into a school who have no idea whatsoever about her - the teacher is still bleating about how she wont be statemented if shes not 6 years behind!!! thankfully the specialist put her straight on that one but not sure again how much she will listen as the tribunal judge told her straight as well!!

thank you for reading and listening and for holding my hand through all of this

sickofsocalledexperts Wed 09-Jul-14 08:13:18

That is a hard day. But if it's any comfort my DSD is or was hfa and is now off to Uni , has a boyfriend, travels everywhere , will get a job, will live pretty a life much like her nf sisters. There are good outcomes at the hf side

OneInEight Wed 09-Jul-14 09:20:15

Well school & class teacher has a lot more to feel guilty about than you. I hope the diagnosis, however painful at the moment, will finally get your daughter the support she needs. You must be exhausted fighting with the SEN team three times over - we are suffering from battle fatigue with just two & having had much less of a fight than they are putting you through.

bjkmummy Wed 09-Jul-14 10:51:41

3 days left to the end of term then I'm going to enjoy the summer. We won't know the outcome of statementing until towards the end of August so going to forget about it all and spend my time with the kids camping and building sandcastles. Battle armour will be dusted off for September and battle will recommend then but I'm offically now giving myself the summer off so that I can recharge myself and get ready for tribunal number 3.

2boysnamedR Wed 09-Jul-14 11:44:42

Cricky. Sorry to hear it wasn't the 'shes fine' news we hope to hear but inside know were not going to. I might be joining that club soon when baby is born and it's tested for the duplication my DS has.

It's always hard to hear. It can never be easy unless your devoid of emotion. Your a great mum and only doing the very best for her. Now she can get that help she needs to grow into a wonderful happy young woman.

You went private for the test? I might have to join you on that one for DS tribunal.

Schoolsoutforsummer Wed 09-Jul-14 12:11:45

bjk - I have lost count of the times the reports for Tribunal made me cry and feel awful about not having seen some of the stuff my boys have.

Well done your DD for holding her life together - long-term that is an ability and a half. I am sure that is why less girls are diagnosed. Have you had a look at the girl with the curly hair project?

You don't have to send her away - you can accept a compromise because of her age. Dyslexia support can be bought in; there are tutors available around the country and financially, it might be cheaper i.e. boarding plus transport to and from school is incredibly expensive. The solicitor wanted me to consider boarding school for DS2 but emotionally, it would have been the wrong thing. He goes to school with DS1 and it isn't the perfect fit for him but is adequate and I try to supplement i.e. CBT when necessary. To immediately contradict myself, there are some amazing special schools out there that might be life-transforming and worth considering.

Keep going. Hope you have a wonderful summer and Tribunal doesn't overcast it too much.

Ineedmorepatience Wed 09-Jul-14 12:23:55

Sorry to hear your news bjk but at least now you know and you can move forward.

Be kind to yourself and have an awesome summer (smile]

bjkmummy Wed 09-Jul-14 12:29:26

She won't cope in a mainstream secondary school due to the noise , class sizes etc, her dyslexia really affects her academically and she in year 5 is on NC levels 2. If she has been born a week earlier she would be heading for secondary in sept. We have no specialist teaching service here, we have no special schools either , all schools are academies and none of them want her or seem even willing to give it a go by buying stuff in so its with a heavy heart that we've come to realise that it will have to be boarding. Thankfully dyslexia boarding schools are not as expensive as the asd specific ones and I will offer to transport her to keep the costs down. I'm hoping secondary schooling in a specialist school will get her in track, help her to learn and then hopefully return home for college. That's my plan but now to got to see how it works in reality. She would be 12 by the time she would hit boarding school and I think for her she would enjoy it and benefit from it as well

bjkmummy Wed 09-Jul-14 12:31:26

If anyone knows of any really good dyslexia schools that also have some kids with aspergers in , please let me know. I can't seem to get last shapwick or appleford so far but thinking must be others out there as well.

billiejeanbob Wed 09-Jul-14 12:51:44

Hi BJK - have been thinking of you yesterday. sorry to hear about the dx, but at least now u know that u arent imagining your dd's needs.
I have a list here of indie specialist schools. I was looking through them last night and there are a few schools that cater for asd and dyslexia. I will have a look through the list and let you know their names and locations.
Do you if her primary need is the asd or dyslexia? or are both equally affecting her educationally?

2boysnamedR Wed 09-Jul-14 12:58:30

Not sure where you are but there is good dyslexia school in Hampshire on the Surrey border. I don't know it personally but I know friends who wanted to self fund so must be good?

eatyourveg Wed 09-Jul-14 13:00:45

Any of these? Tick the Aspergers box to refine the search

billiejeanbob Wed 09-Jul-14 13:15:48

ok here is the list of schools that specialise in asd and specific learning difficulty -
St Dominics School in Surrey (asd, SpLD, SLT)
Browns School in Bromley
Frewen College in East Sussex (SpLD, aspergers)
Lawrence House School in Knowsley (SpLD, SLT, ASD, BESD)
LVS Hassocks in West Sussex (aspergers, SpLD)
Pontville Residential School in Lancashire (Asd, SLT, SpLD)
Trinity school in Medway (SpLD, ASD)
The Holmewood school London in Barnet (SpLD, ASD, SLT, ADHD)

bjkmummy Wed 09-Jul-14 13:18:16

Her primary need is dyslexia as that impacts on her educationally - there will need to be SALT on site as well. There is no where near me so I'm going to have to travel wherever she goes. We are in the midlands. I need I think to visit them come sept though how I'm going to manage it I don't know but will cross that bridge when I get to it. Can always hire a car I guess

bjkmummy Wed 09-Jul-14 13:29:13

Frewen have an open day in sept on a Saturday which could be useful so will book in for that one, slowly going down your list billie Jean ,
sept is going to be a crazy month as twins birthday, my birthday, need to go to London to see daphne keen , deffo going to enjoy my summer :-)

OneInEight Wed 09-Jul-14 13:50:48

If you're midlands try Maple Hayes - near Lichfield I think - specialises in dyslexia but some also with ASD.

OneInEight Wed 09-Jul-14 13:54:07

New Elizabethan (near Kidderminster) also has quite a few children with dyslexia as well as others with ASD or ADHD. They have just been taken over by Cambian group.

KeepOnKeepingOn1 Wed 09-Jul-14 13:55:03

DS1 is at Frewen. They have salt and OT on site. Ask any questions you like. smile

KeepOnKeepingOn1 Wed 09-Jul-14 14:00:04

If you win OOC at tribunal or LA agree to it then funding is automatically provided for boarding and transport costs. It is actually better for DS1 to have 2 2 hour journeys per week than 10 45 minute journeys. Plus the boarding means a huge reduction in transitions in sensory environment. The downside bit is the actual boarding.

bjkmummy Wed 09-Jul-14 14:34:46

That's good to know keep, had the email from them so we are all booked in to see them. It's 175 miles away! So going to be a long day I think. Maple Hayes is a day school only so too far to travel as a day pupil.

Schoolsoutforsummer Thu 10-Jul-14 13:39:58

Dawn House Nottingham - they don't have dyslexia provision but when asked at Tribunal (for a friend's son) they were happy to buy it in at no extra cost. It is an ICAN school and pretty wonderful as a consequence.

SchoolHolsTOWIE Thu 10-Jul-14 15:51:40

Sorry to hear this but at least now you know and can get her the right help. Each diagnosis is absolutely heart breaking - especially finding out whilst fighting this morally corrupt system of Statementing and fighting an awful LA

For a good dyslexia/ASD school, take a look at CA in Suffolk. There's several mums on this board with children there. DS (dyslexia/dyspraxia/adhd/apd/ anxiety/S&L - but primary dx dyslexia) has been a day pupil for the last year and it has given him back his life. I am astounded at how things have changed for him in the last year - a long way to go but he is finally making progress and at home is a changed child. When he started, he was adamant that he wasn't going to board but at the end of last month decided he wants to. So will be boarding very soon. There's a mix of needs at the school.

DD is still your little girl and you are incredible mum to your 3.

MeirEyaNewAlibi Thu 10-Jul-14 21:29:56

Lots of the indie dyslexia SS follow the private school 'weds pm is for sports' tradition. And modern private prep schools seem to be into flexi-boarding. If (admittedly a big if) you find a suitable dyslexia-friendly school, not too far away, and they'll accept flexi.... the LA would surely like to save £. And even if they don't, tribunal would.

To my completely unsporting and state school mind, that would mean you could try for a 4 day week. School mon-sleep-tue (weds at home) school thurs-sleep-fri. weds at home doing the ASD stuff yourself.

You're able to offer far more useful asd input than most so called experts. You've been doing it all along, but without realising. And it's only now that she's crashed, & that only cos school missed the dyslexia & other needs.

With you she'd get a full day of targeted 1-1 daytime. Only 2 nights boarding. Plus 2 evenings & all holidays & weekends in small group real-world ASD intervention (3 mixed age siblings children at home in a range of community & domestic settings)

alwaysrushing Mon 08-Dec-14 20:59:18

Crashing this 6 months late but wondered how you got on? Am looking at shapwick very seriously for my dd but my son who is hf asd is at mark college down the road and it's brilliant. Also specialises in dyslexia... Let me know. Felt for you.

bjkmummy Mon 08-Dec-14 22:11:48

to cut a long story short im still fighting for a statement so not got any further re school placement as I need to ensure I get the statement first - re shapwick - I had heard good things about it but it has recently also just had an Ofsted report done. I have looked at one school which I really liked and that will be the fight for next year I think to get her in there once ive secured the statement

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