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Is it even worth it?

(32 Posts)
salondon Fri 19-Dec-14 16:19:12

Hi
I am totally questioning the whole point of having ABA on my daughter’s statement and attempting to have her in school. The sequence of events has been as follows:

Feb 2013 – We start ABA. 25 hours /week . 6 hours in a private nursery. We pay the tutor. 3y5mth old that time
Oct 2013 – We finally get the statement and nursery agree to use our tutor as 1-1 support. They pay the tutor 60% of what they claim(NI etc included). All along they make the life of the tutor very hard
Oct 2013 – We also appeal the statement since it doesn’t have ABA in there
Oct-Jan - I visit numerous local infants and primaries and they all said no to ABA. This particular school told me we don’t have ABA staff but if its on the statement we will support it.
Jan 2014 – We send our child in the nursery only when there is a tutor. Because she was getting out of hand for the nursery staff
Mar 2014 – Tribunal. Nursery give –ve evidence. HT of the school (local primary) comes. Hears the whole thing. The hearing is adjourned and we negotiate that they will hire our tutors for summer term and see how things go. We get ABA on statement. Support for 30 hours/week with 2+ yrs ABA experience…
Apr 2014 - They hire our tutors for 15 hours/week till July 2014
May 2014 – The SENCO, Class Teacher and HT call us for a meeting and say they aren't happy with the tutors.. We listen to their questions. Show them data sheets. Clarify things… Our BCBA goes in and clarifies things.. they advertise for ABA tutors – and guess what, they get 3 applications – all 3 are our current tutors..
Aug 2014 – They hire the 2 tutors for one term.
Sept 2014 – MiniSA starts reception… Settles well.. massive gap between her peers and her… But she is meeting the targets and her IEP.

Oct 2014 – There are a few tutor absences and we agree with SENCO to not send her since she cant cope.
We have the annual review and everyone agrees that the current strategies are working. Fiona even commented that “Such a well aligned meeting”
There is the issue of her being unsupported, having toilet accidents and crying a lot when the tutors go for an hour lunch. Its cut to 30 minutes and things go well. For those 30 minutes she is in the class, but no 1-1. We don’t make a fuss over this. Tutors are happy with the 30 min break.
I also meet the CT and she says she is pleased.. The tutors tell me there have been a few times when they aren't happy with ABA, but over all they are happy with the strategies. We have had 2 workshops in this term and no complaints were raised
Nov 2014 – The tutors follow up a few times and are told their contracts have been extended till July 2015. They are given the feedback that they should work with other kids alongside miniSA... They clarify that that miniSA needs 1-1 support and that they do take her out with 2-3 peers. No more feedback is given
Dec 2014 – They want us to send her in even when tutor isn't in. We agree that we will do so. I meet the CT and SENCO to wish xmas and they are happy. The CT even said to me (no I don’t have this in writing) – “Its only xmas and she is already doing so much. 9 times out of 10 she understands what is expected of her”

Yesterday, I went to meet the HT to wish her xmas. And she asks me so Mrs SA, how do to you think our first term. I say I think its gone well, what do you think… and then she stars off…

They are happy with the progress but not the support.. They don’t like the fact that the tutors communicate with me outside of school. They don’t like the fact that they are ‘outsiders’. They are concerned about the longevity of this solution

Funding is an issue.. I say to her let’s talk to the LEA about funding (It’s not even my problem). She wont be able to access year 1.. I say to her we are happy for her to repeat reception and we had always wanted a part home/part school placement. We know she is uber-delayed and that is why she needs more not less support.

ABA doesn’t work for them. I said, okay lets look for an ABA school – treetops. She says, oh that is out of borough – they wont agree… None of her business

She proposes moving her to a room where they have 2 severe ASD boys and use TEACHH. I say that isn't what we want. We would rather home educate her. I do all this tactfully, all along saying "ABA in mainstream has helped her achieve whatever she has done so far"

She goes on to say many kids who shouldn't be in this school, but are here only because of parental preference. She says miniSA has had a term in nursery and another in reception and its not working.(almost as if it’s a special discount she gave us)

Reading between the lines, they want control… They want our child to be taught in their ways. They will have an annual review in June 2015

We are spending £1K/month during term time just topping up the tutors (they are very good) and £2K/month out of term on the home program

Reading all this, if you managed to read this far, do you think it’s even worth it? How much would a special school placement cost the LEA? £15K/annum perhaps? Would they pay the tutors that money and we could run a home program and have her in school part time?
I just feel that we have spent time, money and effort trying to keep the school happy. We are fine if they go and hire the tutors themselves. The fact is, they aren't paying them enough and we have a very severely affected child here. The LSAs baby her…

fairgame Fri 19-Dec-14 17:41:44

I think you need to call an interim review of the statement. I don't understand why they are waiting until summer if everything is such an issue for them?
If you do decide to move miniSA then she needs to be doing transition in summer so the decision needs to be made a lot sooner.
If the school cannot have funding issues then they need to take this up with the LEA and not yourself.
The LEA will do whatever saves them the most money. I don't know how much Treetops would cost and i couldn't guess tbh. Judging by the price ranges quoted on here in the past there seems to be a huge variance in ss costs across boroughs.

Lesley25 Fri 19-Dec-14 19:01:00

Part of me thinks if they are prepared to wait till annual review in 2015 REGARDLESS of the HTs opinions - the amount of progress your dc is going to make between now and June 2015 could be tremendous.
It's a horrible situation to be in but growing a thick skin around "the schools" opinions might be something that gets you through till 2015.
If the school HT is that unhappy why didn't she call an early review? Why force their hand?
If you believe and the tutors believe the aba is positively helping your cd achieve her targets, I'd let the schools "opinions" wash off you.
It's poor practice but she's trying to manipulate you into believing it's not working, because it's a situation she cannot change without you doing it.
She may not like it (Ht) but if it's working, the difference in 6 months could be huge.

AgnesDiPesto Fri 19-Dec-14 19:52:35

Reading between the lines I'd say the HT plans to put 3 ASD kids together and just fund 1 or 2 TAs between them and the funding issue is that she doesn't want to pay this for one child.

Ds was in a school where the teachers didn't like outsiders, probably because they knew they were not doing their job for ds and were embarrassed how little they did/knew. In the end we moved ds to another school where staff were less defensive and more open. The 2nd school provides much higher levels 1:1 to all kids with Sen, every child with autism has FT 1:1 whichever approach they use and HT makes it plain to LA she will not take any kids with autism without FT 1:1 including lunches. The school can ask for extra funding for lunches and provide 1:1 (even if not ABA). Ds has non ABA staff for lunch. Before we got that we would just pick ds up for lunch and take him back in afternoon!

I would stick it out until review in June on basis ABA are making it work regardless of whether HT thinks it is, At review I would ask for a personal budget / direct payments so you can employ and control how tutors are funded and ask for the full rate. i might also look for another school for sept 2015.

Having 3 terms of data in mainstream is worth it. You have a legal right to mainstream and ultimately you can get eg EP to go in and observe and see it is working whatever HT says. If you end up at tribunal after next review you will have good evidence your ds is achieving well in mainstream.

The LA will not want her to repeat year. They will overrule HT on this.

Meanwhile I would keep a note of this post so you can refer back to it. Her issue isn't ABA it's that Sen kids are taking up too much funding and she doesn't have control - but that's because the Sen funding changes say schools must prioritise kids with statements and pay first £6k whereas HT used to be able to use that money freely. I think in review the LA will be unhappy if she takes this line about too many Sen kids etc. She can ask LA to top up her Sen funds if she feels she has more than her fair share.

If CT is in board just avoid HT. With last HT we just kept her out of meetings as much as possible as her attitude stank.

The tutors will win the CT over. They will start to appreciate how much easier they make the CT job, even if they never admit this to you.

Do you know the parents of the other 2 boys? I wouldnt be surprised if they are also getting pressure to pool / reduce their resources and it's nothing to do with ABA. You may find strength in numbers against HT if you all stand firm on 1:1 for each child. What lunch cover do these boys have? Potentially there is scope to pool resources at lunchtime.

zzzzz Fri 19-Dec-14 20:23:57

It's so hard to answer this one. What I can tell you is that ds has come further than he ever could have being HE. He's talking, really talking. smile

But even with that progress and the fact that we have been SO happy without all the crap/judgement/upset/fucking meetings, we are looking for SS. Mine is lonely at home. He LIKES people. On a good day I believe that's because I have done my job well and he has outgrown our set up. On a bad day I feel torn. Will we go back to the troubled anxious unhappy boy? Will I be able to get him "back" if we do? There is also the truth that I am tired. 24/7 care for 2 and a half years. No help from friends or family. Dh works long hours and I have 4 other children. Finances are stretched. Everything is stretched.

I think if you CAN make it work you should. You need to understand that the set up will be holding her back in some ways though.

salondon Fri 19-Dec-14 21:21:07

Thanks everyone. We will keep her there till July for sure. The CT is amazing and unless she is blatantly lying to me, she definitely likes the tutors.

The asd boys are 7 or 8. And had a babysitter. I saw no learning happening. They have many kids with asd.

She has aba support during lunch. Tutors take lunch after kids' lunch finishes. Simply so that our daughter is supported over lunch and in playground. Bless them. I feel so sorry for them as well.

I have looked at every possible school. I saw so many. They are all so vile towards aba sad

salondon Fri 19-Dec-14 21:22:51

Oh I forgot to say. HT said they only extended the tutor contracts in November for family, child and class continuity.

manishkmehta Fri 19-Dec-14 21:30:16

If you want part home part school and don't currenlty have it then you may need to appeal... However, if your child is already full time i can't see how you are going to win part home... That would look like a step backwards... i have several cases running at the moment where parents want ABA but part time home... However, it's not an easy thing to get...

If money is an issue... and you have ABA on the statement then you could let the school hire the ABA tutors... however, i can see what is coming... The moment they get tutors you don't know... you'll effectively lose control... Then the school can do what they want... which might not be ABA...

I'm not saying the school will do that... but there is a risk that if they hire the tutors you will lose all control...

AgnesDiPesto Fri 19-Dec-14 21:46:11

So HT wants to put your 4/5 year old girl in a class with two 7/8 year old boys.

And this is a suitable peer group because....?

Oh my goodness can you imagine a child without Sen being told to move to a class 2 years older to save money. I'm actually laughing thinking of some of the precious parents I know who have a hissy fit if their daughters aren't kept with all their friends from nursery.

I don't think you have to worry about this, unless the school is setting up a formal unit they can't move kids out of year like this without consent from you and the LA.

Just keep records and use it as evidence why you should be allowed control of the budget so you can ensure continuity / your child is allowed to stay in her class with her peers and not moved for purely financial reasons at whim of HT. You can request a personal budget and direct payments when you move over to EHC plan and LA must consider it and give reasons for refusing.

This is disability discrimination in my view moving her from her peer group. The HT may as well say all kids with autism are the same and can't learn so it doesn't matter which class they are in or what age they are.

I would say though that a HT like this does drag you down over time. I am so much less stressed now I have a helpful HT and not a harmful one to deal with.

Maybe you should set up a Sen coffee morning / night out and meet some of the other parents in my experience it won't just be you who has a hard time with this HT.

salondon Sat 20-Dec-14 05:44:31

Manish - that is why we have worked very hard to have our tutors in. If they end up not hiring people who I can 'control' on the side, I am certain they will prove aba isn't working within a term. However, I do know many families who run aba program with LSAs and in the end I might have to give in. I suppose I will have to hire them at home and train them tons

Agnes - my point exactly. All these things she said to me were very controversial and discriminatory. However, I want to pick my battles and I don't care what she thinks. So long as she allows my child access to other peers and aba

I have been thinking about the sen coffee morning. Do I ask the reception? I will be honest, I do worry that my daughter might be getting more support than anyone else (simply because I fought for it), and it will make me look really bad in front of other parents. Kwim?

I don't know where to find this elusive open minded HT. This one did say they want to try aba and see. Looks like they tried it and don't like it.

I am very seriously thinking of throwing the towel in in July and saying to them, do as you wish, give me the ££ and I won't send my daughter to school because it seems there is nothing suitable for her (because she can't have aba +mainstream anywhere and that I'd the only thing which has worked for her so far).

salondon Sat 20-Dec-14 05:49:10

zzz - I don't have any misconceptions that keeping her home when she is 6 (she is sept born and oldest in class), from year 1,isn't ideal. I just don't know where to send her.

zzzzz Sat 20-Dec-14 11:15:10

Ds came home at 7 having been in the year below his chronological age at my request. So summer term year 1. His language has blossomed in the two years he has been at home. He now understands most of the work he was supposed to have understood at school (so I would say he is still year 1 though a tutor says she thinks year 2 easily, perhaps because I only think it counts if he can do the work effortlessly).

We made a conscious decision that language came first, then behaviour, then academics. So though we do all three my focus to now has been his language. He can now ask and answer questions, use pronouns, use past and future tense, chat, tell jokes, understand movies. Some is developmental, some is having one voice and and one consistent way of teaching. He will always be able to make himself understood now. Tell what is wrong. It is worth everything.

Behaviour is next. He is not too bad anyway but needs to understand he is not in control. He needs practice with other people. It will be interesting to see how it goes.

salondon Sun 21-Dec-14 04:13:32

Makes sense zzz

I get so overwhelmed at the thought of doing all of this and keeping school happy

salondon Sun 21-Dec-14 05:08:50

I am generalising when I say this. I am feeling more and more that apart from a few exceptions, schools only like aba when the child is high functioning or its a private school.

Aside from that, for a child like mine, where you are looking at years and years of ££ expense, they don't want to bother. I just want her to get that intense input. Because that is what will help her if anything. Because right now, we aren't expecting anything from school. She does need a separate area few times a day for 1-1 and accesses their soft play etc. But it terms of people, it's only her tutors. I don't understand why is that a funding issue?

Oh I hate tribunals. They are so taxing

zzzzz Sun 21-Dec-14 10:00:51

What will make her happiest? Short, medium and long term.

What will make your family happiest? Short medium and long term?

Do that.

salondon Sun 21-Dec-14 14:00:12

Her =HT?

Pack off this 5 year old to the S'S

Our family - give her 30 hours/ week aba till she starts responding to the class teacher and lsa

You see they are poles apart!

zzzzz Sun 21-Dec-14 15:17:34

Not HT! Her happiness is beyond my control. No dd's?

salondon Sun 21-Dec-14 19:53:39

I can only guess zzz. But I get your question smile

Thanks

MostHighlyFlavouredLady Sun 21-Dec-14 20:38:38

salondon TBH I admire you.

I know you ought to get better provision and support and just general bloody help, and your continuous balancing act at fighting the demons that come your way, cope with your own devastation at your realisation that you actually can't prove ABA is what your child needs to these people because you and they have very different perceptions of what she needs (theirs based on her 'portion' of the budget compared to others with less pushy parents and at the expense of new books for the library, and yours based solely on her).

The continuous attempts to sabotage I have experienced, is the life of an ABA parent, as is the fear, not that something wonderful will be taken away, but that the child's ONLY chance will be taken away.

As such, you have to journey slowly. There is no eureka moment when all will realise the error of their ways and finally treat you with respect. You have to put that desire aside no matter how much of a difference that would make to your stress levels, your family life and your child. You have to plan for the now and the next few months and do what you can to protect it.

The ABA battle was too much for me. After a lost tribunal and quite substantial bullying that I couldn't deal with AS WELL as my child I had to take another course, and one that I believe has prevented my son from achieving what he could. The positive is that perhaps I now have the energy for his Home Education programme that I am undertaking not as a broken woman but a rested one.

Keep an open mind and bear in mind your essential mental well-being in it all, but also, keep any working resemblance of the ABA going for as long as you can. From someone that understand TOTALLY the situation you are in, I say again, I admire you.

salondon Mon 22-Dec-14 10:51:01

Thanks MostHighly smile

You are right.. The energy that goes in constantly making everything 'look' good vs focusing on your child is too much for me. I am certain that all she needs is 2-3 hours of intense 1-1 in ABA style and rest of the time if she can have someone who wont baby her and will tackle her behaviours she will do well.

I dont care she goes to a mainstream or SS or ABA school or stays home and never sees a peer for days.. I know right now she continues to need intensive input.

At the cost of an HLTA I was hoping the school will continue to meet me half way.. Looks like that is too much for them as well.

MostHighlyFlavouredLady Mon 22-Dec-14 19:27:48

Well good luck with the rest of your journey. smile The trouble is that so much of what you are asking for is down to such individual variables. The individuals you need to work with, their agendas, aims and influences, some of which might include your child but the majority of which will not.

You can't win them round by your performance alone, and to expect yourself to be able to remain convincing whilst humble to their profession without actually knowing the content of their meetings behind doors or the persuasive nature of the LA circulars, is asking far too much of yourself.

However, if you can try and ignore that and keep the ABA going regardless through delay, a bit of ego-pandering etc. then I reckon it is worth it.

I always kept in mind what my child would say as an adult if he looked back at my efforts and understood them. I have no need to hang my head in shame. I never gave up on him and still am not doing despite a necessary change of strategy.

sammythemummy Tue 23-Dec-14 08:01:47

These HT make my blood boil, all politics and absolutely no concern for the child's well being.

We've also has to make decisions to keep schools happy at the expense of (potentially) my daughter's progress.

But as you have a specified statement, I would try and dismiss HT's hints and carry on as you are an see what happens at AR.

It's all so stressful isn't it? I don't think I've ever been as stressed as when I was dealing with schools.

MeirAyaAlibi Tue 23-Dec-14 10:00:29

Devil's advocate here...

Could the HT simply be scared your dc is doing so well that she might have 58 dc with ASD (and no statements) apply for her next 60 reception places?

Or impressed with your dc's progress and want the same for the other two boys who are going nowhere fast (without spending anything extra, of course)?

MeirAyaAlibi Tue 23-Dec-14 10:01:54

And the coffee morning- I'd go a for a night out (or a quick coffee off school premises). Networking under the beady eye of your adversary never goes well

salondon Tue 23-Dec-14 10:47:16

Sammy - I agree.. She stresses me like a mother-in-law!

Alibi - No, if she was impressed with the progress, she would continue to have the fab tutors in the class... Her issue is the tutors are paid HLTA rate and only work with one severely delayed ASD child

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