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Viewed a Indi ASD school today, feeling sad

26 replies

2boysnamedR · 29/06/2015 23:23

I feel so sad for my son. I'm scared for him and us as a family. I was told today that parents remortgage their home to get barristers to get their kids into this school. A school where no child ever gets to gcse level.

I'm terrified about what the future holds for us. He's three. It feels like he's screwed already.

Seeing boys over six foot really hit home. I keep saying I'm not in denial but I'd rather be.

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adrianna22 · 29/06/2015 23:42

What's up 2boys? Are you sad about the low expectations of this school?

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2boysnamedR · 30/06/2015 00:13

I'm sad because it seems all the asd schools don't seem to cater for academia. He's just three, how can I know if he will be able to get grades?

I feel that he needs special schooling but at the same time that's going to stop him living a independant life. He's buggered either way.

It's learn to communicate Is at the cost of a education but unless he communicates his got no future

I'm feeling like why the hell am i appealing contents if his brothers statement when at least the older boy has a chance at life. Feels like my younger boy has nothing to fight for. It's over before he even starts school.

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MairOldAlibi · 30/06/2015 00:35

2boys it's just grief. It'll pass. Your current job isn't to pick his school for ages 3-19y. It's to see which school will give him most progress from age 3-6y. So he has reasonable foundation skills that may let him follow the national curriculum later.

This is the a goose in the hand is worth a whole bunch of carrots in the bush theory. His subsequent plan can change- many times.

You've read 'send in the idiots'? Not a bad advert for a few years in SS then a switch to MS.

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2boysnamedR · 30/06/2015 00:46

I should be happy as I know going from ss to mainstream is easy compaired to going the other way.

It's all so daunting. Making choices I don't feel equipped to make

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Elisabennet · 30/06/2015 12:46

Do you know about ABA and would you consider it? One of the pros is that all of the needs are covered including academia (I say one of because for us it has been v good).
I agree with Mair, if your child is only three, focus on short term, not long term.

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Icimoi · 30/06/2015 12:51

Really, no-one needs second mortgages for lawyers. There are a couple of really expensive solicitors' firms that charge a fortune, but their success rate is no better than other good firms that charge reasonable fees, e.g. Maxwell Gillott. And, as this website confirms, lots of parents achieve brilliant tribunal results without lawyers at all, or just with volunteer representatives and help.

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amunt · 30/06/2015 13:52

"it's just grief. It'll pass."

Thank you for that MairOldAlibi. We're in a similar position to 2boysnamedR, except he's about to start mainstream, which we're pretty sure will be unsuccessful. Our days our consumed by anxiety about the future and general uncertainty. It does feel like grief, and it's reassuring to hear you say it will pass.

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Miggsie · 30/06/2015 14:01

ASD children have very different outcomes based on the severity of the social/emotional difficulties and IQ.

One friend has and ASD boy who has an IQ of about 75 and a mental age of 5 when he in fact 12. He is in a special school that does ABA, paid for by the LEA (after a tribunal where parents represented themselves)

Another friend has a boy with an IQ of 140 but high verbal and social impairment, he's in mainstream with a lot of adjustments, he does have problems due to his emotional immaturity, he passes exams fine.

Another friend has an ASD savant in mainstream but are considering putting him in a special school for HFA boys because the school is increasingly unable to cater to his massive intellectual ability or to his social problems.

So there's such a spectrum of emotional and intellectual mixtures with ASD you can't say there is only one path at 3 years old. It really depends what the issues are for your particular boy.

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2boysnamedR · 30/06/2015 16:37

The school I looked at was a ABA school. It's a ratio of 1:1 so it's sad to see even with such massive investment the future was still very bleak for these kids.

I think im just going to see what his asd state place does for him. I have quite a few schools to look around for him starting reception in 2016.

It's just the irony of fighting to get my older boy out of MS I'd rip my arm off to be in that position for my toddler.

Makes my tribunal for the other boy feel like a pointless joke now.

Just yet another hard week. Each blow never gets easier to take. My outer shell gets harder, inside it still kills me.

Got mil here soon from abroad. If I hear once more that he's not got asd, the older boy is fine I might just divorce dh so I can just crack on with reality.

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MairOldAlibi · 30/06/2015 17:17

2boys the outcomes can be crap, but already you know it's notoriously difficult to predict anything at 3y. So much depends on how language goes in the next few years. Of course this might prove a false hope- but even those tend to improve outcomes (think placebo effect, and the initially amazing results from most 'new' treatments)

Got mil here soon from abroad
Good grief Flowers Is she staying long?

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MairOldAlibi · 30/06/2015 17:19

I'm now treating ds1 battles and stresses as training exercises for ds2

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adrianna22 · 30/06/2015 17:55

Hi 2boys I see. I don't know what ABA school you viewed, but when I went to visit an ABA school, the headteacher strongly and I mean strongly recommend to us that if a child seems high functioning on the autistic spectrum, this would not be the right place for them.

Maybe part of the issue is that you have't found the right school for your DS to go to. I looked at 20 special schools and only two of those schools were the right fit for DS. But I remember the feeling you had when I viewed certain special schools.. the expectations of the students were lower, the older kids didn't seem to be improving as much or gotten worse actually (but who am I to tell).

But when you find that school, and you will, and you get that positive gut feeling about it. All you worries will disappear, trust me. No school is perfect and I don't think the special school, that DS is going to, put emphasis on academics. But If that's the case, I've decided that I'm going to work extra on academics with DS at home, I also have a friend who is a teacher so she can assist me. You can be the smartest person in the world, but if you can't communicate, then it's a waste. DS will be going to a school where the therapist and TA's are highly trained, he will be getting the appropriate support and like another poster had said, don't think of your DS in the future, think now. If you find that your DS is doing really well communication wise and is very academic in years to come, you can always move him back to mainstream or into another specialist school that is very academic.

Plus no, you don't need to spend thousands on a barrister. I did spend lots on reports and for the witnesses to come to tribunal. But a charity represented me and I won. So don't let that put you off.

You will find that school OP, even if you have to look out of borough, you will find it.

Good luck.

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2boysnamedR · 30/06/2015 17:57

No thank god MIL is here for three days as we have a three bed semi and four kids crammed in - she will do a grand tour of relatives.

Bil wife had a nephew with asd who was bed bound and died at 8 so I'm told "things are different over there" not sure what that means. Not sure I want to know. However as my boys are her blood line they are, of course geniuses.

So it's the normal posting autisum awareness things on FB while not being aware of ASD right under her nose.

I'm trying pecs and makaton with the little bugger. He can do. I just don't know if I can unlock his will to do it.

I do admire his "stuff what you want mum" attitude, but at the same time it's hard to live with.

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StarlightMcKenzee · 30/06/2015 17:58

I'm increasingly convinced that outcomes have a lot to do with parental resources. That places a huge burden on your shoulders but also hope.

When I say 'resources' I don't mean financial, necessarily. SN MNers I believe sincerely with my heart, get better outcomes for their kids.

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MairOldAlibi · 30/06/2015 18:30

I'm trying pecs and makaton with the little bugger. He can do. I just don't know if I can unlock his will to do it.
He sounds ace Grin
That's the really annoying thing about untapped ASD potential. When a dc's puzzle-solving, pattern-spotting and singleminded-ness are turned to defeating mum in the great game of 'I won't learn and you can't make me' it's a real sod to crack.

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Elisabennet · 30/06/2015 18:47

Usually with ABA programs should be individual, so academics should be covered if right. And even if not in the first instance, it doesn't mean never, it just means not a priority right now. Only talking from my perspective obviously, I have never visited an ABA school, just home based experience.
I have visited many SEN schools however where I just new it wasn't right, the potential would never be unearthed.

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2boysnamedR · 30/06/2015 18:56

I did think about throttling him into submission earlier at a sure start class we do. I was playing in the sand, painting with water and setting up fish in the water play while he ignored me.

He then does something unexpected like sign for a snack and everyone is amazed while I know he's never going to repeat it.

I keep " if you would just talk a bit I could crack you enough just to step a little bit into my world" but of course his world is nicer so why would he. Unless I'm not paying him attention - where he suddenly needs me to do something. I want to have hope. I want to hope he's talking by 16, that he could sit a exam, that we can have a relationship with him.

What I really hope is that he will think one day, I going to try that it looks like fun. He will do amazing things for his 11 year old brother. So it's just repeating it again.

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MairOldAlibi · 30/06/2015 20:05

He will do amazing things for his 11 year old brother

Shame the system couldn't put him in a year 6 class with an ABA 1-1

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2boysnamedR · 30/06/2015 21:01

Yes, his brother is only person he has a desire to please

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pastizzi · 01/07/2015 12:31

Ds has been at an ABA since the age of 4 and he is doing academics! I also wouldn't say the future is necessarily 'bleak' for any of the kids there. They are happy and fulfilled, reaching their potential, which isn't 'bleak'!

I went round to view the school when ds was 3 and it was very upsetting seeing all the older children there. But only because seeing ANY older kids with ASD was upsetting at that stage. Ds seemed like such a baby, not 'massively' ASD, and we did wobble re putting him in a special school at such an early age.

But I knew for him the alternatives would have been catastrophic. He was in no way capable of keeping up in mainstream, and he would been wasting time every hour that he was there.


With the ABA school I knew he would reach his absolute potential, working to a completely individualised curriculum. And tbh I have always placed a much higher premium on speech/ communication than anything else, as I feel that will be what affects his life chances the most. He is never realistically going to need to know know how to do algebra.

And kids HAVE moved to other schools from where he is now. The staff really do want children to move on to somewhere more appropriate if they no longer need 1:1 or need different peers/ different learning environments.

Think of what would be best for your son for right now. Too much of a gamble to do anything else.

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LL12 · 06/07/2015 14:16

As others have said, it is grief and it will pass in time.
The first time I went to see a special school I got back in the car and cried like a baby. The worries, fear, reality and just about every emotion just hit like a rock. Over time I found as the grief and shock passed, I was able to focus more and it gave me a lot of strength to think "Right, that's it, what's best for my child right now and how am I going to get it".
Remember, one step at a time. Look at getting the best for him how he is now.
Good luck

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2boysnamedR · 06/07/2015 16:48

Thanks. In reality I know that GCSEs are useless if he's never going to talk. I'm just shocked that such massive intensive 1:1 ABA doesn't yield better outcomes.

I'd be happy with a socially in empt but happy child who could tell me he wants to drink / eat / poop. Even that right now seems like too much to ask.

It's the shock of viewing the school. Normally I'm thinking, will this place bring out my child's amazing IQ, musical talents etc ( but that was another world away, another life for my eldest son). Who is btw far more irritating than both of my SEN boys put together.

The urge to either get in the car and drive off never to be seen again or stand in the garden and scream "why me, why my kids!" Are in equal play this month.

More tribunal stress. More LA lying crap and now doing it all again but 100% worse as at least ds2 made it into MS where as the toddler isn't fit for MS. In my LA that some scary prospect.

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MairOldAlibi · 06/07/2015 20:33

toddler isn't fit for MS
Nope. MS isn't fit for your precious toddler...

Sometimes insisting on full-time, unsuitable MS is the only way to get expert individual support- though it only works if the MS would otherwise face sufficient trouble and expense to justify them fighting with the LA. But MS + lots might show a tribunal what good value the indie SS is...

The right to adequate education within a mainstream setting is pretty absolute. Law says it covers pretty much anything bar direct harm to other children. And that harm only applies if no amount of resources could fix the problem. For example, one LA was almost made build a dc his own fully staffed little school-within-a-school, populating it with bussed-in, suitably-similar peers so the dc's needs would be met in mainstream.

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MairOldAlibi · 06/07/2015 20:38

So. You want ds to be able to tell me he wants to drink / eat / poop

That is absolutely and definitely a realistic goal to have right now, well before he gets to school. (well, maybe not the poop yet...)

How do you currently know when he wants a drink/snack?

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2boysnamedR · 07/07/2015 14:12

We're are trying makaton and pecs. He can sign for milk ( which is a almost every 15 minute demand now he's mastered it!) the food bit is harder. I have to guess when he's grumpy then sign for eat which he might nod to but I think sometimes he wanted something else then thinks " oh food! Yes why not" as it was a better offer than what he was really after.

So to be fair we are getting there. But he's lost these skills before, I'm trying to not my hopes to high.

It's bridging up the fact he wants to communicate, I have heard him talk, sign, use pecs and getting some consistency.

He even let me sit him on the loo after a bath and stand him in the bathroom while he pooped in his nappy.

I think I'm emotionally exhasted. Again! It seems to come in waves. If the waves are to close close together I get knocked off my feet.

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