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Home educated 5yr son (ASD) ...its been recomended that he try autistic unit but im not convinced ...advice desperately needed..

17 replies

logi · 17/10/2009 14:43

Hi ive been HE my son for a year after he had a terrible 2 weeks of school,the school head was rude,unsupportive and i have lost all faith in schools...not that there was much left after other experiences with older dc.
We always new something was different about our son and finally someone listened to us and he is dx with autism/ASD.He was assessed in a "child assessment unit" which he is still attends 4 days a week 5 hours a day.
It took him a while to settle in here and he wasnt too bad but recently things have become worse and his anxiety is terrible as it was when he was in school.
They have suggested an autistc unit we said we may think about it but only twice a week as we enjoy the HE and he has come on well....but now i feel im just being took along with suggestions and sad that the old problems seemed to resurfacing for my son,i just want whats best for my son.

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ChunkyMonkeysMum · 17/10/2009 15:09

logi, do what you feel is right for your son. Don't bed led by the so-called professionals. You know him best, don't forget that.

My DS1 is also 5 and also has ASD. We put him in a mainstream school because we were advised by the paediatrician who gave us the dx to do so.

He has now been there a year & it has been the worst year of ours & his lives.

We have fought & fought for what we want & finally got the LEA to listen & are currently in the process of getting him into a Special Needs school. I know which one I want him to go to too & although there are apparently no places at the moment, I will not give up until I get what I want because it is what's best for him in the long run. I will not risk putting him somewhere else where he will not be happy, just to go through this process again.

I have often been made to feel by these professionals that I am just his mother, not an expert, so how could I possibly know what's best. But I know now, that because I am his Mum, I actually am the expert & most certainly do know what's best for him.

If you wanna chat, I'm always here

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Goblinchild · 17/10/2009 15:26

If you're happy HEding and he's happier, then it's not much of a decision really.
You could try the autistic unit and see if they are prepared to really understand all his needs and work with you, but I'd be tempted to HE if it's working out.
I'm a mainstream primary teacher with an Aspie son of 14.

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logi · 17/10/2009 17:27

Hi chunkymonkeysmum & goblinchild,i put my son in a mainstream school and had explained about his anxiety and problems and things were supposed to have been put in place to help him settle the first week the class size was halved (and only mornings) so he wasnt too bad then the class was put together and full day then he just
went to pieces we couldnt even drive past the school at weekends without him physically shaking screaming and begging not to be put in school at night he`d wake the same.
The deputy head one day suggested to take him out that afternoon as he was still 4 and didnt need to do a full day...the head then went to get our son took the book he had choosen out of his bag in front of him,grabbed his pe bag and coat then literally shoved it at my husband and said when you make up your mind you can come back.There was a meeting with the school,lea and us and and the head said they hadnt set anything up for my son as they should have and they only had the 15 min in the morn. to give my son one to one even if he was statemented they didnt have time,i even offered to stay with my son but they refused.

The unit he has been offered is newly built but and has a long waiting list but my son is terrified if you even mention school because he had such a bad experience.
He is very bright has a reading age of 10.7 can add subtract etc.but ive been told by this psychiatrist that his autism is often called "little professor" he uses language above his age but not always in the right context.He also talks to people/adults inappropiately....i guess as im still learning about ASD i want to know im doing the best for my son.

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ommmward · 17/10/2009 18:20

Do you need the respite? Is there a SEN play centre you could use? There are charity-run ones in various big cities - I know HEing mums with SN children for whom such places are a life saver.

Bottom line: the professionals are interested in getting you to use their services. They have funding to capture and jobs to protect.

Will the unit be a positive experience for him now? If not, don't send him. Wait six months or a year, find the social situations that he can cope with and build from them rather than trying to push something he's anxious about, that's what I'd do.

I think that with it's valuable to approach change and separation very gently, and take the child's signals of distress seriously, so that they grasp independence at their own pace and on their own terms rather than being pushed.

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ommmward · 17/10/2009 18:21

with

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ChunkyMonkeysMum · 17/10/2009 18:54

My son was eased into school gently. He started off going for an hour a day for the first couple of weeks which was gradually increased to full time after being there 6 months. TBH, it took too long IMO to build him up to full time (I am sure he could have coped with it much sooner as he had been at nursery for 3 years for 2.5 hours a day), but feel that it was very much to do with funding as he wasn't statemented until March so the school made out it was in his best interest but I'm not so sure. It sounds like it was the other extreme in your sons case, and he was thrown in at the deep end rather than gradually introduced to school & this scared him.

As soon as DS1 started full time, things went downhill. He was used to 1 particular TA for the first 6 months, then all of a sudden he had another one in the afternoons and this seemed to be too much for him to deal with. He was excluded on a couple of occasions.

Luckily, the summer holidays were the break from school he needed & so far so good since he has been back (1 of his TA's has changed again this year!!), but the school are still not equipped for his needs.

Sadly, mainstream schools do not have the necessary training/funding etc to give children with ASD the best education possible, but even more sadly, there are not enough ASD schools/units around for the number of children who need them.

Is the unit you mentioned attached to a mainstream school ?

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logi · 17/10/2009 19:58

Hi,chunkeymonkeysMum,i totally agree that my son was thrown in at the deep end,yes this unit is attached to a ms school.My son doesnt like lots of people around him or sudden noise,he was okish at the assess. unit he is currently attending until a new little boy 7 or 8 with autism joined and he has hit my son,pushed pass him a few times(my son only likes being touched on his terms) and recently spat at him and now my son is constantly saying i dont want to go anymore and i mean through the night(he doesnt sleep well)and from morning until hes asleep.Last week i took him and he was begging not to stay i ended up leaving upset then i think why did i leave him.
He has been assessed they are now really only keeping him there to try to keep the routine for him until they have a place for him at this unit.
Hi ommmward,if im honest i dont think this will be a positive experience for him,this is the longest time my sons been away from us. The past 6 years very tiring he has never slept a whole night through.
I will have to see if there are any sen play centres in my area.
I almost feeling guilty for having the offer of this unit and not really wanting it.
My son was telling me the other evening that he was spat at because "i am an idiot" which upset me,i know its not the other childs fault as he is sen too but i dont want my son to have a low self esteem.

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ommmward · 17/10/2009 20:27

where are you logi? CAT me if you don't want to put it out on t'internet - I'd be happy to see if I can track down that sort of play place on google - I know a few of them because of friends with SN children.

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logi · 17/10/2009 22:03

Hi,ommmward,im not great with computer(CAT??)i am in plymouth.

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logi · 18/10/2009 18:29

Hi chunkymonkeysmum, what problems does your son have at school,is the school you want attached to a ms school?

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ommmward · 18/10/2009 18:36

I'd contact these people here

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logi · 18/10/2009 22:44

Great,thanks ommmward

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aWitchForLifeNotJustHalloween · 18/10/2009 22:51

If you enjoy HE then stick with it ... but I'm a teacher at a school for children with ASD, and ime children with autism don't fare well in mainstream unless they've got heaps of support and good communication between home and school - which sadly hasn't been the case for you. As chunkymonkey says, you are the expert on your child - I don't know what we'd do without the info we get from parents on a daily basis, we need it to teach the children. IMHO that's absolutely the crunch. School that communicates with you and values what you have to contribute. If you find one - and the one with the ASC unit may be more clued up to this - then fantastic. Otherwise stick with what works and bollocks to the "professionals" if they're not listening to you.

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ChunkyMonkeysMum · 19/10/2009 11:32

Hi logi, sorry it's taken me so long to come back to you.

I'm so sorry your DS is having such a tough time at the moment.

The LEA have agreed that a mainstream environment is not suitable for my DS, not even a school with a unit. It has gone to panel now to get him into an ASD school. I am so glad about this as I really don't like the idea of a unit. Personally, I feel that in mainstream, DS already stands out as being different, but in a MS school with a unit, it is basically pointing out the obvious with these kids and makes them prime candidates for bullying.

I am lucky that my DS is well liked at the school he is in at the moment. He is mothered by some of the girls!! and no-one has picked on him.....YET. Sadly, he spends about 95% of his time at a desk outside the classroom with a TA because he cannot handle the noise and chaos of a classroom full of 30 odd kids. Also, his school is very open-plan so the Y1 classes are always in and out of each others classrooms, so there's usually around 60 kids floating around. It's just too much.

The ASD school we looked around has classes of no more than 6 children, with 1 teacher & 2 TA's. It was so calm & I really feel it would be the best place for my DS. The school involves the parents a lot & takes on board what we have to say, unlike the MS school who only seem to want to involve us when there is a problem!

Has your DS been statemented? If so, contact the SN dept at the LEA & ask for an emergency review meeting. That's what we did & it was agreed that MS wasn't appropriate (even with a unit) & that only an ASD school would be. The wheels are now in motion........watch this space!!

The only advice I can give you is that you really have to fight for what you want. Look round as many SN schools as you can. You will know if it would be the right place for your DS within a few minutes of being there. Trust your instincts.

If you want to talk privately, CAT me.x

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logi · 19/10/2009 12:21

Hi chunkymonkeysmum just found out what CAT means(not great with computers lol) i will subscribe later.
Our son isnt statemented but we have more or less been told that because he is attending this assessment unit they will be able to get him in as they have a bit more say than if i went for it myself.
Hi awitchforlifenotjust we seen the unit which is newly built looks and great but because my son had such a bad experience with school i know he wont settle,the lady in charge of the unit seems nice but did say they like the children dropped off but that wouldnt work for my son either,my son now constantly aks not to go to this assessment unit, day and night and gets upset and ive been told this is because of his autism and he will always focus on the worse thing and i have to ignore this but i cant as i dont think its right.
I know i want to HE and i keep getting talked into maybe try the unit...i think if we had tried the unit before school things may of been different.
Ive just rung the doctor who is trying to get him a place at the unit but she wasnt there so ive left a message saying we wish to stick with the HE now im dreading the phonecall i will get back which sounds ridiculous ...im his mother! He is not at the assessment centre this week as we have flu.

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ChunkyMonkeysMum · 19/10/2009 13:22

When she phones, just tell her that you are not dismissing it altogether and you appreciate her efforts for helping to find him the place, but at the moment you feel it would do more harm than good as he is petrified at the thought of school. Maybe say that you want to give it 6 months or so and perhaps look into it again then.

Unless.......the unit are prepared to let you go with him to start with. Sit at the back of the room & observe, so he knows you're there. Then perhaps they could gradually take him on his own, like for an hour at a time, while you go and grab a coffee, gradually working up to full time. That way you could at least say you tried.

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logi · 19/10/2009 17:33

I will see if they call me to discuss it.
Im so stressed...it was such a big decision to HE now im back to more decisions(not my strongest point)...i will let you know whats said.
LOL i feel like im back at school waiting to see the head.

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