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On our own again!

(22 Posts)
OneInEight Sun 18-Oct-15 07:43:46

So after four years of fighting for support for ds2 - you name it we have been there and done it - we have withdrawn him from his specialist school as it was causing him more problems than it was solving. This follows discharges from community paediatrician, CAMHS and social services (actually the latter just disappeared). This means we are totally on our own again with one messed up child. I am terrified quite frankly but the sad truth is that all the interventions just seem to have made it worse for him so our last shot is the no intervention strategy. Please someone tell me that it has worked for their child to give me a bit of hope.

PolterGoose Sun 18-Oct-15 10:05:26

Message withdrawn at poster's request.

Ineedmorepatience Sun 18-Oct-15 10:13:21

It is working for us! Dd3 has only ever had SALT intervention anyway and 1 session with an EP to alledgedly be taught to meditate!! (She was having non of that!)

Its going to be tricky to strike a balance between leaving him to de school and recover and him sinking further into depression!

We started off with just a walk everyday or a bike ride and have built up from there.

We have only one screen time rule and that is that when we are going out the larger screen stays in the car. The phone with headphones and music still comes.

Mostly be kind to yourselves, the journey you have all been on has been horrendous.

Good luck flowers

OneInEight Sun 18-Oct-15 10:57:29

What does ds2 want to do?

Stay under his duvet all day!

* Do you have a plan? *

No, not really. I think both he and us need time to lick our wounds and mentally recover. We will try to improve his mental health first and foremost, next self-care (absolutely rock-bottom at the moment) and only then think about education.

Our biggest fear is that it will disrupt ds1 but are hoping he is sufficiently well settled now at his school for it not too impact too much.

Ineedmorepatience Sun 18-Oct-15 11:16:28

I think you are right to put education as a low priority for now! Hopefully his natural desire to learn will start to kick in again when his head isnt overflowing with other stuff!

We have certainly noticed that Dd3 is asking questions again and is taking an interest in the world around her again which if I am honest has been disappearing since she started school!

I really hope that Ds2 is able to understand that this is what Ds 2 needs to survive at this time, maybe you could sell it to him as being the lucky one who got the school that understands his needs and can support him!

All you can do at this stage is sit back and give him time.

Good luck flowers

Ineedmorepatience Sun 18-Oct-15 11:17:30

Oops that should have said "I really hope Ds1 is able....."

PolterGoose Sun 18-Oct-15 11:55:32

Message withdrawn at poster's request.

PolterGoose Sun 18-Oct-15 11:59:12

Message withdrawn at poster's request.

OneInEight Sun 18-Oct-15 13:15:40

Thanks for the messages. Will look into that approach Polter - thanks.

QueenStreaky Sun 18-Oct-15 13:41:57

Hello One. Sorry you and ds2 are going through this. Your school experience sounds similar to ours. My son had no meaningful or relevant support all the time he was in school, up to the beginning of Y5 when we withdrew him to home ed as a matter of urgency. School was extremely damaging for him because there was no intervention for him, and other agencies such as CAMHS, OT, SALT etc were pretty useless.

I also felt wary of taking on the full responsibility on my own, but tbh I don't think there was much choice in the matter. The present situation was harming him and I considered removing him from school as an act of protection, which he very badly needed.

School is a very stressful place for children with autism (don't know what your son's SN is), and the pressure on my ds was enormous. HE allowed us to build him up from scratch, focusing on a balance of academic work and personal development, at HIS pace, and pulling back when it got too much on him. It didn't take long before I realised that the lack of professional involvement was a huge advantage, because I knew what he needed and I no longer had unwanted and unhelpful interference from people who operated stereotypically and in ways that weren't helpful for my son as an individual. It took time but gradually he started to settle and blossom.

My son is 16 now and has just started college in September. Because we have an EHCP I negotiated a complicated first year of sixth form across three different settings - mainstream college, autism college and work placement - and he is thriving. He got 8 very strong IGCSEs, after studying at home, and he's now doing A levels. He is independent, calm, has friends and is HAPPY and none of that would have been possible had we kept him in school. The change in him in the last eight years has been incredible.

Please try not to worry. Doors will open up to you and ds2 and you'll find there are lots of ways to support him without the need for school. Having that full control is incredibly liberating, and you can play your days and weeks exactly as HE needs, not as someone else thinks it should be.

And you are absolutely right that his mental health is your (and his) first priority. Children don't function to the best of their ability when their heads are screwed, so take time to adjust before you jump into anything more serious than having fun and feeling better about life.

Do let me know if you want to talk more. But please don't worry flowers.

Ineedmorepatience Sun 18-Oct-15 16:43:51

www.amazon.co.uk/Home-Educating-Autistic-Spectrum-Children/dp/184310037

I have been recommended this by several people. I will be honest I havent bought it yet but its on my reading list!

[[

zzzzz Sun 18-Oct-15 16:53:10

It worked for us smile it was exhausting for me though but three years later I have a happy boy, now in school and this morning he CHANGED HIS MIND about something and smiled. I am proud of him and us and we did the right thing.

Ineedmorepatience Sun 18-Oct-15 18:09:45

Am I right in thinking zzzzz that you had other children in school while you were home edding?

I dont have any experience of that because Dd3 is my last one and the others are much older.

OneInEight Sun 18-Oct-15 19:11:28

Thank you so much for posting that QueenStreaky. It is so reassuring to know it has worked for some as school staff were filling our heads with doom and gloom. And so glad it has worked for you too zzzz. ds2 has an AS diagnosis although we still wonder if it is correct - anxiety / paranoia is his main problem at the moment. Will be looking up the recommended books too.

Ineedmorepatience Sun 18-Oct-15 19:28:40

School staff dont know any different one when I stopped sending Dd3 to school a friend who had done the same a yr before me said "Welcome to the darkside" you would think listening to school staff and LA people that it actually would be but honestly it isnt.

For us it has been the opposite, at the end of the day things couldnt have got much worse and now they are definitely hundreds of times better!

Take one day at a time and remember time heals!! We did absolutely nothing at all in the first 3 months other than go for walks, go on holiday and sleep!

zzzzz Sun 18-Oct-15 19:50:24

Yes I had other children at school. I also had another child who was HE for some of the time.
If you can afford it I thoroughly recommend Interhigh.
<whispers I have HE all of my children at one point or another I just don't advertise and we are into school for the next few years>grin

zzzzz Sun 18-Oct-15 19:53:24

Oh and teachers and other staff are HIGHLY unlikely to be positive. They are spending their lives providing institutional education.

QueenStarlight Mon 19-Oct-15 11:06:52

I've only read the OP but OneInEight I'm so sorry it has come to this but also want you to know that taking full responsibility for your child's mental health and education is imo one of the MOST, not least, responsible things you can do, especially when you have evaluated the alternatives to the extent you have.

I'm not sure what you mean by 'worked' but I can tell you that though obviously bringing its own challenges, HEing was fantastic for the whole family, even though some kids were still in school.

One thing I learned too is that of course I made mistakes. However the difference was that those mistakes could be rectified and undone in real-time and immediately, and essentially, they were noticed and admitted because the determination to get things right and make a difference was always there.

I learned so much about ds, and essentially have a bargaining chip I never before had with his now school placement. For his prior learning and needs they have to refer to me, and they know that returning to HE is not an empty threat if they mess up.

QueenStarlight Mon 19-Oct-15 11:14:40

'school staff were filling our heads with doom and gloom'

Of course. HE is undermining all they believe in and are trained in. However, round my way at least a 3rd of HEers are teachers who believed in the system until they recognised it wouldn't actually work for their own real life child.

And there is a lot of ignorance. Plus no two HE children receive the same education so it is impossible for anyone to evaluate whether it is better/worse than school for a particular child, except of course the parent, which is you.

My DF, a Teacher-trainer went on a course once and they did an exercise where they brainstormed the benefits of school on a massive interactive whiteboard and then spend the next 10minutes removing all of the things that could be provided elsewhere to school. The only thing left was 'free childcare' which if I'm honest, is the biggest challenge for HEing families.

But even that you can figure out with activities, and I had DH come home from work a little earlier on Thursday because that was late-night shopping in our area so I could hang out in the shops doing the boring shopping stuff like buying shoes, tights, or birthday presents etc. once a week.

Ineedmorepatience Mon 19-Oct-15 16:44:29

Oh and one you are never alone on here!! flowers

OneInEight Tue 20-Oct-15 16:17:40

Thanks all for the messages. Thank goodness for the internet that's all I can say. Agree teachers may be ever so slightly biased. Have managed to persuade him out from his duvet for a brief walk today so that is a start.

Ineedmorepatience Tue 20-Oct-15 18:20:40

Yay! Well done one that is a great start! Take it one day at a time smile

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