Where do I start to help my kids?

I have been very lcuky with my asd son's school and they have always been supportive. If you get nowhere with teachers, go to the head teacher and if that doesn't work go to the school governers. Speak to IPSEA as they can tell you where you stand legally. Also contact your local MP and councillors and explain the situation, they are there to help so use them

You know what moved me most about your posting - this line -

Why for once couldn't it have been perfect?

I know, I know!  What you want is for life to be just easy and straightforward for once, as it is for so many people, and it is so sad when something ruins it at the end.  Everyone else here has said many helpful things about what happened, and I can't add to those, but just wanted to say - I know how you feel.  For most of the other children there, it would have been routine - an invitation, a party, a great time out.  For you, and for him, what happened was a huge achievement and no one else can see how much that matters, which is why it's so devastating for you when it goes wrong at the end.  But hang onto the beginning bit - which was good.  You, unfortunately, didn't get the good bit, which he enjoyed - you just got to cope with the aftermath!  But the good bit still happened.  Hang on to that.  And rest assured, there are others out here who know just how you feel!

Dear Aspie Angel

What stands out for me here is when you wrote this:

"I had my six year old referred to a psychiatrist on the 2nd January this year as he was depressed, had started self harming, and had suicidal thoughts."

If that is happening then whilst your son may appear on the outside to be coping, as Longman points out, what is going on under the surface is clearly a very different matter.  My advice would be to bring up the mental health concerns with the school - these are very serious and if not nipped in the bud could lead to greater problems later on (my son was of a similar autism profile at a similar age).  I would do this in writing and ask that your son be put at School Action, which is one of the steps before a statement of special educational needs.

At the very least, he needs an Individual Education Plan to set out the social and emotional gaps in his development and to identify what provision can be put in place to meet his needs. 

Personally, I havent found anything within school settings that works on social and emotional development in a meaningful way.  All thats ever been offered at school as far as I can see are interventions which merely scratch the surface and do not really go to the heart of our children's problems - problems with rigid thinking, episodic memory (which is at the root of the development of resilience - our kids lack the ability to 'bounce back' from a setback which contributed to your son's difficulties when the balloon escaped), problems with emotional regulation (where the challenge of losing the balloon was just too much for him to manage) and difficulties understanding other people and the world.

If your son is self harming, depressed and having suicidal thoughts, he may benefit work on episodic memory and emotional regulation....this certainly helped in our case. 

Here is a link to me discussing what has helped our son improve his episodic memory (and therefore, his resilience) and his emotional regulation:

http://notnigellanotjamie.blogspot.com/2011/01/memories-of-competence.html

I think you have got a fight on your hands - its much harder to fight for provision for children at the so-called 'higher functioning' end of the spectrum, because their IQ and verbal ability often overshadows and masks the very serious problems with social interaction and social understanding which can go on to have a dramatic effect on mental health (its all there in the research literature).

But it is possible to get the right provision if you get the right information and the right help and support. 

Best of luck

Zoe

Thanks to everyone who has offered me advice and support! I'm going to systematically work my way through all the links that you all have kindly forwarded for me. It just goes to show that parents are by far a greater force than the so called professionals! I'll try and find your blog Zoe x

Oh, what a 'rollercoaster ride' for you all.

How disappointing too that you haven't had a reply from Parent Partnership. You may have to give them a little longer to reply, or I see no harm in emailing again or phoning them.

In the meantime you might want to take a look at a leaflet on the NAS website written for professionals that has advice for schools and talks about our children keeping a lid on things at school. You could take it in for them to read:

http://www.autism.org.uk/working-with/education/educational-professionals-in-schools/pupils-with-autism-in-your-school/asperger-syndrome-a-schools-guide.aspx

Do the outreach team know that the school have been ignoring your advice, and therefore their advice too? If not I wonder if you could ask the outreach team to be more proactive in encouraging the school to listen and learn, and above all to understand.

Or is it the small things in the wider context? I do feel there is a danger in looking only at the incident that caused the reaction. Agreed things had worked out well at the bowling alley.

But consider that all the time this is a child trying to cope in a world where most other children seem to manage better, and where criticism for not managing as well as other kids (being different somehow) keeps surfacing. Add to this the stress of coping well at the bowling alley, the noises, the complex movement of people, and other sensory inputs. The bowling alley might not have triggered a reaction, but the balloon might have been the last straw after the stress of doing well before.

This blowing up over small things is what tends to lose people on the spectrum sympathy, because people link the reaction only with the immediate interest. You need to appreciate that coping in what seems an alien world takes a lot out of him.

It was nearly seven o'clock when my son returned (with a big smile on his face) from his bowling trip. I was over the moon to hear that he had behaved himself, and apart from a few minor incidents in the bowling alley, he had coped very well. I was sooooo thrilled when his friends dad said he could come over again. For once, it felt like we had managed to do something normal for a change, the boys had had fun what more could I ask? Until........................

............my son accidentally let go of his McDonalds helium balloon! I watched in horror as it floated off above the rooftops! Then came the screaming! Then came the head banging off the floor, and my son trying to break a limb. Then came the, "I hate my friends, I should never have gone to McDonalds or the stupid bowling alley! I'm never going out again!"

Why for once couldn't it have been perfect?

He forgot all about the good experiences he'd had, and was focussed intently on his loss. The tantrum continued until he eventually gave in, and his red, bulging puffy eyes finally shut and he went to sleep. I went to bed wondering if the routine chart would have helped. If his stress levels had been reduced in the first place, perhaps losing the balloon wouldn't have been such a big deal.

You are absolutely right, it's the small things that can often make the big difference. Because my son has become an expert at keeping a lid on things at school, they think he doesn't need a lot of the resources which I provide for them, so don't bother with them. They have been told by the Outreach team to use them as well, but they ignore them as well. They underestimate just what is going on in my complicated little man's head!

Having used this website for the first time this week, I have found much comfort in being able to 'let off steam' and have a good moan! It's great to have a rant to people who understand, and the advise you have all given me is wonderful. It inspired me to email my local parent partnership to arrange a meeting so I have someone fighting my corner with me.

They didn't return my email........they don't want to know either. I may as well live on a desert island.

Oh how frustrating that the teacher didn't just take a few moments to give him the chart. I'm presuming that she didn't realise how important the chart was, and I guess this is one of the main things you'll need to get through to the school - the importance of listening to you, and of being prepared to do quite small things that will make a big difference to your son's day. I'm not suggesting that you waltz in and boss them around and say 'you have to do this or that', just that you ask them to understand your son's difficulties, outline some strategies that work, and discuss with them how they can help support your son appropriately during the school day.

Despite the chart not reaching him I do hope your six-year-old enjoyed his time with his friend. 

Thanks for your support Jenniferwave.

I'll tell you an incident which happened today, which is fairly typical of the treatment we receive from the school:

My six year old was being picked up by another parent for the first time ever tonight. He had been invited to go bowling with a friend, and was very excited, and showed no signs of stress about it. However, he woke up thismorning extremely anxious because of the bowling. He can't cope with failure (when he doesn't knock the pins down) and gets extremely hard on himself. He was crying and saying he didn't want to go. I pointed out all the positives, and managed to get him to change his mind. I told him that I would speak to the parent at the railings, find out exactly where they were going/what they would be doing and write a little routine chart which I would send into the school as soon as I'd done it. He was happy with that.

I wrote a note warning his teacher, telling her about the routine chart, and asking her if she would let him read it throughout the day.

I drove straight home, got out the laptop, and did a fab routine chart complete with McDonald symbols and bowling clip art, and had it to the school by 9.45.

I spoke to his teacher at the gate tonight as I was picking my 3yr old up. I asked her how he had been, she said he'd been ok. She said my routine chart was fab, unfortunately she'd been too busy to give it to him, and he hadn't even seen it!

Why do I have to put up with this? I'd provided the chart all she had to do was give him it!

Aspie Angel

Please don't feel guilty for wanting resources for your children. It is really good that they do cope quite well, but that doesn't mean that they aren't deserving of support that meets their particular special educational needs.

Special educational needs doesn't just cover academic/cognitive learning, but social and emotional too. And sometimes schools need reminding of this.

Your boys should be being helped to achieve their full potential. 

I encourage you to continue to fight for your children. I suggest you read the leaflets on the NAS website, eg, 'Getting extra help', and the Special Educational Needs Code of Practice (available to download from www.teachernet.gov.uk), especially chapter 2 that talks about working with and listening to parents. 

Good luck.

Thank you Francesca,

It's great to know that when you feel so helpless and lacking in knowledge, you can come to this website to get help.

All I want is to know how my kids can be helped, even if it means me doing it all myself, if lack of funding for resources is the problem!

I read books about parents who have tried this, or that, and I think to myself how much improved my childrens' conditions would be if someone would just spend a little directed time with them. Do I fight for it, or just sit back and watch the school and the outreach team neglect their responsibilites? To me, there is no choice!

A part of me also feels guilty for wanting resources for my children when they do cope quite well, and we are so lucky because we could have it so much worse. But I feel the whole system is letting kids with asperger syndrome down as often they are too good for their own good! People shouldn't forget that those kids often are suffering more. I had my six year old referred to a psychiatrist on the 2nd January this year as he was depressed, had started self harming, and had suicidal thoughts. He still hasn't been seen by CAMHS yet. What more can I say? His pead consultant was not concerned in the slightest bit, saying that a lot of ASD kids have these thoughts. So does that make it ok then?!! So i just have to accept that my six year old is so sad he wants to throw himself under a car, because that's normal?! It's not good enough.

Rant over!

Hi aspie angel

I am sorry to hear of the difficulties you are facing with trying to find support for your son at his school and your worries over your youngest son.

You may want to contact our Education Rights Service where information, support and advice is provided on educational provision and entitlements. Please see the following link for further information:

http://www.autism.org.uk/educationrights

The following article contains a lot of helpful information about education for a child with an autism spectrum disorder:
http://www.autism.org.uk/en-gb/living-with-autism/education.aspx

 
This includes information regarding getting extra support for your child in their education setting.

It may help you to contact local support groups.

You can search for services in your area on the Autism Services Directory:

www.autismdirectory.org.uk

This includes services such as: support groups, social groups, advocacy, befriending, residential settings, outreach and respite

I hope some of this might be helpful to you