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Where to get help outside school ?

(18 Posts)
Babieseverywhere Mon 24-Nov-14 10:42:15

I am posting this on two boards (sn and behaviour) as I have no idea where I should be posting.

My question is, where do I go for help with DS outside the school system ?

Background.

DS is 6 yo. He is very quirky. Doesn't sleep much. Often ignores us when we call him. Highly anxious especially about school and struggles socially.

He has had a stomach ache since September the doctor says it does not have a physical cause..All the same it worries me.

I have really struggled to walk him to school over the last few years. He reacts anywhere from verbal complaints, refusing to walk down to threatening to throw himself in the road under a car and kicking and hitting me. He hates school.

He claims to have no friends at school and is never chosen to have a partner. He also claims he has 30 best friends, as the teachers told him he had.

He will say anything to stop the questions. He changes his opinion at the drop of a hat, so trying to get an honest opinion off him is very difficult. His teacher last year agreed this was the case. He masks all the time at school, as he is frightened the teachers will shout or hit him !

He never gets play dates or party invites, outside a couple of my friends who gave children around his age.

He now plays with a child with SN who often hits him. DS told me the name of the game they play but couldn't explain how it was played.

School say he has loads of friends and is very affectionate (one of my concerns, he would go off with any stranger)

School say they see no problems. They don't see him spinning across the playground, bolting ahead paying no heed to the traffic on the way to and from school.

He is so anxious that he won't sleep in his own room and insists on sleeping in his sisters bedroom.

He won't be upstairs or downstairs on his own...he is too frightened. We have a rota for people to go with him to the toilet..else he will have an accident rather than go on his own. sad

As he is also frightened when everyone else is asleep. So when he gets up at 3, 4 or 5am he will wake me and/or his 4yo sister up....We are on our knees with tiredness.

He struggles socially. Doesn't get social rules or understand games rules unless they are carefully explained and then he follows the rules rigidity and gets very upset if anyone breaks one.

He does not get irony or sarcasm and takes everything literally. Ask him to pick up the plates...he will do but he will not pick up bowls or cups as they are not plates.

He hates change and gets upset if things are sprung on him. So we use a visual timetable.

He tries his best to socialise but often stands too close, often shouts (volume wise) and hugs tightly when children don't want to be hugged.

Children try to interact with him but don't get him and sometimes he can react badly which doesn't help.

His only hobby is an obession with Minecraft and to a lesser degree Skylanders and he would spend all day on a computer if I let him.
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Professionals.

Audiologist said he has normal hearing range. Plus sensitive to loud noises. Concerns about social interactions.

Comm Paed said Issues with Minor and Gross Motor skills..referred to OT. Concerns about social communication interactions referred to a special panel to discuss.

Outreach assessment at school. He makes many attempts to socialise therefore fine. I disagree, he can't socialise properly...failing to socialise shouldn't be a pass but it is. So panel via Comm Paed will give no help because of this assessment.

SALT says social communucation difficulties...particularly due to rule understanding and social rules. Referring him for social classes with a 6 month waiting list.

Education Psychologist listed issues I was concerned about. Ignoring other children and being rule bound. Not listening to teacher in class and not understanding rules of the game he was playing and then told me it was all normal for 6yo boys.
She started off by telling me how fine he looked at school and how many friends the teacher told her DS has and finished by telling me how a child had tried to interact with DS, who had turned around and screamed at them and said no wonder he has no friends if that is the way he behaves ! She also agreed that he says whatever you want to hear and will change his answer in a second. I think this is masking difficulties, she said it is normal.

Behaviourist sent to my house by headmaster due to DS sucide threats, as the problems were clearly at home angry Behaviourist admitted the school did not believe me and DS looked fine at school. She agreed that there was no issues in our home and we are good parents.

I also completed an Triple P parenting course on my own bat...as I wanted to check it wasn't me...it taught me nothing I don't already do. Family Lives who offered this course do not offer anything further..I did ask.

Senco is a nice lady but clear she sees nothing in DS. She has emailed other professionals telling them, there is nothing wrong with DS and the mother (me) wants something wrong with her child sad angry DS has his own sticker charts for behaviour, IEP 's and I hear how often he loses golden time....Yet he is just a normal boy.

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What can I do ? I just want him to be happy and stop worrying about being ill, being on his own, thoughts about me dying and faceless monsters.

Ignoring school who will never help.
...what can I do at home to help him ?

ps. Be kind as I am a bit oversensitive as our 2yo has failed her 2 year check for the same issues social interaction and language problems...her hearing is fine and we are going through the system with her too.

jThompson Mon 24-Nov-14 11:05:54

I'm in a similar position, even though DS now has a diagnosis it seems the support (which is fairly minimal anyway) is focused on school and since school claim he's fine there (AKA he's more likely to shut down and sit in a corner reading than lash out or be disruptive) it still feels like I'm working it out myself.

Sorry, I can't be much more help on getting people to listen, but there are a couple of books I've found useful.

The out of sync child - I found this really explained DS well. Things like the sensitivity to noise/textures etc and to some extent the getting in peoples faces, hugging to hard and things.

When your worries get too big - this ones a work book with pages for your child to fill in about what makes them feel happy, worried etc and ways they might try to calm themselves down. We've photocopied the pages so DS can go back and fill them in again over time, he's surprised my with the things he's bothered by.

Babieseverywhere Mon 24-Nov-14 15:05:58

Thanks for your post, we are working through that book. DS won't tell me about any worries...he doesn't worry he just thinks about things all the time...arghh. smile

fairgame Mon 24-Nov-14 16:20:43

If you lived in my borough then the only support you would be able to get without a diagnosis would be from the children's centres. The family support workers at the children's centres can help children work on anxiety issues and one of the children's centre has a SN social group once per month and the children just need to have difficulties rather then a diagnosis to attend that. There might be something similar in your area?
Other than that it would be accessing local support groups or books like jthompson has suggested.
Support is woefully inadequate in most areas regardless of whether or not you have a diagnosis.

Mollyweasley Mon 24-Nov-14 16:29:50

I know what you are going through, we had to seek a private diagnosis for DS as we were going no way on the nhs and at 6yo we were also desperate. He is now 9 years old and doing much better. The diagnosis is very important and you can only keep going and keep asking for more professional to be involved ( have you ask either parent partnership or the national autistic society for advice).In my experience often primary school teachers are not trained in asd and often can not see children's difficulties I.e. The fact that he interact with others does not exclude asd. For the anxiety you could try CBT there are plenty of tips on anxietybc.com. And for the social rules try social stories by carol Gray, you can learn to write your own! they work with my children but I know they don't work with everybody. Keep going you will get there!

Babieseverywhere Mon 24-Nov-14 19:39:45

We do not have the money to go private.

Also unsure what the issue is....I originally thought it was Aspergers but school outreach said no way it is that as he attempts to make social interactions (fails to do it correctly but tries)

My friend thinks it could be Dspraxia as her child was dx's recently and she thinks they are similar.

All I know for sure is...that he struggles socially and is anxious.

Thanks for website details, I'll check it out.

We3KingyofOblomovAre Wed 03-Dec-14 21:10:49

I had to respond to you, because your posts make my heart break. I totally understand every word you say.

someone once said on the sn boards , that school only do something, if its presenting a problem TO THEM.

and once you realise that, you get the perspective. perspective that I myself have lacked.

I'm not sure if there is an actual resource or support network, outside of MN sn. I fear not. let MN guide and help you. because I'm not sure anyone else can .

bug hugs to you.

streakybacon Thu 04-Dec-14 08:12:49

I'm trying to think how to respond to this without disheartening you, so I'll apologise in advance if I don't manage it.

We were in a very similar position when ds was your son's age. His school was highly inexperienced regarding autism and ADHD (he went on to be dxd with both) and was dealt with as a very naughty child, and punished accordingly. He had no 'support' in school until post dx at age 7, and even then it was inappropriate, irrelevant and in some respects more harmful than no intervention at all. I can sympathise with you about this - it is extremely difficult to meet your child's needs when all around you are against you, and undermining your genuine concerns. In my experience, schools' desire to 'work in partnership' means that they will tell you what to do and you will do it, even when it is wrong. Inexperienced, untrained teachers can do a lot of damage to autistic children if they don't know what they are doing and are too arrogant to share knowledge and experience from parents.

Schools are also in a powerful position when it comes to diagnosis. Assessing professionals automatically seek schools' views and these generally outweigh parental opinion, which isn't always the best approach. Given that so many schools and teachers have little understanding of autism and similar conditions, it's worrying that they have so much control over outcomes for our children, but sadly that's how it is.

I am cutting our story ridiculously short but in time we went on to home educate. Given that there was no support available to him in schools, it was harder still to find it outside. We found that most resources had very limited budgets and remits and my son didn't fit any of their criteria. I approached my MP as a last resort but he wasn't able to find anything for us either. Even when we were willing to spend money on private provision, we could find nothing that suited.

We did eventually get ADHD diagnosis via a private consultation but it was very expensive and I know you've said that's beyond your reach. It gave us the label he needed and an option to trial medication, which made a considerable difference.

To be frank, we found that there was no relevant support available either in or out of schools, or on the NHS, that could benefit ds. Everything we have done with him we've sourced and learned about for ourselves and I've devised my own strategies for working with him, as most parents do in the end. I guess that's what I'm saying to you - don't rely on finding the right support within the system because chances are you'll be disappointed. You will do far better if you read and learn and observe your son, go to training if you can find it, talk to other parents (SN boards here are fantastic, as you will already know), and find your own path. Unfortunately it's what we all have to do when statutory provision is inadequate or non-existent.

I'll end with a word of encouragement. At your son's age my ds had a very similar presentation and he was a constant worry. His anger was horrific, he was a danger to himself and other people, we couldn't get through to him because of limited emotional expression - life was utterly, utterly vile. He is now sixteen and an amazing young man, achieving academically and socially, to the point where most people have no idea of his diagnoses. You CAN have a brighter future for your son, but you can't rely on professionals services to provide it - you will have to do most of the work yourself.

streakybacon Thu 04-Dec-14 08:19:27

Btw I'd disregard what your outreach person has said, that it can't be Asperger's because he tries to make social interactions. That's bollocks, frankly. Lots of people with autism try but fail socially - autism doesn't mean they always avoid social contact, but that they have problems with it, and clearly your son fits that description, as does mine and many others with similar presentation.

Bear in mind that outreach person isn't qualified to diagnose, so you're free to ignore her opinion.

Babieseverywhere Thu 04-Dec-14 12:09:26

Thanks for the posts.

I know I have to do things for myself but sadly the school thing is blocking DS support at all turns.

Comm Paed was thinking of dx but holding off as school see nothing.

We have been offered an OT session with a local charity that we can't take up as it falls with school time and I can't get permission to take him sad

I understand school see nothing but why is their opinion so important sad

streakybacon Thu 04-Dec-14 12:35:25

I know how frustrated you must feel - it still annoys me all these years down the line sad.

Is your GP supportive? Could they sign ds out of school to attend the OT session, and call it a medical appointment?

Tbh I think it's unlikely that school 'see nothing', but perhaps they don't know what it is they're seeing. If you wear an autism head, you see autism everywhere. Sounds like the school are defaulting to NT so aren't being alert to the signs.

Have you any written evidence of problems within school? Eg incidents in a communication book, or emails alerting you to behaviour? Is school reporting ANY behaviour that might be of concern? You need to get as much evidence as you can so that you can by-pass their official stance that he's 'fine' and show that he's not.

Babieseverywhere Thu 04-Dec-14 13:31:59

I will wait until I hear back from Senco first, give her time to sort things out.

Babieseverywhere Thu 04-Dec-14 13:44:26

To be honest we have so many children who are very high on the spectrum at our school. The school has a special unit.

How can they see difficulties in a child who is quiet and in his own world, when the other children are screaming, kicking etc.

DS's class has several children who need TA or further input. I can understand why they don't have the time or energy to look at children who are more subtle in their issues..like my DS.

bialystockandbloom Fri 05-Dec-14 23:25:21

You poor thing, and your poor ds - I really feel for you all. Honestly, if it was me? I'd go right back to GP, present with list of everything you've said here, and demand a further assessment not by community paed, but developmental team.

I'd also go back to school, head teacher and Senco, with the same list, and say he needs to be put on school action register as otherwise it will be nigh on impossible for him to keep going as he is so unhappy.

Look at NAS website and print off sections about aspergers to present to them. Asd does not preclude a child wanting to make friends, that is absolute bollocks. It honestly sounds to me that he is being failed by school. You have clear evidence from salt that he has social communication difficulties, and this is a vital part of school. It's so tough, but you sometimes have to get seriously forthright to get help - don't worry about ruining relationship with school- the important thing is getting help for your ds.

Take him to the OT group - he can be sick and off school that day wink

Look at other schools ASAP.

Can you possi ly scrape together any money for independent EP, or private assessment? It would be c.£500-700 possibly. But people here could point you in the direction of good ones.

bialystockandbloom Fri 05-Dec-14 23:26:40

Oh and keep a daily diary of everything, every difficulty, incidents etc. Hard, but might be useful.

2boysnamedR Sat 06-Dec-14 13:56:31

Agree - say he is sick and go to the OT

lala21 Sun 07-Dec-14 12:54:44

I could n't read and run, I have no professional advise only motherly - we have a long awaited CAMHS meeting tomorrow and have a supported school but it was not always like this

Anything I am saying is just ideas-

1) agree with other posters outreach person is talking rubbish- ASD children
can learn certain rules which can show to the ignorant that they are completely typical when their stress levels are quietly going nuts.

2) Walking to and from school- do u drive ( I know I know) with my DS (nearly 6) I set myself a little goal we try and walk 3-4 mornings and 2/3 pms from school ( have 4yrd old and 1 yrd old) but to keep my sanity going I drive to stop the running off, refusing to listen or just not going anywhere.

3) When we walk we have stickers, or choc buttons ( i know I know) BUT DS loves bugs so we try and find 4 bugs he can then draw when he gets home. ( I have to plan this and take snacks along the way as it can take 45 minutes but its his little project) or we cloud gaze and then come and look at them in his book- or computer- IT CAN B ANYTHING that you and him agree to investigate - have to lay the rules out, or we'll collect leaves and then stick them in a leaf box

4) I have a box for DS where anything organic ( leaves or twigs) he can put them in if he picks up along the way

( THIS HAS BEEN A LABOUR OF LOVE BUT TAKEN A WHILE TO WORK OUT WHY I WAS SO STRESSED DOING THE SCHOOL RUN)

The Play Dates- Tbh our children need children they feel comfortable with and know. They are over rated - use the few children you know and plan themes to your play dates so its ( bring your oncies and have a pretend sleep over) or come over and we'll do Den building

With the issue of sleep- is it a problem if him and his sister share, or could you agree that he sleeps in his room for 4 nights and then Friday night is a sleep over in his sisters room.

What frightens him- is it that he is alone, dark, does he have a comforter ( we've ordered a light show one for DS)

Outside of school many times we are on our own and have to resort to seeking help from others in similar situation and its exhausting - will try and think of some more and come back to you have to run

SORRY THIS IS LONG

Babieseverywhere Mon 08-Dec-14 09:38:35

Thanks Lala smile

It is very difficult to park near school which is why we always walk.

I would be very happy if DS spent one night or even fell asleep in his own room but it never happened. The day I moved his sister out, he followed her that day. He will not be on his own.

He was accidently left downstairs on his own (playing on computer) yesterday and when he noticed that we were all upstairs (bathing kids and packing work bags)

DS ran upstairs. He was shaking he was so frightened and that was 2 minutes sat in a fully lit, heated room playing on a computer was too much for him. sad

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