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Where to get help outside school ?

(12 Posts)
Babieseverywhere Mon 24-Nov-14 10:43:23

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.

Sleepytea Mon 24-Nov-14 10:55:15

You sound so worried and frustrated. I don't know about the system for you to get help but one thing that strikes me from your post is the socialisation worries. Have you read the unwritten rules of friendship? You can get it on Amazon. I find it very useful to dip into with my children when they are having friendship issues. It helps you understand the situation from your child's perspective and suggests things that you can do to help. Hope someone else has some more useful answers.

mummytime Mon 24-Nov-14 11:28:18

Can you go back to the Paediatrician? I would also see if you can be referred to CAMHS due to the suicide threats.

IASS formerly parent partnership may also be able to help. Your son has issues consistent with ASD, I might well contact NAS for help and guidance even if that might not be his issue. They are big so have help lines. The advice will not cause harm (at least on the most part) to anyone who doesn't have ASD, but may give you new strategies.

Is there another school? Does he have any activities out of school?

thedevilinside Mon 24-Nov-14 12:14:28

Have you looked into PDA?, my son has an asd/adhd diagnosis, but a few of the traits don't apply, for example my son has never needed a routine and is happy with novelty. He also gets obsessed with other children and is quite sociable on the surface. the 'saying whatever you want to hear' is apparently common with PDA children and a way of avoiding demands

Yackity Mon 24-Nov-14 14:06:30

Oh my goodness, you poor thing! What a nightmare.

I don't have advise on the system. However I would advise you to start documenting everything. Keep a diary of what is happening, both good and bad so that it can be balanced out.

That diary is what you can use to chart behaviour.

My other instinct would be to go to as simplified diet as possible, to make sure he isn't reacting to any chemicals in diet. Some preservatives and colourings can really affect some children, but you won't know it until you try. I would certainly try THIS before trying any medication.

Babieseverywhere Mon 24-Nov-14 15:01:15

Local parent partnership lady agreed with the school that boys need very different patenting to girls and that he "looked fine"

Thing is if all his behaviour is "just a boy" what does the identical behaviour on his younger sister mean...is she "just a boy" too ?

I was keeping a diary buy I could fill a book a day and after filling 60 A4 pages of diaries covering 6 months. ..I stopped. sad

Will look up that book recommendation and PDA symptoms too. Thanks.

Babieseverywhere Mon 24-Nov-14 15:04:16

We will be seeing paediatrician again in a few months so she can officially not give a dx due to no one at school or observing at school seeing a thing.

Interestingly lady who runs local ASD social group which we are invited too, DOES see clear traits of ASD in DS... bless her.

mummytime Mon 24-Nov-14 16:00:01

Parent partnership shouldn't be making judgement, but should be advising and supporting you in seeking help.
I would go back to the NAS and get their advice on how to fight for help.

Babieseverywhere Mon 24-Nov-14 16:52:43

Without a DX I can't ask for help from NAS...I have spoke to them before and they said I was doing the right things but it has come to nothing.

The school Senco said their help is based on need only....DS has no need therefore will get no further help, even if he gets a DX.

When I mentioned this in an email? Senco said they were already using many asd techiques with him (despite having no need!?)

I am looking for ways to address his anxiety and stress after a hard day at school.

StarlightMcKenzie Mon 24-Nov-14 17:03:28

I don't think you can do this outside of school. Children spend half their waking day in school. Most of 'life' happens at school as home is spent processing the kids (washing, eating, dressing) leaving little time for targeted social skills practise, not to mention the deficit of available children to use for the practise.

I think you need a respected private paed opinion. I know that it is expensive but you will save that money in terms of not having to replace broken windows and furniture.

Your plan needs to be long term. It needs to include a move of school.

mummytime Mon 24-Nov-14 17:13:25

Of course you can get help from NAS without a diagnosis, they are there for people who are on the journey to diagnosis as well as those with one.

He has needs in school: "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. "
And "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."
And "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."

School is not just there for the educational needs of children.

Go through his reports with a fine tooth comb, pick out the other "needs" your son has.
From what you have said at a very minimum he needs social skills training.

Babieseverywhere Mon 24-Nov-14 17:29:32

There are no better schools in the area...the only other village school is double the size and the stress of moving...I can't do it to him. TBH the issues will only follow him iyswim.

He was hitting me on the way home today. I had to punish him with 15 minutes no computer time, as violence is a big no no.

I asked about his day, nothing. I asked if he played with child with SN who hits him and he said yes, X us his best friend. I suggested inviting X home for tea, he froze and shouted No Thank you.

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