Help for child with Asperger’s?

SpiritDawnWolf

Hi all. This one is a bit weird, but here goes. My sister has been told that her 5-year-old son has Asperger’s and ADD (not hyper-active) by his psychologist (a home visitor that comes every tuesday). The psychologist has been visiting for what seems about 9 months now as my sister was finding the son, we'll call him J, was becoming more and more a handful.

All of you who have children with ASD will have also had the same problem as her and her hubby did earlier on, trying to convince people that the child was not 'just badly behaved' and the worst one 'It's down to the parenting', so you know the hurdles they had/will have to go through.

So now the hurdle: for J to be properly assessed as ASD they have been told they will need a form filled in from the school teacher to enable a personal attender (??) to sit in some classes with him to give full classification of his needs. However, until they get a form from the school that states this would be needed, the attender cannot enter the school. And the form is being filled out by the headmistress, NOT the teacher (who agrees he needs further testing) and the headmistress is stating J is fine and no help needed.

She has even stated to my sister (who was in tears in her office) that if she fills in stating that once child needs assistance, then this goes against the school record and she does not want to tarnish the record by showing she has 'disruptive/special' children attending. From this, my sister is contemplating moving all 3 children from that school to another one a bit further away.

I've said to my sister she should be able to get some form of benefit or allowance to help with the cost of J, as both parents are unemployed, on HB & JSA, however they have to find money from all that to feed all 5 of them, but on top of that, J needs night-time pants for bed-wetting (not cheap, as most of you will know) and bus fares as when he wants to stop walking NOTHING will get him started again. He eats holes into the cuffs of his clothes (is this a normal thing?) so the school clothes have to be replaced. These are just a few things she needs to find extr money for.

However my sister does not want to make a claim (which she thinks she wouldn’t get anyway) as she thinks people will think she is just labelling her son to get extra benefits.

However even I have realised he needs extra time and help. Both my sis and her hubby are doing part-time college courses while the kids are at school to try to better their job prospects, but for them to take more hours they would need specialised care for J as a normal baby-sitter would just not cut it.

I experienced a full day with him on xmas day, and I know it was an action-packed day, but from it all I realise why my sister is on anti-depressants because she blames herself that she cannot control him. During the presents opening he got so bored after a half dozen presents and wanted to go and open his sisters' presents instead and stood and growled (yes, he growls and frowns!!) at anyone who came near him, until he was taken to another room by his dad for a time-out (hold him close like restraining but also comforting)

So, my questions would be: How can she get an attendant into the school bypassing the headmistresses wishes but without !!!!ing her off?

Is there any type of benefit to help with costs incurred with J's disorder?

Is it still classed as a disorder even if a doctor hasn't diagnosed it (again because the school won't sign a report therefore cannot be sent to a doctor)?

She feels awful saying he has ASD just on say-so of the psychologist if it turns out he does not have it and again feels people think she is labelling just a 'badly-behaved boy'.

Any help or advice appreciated as she feels she is going round in circles.

SDW

Notmyrealname

YOU DO NOT HAVE TO GO THROUGH THE SCHOOL TO GET THIS DIAGNOSED. This should be a process started by the GP with the school being the ones being informed by child psychologists and social services, not the other way round.

Tell her to sign up to the National Autistic Society forums. THere is a wealth of help and information about everything on there.

Chewing cuffs, necks of jumpers or shirt collars is commonplace but he should get out of it eventually. She will find he will go through shoes every 6 weeks or so.

DLA is a battle to get without a diagnosis and its hard enough with one - expect to appeal.

Every school HAS to have a SENCO. Make an appointment to meet the SENCO and get the statement done through the SENCO.

My sons infants school were absolute !!!!!!!s. Didn't want to know, were far more interested in punishing him. Even when he was statemented with a raft of stuff from paediatrics and child psychologists they still dug their heels in. Absolute !!!!ers.

Thankfully the junior school were the polar opposite and he got the help he needed. To give you an idea how crap the infants school were, when he started junior school he was behind by three years. He is halfway into his third year at junior school and now he has the support, he's less than 6 months behind in most stuff but in maths is ahead.

SpiritDawnWolf

Thanks for the advice! His teacher won't punish him, but hasn't got the time to spend individually with him.

Is the SENCO the person who sits in the class to see how he does? If so, my sister was told by the headmistress that they only have allowance for 12 HOURS of a SENCO per year and do not feel that J needs it. 12 hours? Is that right????

Prinzessilein

A SENCO is a Special Educational Needs Coordinator. They will usually be the head of the Special Needs department in a school. They will not necessarily be the person who sits in with a child - although they may also do this.

Your sister should be looking at a number of different things...

A diagnosis of Asperger's and ADD. This does not need to involve the school - but their input can be really helpful. The GP should start the process with a referral to a specialist who will conduct the diagnosis.

A Statement of Educational Need. This is usually (but not always) done at school. Your first step is to ask/demand to see the SENCO. You may need to be quite firm - but try not to get too stroppy! You say that 'J' is 5 - so early Primary School. Funding is a big issue here. Sadly, when I worked, I was told by a Head that one Primary School had a policy of delaying the statementing process as long as possible, hopefully until the child went to Secondary School - simply because of lack of funding. Those children who get most help are those with determied parents!

The Statement of Needs will state how much help J needs each week, and how this help will be delivered. It may include strategies for the class teacher, and also individual help. The Statement will be reviewed periodically. Your sister should be regularly updated on J's progress.

Your sister should then look at claiming DLA. There is no shame in claiming benefits to which you are legally entitled. One idea would be for her to keep a diary of what help she gives J, and what he needs at school - maybe over a fortnight. Then take this to the CAB or DIAL - they will be able to judge whether a DLA claim is appropriate.

She then needs to ask about Care'rs groups. She needs support - and sometimes just meeting with other parents/carers can help!

munchings-n-crunchings

Was the psychologist part of a larger team such as The Child and Adolescent Mental Health Service (CAMHS)? If so, then the psychologist could refer your nephew to a fellow team member to confirm the diagnosis, or to a paediatrician. The diagnosis is done slightly different in health authorities. I have both a son and daughter with Asperger's, and in both cases, neither school was contacted, it just wasn't necessary.

Sadly, it's often the case that any one to one support has to be fought for, and you could seek advice from the Parent Partnership for help in getting this.
http://www.parentpartnership.org.uk/

If your sister is seriously considering the option of changing school, there will be a lot of inside knowledge from professionals about which schools are particularly friendly towards children with disabilities. Whilst there are league tables, there will be schools that wish to protect their position, and my daughter went to a high performing school, where the children with disabilities just slipped away.

The schools attitude will make a claim for DLA-Disability Living Allowence difficult. As part of the application process, it's normal for the school to be contacted for a report on the child. And, in my personal opinion, I've not had a school that will put in writing, things that they are willing to say verbally, I believe so you are not able to then use this information to get further help and support. Any request for information would firstly go to the head teacher, so there's your problem.

Speak to the psychologist, and speak to your GP.
I kept a diary of my daughter's behaviour to take along to the GP appointment, to save the doctor writing everything down. It can all help with the diagnostic process.

What part of the country is your nephew? There may be folk in a similar situation in that area that can offer regional advice,

Regards
Munchie

DorsetGirl_2

My son has more of a 'classic' form of autism and he has some other issues too, but two things jumped out at me.

Nappies - I would ask your sister to speak to her GP (or school nurse) about incontinence service within the local health authority, we receive all of my sons nappies free. It took a while and the amount we get is limited but its the only way we can get ones to fit him.

Chewing. My Son does this. We have counteracted his need to chew (which he gets sensory feedback from) by giving him chewy tubes - look on ebay for them. They dont work for everybody but they have helped us and we dont have holy clothes anymore.

Are you sure its a Psychologist that comes every week, not a specialist teacher or a portage worker?

If you are having educational problems I would suggest your sister ring one of the SEN charities, like IPSEA or SOS SEN who may be able to point her in the right direction. Does your sister attend a local support group. For us its been the best thing we did.

Notmyrealname

I would like to add that we tried our son on Behavior Balance DMG from https://www.victoriahealth.com (based in Malton, North Yorkshire). Its basically certain vitamins put in a blackcurrent type liquid you mix in with a drink of juice - you'll find the heightened senses he has makes it taste too strong just neat. It has been tried by a lot of people on the NAS forums and helps in about 50% of cases. It helped our child and he was able to cope with things a lot better, was less violent and happier with the world. When we ran out, the infant school started reporting bad behaviour again. He doesn't need it now and hasn't done for over a year but it helped him through a bad time. Try it for a week. If you don't notice a difference within a week, don't continue with it.

* I spelled Behavior that way because its an american product and that is how it is spelled on the website