DLA feel like crying !

pregwithno4

How does this look now ? Is there anything ive missed, anything I shouldnt have added etc.

With a combination of pain, and the frustrations of life with Aspergers Michael does not settle well in bed.
He is repeatedly back and forth to our bedroom or coming down stairs to "chat" or "get a drink".
He is physically put into bed. Once retreated out of Michaels bedroom he is behind us and when spotted makes a
lot of noise messing and playing,
It can take anything upto 2-3 hours to Settle Michael into bed and off to sleep.

Michael then wakes repeatedly throughout the night waking parents and siblings and attempting to "play" as Michael has no
consideration for others of what the time at night may be.
If left to his own devices when awake at night, would put himself and others in danger he WOULD try and go out of the house,
he Will try and open windows and
jump out or open doors and leave the house wide open for strangers to enter or play with kitchen utensils and try
to gain access to sharp knifes.
Parents go to bed at 10pm but are repeatedly woken up by Michaels messing and "play"
Michael needs consistent night time monitoring for his and our safety, he also suffers with pain due to Perthes Disease
and this can be the trigger to him being awake or woken up, Michael is awake multiple times per night
either due to Aspergers or Perthes Disease where he requires pain meds and comforting and monitoring and takes 30-60 mins to
settle back into bed this happens every night of the week.
Michael is given Ibruprofen as this is an anti-inflammatory and Calpol to ease the pain enough for him to be able to get back to sleep.


When outdoors (and indoors) Michael has no sense of danger will wander off and pull away if something is spotted he wants to see and check out,
We need to keep a tight grip on Michaels hands to stop him from being a danger to himself or others.
Michael will hit strangers, verbally abuse anyone without thinking of repercussions of his actions.
Will suddenly yank hard and pull away from us and try and run into the road.
Will approach dogs and other animals without thinking they could bite or be a danger to him.

When in shops he will Pull on shelves, try to climb up things and put products in his pockets not realising they need to be paid for.
Will Refuse to walk to school, sit on the floor and go floppy refusing to move, hang onto every lamppost and kick, scream, bite and hit the person restraining him.

The characteristic of a child with autism is that they may behave differently in the very structured environment of a school compared to when they are at home.
children at school have to be almost continually supervised for the school to run properly, so we feel that Michael may not need supervision over and above that which is normally given to all other children while attending school.
However, Michaels disabilities need supervision beyond that needed by other children when outside school or in the school playground
in order to avoid substantial danger to himself, his family and other people around him and it is that supervision which needs to be considered when deciding entitlement.

We have spoken to national autistic society and its very common for children to be self contained at school
in lesson and have meltdowns at home.


Although school have no major concerns in the classroom, the classroom is a very structured environment which is continually supervised.
His head teacher and classroom teacher have major concerns regarding his behaviour outside the classroom, in the school playground and
towards pupils and staff in the school.
Michael is aggressive both physically and verbally with others around him in the school environment and has come home on a number of
occasions with incident forms from the head teacher, outlining Michaels behaviour and his concerns regarding his behaviour.
He is concerned that Michael cannot recognise that physical violence is not an appropriate way of dealing with incidents
involving other children and this is because of Michaels lack of understanding to other peoples thoughts and feelings and his lack of
being able to read other peoples emotions.
I feel that his behaviour outdoors , which is a very big part of school life, 1.5 hours out of his 6 hour school day is spent
outside in the playground and this has been disregarded when considering how Michaels Asperger's, affects his school life.
I have sent reports along with a letter from his head teacher outlining his concerns.

We also would like to add school day is not a full day and care component should be judged on a child's supervision and care needs
over a full 24 hour period not just 6 hours of school.

NeilCr

Is there any way you can get to a CAB or advice centre to get some help?

I complete PIP forms and the face to face interaction with the client is a great help as you can ask questions/discuss the situation etc. Doing it on a forum like this takes that away

Lanzarote1938

If he wakes because of pain every night perhaps you could discuss with his GP giving him analgesia before he goes to bed.

atrixblue.-MFR-.

DM's know the regulations and guidelines on care component criterion.
i would leave out that they should consider a 24hour period and not just 6 during school hours. Its as if your saying they know nothing.


Your on the right track, all you need to do now, is identify what else you wish tomake a factual point about. and be to the point in you response.


such as dressed and undress.
State how long how often.
be brief about what happenes and your on the right path.
E.G
Sensory issues: Aspergers: Does not tolerate tags or lables, refuses to wear anything with them attached, makes clothes shopping impossible as wont try on clothes or trainers.
Does not like the feeling of clothes after a bath refuses to get dressed, walks around naked until the heightened feeling of clothing subsides.
How often? 2 times a day How long Each time 30-60mins sometimes longer depeding on pain levels along with Asperger sensory issues, it Varies hour by hour or day by day.


and so on.


please come back and let us know how you get on when after your MR decision.

Tigsteroonie

If his autistic behaviour is part of the reason why he will not walk (i.e. a mental disturbance is causing him to refuse to walk) then take a look at Cerebra's guide to DLA, as they cover this quite well in their advice.

Mammaof4-boys

Hi everyone I'm just new to here,but have to compliment atrix blue on their very helpful and honest help with dla.I myself as a parent are experiencing the joys of trying to claim dla for my son.

atrixblue.-MFR-.

Sorry to bump this old thread but intrigued to find out what happened is there an update to this OP.