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Posted by 1 girl and her big dog (U13763979) on Tuesday, 9th November 2010
Just wondered if anyone could tell me where i might find out what is considered 'normal' for a 12 year old, in terms of prompting required for washing, brushing teeth, changing their clothes etc, making friends and joining in activities and also needing to be accompanied on unfamiliar journeys?
DLA forms say the child must need more help than other children his age, but how do you find that out?
My son needs much much more help, supervision, and encouragement than his older sisters did at his age, but can i just assume that they are 'normal' and make the comparison with them?
any assistance would be most welcome. 1G
Posted by foobabe (U10565341) on Wednesday, 10th November 2010
Has your son recieved a diagnosis for any condition that you prompt you to complete a DLA form? This would help in answering your question.
My twins both have AS and require ALOT of prompting and reminders both at home and in school. They have problems multi-tasking (taking after Mr Foobabe I suspect!) but can be hyperfocused when they choose.
Posted by Sofie2 (U14259204) on Wednesday, 10th November 2010
They have problems multi-tasking (taking after Mr Foobabe I suspect!)
It has been suggested that I have AS and I was talking to someone who has AS. I mentioned that I'm unable to (in lectures, for example) listen and write at the same time. She said that people with AS do have problems multi-tasking.
Posted by 1 girl and her big dog (U13763979) on Thursday, 11th November 2010
Hi, he does NOT have AS. (as per CAMHS), Though he does have some autistic tendancies. (but who hasn't), G&T reg, maths & science. Dyslexia, but very high functioning, so not requiring help(!), Odd pen grip. Not yet screened for dyspraxia, as OT wait is up to 1 year, IF they even accept the referal.
Very hypermobile, flat feet. Very placid baby. Medical doctor spoke of children with overlapping AS, ADHD, Dyslexia, dyspraxia.
DLA says it's not the diagnosis, it's the way it affects you. does he need a solid dx to get DLA?
Posted by Sofie2 (U14259204) on Thursday, 11th November 2010
He doesn't even need a diagnosis to get DLA. They couldn't care less what his diagnosis is - all they're interested in is does he have more care and /or mobility needs than the average 12 year old?
How does being hypermobile and having flat feet affect him? Can he walk with no problems? Is his balance affected? How does being Dyslexic affect him? Can he take a telephone message with no problems? Are you able to give him directions and he gets to his destination safely?
Posted by foobabe (U10565341) on Thursday, 11th November 2010
You can get DLA without a formal diagnosis, you will need to put alot of detail into it. It might be an idea to inculde supporting evidence and letters from his GP and school about his difficulties?
These forms can be daunting, so its worth keep ing copies.
I have attached a link to some further guidance hope this helps:
Posted by 1 girl and her big dog (U13763979) on Thursday, 11th November 2010
Thanks for the replies. Sophie, He can walk ok, but has trouble in Games and PE at school, he's always last in runs, and last to get picked for teams, he is also overweight, which both causes and is a result of his lack of desire to participate.
No he can't take a telphone message and reliably pass it on.
He cannot follow more than one instruction at a time. For example, if i tell him to go upstairs and get ready for bed, i'll find him reading in his room. I then tell him to get his pyjamas on, and brush his teeth. next time ilook in, he'll have PJs on, but teeth not brushed.
Trying to get him a bathe is a constant battle. Aslo he's very literal, if i say have a shower, that's what he'll do, but he won't use soap, or wash his hair. The only way to get him to is to say, "get in the shower, and wash with soap", then call through the door, "wash you hair using shampoo" (otherwise, he'll wet his hair, but not use shampoo).
I know that lots of 'normal' boys this age avoid soap and water, but i feel this is extreme!
My daughter (14) has been allowed to go by train to the next city on shopping expeditions for over a year, there is no way i'd trust my son to. He has enough trouble catching the bus! Before we moved into the city, (in May), there were only a few buses a day out to our village, he often missed his bus. On one occassion, because the bus was at the wrong stand at the bus station and even though it had the right number, he didn't think to ask the driver if it was his bus. (i had to drive 20 miles to get him).
On the rare occassions he's left on his own for long periods, he doesn't eat or drink. Even though he is capable of making scrambled eggs, or heating up some beans.
On one recent occassion he didn't eat all day. i'd taken my daughter to see some friends, and he said he'd rather stay home. (school holidays). I left at 9am, when i phoned at 12 to say i'd be later than expected, he said he was hungry, so i told him to make himself something,and suggested a few options, when i got home a 4pm, he still hadn't eaten anything, or made himself a drink. even though there was plenty in the house he could have had. Needless to say, i now do not feel that i can leave him alone.
Thanks for the info and links foobabe. 1G
Posted by Sofie2 (U14259204) on Thursday, 11th November 2010
It sounds as though he may qualify:
- he needs a reminder to eat - many 12 year olds would just help themselves if they were hungry.
- when you tell him to have a shower, many 12 years olds would (well, I did) get in the shower, wash with soap and then wash hair with shampoo.
The easiest way to do the DLA for a child is to get a friend of his who is the same age and has no disabilities. You then compare what the friend does and what your son does. At 12, he should be able to make a simple meal (like scrambled egg) with no reminder.
The issue your son has with catching the bus, is a similar one that I have. I am also forever getting off at the wrong stop. (I only know when I'm there if there's a landmark or something - like when I go swimming, I know I have to get off when I see the bus depot)
Posted by mabel_piratesmol (U3147115) on Tuesday, 16th November 2010
Although DLA is awarded according to needs rather than on a diagnosis, they don't just take the parent's word for it.
You will need some kind of professional verification that your son needs more support than a child of his age could reasonably be expected to need.
What does the school have to say about him? Has he ever been assessed by an Educational Psychologist?
If you haven't already, it might be a good idea to ask the the school what they think - they deal with 12 year olds all day every day & are the experts
Posted by 1 girl and her big dog (U13763979) on Tuesday, 16th November 2010
Mabel, the school does not think there is much of a problem. He was screened for dyslexia there, and although his speeling is way below the other things, because he is above average in everything else, they say there isn't a problem.
However, he has been assesed by school doctor and speech and language, as well as having private dyslexia screening, which showed that his IQ is way above average, and so his spelling being 'average' is an issue. dyspraxic traits were noted too, as were organisational issues by the doc and S&L.
The only route for dyspraxia screening is chidlrens OT (with a waiting list of up to 52 weeks) and paying £150 to have it done privately.
Posted by emma friedmann (U14690136) on Tuesday, 16th November 2010
My son has Fetal Anti Convulsant Syndrome (FACS), He has Autism and various other developmental problems.
As far as washing goes. . . I still have to wash my 12 yr old boy because he doesn't wash properly. I feel it a huge invasion of privacy for him but if I don't wash him he will be a neglected child and have rotten teeth, and he would be surrounded by evil smells. This would limit his ability to have friendships, if or when he gets an opportunity.
Has your son ever been statemented by the education authority? My suggestion would be to contact Autism support groups in your area for tips on how to get the services your son obviously needs and also discuss with parents how they cope.
As for the DLA form - I'm sure someone at the support group will be able to help. If you need further diagnosis then your GP should be able to refer you to a Consultant Paediatrician or Psychologist for cognitive assessment.
If you were to get DLA - What would you use the extra money for? Do you need the extra money or would you just like an acknowledgement of support for the difficulties you have as a parent/family?
On a final note: Did you take any medication during pregnancy?
Posted by devine63 (U14166755) on Friday, 19th November 2010
there are at least two possible comparators you can draw upon: your son's friends / classmates [ask other parents or teachers of same age boys what theirs can do] and your older children (though it is hard to remember accurately what they were doing at the relevant age). If you make it clear to the school you are asking for their info / advice about self-care and HOME activities not whether he needs help in school, they may be more helpful. Schools tend to think only in terms of what is a problem to them in class, unless you remind them.
Your son already has one diagnostic label, more labels may or may not be helpful. For now why not just say on any official paperwork: he is bright but [if I understood you correctly] has confirmed specific learning differences (dyslexia or maybe dysgraphia as it is mostly spelling plus some dyspraxic traits.
"On the rare occassions he's left on his own for long periods, he doesn't eat or drink. Even though he is capable of making scrambled eggs, or heating up some beans."
To me (I'm a psychologist, I know the basics of what an Educational Psychologist does, but not fully qualified in that field so I am not allowed to diagnose] this lack of initiative is a clear sign that he might have executive function difficulties (other signs include difficulties in planning ahead, difficulties with switching from one task to another because he would rather stick to the first one; he might also struggle with understanding cause and effect and with sequencing). This could be associated with the specific learning differences you mention, but there are other possible causes as well. The main thing is how to develop these functions better than he has so far.
A few extra questions: can he cross a road safely and reliably? Can he find his way to and from familiar places without help? Is he able to recognise potentially dangerous situations and people (or e.g. is he too trusting of strangers?)
For now, if I were you, I would concentrate on describing clearly what he can do well and what he has more difficulties doing, and developing those skills and coping strategies, rather than worrying about getting more diagnoses / labels.
There are some coping strategies you son can be taught to help him cope with school work and he may find some assistive technologies useful when he is using a computer (e.g. some like mind mapping software, some find voice to text software helpful, etc).
I used to be a Disability Advisor in a University and we had quite a lot of students with these kinds of difficulties - usually they did very well, but they do best if their needs are planned for with care.
For coping at home: you will probably need to move more gradually to independence than with your other kids.
e.g. how about a water soluble pen - write a reminder list on the bathroom tiles to prompt him what to do in the shower (can be wiped off)
e.g. start now with basic self-care skills - how to use the washing machine and so on.
e.g. to start with you might leave him at home whilst you go out somewhere, but for a shorter period and maybe you leave him a sandwich ready made and an alarm clock to tell him when to go and eat it ....later on another time the alarm could be a reminder to go cook something and you leave the things he will need to cook out on the worktop...
I hope that helps,
Posted by inmyhead (U14548021) on Friday, 19th November 2010
My eldest son has dyspraxia and has organisational difficulties and planning difficulties. He too has flat feet and has social difficulties with autistic tendancies.
I have to keep reminders in his room to pack his bag for school, each day has a colour code to make this easier. I have to give him instructions one at a time and i brush his teeth after he does it to make sure they dont fall out! He still needs help washing his hair and gets very distressed getting his hair cut.
He is literal and likes routines. If things dont go to plan he doesnt think like we do, it wouldnt just react to the change, even if that did mean catchin his bus from a different stop!
Because of his inability to recognise danger and the fact he still needs a lot of care he gets DLA .
He doesnt do PE as he has trouble changing and loses everything that isnt nailed down. We got a lot of help with the forms and the school did help by filling in a supporting statement.
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