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SN children

Here are some suggested organisations that offer expert advice on special needs.

Please look at this list and tell me what you think

36 replies

Skylar123 · 14/03/2014 11:15

This is recent list of ds behavours. Its a bit rough but most of the detail s there. Can you let me know what you think - all pretty normal, cause for concern? have other lists for toddler and baby both of which i did 3/4 years ago. Sorry its a wee bit long!

Thank you in advance.

Fixation on Star Wars

Previously Harry Potter for many years to the extent he actually thought he was HP and insisted we all called him ‘Harry’

Talks non-stop about it all day long

Will ignore question/conversation when spoken to and begin to tell you about it

Wants to play it on the computer/phone all day long – will not break easily including to eat and toilet

Interrupts conversations to change to this topic

Gets frustrated if not heard or responded to.

Very focused when playing this game using computer or phone but does not sit still, will crouch on toes and rock back and forth slightly.
Never gets tired of it
Takes what happens in the game very seriously

Repeats wording from the game off by heart and in length

When not focused in this way he becomes less focused and has daily bouts of being hyper which consists of running around in a manic fashion, climbing dangerously, emptying cupboards to find things, becoming very agitated or edgy

Watches the same episodes of a cartoon over and over including certain scenes

Will rewind and forward as he needs to

Gets very cross if he is interrupted

Frequently wants me to watch the same clip with him and will get extremely frustrated with me if i look away or i am unable to do it, so much so he will rewind it or pause it until i can do it or if look away he starts it again.

Will turn my head in the direction of the screen and hold it there

Asks lots of questions about what things mean ie words or actions

Will pause tv to ask me what face that is ie. confused, angry

Watches with subtitles and audio, audio a more recent thing.

Rarely relaxed, will either watch crouched and slightly rocking or upside down on sofa with head on floor.

When it is time to turn off or move on he has to perform a certain routine with the remote control, turning the tv off/over without doing so results in an explosion.

Very interested in the credits and knowing what characters real names are

Will always sit through credits

Becomes very attached to certain adverts, will run in to watch, learns the words to the advert off by heart and will repeat at random times throughout the day. Really likes ‘Sheila’ from the Halifax advert.

(Timers are used for both computer and tv time to allow DS to see how much time he has left to assist with his difficulties)

Runs water from tap often, puts hands and feet under tap. Floods kitchen and bathroom. Has got up during the night to do this

Makes references to an imaginary friend called ‘Aldo’

Can get very attached to older people and sees them as his friend when in fact we hardly know them or they are friends of his teenage sister.

Has got very attached to one or two girls at school who are much younger than him (reception class) and likes to ‘stroke their hair’. However i think the attraction was rather one sided as he tells me they run away or won’t speak to him.

Talks using a babyish voice often

Sometimes when spoken to he will giggle and pull a bizarre over the top smiley face

Gets very interested in facts that he may have come across and will tell anyone about those facts, shopkeepers, gp, neighbours.

Gives people new names some of which aren’t names but colours or similar

Very literal with language, doesn’t get jokes or sarcasm, words with different meanings than which are obvious.

Very literal when pointing out someone is fat or of a different race, smelly, smoking, spotty.

Has great difficulty expressing how he feels

Finds it easier to express himself to me in a drawing

Advanced vocabulary but lacking with conversational skills

When I am cross with him and on his level telling him off he giggles and covers his face awkwardly

Says that he is rubbish and can’t do the things other children can do ie. handwritng & maths.

Licks objects mainly radiator and banister (used to be windows)

Always puts lego in his mouth and says he is trying really hard not to swallow it

Says he has ‘bad hands’ when he does things like strangling

Has to 2 sides to him

Can have a huge meltdown and then once over he returns to being very sweet

Makes a funny squeeling noise randomly

Nervous twitch in one leg, vibrates

Looses sense of balance when walking and walks on heels, sometimes slightly, other times completely

Asks me question after question and repeats himself

Has one real friend, since year 2 (a friendship that was encouraged with help of class teacher noticing DS needed some social help)

Will only play his game at school.

Plays the same game, this is based on star wars where he copies the game character from the game

Will not join in with someone else’s game

Gets distressed if friend cannot be found or doesn’t want to play his game. Friend is very kind and accommodating towards DS.

Has difficulty asking for help from an adult

I asked DS if he misses seeing his friend when not at school he said ‘no, i can see him in my head anytime’

Has frequent meltdowns at home relating to school

Always comments that he feels ill before school

Low self esteem

Doesn’t like large crowds or sudden loud noises

Will not go to school ‘fun nights’, would just stay with teacher and not join in

Finds it hard to personally approach someone and know how to get their attention

Does not join in at family parties prefers to sit with grown ups, if noisy he will sit alone in a quiet spot

Will not go to the park at home and play with others

Likes to build lego from instructions and gets very cross if anyone touches it, moves it, accidentally breaks it, even the cat

Sometimes he gets off pieces of lego out and lines it all up in a huge line across the floow

Makes lists of now and next

Likes to go through putting things where they should be before bed

Lists facts he wants to remember about star wars and actions to make in the game

When talking he will miss out words (usually the last word), he will replace the word with a clap of his hands, so ‘ can I have an ‘clap,clap’ instead of ‘can I have an orange’?

Will also spell the word out in the air rather than say it

Petrified of the dark and flying insects

Doesnt react when he really hurts himself but gets very obsessed with small cuts and grazes

He is very close to the cat however when we lost her, he was very carefree and told us ‘if she’s gone, she’s gone’. Wasnt the slightiest bit bothered.

Has no concept of time, ie yesterday, tomorrow, next week

No longer sits still and listens to storytime before bedtime. Talks over me, asks questions about what I am reading, fidgets, gets up to run tap, put things in place.

Never ever liked or enjoyed being at school/nursery

Lately he has become so anxious it is extremely difficult to get him in

Panics about having to go to school

Less anxious during holiday time and weekends

School is the first and last thing on his mind each day

Doesn’t like playtime or eating lunch at school, learning is hard

Commented that ‘he thinks it’s just him that doesn’t like school, the other children do’

Lay in bed one night and told me ‘somethings not right about me mum’

Needs reminding and prompting to get washed/dressed/eat dinner/leave house

Stares blankly, expressionless

Will not wipe himself

Doesn’t wake up to use toilet – wets bed

Hates wearing socks - always removing them

Fussy eater

Persistent bowel problems

Does not like change in routine, planner is discussed in advance.

No reaction if someone hurts themself

Cannot ride bicycle despite numerous amounts of trying at home and with school

Poor scooter balance, cannot operate the back foot and glide at same time

Thanks
OP posts:
Skylar123 · 14/03/2014 19:49

Yes I think that's the next step

OP posts:
Skylar123 · 14/03/2014 19:54

polter does Ds need to be under camhs for referral to maudsley. Camhs have seen Ds once and said all behaviour is down to ASD. Can't help. Referred back to autism advisory and said once nhs dx something like CBS ?

OP posts:
PolterGoose · 14/03/2014 19:57

This reply has been deleted

Message withdrawn at poster's request.

trulymadlydeeplyunlikeable · 14/03/2014 20:24

Skylar Nearly all that list describes Ds3 (8). His Dxs are Asd, dyspraxia, spd, hypermobilty and low tone. No problems in school though. Hmm

Skylar123 · 14/03/2014 20:47

Thanks polter and I think I got the CBS thing wrong but I can't remember what she said sec had a C and a B in! Brain is numb.
truly thanks. No problems in school as in school not seeing seeing signs like at home and elsewhere?
My Ds is petrified of breaking school rules, very interesting.

OP posts:
Skylar123 · 14/03/2014 20:52

I am going to get on to Maudsley and failing that GOSH.
I really think Ds won't get a dx but unless he sees one of the two above or very similar I won't believe it.
I can't see him scoring too low on ADOS but even then I have a feeling it won't be enough.
My gp is brilliant if it's a gp referral I need it will
Be fine on the other hand if it's the paed it may not be unless I can see the other paed that sees Ds on spectrum.
Will see, thanks for all your help everyone.

OP posts:
Ineedmorepatience · 14/03/2014 21:42

I think a DISCO assessment might be more helpful to you than ADOS tbh. Looking at your list again, so many of those things came up on the DISCO. Its just finding someone who will do it that might be hard.

It was specifically written for those who are hard to diagnose.

Skylar123 · 14/03/2014 21:49

Margo sharp does DISCO I think but I do to want to pay for another dx . Ds has already met cut offs for autism with ADOS less than a year ago but I see what you mean about the DISCO

OP posts:
trulymadlydeeplyunlikeable · 14/03/2014 22:48

skylar EP says complex needs. He's very eager to fit in and not stand out, will follow others if he hasn't understood the information and is quite good at putting strategies in to get around things. School just don't see it or don't want to. really frustrating when we have to pick up the pieces every night.

Skylar123 · 14/03/2014 23:09

Thanks truly was that a private EP, did he observe at school. What about other profs who have observed at school, such as autism advisory, do they agree with EP?

OP posts:
trulymadlydeeplyunlikeable · 15/03/2014 09:37

LA EP observed at school on several occasions. The problem we have is that each prof looks at their own bit in a very narrow way. Nobody is looking at the child as a whole, and so they each can minimise his difficulties and often give conflicting advice. Just received a NIL based on that - no need on it's own is severe enough. I would pay for private reports had we the funds, just for my own peace of mind now.

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