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Hi, my name is puglover!

puglover

Hi guys I am a parent to two girls with autism both very different from each other but similar in some places one is 23 the other 10

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chiarieds

Hi @puglover - Welcome to the community & thank you for saying a little about your girls. I'm sure you'll find other parents here with affected children. One section in Scope is about Autism & Aspergers, so here's a link to it: https://community.scope.org.uk/categories/learning-disabilities-and-autism

If you have any questions, please just say.

Ami2301

Hi @pullover and welcome to the community! Please let us know if you need help with anything

Connie00

Adrian_Scope

Hello @puglover and welcome to the community. My two girls (aged 12 and 10) are currently going through the diagnosis process for autism, and while they're so alike in many ways, they also couldn't be more opposite in others!
How are you today?

puglover

Hi guys thanks for the welcome it’s really nice my girls are very different I think my eldest has PDA which is very difficult and as for my youngest as from today they are querying cerabale palsy as well at 10 !! Wow that was a shock today still reeling to be honest

Adrian_Scope

Hi @puglover,
It must’ve come as quite a shock. If you have any questions at all, feel free to speak to our specialist information officer - @Richard_Scope.

Richard_Scope

Hi @puglover
Good to meet you and thanks for tagging me into the conversation @Adrian_Scope

There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters.

The oldest person I have spoken to with a recent diagnosis was 68. I can understand that this has come as a shock to you and your family but I'm here if you need to talk

puglover

Wow yes it was a shock Louisa had all sorts of problems from 6 days old jerking etc that was investigated with a week in hospital that was all doom and gloom etc but was eventually put down to myclonus etc then at 2 years she needed investigating for lax joints etc after a small dislocation she got a hypermobility diagnosis then at 3 she was under investigation for centralised precious puberty and you guessed it yes she had it and commenced injections to halt it every 8 weeks until last Christmas when she decided she was ready to face it inbetween times she’s had OT to look at dispraxia as she kept tiping things couldn’t do buttons zips etc hop can’t tide a bike very well and gets marked down in ballet exams and finds writing hurts and has problems swimming and I did think recently with the “ my arms hurts mummy my leg really hurts mummy I need to sit down can we go home soon as I need to rest “ did she have ME or something ( I have it ) I’m getting louisas birth records it’s the one child’s I never made a copy of as she became so ill I never got the time before they took them back so I never read them ever!! All I know is that Louisa struggles with change she hates Loud noises or shouting ( 5 swimming instructors /clubs later) dogs barking babies crying distressed her she can’t watch a new film as it causes her anxiety as she thinks what might happen the suspense is to much and she can’t understand that they are not really crying it’s acting or they are not really locked up it’s pretend .. and she could bump into fresh air she often spills drinks or drops things her pencil grasp is still poor but her handwriting is neat but doesn’t have the quantity that’s required because louisa can’t be told off so she makes it all perfect no matter how long it takes maths is now too complicated and she now knows what the nazis did and that scares her .. she’s a loyal friend who would wait all day without question if they asked her to wait by a tree she did .. they forgot but she didn’t. She can’t wipe her bum properly she forgets simple things she gets so absorbed in fantasy games she’s created to the exclusion of all other things she would rather not do something if she didn’t understand it or what was required even though she’s done it before maybe but a long time ago .. and playing any sort of game like monopoly usually involves her crying as she can’t fiqure the rules out or doesn’t like them .. ok so there louisa lol I’d welcome any help or support on the CP side about it’s diagnosed etc .. Louisa has met all her milestones but at the very last minute if you get what I mean at 6 weeks old it was queried if she had CP as she couldn’t pull her head up when they held her hands etc but dismissed two weeks later when she did do it a little more we also took her to an cranial osteopath when she was 4 weeks old and he noticed her arm wasn’t coming up like the other one and did some gentle exercises with her as well as the CO for her comic and reflux poor baby had to be with me 24 hours a day or she’d cry and cry and couldn’t be flat at all I could go on and I’m bless her she is aware of the possible CP diagnosis but it makes me wonder as she’s seen so many “specialists” and it not be suggested ?? Anyway thanks again x

Richard_Scope

I think the important thing is to wait for a formal diagnosis. It can be hard not to run away with the 'what if' question. Once you have a diagnosis then we can discuss Louisa's potential CP. Are you receiving support for her Autism?

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