Out of the blue...as I didn't complete the application (due to so many issues which is a whole other thread including my diagnosis of adhd as well) we have had an appointment for my DC's PIP assessment.
They have just turned 17. Diagnosed with asd and adhd in year 9 after a horrific struggle throughout the year at school. Had masked well through primary....we "sensed" there was something and in primary teacher advised that he felt there was def asd but she was managing/ coping so perhaps no need to follow up.
Anyway her world imploded at secondary, we waited forever for the CAMHS assessment and eventually the ASD diagnosis came through just as she was entering yr10 with her twin. She rapidly became a school refuser, even running away one morning at 3am because she couldn't face it (that is a morning I never ever want to live through again but the school's insistence that I was "pandering" to her by allowing her to refuse to come in just about sums up their lack of support or understanding).
She still "masks". The CAMHS nurse said it was an unusual obsession but one that he had seen before, where she obsesses over social interaction and "says" what she believes is the right thing but is often inappropriate or misplaced). She misreads social cues and is overly and worryingly trusting.
Lockdown saved her I believe. We were all at home. She was safe, surrounded by people that she loved and felt safe with including big sis (who she adores) home from uni.
I applied for PIP for her a few months ago. It may even be a year ago. I am unsure, I was manically busy at work, finishing my MA and going through my own diagnosis, supporting the twins through online learning and GCSE's and having completed a few sections time went by. I was thinking of reapplying for her when the appointment came through for her next week.
I have no idea how to handle this. I can't remember how far I had got with the application. I know they had details of people who had helped look after her and I presume they have information from them.
The letter says that DC can have someone with them but they mustn't speak for them. The trouble is my DC will mask everything. Without my input DC will not look after herself. She is better than she was as far as personal hygiene is concerned but, for instance, if she needs a shower I will have to get everything ready for her. I still have to cook and prepare her meals for her as if I leave her to it she will leave ovens on, food on the hob, the gas on etc. Her meals are also separate from the rest of the meals...she will only eat one thing for weeks on end and if I put something else in front of her she just won't eat. Believe me I've tried. For 17 years!!! So my focus is always getting enough healthy calories and nutrition into her as I can (thank goodness for milk and innocent smoothies). After an incident where she put herself into massive danger I need to be available to take her to places. Which means time off unpaid from work (they are sympathetic but have a business to run which I totally understand). She can't take public transport unless she knows the finest details and if, for instance, a train is cancelled or a bus doesn't run as planned she will panic and wouldn't be able to work out an alternative.
This is the tip of the iceberg as far as the support she needs. She was unable to attend college...she got in on a foundation level 2 course but as it wasn't what she wanted to do she was then again a flight risk and this time in a strange city with no social ability to be able to manage how to cope with that or make choices that would get her home safely, or at least to a safe place. (This broke my heart. She was so excited to be going and we went shopping for new clothes and shoes and she looked so nervous and excited to be part of a "grown up" world and we had some time of her slipping back as she felt that she was useless again).
I have applied for an EHCP so that we can get help to get her GCSE's up to a level where she has the college choice opened up to her again (she would be excellent at what she wants to do) or find support and alternatives for training or apprenticeships to do the same or similar. I have lost the child benefit that I received as she is no longer in full time education and I am losing hours at work to support her and help her. Again, this is all tip of the iceberg as far as her issues and the support she needs.
But it isn't obvious! And without my input she will want to come across as "normal". She won't stress what she needs. And if the PIP assessor asks anything that she feels uncomfortable with she will clam up. Then she may come across as sulky teen which mostly couldn't be further from the truth. She has never been sulky just withdraws right into herself if she is uncomfortable or doesn't understand the situation.
I want her to have this PIP to get her the help and support she needs to be the adult I know she can be. She seems to be in this "twilight zone" of SN where it isn't severe enough to be obvious but she is not able to process or manage "life" outside her bubble of security.
What can I do to ensure she gets heard at this meeting? Is there anything I can do to get the reality of her SN over to the PIP assessor without "speaking" for her? Is it too late to get some sort of action in place so that I can become her spokesperson? I want my child to be able to have a life but she will always need support and I want that in place for her without this support needing to fall on her siblings ever. In order to do that I need people to know the reality of her life and not the glossy version she wants people to see. She is a twin but is probably at least 2 years behind in emotional maturity now, and that is increasing as time goes by.
I am so very very sorry that this is so long. There will be loads I missed out but any help and advise would be gratefully received.