the outdoor time

i inquired about her going outside at the other ward, wrote letters etc and the result was according to a social worker i'd never met before, phone call on the 11th of january, she was being moved to a ward that would:

1. offer her outside time to play and get outdoors

2. "acuity", said that word and said that more staff on that ward will be able to accomodate her high needs.

Upon arrival to the new ward and every day since being in the new ward, i have never inquired to any staff about her being taken outside.

i allowed the process to take care of itself, obviously, i am not in charge, the ward change happened and one at that point assumes if the reason given was to go outside, then it would happen.

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How yesterday went

we have visited at various times on this new ward, waiting for group times to be over, generally during the week have been there anywhere from 3:15 or 4 or 5 pm....not once before yesterday's announcement at 4pm was my daughtered offered to go outside with me present there.

for the staff to say she'd been out twice, obviously there are more hours to the day when i am not there, but yesterday i was told it's always a 4pm fresh air break.

i clarified this with the person, so that we could in fact write this down for my daughter so she knows a schedule etc. remember this is not about pleasing me, or making "the mother happy". i want my daughter to have basic care, and it took far too much to get this far.(no where)

because, i never spoke to this new ward staff about outside time, it was clear, that they'd heard something from "those higher ups", and honestly, yesterday felt like a mockery of the whole thing, a circus act where not one person had the same answer.

the outdoor time that was unknown to us, and never happened when we were there before, suddenly rushes in, shoes are not to be found, small size one pair is found, tells us one month before other size can be found, interrupted my daughter who was coloring, using play doh and eating a treat spending her one hour a day with her family--all people opening the door, saying ,hurry up, go outside, oh now its too late, oh wait someone else will take her out hurry up we found your slippers.

i mean it was unbelievable grandstanding. my daughter, packed up her new activities we brought her and stacked them on the table and just sat there.

whether these people understand autism or non verbal is quite apparent, the answer is no. i'm not expecting people to know. what i think was obvious though, is a patient is high need, non verbal, and no matter what anyone does, you cannot make her into what she is not.

she needs time to process, to hear what's been said to her.

write it down.

be patient.

give her a 10 minute time annoucement, "hey linds, in 15 minutes it's outdoor time, get your shoes on and get ready". it's that simple.

but they rushed in, gave no time for her to stop what she was doing, gave her 2 minutes to get ready and SHE DIDN'T HAVE ANY SHOES.

Please, stop making this about the person who is advocating, and helping others to understand how to work with my daughter. i am a support for her and anyone around her, and can, in a very short meeting, give tips like the ones above on how to work with a basic autistic childlike adult.

She CAN do independent things, she does know how to use her key and lock for her cupboard, but something was broken on it yesterday so the staff had to open and close it. this caused me another concern: can she get to her belongings now that she has new art supplies to keep busy? and her slippers...is that why she wasn't wearing them? she couldn't open her closet?

She's going to fall through the cracks here, if people do not understand how to prompt, ask her things and even write a note, or just observe her.

She is complex and i am not going to apologize for having a complex young adult for a daughter, i am sorry she is not a cookie cutter patient. she is an individual, thus the "individual treatment plan".

the staff also told me to bring her candy and snacks for 7pm snack time and they will keep it in a box for her.

that's great, but i hope they know at 7pm she might not be able to verbalize she wants it, i would hope someone would say, simply, "hey linds, want something from your snack stash box?" at 7pm.

it's getting to know the patient and it does not take much time to understand simple prompts and things work.

but yesterday, what a joke. i never saw anything like that before, and it was because they thought all i want to hear is "she went outside".

BAREFOOT? that's just great. i shake my head at this fiasco. something so small has turned into a joke, now we are on shoe topic. was entering with shoes how a patient goes outside?

i've never been asked to bring in shoes yet and she's there almost a month, i was told over 5 reasons why she wasn't being taken outside, and now i was supposed to bring in shoes.

she is their client, on medicaid and sent there by court order. you get the shoes, because she in your care. what about everyone else? this place serves indigent clients on medicaid!