unavailable 2

the social worker has been observing my daughter at times of day picking up the patient phone, and then hanging it up. she took the time to ask my daughter if she wanted to call mom. my daughter nodded her head yes, and this began the 3 pm check in with mom phone call, that has helped my daughter remember i'm still here and ok (which is a worry of hers and at times will wail and cry, when this happened they got her M&M peanuts and helped calm her down).

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walking through the pharmacy area of the grocery store yesterday, after picking up the dog's seizure medications, my cell phone buzzed in my pocket.

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"hello!", i answer, seeing it said "unavailable", and noting that it was a little after 3pm. silence and a couple of words lets me know it's in fact my daughter, who will often say nothing, but i hear her say "yeah" when i ask if it is her. so, i ramble on about how her day was going, and reminding her that the next day (today) we would be going out again, so to think about what she wants to do.
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"...and we can walk across to the dog park...", i was saying when the social worker laughed and said it was her on the phone now. my daughter handed it to her. we laughed, as i told her now she can see how it's been for years, i just talk and ramble and engage my daughter, even on the phone. i thanked her for making these calls and helping my daughter have consistent schedule.

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then she tells me she tried on 3 pair of jeans from their clothing room until finding the right size. we both knew that was a big deal for the patience of trying on clothes. she said she has been taking her to the clothing room for independent choosing of clothes (until she can keep track of her own clothes this is how it's working, otherwise anything i bring in is lost to the main laundry chute never to be seen again, outside of hospitals, my daughter is able to keep track of her things).
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she told me how she has been going outside in the morning for fresh air break time, and how she has plans to take her to the on site museum and library and other things that might interest my daughter, all the while keeping mindful of the things i've been telling her about my daughter's interests. it is the first time in a hospital setting, that anyone has given my daughter personal attention this way and i thanked her for it. they have given her little jobs to do on the ward, and they are observing her to see what job on the site she can do to as they call it "feel competent in something, to boost her self-esteem".

there are other facets of her care we are focusing on as well, such as discharge plans and making sure they really do help find the appropriate housing and the out patient neuro-doc, but this is important too, they are helping her find a place in the world where she is at in the hospital, and then adding the standing order outing times with me, my daughter is doing good. everything builds as layers, and giving a patient an individual plan and time spent with a patient this way, is proving to work well, as we see my daughter respond positively to it.
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looking back to how this part of the journey began in the other ward, where the other doctor wouldn't acknowledge her PDD or non verbal presentation, and yelled at me the first day i met him that visitors were not present on the ward except where he said they could be and for how long and what time of day---well needless to say this situation improved because we had to write letters and the advocate pushed and pushed for the fresh air break, which gave the change in wards and the new treatment team. i think it's important to note that there are so many wards on this hospital site, that it's a gamble and a bed opening availability as to where you land. some patients are not so fortunate and land where they do, without family, advocates or people taking an interest to help them move forward and discharge appropriately. i've met these other patients, several lived with my daughter at the past residential, several are same ones i've seen for 4 years in and out of these last 2 hospitals. i know if they each had an advocate the revolving door hospitalizations could stop.

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i wonder what she will want to do today, on the outing. whatever it is, i know i'll be smiling.