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This is an email I sent to Michael (Greta’s dad) on Tuesday, January 30 at 2:23 pm while I was at work. It was titled, "Greta Update".
12:04 – School secretary called me to say Greta had a pee accident on her way to the bathroom, and that the change of clothes in her locker are “springy” clothes [it’s winter in Calgary, and the forecast high was -16 C]. I assumed it was a pair of leggings and a short-sleeved tee, so she could make due for today. I told her we’d have staff send a new change of clothes to be kept at school tomorrow.
12:57 – Amy* [Greta’s teacher] called me to say that Greta’s change of clothes is short-shorts and a short-sleeved tee, no socks, and no shoes! The poor kid is complaining of being cold, doesn’t want a blanket, is getting stuck, and is saying she wants to hit. I told Amy I’d call to see if staff can bring change of clothes (one for today, and a second one to keep at school) and take her home.
12:59 – Called Mark [the new supervisor for Greta’s house] – voice mail.
1:00 – Called Theresa [staff at Greta’s house], she says she’ll call Cindy [the outgoing supervisor for Greta’s house].
1:06 – Cindy called me to say:
Staff will be there before 1:45 with clothes for her to wear today, and a second set (with a winter outfit and a more summery outfit) to stay at school.
They will act as if they’re leaving and school will aim to get her on the bus.
Staff will stick around in case that fails and, if need be, will drive her instead.
1:10 – Called Amy to tell her the plan. They were able to get G moving and she’s now down in the school office with Mrs. K [educational assistant].
2:10 – Staff arrived with Greta’s clothes at 1:30. Greta changed clothes, got stuck again, and refused to get on the bus. Staff were waiting in parking lot and came inside to get her. They drove her home without incident and she is having a nap now.
I share that email to demonstrate how complicated it can be to make seemingly simple arrangements for Greta; how even when I’m not directly involved, it can take a lot of time and energy to ensure her needs are met.
But this is a relatively minor example in the grand scheme of things. Something that literally illustrates the complexity of her care is a map I drew in 2013. (It is based on a similar map created by another special-needs mom for her blog.)
In this Care Map, each circle represents an area of care I’m expected to understand and coordinate.
As you can see, there are doctors, specialists, support workers, caregivers, researchers, administrators, and educators that I need to be knowledgeable about.
In addition, the red SCHOOL section and the bright blue HEALTH section often require me to proactively, and sometimes aggressively, advocate for Greta. That means knowing (or finding out) who the decision-maker is, sending emails, making phone calls, arranging (or demanding) meetings, gathering documentation, and so on. Basically, being the squeakiest damn wheel I can be.
Now with Greta being in an out-of-home placement (i.e. not living at home), this role of “coordinator, know-it-all, and advocate” is ever-more necessary. Because I am no longer physically present 24/7 as her mom, I work with Michael, the house staff, the house supervisors, and the school to ensure her care is everything it should be. I create detailed binders with Greta-specific behavioural and health information. I develop presentations for staff meetings (at school and her house), write proposals to request specific changes in her care that need to be approved by “higher-ups”, encourage and answer questions, provide helpful videos, initiate case conferences, and request additional professional help from her NeuroPsych Team when required.
I am not complaining. I’m sure there are things I could step back from, but I choose not to. My choice, my decision. Rather, I like to share this care map so the people who are on it can better appreciate how much is involved in parenting a child with such complex special needs. It’s a useful and impactful snapshot to help them see how they fit in, what an important role they play, and perhaps even how they can better support Greta and our family.
*The names of school and house staff have been changed to protect their privacy.