Because of a mix up (I still do not understand how it possibly happened and went on for weeks and weeks) Zoe did not receive any nursing support the entire summer. Normally Zoe gets 15 hours of nursing a week. This is arranged and paid for by CCAC (Community Care Access Centre). When Zoe was home in between hospital visits, she was very ill and required a lot of monitoring, medication, care, etc. I kept calling and begged for help. Literally, I started calling twice a week and begged. Finally, I asked the social worker and nurse practitioner for help. They made some phone calls to the right people and all of a sudden- bam- lots of support in place. We now have more hours/ support then we really need but we are taking everything they offer and will cut back once we have people trained and see who fits well and who doesn't.
The challenge of help- training people to take care of Zoe in the way that she wants to be cared for. I feel like if Zoe could use her voice she would have a lot to say to these various care givers:
-Although I am petite, I am not a baby! Please don't talk to me in a singsong baby voice! I am 11 years old!
-I see you are worried that I roll around on the floor but that is the only way I can move my body completely independently without equipment or people. I love to roll and scoot and play, please stop blocking me and taking away my freedom.
-You get upset that food falls out of my mouth when I am eating. Guess what- get over it! I have low muscle tone, food is going to fall out, I am going to get messy, and that is just the way it is. I love food, so stop wiping my damn chin and feed me!
-You get upset that I put toys in my mouth. This is a way that I interact with my world. I get a lot of sensory input from putting things in my mouth. In fact, if it was socially acceptable, I would love to lick and munch your face to get to know you better...
-You think I bit you when you were hugging me. First off- did you ask for that hug because I don't remember you asking to touch my body in that way. Second off- that was a kiss and you should be happy that I like you enough to give you some Zoe loving.
-Please stop preventing my baby sister from climbing all over me. This is how we play and interact. I am not so fragile that she is going to hurt me. I love being a big sister, so please just let us be.
-And lastly, stop complaining that I am heavy to carry. Perhaps you should get in better shape if you are going to help people in their homes. NO- we do not have a hospital bed or lift. Would you like to give us thousands of dollars to pay for those things? I don't like listening to people always talking about how difficult I am to carry, feed, care for, etc. Do you think I want to depend on you? I am trying my best, so please try your best and shut the f%ck up!
Hmmm, perhaps I should post these on the wall by Zoe's extensive medication list. I might want to change some of the wording though...
We are extremely grateful for any help that we get. However, all this help just started last week after an extremely stressful summer with no support. So Gavin and I are so exhausted from not having any help that we are probably less patient then we should be. It is just hard to allow anyone to be around Zoe who does not see what an amazing person she is and who respects her immediately. Yes, we will work with who we have and yes, they will get to know Zoe and hopefully change their interactions. But really- I wish Zoe could use her voice to just say what she wants since us saying it for her frequently falls on deaf ears.
PS We are looking to hire a respite worker, so if you know anyone in the Toronto area please let us know. We are the ones who hire the respite person so we are able to be more choosy and find someone who is a good fit. We have been lucky in the past and had some wonderful people in our lives. My friend Maria says, "The first thing I check is the attitude. If it's not good, then goodbye!" Sigh, if only we had more control in choosing the other people that come in to our home.
Waiting on Baby Kruck 3.0
4 days ago