PCA means Personal Care Attendant. It is a person who comes into our home and helps me with the kids so everyone can get the care they need. It is how my back hasn't broken yet and I am able to do something besides sit in a chair and fight to feed kids all day long. My PCA's are invaluable. Diapers, feedings, projects, therapies, appointments, meetings play. Most of all, they help my sanity.
People have often made comments to me about why I had Cote even after I found out Bo had Special Needs. Back then I had no idea what was going to happen with Bo because I knew so very little about children with Special Needs. Keith and I were not trying in any way for a baby, yet we were blessed with Cote. We did not know what the future was going to hold, but I knew we would make it work somehow. Cote was my blessing. My pregnancy with her is what kept me from wallowing as I dealt with Gage's behavior issues, Bo's doctoring and Keith's deployment. I had to keep trudging on like always for the sake of my kiddo's.
Fast forward about a year and a half. We are now out of the Army and living in East Grand Forks. Keith is in the midst of going back to school and working almost full-time. I am alone with all three kids all day and night trying to make it to therapies and appointments and their Special Education Classes, as well as Preschool and Headstart for Gage. The stress of it all starts making all of my hair fall out and I feel like I am going to lose my mind. Then one day the kids' Social Worker asks if I would consider accepting help getting a PCA. I of course had never heard of this and knew nothing about it. I was so very wary of the whole thing. Letting someone else come into my home and help me with my own children? I couldn't wrap my head around why someone would come and help me with my kids. I felt like I had failed. At first I refused. I was ashamed. I wanted to prove I could do it all alone. That my life was not as bad people were worried it was. Then as the months wore on, I became more and more run down. I would spend literally hours in a chair fighting with the kids to eat. I bounced from one kid to the next. Gage was struggling because he got so little of my time. Finally one day after a comment a therapist made about how no one expected me to be superwoman, I caved.
The next day I called the kids' Social Worker and by the next week we had an appointment set up with a nurse for an assessment.
I did not know what to expect whatsoever. When the nurse came, I was surprised. We did not talk about the things the kids COULD do... we talked about what they COULD NOT. I was floored. I was having to say things out loud to another person, that many times I would not let myself think about. All of the things they could not do and all of the things they may never do. As a Special Needs parent it is so suffocating to even let yourself think these things, let alone say them. We went through question after question for each child and 2 hours later I felt like I was wrung out. To fight tears for that long is emotionally exhausting. Even though I was fully aware that the nurse was there to help me, there is a piece of you screaming out "Who cares what they can't do! Look at their beautiful faces and how sweetly they cuddle!!!" But those things are not the things you need to talk about on PCA assesment day.
We ended up where I received two hours per child per day, five days a week. It doesn't seem like much, but to me it was like being handed the Golden Ticket! I could have went with more hours, but I chose to pay my PCA a decent wage. If I would have went to minimum wage I would have gotten more hours of help, but possibly a less than helpful PCA.
Last year came time to do it again. Same thing, but different county. Same anxiety from me... same sorts of questions. Afterwards I felt the same pain and went into hiding (my defense mechanism of sorts)... just the same as the year before. Our Social Worker is kind as well as helpful and the nurse was courteous and thorough, but it is still painful just the same to speak of all of your childrens shortcomings. The kids ended up with 18 hours each per week this last year, at the wage I had chosen. I was able to let go of a little more stress than even the year before.
Tomorrow is the 3rd annual PCA assessment. Although I know yet again that this is all for the greater good, I dread the questions. I dread the answers that I know that I must give and I dread looking my children in the eyes after I say all of these things out loud. I dread Gage hearing them and I dread the parasite I will have to carry around the rest of the day, as I remind myself of all of the things they do beautifully.
I am keeping my fingers crossed that we will not have too many hours cut and I remind myself that any amount of hours we get will be better than what we could possibly be getting next year. This program will be one of the first to go, I found out, if a certain presidential candidate is elected to office. So even though it is going to be a tough day, and I wont be able to sleep tonight, I am going to be appreciative that the help is there for me. Even if it is just for now.
So I am going to end this with telling everyone... for a long time I felt like I didn't deserve help. That I had these children, therefore I should be the one who does it all. Then I found out that sometimes I just needed to let someone help me. I am not perfect and I am not super-mom. I am a human being.
If you or someone you know has a Special Needs child and is suffering from "burn-out" please feel free to contact me. I will help lead you in the right direction to talk with someone who would be happy to help you.
I think you are a SUPER-MOM!!!
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