Hi, I have a 6 1/2 year old girl with spastic diaplegia CP. She is doing pretty well overall. She recently (in January 2011) had bilateral femoral osteotomies (hip surgery on both sides), so we are still in recovery mode.
My question is, with the 7 medical specialists that we see out of town, on top of daily challenges with her, such as PT 3x week, only half days of school, no real daycare or child care that is trained with special needs children, and without a higher paying job to pay for any childcare, HOW do I go about getting an income without Emma losing all her one on one care? I work with her throughout the entire day, doing academic things for school, working with her left hand for OT, practicing walking, using her stander, stretching her muscles, massaging her muscles, helping her with daily tasks such as toileting (she's fully potty trained, but cannot get onto a potty) and dressing and personal care, doing exercises for PT, and then still trying to leave time for appointments, school, grocery shopping, playing and SLEEP! Currently, I am not working at all, and we are receiving SSI, but it doesn't even begin to cover wages lost being a stay home mom.
I find my options are limited. There are so many people who tell me "just get a day/part-time/regularly scheduled job" and work around it. But what about all the time I'm putting into Emma now (and it DOES make a differnce)? Do I just quit helping her so I can go to work? I believe that as a mother, it is my number one job to do everything in my power to give her the best shot at a higher quality life as possible. But at the same time, living without my income is hard. It may sound crazy, but since I've always been a hard worker and always provided for myself, now that we are unable to do anything extra because we have NO extra money, it hurts. Feels like I need to choose between my daughters quality of life or being able to ever do anything recreational again. Obviously, I will always choose my daughter. But I'm curious as to how other families juggle the extra needs of a child with CP?
Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.
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Hi,it's late to ask you the question but I'm really curious to know- at last did you get suitable decision for your child? It's pleasure to know you choose your child than work. I am sure you've got a suitable solution of this problem. So,I want to know about it.