In the old days, respite was called Valium (and some days it still is) but now there are programs that actually send people to your house to give you a break so that you can cook dinner or maybe go to a dentist appointment. A few years ago we put Kimani on a list to receive respite services and then we pretty much forgot about it. Also about three years ago, I learned about a PCA (personal care assistant) program that provides you with someone to do task-based services with your child. I signed up for that too, hoping that one of these programs would come through for us.
Last July the PCA program administrators contacted me to set up a time to meet us. Kimani’s name had come up on the list. After interviewing me, and observing her, they determined that we could have three hours per evening. All we had to do was find an agency to manage the payroll and find our own PCA to do the work. Easier said than done, but I put the word out to a local college that has a special education teaching program and crossed my fingers that some student would be interested in this part time job.
Then about two months later, I got the news that Kimani qualified for an unheard of 20 hours of weekly respite and I did a hallelujah dance all around the kitchen. When the boogie ended, I wondered if she could actually have both services since they are both covered by her Medicaid waiver. After a quick call to the county, I found out that the answer was yes, as long as there was no overlap. The program coordinator brought the respite worker, Lexi, to our house to do the orientation, and the following Monday she started.
All in all, she maybe showed up four times over the next few weeks. She was consistently late and constantly a no-call, no-show. But she did show up just enough times to steal our iPad and a $50 check my son got for his 7th birthday. The program coordinator was apologetic and Lexi got fired, and we were once again without respite (and down an iPad which has caused havoc between our girls). But a couple weeks later they sent a new girl. She was pretty consistent and actually changed diapers and cooked lunch. In time I felt good enough about her to make appointments for myself. Unfortunately, it always seemed that the day I had something planned was a day she also had something come up and couldn’t come in. I realized that respite is great, but it is completely unreliable and planning on it is a fool’s game.
In November, the college resource paid off and we got the phone number of a student who was interested in the PCA position. After a couple weeks of paperwork and fingerprinting, she started work. Immediately all my girls fell in love with her. She has a younger brother with Down syndrome, and she knows exactly how to interact with the girls—high expectations, clear discipline, and an approach that sees nothing odd about them. Her name is Eva, and I hear it now all day long... Eva Eva Eva Eva... they love Eva. Eva’s job is harder than straight up respite. She has to prep Kimani for dinner, provide one-on-one support while she eats, potty her, bathe her, put cream on her, brush out her hair, brush her teeth, get her ready for bed... it is a lot especially with a little peanut who won’t cooperate most of the time. Eva does it all with a sweet gentleness that must be a personality gift.
In the beginning of January our respite worker mentioned that she was picking up another job, and that she would have to limit her hours with us. She dropped to once a week for two weeks and then was done. We immediately started the process of getting Eva a second job with the agency that provides the respite service but these things take time. So for now, we are once again without respite. Hopefully in a couple weeks Eva will be all set up and can work as many of the 41 combined hours as she wants.
I can’t even adequately explain how awesome it is to be able to cook dinner while my husband actually relaxes after his long workday, without worrying that Kimani is going to break something or get hurt. Having Eva lifts tons of stress. Of course since she is a college student, we are on borrowed time with her, but for now she is the best thing to happen for us in quite a while. I am already fantasizing that we could take her with us to Disney when we finally get enough points to go.
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