Who knew that these two words would have such a different connotation for Ella than they do for us? Since Ella was approved for Medicaid, and the self direction program, each year we are required to submit a life plan in order to keep the funding.

I hate that they call it that, so Steve and I like to say we have our own plan for her life, and it is much more basic than her life plan. We want her to be happy. We want her to be healthy. We want her to be safe and we want her to always be loved. I think these are things that most good parents would naturally want for their children, and without having to list specific ways to make them happen.

When you have a child with special needs, things get complicated. In order to become part of programs and receive services you have to continuously talk about what your child needs, how these needs would benefit them, what the outcomes of these needs would be, and then set goals, on paper, for all the things you want them to achieve. You are constantly talking about deficits and restrictions. People ask you over and over what’s wrong with your child and preface the question by saying, start from the beginning. I wish I could hand them all a piece of paper with her medical history on it and be done. Nope. It has to come from your mouth and then is followed by a series of, what feels like, one hundred questions.

For instance, one of the goals in Ella’s life plan is to have friends. It is then followed by a timeframe and frequency in which this is supposed to happen. To me, making friends is a natural occurrence. For Ella, it’s something that needs to be written down and tracked. Does Ella have friends? Of course she does. I would bet she has more friends than CJ. (Don’t tell him I said that though.)

Some other goals listed are for her to be more independent, for her to increase her ability to express her wants and needs, and for her to be more involved in her community. All developmental goals any parent wants for their child, only in order for Ella to get money for self direction they need to be listed and tracked. These are goals that Dani works on every time she is here, and successfully I might add. I would bet most people don’t specifically think about such things, but I am sure are doing every day.

There is also a section in Ella’s life plan that includes safeguards. Things like needing proper supervision, feeling comfortable and clean, moving safely, needing assistance with hygiene, and how to safely evacuate in an emergency. Under each safeguard is a goal on how each one will be handled. So, for proper supervision, the goal is to have a responsible adult present at all times. For evacuating in an emergency, the goal is to have physical assistance. These safeguards all include frequency and time frame as well.

Additionally, there are paragraphs outlining Ella, her home, her work, her health and medications, her relationships, her happiness, and her school. Everything you might want to know about her is documented and categorized. It’s almost like a little biography of her life thus far, only suddenly it’s become part of her life plan, and not just a story about her life.

Reviewing this life plan yearly is one of my least favorite things to do. I am very grateful for the broker and care manger we have. They are so supportive and make the review go as seamlessly as possible. I just think it sucks. It sucks that every component of her life needs to be written and documented. It goes to the state for approval and all her business is out there to be read and evaluated.

When we get frustrated with CJ because he doesn’t do something we want, or get mad because he developed selective hearing and ignores us, we try and remain calm and remember it’s normal kid stuff. Then we think of Ella and her life plan. There is nothing normal about that.

I much prefer our plan for life and continue to hope, one day, that’s all Ella will need.

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