Thursday, June 10, 2010

Our Yearly Reminder

It's that time of year again.  The time of year when the case manager from the Department of Developmental Disabilities comes to the house to determine the level of support that Haley requires.

After a whole year of celebrating little milestones and thinking that Haley is doing so much better I get an official reminder of how much assistance she really needs.

Haley is evaluated on her daily activities and the level of assistance she requires along with the family supports that we need.  As the case manager asks me the questions it becomes painfully obvious to me that Haley really does require a lot of assistance.  This is our life.  I don't question it on a regular basis, I just live it.  I have been thinking about what she needs a lot more lately (now that I have started this blog) but in general I forget how much she needs.

There are questions about her self care like; Can she dress herself?  No.  Can she bathe herself and shampoo her hair?  No.  Can she trim her fingernails and toenails?  No.  She isn't toilet trained, she relies on her family to change her.  She can feed herself, but does sometimes require help.  She moves around her home independently, but she does require assistance in new situations.  We understand what she wants (for the most part) but others would struggle to understand her.  She know that she needs money to go to the mall with her class, but she doesn't understand anything about money.  She can't tell us if she is in pain.  I don't let her go outside by herself because she would probably just wander away and not know how to come back.

The one that always affects me the most is the question about safety.  Could she identify and respond safely to emergencies.  I have to say no, I don't think she could.  I don't think about it on a daily basis, but if something were to happen to one of us or to the house I don't think she would know what to do.  I am not even sure that she would understand enough for us to teach her what to do.  I know they have safety drills in school, but I don't know if they really mean anything to her.

The case manager asked if she had ever indicated to us that she needed assistance.  I told her that the only incident I could recall was when the computer crashed and she stood at the top of the stairs and said "Help."  We were encouraged by that, but in comparison it is really nothing.  I started wondering if we should have safety drills here at home.  What if I pretended to pass out with Haley in the room with me, I wonder if she would find her Dad or her sister and ask for their help.  It really makes me wonder.

Haley is in good health.  I am thankful for that every day.  The case manager went down a list of medical issues and asked me to indicate if Haley needed support with any of them.  It was quite a list.  I was very thankful that we don't have medical problems to deal with, some parents do, and I feel for them.

The last series of questions have to do with me.  They want to know if there are other care givers available.  Well, there is my husband and my other daughter.  On occasion I have asked one of the teenagers in the neighborhood to watch her for a couple of hours so that her Dad and I could do something with her Big Sis.  We don't have family in the area, but if her Dad and I want to go somewhere for a couple of days we have asked her grandparents to come and stay with the girls or we have taken the girls to their house.  They want to know if raising our daughter causes us undo stress.  A couple of years ago when Haley seemed out of control that was starting to be an issue, but any more everything seems to be fine.  Our family is happy and stable.

So every year at this time we are reminded (officially) of how difficult our life is, but we are also reminded of how truly blessed we are as well.

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