Friday, March 4, 2011

Is this "Moderate"?

I spent the entire day at a sleep clinic sitting next to Pumpkin while she had an extended EEG. And by all day, I mean we got there at 6:30 this morning and they started unhooking the electrodes at 5:45 tonight. It was a looooonnnnggg day!

Thankfully, Pumpkin handles stuff like this pretty well. Of course she hollered and screamed while they put the electrodes on her scalp. And she writhed and yelled when they took them off. But other than that, she just sat in the bed and played. I didn't even run the TV all day. I was smart and brought some brand new (to Pumpkin anyway) toys with us. She played with Mr. Potato Head for hours and hours! It was mind numbing for me. But we made it through.

I came home to 20 emails. One of them happened to be a from our agency social worker letting me know there has been a status change for Pumpkin.

I believe every child starts out being listed as "Basic" where we are at. From there, our agency has us keep a log for the first 30 days. We have to list out Rewards, Discipline and a description of the child's Behavior and Mood. This log, along with medical information and recommendations from social workers, gets sent to an independent agency that assigns the official "level". There are three: Basic, Moderate and Specialized.

Each level is supposed to represent the kind of care the child requires. Each level also pays a different per diam.

I am not concerned AT ALL about the money. Honestly, if I was doing this for the money, I wouldn't have been able to sit in that room with Pumpkin all day today. My family is fostering for completely different reasons. My husband and I believe that God called us to this mission. We went through all the training. We opened up our lives to full background checks. We filled out an exhausting amount of paperwork concerning our history, how we parent, the status of our marriage, and more. We will deal with all the complete nonsense of the system. We are in this for the long haul.

Caring for Pumpkin is extremely easy and extremely difficult all at the same time. When I filled out her log, I was honest. Pumpkin is mellow and easy to care for. They wanted to know about her behavior and mood and I was honest.

But the reality is...Pumpkin is really, really difficult to care for. But it's because of all her delays. Not because of her "behavior".

Pumpkin can walk around the house OK enough. That's because she can hang on to furniture and the walls. As far as "community" distances go, Pumpkin HAS to hold a hand to walk. And when she does it is painfully slow! Or, she has to be held. Pumpkin is 42 pounds of dead weight.

Pumpkin cannot follow commands. At best, it is an emerging skill. If you tell Pumpkin to "sit down" she will repeat "sit down" two or three times before she slowly sits her rear end down. It's the same thing with "lay down, come here, go to the bathroom, go upstairs, go to your room" or anything else for that matter. Forget about asking her to put things away or to get things for you. This isn't a big deal in the grand scheme of things. It is an emerging skill and she is showing progress. But you have to count on tending to Pumpkin as being a very slow and tedious process. Or count on moving her around like you do an infant.

Pumpkin cannot do any self care. Nothing. She can't dress or undress herself. She is completely unaware of whether or not her diaper is wet or soiled. She can't wash her hands, brush her teeth, or do anything else. In fact, she only feeds herself about 75% of the time.

Pumpkin has a vocabulary of about 50 words and phrases. She does not use language to communicate her wants and/or needs. This lack of language alone makes taking care of Pumpkin a guessing game at all times. What does she like? Is she hungry? Would she like a drink? Honestly, she could so easily be abused in this area because it would be easy to neglect her or treat her differently than what she deserves.

Keep in mind through all this - Pumpkin is over 5 1/2 years old. She is not an infant but her needs are similar to one. She requires a lot of nurturing and you have to be prepared to do it expecting nothing in return from Pumpkin. (Sounds selfish but it is tiring to care for someone that does not reciprocate emotion.) Along with all of the above developmental delays, Pumpkin has extra medical needs. She sees a neurologist every two months and could easily be hospitalized if her epilepsy is not under control. As soon as the paperwork gets through, she will also require physical, occupational and speech therapies. I have no idea if these therapies will happen during the school day or if I will be responsible for transportation. It could end up eating a lot of time out of my weekly schedule.

So, I'm asking the foster care community - does Pumpkin sound like "Moderate" to you or "Specialized"? (Thankfully they didn't come back with "Basic" or I might have just lost it.)

I asked our agency social worker the same question. Not because we want more money!! But because, if Pumpkin has to leave our home for any reason (even if it's just respite), I think she needs to be represented accurately. I'd love to hear how it works in other areas of the country and if you think I'm overreacting. (I can take it. Honest I can. I'm wearing my big girl panties today.)

I'm hoping there's an appeals process. I'm pretty sure there is. If so, you can bet that I will fill out the daily log differently this time around. I will better describe how she tolerates diaper changes and what it's like when she refuses to eat. To me, labeling Pumpkin as "Moderate" is the same as CPS telling me that she has a limp and developmental delay. It just doesn't explain the whole story.


Julie said...

I don't think she sounds "moderate". I think you are doing the best thing for her in advocating she be categorized as "specialized" b/c she deserves all the services and attention she requires. There probably is an appeals process... but you will most likely have to fight for it.

Cheryl said...

Ugh! You already know that I think she should be categorized as specialized. Hopefully you can figure out the appeal process.

jendoop said...

Our county does not determine level in that way. My last foster son was moderate because I had to take him to a special preschool every day. He was in that preschool because there were drugs in his system at birth.

The only reason I can see them denying "severe" is to think about what the most severe would be. Think about a child with medical issues and behavior issues, sexual acting out, running away, etc. could be seen as severe. Pumpkin isn't that. I think three categories just isn't enough. Our county/agency has 5.