Help. That’s why I reached out to school a week or so ago for a meeting. We needed some help to successfully make it through the year. I was honest in my email and explained up front what our objective was; we were struggling to get Rosie to school due to multiple health issues and had a couple of classes that just weren’t going to work out because there wasn’t any work to make up outside of class. I was also following up on our December discussion to re-visit 504 plan recommendations. Pretty easy to fix.
If you’re on my personal Facebook, you know by now that’s not what happened. We didn’t really get help. In fact, we walked into a meeting where we were on the school’s agenda instead of ours. I’m not going to go bore you with all the details but I will say this. I am a pretty tough person and we’ve weathered a lot the past couple of years. I’ve fought with doctors, hospitals, insurance companies, and yes, school. I try to be diplomatic 100% of the time and see the other’s point of view but let’s be honest, it is my job to advocate for my child. I cried in the middle of this meeting and I cried when I left. Now that almost 24 hours have passed, I see very clearly why I was so emotional. Either they don’t really believe that my kid is sick or they don’t really care.
Before the blood, I used to think that everyone was compassionate. That most people were empathetic. Now, I think that both characteristics are rare. I think there are a lot of people out there that care about others but it’s in limited quantities. If it’s someone in their inner circle they may try to understand when something’s wrong, but if not it doesn’t really affect them they don’t care. That’s sad. One of the things that sets human beings apart from other mammals is the ability to love, care and relate to the emotions and trials of others. Unfortunately, there are some people who just don’t possess that ability and I feel sorry for them.
We just want a little help please…
I also feel that if you’re in a role dealing with children like a doctor, nurse, school counselor or teacher, that you should be a compassionate person. That you should try to empathize with the child’s situation even though you may not really understand or have experienced what they’re going through. Chronically ill children have a lot more on their plate than their healthy counterparts. On top of the fact that they feel poorly every day, they have to push through and make it to school. Sometimes just getting dressed is taxing. They have to focus on classroom within the limitations of their disabilities. And, they have to listen to all the kids in the hall tell them “they’re faking it.” They shouldn’t have to put up with adults that feel that way too and they shouldn’t be treated like their able-bodied counterparts.
I don’t believe that my child should be treated with kid gloves, but I do think that the adults that surround her and are in roles to help her be successful should attempt to understand her challenges. I think it’s part of the job. I also think that they have a legal responsibility to figure out what a disabled child’s school day should look like to make it work. But more than that, I think they should be caring people who can help a family work through a really tough time in their lives and if they’re not, I don’t think they should have any contact with chronically ill kids. Pass them along to someone else on the staff equipped to deal with them.
I was disheartened yesterday. Both of us left the meeting frustrated and hurt. Neither of us deserved to feel that way. We just wanted some help. Simple, right? Seems like nothing’s simple any more.