Thursday, April 12, 2012

What went down. Being an Advocate.

I’ve come to expect phone calls. Honestly, I hold my breath when my phone rings when Jada isn’t with me because I know that that call will be about her. Ninety percent of the time it is. Really this post isn’t even about a phone call but I guess it leads me to think about how all the phone calls lead to us educating and advocating for our kids.
This is what went down yesterday.
In the process of telling me about her day yesterday, Jada admitted to throwing her glasses against the wall out of anger. She lacks impulse control so she is tending to lash out while angry these days. Anyway. I began to get her to tell me about the events that led up to her anger outburst. Jada’s tone was a bit escalated, confused with a hint of frantic, and upset. It was diabetes related. It was teacher related. It should have never occurred. The class was lining up for recess and Jada expressed feeling low. [This should be a no brainer right? I mean this one is easy. Have her escorted to the office to have her BG checked. Done. Certainly this is what happened, right?] Nope. Well sort of. Ms. Teacher apparently was in a bad mood and frustratingly spoke loudly at Jada and said that she better be low of she was going to be in trouble. [Yeah. I know. Really?] Teacher told the student that escorted her to find out whether she was actually low or not and come back and tell her. [Again. Really?] When Jada and student got to the nurses office, student told the nurse the teacher instructed student to find out whether Jada was low. Nurse does BG check and answered student. [Privacy laws? Um, where are they?] Turns out Jada was in the 100s. Student reported to teacher that Jada was not low. Jada expressed to the nurse that she was going to get in trouble by teacher because she was not low. Jada then returned to class to have the teacher yell at her (Jada’s words, and I’ve seen the teacher yell at other kids) and tell her that saying she feels low to play around is not ok but if she really feels low then ok. [Dear teacher, who are you to tell her that she doesn’t feel low. Are you in her body?] Then came the throwing of the glasses.

I was enraged (all internally of course). So many issues here. First. She feels low. Bottom line. She feels low, she gets checked. Second. Having another student be present and know Jada’s medical information such as a BG to report to the teacher. Third. Teacher telling Jada that she was playing by saying she felt low.

I emailed the teacher this morning and here is what I said:

While telling me about her day yesterday, Jada told me that you were upset with her because she felt low but actually wasn't low. There are various reasons that could cause Jada to feel low. Just a couple of these reasons include: coming down from a previously high blood sugar will cause her to have a low feeling, catching a low before she's actually low. Often times there is no rhyme or reason to some blood sugar numbers. Highs and lows can come out of nowhere. But it is important for Jada to feel like she can express how she is feeling without there being any consequences. I have not known Jada to use her diabetes as an excuse or reason to get out of things. If Jada says she feels low, then she must feel low. And unfortunately, the only way to verify her feeling is to take the time and check her blood sugar. If she feels uncomfortable expressing her low feelings, she may not express them which could lead to serious health risks including having a seizure due to a low blood sugar. I have talked to Jada about the importance of not saying she feels low if she really doesn't and I trust that she does not do that. I appreciate your help in this matter. Feel free to contact me with any questions.

As of 11 pm tonight I have received no response. I will follow up with a phone call tomorrow. I choose to email because I can simmer down my words. Advocating for Jada can get me a bit heated and I don't want my message to get lost in translation.

I sent a text to the nurse asking her to give me a call and she did. She happened to be the one there at this particular incident. She is the one that told me Jada was scared she would be in trouble upon returning to class and the part about teacher asking student to report whether she was low or not. I could tell nurse was uncortable about what went down as well. But she did allow student to know that Jada was not low to report back to teacher. That was wrong on her part. I expressed that that shouldn't happen. As it is, teacher received a report from nurse when Jada is in office being treated with a low. That's all that needs to happen. I told nurse that Jada actually did get fussed at for not being low and she shared the same concern of Jada maybe not expressing herself next time. She seemed like she was caught off guard by the situation and was going to talk to the vice-principal about what she should do on her end. I did tell her that I emailed the teacher so she didn't feel like she needed to handle that aspect. And I expressed the need for privacy. The conversation felt productive. I will follow up with her tomorrow as well.

Now that I sit here rethinking it all, I wonder if I've done enough. Are my words enough? Was my email enough? Was talking to the nurse enough? Should I call the vice-principal? Should I call a meeting to discuss the situation? Will the higher-ups believe that the teacher yelled or even fussed at her?
Any input is appreciated.

Sunday, March 11, 2012

Insurance

Let me start by saying how grateful I am to have my girls on state insurance. I am a single mother after all. There is no way I could ever afford all of Jada's medical needs any other way.

That being said. Our state insurance has made some significant changes. What used to be Medicaid is now the choice of five different plans that may or may not have coverage for your current doctors. So the deal is that you have to choose between one of these five plans to be enrolled in and see doctors in their network.

This is challenging for Jada's care.

Her psychiatrist doesn't accept any insurance but this is where Jada's prescriptions for treatment of her bipolar disorder and ADHD come from. A total of five medications. Three of the five plans won't cover her prescriptions from an out of network provider.

So I am down to choose from two.

Her opthomologist isn't covered under the two I have left but she needs the prescription coverage so bye-bye opthomologist.  I chose her current optomology center because of its size and I was confident that if she ever develops complications of any kind, they would be equipped to handle it. I am so disappointed at this loss.

Her endocinologist is only covered under one of the two plans that I have left to choose from. This is where her diabetes and hypothyroidism are looked after.

So taking all that into consideration, my hand is forced to choose one plan and I loose her current opthomologist. But prescription coverage is a MUST!

It's a mess. But thankful to have it.



Negativity

I can't believe I haven't blogged since December.

I want to blog. I have lots of thoughts, lots to say. But I know how anything I say will come out sounding. My words will be some tribute to my negative thinking and I'll find myself wondering why anyone would ever read such a negative blog.

Negative thoughts are something I struggle with. Always have. Depression too. I've been depressed for quite some time now. Still struggling to get back into being some sort of productive human. I am productive I guess. I raise two kids alone so how could I not be? I go through the motions with no enjoyment of anything.

See nothing but a rambling of negativity....

Sunday, December 18, 2011

Single Parenting

Majority of the time, I don't mind being a single parent. There are lots of perks to me.

But there are a few times that I wish I had a partner to rely on.

For instance, Friday night. Erin went to bed with a glow stick. She then decided to bend it until it broke all over her face including going into her right eye. She started screaming something scary. Of course, my first thought was that Jada was having a seizure and she was frightened but out she came running with a yellow face. I immediately put her head back in the tub and started rinsing her eye. I called poison control and followed their instructions. But I was freaked out. All I kept thinking was I wish I had someone here with me. Someone to lean on. Someone to calm me down and tell me that my child would be blind. Yeah, like I said, I was freaking. Someone to stay with Jada in case a trip to the emergency room was needed at that late hour. To sum up the rest of this incident, a trip to the emergency room was needed the next morning as directed by poison control. The doctor said Erin has a burned cornea. The rest of Saturday was painful for her but today was much better. We follow up tomorrow with an eye doctor.

Then there was today. A birthday party that Erin was invited to. What am I supposed to do with Jada? Lock her in the closet? I've heard that's against the law. So I have to tow Jada along to crash a birthday party. I hated doing that since the family pays per child. I offered to pay for her but they insisted that I didn't need to. I still feel guilty about it.

Like I said, majority of the time, I don't mind being a single parent. I enjoy it. Well at least until trips to the emergency room leave me freaking out with two kids in tow.

Thursday, December 1, 2011

She's Struggling

For the life of me I can't sleep. Even after taking my anxiety medication, still no shut eye for me. Guess I am just overflowing with worry.

Today, I handed in a letter to Jada's school requesting that she be evaluated for special education. I had the letter written for about a month now but after our last school meeting, I was very optimistic and thought things would go smoother than they have been.

Last grading period, Jada was on honor roll, even in conduct. This grading period is a whole other situation. Right now, she has two As (Conduct and Strings) and the rest are Cs and Ds. I am so distraught about it. I know Jada wants honor roll. She was crushed last year when she didn't receive a trophy at year end so I know that it means something to her. I know she is doing her best. But she is struggling. I hate that she has to struggle.

One issue is that often times, Jada doesn't write down her full assignments for homework or she forgets something that she needed to complete her work. I mean, how can you study for a test without the material to study? Lack of organizational skills is very common among children with ADHD. I have talked to her teacher several times about checking to be sure everything was written and that she had all her materials but it doesn't always happen. So when it happened again yesterday, I emailed her teacher (who is usually very accommodating) about Jada not having her notebook to study. The response was pretty much too bad. I say it that way but she didn't. She is a good teacher and person. And of all the third grade teachers there, I am thankful that Jada is in her class.

Another issue is....well I don't know why the sudden drastic changes in her grades. I asked her teacher for her opinion and she didn't exactly give me one. So I shall have to investigate.

Another mom of a special needs child suggested that maybe it has to due with the student teacher. Valid point. Maybe the student teacher is teaching more this grading period and the change has thrown Jada off. I hope it is something simple like that. I am going to see about that.

Truth is. It could be anything...any small detail from an outside source or something within her.

So why special education? She does have a 504 in place. With an IEP, she will have access to so many more resources and possible accommodations.

She is a bright girl. She is struggling. And I am at a loss on how to fix it.

I hate the realization that she will have struggles forever, whether diabetes or mood related. It just stinks.

Unfair

Who decided that things would be so unfair?

I don't usually sit in a bathe of self pity over unfairness but I am these last few days.

I have a special needs child and as such, I have limitations. I can only work during certain hours of the day because there is no one to care for my child outside of school hours. I take care of my child so I don't go out to meet other people or have any resemblance of a social life. I take responsibilities for my actions and where does that get me? Penniless. Lonely. Responsible.

I can't afford to make ends meet. I can't afford rent much less Christmas. And you say you'll help. Oh but wait. It becomes oh you're sorry. You can't. You work. You can work whatever hours you want because you don't have limits. And and you can go out or do whatever, whenever because again, you don't have limits. You don't take care of your responsibilities. But you can have a relationship. You can go walk the mall and buy brand new shoes while I am digging through clothes bins at church for myself.

So yeah. Who the hell decided things would be so effing unfair? Why am I the one is so much need when I am the one being responsible? Why can't I get ahead or even break even?

Why is it so easy for some people to cheat the system but so hard for me to get assistance for basic needs? Why did I get more when I had more and get less now that I have less?

I just have no idea.

Monday, November 7, 2011

Comments from this week

Some things people have said over this past week have driven me absolutely up the wall.

We all get our share of stupid comments related to diabetes. We all get the questions that we give people the benefit of the doubt for not knowing any better. While volunteering this week at the school book fair, I had lunch with the girls on two separate days. On Friday, I ate with Jada. It happened to be a day where a dad was eating with his daughter and they were kind of across the table from us. His daughter mentioned something about Jada needing to go to the office and his dad asked her why. Her answer was that Jada had to go to the nurse because she has diabetes. Insert stupid commentary from the dad about how his so-and-so had diabetes really bad and blah blah blah. I wanted to jump across the table and smack him. I mean what do you do when you are at a table of third graders and all you want to say to another parent is “Dude, shut the hell up. Would you think about what is coming out of your mouth? Would you want someone saying the worst that could happen to your kid?”

Maybe calling the comments stupid is unfair. The comments are not thought out. They are just thoughts sent out into the world without being filtered or questioned whether or not they should be said.

Erin had a substitute on Thursday. Her idea of reminding the kids to study for their Spelling test was to tell them that in fourth grade they take ILeap testing and if they fail it they have to back to Pre-K. Seriously? I am thankful that Erin will believe me easily when I tell her that something isn’t true but other kids not so much.

Then one of the school nurses (of all people) told Jada that high blood sugar causes the veins in your eyes to pop out. Really? You are going to tell an eight year old a random, possible complication because her bg was in the 250s? Jada asked me about it. I had to explain to her the truth of what could happen after many, many years of unmanaged diabetes. She wasn’t quite sure about my answer so the next day, she asked another of the nurses the same question. She’s good now. And I did call the Nursing Supervisor about it. No Nurse should be telling her anything like that. It’s my job as her parent to fill her in. She’s only eight.

Why isn’t is as simple as we tell our kids what we think they need to know about diabetes when they need to know it? Why do people say things like the above without even thinking about it.

Maybe I should make a card that says “Please stop talking now. Think about what you are saying to a CHILD who has to live with this disease forever or until a cure is found. Would you want me telling your child about the possibilities of horrible car accidents that could happen to them? Didn’t think so. So why tell my child horror stories?” Or something like that to just hand over when someone speaks without thinking. Of course, at lunch that day, I wouldn’t have had them with me.

Think before you speak people!