Discussion in 'Parents of Children with Type 1' started by theMad_D_Dad, May 14, 2013.
Someone told me yesterday, "Oh, good, it's just child diabetes. They outgrow that."
EXACTLY!!! thats what I'm talking about.
I'm not referring to people who are actually trying to help , but just don't understand.
I can''t even count how many times I've heard that very same remark.
"The same way you'll be an idiot the rest of your life, she will always be a diabetic."
My friend, people are ignorant about so many things. If you let ignorance enrage you, you will never find peace. It's like being angry at green grass. It's everywhere, and it's just the way that life is.
I'm so sorry that you're hurting. All anger comes from pain, and I can tell that you are in so very much pain.
Honestly, I would say that you are transferring your anger onto ignorant comments. It's really somewhere much closer to home. You're angry because you're hurting. If you're willing, stop trying to deal with your anger, and start trying to deal with the hurt that lives at the heart of it.
When a person says that, why does it hurt? What about their ignorance ignites the pain, and what is the root cause of that pain? I know "diabetes" and "my child has diabetes", but let's look deeper than that.
Is it because of the lost hope of a normal future for your child? Is there a part of you that (realistic or not) blames yourself?
Can we talk about the hurt? The anger is a byproduct of that, which is so much harder to discuss than the real pain is.
*hugs* We're all hurting, but clearly tonight / today is one of those days for you when the pain is extra raw. We're here for you, if you're willing to take a look at that hurt in a safe place.
Welcome! My daughter was only recently diagnosed and she's been very stable since released from the hospital, so I can't compare our experiences, but I read your blog and I have to say that, with your child's school experiences, you appear to have a right to be the Mad D Dad.
I won't comment on therapy, etc because I've never had any. Couldn't hurt, I suppose.
I just know that it must be hard when everything is a battle with school. I think a parent's relationship/trust in the school and its employees goes a very long way in how stressed about diabetes a parent would be on a day to day basis. You and I had completely opposite experiences - my daughter was released from the hospital after diagnosis on the evening of March 13th, and the school reached out to schedule the 504 meeting on March 15th. We had our meeting and the 504 in place on March 20th. So, within a week, we had a plan in place.
That went a long way to make me feel at ease and our communication between the nurse's office and home has been frequent and friendly. It was uncomfortable relinquishing her care for hours and hours at a time to the school under the best of circumstances (it probably helped that she was diagnosed during the school year, so she HAD to get back ASAP), but it must be really stressful when the school will not sit down and make a plan and her care is unpredictable and inconsistent.
I'll throw out the concept of "acceptance".
I don't appreciate calls to "think positive", especially from the same people who have no idea what we go through, and I resent having to fake happiness. There has been too much of that since diagnosis. Anger has given me strength and protected me in life. I don't want to give it up.
I do better with acceptance, as in "I absolutely hate x, y, and z. It makes me sad, angry, crazy. In fact, I felt this way last week and again yesterday. And, still x, y, and z happened again." Negative emotions, for me, lose their intensity not when I resist them, but when I acknowledge them. I still feel anger, and appreciate that it helps me know when something is unjust or needs action, but now I can sleep at night.
oh wow, I really appreciate that but I'm not sure there is enough time, nor space in this forum to communicate everything I've experienced in my life that could possibly be the root of all my inner anger. I'm not sure that is a topic that is really appropriate or needs to be explored here.
I can see your point though, yes I need to talk to someone. But the skeletons in my closet, are dark and scary and are not for the public. I'm glad I have found this place, I think I may have made a horrible first impression with everyone, and misunderstood what everyone was trying to say.
I'm sorry I took a defensive position right off the bat with everyone, I guess I'm just so used to that position I don't even realize I do it half the time.
Okay, so I hadn't done that yet. Thanks for bringing that up.
It sounds to me like the ignorance is only a fraction of a larger pain and a bigger picture.
You aren't being supported or listened to by the very people who are supposed to be supporting you and assisting you in making this just a little bit easier for your daughter.
That's the heart of this pain. The people whose job it is to help you, to support you, to care for you... aren't doing so. In fact, they are making it more difficult and more painful.
You've taken one step, you've gotten the News involved.
It's time to surround yourself with the supportive people that you need. The ones who were supposed to be that way, are not.
You need help protecting and supporting your daughter. The ADA can help you with that. An attorney can help you with that.
I am so very sorry that you have to battle the people who should be your support net. It isn't fair, and it isn't right, and it hurts.
But please don't be afraid to tell your daughter, "That wasn't right and it wasn't fair. And I want you to know that we've gotten an attorney, and we're going to the school to have a meeting with them and get this kind of bad behavior on their part fixed. I want you to know that I'm not tolerating it, I'm taking action. And it's ok if you're mad about it. I'm mad about it. That was wrong of them to give you stinky crackers instead of a cupcake."
You'll get through this. It sure as hell is hard, and when the people who are supposed to support you, don't... that is painful.
And it's wrong. You CAN do something about it, and I know you're working on it. It's terribly presumptuous for me to say so, but I'm proud of you. I can't give you the support that you need from them, but I can tell you that I give a damn and that you sound like you're knuckling down and being that 'papa bear'.
I can't say enough that I'm sorry it's hard for you right now, or how sorry I am that your family is going through this. I'm so sorry that you're hurting. I think that counseling might help you understand on a fundamental level that expecting support from people isn't always a realistic (even if it IS a reasonable) thing to do. These people are clearly incapable of giving that support without the proper (legal) incentives. That's not fair and it's not right, but it's the way it is.
I can see where the pain is coming from, and I wish I could offer more in helping you cope with it. You're taking the right steps. Please remember that this, too, shall pass. She won't be 6 forever, and there will come a day when she can demand that they give her a cupcake, too... and if they won't, she can demand that they call you... and screw those stinky crackers.
By telling her that you're taking steps, you'll empower her to stand up for herself. So with time, that pain will fade because you'll know that she knows to expect ignorance and be grateful for when she meets the cool ones. She'll know that she has the right--maybe even the obligation--to stand up for herself, because you showed her the way.
Let her know that you're angry. Don't let her grow up thinking that she has to put a happy face on her diabetes. You're the role model, and you're doing great... but that's one thing I might gently ask you to change for her. Let her see that you FEEL... and that it's THEIR ignorance that gets the anger, not her.
As someone already mentioned, children are sensitive and they can feel your rage even if you hide it. And children will take it personally. So make sure she knows the anger is directed elsewhere.
Tough day today for you. If you were a woman, I'd say, "Go have a hot bath with some epsom salts". But since you're a man, have a hot shower with an epsom salt foot bath.... cause I don't want to suggest something so girlie as a bath.
Epsom salt helps relax the body.
We've reached out to the ADA, they sent us a packet of great info and almost all of it we've already tried. As far as an attorney, we have been on the phone with every single one in our directory but they either do not take on cases like this, or they're afraid to take on the school board.
This may come across as nit picking or preachy, but don't let "diabetic" be your descriptor for your daughter. It's a very one-dimensional word. She is a child who has diabetes. It's a part of her, not the whole.
And yes, if we had a support from our school this would be so much easier, but they treat us like we're the bad guys. Even though they do things like the cupcake instance, or all the times they don't check her before putting her on a bus, or checking her at the end of the day she be 350 then they give her a 20g snack UNCOVERED, saying "but the school nurse wasn't here" .. like really? In Va they have a law that there are supposed to be at least 2 people that can administer insulin at all times. Not so here.
You know what, let's see what we can do from that angle.
What state are you in?
Let's see if any of these wizards here can help locate someone who'll take the case or assist you in some other way on the practical side of things.
Honestly, it really sounds to me like you feel helpless, hopeless, and defeated. And of course that's an agonizing way to feel. No wonder you're angry, that's a lot on your plate right now and I can see how it looks terribly bleak from here.
Let's see what others have to offer from their vast stores of wisdom from the legal side of things. I believe someone will have some hope to offer.
But knowing what state you're in would help (I couldn't figure it out from the News article, sorry).
Mad dad, have you been in contact with these folks yet?
I live in Wv, and thanks. Yes that has a lot to do with why I feel angry. We keep running into dead ends, and every other parent around us just accepts this as the norm. (they withdraw and homeschool) I hate being bullied. Just because my kid needs a little extra care doesn't mean she shouldn't receive the same education as her peers.
I know how it feels to have a break down... some days are fine and others I need to cry, or scream or yell about how much I HATE diabetes and what it is putting my kid through. For your sake I hope you do find a councilor to help you with the lifelong anger you have, but also I want you to feel free to have "one of those days" here. If we can't be there for each other during those hardest of times then what good is any of this. I am really thankful to have found support on here early in our diagnosis, I wonder if you had the same support from the beginning if things would be different now... either way, we are here for each other and you are part of this crazy club that none of us wanted to join, so feel free to lean on us
thank you for the link, and no I haven't. I just sent the PACER group an e-mail inquiring what they would suggest the next step be.
We are at the point now, I'm not wanting it to go away and them accept us now. That time has passed. That went out the window when CPS showed up at my doorstep, because of the school. I want them to pay, I want to expose this to the world so that no other parents have to go through what we have. The frustration, the fear, the torment, the harassment, the down right hopelessness of being made out to be a horrible person because I dare keep my child safe. Not to mention the embarrassment of having my neighbors see a CPS worker at my home (we live in a small neighborhood where everyone knows everyone)
Have you gone this far with the ADA? http://www.diabetes.org/living-with-diabetes/know-your-rights/how-to-get-help/filing-complaints.html
Does anyone know if Crystal Jackson is still working these things at ADA?
O.M.G!!! Just read your blog... I am just floored that they would treat your daughter that way!!!! I hope the ADA helps you kick some serious butt here!
Another resource for you, from the aspect of CPS showing up, and even from the standpoint of taking this to court if you can't find an attorney, is http://kidjacked.com/
This tells you how to manage a court case YOURSELF. Because sometimes (and I have experienced this myself directly), attorneys are all more interested in rushing cases through and getting deals with each other... than in the actual case itself.
If you have to take this to court, then you CAN do it. You can do it without an attorney. It's not the first choice, but don't allow them to be in collusion with the courts and the school and prevent you from taking right action.
Hey, maybe we can't "fix" it, but that doesn't mean that we can't all come together and do our best to help you out. At minimum, we can show that some people DO care and that there are choices and options. Something that, clearly, no one else is doing for you.
You don't have to just lay down and take it if no attorney will take the case. Will it be harder? Yes. But that doesn't mean it's impossible or that you aren't capable of doing it. You CAN do it.
I googled "West Virginia attorney ADA 504" and this entity came up - have you spoken with them?
Separate names with a comma.