But aside from that, she's still completely normal
Wow. My last few posts have really brought some people out of the woodwork. I’m grateful to all of you who let me know that I am so not the only one here feeling the things I’ve been feeling. On the other hand – I’m sorry! I wish I was the only one, ’cause that would mean you ladies Don’t!
Thanks so much for taking the time to write to me, letting me know things about you, and letting me know I’m not alone, and I’m not going crazy.
I’m tired. I’m so very very tired.
As Logan says at night – “It’s so very very dark out here.”
I hear ya kid.
How much longer? I’m drained. Nothing feels right. Nothing is going right. I’m exhausted and slightly sick all the time. Everything feels so wrong. So here’s an open letter. To several people.
I love you Poe, but you’re draining me with the important stuff not getting done. I’m determined to not be your mother, and yet, I still reap the consequences. Or I can nag you or do it myself. I’ll still reap the consequences. I feel like I cannot win. Honey I’m tired.
And yes, you CAN go to jail for skipping out on jury duty.
(and yes, Poe reads this, and yes, he knows all this already)
Joseph. Dear God, son, what do we need to do with you? Getting picked up from your field trip by the principal? Running from the group and hiding in the acres of forests and gardens? What were you thinking? What if someone ELSE other than the gardener found you? My God. But you don’t care about that. All you care about is the fact that you didn’t get your way, and us mean adults have stopped you from it. Oh. And by the way? You’ve been banned from field trips unless me or daddy take TIME OFF WORK to come and escort you. You know, in addition to all the conferences at stupid hours, and IEP’s, and all the other stuff we already take time off work for for you to attend one of the best public schools in the nation. Stupid Job. Oh yeah – it pays the health insurance. Sorry, gotta keep it. Son, I’m tired.
Logan, honey? Canyoujuststoptalkingpleaseforjustaminutehoneyi’mtiredgoodlord.
And Self. Dude. No, self, I don’t know when it’s gonna get better. I don’t know if it’s gonna get better, ’cause it hasn’t yet, has it? You’re fat. You’re out of shape. You’re stressed to the max. The house could do with some cleaning and beautifying. And you’re poor. There’s issues with the husband. There’s issues with the kids. There’s issues with the getting-elderly parents next door.
I don’t know what to do about it either, self. I really don’t.
Gotta go – can’t start crying at work. Would be unprofessional you know.
… As in parents of children with disabilities.
I have two words for you as adjectives. Sucks. Hard. A little bit of background for those of you just joining me.
My youngest, Logan, is four years old. His diagnosis: Aortic Stenosis (25%) with a bicuspid valve and secondary left ventricular hypertrophy. In layman’s terms (i.e.: MicheleSpeak) his aorta is 25% too small, so not enough blood flows through his heart (and therefore to the rest of his body). The aortic valve normally has three petals that open and shut in conjunction with each other. Two of his fused together in utero. This causes a backflow of blood into the left ventricle. The left ventricle then must work extra hard to put the extra blood out, causing it to enlarge and harden – just like any other muscle that you work out. Prognosis: open heart surgery, probably around the age of 8 or 9 (we’re going backwards – used to be around 21 or 22) to replace both the aorta and aortic valve with prosthetics. His day to day is really no different, however his smaller blood flow causes him to be smaller than other kids. He acts a little younger than other kids his age. No medications are needed for now. He won’t be able to play contact sports.
Joseph, my oldest, is 6. He’s in first grade. He has learning disabilities, and as of yet undiagnosed behavioral/mental issues. His learning disabilities are easily illustrated. If you ask him, “What is a clock?” His answer will be, “It’s 7:00.” He doesn’t process the information the way you intend it to be represented. As for his other issues… The only way I can describe it is having a 17 year old’s anger in a 6 year old’s body. There’s no way for a 6 year old to process that and he then lashes out in anger and violence. Add the learning issues to it – and he’s usually a ticking time bomb. Prognosis: No idea. We’ve been in the diagnosis phase for a year and a half now. That’s nothing. I noticed something was off/wrong at 6 months of age when his father had to disengage his teeth from my chest physically.
Here’s the rub. If you were to look at my kids, you wouldn’t be able to tell that they’re disabled in any way. Logan and Joseph are vivacious, sweet, smart, and fight as brothers should. There are no wheel chairs, nothing physical to give other people a clue as to what their different needs might be. That’s my job as their mother.
So what sustains a parent through this? Both of these kids will need care and help throughout their childhood, beyond the “norm.” In fact, Joseph may need longer term care. What keeps me here? How do I do it? I think two things. Love and Protection. When one doesn’t sustain me, the other kicks in and takes over and vice versa. They are a part of me. I carried them for 9 months. I sustained them with my very body. There is a primal love there. It’s my job to protect them – and really, if not me, who? They didn’t ask for this, and yet here are these two little beautiful souls. So, I love them, and someone has to.
What some people don’t get is the fact that it simply is. There’s no fault anywhere. It wasn’t caused. They just are. We simply exist. This is their reality.
And really what choice do I have, other than to get through it? Leave? Abandon these beings? Abandon my husband to do it himself? Run away with him and let the state sort it out? I think not. And yet? And yet. The thought of less complications, a simpler life, and well – singlehood are all very tempting thoughts. But I think that’s true of all parents. C’mon – after a bout with an entire family with the stomach flu… Who wouldn’t have a little daydream of BC (before children)? But you know what? Those parents got through that stomach bug. Why? Love and protection.
Please stop asking me the question, “How do you do it? I’m not sure I could!” Instead, ask something else. “What can I do to help?” “Need me to baby sit?” “I was thinking of you today, want to chat?”
How could I NOT do it??
A family in Pinellas County, Fla., whose son was put into a large “body sock” by teachers as punishment, is considering suing the school board after an investigation found the sack was used appropriately on the boy.
No. NONONONONONO.
First of all, it’s an instrument meant for people with disabilites to shut off the world so to speak. Kids who have disabilities like autism and such, where there is a need to turn off stimuli. The other use, according to the article, is as a learning tool for kids to learn about 3D spacial lessons about the world around them.
It is not meant to be a tool of discipline.
Let me repeat – it is not meant to be a tool of discipline.
In my opinion it’s the equivilent of putting the child in the closet for bad behavior. Y’all know, with the problems we’ve had with Joseph, I’m all for radical & unusual discipline. I have to be, as my son has issues and doesn’t respond at all to the “norm.” He actually might benefit from this kind of thing. But that would be because my son IS disabled, and DOES have stimuli issues – it would be a calming down thing for him to benefit from it, NOT a discipline thing.
And to do it WITHOUT the parents consent or knowledge? Then the board decides it was used properly, however, they’ll put the use of it in the orientation next year?
OH HELL NO.
You do not do a thing to my child without informing me. I’m called everytime there’s an issue. And like I said Joseph needs different types of discipline for it to have an effect on him. For example – one day after an episode, he had to do his homework in the principal’s office. He doesn’t like her. It had an effect on him. In addition to that – they called me (Poe in that case) and informed us. If he even has a “bad” day – no specific incidents – the teacher will email me to give me the heads up.
But NO ONE is going to discipline my child by putting them in a a body sock.
I’ll say it again. In my opinion, this is the equivilent of putting someone in the closet for punishment. It’s wrong.
Okay… I have fixed comments. They now work. HOWEVER – I’m sorry to say that you know must register with typekey and sign in to leave a comment. I was getting about 100 comment spam per day. That’s just too much to wade through on a daily basis.
I don’t like people having to sign in. So – if you have a suggestion on what kind of plugin for authentication to use with Moveable Type, I’m all ears, please do share.
Recent Comments