The White House

The White House

Saturday, January 14, 2012

Being Real

Tuesday sucked. Sucked and sucked some more. The short of the long…. I have devoted the last 5 months of my life, gone to about 40 meetings all the way up to an Executive Session with the school board to get my son back in to school. I’ve had the support of my husband and he’s attended many of the meetings, but other than that it has been all me. And all that I had to do plus all the medical stuff has really affected the quality of life in my home.

So what happened? Yes, he got back in to school. It started last Monday. He made it a couple of days before getting in to trouble and getting suspended for ten days.

I am beating my head against the wall. Literally. I love my son very much and it is just another bump in a rough road that has been his entire 16 years. It isn’t about me doing this or that, it’s about the kid. Who he was born. His inability to think in the future tense. It’s his child-like in-the-moment personality that is tough to work with. He has always struggled in school.  Before his head injury he had a violent temper. Now he is so emotionless. That in itself is sad. Nothing is sacred. He’ll steal just about anything from all of us. He doesn’t even see it as stealing. He’s just “borrowing it”. And forgets to give it back. I could really go on and on about the daily struggles I have, but I won’t. Those of you who have kids born with difficulties understand the struggles. Those of you whose kids left the womb perfect, please don’t judge. It isn’t poor parenting, it’s just me (and my husband) working with the person he is, things changing hourly sometimes and doing the best we can.

But sometimes I just want to scream. And cry. So I did. Damn it. So much time, so much effort, so many people involved…and it lasted only a couple of days. And now here we are. Prisoners in our own home. Passwords on computers. Purses locked up. IPod and phones in pocket. Every half an hour going through the same discussion with a 16-year old who forgets….why he can’t have his electronics and internet. Talks about consequences. About life.

I won’t even put on my happy face and pretend today. I’m damn exhausted. I’ve spent a year in court battles over custody of a kid who my ex would kick out of his house (again) within hours of him being there. He has no clue the things he will say to them; the things he will take; the things he will destroy. And then run away. Yep, it all looks good on paper, but he has no idea how involved raising a kid with disabilities is. Not even a clue.

So there’s some honest truth for you. And that doesn’t even touch the iceberg of crap I deal with. Not even close. So….when you run into someone in the store who is a bit rude remember to show compassion. You have no idea what things they might be dealing with and maybe there mind is a million miles away solving problems.

So….what’s the good stuff?

Awhile back the boys shoveled the sidewalk and stairs. My back was grateful.

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Then Nick shoveled a path to the bus. Good thing because the kids never would have made it….the snow was really deep.

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Wednesday was like +20. We got one or two days of warmth and I knew I had to get some plowing done before the temps dropped again. I shoveled all the snow on the left out away from the house. I spent about an hour working with the 4-wheeler. Then the wind started blowing and I was freezing. I finally quit when I realized I pulled something in my neck working that broken plow that no one will fix for me. (Yes, another bitch of mine). In fact, the intense pain in my neck last for two days. Just what I needed.

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Wednesday I sautéed chicken with a bunch of spices for an alfredo pasta dish. I’m sure I cooked other things this week, too, but I lost my camera on my table and just found it today. (Yes, when one part of your life falls apart and needs your attention the house goes to hell).

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The best thing about this week? My precious Emily came home. She is the sunshine in my day.

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Lucas had his second basketball practice on Thursday. I help, but would like to just run things. I just want to scream at the coach “they are 5! and don’t understand you”, but I don’t. I just try to help them understand what he is saying.

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We went to Food Factory. Again, not something I wanted to do, but was outnumbered by the rest of the family. I want to pay every dime I have on bills so I can get the hell out of Dodge, but everyone else wants to enjoy life a little. I get it. I do.

So what’s up with the obnoxious flash on my phone camera? She looks like a vampire with beautiful eyes. (I’m laughing at the jacket…Emily is skinny and that makes her look so big!).

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It is –34* below zero at my house today. It is –45* down in town. We have a 3 day weekend and we’ll spend it locked inside just like we did for the 19-day Christmas break. This has been a long winter in so many ways…..

10 comments:

FlowerLady said...

((((( Gayle )))))

Martha in PA said...

I have no words, can't even fathom what you are dealing with. You amaze every day the things you do for your family. I know I about thought I would lose my mind this time last yr when my daughter was struggling, but it passed!

Working in retail, I always try to remember that we have no idea what that nasty customer might be going through outside of the store!

Could not imagine that cold.

Hugs from PA.

gpc said...

For me the most frustrating thing about a kid with those kinds of disabilities is that the "experts" diagnose it and tell you what they symptoms are, and then punish the kids for showing the symptoms. I know that fighting to protect mine did not have the result I wanted, did not change her world, and that eventually I had to let her create some distance and stop trying to fix things. But she was much older than yours before that happened. I can't save her from her bad judgments and terrible decisions anymore. On the plus side, though, she knows I love her and support her, no matter what. Clearly I have no answers. But I feel for you.

Kim@Snug Harbor said...

OMG -Gayle, I don't even know how to respond to this post. You deal with so much. You must be very frustrated. I wish I could offer some suggestions on how to work with Elijah, but we are on the outside, looking in. Nobody can truly understand what it is you're going through, and I hope it helps your soul to share it with us. I will keep you in my prayers.

Humble wife said...

Gayle,

As a child that grew up with issues that defined me, I will only share that even the most woebegone broken situation and child is redeemable. In fact, your efforts can and are making a difference, I promise as my life gives me that as a comfort.

I love the final photos btw, so well teen cool!

((hugs)) from New Mexico

Jennifer

Queen-Size funny bone said...

teenagers are hard enough to understand and throw in brain trauma. It takes quite awhile to figure the person they have become and then find out what works. Unfortunately I can tell you it is hard but you already know that. Just know we all hope better days to come.

RottenMom said...

I'm really sorry that you are dealing with an iceberg of crap. It sucks. Showing some compassion goes a long way, I wish more people would choose to think before they pass judgement. Me included. I would be lying to say I don't do it myself sometimes.

Even children who appear to have left the womb perfect have struggles. Maybe they just aren't as open about sharing the struggles as you are.

Having said that, I appreciate your honesty about your life. I have nothing but compassion for you and your family and pray that you will somehow get through it all in one piece.

I think you are an amazing Mother and Wife.

Holly said...

can't even begin to comprehend just how tough that is for you. Have a big hug xx

Corey~living and loving said...

I feel honored to have read what you had to say today. It is always my hope that things will get easier for you. Sending cyber hugs your way. ♥

Arizaphale said...

OK. Now I wish I had read this before commenting before. The addition of Learning Difficulties to the teenage behaviour journey is like trying to navigate the icebergs with a leaky boat. Are you getting assistance from Special Ed teachers? Ed Psychs? You mention memory issues...do you ensure that you give Elijah visual cues as well as verbal ones? I mean like, writing down the reasons why he can't use his technology and sticking them over the computer (or somewhere he'll see them?). In postive terms? Like 'Because I XYZ I am missing out on the computer today. If I remember to ABC, I will be able to use the computer again.'
Does the school not have another way to deal with his anger issues? Is anyone giving the kid skills in learning HOW to control his anger? I guess your isolation means it's hard to get to professionals who can help you deal with this. I really feel for you. You probably don't want solutions from people who have no idea what you're going through but as Special Ed is my job, I just can't help myself. Hoping next week gets better.