Monday, January 20, 2014

Up In Arms

I am at a loss at the moment and about to come to a cross roads with a decision that will affect the rest of our family lives. It is impossible to get Seth to school without me physically dragging him. I'm at a loss too, because we can get him to go anywhere just fine and with little or no problems. Last year he was great with going to school, he'd run in by himself, happy as could be. This year something has changed. Hormones? Puberty? Your guess is as good as mine. 

His father and met with the administration of his school and came up with a great plan. Really, it was fail safe, full of options he got to make to instil in himself a feeling of independence instead of manipulative control of adults. With these choices, there was a punishment if he refused to follow through with any of them. This punishment is he has to stay home and sit at the top of the stairs, do nothing, be bored. He did the two days last week while the program was planned and set up so he understands what it the punishment really is. Monday morning guess what he picked? Bored! 

Not surprised! He is 13 years old. He would rather sit and be lazy than go to school. I would have picked it too at his age. Now, this choice had to be because the school won't allow him to be there anymore during his fits. The principle contacted the state and the lady instructed that the child be removed and sent home. Every child has a right to be in school, but in the least restricted environment. Him being so upset that others were being physically harmed and his teachers and aids having to restran, hold to the floor, and use so much physical force that bruises were made is not least restrictive. 

I am so tired. Tired of fighting. Every thing feels like a fight. I hate having to be firm, almost mean, to get him to school. Then when he is home, be so strict that he has to sit on and do nothing. That isn't me. I am not a mean person. It kills me. I won't do it anymore!

I don't understand how we can take Seth anywhere else and he is fine. Maybe something has happened to him at school and I don't know what. He is nonverbal and can't tell us. Maybe I should pull him out of school, find a different school even? I have to do what is best for my child. The biggest skill he is learning from school is his OT and speech therapy. If I pulled him out, I could set up other therapy sessions with other facilaties. When we took him for evaluations, he was amazing, his behavior perfect. This staying home being bored isn't doing him any good, it's destructive to his growth he has made! 

 I am at a loss. Some people often tell me to send him to a type of group home... Um, no! He is my child I will raise him. That drives me crazy when that is thrown out. The other thing that is so frustrating is yes, thing look so amazing and simple on paper. When we meet with officials and administrators they lay out plans, advise, and what have you for us as parents and caregivers to do. And news flash, I DO THEM! FAITHFULLY! I am not the type that just act like I will during meeting then walk away to resume old habits. I freaking try. Some plans work, others don't. So unless you are in my home, have or are living this, you don't understand. The experts are the familie, not the ones with degrees sitting behind the desks telling you what to do. 

I am giving my whole life, devoting every waking moment of these kids to these kids. That is my life. Minute by minute is dedicated to insuring they get what is needed. Every parent training skill taught to me is applied. Yes, I let my kids pretty much run my life, but  I am in control of the schedule. A simple life would be so ideal, but it's not in my cards. Mine is chaos within the strict schedule. So when you get your kids ready for school, don't yell, kiss them when they leave, because it could be a whole lot worse. 

Monday, January 13, 2014

That's What You Get

When it's crazy hair day and your mom is a stylist this is what you get.
Forget hair Halloween paint in a can! We shave crazy designs and use real hair color. 


Round and Round We Go

The past 6 months have felt like all I have done is bounce from meeting to meeting. Child evaluation to the next. This week I have 6 meetings or evaluations in span of 4 days. My head may explode. Not joking.... 

I have mentioned before how I constantly educate myself on my children's conditions. Well, I could probably now qualify to be a developmental therapist or specialist. Between my three children's wide affected spectrum range, I am fluent. I have studied autism spectrum disabilities and fragile x syndrome  everyday for the past 13 years. If I didn't need to be as hands on of a mother to these wonderful gifts of mine, I'd go back to school and make a new career. But, I am needed here at home for these kids. 

Tomorrow I will meet at 8 am for my oldest and brainstorm with the junior high school administration about some new rewards and incentives for the token economy system and most likely do a whole new work up and approach of his aggressive behavior essement plan to adjust his IEP all by 11:30 when I meet with my youngest son's developmental therapist to review goals and outcomes. Oh, both will have to be done while I juggle my youngest and little 9 month old niece ( who has fx) who I help watch during the day. 

Wow, 13 years... Do you know I haven't had more than 4 hours of sleep a night in 13 years? Those 4 hours are broken up into one to two hour intervals as well. 

But do you know what? I wouldn't trade it for anything. I love these kids so much. To the point I will go to meetings non stop to help give them a better life. Now, who wants to make us dinner because I will need a nap after tomorrow's schedule. 

Friday, January 3, 2014

Seth's 2013 Best Memory

I asked Seth what was one of his favorite memory about last year. He looked up at me, eyes excited, and raised his finger, "Football!" He yelled.

Yes, that was a fun few months of football. Even though it was his younger brother, Dom, playing Seth enjoyed it just as much. He loved going to each practice and watching the boys run plays, drills, and hits! The head coach allowed Seth to participate by being a "helper," which mainly consisted of him being a manager, standing by the coaches at the sidelines, echoing the players the coaches yelled (good thing they watched their language), and high giving the boys when they came in for a huddle. Seth made sure he took a cooler of water to each game (with the help of his dad). 

On his birthday, the team presented him with a team logo football that they all signed. Seth still to this day sleeps with it. Then on the last game of the season, the head coach had a surprise for Seth. Coach arranged with the officials and opposing team to have Seth run in a goal during a dead all play. Oh, the tears! I bawled... Happy tears. The boys readied as if it were a regular play, snapped the ball to Seth and huddled around him (nobody was going to break that line to hurt their Seth) and ushered him across the goal line! The smile on Seth's face had never been bigger! The opposing team all highfived or patted Seth on the back while ours cheered along side of him. Best play of the season I say!