Tuesday, June 16, 2015

Hellish Night = Big Decision!

It has been rough lately with Trenton. To be honest, it really scares me what the future holds. I don't even know where to begin with this post. I have so much I want to say but it is just words. Words describing the never ending hell that Trenton and I live.

Andrew had a few sleep issues early in the night. Sleep has been very minimal in general. A total of 42 minutes to be exact is the amount of relaxation time. That was how long my body got to lay in bed from the time I went to bed till the time Andrew was up crying. By the time Andrew settled down and was back in bed, Trenton was already up and wound. Tiresome does not even describe what it feels like raising a child with severe autism and mild autism. Nothing can describe it.
The impulsive behavior is getting to be unmanageable. His wild, erratic behavior is getting to the point that it is beyond dangerous at night.

The feeling that it feels like to be sleep deprived is punishment. On most days, I don't even feel human. My face is numb and I feel like I am constantly lightheaded. I don't even know what I feel like. Sleep deprivation is horrible for a person and I know firsthand the struggles that go along with it.

As I was getting the boys in the van today to take Trenton to his OT appointment that he had before Harsha, I just kept on thinking about how nice it would be to have someone drive me there this morning. How nice would it be to have help, especially on the nights that I have been up the entire night. Many of the books that I have read where families raised children with severe autism, they had 24/7 help.  I have decided that I am going to hire a person to assist us 7 days a week, 24/7.  People who work have two days off and only work a certain amount of hours in their work day. I am very happy to say, I am going to look into respite care and get the right person to help the boys and I. I am very excited! I am only one person....I can't raise these boys on my own. The help in the evenings and night time will be awesome!!!  I will be able to enjoy all of my volunteer work I do Monday, Tuesday, and Thursday while the boys are at Harsha. It will be like a live in therapist at all times!!!

The moment that made me realize that I wanted to do this was this morning at OT.  As I sat with Andrew waiting on Trenton, in walked a couple with their child. I could not help but think how nice that must be. Then I thought, why not hire someone to do this with me? I should not have to battle severe autism and mild autism after being up all night by myself. It is not fair to me. Other people look out for themselves, so I am from now on too!

As I came to my decision, out walked Trenton and his OT therapist. What she told me assured me that I came to the right decision.
I asked how the session went and she shook her head and said, "He is out of control. His impulsive behavior was scary. I could not control him. He just wanted to hit me and kick me and throw items. Is he like this a lot?"
I told her about our night and how he has many days and nights like this.
She said, "You can't live like this. I hope you have help from you husband or someone. A person can not live like that very long from what I saw and just went through for 30 min. Honestly, I have never seen anyone like him before."
I told her I have been battling long sleepless nights and intensive therapy sessions with long car rides for 3 years now.  She was speechless.....

Needless to say, Trenton was unmanageable in the waiting room. He ripped down all the papers on the bulletin board while I was trying to talk to her and knocked over the items on a table. The therapist was completely shocked with what she saw and went through. Again, words can't describe, you just have to come live with us to understand.

Another long night awaits me.....Trenton fell asleep on the way home from Harsha at 3:45. I was excited when I came home to see that Tim had vacummed the living room floor! Every little bit helps. Oh what will it be like when I hire this person!!!!

I have an idea of how I will train the person and all. The books that I have read helped me out tremendously. It will benefit us all! I will always have an extra person to help me take Trenton places. We will get to experience a lot more and do a lot more.


He was asleep within seconds of our drive home.

1 comment:

  1. Kudos to you on the nap!!!! .. I only wish you still lived next door so I could help. But, you are better off being in Terre Haute for the boys' sake!!! I pray the right individual will be out there for you and you can get some much needed daily help!!!!!