Monday, June 24, 2013

Trenton's Day

Today was a whole different ballgame compared to the past two weeks. I noticed right away this morning that Trenton was sad. The majority of the way to therapy he cried, kicked, threw his hands in the air, and had a constant frown on his face. It was so bad I pulled over on the side of the highway so I could get out and see what I could do to help him. There was nothing I could do.  I hate days and moments like this. I hate the feeling that there is nothing I can do to help my child. Was he mad that he couldn't communicate something to me? Did he forget something at home that he wanted? Did his tummy hurt? Was the car noise from driving on the highway too much for him? Did I have the wrong DVD in? I could ask myself a thousand questions. The point is......I don't know. My whole drive to therapy consisted of me thinking what in the world it would be like to not be able to communicate my needs. What does it feel like to be Trenton? I know what it feels like to be me and I'm just his mom. The person who takes care of him 24/7.

Trenton did not do good in speech today. His therapist said all he wanted to do was stand on the table, stand in a chair, and say No. We got no where in speech.
Occupational was a little better. Emily did some sensory integration therapy with him, which he needed very badly, as well as trying to do some imitation play. She said he acted like he had no clue on how to imitate the block tower that she was building.

Emily and I discussed Trenton's amazing two weeks and how today was the end of his "good period". She told me that Trenton displays a lot of the characteristics of children with autism who go on to have a personality/mood disorder diagnosed to them. She is afraid that Trenton has this and it will continue to get worse as he gets older. I trust her in what she says. This woman has many years of experience in the autism world. Approximately 50 percent of autistic people have a personality/mood disorder. This is often seen in the more severe cases. I will pray every day that he doesn't. However, due to his inconsistency with how his days are, it is a red flag.

She also says that Trenton sensory system is WAY OUT OF WHACK due to surgery, change in routine at home, etc. Trenton's body is responding the right way at times, by stimming, and other times he is responding almost like a normal child because his body is shutting out all of the sensory input because he can't take anymore. This leads to him acting almost normal but having a very difficult time later.

By the time we go home from Olney, he had pooped his pants and had poop smeared all over his hands. I pray this poop smearing ends soon.

This afternoon his ABA therapist, Alicia, came to the house and we did not accomplish much at all. She actually left after one hour because we weren't getting anywhere today. Why try another hour and waste more money. During her session all he wanted to do was run and pace back and forth in the house. The pacing was constant. I would definitely say that if Trenton could talk today, he would tell me he had  the ant feeling and some major vestibular sensory problems today.
During his aba session, he would pick up a toy, bring it to me to touch, and then bring it to Alicia to touch. This continued for a few minutes. Whatever he picked up, we all had to touch before he placed it in a certain spot.  All doors had to be closed today during the day or he would get upset.
Overall, not a very good day. I hate it that he has to have days like this. Unfortunately, that is a battle of the disease. Today is just one small example of why is is impossible to leave and do anything. I could not even imagine if we were somewhere farther than 30 minutes from our house today. It would have turned into a very unpleasant situation. I pray Trenton does not have the personality disorder too. Unfortunately that would only make EVERYTHING harder to do.

1 comment:

  1. I pray Trenton gets back into a good period soon and that they start outlasting the challenging ones.