Wednesday, June 4, 2014

Daily Battles

Autism is a roller coaster. Raising children with autism is nothing but a roller coaster. When you think you are taking steps forward, you suddenly go backwards.

Trenton's tantrums and meltdowns are getting much much worse. They are even getting worse in the car. We had a good period where he was relaxing in the car. However, just like the snap of a finger, our car rides have turned into another ugly situation. For the past month, he screams, cries, and fusses 50% of the time while in the vehicle. When you are in such close quarters like a vehicle, the ear piercing screams are nothing but nerve ending. I average pulling over on the side of the road three times from the time we leave our house to the time we reach our destination which is normally not farther than 35 minutes.

Trenton has to carry multiple items in his hands before he can leave our house. These items stay intact in his arms. If one item drops, he screams bloody murder, cries huge tears until I pull over on the side of the road to pick up the item and place it right back in his hand. It does not matter if he has 10 other items in his hand, he needs every item he left the house with in the exact placement before we can resume our trip down the road.
Another issue that is making car rides nerve ending is the issue of a booster seat. I have been dreading this change for several months. I anticipated it to be a very out of control situation when I changed him to a booster and it is. I know my child too well. Many didn't believe me when I said that he will get out of the seat belt, shift his body all over the booster seat, squirm better than any snake I have ever seen. And he is! Therefore, I have to make stops to get him back in his booster seat. Never a dull moment. I told Tim the other day that he didn't know how lucky he was to have so much down time and time away from autism because unfortunately he doesn't even understand the never ending battle fights I go through daily. But who can unless your the child with autism or the mommy walking side by side daily with him????

For example this is how the last 24 hours have went.......

Trenton has been upset, crying and going to the door since 4:30 PM Tuesday evening. It is 6:00 when I give up and take him on a car ride. Trenton and I drive around for one hour. I force him in the house at 7:00. He is still upset. He walks around and does his thing for an hour or so. He gets mad and scratches his eye with his ever so long fingernails. I ask Tim to help me hold him down so I can trim them. (Trenton can not handle getting his fingernails clipped. This sends him into sensory overload.) Once we are done clipping his nails between the kicks, screams, and cries.....I drive him. He cries in the van until he falls asleep. I carry him into bed. Andrew goes to bed very easily too at this time. I finally go to bed at ten. I am up with Andrew at midnight. He goes back to sleep about a half hour later. I hear Andrew crying again at 2:00 AM. I get up and check him. Andrew is awake and ready to go for the day at 4:50 AM (That was a good night!!!!) I am up making the usual breakfast at 5:00 AM. Trenton is up at 6:00. I get both boys and myself ready for day and we are out the door at 7:40 for therapy. Trenton is upset the whole way to therapy. I pull over two times in the first ten minutes. We arrive at therapy. Andrew goes back with Emily. Trenton goes back with Jill. I step in on Trenton's speech session for one minute. I hear Trenton say a word and I start crying. (I have cried the last three times at Olney during therapy.) Jill looks at me and I say crying, " His voice is so sweet." Once I collected myself I walked out into the waiting room. I wanted to watch the whole time but I didn't want to cry anymore there than what I already have lately. It is very emotionally painful to watch your children work so hard every minute of their lives to what comes natural to most. When time was nearing an end of therapy, I hear Trenton going completely nuts in his OT session. I think it is by far the worst screaming and worst meltdown that I heard in a long time. Emily needed my assistance. I couldn't control him nor calm him down either. I put him in the van. I had Jill walk Andrew out to the van for me. We headed home and listened to Trenton cry and scream for the next 25 minutes.
We drop Andrew off at Uncle Brian's to play with Lincoln. Trenton and I head to an ABA session, which went much better. I battled Trenton crawling out of the booster seat the whole way home from ABA. I had to pull over 3 times within 30 minutes. We pick Andrew up at Uncle Brian's house and this time I listened to Andrew scream and cry all the way home. He did not want to leave Uncle Brian's house. Andrew has a hard time transitioning....very hard!

The rest of the day was listening to Andrew's learned speech, watching both of my children's unusual play which is Andrew lining up and moving toys around the house and Trenton's OCD with his DVDs in and out of the DVD player, and so forth.

Andrew is learning more repeated language and is using it very inappropriately. I have said before how he will just walk around saying, "all done 4 wheeler", "tractor ride", "pops tractor", etc. When he says learned language I try to correct him. For instance, if I hear Andrew say, "all done 4 wheeler." I say, "You haven't taken a 4 wheeler ride today."
Well, guess what?? He has now heard my response just enough that he quotes it all.
Andrew will be in the house walking around saying, "All done 4 wheeler. You haven't taken a 4 wheeler ride today."
He does this with the tractor ride quotes too.  I am really not sure which is sadder, if there is one...a child who can't talk or a child who has only learned language and uses it repetitively throughout the day.

Andrew's lines started very early this morning. They were like this...

 Once his line was finished, he moved it all into Trenton's room. This reminds me exactly of the kind of play Trenton did when he was around 18 months old.

 Trenton enjoyed sitting and looking at a book for a few seconds in front of the oven.
 This does not remotely show you all the twist and turns he does in a booster seat but it gives you a small idea of how I am not stretching the truth.
 Something so easy for most families, is extremely difficult for us. Seriously!!! Who would have ever thought that a booster seat would make my living nightmare even worse.
 His DVDS are still going everywhere with us. The receptionist at Effiingham is wonderful to let Trenton do whatever to her area while we wait.

Psalm 34:8

Taste and see that the LORD is good; blessed is the man who takes refuge in him.

1 comment:

  1. You have to be strong, for you and for your child. You are a wonderful mother! Take care of yourself!