Some Ugly Days

Tucker is, as usual, doing some very cute things lately.  Just when I am at the end of my rope, he does something to crack me up and remind me why I stick around;)  I figured I'd start with some of those stories before getting into the ugliness around here lately.

Tucker loves, loves, loves Black Bear. It is a little happy meal toy (donated, you know he doesn't eat Happy Meals, haha) with a hook on it.  So he can hook BB to his finger and go about his day, knowing BB is right with him.  For my facebook friends who see the pics, you know that BB has made the rounds lately.....Lake Charles, Global Wildlife, grandparents' houses, Easter egg hunts, etc.  And don't anyone DARE touch BB, or you may lose a hand, haha.  So, I was super shocked when on Saturday Tucker picked up a new teddy bear at the store and said "want da bear."  We had told him he could have a prize, we assumed he'd pick chips.  Well he clung to that bear and wouldn't let it go.  So we bought it. Once in the car, he literally threw BB aside and held "Bear Bear" for the rest of the ride. We went to a few more stores, getting ready for our beach trip and Jackie & Justin's beach wedding this weekend, and Bear Bear stayed with us.  He also came to Jackie's nursing school graduation party.

So it has just been hysterical watching him with Bear Bear, then he realized Bear Bear is too big to fit into anything.  Stuffing BB into firetrucks, mailboxes, egg cartons, etc. is a great pasttime of Tucker's, so when he realized new Bear couldn't fit into anything, he majorly freaked out!  Chris had brought him to his parents, and Mrs. Mia called asking where BB was.  I could hear him in the background "black bear, black bear" Mrs. Mia said he realized new Bear didn't fit into the mailbox, and it was over!  So Sarah and Brad happened to be over, so they drove BB right over to Mrs. Mia's, thank goodness.

Tucker has been watching Barney videos lately, and that reminded me of that song "Me and My Teddy."  It is a Barney classic, just in case you never heard of it, and my sister Sarah actually sang it on stage at our school talent show when she was 5 years old, and won first place!  So anyways, I knew that I had the song somewhere in my memory, and once I looked up the lyrics, I started singing it to Tucker.  He LOVES that song now.  Gina and Chris asked me to please stop singing, so I bought it on my IPhone, best 99cents I ever spent :)  His face just lights up when it comes on, it's so cute.

On Tuesday morning, I was in the shower, getting ready for the day.  Mom has been teaching Tucker how to dress himself, and he is really doing well with it.  Well anyways, I'm in the shower, and I hear the bathroom door slam open.  I thought Tucker was asleep, so I poke my head out of the shower, and I see Tucker. He was standing there with his pajama shirt, his diaper, and his knee-high socks with school shoes on!  He said "go to school."  I told him to close the door and get out!  But I was cracking up laughing, as I had no idea he could put on his own socks or shoes.

So with the funny stuff said, it has been awful here since Saturday. On Saturday, we started Tucker on 5 mg of Focalin for ADHD.  There are possible side effects of anxiety, insomnia, and loss of appetite.  Tucker is on 40mg of Celexa for anxiety. We recently moved from 30mg up to 40mg and have seen a big difference. Last week Tucker got "good" and "excellent" behavior at school all week. So we knew we would have an adjustment period with the meds, but we knew we had to start some time.  We wanted to start before his ABA therapy started so that we wouldn't be experimenting with meds and wasting valuable time.

Giving Tucker the Focalin made it seem like he had NO Celexa in him at all.  He pulled his air all day, grinded his teeth all day (which is a horrible sound, and up to that point I hadn't realized that he barely does it anymore), threw fits at the slightest provocation, and would not take NO for an answer at all. He hit people, dogs, and anything that was in his way. 

I of course knew that it was because of the medicine, but my goodness, we still had to make him follow the rules.  And that was so, so tough.  He really doesn't like being at home, he much prefers being in the car. We rode around a lot on Saturday, and he would say "Jason Adeen" for Jason Aldean, and we'd play the CD over and over.  One of the songs was scratched, and he was Mad!  Then he didn't take a nap at all, and on Saturday night, we picked him up from Chris's parents' house at around 11pm, and he was still wide awake.  He threw himself on the floor in a fit when he realized we drove the car, not Chris's truck. Then he was okay on the car ride home, but when we pulled into the driveway I said "we're going inside, it's time for bed. We are not riding the truck" that set off a one hour tantrum. We all fell asleep after midnight.

Sunday was a little better, as he slept the whole morning!  I went to church without him. He actually asked to go to church, I think he really knows the days of the week, and wanted to go as it is part of his routine. But I knew that sitting still for an hour would be too much on him.

Well sitting at home for an hour was too much on him, too, so Chris took him to my parents' house where my Dad was BBQing.  It was a very nice day, and the food was great, but Tucker definitely wasn't himself.  Chris and I agreed that he was better than Saturday, so maybe the meds were not so bad.  I played "Me and My Teddy" on the phone a lot, and then we went home and we all took a nap.  Chris and Tucker played outside for a long time that evening, and we thought things were much better.

On Monday, it was my birthday, and Tucker had a class presentation at 1030. I got up, got us both ready, gave him his meds, and put him on the bus. I did a little work from home, then went to school for 1030. I knew something was wrong when I saw one of the para-professionals walking the halls with Tucker. I know that his teacher Mrs. Amy wouldn't just put him in the hall for no reason, she is very good about making him understand things and changing his behavior.  When I walked up to him, he looked the opposite way, like he didn't even notice me.  When it was time for the kids to sing a few songs, he fought the paras, and did not want to go with the other kids. He screamed a lot, kicked a lot, and said "lights off" a lot. There was a projector set up, so Tucker must have been told earlier that they would at some point turn the lights off. While the other kids sang and shared what they learned, Tucker had to go back in the hallway because he literally could not take being in the class anymore. 

I went out with him, because I really didn't want to hear the other peoples' kids' sing (no offense!!), I wanted to try to soothe Tucker.  I went out in the hall and couldn't even get him to look at me, let alone sit with me to be comforted. I lost it right there and burst into tears, and once they started they would not stop. I thought "what on earth have I done to my child??" He kept saying "walk back, walk back" so I held his hand and walked around with him. About a minute later Mrs. Amy came to get us, she said the presentation was starting and she'd like us to come back in. I was still wiping away tears, feeling frustrated and embarassed that Tucker was so loud and that I had no idea how to make him feel better.

We went in and watched the video with pictures from the school year, but I was just so out of it.  I don't know, it was like something snapped inside of me.  Like I just couldn't sit there, like I wanted to grab Tucker and run home, and just let him be all alone if that was what made him feel okay. But I knew that he had to stay at school and learn that even on the hardest days, you have to listen to the teacher and not hit your friends.

So I left him after the presentation and continued to cry, feeling lost and helpless.  Tucker's teacher called me, emailed me, and texted me, telling me that Chris and I had made the right decision staring his meds. She said that we had to start some time, and Tucker was lucky to have us.  Well on Tuesday morning I only gave him half of a pill, and called the neurologist. She called me that evening and said to stop the med altogether. I hope that the meds get out of his system asap, as I want him to get back to his regular self.  He truly does need help for the ADHD, but Focalin just wasn't the right med for him.

On Tuesday evening, a social worker and Personal Care worker came out from a local agency.  As I work full-time, we are hiring a Personal Care worker for two full days per week to help with Tucker.  We have left Tucker with strangers his whole life, we never really had a choice before.  But I did not realize at all how comfortable I am with his school routine and having my mom with Tucker in the mornings and evenings. I trust them all so much, and I have no problem at all going to work, even four hours away on work trips, because I know how well he is being taken care of. (My mom will still have him some days, and so will Mrs. Mia, but we really do need the part-time help.)

So seeing a PCA worker and social worker, and having to tell them the ins and outs of Tucker, not just his feedings and therapies, but the way he likes to be rocked, and how you can't let him see the eggs in the fridge, because then he is sad and wants them.....well that was too much for me, too! I once again felt lost and helpless, like if I had thought harder or could figure out a better option, we wouldn't have to do this, we wouldn't have to hire anyone.  We have another Personal Care worker coming to meet us tomorrow evening, and I am also going to call a few college students who said they'd like to work with him this summer. 

I have a big blue folder that I created when I went back to work. It has everything about Tucker's meds, doctors, how to feed him, etc. I have so much more to add to it for the summer so that the new workers know everything they need.

Tucker can not talk.  He can't communicate his needs and wants, so any caregiver will have a very hard time without the folder.  The PCAs will need as much as instruction as possible, because they can't ask Tucker for any information.  He also can't supply me with any information on how his day was, or if the PCA spent time with him or was mean to him, so I will have to trust these people implicitly.  I know I am being very overdramatic about this, as I used to be a PCA myself in college, and I was good at it.  But these are just all things that I did not worry about before, and it seems like it all hit me at once.

Also, Tucker rubbed the PCA's legs and wouldn't let go, and then hit the social worker in the face....so then I was worried that no PCA would want to keep Tucker for 10 hours a day, I mean I can barely handle it and I'm his mom!

So these are the things that we have been dealing with this week. Right now Tucker is asleep on the couch, so I am hoping that he still sleeps tonight.  Tucker was definitely still off this evening, hitting Chris any time he wasn't looking at him.  Of course Mom said he was excellent for her this afternoon, imagine that! :)

Please pray that we find the right meds for Tucker so that he can reach his full potential, be less frustrated, and be able to communicate with us as much as he wants to.  Also, please pray for our buddy Kyle who is in the hospital right now recovering from yet another major surgery. His mommy is watching him go through pain I can only imagine, and I hope she feels the love coming to her and her son from all over the country.