Seven or Eight

I know it's been awhile since my last post! I actually had to go back and read my last entry to remind myself what was going on last time I wrote.  I have thought about writing several times, but whenever I have the free time to write, I'm more interested in taking that time to relax.  I'm tired, folks. 

Last week, in addition to self-feeding, Cody started working on independently drinking from a cup. Let me remind you that this looks a little different than what you might be imagining. Each sip of milk is measured with a dropper from one cup of milk into the pink cup with a cut out for your nose.  Then the cup is placed in front of Cody and he picks it up and drinks it.  Dr. Criado and all the other therapists who work with Cody have been amazed by his progress in self-feeding and self-drinking.  I was especially shocked that he took so well to the cup, because it's unlike what he's ever done before.  At home he has ONLY used a soft-spout sippy cup and has never used an open cup.  I am surprised at the self-feeding, too, but at least I knew he already had practiced the skill of lifting the spoon of food to his mouth before.  Dr. Criado and I have already discussed what else Cody can work on while he continues here at the Marcus Center.  Chewing will be a focus as will scooping his own bites of food.  Scooping would be monumental, because that would allow him to eat some of his new foods independently at school in the coming months and next year.  

Cody's behavior has been not as good over the last few weeks, I'll confess.  Perhaps he's tired of being here, confused, overwhelmed, etc and unable to express it. His meltdowns have gotten to where I really don't want to take him to any stores at this point.  The last two times I took him anywhere, I had to surfboard carry him to the car when we were done.  And just general not following my directions, listening, etc has increased.  This morning when Cody got up I could tell it wasn't going to be a great day. He didn't have any real meltdowns before we left the house, but his attitude was not great.  When we got to the Marcus Center, he had his first meltdown when someone ahead of us pressed the elevator button and he didn't get to.  When I say meltdown, I mean that he threw himself down prostrate on the floor in the middle of the lobby.  The bad mood really came to a head during our lunch session when I started training on self-feeding with him.  Here is how self-feeding works.  The caregiver fills the spoon with the first kind of food, places the spoon on a plate, and puts the plate in front of Cody.  He has five seconds to pick up the spoon and take a bite.  If he does not do that in five seconds, the caregiver says "take a bite." If he doesn't take a bite within five more seconds, the caregiver pantomimes taking a bite with an empty spoon and says "take a bite like this."  If he still doesn't take a bite after five seconds, then the caregiver takes Cody's hand and feeds him hand-over-hand.  During this time, Cody's movie is on pause.  If he takes the bite at any time before the hand-over-hand prompt, then the caregiver says "good job taking your bite" and turns on the movie.  Cody has 20 seconds before the pattern starts again with another food or drink.  So today when Cody came to the lunch session, he could see the Paw Patrol video was on pause and he wanted the therapist to start the video.  Of course, she couldn't start it until he took his own bite. Cody got really upset that she would not start the video and that itself increased the unlikelihood that Cody was going to take his own bite! It's possible that he could have been confused by my being in the room.  Up until this point, whenever I was in the room we watched Paw Patrol the whole time, because I've never been there for self-feeding.  This could have made him more confused about why the video wasn't playing.  I'm not sure. Anyhow, he acted up while Damarea was helping him with self-feeding.  He turned the spoon over and dumped the food out on the plate. He cried.  He kicked.  But finally when we got to drinking from the cup, he drank the milk by himself and we got to turn on Paw Patrol-- THANK GOD! He calmed down after that enough for Damarea and I to finally switch places and I started preparing the bites, etc.  I can't remember exactly what changed the mood again after Damarea left for the observation room, but he flipped out.  He threw the spoon, pushed the plate on the ground, had a royal meltdown.  Of course, all the while he's getting more and more food on himself, which makes him even more upset, because he hates to be dirty.  He ended up taking his own shirt off, because he was so upset about it being dirty.  He got strawberry in his hair.  It was a mess.  All the while, my job is not to flip and to follow through with protocol.  And no I'm not the Mom that just wanted to hug it out. I usually want to ring his little neck when he's like that.  No shame.  We managed to finish the meal fairly calmly until the therapist laughed that he had strawberry in his hair.  Cody flipped.  Everybody in the family lounge was amazed to see Cody having such a fit, because he usually pretty calm, especially compared to some of the other kids.  I somehow managed to eat my lunch while managing Cody's fit.  I got him back to the nap room early and he put up NO FIGHT when it was time to rest.  Usually he rolls around on the floor, whines, plays, etc, but today he got under his blanket and went to sleep.  We did self-feeding again at our dinner session and it went much better.  So well, in fact, that they want me to do self-feeding with him tonight at home.  I'm not excited about that, but what can I do? 

John and Cole came to visit over the weekend.  They were planning to stay through today, because Cody was supposed to have his diagnostic interview for an autism.  The doctor actually got a jury summons, so the interview was rescheduled for tomorrow.  John and Cole left on Sunday, since there was no need to be here on Monday.  And thank God the interview wasn't today after that horrible self-feeding session! I'm hoping Cody gets a lot of good rest tonight, since he won't have a chance for a nap tomorrow. The interview is scheduled for 1:00.  Speaking of jury summons, John was supposed to have jury duty starting tomorrow, but he was able to get out of it today.  He wasn't planning to try to get out of it, but let's just say I "strongly encouraged" him to get out of it. Since he's now free from jury duty, he's coming back up to Atlanta tonight and will be here for training at "food school" tomorrow and Wednesday.  I asked him to stay as long as possible, so he's staying until Wednesday night or Thursday morning. The band is going to Busch Gardens over the weekend.  Cole will be spending a LOT of time in Albany with my parents this week.  

At this point in our journey, Cody and I are very ready to go home.  I have had some moments over the last 6 weeks that I didn't even want to go home, because it will be so challenging when we get there.  At least while we're here, I can devote all of my focus to Cody and his treatment.  When I get back to Cairo I'll add the stress of work, taking care of our house, feeding the family, taking care of Cole, and all that comes with it.  That is scary to me, because Cody's new routine is already a lot of work.  BUT I'm burned out.  I'm tired of being a single parent.  I realized today that I've been present for all but 45 minutes of Cody's treatment.  OK some of the time I've been hiding out in Cody's nap room watching Gossip Girl, but no other parent at the Center is doing what I'm doing.  Most parents are switching out daily or weekly the responsibility of bringing their child for treatment.  In other cases, two parents or a parent and grandparent are there together everyday.  There a couple of moms who are the only caregiver I've seen at the Center with their child, but I know they live fairly close by and return to their own home and their own family every night.  I love Cody, but we've had WAY too much together time up here and this is probably why we are sometimes at each other's throats.  All this to say... John and I are hoping they will allow Cody to finish his treatment in seven weeks rather than eight.  We have not discussed this with any of Cody's providers.  Honestly, I've been too nervous to, because they haven't hinted at all that Cody may be ready for release earlier than eight weeks.  If Cody was not doing well with the treatment, there would be no question in my mind that we needed to complete the full eight weeks and they would probably even extend our stay.  They've done that to several families while we've been here.  I guess I'm also a little embarrassed to say to the doctor that part of the reason I want to leave early is to go to the beach with our family.  Maybe I think it makes me look shallow or like I'm not taking Cody's care seriously if I want to leave treatment in time to go to a beach vacation for Spring Break.  I know there are more things for Cody to work on and we could spend 2 more full weeks working on those things, but that would be beyond the original goals that were set for him.  Once John is trained, Cody will have met all of the original goals that were set at week 2.  He will continue with outpatient therapy every two weeks or once and month.  I feel that the things he is working on now could easily be worked on in outpatient therapy. He needed the rigorous therapy up front to get him to even accept the new foods, but I think we're at a place that the therapy can be relaxed and he will still make progress.  But... I'm not a medical professional.  I guess I'm just setting up my arguments for if they don't think he should leave before April 3.  By the way, if he finishes in seven weeks, his last day will be March 27th and we'll move back to Cairo on March 28th. 

Cross your fingers.