Dateline

On Friday we watched Dateline on TV and they had a story about Serbia and the care and treatment of children and adults with disabilities. People in Serbia are encouraged to give their children up to the state if they are born with disabilities. The only aid the state offers is a place in an institution where they care for the children. The doctors tell you that you will be shunned by your family, and the costs of caring for the child will bankrupt you, and that the institutions are a place where the children will be with other people like themselves. People with disabilities are shunned in society, even by other family members. They told the story of 2 people, one who did give up their child, and one who didn't. The woman who didn't give up her son with CP was divorced by her husband, abandoned by her family, and is only able to work during the 2 hours a day that her son goes to a special school. They live in a 1 bedroom apartment and she spends all day being the sole caretaker of her son. The man who chose to give away his son with DS never even looked at him, but has spent the last 8 years thinking about him. Dateline found his son in an institution where he spends about 20 hours a day in a crib and the only time he is out he sits at a table and plays with the same lego blocks. He never smiles or laughs, and he needs help walking. He is small for his age, but I don't know how much of that is the DS, and how much is from the lack of movement.

The conditions in the places are awful. Truly awful. Grown adults half dressed sitting on the floor in the hallway. Adults confined to cribs and their limbs contorted to fit in the space they are allotted. Children tied to the rails of the cribs for 4-6 hours, every day. One doctor in charge of a facility that houses 600 disabled people. A child banging on his ear until it bleeds. A community shower where people are lined up and hosed off. Walls peeling and cracking. Cemeteries on the side of the hill with simple wooden crosses marking graves where no service has been performed because there is no money to pay a preacher. Ann Curry touched one of the boys and she told the nurses she could tell that he knew he was being touched and she said that he cries after any of the infrequent visits his mother makes. How could she come and leave him there? The doctor was asked why he let Dateline in to see the condition. "Because no human should live like this." And that is where people are encouraged to send their children. Their poor helpless children. Because that is the best option they have. They don't know what they are doing, but they feel like they have no choice. How many of us do things because the doctor says to do it, that it is the best thing? No one knows what happens there. You know they don't get good therapists or good workers. Who would want to work in conditions like that? The government official who was interviewed said that it was a problem they have inherited from the previous government, and that it will take time and money- lots of both- to make it any better. But it's deeper than that, it takes changing people's perceptions and attitudes. If the people of Serbia shun people with disabilities that strongly, how can there be any change?

That could have been our son. I never thought I would be thankful in that way. I am thankful yet again for the way Justin was born, and now I am thankful for where he was born. I am thankful that I have the burden, whatever that means, of caring for my son. I am grateful for the pain and the tears and the joy and the hope. I could barely stand to watch the show, and yet I couldn't turn it off. Tears were streaming down my cheeks, and they are again as I write this. I am praying that there is a reason I saw that, and if I am supposed to be one of the ones who needs to help affect change, then I want that to be ready and willing. Like the doctor said, no human should live like that.

Back to Work

So we made it! I made it through work, and Justin ate some, and both my mom and Randy are still speaking to me. A true success I would say! With everyone posting pictures of kids starting and returning to school, I almost feel like I should have a picture of me all ready to go to work, but don't worry, I will spare you! I know it's all about the kids!

It was a joint effort I understand. It took both mom and Randy to get a little bit into Justin. They used the trick we used with Travis of bouncing on the yoga ball while holding the bottle to feed him. So Randy held Justin and bounced on the ball and patted his bottom while my mom held the bottle and tried to get him to eat. He did eat some, but mostly he got some milk and let it run out the sides of his mouth. But he wasn't overly fussy and he wasn't overly crabby, so I think it will work. I don't plan on leaving any more than necessary, but now I don't have to spend the whole day worrying about him. And just to make sure I felt at home, we had a baby on the airplane who cried most of the way home from Tegucigalpa. I also flew with a great crew who helped me work out the kinks and helped get me back into the grove. So now I am done for the month and I can be here for Justin. God is so good and I know that he watches over our family the same when we are apart and when we are together.

Hats

Randy had lunch with a former co-worker yesterday and she gave him a present for Justin. She has been making him some hats to wear in the hospital so his head won't be cold! How great is that! And they are so soft, which is my favorite part:

I know his eyes are closed, but it is too cute to pass up! And it has the best little pom-pom.

And this one she made long enough to cover his little ears. I think he was cold in the hospital the first time so I was planning to bring some socks. Now I can bring his hats too!

Training

So I was able to go to training for work on Tuesday. It ended up being a bit of a production: Travis went to stay with Me-Me and Pop and Randy stayed home with Justin. Randy stayed home because we had a man coming for an estimate on the door, and plus it would have been too mean for anyone to try to handle both boys, given that one would most likely refuse to eat and cry instead. And Justin also has been boycotting naps, which combined with not eating makes for a crabby baby.

The plan was that if Justin refused to eat at 10 am (I fed him before I left at 7 am), Randy would bring him up to the training center during my lunch break for me to feed him. And then we only had to make it though the afternoon. I was scheduled to finish training at 6 pm and we often get out a bit early, but I didn't want to promise Randy too much. I have gone to this training every year and we have never gotten out more than about 45 mins. early. This time we were done 2 1/2 hours early! Just in time for Justin!

The moral of the story is we all survived: I passed my training so I can work for another year, while Justin didn't eat as well as we had hoped, he didn't scream all day, so that means Randy agreed to try it again, and of course Travis had a great day with Me-Me and Pop (he won gold medals you see!)

The big test is Saturday: I have to go to real work, where I am unavailable all day long, so there can be no trips to see Mommy at lunchtime. And I will not be home 2 1/2 hours early. I may even be late, given the hurricane forming in the Gulf. Please pray for good weather!

Goings On

So we are working on a few things here at the DeCarlo home, and we have had some successes that I wanted to share.

First I have been working on getting Travis to eat a greater variety of food. Really, he does FANTASTIC. I cannot complain, (he eats spaghetti squash for goodness sake!) but the are some things I want him to try. Last week I splurged and bought t-bone steak. I cut some small pieces for Travis to try and he put the first piece in his mouth and he started to chew. And chew. And then sing. And chew some more. And look out the window. And chew. FOR TWELVE MINUTES! It took him 12 minutes to eat a piece of steak the size of my pinkie nail! At first I said he had to eat all the steak, but by the end I just wanted him to SWALLOW!

So tonight I offered him salad. He has said in the past that it is too yucky, but I know that children need to be introduced to things several times. So salad: I covered it with ranch dressing and I told him he had to try one bite before he could get down. He cried and said it was too yucky, but I got one bite down. And then he ate another. And while we were eating our dinner, he ate the rest of the salad, and even said that it was tasty- without prompting! Wow! Tomorrow could be another story, but yeah for today!

The other thing we are attempting is potty training. I figure if we are stuck at home, let's try at least. He sits on the potty and pushes until is face turns red and then says, "Not working." So I noticed that he always goes pee-pee in the bathtub so I put his potty in the bathtub so his feet are in the water and that makes him go. The past few nights we have been having successful potties with more each time, and more quickly too. The first time he did a few dribbles, got his sucker, and then peed in the bath water afterwards. Tonight I told him that he had better get it all out because Justin was going in the bath and I didn't want his pee in with Justin. And he likes it when Justin takes a bath with him so that is an incentive. He did GREAT! We had several dribbles (and Randy is teaching me all about how to know if he's done or not) but overall, very good. And he even got out of the bath and asked to sit on the potty and he did more. I know it's a process, but I am encouraged, and that is enough to keep me going. Now we have to work on the morning. He pees between his bed and the door, so I have to camp outside his room to get him before he opens the door. Not looking forward to that...

The DeCarlo Olympics

So since we have been watching the Olympics, Travis has developed and interest in gold medals. So Pop decided to help him make some medals of his own. This is not the first time they have worked on crafts together. The first project was a tunnel for the electric train. They painted it together. Mabe it would be more accurate to say that Travis painted himself AND the tunnel. It is a very interesting looking tunnel, but Travis is VERY proud of it and he talks about it all the time. The first round of medals included one for Travis teeth brushing and one eating all his dinner. Justin's medal was just for being number one. Today, Travis got one for being a great big brother and for running laps on the deck outside Me-Me and Pop's. And this time Justin's medal was for tummy flips and bravery and heart fixing.


Not sure why they didn't win for thumb sucking:

And last week we had a friend stay with the boys while I ran an errand and she let Travis take pictures with her camera. So now he wants to take pictures all the time. We may need to work on that:

And this one is just too cute not to share:

Back to Normal

Whatever that is, we are back to it. The bags are unpacked and scheduled rearranged and Randy is back to work Monday. Sleep hasn't been recaptured, but who can expect that given the age of our children?!

Justin is doing amazingly well. He is up to 11 pounds and he is kicking his legs like crazy! He has started trying to support himself on his legs and the jumper is really helping with that. Travis likes to play with him in the jumper too.

He is doing very playing by himself and he is ALMOST rolling from back to front. He rolls halfway to his side and then he finds his thumb and that is enough. He has no incentive to go the rest of the way! But we are trying and maybe this extra time will get the roll accomplished.

Justin is also becoming a musician. We have the little animal keyboard, and he actually reaches out to touch the keys and make sounds. It is very cool! Little things amuse us at our home!

He is also talking up a storm, especially when we are watching TV or talking on the phone. I think he wants to be included. Soon, little man, soon!