Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, May 28, 2013

1 Month Home!

Can you believe that we've been home with Abel for a whole month? We came home on April 27th. In many ways this month has been exhausting, but I always feel this way when we come home. It takes some adjusting to add an older, traumatized and very mobile kid to the routine of the household.

The first week home, mornings were very stressful. We have a pretty set morning routine and Abel didn't know how it worked. When I was trying to get Angela eating and out the door, Abel was at the table fretting about weather or not he was going to be fed, grabbing everything within reach, etc. Then, by the time the boys got up Abel was done eating which meant he needed to be watched very closely. It was a bit chaotic and made me feel like I was always one step behind. But now, one month down the road, we have our new morning routine! Angela gets up, dressed and to the table. While she's eating Dean wakes the boys up. By the time all the boys are done using the bathroom Angela is ready to get in there and get teeth/hair/face done. (We do have another bathroom downstairs but Angela needs help with personal hygeine in the morning and it's easier to use the main floor bathroom) By the time Angela is ready to leave the boys are eating breakfast. Then its off to get their teeth/hair/faces done, Axel leaves and the little boys get dressed. Dean walks Asher to the bus and Abel *always* goes along! The whole morning process, from the time I get Angela up in the morning until Asher is ready to leave takes one hour. Once he's ready the little boys have about 1/2 hour to watch a Signing Time video. We could absolutely do the routine faster if we needed to, but right now our mornings have a nice flow and nobody is stressed out our being rushed out the door. Well, unless they are causing some kind of problem as TEENAGERS sometimes do!

When we first came home we couldn't take our eyes off Abel for even a second. He has this thing about wanting to move anything heavy just for the sake of adult reaction. I'm talking things like couches, dining room tables or heavy dressers (which happen to be bolted to the wall!) In the institution he would do this to get the caregivers attention. It worked great because they would come running and give him whatever he wanted. Yes, it gets us to come to, only to put him in the time-out spot and remove all attention. I am happy to say we don't see this behavior anymore unless he is extremely stressed, which I'll talk about in a minute.

When we came home Abel was in diapers 27/7. I really don't understand this at all. Why the caregivers in the institution would want to change diapers on a 10 year old boy is beyond me! It took one weekend and Abel was completely out of diapers with only an occasional accident. Now accidents are extremely rare and we don't have to tell him to go anymore because he tells us. He is dry at night and he has yet to wet the bed. YAY ABEL!

We have started making the rounds to all the doctors. He has seen our regular pediatrician and had 17 vials of blood drawn which required a small army to hold him down. I still need to collect stool samples and bring those in. At the time of his medical appointment in Serbia he weighed 48 lbs. Now he is 53 lb and rock solid. Seriously this kid is all muscle. He is only about 1/2 in taller than Asher but is 10 lbs heavier. I expect he's going to shoot up very quickly so, although he and Asher are wearing the same size clothes, I'm keeping all Axel's outgrown clothes handy. ;-)

Last week we started doing assessments for school. With both Axel and Asher I waited until they'd been home around 3 months before doing this. Unfortunately they had lost a lot of their Serbian by then  so we couldn't really get an accurate picture of what they knew. Also, if we didn't get it done now we'd have to wait until fall, which would mean he wouldn't start school until November or December. I decided to get Abel testing done now so he can start school in October (more on that later.) Anyway, when we arrived at the office for testing, Abel was pretty cooperative. We were working with an ST who has known our family for 10 years, working with Angela when we first moved here and Angela was on home-bound school services. She also did both Axel and Asher's assessments when they were adopted. So here comes Abel, fairly cooperative and just a tiny bit silly. We did a few things as we waited for the translator to come. I was happy to see the face of "I." come in. She translated for Asher when he had his surgery and has done some document translation for me as well. She's very nice. Anyway, she entered the room and introduced herself. Abel stared at her a minute, then his eyes glazed over. He gave his manic laugh and the craziness began!!!! He started trying to flip the table over, threw every piece of testing material, hitting, kicking, screaming. He was absolutely manic!!! All of this was done while he was laughing.

We can only guess what was going through his mind. Believe me, we have thought of every possibility. We were NOT in a school setting, so this shouldn't have triggered the whole "being in an institutional setting" thing. We were in a small room without noise or distractions. Before the translator arrived he was fine. When he heard the Serbian is when the trouble started. Dean and I decided that Abel's hearing Serbian triggered the behavior he always displayed in the institution. Think about it: Abel wasn't out in the community getting a wide variety of experiences. In Serbia he was a boy who did what he wanted, when he wanted. When he didn't want to do something he destroyed the place. That's what he was doing during the assessment. He heard Serbian and went right back to the little boy we left in Serbia. This screaming, throwing, kicking, hitting, destroying everything went on four AN HOUR before I came to my senses. I pulled out the crackers I had stashed in my purse. The interpreter told him "You do x, you get the cracker." That was all we needed to do! For the next 1/2 hour he did pretty much everything we requested of him then turned to me with his mouth open for a bite of cracker. We were able to find out that, in Serbian, he knows his colors, shapes, the letters of his Serbian name, he can short shapes by size and he can copy horizontal and vertical lines being drawn. I'm a bit nervous about him starting school in the fall, but our district is great in working with me to ease the boys into the setting slowly.

When the assessment was done Abel did NOT return back to normal. He spent the entire day in screaming fits of rage. It was a very physically and emotionally difficult day. I did decide that although we have translators arranged for a couple upcoming visits, I'm canceling the translators. I just can't do that to him, or us, again.

Sleeping is not going so great. I know he needs his tonsils and adenoids out, because they're huge. I have heard him choking awake many times! But he does other things too, more of general sleep disturbance. He rocks most of the night, either sitting up or log rolling. He also wakes up and tries to wander the house around 2:00 a.m. every night. We send him back to bed where he just starts rocking again. Sleep disturbances are very common among kids with DS. Without medication Angela stays awake for DAYS at a time, only sleeping a few minutes here and there. My guess is once  his T&A are removed we'll be doing a sleep study to find out what's up.

Abel and Asher continue to be great buddies! As I'm writing this, they're standing in front of me playing a little game of copy-cat. Abel is the leader. ;-) The giggles are a joy to hear! Oh yes, sometimes it disintegrates into wrestling. LOL

On the communication front, Abel picks up signs as fast as I can remember to show him new ones! He doesn't really like to watch Signing Time yet, but little by little he's liking it. He's signing A LOT, and if he can't think of a sign for something he just makes it up. He often requests things that are out of sight, he asks if he can put his shoes on (in hopes we'll take him somewhere if he does!). He asks to eat, and drink. He asks for more of whatever we're having.

Abel has come so far in just one month! It hasn't been easy, that's for sure. It is built into him to try to manipulate the environment in negative ways to get what he wants. We have 10 years of that to undo, and it's going to take a long time. There are many days I have to pray, asking God to show me things from Abel's perspective so I can figure out how to manage whatever the problem is. Believe me, there are many times I screw up. There are lots of tricky parenting situations every day. Then I remind myself that these aren't just "parenting situations". These are "healing and therapy" sessions that most parents have never seen, much less had to deal with themselves. Most of our support system has no idea  what we're talking about and I'm sure we come across as overly strict by not allowing certain things. Sometimes explaining the hows and whys is more exhausting than dealing with the issues themselves.

1 comment:

Carrie said...

I very much enjoy reading your blog. I learned of you from The Road DOWN Home when you were going to bring Abel home. You are a Superstar in my book! I read your accounts of what and how you interact with your kids and I wouldn't even think about questioning your parenting. But I am sure you feel like you are on an island as there are not too many like you and Elizabeth.