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!"

Sunday, November 03, 2013

Six Months Home

*note* This post has taken me a week to write. I want to be honest about our difficulties, but I also don't want it to seem like we are miserable or something, because that could not be further from the truth!

The first picture we ever saw of Abel,  received on Christmas eve 2012.

For six months I have been Abel's mother.

Six months ago I really couldn't picture what life with him in our house would be like. In my mind there was just no way to take all the stimming, the aggression, the hyperactivity, the high anxiety, the Furby-like non-human noises, the finger biting, the pacing...there was no way to form all of that little boy into a shape and insert him into the puzzle of our family. We knew we had to make a place for him to make it work. To make US work.

Many of you read along on our adoption blog. You saw my panic at the thought of Dean going home early, leaving me to get this feral little boy all the way home on the other side of the world. I had done it with Axel and survived, but honestly, Axel didn't hold a candle to Abel.

I was scared. We were scared. Every adoption puts a family closer to self destruction as the envelope is pushed a little further by bringing another unrelated child into the home. A family could adopt 20 kids and never have a problem, or they could adopt one child and implode. Our risk was high since we don't adopt the "easy" kids. We adopt the kids nobody wants; the older kids, the older boys, the older boys with Down syndrome. But we also knew we were doing what God intended us to do. And here we were, with this little boy who required, at a minimum, two adults with him at all times, hands on. How would we do this?

We had to teach him that he was safe. That was our first priority. That he would always have food. That he would never feel chronic hunger or thirst again. Safe. Trust. He needed to learn trust.

There were so many things this little boy needed to learn.

I don't believe the phrase, "God doesn't give you more than you can handle." If He only gave us what we could handle, we would never grow. We would never learn about ourselves. We would never find our own weakness and fix it. God challenged us with Abel. He took all of the challenging behaviors Angela, Axel and Asher have, multiplied by three, rolled them all around, unfolded his hands and there was Abel.

There were people who doubted our ability to bring Abel through the changes needed to be comfortable in the world outside the institution. There are people who think that our house is similar to a small institution and that Abel would never learn how to "be" in the world. Unfortunately they can't actually see inside our home to see how normal our family is.

I don't even know where to begin when describing all the things that needed to be done to bring Abel through to healing. I'll just list some of the most difficult things.

Severe Anxiety: Abel's level of anxiety was through the roof. He could not sit still in the house, instead constantly pacing and worrying about everything, and I'm sure plenty things we didn't even know about. It was impossible to bring him out into the community with his level of anxiety. The child was absolutely scared to death, which was expressed by very aggressive and destructive behavior. It was evident that until we addressed his anxiety, Abel would not learn how to function outside of the house. Finally we talked to our pediatrician who agreed to try a trial of anti-anxiety medication. Our hope being that with his anxiety decreased he could learn he was safe when out of the house, and eventually we could take him off the meds. Within about three days of starting the meds Abel was a different child. His anxiety level dropped by at least half! Suddenly we were able to take him places that made him (and the rest of us) miserable before. Like a doctor's office! Now we can take him places without him panicking as we walked through the doors.

Severe Hyperactivity: Some of you know Angela in person. She is a very busy young lady and that is with lots of help. Angela is a sloth compared to Abel's level of activity! However, I was convinced much of his hyperactivity was related to his high anxiety, and I was right! Abel's activity level is now GREATLY decreased. He's no longer pacing, and can actually sit down to an activity for quite some time because he's not so worried about what will happen next.

Unusual Noises: This was something that was a problem for us, not necessarily a true problem. Still, I felt that some of these noises were also related to his anxiety, but some of them were the communication he had developed. Since he was starting to sign, he didn't need to make snorting horse noises when he disliked being told to do something, or his raccoon noise when he was curious about something. These noises are gone as long as the routine is not changed and things are predictable. As soon as there is something new, or he becomes over stimulated, the wild noises start up again.

Throwing furniture: In the institution Abel made a habit of throwing furniture. I'm not talking just the kid-sized chairs and tables. No, he threw full-size pieces of furniture, flipping larger things end over end. He mostly did this to get what he wanted by "threatening" to throw something if he was told no to a request. A couple months ago we walked into a new doctor's office. The very first thing he did was walk to the bookshelf to see if he could lift it. Then he looked at me and I could see by his face he remembered he's not supposed to do this. I haven't seen this behavior since then. Interestingly, we also got our sensory room up and running around the same time. I have him doing lots of "heavy" work; lifting things, rolling a medicine ball up the stairs then carrying it back down, etc. I think this has helped too.

Anxiety Urination: This has been pretty frustrating to deal with. If we take Abel anywhere new he is afraid and will pee his pants. We can see the panic on his face right before he does it.  If we go somewhere familiar but a new, unpredictable activity happens there, he will pee his pants. Now if we go somewhere new, or to something we know is difficult for him (like doctor visits.) we just put a pull-up on him so we don't need to worry about it. I would like to get past this phase though, because I don't like putting a pull-up on my toilet trained 10 year old! It will take time, and he will get there in his own time.

Abel also uses urination as a control to get out of things he doesn't want to do. He starts school next week, so we have been visiting a lot so he can get used to the environment. I always put a pull-up on him first. ;-) One morning we were there for Morning Meeting. I had brought him to the bathroom just before it started, and about 5 minutes into the activity he asked to go to the bathroom. I told him "Bathroom is all done." and turned my attention back to the activity. Oh he was NOT happy with me! He looked down at his pants and I could see he was trying to make himself pee. He tapped me, then pointed to his crotch and signed bathroom. The look on his face said something to the effect of "There! You wouldn't take me so I peed my pants! Now you HAVE to take me!" Only I completely ignored him. Oh he was MAD. That's when he decided to try flipping his desk over instead.  Now, Abel is perfectly capable of sitting for morning meeting. We've been doing it in the comfortable environment of home for months and he didn't have 1:1 assistance! This was pure manipulation at it's finest and he learned that Mama doesn't play. The very next day we went back. This time when he went to the bathroom before morning meeting he intentionally ripped off his pull up and handed to me. Unfortunately for him I was prepared and had more. Oh he does NOT like it when he's outsmarted! Knowing how Abel thinks, I know that after a few days of not responding to his attempts to manipulate the situation he will stop trying and settle into the routine.

Behavior with new people: Some of you have been reading here for a long time, including the period of adjustment to school for Axel when he first started going. It took Axel several months to figure out he had to behave in school, and it took finding the ONE motivator to make it work. Now he rarely has any problems in school. Abel thinks a lot like Axel does, and I think I'll be able to use many (though not all) of the same techniques for him to realize behaving in school is not negotiable. Likewise, when we have people to the house, all the excellent behavior he's learned over the past 6 months goes right out the window. The noises are back, the anxiety, peeing his pants...everything. Its because we are out of our normal routine and he has a really hard time with that. Granted, for the most part  he doesn't acknowledge the new people here (with the exception of checking out Grandma's oxygen tank!) And so it's time to make some targeted activities happen at home, including having people over frequently. Abel, welcome to Mama's boot camp!

So what does this new Abel look like at 6 months home? He is extremely helpful. He is always cleaning up whatever room we're in, putting things away in their proper place. When he and his brothers are changing clothes he is all business. Since he's the first one done he is quick to gather up their dirty clothes and put them in the laundry. He eats any kind of food we put in front of him (though he's not super happy with finger foods!) and no longer has extreme anxiety about foods. He loves to hang out in the kitchen and help get ingredients for me. If I take peanut butter out of the cabinet, before I can even turn around he has four plates on the counter, bread and a knife for spreading! The other night we were getting ready for dinner and he took out 6 plates. Nobody counted for him, nor did he count them, but he knew there were enough. One day I had someone here working with Angela. They had the names of all family members written on 3x5 cards laid out on the table. Abel walked past on the opposite side - so the names were upside down for him - pointed to his name and kept walking. I haven't really worked with him on his name so I was impressed he picked it out!

When Abel knows the routine and life is predictable he is excellent. Its when we throw something new into the schedule that he struggles. But this improves every day! Tomorrow he is starting school!!! I'm excited for so many reasons, but mostly because I knew how smart he is and how quickly his world is going to open up for him!

Abel's ability to communicate blows me away. I have lost track  how many signs he knows. Last week he tried a pickle for the first time. When he saw it he signed "eat banana", generalizing the shape and realizing it was similar to a banana. We showed him the sign for pickle so he signed "eat pickle please". He is able to ask for things out of sight, he can sign things like "tie shoes please", "want milk please", etc. He is always excited to go places, asking "Shoes on" to see if it's time to go yet. All of his communication is in sign, and he learns new signs as quickly as we can show them to him. Tomorrow he is getting fitted for his new hearing aids, and my hope is his attempts at speech will be more successful once he's able to hear.

Last night we had relatives here for Asher's birthday. For the first time Abel showed some reservation about hugging someone other than Mom and Dad (so did Asher!). He clearly knows who Mom and Dad are and is well-bonded to our family.

I can't imagine Abel not being here, being part of us. I look back at the wild little boy we met just six months ago, who really had no hope of ever finding a family of his own. He's ours now. He's amazing. He's brilliant. He's confident. HE IS LOVED!


Melissa said...

That deal with the pullup. What a smart cookie he is, when given the chance to show it!

Unknown said...

What a beautiful post. Thank you so much for sharing. :)

With Logan, we ended up using pull-ups OVER his underwear. He didn't like the wet feeling . . . and it was less messy (especially at school). We told the school they could throw away underwear whenever it was necessary.

Stephanie said...

Great updating post......I've been wondering how things are going with him and the rest of the crew. Your kids really are blessed to have you and Dean; you work really hard to help them navigate the outside world even if it's tough and scary. Keep up the great work......and we'd be happy to be some drop in guests for your boot camp if you need us!!

Scarehaircare said...

I prefer to say "What God gives you, you can handle with HIS help." I certainly cannot handle these challenges I have on my own. I have to do the best I can with what I have and then turn it all over to Him.

I love how real and positive this post was written.

Imogen said...

Thank you so much for sharing!

What a handsome boy, and what a clever one to boot. That ripping up of the pull up - oh my, how do you keep a straight face?

Loooove the last pic; he looks so beautiful and happy :)

Mandy Beth said...

The change from the Christmas Eve to eating with you in Serbia was big. But from Christmas Eve to now? You and Dean have done amazing work! Who doesn't get anxiety at times? Abel just had no help in getting over his fears, when they were conditioned in and he had a terrifying small world. Every single thing is new and his conditioned behaviors no longer work. Heck, I'd pee from anxiety!

But, Abel is doing better. He's a very smart young man who just needed the doors open for him to learn. He's getting that with you. He's learning how family and a home are the best part of life. He's learning to show his needs and wants in ways that work for all. Sure, he's a stubborn boy, but that's worked for him. He's willing to learn new ways, and that's better than many people who had the "normal" life growing up.

Congratulations all around for six months! Because, now everyone can see the handsome, smart young man Abel is.