“I don’t know how you do it”

Ana's baptim

Ana’s baptism

The phrase I hear most often from people is also the phrase that annoys me the most: “I don’t know how you do it.” I’m not sure if that is a compliment, a sincere statement, or a judgment.  No matter what it is I usually just laugh and say something like, “I just do,” or other such nonsense. If someone catches me on a particularly bad day I might say to them, “What is my other option?” That one always stops them dead in their tracks. But I sincerely mean it. Seriously, what else can I do with my daughter?

I suppose I could put her on a plane headed back to Russia like that one family did. Or, I could treat her like a dog and keep her medicated and caged. I could believe some of the experts who claim she is severely mentally challenged and can’t control or understand her behavior. Then I could just slap a helmet on her head and leave her to her self-injuring without worry.

But I’m not going to do any of those. Ana is my daughter and no longer Russia’s problem. She is a human being who is struggling with one of the worst, most disabling conditions put upon a person through no fault of her own (RAD) – not an animal. She is not broken or less of a child. Her cognitive skills are normal which is half the problem; she completely understands what is going on around her. She is simply a little girl, lost in her own body and this very scary world, and I’m going to die trying to be her anchor.

I’d like to think that anyone finding themselves in this situation would do the same things as I have, and I used to say that to people in response to the Annoying Phrase. But I have found that not to be true, unfortunately. Too many parents quit on their kids when things get tough.  Of all my strengths, I value my tenacity the most. Quitter, I’ll never be!

Lastly, or firstly, I wouldn’t be able to do any of this without my faith in God. I know a lot of special needs parents get annoyed with well-meaning friends and family who tell them that God only gives us what we can handle, but I don’t. I know that is true – absolutely true! Ana is proof that God used all my strengths, weaknesses and past experiences to make me the best parent for her. Yes, God gave me a gianormous job to do, but I feel honored that he has so much faith in my ability to do it (with his help, of course). Without my faith that God sees the big picture and it’s not my job to understand where I fit in it, I would have given up a long time ago.  It’s the same faith that allows me to praise Him and find joy even on the hardest of days with Ana.

So, even though I don’t give this long answer to people when they tell me they don’t know how I do it, I think it, and after I get passed the urge to slap them, I use the moment as an affirmation that I am serving God, good day in and bad day out, helping Ana overcome her debilitating first 20 months.

Applied Behavioral Analysis

Applied behavioral analysis is a wonderful method for controlling and changing challenging behaviors. From the first time I heard about it I was hooked. We have been using it for over five years now with varying levels of success. Ana’s school uses ABA 101 (as I call it) but are not seeing as much success. With Ana’s Medicaid waiver she receives an ABA therapist to help us with managing her behaviors. Unfortunately, for ABA to work, there must be an intensive beginning to the therapy which Medicaid won’t pay for. The person manipulating the ABA plan must really understand the child to make it work.

So, what is ABA? I’m providing a very simple explanation but will share some good links at the end.

The first thing one must do is identify a problem behavior. I’ll use kicking a child as an example. Next, you observe the child doing the behavior to determine the function of said behavior. The most common ones are attention, escape, avoidance, communication. Let’s say for this example one observes that a child kicks other children as a way to escape crowded situations. They escape because an adult removes them from the situation after kicking.

That leads us to the ABCs of ABA. A is for Antecedent (what leads up to the behavior). B is for Behavior (the problem behavior being changed). C is for Consequence (what is the consequence of the behavior).  In this example situation the antecedent is being in a crowded situation; the behavior is kicking another child; and the consequence is being removed from the situation.

Now, we’re ready to execute change. The goal is to manipulate either the antecedent or the consequence to change the behavior. In this case, we can manipulate the antecedent to prevent the behavior since we know its function is escape. By avoiding crowded situations the child will not need to escape, thus they will not kick other children. In a real life setting this would look like allowing a child to sit in a special chair a few feet away from other children during rug time in the classroom. Or allowing them to sit on a bleacher by themselves during school assemblies.

ABA can be used for virtually any behavior. One of the problems we have experienced is that Ana’s behaviors often have multiple functions (depending of the situation) meaning multiple plans are needed. Also, once we manipulate the antecedent or consequence, Ana sees it as a personal challenge to out-smart the manipulation. We haven’t given up and still use ABA (school uses it a lot) but are constantly looking for new ways to implement it.

My observation after using it for years is that it is like training a monkey. Sure, Ana can learn to perform , but ABA doesn’t address the real problems causing the behaviors. That is why we are hoping that attachment therapy will FINALLY help stop the behaviors from within.

Helpful links:

http://en.wikipedia.org/wiki/Applied_behavior_analysis

http://psychology.about.com/od/behavioralpsychology/f/behanalysis.htm

http://appliedbehavioralstrategies.com/what-is-aba.html

November 28 – Happy Turkey Day!

What a nice playroom!

What a nice playroom!

Today was Thanksgiving. We survived and Ana did pretty well. Of course I should say my bar is set pretty low; it’s a good holiday if we stay away from the ER and the police aren’t involved.

Ana started the day good but her agitation grew with the hours. She really wanted to go to her father’s house or her grandparents. We have explained to her all week that she will not be spending Thanksgiving at either house, but once she gets something in her mind it doesn’t matter what we tell her. I’ve heard this is quite common with RAD.

We had our big dinner at lunchtime (just the immediate family) and Ana started to throw her plate, for no apparent reason,  so she was nicely asked to leave the table and go to her room to calm down. She did. After lunch was finished and cleared away she decided she wanted some lunch. But she didn’t want Thanksgiving – she wanted Korean. This is something else I’ve heard is common with RAD – wanting things that are impossible to get.

To say the least she did not get Korean. She settled for some turkey and dressing followed by chocolate pie.

The rest of the afternoon her agitation grew with a few outbursts. She did spend a lot of time in her room.  We have started to wean her off spending time in her bedroom because she simply festers in there. It’s like she has a running internal dialogue about her dad and us not letting her see him and the longer she is left alone to stew the more worked up she gets. But we figured since it was a holiday, we’d take a chance and let her spend time alone so the rest of the family could enjoy the day.

By bedtime she was ready to blow. I asked her if she needed a sleepy pill (that is what we call her emergency sedative) and she said yes. That is a step forward. Usually she insists she doesn’t need it. For the last week I’ve been trying to get her to correctly identify her emotions and take ownership of them. Baby steps – I’ll take that!

Disclaimer

I am not a psychologist. I am not any type of medical professional. I have never been trained in mental health or counseling. I am just a mom living with a kid with reactive attachment disorder. Therefore anything I say on this blog is not professional advice and is not intended to be used by any other family. This is simply what our family is doing to try and help our daughter.

November 27 – When ABA doesn’t work

This is the sort of environment that created Ana

This is the sort of environment that created Ana

Today was a trying day. Ana is off school for Thanksgiving break which means lots of down time. Our mantra is “A bored Ana is a bad Ana”. There was a lot of bored going on today. Also complicating the day is that she wants to go to her dad’s house tomorrow for Thanksgiving. She has not been able to go for over six months and she gets very upset when her brother goes. So, I heard about going to daddy’s all day long. And then that made her mad. Ana has two emotions – mad and happy. Part of the attachment therapy is helping her express sadness. We are not there yet. I spent a lot of time talking to Ana about how we show we are sad versus mad.

Nonetheless, I had to restrain her several times for self-injuring and she wanted me to just hold her about every thirty minutes. All. Day. Long.

I try to switch up behavior techniques to keep her guessing (otherwise she can manipulate them to her whims). We had a lengthy car ride today so I bought her a slushy and she had to earn sips by being quiet and safe. Otherwise, she would watch it melt (can you say natural consequence pro?). That worked for two sips and then she just didn’t care. Success and failure.

November 26 – Jealousy issues

potty training

potty training

Today was pretty good for Ana. Her agitation was markedly decreased when I picked her up at school. She did get upset at home because I was helping her sister make a movie. She was jealous of my time but there wasn’t much I could do about it. She did earn bringing logs to the porch as a consequence for throwing a fi but she did it without much fuss (mainly b/c I helped her).

At bedtime she was making lots of yucky noises (still because I was helping her sister) and I told her she had to go to bed if that was what she was going to do. She protested a lot and promised she’d be quiet. I told her I’d give her one more chance but if she made her yucky noises she was going to bed – no questions. She said she understood. Less than three minutes later she went to the bathroom and started screaming. When I told her that was her last chance and it was bed time she didn’t argue. She took ownership!! This is a huge milestone for us!

Once in bed she made a little noise but was not destructive or self-injuring.

 

About the pictures

Inside a Russian baby home

Inside a Russian baby home

Unless you have been to an international orphanage you can’t really understand them. I kind of figure it is like how tornado survivors say you just can’t imagine the destruction unless you see it first hand. With that being said, I have been to quite a few Russian baby homes and orphanages. That is my only experience. Orphanages, like everything else, range from awful to great, depending on the workers, the sponsorship and the region in which they are located.

I’ll be sharing pictures I took while in Russia as well as others’ pictures in an effort to build awareness and understanding. I’ve heard that other orphanages around the world are similar to the ones I’ve seen.

I know that orphanage life does not apply to those whose children were adopted from the US, but a little awareness never hurt anyone, right?