January 12 – The best laid plans of mice and men…

"To a Mouse" by Robert Burns

“To a Mouse” by Robert Burns

Our church offers a children’s program, AWANA, on Sunday nights and Ana truly enjoys attending. However, her behavior keeps her from participating in most of it. For the past year a volunteer with the church’s special needs program has been her aide and all has gone mostly well. Unfortunately, the aide’s son has his own special needs and she can no longer leave him alone to help Ana, putting us back at square one.

I will interject that the AWANA curriculum is great for typically developing (TD) kids, but not so hot when one puts on their special ed glasses. Each evening is broken down into three activities (each lasting about twenty minutes): lesson, games, Bible verse memorization and recitation. Kids are in classes based on grade and by gender in the upper elementary grades.

AWANA always begins with everyone (three years old through fifth grade) together in a large room. In our church that is usually about 75 kids. They hear announcements, sing a few songs, learn a silly dance, award winners (for verse memorization) are announced and then they are dismissed to rotate through the three areas.

The time frame for the entire night is one hour and 45 minutes.

Problems Ana encounters:

1) There are WAAAAAAY too many transitions for such a short amount of time. We’re talking five transitions!
2) The games are in a gym with about thirty to forty 8-11 year olds (sensory overload big time) and are not disability friendly so Ana can’t play. She has to sit to the side and watch while being bombarded with kids screaming and running in a small gym with no windows.
3) The curriculum is very abstract and assumes that kids have been immersed in Scripture since birth. Not only does this exclude kids new to church, but it also excludes kids with learning differences or delays.
4) There is a LOT of unstructured time. This does not work so well with a lot of kids – not just Ana.
5) The more Ana acts like a goof the more kids stare at her. The volunteers are not trained in special ed and have no idea how to handle social situations with a special needs kid.

Now that you understand the limitations to AWANA, I’ll admit that it is a great way for churches to reach elementary age kids and engage them in fun Christian studies.

As long as you’re TD.

So, knowing the reality of AWANA and wanting Ana to be successful I spent all Sunday afternoon adapting her lesson, putting her Bible memory verse on the iPad and working up a successful behavior management plan. She has a new assistant working with her (from her school so she is not NEW new) and I wanted everything to be in place so that Ana could have a great night.

We pumped her up about how awesome she was going to do. She was excited because she was going to totally nail her Bible verse. She even chose her reward for good behavior.

Then we left the house.

It started falling apart in the car. For whatever reason Ana started talking about going to Daddy’s house. I tried to shut her down but to no avail. Next came the screaming. I told her if she was going to be loud she couldn’t stay at AWANA. That did nothing but further tick her off.

I couldn’t turn around and go home because Drew was in the car and I had to drop him off. When we got to church I told her she had one more chance to stay at AWANA. That was met with screaming, kicking, and threats to hurt her siblings. It got so bad I had to restrain her in front of all of her peers and she still managed to get in a good head-butt.

To say the least we went home.

I dropped her off with my husband to deal with her. I HAD to take a break. She continued the fit.

When I came home later with Drew after AWANA I was met at the door by Ana who told me her step-dad hit her in the head. Not like a little hit, but banged her head against the desk. Obviously, I asked him what happened.

He explained that she was mid-fit and while trying to restrain her (because she was trying to kick a hole in the wall) she threw her body back and hit her head on the bed frame.

That is Ana. She always blames others for the consequences of her choices. We are crossing our fingers, saying prayers and hoping and wishing that CPS doesn’t come knocking because of these type accusations. Thankfully, everyone at school knows Ana and knows to take what she says with a LARGE grain of salt.

As for AWANA, we will try again next week.

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“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.