Tuesday, August 19, 2008

What we see...Part I

Today I got a comment from Gina which read in part:

In future posts, please write about how those of us who might encounter children and parents like yours at church, in stores, etc., can understand what we see.

I don't really know how to answer that. I don't understand what I see when I look at my children and explaining it to others is even more difficult and frustrating. Just this past Sunday yet another person turned to me and said, "I don't understand. I just can't see Ruth doing anything that bad - she's so sweet." The comment was made because the adults were having a meeting, the children were playing in the gym and Ruth was sitting in a chair in the corner. I think she thought I had put Ruth in time out in the chair. In reality, Ruth had been so inappropriate ( in small barely perceptible to others but significant to Ruth ways) all morning that I did not want her playing with the other children out of my sight. So I asked her to stay in the room where the adults were. She sat herself in the chair in the corner, stared off into space and did not move the entire time, even when I tried to get her attention so that she could come sit next to me. Nope, not bad, just weird - and, trust me, it gets much weirder than that if we let those small inappropriate behaviors go on unfettered.

So, sorry Gina, I can't directly answer your question. But I did figure I could give some pointers on maybe what to do or not do that would put families like ours and those who share their lives with us, at ease a bit. So here is the first installment of my advice to others.

Please don't....

...argue or comment about how we treat our children. Chances are, even if discipline seems too harsh or firm for an infraction, the behaviors are targeted behaviors that are part of a broader behavior plan. On the flip side, we may choose not to exact any consequences even when the behavior seems out of control if that particular behavior is not currently being targeted. I'll give you an example.

Philip is having a lot of trouble with poor sportsmanship. It is part of his disability to want to win at everything and place blame when things don't go his way (autism is a very self-focused condition). He will cry, yell or sometimes just mutter under his breath. He will pout and throw small tantrums. He will blame others for his mistakes or accuse others of cheating. At these times, our 11 yo son looks very much like a 3 year old which isn't so good for someone who desperately wants to fit in with his peers. It is usually his brothers who take the brunt of this. We put a plan into effect to help him with this behavior which was important to us because Philip does desperately want to make friends with his peers. Sports is a great way to level the intellectual and social playing field and nobody wants to play with a poor sport. His "friends" were beginning to get frustrated with him.

So, our goals for this particular behavior plan are to:

1. "Normalize" Philip's sports-playing behavior as much as possible to help him create bonds with other boys his age.

2. Help him improve his behavior on his own so that he can play in all sorts of "sports" settings unsupervised by his parents (who wants to take Mom everywhere?!).

Here is the plan we implemented to help with this area:

1. We defined a sport as any physical activity with another person (or even on the computer). So basketball, soccer, football, hide and seek, foosball, Sprint car racing computer game, swimming in the neighbor's pool, etc are all sports and fall under this plan.

2. We define poor sportsmanship as crying, pouting, arguing, not following others' directions or rules, insisting on his own rules (which he always makes to his advantage), leaving the game as soon as he appears to be losing, blaming others for his mistakes, accusing others of making mistakes they did not make, calling others' a cheater.

3. Philip is reminded every time he begins the sport that: a) This is a sport b) There will be consequences for poor sportsmanship c) We review the definition of poor sportsmanship.

4. At the time we started this Philip, Ben and JT were taking tennis lessons with our neighbor who plays tennis competitively and all were really enjoying the lessons. The consequence for poor sportsmanship in any "sport" was to lose a tennis lesson.

5. Since Tad and I are trying to reduce the amount of time Philip needs to be supervised in group activities, we commissioned JT and Ben as our eyes and ears. They are to tell us the good, the bad and the ugly so that we can handle Philip's behavior appropriately. (And they do tell us all of the above - they are just as quick to give a good report as a bad one.)

The plan is working well. In fact, it was working remarkably well until Philip made the mistake of giving Ben what-for at a tennis lesson. Apparently neither his instructor (our neighbor) nor our neighbor's girlfriend witnessed this behavior but Ben did and he reported it to me honestly. For this, Philip lost his tennis lesson the next week. We knew our plan was working when Philip had a good cry and pout about losing the lesson, then went about the business of proving to me that he could have good sportsmanship as he interacted throughout the week with the neighborhood children. He still had to serve his consequences.

When Philip didn't show up for the lesson and our neighbor's girlfriend heard the reasoning (unfortunately I was having a baby that day) she also gave Ben what-for. She accused Ben of tattling on Philip and informed him in no uncertain terms that he should have some sympathy for his brother because his brother has disabilities and that Ben should not be trying to get him in trouble all the time. She was not aware of our behavior plan, she was very rude to Ben and she underestimated Philip's abilities (it is specifically because he has disabilities that we are trying to help him overcome them to some extent - his disabilities do not give him free reign to act like a weenie-whiner.) In the process, JT and Ben expressed that they no longer wanted to take tennis lessons if they were going to be criticized for playing their part in Philip's behavior plan. So the tennis lessons have ceased - very sad indeed and came about only because someone did not understand Philip's behavioral goals and criticized our parenting of him.

So....in light of this example I can ask you to...

Please do...

....ask us how you can help with our child's current behavioral goals. That question will go a long way and you may have insights into the plan that will help us tremendously. Then I know that I can trust that you understand that you aren't seeing the whole picture and that I can give you a part to play in the behavioral plan, or even hear out suggestions about how to improve the plan.

Parenting these children is a very complicated process. We have a whole team of people involved in their care which includes various doctors, counselors, therapists, parents, friends, grandparents. I am thankful to Gina for bringing up this question and I have long been wondering how to address these questions for the many who love our family and our children and want to interact more freely. I hope this post has been helpful - it is almost impossible to share the depth and complexity of our kids' issues in any way but to invite you to come and immerse yourselves in our home life - so I feel it may fall short. May the Lord have mercy on me as I continue this series and attempt to educate those who desire to share their love with us and become part of our team.


Gina said...

Thanks so much for the response!

It must have been very disheartening for Ben to be reprimanded for being so responsible. Early lesson in "no good deed goes unpunished." :( Fortunately God sees them.

I hope you'll continue to write as you think of things or encounter good and bad public responses to your family, so that we can learn from both.

Don said...

I think you did a great job of explaining a struggle that I--again--can completely relate to.

It is very frustrating as the father of a teenager who is still dealing with these issues to be counseled by others who are basing their assessment of his behavior on the hour or two they see him carrying a candle each week. I know they totally meant well, but for two years I was told that I'm too hard on him, or am making his life too difficult, when all I was doing was enforcing the consequences for his actions (which is not an easy task, especially when the thing you wish you could truly do is just smother them with everything they want, but to be honest--I don't think anyone can handle being handed everything they want!)

But, as I commented before, our job is to give them what they need, and children with special needs require special attention and specific courses of action in order to hopefully achieve behavioral goals. Sometimes they may look odd to others looking into our families.

It hasn't been until recently, when he became comfortable enough with the people in church to begin unleashing these behaviors on them, that they've come to me to see how they can help me promote more appropriate behaviors and hold him accountable for his actions, or asking my permission to issue consequences of their own.

magda said...

I am just coming into the criticisms as an expectant mother. (Don't eat honey and don't drink non-organic milk are some of the pieces of "advice" I've been given.)

I love reading the whys and wherefores of your disciplinary policies. They seem sensible and effective at getting your children to grow the way they need to.

LucisMomma said...

I'm so sorry that Ben was reprimanded, too--for doing what Mom and Dad asked, doing the right thing for his brother. :(

Much of what you said applies to those of us with "regular" kids, too--ooh, that sounds like mine eat bran. I get frustrated with my parents for telling me "don't be so hard on ___" when they don't see the whole picture.

Thanks for the reminder for when I encounter other parents doing what is right for their children.