A Difficult Lesson to Learn

I went to a seminar at the DSAH this morning on practical solutions for educating students with Down syndrome. I went to this event without Randy, and I so wish he could have come with me! The DSAH brought a speaker from Kansas City, Bridget Murphy, whose son, Jack, is 18 years old and prepared to graduate from high school this spring. This was very different from other events I have attended, particularly educational events, because so often it's a doctor telling people what studies have shown you should do and what will work well. Or it's a parent just saying that it's okay to feel what you're feeling, it's tough, and we're all in this together. This was a parent saying, "I have been there, and I didn't get it right all the time. This is what we found works well, and this is what you might want to try." It was great because it really spoke to families of all ages. She took very specific questions from parents struggling with particular situations, and she had some great ideas to try. I think she touched everyone in some way in the place they were at. She asked questions and she allowed people to admit failures. Heads nodded throughout the entire seminar. She said, "Doctors give you the news that your baby has DS, and they list the heart defects, intestinal issues, and developmental delays your child will face, but they do not tell you that your child will never want to leave the playground!" So many things that aren't published in books, but things that can only be gleaned from talking with other parents.

I was really impressed by many of the things that I have already learned from just regular parenting books, but that need to be tweaked and adapted for children with DS. For example, when kids throw tantrums it is best to ignore them because they are often seeking attention. Well, kids with DS are escape artists, and if you go too far away, even to another room in the house, you might find them gone. But cell phones have helped her solve some of the problems. She can still be near enough to prevent escape, but the cell phone (on a fake call!) allows her to divert attention and often stops the behavior!

She told some amazing stories of escaping (which she calls eloping, because when you elope you sneak away), letting kids deal with natural consequences, and fostering independence. Her son is very independent: he holds a job at a local restaurant and bring in more business than any other employee in any of the restaurants in the chain, he stays home by himself and he goes on dates about three nights a week!

It was a good lesson, but so hard for me! I love having all the information, but knowing it means I should do something about it. Repetition is one of the words I hear most frequently. Twelve to fifteen times for most children to learn something. I can understand that with a skill or task, but she was referring to things like not running out of the room without permission or getting in line when the recess bell rings. I couldn't help but break down in the car on the way home, again, and ask God if I am really the person for this job. Am I prepared for the time and energy this will take? What about Travis? What about Randy? And selfishly, what about me? I do not feel one ounce of prerequisite ability to do this job that God has given to Randy and me with full confidence. I understand about daily bread, and the need to return every day to the source of all strength and power, but sometimes the tides come too fast and too continuously for me to bear. Truly, is here ever a time that I, or any other person, would have said, "Okay Lord, I know enough, I am fully prepared for a child with DS. Bring it on! I know I can do it!" Never. That's not what God expects or wants.


Bridget Murphy pounded home the reality that whatever behavior issues are not dealt with now only become bigger and stronger as the child grows. Is my time running out? Will I still be influential in the kids' lives in five years? twenty years? Knowing what is to come brings that huge lump into my throat and I feel every in- you can imagine: in-capable, in-adequate, in-sufficient. It reminded me that I was supposed to have learned this lesson during surgery. Randy and I are not doing this alone. We have a tremendous wealth of resources! Why does my mind go blank and all I can see is the huge wall in front of me?

I suppose sometimes I just need a good cry (which I wouldn't recommend while driving) because I do eventually seem to come out better for it on the other side. There isn't always a moral, or an "ah-hah!" moment, but more often it's a quiet reminder that God will always be exactly what he promised he would be and do exactly what he promised he would do. Somehow, my drive began and ended with the same worship song in my head. But somehow it seemed bigger the second time.