Wednesday, June 15, 2016


We were blessed with a gorgeous evening! Asher and I went for a walk down some pathways through our neighborhood. The air was warm and clear and all the humidity of the last few days was blown away with the thunderstorms. There were huge patches of blue sky, covered by an occasional large fluffy cloud. We walked down a path I hadn't been on since fall and was awed at the number of wildflowers nodding at us in the clean evening light. I was contemplating how every single flower is a visible reminder of God's love for us, something I had spoken about at an event just a few weeks ago, and now here was a whole meadow that felt like it had been placed there just for me, just for tonight.

And then they passed.

A mom. Three boys.

Three boys roughly the same age as my three. All riding bikes, the mom bringing up the rear. They seemed so free, so at ease. The mom was completely relaxed. She knew her boys knew what to do and where to go. She had no fear that one of them might careen off in the wrong direction, most likely toward the busy street ahead.

And it hit me hard, as it does occasionally:

What is that like?

What is it like to be just a regular mom?

With regular kids?

With nothing that makes you stand out in a crowd?

What is it like to spontaneously go for a bike ride with all three of your children?

What is it like not to have to plan so much ahead that it never feels like a spontaneous decision?

What is it like not to have to hook up adaptive equipment?

To just let the kids hop on and ride?

What is it like to allow freedom to all of your children without concern for anyone's safety?

What is it like for all of your children to be able to use the restroom with little to no assistance from you?

What is it like not to have to do hand-over-hand cleaning of the bathroom floor for the bazillionth time that day because your child thinks it's fun to spray his pee everywhere? (Of course, she's the mom of boys so she may actually be doing that but not in my dream speculation.)

What is it like not to have your day rigidly scheduled with medical procedures, therapy exercises, and personal care activities?

What's it like not to deal with behaviors? Panic attacks? Spitting? Hitting? Kicking?

What is it like to be 'normal'?

I walked under my own personal storm cloud as I pondered that for most of the way home. Wouldn't it be nice, just once, to have that? But of course, I would still want my kids. I wouldn't want three other kids. I want MY boys, but without the struggles. But would they still be my boys? Would I even recognize them? How can you have the same of something if the things that make that something what it is disappear?

I can't. I can't have my boys, my family, without the things that make my boys what they are. All the difficulty, the trials, the slog are making a beautiful something that wouldn't exist without the tough. I don't even really know completely what that beautiful something is but I see it happening. I see it transforming us into better, more caring, more loving, more giving, more open people.

Thursday, June 9, 2016

Snapping Turtles And Predators

This morning as I went for a run something about the humidity in the air or the water along my route or the way the birds were singing reminded me of childhood times spending summer breaks at my grandparent's house which sat at the end of a canal off the Missouri River. I would spend whole days rowing my grandma's rowboat back and forth, jumping out of the boat when I got too hot, seeing how far down I could swim, never quite touching the bottom. My hair would bleach bright blond and my skin would turn golden brown in the sun. I would come into the house only to eat and then I would be back out again in the water. Whenever my grandpa caught sight of me he would warn me of all the dangers in the water.

'Watch out for snapping turtles! They're so big they can bite your big toe off!'

'Don't get too close to the river! The current will sweep you right out and we'll never see you again!'

'There are some big fish in there. Some of 'em have teeth and they'll think your fingers are worms!'

I would look appropriately serious at his warnings and then go jump back in the water.

One day my mom called me in. She and my grandma were headed to town for some grocery shopping and she wanted me to come with them. I dutifully put on some clothes over my swimsuit and followed them to the car. We collected the things they thought we'd need for a good dinner and, while they waited in the checkout line, I wandered around the front of the store, looking at the gumball machines, coin operated horse ride, bulletin board right next to the large front doors.

All of a sudden I was aware that a man was whispering in my ear. I whipped my head around, eyes huge, body tense. I knew I was in danger. It took a minute for my brain to realize what was happening. The man was dirty, greasy, disheveled. He reminded me of the homeless men our church would sometimes serve in downtown Denver. He was gone before it registered what he had said to me and what had happened.

'If you ever need a friend, call me,' the man said. I looked in my hand where a tiny scrap of paper sat with something scrawled on it. He had shoved it in my hand before he took off.

I was terrified. I made a bee-line to my mom. I let the paper fall to the floor as I ran. I spent the drive back to the house lying on the backseat, fearful that the man was following us and would find out where I was. I stayed awake late into the night, hearing every sound, positive that it was the man coming in through one of the open windows. But, and this is the saddest thing to me now as a mom myself, it never once crossed my mind that I should tell my mom what just happened. I don't even know why. Why wouldn't I have let her know? Why wouldn't I have asked to call the police? Why wouldn't I have shown someone that piece of paper?!

Because I was a little girl who had never had any conversations about what to do in that situation. My parents, my grandparents weren't bad. They just hoped that we lived in a world where I would need to know about snapping turtles but not about predators. They wanted to believe that their children and grandchildren would not be the ones targeted, would not cross paths with dangerous people who wanted to harm them.

There is something innate in children that causes them to clamp up when they should talk and the key to unlock that is adults who communicate in a way that doesn't cause more anxiety but informs. But we have to believe that our children will most likely meet people who are out to cause them harm, people they know, people they don't know. My story happened 30 years ago. I need to see that the world is not a safer place than it was then. It is horrible that these conversations are needed but they are.

I thought of the video of the mom in Florida whose daughter was grabbed and dragged toward the door by a would-be abductor. Thank God that woman was aware enough to jump into the fray immediately and save her daughter! If the man in my story had decided to be so bold, I would have been long gone before anyone realized what had happened. I was right next to the door. My mom was far away.

Give your children love today. And talk to them. Talk to them about what to do when they feel afraid. And be a safe place for them to run to when they are afraid. Teach them that when they feel nervous or scared of an adult it is okay and to respect those feelings. Most of all, don't be afraid to talk about every little thing they want to talk about.

We're going to get through this parenting thing and our kids are going to grow up to be amazing adults.

Wednesday, June 1, 2016

The Right Motivation

Asher is capable of doing a lot of things . . . if he feels like it. He loves to show his new skills as he develops, he feel so proud of himself. The smile is priceless.

The adventure begins after he has shown himself to be proficient at something and decides he's bored with it and doesn't want to do it anymore.

It happened with eating with utensils. 'Yeah, I know this Mom. I'm not interested anymore. You do it for me.'

It happened with picking up . . . anything. 'Yeah, your songs aren't doing it for me anymore. I'll sit over here and read a book while you pick up the gazillion cars I just dumped out everywhere.'

And now, it's happening with toilet training.

Two months, TWO, he had been completely dry. Night and day. He would go nearly every time we sat him on the toilet. It had been amazing and beautiful and so cost effective. Then, all of a sudden, we would set him on the potty and he would sign 'all done' about 2.9 seconds later. We would sit and we would wait. We would sing the potty song, we would cheer for the pee pee to come out, all things that used to work to get him to actually do the business we are there for. But, nothing.

We needed new motivation.

So, we started standing up to go, something new! That worked for about two weeks.

We started getting him excited about what he would do after he went to the bathroom, 'Do you want to watch a video?', 'Would you like a cookie?', 'How about going to the park?', 'Do you want to swing?' . . . 'Let's go potty first and then we will!' That worked for about three weeks.

There are days where we have to make-do with the bath treatment. It's impossible to continue holding it in when you are sitting in warm water, right? Yet, somehow he still does!

What is truly impressive is his determination and strength of will!

Does it frustrate me sometimes, that he is so set to do what he wants to do?

Oh yes!

But it is also a lesson to me. Kids' opinions in general often get overlooked. But I have noticed that children with mental disabilities are stereotyped into a category of 'easy' meaning they just go along with what you want them to do and don't express their own wishes. They are happy to do what others tell them to. They don't have the mental capacity to have thoughts of their own.

This is such a simplistic view! I am happy to say it is false. And I am happy to recognize the individuality of my own son. He is not a robot or a drone, he is himself. He has thoughts, opinions and preferences. He is a beautifully made human with all the uniqueness that comes with that territory. Please remember that the next time you see someone you think is just being difficult. Perhaps they are communicating and learning to control their own little corner of the world in the best way they know how.