A Conversation with Hope and Liam

The other day, I was driving in the van with Hope and a friend of hers, Liam, who had come over for a playdate. Anna was at another friend's house for a playdate. Hope, her friend, and I were on our way to go pick up Josh at his summer day camp.

Liam had never met Josh so I realized that I should probably interpret a bit about who Josh was so that he wouldn't be surprised, confused or scared upon meeting him. Here is how our conversation went:

Me: Liam, do you know what it means to have special needs?
Liam: No
Me: It means that some people's bodies or brains don't work the way that most people's do. Have you ever seen people like that?
Liam: Yeah. Some of the kids at my school are like that. They don't talk.
Me: Yes! I just wanted to let you know that Hope's brother is like that. His brain doesnt work as well as yours does. For example, he doesnt know how to speak very well yet. Josh is a little different from other kids his age. I just wanted to tell you that, okay Liam?

Liam: Ok.

(After a few minutes . . .)

Liam: Hope, does your brother annoy you?
Hope: No. My sister does but my brother never does.
Liam: Why not?
Hope: Because I love him the most. First is God, then Jesus, then my brother. Do you know about God?
Liam: Yes, I go to the Unitarian Universalist church where we have helping hands and healthy hearts. I go to the yellow room.
Hope: Well, I am in the big kids church now but my sister with the little kids. Want some gum?
Liam: I love gum. Sometimes I eat a whole bunch of it and I think about when I am going to poop it out.

Treasures within the conversations of kids are so easy to miss because they fly by so quickly and there is always so much going on. I just had to capture this one.

My Daughter Called Me a Sinner Today

Nothing makes my five year old daughter, Hope, more angry than when Mommy yells at her brother Josh. Today, when I did not get Joshua's beloved frozen mangos for him fast enough (uh, because I was dealing with an OVERFLOWING TOILET!) Josh took a bowl full of bread crusts and crumbs from breakfast and threw it all over our living room rug.

"No Josh!" I yelled, loudly, . . . and then I took the Lord's name in vain. Yep. Completely lost it. I know he's got an intellectual disability and everything but, he did it on purpose and he did it to make me mad. He was successful. I went in full on "Oh no you don't" mode. I put the plunger away then I grabbed his hand and made him pick up every bread crust and crumb on that rug. Then I made him take a time out in his room where continued to scream his head off.

All the while, Hope was seething. I had told her that I could not deal with her until I was done with her brother. In fact, I think I actually had said, "Put yourself on hold, Hope. I'm dealing with your brother right now!" To my surprise, she did. Finally, after I got Josh into his room, I took her into her room to give her some focused attention. I took her in my lap, held her tight and then I told her that I could see that she was mad but that I was proud of her for having self control and not losing it as well.

Then she looked at me and said, "Mommy, you're a sinner."

Can you believe that? I mean, yes, I am and I totally was being a sinner but I didn't even know she knew that word. We don't do a lot of talking about being "sinners" with them, even though I do believe in the theological concept. We are more likely to talk about "needing God's help"or "not being able to be good on our own" etc. It was like a slap in the face (albeit from a small, five year old hand) to be called a "sinner".

Hope went on to tell me that she loved Josh most in the world (after Jesus and God) and that I was hurting someone who she loved very much. "I hate it when you hurt Joshie, Mommy. You were being mean! You should clean that stuff up yourself!"

Oh man. Just kill me, why don't ya? She's worse than my own conscience.

I regrouped and said, "Hope, you're right. I shouldn't have yelled at Josh like that. That was wrong and it probably scared everyone. Will you forgive me?" She nodded her head without looking at me.

I continued, "But Hope, Josh also needs to learn that doing things like that is not ok."

"Why, Mommy?"

"Well, Hope, I don't let you and your sister throw food on the carpet. Josh needs to learn that too. He needs to learn the rules too."

Hope thought about that for a minute.

Her reply, "Well, why can't those people who come to work with him from school do that for him?"

"Sweetie, he needs to learn to be independent. He can't have aides or his Mommy do everything for him. Everyone needs to know that there are some things that you can do and that you can't do. It's part of growing up, even for him."

That seemed to make enough sense for her. She scampered off my lap to play with her sister. I sat in that rocking chair for a few more minutes, reflecting on what I had just said to her. Oh, man. How am I going to teach my son what is ok and not ok to do? Lately, he's been venturing into new realms of sneaky or inappropriate behavior, like hoarding food in his room or unrolling and eating toilet paper. How do I teach Joshua to have appropriate behavior and that there are consequences for his inappropriate actions?

One thing I do know is that yelling is not the way. Just as with typically developing children, when I yell, all Josh can do is get upset and react to the fact that I am mad at him. I don't often lose it with Josh but when I do, he always responds by lots of crying and hitting himself. My adrenaline is surging and so is everyone else's. This is not a good formula for teaching life lessons.

The problem is that Hope is so right. I am a sinner. I may have better social skills or cognitive abilities but, ultimately, I am no more able to control my impulses on my own than Joshua is. Today I am very aware of my need for God's help and my inability to be good on my own.

Happy

Joshua woke up this morning with a vision. He wanted to go out and sit in the car in the driveway. Nothing I could do would deter him from his goal; no video, no food, not the offer of snuggling. He wanted to go sit in the car. I even told him that I couldn't put music on in the car because that's been draining my car battery. No matter. The kid just wanted to sit in the car. He even eventually gave up on trying to drag me out there by pulling me by my hand and said, "I want to go to the car." Fine. I try to give him what he wants when he uses his words.

Now I am sitting in my front yard in my pajamas with an amazingly great, dark cup of coffee and my laptop. Joshua is experimenting with loud noises and gurgling sounds of different pitches. He is very, very happy. The loud noises and gurgling sounds are punctutated with bursts of uproarious laughter.

When Josh is happy, he is exceedingly happy. He is not trying to be happy. He is not putting on any act of being happy. He is not being happy in order to have any effect on anyone else. Sometimes, I think I experience being happy because I think I should or because I feel the need to be happy to balance out being sad. It's not that complicated for my son. He just is happy. I rarely know why. When something amuses or tickles him, he's just in it. And it comes out of him loudly. It feels simple and pure to me.

Here are a few pictures of Josh being happy. We often sit alone in the baby cry room during the Sunday service at church. I let him listen to music on my phone while I try to listen to the sermon on the video feed. At this particular moment, listening to the Black Eyed Peas is making Josh very happy.

My Kid is Such a Weirdo! (I can say this because I'm his Mom)

(Warning, this post is a little bit gross. Yes, again.)

OK. I know that life with this kid is going to be . . . different. I get it -- he's on a different journey, different wavelength, different perspective etc. But you know what? Sometimes I just get a wave of feeling like, "My kid is so weird!"

For example, Josh likes to nibble on books, just the corners. When he's bored sitting on the toilet, he's been known to chew on a big wad of toilet paper. Strange, right? Recently, he's been throwing up, randomly. I know, in my mother's heart, that he isn't sick. He just throws up and seems fine afterward. He's also quite constipated.

Tonight, he and his dad were coming home early from a family picnic at our local park. He clearly has to go to the bathroom so they go straight to the bathroom. As they walk in, before Alex can do anything, Josh puts his hands down the back of his pants and pulls out (among other stuff) a long piece of videotape. I am not kidding you. It's a miracle that this boy is not dead. I mean, is the body really able to deal with stuff like this?

When I get home, Alex tells me this story and I'm just floored.

Seriously? My kid eats (and poops) video tape. Thomas the tank engine, specifically. I know because Alex recently found a destroyed VHS tape cassette thing and threw it away. Stranger still, Josh has been obsessed with asking to watch the Thomas video. It's taking everything in me to not say to him, "No, buddy, you can't watch Thomas BECAUSE YOU ATE IT!"

OK. Take deep breath, Susan. Life is strange and gross and unbelievable sometimes. Life with Josh is especially so.

Evening Prayers

Right now my wonderful husband is reading to the girls and saying prayers with them. The girls clamor to get to go first, lifting up the very real concerns of their life. "Dear God, I pray for the boo boo on my leg and the line on my butt I got today when I was in the sun without sunscreen . . . " They pray for friends, for our upcoming car trip and for their stuffed animals. Then Alex prays for Joshua, that he would someday be completely healed.

It's a bittersweet thing to hear that. He's modeling for his little girls a belief in and a hope for miracles. I don't do that. I pray that Josh would use his words more and that he would complete his potty training. When I am alone, I pray for other things that I am desperate for, like that he would stop playing with himself in public places. But I don't pray for a complete healing. I just don't have the faith to even ask for that. But I am touched when other people do.

Hope and Anna are growing up with so many things being "normal". Praying for very real, up close miracles. Watching TV, oblivious while their older brother screams his head off under a big blanket right next to them. To them, their brother is their brother. The only brother that they have ever known. It's so amazing to me how much of their reality is shaped by what goes on in this house, in this household. I hope, with all my heart, that the imperfect love and the mustard seed of faith that we have and that we model to them is enough to give them a good start on a good life.

Joshua Learning How to Use His Words

What’s that called

when you have no idea

that the person you are talking to

doesn’t know what’s in your head?

Joshua’s ever recurring statement

with no subject,

“I want it”

like everything with this kid

happens over and over again.

“I want it”

“I want it”

“I want some”

Repetition, perseveration

echolalia.

His response to, “Hi Joshua”

is “Hi Joshua”.

But today comes a surprise connection,

like the sun coming out in a constantly cloudy place.

At the end of an eternal effort

my beautiful son

decides to tell me what he wants

using his words.

“I want Barney video.”

I run to turn it on for him.

More about Anna and her Brother

"Is Joshua always going to be special-needs?" Anna asked her question while looking out the window of the back seat of my van.

I wonder what is going on in that four year old brain of hers. How is she processing the life that she has been given to live and the family that God put her in.

"I think probably so, Anna. Why do you ask?"

"Well, is he going to get married?" (Anna has been thinking a lot about marriage and weddings. I began to be concerned about her thinking about such "big girl" stuff until she told me that she has decided that she is going to marry her Daddy.)

"I don't think that Joshua is going to get married, honey."

"Well, who will he live with when he grows up?"

"Probably Daddy and me," I replied.

"Aren't you and Daddy going to be really, really old by the time Joshua grows up?"

I can't remember how I replied but I was so struck by how such deep concerns bubble up in her developing little brain. She's so young. She still draws in stick figures. She's just now mastered recognizing the letters of the alphabet. She spends most of her time in the present, which is filled with immediate impulses and gratification.

Yet, somewhere in there, Anna wonders about her brother and his future.

Everyday there are reminders to me that Anna and her older sister, Hope are being shaped, from the very ground up, by the presence of this different little boy. I was looking through recent pictures this week and noticed that in this one (above), Anna is helping her brother to look at the camera.

Earlier this week we were at Hope's school picking up Hope and another boy who I was giving a ride home. Josh was in the back of the van screaming his head off for no apparent reason. The boy (a very polite and nice kid) had his fingers in his ears and did not look like he was looking forward to sitting in the back with Josh. The girls were already strapped into their booster seats in the middle row. While I put the other boy's backpack into the very back of the van, I saw Anna unstrap herself, pick up her booster, and settle herself into the back seat with Josh. The boy that I was giving a ride to seemed mighty relieved. Later, I asked Anna about why she had done it, whether it was out of concern for the other boy or for Josh. Anna said, "Because I love Joshie, Mommy. He's very special to me."

Oh man. Such sweetness. . . but do I start saving now for therapy for this sweet little girl who feels responsible for her brother at age 4?