Sunday, November 28, 2010

The Dementor Moment

Parenting young children is almost always an exceedingly tiring experience. However, every now and then, a parent will encounter a situation that sucks every little bit of life force from your body and soul instantaneously. My husband and I refer to it as a "dementor moment", named after the magical creatures in the Harry Potter series who drain people of all positive emotions and leave them with only darkness and despair.

I had a dementor moment this very evening. My husband was working all day in his office preparing for an evening meeting. I was in full "get the kids to bed early because I'm already pretty tired" mode. Two thirds of the children had been fed and I had some good momentum with casting vision for a nice bath when my son threw up all over himself and me. Every ounce of energy immediately left me. My chin plunged to my chest in defeat.

When Josh throws up, it means that we have to be super watchful for how he's doing. We triple one of his meds (specifically, the hormone that helps him to fight illness) and, if he can't keep it down, we have to give him a big, fat emergency shot and then immediately take him to the emergency room to get more meds intravenously. We are never allowed to take Josh very far from a hospital with an emergency room. As you can imagine, we have to be pretty vigilant when Josh gets sick.

I left the mess that was my son and ran for the phone to call Alex. "Josh threw up. I need back up. Come home now." Thankfully, my husband's office is only 10 minutes away and he registered the level of need in my voice. He came through the front door in 8 minutes and immediately got to work on moving the girls along their evening routine (while throwing dishes into dishwasher and making the kitchen a little less overwhelmingly chaotic). I put myself and my son back together again, praying as I went. Within 10 minutes, the girls finished their dinner and were headed toward their bath. I sent Alex back out the door to finish prepping for his meeting and I was able to go on with the rest of the evening at home.

Sometimes, all that is needed is some quick back up and the good sense to ask for it. The situation was not really despair-worthy but I just didn't have it for that moment. I have learned that you can either try to slog it out yourself or you can try to ask for help-- from a friend, from my husband, from God, from anyone on Facebook, anyone. It is amazing to me how much just a little bit of support goes toward being able to make it. In my opinion, Special Needs Parenting Rule #1 is "Ask for Help".

Monday, November 22, 2010

Birthday Party Conversations

This past weekend, Joshua's sisters, Hope and Anna went to a close friend's birthday party. Apparently there were 12 little girls ages 4-6. At one point, the girls were sitting around and someone realized that everyone there had a brother! The host of the party suggested that they all go around and share their own name and their brother's name. When it came around to the older, 6 year old girls, there was additional commentary about how annoying their brothers were. Soon, everyone was chiming in declaring that their brothers were also annoying; pushing them around, taking their stuff etc.

But my Anna said, "My brother's name is Josh and he's not annoying. He doesn't know how to be annoying because he has special needs!" The birthday girl's mom, asked a few questions about what "special needs" means and they embarked on a whole group conversation about what it means to have special needs and the different kinds of special needs there are, physical, vision, etc. Anna told me all about this conversation while we were brushing her teeth later that night. I so wish I had been there to soak up the sweetness and beauty of the moment.

Saturday, November 13, 2010

Who is this Stranger in My House?

For the past several weeks, Joshua has woken up in the morning and has walked himself to the bathroom to pull down his pants and take a morning pee. Now, for most typical 8 year olds, this is not a big deal. This is a huge deal for mine.

Although Josh can do much of the bathroom routine by himself, he has never taken responsibility to get himself there at the right time. For his whole life he has seemed utterly happy to just go in his pants if we don't take him. I cannot tell you how many times I have cleaned up the accidents that this child has had.

Because of Joshua's hormone deficiencies, he is usually running out of urine condensing hormone by morning time. This means that it is very difficult for him to control his output, especially at that time. Josh always goes to bed with a nighttime diaper, even though he has worn underwear in the daytime for several years now. I have never imagined that we would make progress in his being potty trained at night and, honestly, it has not been at the top of my list of goals to work on for Josh.

The nighttime diaper is a pretty big deal in the world of caring for Josh. If you don't put it on right or, God forbid, if you don't give him the right dose of evening pills, you can wind up with a bed that is completely soaked. We have thrown many, many, many yucky pillows away.

However, for some reason, lately Josh has decided to not pee in his diaper at night or in the morning in bed. And he has decided to take responsibility for getting himself to the bathroom in the morning. The first time he did this, I seriously thought that there was a stranger in my house. I could tell that the person who walked by my slightly open bedroom door was taller and heavier than my girls. Who could it be? I had no category for Joshua getting himself out of bed in the morning. Immediately, I jumped out of bed to see what was going on to find him calmly pulling his diaper and pajamas back up then washing his hands. "Want toast" he said to me with utter nonchalance.

Even now, weeks into this pattern, I'm shocked and surprised every time this happens in the morning. I take a minute to be thankful and amazed then I run to the kitchen to get a reinforcing chocolate chip and jam it into his happy little mouth saying, "Josh, if you take yourself to the bathroom, you get a . . . " "Choc-lit" is his reply.

I'm not sure when Josh will be fully potty trained; when I don't have to mentally calculate how long it's been since he went to the bathroom and then prompt him to go. He's not totally trustworthy yet. But I would like to take a minute to note that my son is learning to take responsibility for his morning pee and, for that small but significant thing, I rejoice!