trip gone bad

We got home early this morning from a pretty disappointing trip to California. We were supposed to stay Friday and Saturday evening in the mountains of northern CA where Jeremy's parents live. Jeremy's sisters and their kids were there, it was supposed to be a fun visit, a rare visit, where the whole family was together at the same time.

We left here after Alex came home from school yesterday afternoon. The drive down was rather uneventful (other than a diaper change involving soiled jeans and the need for a sign on the women's room door warning others that there was a male inside assisting with a disabled child). The boys were happy, and the weather was nice. We arrived sometime after 7pm, and from the start Alex just did not do well at all. Rather than getting to visit that evening, we went to the cabin where we'd be staying...and Alex still did not settle. Finally, after giving him his medicine (with the sedating Trazodone) and a foot rub with lavender baby lotion, he calmed down and went to sleep. We did get to visit for about an hour with Jeremy's sisters and mom before we all were tired and needed some sleep.

Around 1:30am Alex woke and could not be calmed. He yelled and screamed and stomped and hit the doors and walls. At around 3am, after Alex waking Ben several times, we decided we had two choices: leave now and just get home, or wait out the night, say goodbye to everyone in the morning and then risk being too tired to make the drive safely home. Since Alex was extremely agitated, we decided to pack up and go right then.

Driving three hours down a curvy mountain and then back up another one is not fun that early in the morning! We made it safely though, and arrived home around 7:15am. Since I drove, Jeremy let me have the first nap...and now Jeremy and Alex are sleeping. Alex didn't fall asleep until around 11am.

Jeremy and I are so disappointed that we didn't get time to visit. The six hour drive was just not worth the time spent. We are missing visiting and the BBQ that was planned for today. If only we'd just left this morning, at least we would have gotten to visit more. We were so optimistic about this trip since he did so well in Sacramento once he was released from the hospital and VEEG. We stayed there two nights (three? can't remember now) and he did fine. So disappointing this trip didn't work out (have I mentioned that yet??).

It's hard to not be frustrated at Alex. If only he would behave. If only he wouldn't act this way. If only he could be reasoned with. If only he would have calmed down and just gone to sleep (or better yet, stayed asleep!). If only, if only....

So it was nice to run across this poem today...it was just what I needed to read. To put things into perspective for me. It's not his fault. He can't help it, and he's just doing the best he can with the hand he's been dealt.

HEAR WHAT I AM DOING

Please, mom, hear what I am doing; see what I am saying.
The world is a crazy, confusing, scary place for me.
I can’t do the things other kids do—my body doesn’t work right.
But inside, I’m just like other kids—I need to be loved and appreciated;
I need to belong, to fit in; I need to contribute, to be useful; I need to be heard and understood; I desperately want you to be proud of me.

I want to tell you my needs, my feelings, my thoughts, but they get trapped inside me because I can’t get my mouth to say the words. There gets so much piled up inside me that sometimes it just blows up everywhere. And I know you’re disappointed in me, and you get angry at me, and somehow, it’s all my fault.

My actions speak so loudly, you can’t see what I am saying. Yet, my actions are my saying. My body says what my mouth can’t. I act out my feelings, but often, the acting out is such a problem that my feelings go unnoticed. But I have no other way of telling you my feelings.

I want to cooperate, to succeed, to contribute, to feel good about myself, but to do that I must be heard.

Please, mom, hear what I am doing; see what I am saying.

Carolyn Hunsinger