Monday, September 5, 2011

My Heart's Labor Day

Today, September 5, 2011 is a day that will be etched in my heart forever.

MM has developed a new fixation/obsession of collecting business cards & pamphlets from wherever we go. She reads the pamphlets, memorizing every detail of them. She then parrots the facts out to you & quizzes you several times throughout the day.

She got the pamphlet from her therapy place last Thursday. She has been reading it over & over, but oddly not one inquiry has come from her about that flyer. Not one until this evening.

It started when she was in the shower. She starts saying "I do not have artism" (artism is how she says autism). She often says this whenever she happens to sneak a peak at a report or hears me in a discussion. Again, "I do not have artism, I go to **certain therapy center**". I say, "Yes, you do go to **certain therapy center** and you do have autism". Then the conversation goes from her usual scripts/quizzes or even an argument of not having artism to this:

MM: What is artism?
Me: It is a brain disorder that affects how you see the world, how you feel & sense the world, how you interact & how you socialize and talk with people.
MM: Was I born with artism?
Me: :::long pause cause I still am not totally sure how to navigate this:::: Yes you were
MM: It is a brain disorder that I was born with
Me: Yes
MM: Do you have artism?
Me: No
MM: Does Daddy have artism?
Me: No.

She then jumps to another topic.

MM: Do I have cerebral palsy?
Me: Yes
MM: What is cerebral palsy?
Me: It is a condition that affects your muscles caused by lack of oxygen to your brain either when you were born or when you were in mommy's tummy
MM: You were pregnant and gave birth to me
Me: Yes
MM: Why didn't my brain get enough oxygen?
Me: They don't know for sure. Mommy was very sick & you were born early.
MM: My brain has enough oxygen now. I got cerebral palsy cause you took Zoloft (thanks lawyer commercials)
Me: LOL, no I didn't take Zoloft and yes, your brain has enough oxygen now. You know your friend H? She has cerebral palsy too. She didn't get enough oxygen cause when she was in her mommy's tummy her mommy had a bad car accident. You have mild cerebral palsy, she has severe cerebral palsy.
MM: Mine is mild, H is severe.
Me: Yes. That is why you were DAFOs & why you go to therapy. You have all these wonderful people to help you get strong & do all the things you can do. But your cerebral palsy is what makes it hard for you to write, snap & unsnap, zip, put on clothes, walk long distances.
MM: I can run fast.
Me: Yes, honey you can, the fastest. You can do anything you want to do, just sometimes you need a little more help.

MM: You have asthma.
Me: Yes.
MM: Were you born with asthma?
Me: Yes.
MM: Will I always have artism & cerebral palsy?
Me: :::swallowing lump & keeping the tears from creeping up:::: Yes.

By this time, we are done getting her dressed. She jumps up off the bed and starts in her typical language stimming voice "I have artism & cerebral palsy. It is mild. I have mild cerebral palsy. My brain didn't get oxygen" and then she continues to repeat it for the next 10 minutes until Wheel of Fortune comes on.

God bless her. She some how had a real conversation about it. I don't know if she fully understands it, but I think she does. I was totally caught off guard & not ready. I tried to be matter of fact and honest. I somehow got through it & didn't cry. Till now. That break in my heart just tore right back open, just as fresh as the days I found out about each of her diagnoses.

It just feels wrong having to explain brain injury & brain disorder to your eight year old, especially when it's hers.

1 comment:

Colleen said...

This is something I have yet had to discuss. I honestly have not really even thought about talking to Zach about his autism or Kennedy about her disabilities. Thanks for sharing with us your conversation.

Even though it caught you off guard it sounds like you did a great job explaining it to her. I love seeing how even though our kids may stim on some sayings/words, it is nice seeing such a great conversation happening too, especially something that we are not expecting. I know we had Zach ask if we were jealous this weekend. I dont really use this word much, and didn't realize he even knew it. It was kind of nice hearing something new, yet sad at the same time cause I am wondering if he is feeling this and is just now getting the words to express it.