"Look At Me"

"Look At Me"
monotype and screenprint

Monday, July 22, 2013

"Mama Called the Doctor"

On Friday night/Saturday morning (not sure which), I woke up to the sound of Derek moaning in his sleep and saying, "Hurt, hurt."  I asked him what hurt, but he went back to sleep.  He woke up several more times that night crying.  Not good, because we were at the lake--three hours from our regular doctor.

When he really did wake up Saturday morning, he woke up screaming.  He held his right ear and yelled, "OWIE!!!"  Uh oh.

On the one hand, high-five for communication, buddy.
On the other hand, terrible timing.

I scrambled to find a walk-in clinic that was open on a Saturday morning.

I told Derek that we were going to the doctor and that they were going to fix his ear.

I was not prepared for the way Derek handled the appointment.

While we were waiting for the doctor to come into the examination room, we read a book about Winnie the Pooh visiting the doctor.  Derek compared the stethoscope and other medical instruments with the ones in the book.  He'd match them and smile.

When the doctor came into the room, Derek scrambled onto the table and said matter-of-factly, "Hurt.  Owie." Then he pointed to his ear.

 I had to struggle not to laugh when he sung under his breath, "Mama called doctor and doctor said, no more monkeys jumping on bed."

Then the doctor looked at his ears.  He cried a little when she looked at the ear that was bothering him, but as soon as she was done, Derek lifted his hand for a high-five and said, "Yay! We did it!!!"

The doctor gave him an orange balloon for being so good...and he tried to put it in his infected ear.  I think he thought it would help fix it faster?  I explained that we had to go pick up medicine.

I have no idea what the doctor thought of my child (it was a very small clinic in a very small town), but I thought he was adorable and I couldn't have been more proud.

Usually doctor appointments are challenges.  Derek tends to be uncooperative.  He fights the doctor, cries, flops around on the floor, etc.  This time was different.  I'm not sure why.  Maybe Derek was in a lot of pain and he knew the doctor would help him?

What I do know, is that my baby is getting better and better at communicating his needs and telling people what is wrong.  For that, I am thankful.

Sad he can't swim.

Wednesday, July 10, 2013

The Words That Matter

I was talking to a fellow mommy blogger yesterday.  She has a 2 year old son named Mason who reminds me a lot of Derek at that age.  He only says about 6 words, and the 6 words he says aren't pronounced correctly.  You can find her at My Yellow Brick Road.  I remember those early years.  They were hard.  No, I'm lying.  They were more than hard.  They were exhausting and terrifying and frustrating.  Derek couldn't communicate his needs and had no desire to interact with anyone.  Tyler was jealous and angry.  I lived in a perpetual state of fear that things would never get any easier.

Thinking about those early years and everything my family went through no longer causes me pain.  The multiple evaluations.  The sedated ABR.  The MRI and EEG that came back inconclusive (I could kick myself for not getting a second opinion, but there is nothing I can do about that now...)  Starting ABA, which helped my son tremendously.  Not only did he love his therapists, but he learned that words had meaning, started PECS, learned some sign language, and finally found his voice. Maybe I had to go through all of that to truly appreciate what I have now.

There are still things that Derek cannot say.  Technically, he is still considered non-verbal.  If he wandered away from home and the police asked him his name, he might answer his first name, but he cannot give you his last name.  Sometimes he says his name is "Mommy."  He can usually tell you he is 5 years old.  But if you ask where he lives?  Sometimes he says "Sackle."  (Axtell.)  Sometimes he says he lives in "Five." (He knows he's supposed to answer something, so he gives a response.  He doesn't pay attention to the actual question.)  He can't give you a specific address or phone number.

Some days, Derek doesn't say much of anything.  Other days, he babbles nonsense all day long.  Sometimes, he sings the same song for hours on end.

Derek can count to 5, but after that he's inconsistent.  I've heard him count to ten before, but if you ask him to do it on demand, sometimes he counts backwards and sometimes he skips numbers.

Much of his speech is echolalia or scripting.

He can recite songs from memory and say entire scenes from movies verbatim.  But when he's sick, he can't tell me what's wrong.

Time doesn't make much sense to him.  He likes watching Christmas movies in the summer and doesn't understand the concept of "weekdays" vs. "weekends."  All he knows is that certain days he has school and certain days he doesn't.

But somehow, none of that matters.

I woke up this morning to Derek saying,"So good to see you, Mommy.  Wuv you."

The words Derek can say are far more important than the ones he can't.  And the things he does, like hugging me and kissing me without being told to?  Those are the things that matter.  Non-verbal?  Whatever.  Derek speaks with his heart.
I told Derek to say cheese and he kissed my cheek instead.