Clouds, May 2010

Clouds, May 2010

Wednesday, April 25, 2012

optimism, is that you?

It is so nice to see you again.

Sunday, April 22, 2012
I leave H's kindergarten homework on the kitchen table. Beside it, a pencil. If I dare ask him to sit and "sign" his name (sign, scribble-- same thing) I will get some sort of non-compliant answer. We used to complete homework during dinner and I would read the questions aloud and write his answers, and he would try and write his name. I always put the H where it belongs as a visual prompt for him to put his "signature" next to it.
He has been working really hard on getting that "H", and on Sunday it finally dawned on me that maybe I should put the "-ayden" instead. This way he could just fill in the blank.
So, I did just that and I left the homework on the table.
When I returned, the homework was beside the pencil just where I left it (pictured above). I was so surprised at what my eyes were seeing, that I asked Dan if he helped Hayden. He had just returned from an overnight shift at work and it seemed unlikely that he would have gotten up from that couch, but so did the homework in front of me.
That right there is a mighty fantastic "H" if I say so myself.

Monday, April 23, 2012
First day of the new toileting protocol at school. Per the new plan proposed by the behaviorist, Hayden will be encouraged to drink his water more often, and prompted to sit on the toilet very frequently. I shopped for lots of extra pants, began collecting (hopeful) reward items, and gathered plenty of items from the cleaning supplies aisle. That afternoon one of H's teachers called me with an update. They were very pleased that Hayden willingly sat on the toilet so many times throughout the day.
"How many?" I asked. Three? Five? We were very hopeful.
"Let me count," she replied. "Fifteen. No, sixteen. Sixteen times."
Nothing happened, but actually, plenty happened.

Tuesday, April 24, 2012
It is 11:27AM and my cell phone rings. The screen is flashing the name of Hayden's school, and I get up from my desk to go over to the other side of the office where it's vacant. I hear Miss B prompting Hayden to tell me something... I hear Hayden, "sat on koilet" and I hear him say "me poop". Miss B clarifies and says they went to change him because he was wet, and when he sat on the toilet he went to the bathroom.
She said they celebrated and blew horns and he ate a doughnut hole.
When H got home from school I was beaming with pride, and told him that we would take him out for dinner, and then, he could also choose a prize. "What do you want?" I asked. He stood at the foot of the front steps with his arms outstretched and declared, "a big boat!"
When all was said and done he enjoyed an enormous hot dog at one of his favorite local places, and then we made another stop and he picked out some cars... five to be exact. Four of them were packaged together, so I think we all pretended it was just two.

Tuesday, April 17, 2012

the downside to progress

Among all areas that Hayden exhibits challenges, his speech has probably progressed the most.

Less than two years ago when his language really emerged we knew it was a life-changer. And it has been-- helping us to understand the cause of some of his frustration because now he can use his words, and we are even beginning to have some conversations with him, and discovering all of this information that was tucked inside him that he was absorbing over the years.

However, Hayden has also gone through periodic phases of either saying words that sound inappropriate due to difficulty in pronunciation, or actually saying inappropriate words that do not sound bad... again, due to difficulty in pronunciation.

When he was in his second year of preschool (I believe), he began saying something that sounded like "fuck". So every time it came out of his mouth, we would ask, "frog?" or "truck?"

There was also "gay" and we would have to ask, "day?" Or something that begins with a "g" like "green". Because if we react to the fact that something he says is a bad word, it backfires and seems to motivate him to remember it.

Another one was "freak" and that one left his vocabulary for a long time & unfortunately it has recently re-appeared.

Sometimes I do not know what upsets me more-- the fact that we have so many challenges trying to correct his language, or the fact that the first thing many people ask is, "where did he learn that?"

Such a productive question, really.

Recently another horrible word has emerged. Hayden's speech now has more clarity than ever before-- so when the word "bullshit" escapes his lips, everyone knows exactly what he just said. The other kids on the playground can hear him loud & clear, the teachers in the halls, or the entire student body & faculty outside for a fire drill-- quietly waiting for four full minutes to go back into the building. Hayden might as well have had a megaphone in front of his face.

Tomorrow we have an appointment at the closest FX clinic to revisit medication options. We had been holding out for Hayden to participate in a clinical trial, which we just recently learned he is not eligible for. So it's back to the drawing board to consider off-label options.

I think my husband and I both honestly thought things would be much improved by now. Hayden is going to be seven years old in about two months. SEVEN YEARS OLD. He's OLD. He's a GROWN KID. And he still has trouble using a fork. And getting himself dressed. And following direction, and cleaning up his toys. He has yet to write his own name, or recite the alphabet. And most heart-breaking... he still hasn't mastered the basic task of toileting. One of the main reasons I began this blog in the first place... thought we'd have some progress to track.

But there was always the speech-- I always had that to hold onto. Focusing on just how much it has improved. I don't want to lose that happiness, or that pride in his progress. I think the three of us are long overdue for something to celebrate and be genuinely happy over... one new accomplishment, with no downside.

At this point I'd be happy with success at getting medicine in him.

So I guess we'll see. Have to determine an appropriate treatment medication, first.