Thursday, May 28, 2009


Scene: Interior of 2003 Pontiac Grand Am at rush hour. Mama C is driving, Reaghan and Nixon are buckled in the back.

R - "Mama...why are we going this way?"
C - "Because this is the way home."
R - "Why?"
C - " just is. This is where they built the road."
R - "Daddy goes another way. Why?"
C - "I don't know...I just like to take this way and he likes to take that way."
R - "Why?"
C - (sigh) "I'm not sure, Reaghan. There are lots of ways home."
R - "Why are there lots of ways?"
C - "Because they built alot of roads."
R - "Why?"
C - "They just did...can we stop with the questions?"
R - "Why?"
C - "Because mama is tired of the questions right now."
R - "Why is mama tired of the questions?"
C - (sigh)

Saturday, May 09, 2009


Several times in the past year the subject of Medication for Nixon has come up. The specialists at the University of Michigan Multidisciplinary Clinic (MDC) suggested it when he tuned three. The neuropsychologist said although he personally favors behavioral psychology treatment to meds, that Ritalin would indeed help him. For a year we struggled with the decision - it is not an easy one to make. On one hand, you know that his quality of life and thus your family's would improve. His pediatrician had high hopes that on meds he will make better progress in speech and occupational therapy, as he would be able to focus and be more a part of the process. On the other hand, there have been no long term studies on the effects of Ritalin on children under the age of six. The side effects include nausea, headaches, and reducing growth progression. There is also a certain stigma attached with medicating your child. Plenty of people out there who are not immersed in the day to day struggle of a special needs child will tell you readily that giving psychotropic drugs to children is just plain wrong. That in doing so you as a parent have given up on your child. That you are lazy and just don't want to chase after an active young boy.

Honestly, I wish it were that easy. If our biggest problem was just keeping up with an active child I think our family would function entirely differently. But as it is, his disability is far more severe than just hyperactivity. His brain is unable to focus on anything for more than a second.
Imagine watching television when someone is changing the channel every ten you think you would be able to learn anything about the characters in the shows? Would you learn anything on Discovery channel if you caught about two minutes of an hour long special? Imagine your frustration. After an hour of this wouldn't you want to tell the person with the remote to go to hell? After a few days of this would you want to punch them in the face? Would you want to scream at them and throw things at them? After a month would you lock yourself away and rock back and forth trying desperately to settle your spinning mind. Picture Clockwork Orange...would you go mad?
That is closest example I can come up with, but I'm sure it isn't even close.

In the past two months we have been seeing regression in Nixon. His speech is actually declining and his outbursts are getting more severe in nature. He also has started bolting again. We live one house away from a very busy street. Four lanes of 45 MPH traffic (and most people do closer to 55). The weekend before last Nixon took off toward Lilley, not even looking where he was going. He was laughing over his shoulder as Bill frantically took off from the garage screaming his name. Bill managed to catch him, barely. He was about two strides from the curb and still going full tilt. Bill grabbed him so quickly that he hurt his arm and Nixon immediately went into a tirade of screams and hitting, but we didn't care. I was desperately choking back tears standing shock still in the driveway. Bill is much faster than me...I would never had made it to him in time. Let that settle in for a moment.
That same weekend he lost it on Reaghan and pulled out a chunk of hair the size of a quarter. Watching her tears and his absolute lack of empathy was terrible for me - she is his twin and they are everything to each other, but he couldn't even grasp what he had done.

So...after that weekend we started talking about meds again. It was apparent that this was now a safety issue, along with a quality of life issue. It was time to talk to his pediatrician.

I took him in last Monday to see Dr. R. She was immediately sympathetic, patting my shoulder as I struggled not to cry as I related the terror of the Lilley incident. She agreed that the time had come, and was honest enough to say that we came farther than alot of parents in our situation. She was frank about the side effects, but also explained that the headaches and nausea generally subside after a week or two. The growth potential can be realised with doing a three months on one month off schedule with his medication, thereby giving his body time to catch up. She also explained that this may not be a forever thing. We are very proactive in dealing with his issues, and once his cognitive ability caught up with his age he very well may be able to control himself on his own. Time will tell.

Off I went to the pharmacy, feeling a bit better after talking to his pediatrician but still afraid of what we were doing. What if he had side effects? Strangely, I was a little afraid that it might not even work since this was our "last resort". The last ditch effort to keep our child safe.

He started Tuesday morning. I was so nervous that I called his learning center half way through the day. "He's fine." his teacher said. "He's having a good day."

When I picked him up I was watching him like a hawk. Over analyzing his every move. He was so calm and happy! When we got home I was amazed at how much he was talking to me, answering questions without me having to make physical contact (our previous way of communicating with him). He was so relaxed and easygoing. I was scared to death that I was reading more into it, but I had tears stinging my eyes several times when he would make eye contact with me to converse.

That night he sat next to me on the couch quietly picking out books to order from the Scholastic catalog. (!!)

We are on day five, and the turn around has been pretty amazing. I still find myself tensing up in situations that normally would put him over the edge, but he handles them on his own. I'm not saying that he doesn't throw the occasional tantrum...he is four, but the violent outbursts are for the most part gone.

I now am dealing with a little guilt. Did we damage him by waiting too long? Would he have caught up more if we had started a year ago when we were advised to by the child psychologist at U of M? How much have we missed? Would he be talking normally now?

There are no answers to these questions, and there never will be. I can only hope that now he will get his feet on the path and stay on it, instead of running circles in the fields.

And by the way...he doesn't seem to have the side effects.