Why?

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 - "Well...it 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)

Ritalin

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 seconds...do 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.

Notes on Nixon

Alot of you were wondering about the results of Nixon's Neuropsych testing last week. We had some good news and some bad news:

The Good:
- With all of the therapy that he has been getting in special ed, he tested much better on his social awareness and sensitivities. The Neuropsychologist believes that we are out of the woods on the autism diagnosis (whew...big whew).
- Although his "normal" IQ testing was below normal, they decided to test him with a different test. The test they used was for children who are non-verbal, and the whole test is given without verbal instructions or the need for verbal responces to the test. Nixon scored above average IQ based on the non-verbal testing.

The Bad
- The testing showed that Nixon is functioning at an age of 2 years, 4 months. This puts him delayed by 1.5 years.
- Although we had thought that he was doing so much better verbally, but the doc told us that as he is approaching four the curve is getting steeper. Although he know talks a little bit, his vocab and verbal abilities are still around an 18 month to two year old. That was a big disappointment for me since I had felt that we had made alot of progress.
- Fine motor skills are a major concern. He is unable to correctly hold a crayon, and is unable to make a line. Very big concern.
- The potential diagnosis we are now looking at is combined ADD and ADHD with Developmental Delay and a Speech Delay. I'm still wrestling with if this really is any better than the mild autism diagnosis that they had warned us about a year ago. Even though autism is so serious, mildly autistic sounds so much better to me than all the other ones combined. Maybe its just because it is more words, and maybe its because we are somewhat opposed to medication and that seems to be the route for the ADD/ADHD disorder. Our opinion may change as he gets into his school years, but we have decided not to medicate at this time.

The Ugly: We are waiting on the tests that were sent to special ed and his learning center. Once those are in the Doc will write his report. Once we get the report we need to call another IEP with the school district to change his IEP goals. Doc has strongly suggested outside Speech therapy and Occupational therapy on top of what he is getting through special ed, so we need to start looking for providers. Doc also strongly recommended getting a Child Behavioral Psychologist on board. Once we get all the players we need to schedule a meeting with the school, the psychologist, and the Neuropsychologist to develop a combined school/home plan. This sounds very overwhelming, so I am glad to have the time to wait for the report from neuropsych before I have to get started.
Well...thats the news. If anyone knows a really great speech therapist in the Plymouth Canton area who takes U of M insurance - let me know!!!

Signal Strength is Excellent

The connection between a mother and her child is mystical. As I lay next to my sick daughter listening to the coughs racking her body, I begin to feel as if I can cough for her. I feel my chest tighten, and I cough with a strange sensation that doing so helps her respire. I clear my own throat to the sounds of the rattle in hers. I can't help it...I can't not do it. It has been predetermined in my genetic code to act this way. I am a mother.
At times the connection feels physical. A ghoast umbilicus. A tug in the center of my abdomen; somewhere very deep.
In times past, when Nixon was having breathing difficulties, I would feel my own respirations become shallow. I would wheeze along with him, both of us sitting up at 2:00 am wheezing away like a couple of old accordians.
It is 4:18. Normally I would be rising for work soon, but not today. The alarm has been turned off. My sick daughter lies next to me, the syrup and the Vicks have begun their duty and the time between her coughs extends. Her breaths regulate and she drifts off to sleep.
I lay awake wondering if when she is older if I will still feel the tug. When she calls home from university with a frog in her throat, will I still clear mine? If she coughs from accross the world will I have ghoast coughs? Does the signal strength fade with distance...with time?
I close my eyes. I decide to sleep, knowing that at least for now the signal strength is excellant.

The Dark Side

Before I post about our fabulous Disney Cruise, there has been something weighing on me that I need to get out there to feel better about.
When you have a child with a developmental disability, there are alot of things going on internally with that child that are not apparent on the outside. To the average viewer (person), he appears to be a normal almost four year old. His behavior and cognitive understanding of what is acceptable, unfortunately, is closer to that of a two and a half year old. You can not SEE this difference, but it is there.
As a parent, you have to make the choice to bring that child into situations where you know there will be a problem with their ability to function "normally" in that environment. Even though you know (and have been told by clinicians) that forcing this child into environments outside of their norm is good for them, you also know that doing so will be exhausting both mentally and physically to you as a parent. It also can be frustrating to those around you who may not know or understand all of what is going on "behind the scenes".
We have been in many situations where Nixon is having a hard time. He is very quickly overstimulated, and outside of his comfort zone this will sometimes manifest itself in violent behavior to those around around him as well as himself. He will hit, spit, bang his head, kick, or throw things. He has a very difficult time controlling these outbursts. To the outsider, he looks like a naughty boy and we look like bad parents. To us, he looks like a child in pain internally. He is acting out because he is past his comfort zone.
The dark side of this is when these things happen, and you get the comments and dirty looks from people, your first reaction feels like you need to explain him. Tell the people that he is "special" and all those words. I don't do that. I would prefer they think I am the one with the problem. That Nixon acts like a monster because its a parenting problem. Sometimes I wonder if I do this out of wishful thinking. Disciplinary problems can be solved after all.
The other aspect of this dark side is that sometimes you pass on experiences with your child because you simply do not have it in you to handle it that day. You are simply too tired, or too hurt from the last time.
The cruise was a wonderful, valuable, and educational experience. We learned alot about what his capabilities are when he is totally removed from his comfort zone. We also learned alot of our ability as far as making it easier on him. I think we pushed him too far a few times, and his actions caused me to loose my temper and hurt the feelings of some around me. For this I am regretful. Do I regret the trip? No Way. Will we continue to urge Nixon outside of his comfort zone? Definitely. Will it always be pretty? No, but life never is.

Disney Cruise

Still unpacking - I'll post for real later!!

Merry Christmas and Happy New Year!