Pin the Tail on the Donkey a/k/a "What's Wrong Nicky"

Last night Nicky's fever flared again...he slept though the night, with no problems, woke up in a good enough mood, he had no apparent signs of illness and at 10:00 he was doing good at school. Still something was not right. That combined with my fear that we might miss something medically important meant that we were headed back to the doctor, no matter how good Nicky appeared.

At 10:45 we returned to the doctor and after an excellent medical version of "Pin the Tail on the Donkey" - complete with lots of tests - the mystery was solved. Yippee, Nicky had a mild case of pneumonia. Now the fever made since, the cranky kid made since, and the return of illness after the antibiotics made since. We had treated the ear infection, which was also inadvertently treating the pneumonia, but it just was not enough. So the ear infection went away but the pneumonia lingered. The good news is, it makes since now and he should be in great shape in 24 to 48 hours!

Now we can both sleep :-)

Note to myself and others:

• Accept the Process: I didn't much like Pin the Tail on the Donkey as a kid, and I like it even less as an adult forced to use it as the method to diagnosis what's wrong with Nicky. Such modern times and this is about the best we can do. The good news is it can work

• Always Follow Your Gut: Despite all the ways in which Nicky appeared normal and regardless of the possible explanations, I was not convinced that we had found all the problems and we had not.
  

• We Are Their Voice: This is a perfect example of parents knowing our kids the best. We know those little things that signal something is just not right. For Nicky it was the low tolerance and the non verbal noises (which by the way are kinda like nails on a chalkboard for me). We have to speak for them and just keep asking questions until we are satisfied, because we are the closest thing to a voice our kids have.

What’s Wrong Nicky? The saga continues...again

Nicky seemed physically okay this morning. His fever did not return. This is a total mystery. Something caused him to get so sick yesterday, but I have no idea what it is. His doctor is out until tomorrow so we will have to wait to see her. Sure hope she has an idea.

The only signs that things are not well are that he is doing a lot of verbal stemming and he is agitated. I can tell he's agitated because he keeps trying to pinch me - which means his body is disorganized - and if he thinks I am going to say something he does not want to hear, he's instantly ready to go into a tantrum.

However for the most part he's acting like it's a regular day. So, I decided he should go to school for an hour or so. His aid said he did well...with one noticeable difference. He was calm, he did not hit, he did not act sick, but he did not respond to his classwork. She said he just could not seem to do the work. Apparently he had a math test today and he didn't respond to the questions that she knows he understood. She's worried that he's forgotten. He hasn't forgotten. My guess is it's taking everything he has in his little body to keep it together and he just wasn't up to doing the work.

I hope we figure this out soon.

What’s Wrong Nicky? The saga continues

Nicky is not better and I’m getting tired and frustrated. I can’t imagine how he must feel.

I went to the store and my daughter called me and said “Mom Nicky’s sleeping”. Nicky does not sleep in the middle of the day, so she and I both knew something was wrong. When I got home I took him temperature and it was at 99 degrees. One hour later Nicky had a fever of 105 degree’s and once again we have no idea what is happening. The children Motrin knocked out the fever, but he still looks sad and sick. Apparently his ear infection is gone, and there are no visible signs of illness. Here we go again. Poor kiddo.

I'll keep an eye on him. Keep him home from school tomorrow. I'll take him back to the doctor and we will continue to play "Pin the Tail on the Donkey"

Words Matter - When you take away hope

“Plateau” I hate this word. I just heard it again in describing how Nicky was doing in one of his programs.

When I hear this word I feel like I've just been punched in the stomach and then I get furious and then I cry.

This time when I calmed down I asked myself “why does that word take me to such a bad place?” I’m sure the word “plateau” has a clinical meaning and when professionals use it they are just stating facts as they see them. Nonetheless I think there are some words that professionals should only use when talking with each other and not when talking to parents and plateau is one of them.

Because when I hear "plateau" I hear, there is NO HOPE he's not going to learn any more. All I hear is someone telling me that my child has reached his potential. Hell I'm an adult and I haven't reached my potential! I hear he’s not capable of doing any better. I hear he is not going to improve any further. And hardest of all I hear, any hope I have for him developing further needs to stop here, because he’s reached is full ability. I hear that my HOPE for his future - which is what keeps me going – is a fantasy and I need to accept that he's not going to do any better.

I logically know this word is used in a clinical way and not meant to hurt me. But it does hurt me and it scares me and it makes me furious. Nicky is a 9 year old, and we don’t know enough about autism and no one, not even me gets to say what he’s capable of and no one get’s to say my 9 year old has reached a plateau. No one gets to take away our hope. No one get’s to put him in a box. No one gets to say “that’s it”. Maybe that’s not what people mean to convey, but it’s what I hear.

What’s Wrong Nicky?

For no obvious reason Nicky has been more aggressive, his preservative behaviors increased and I know something is wrong. I don’t know if he’s sick or is something else is throwing him off. There are so many factors that impact his behavior from getting sick to simple changes in routines, lack of sleep, frustration, medications, weather, over stimulation. He can’t tell me, so I have to guess what’s wrong. Like many kids with ASD Nicky can’t say “Mommy my stomach hurts”, “Mommy I’m frustrated”, “Mommy the new medicine is making me feel bad”, “Mommy I’m dizzy” or “My ear hurts”. So we have to figure out what is wrong using deduction and luck.

Nicky’s frustration tolerance suddenly dropped. He was hitting, kicking, pinching and he even tried to bite me (which he had not done in a long time). He wasn’t sleeping well. He was making noises more instead of using words. He was waking up 3 or 4 nights a week. Just popping up around 1:30 making sounds and jumping up and down and unable to settle his body to go to sleep. He didn’t have a fever and they were no obvious signs of sickness. But, he had just recovered from a small fracture in his wrist and he had been taking a new medication from his neurologist. So when I heard he lost his balance getting off the bus one day and that he was tired in school – I didn’t think much of it. I figured he was tired in school because he was not sleeping at night and he sleepy getting off the bus. As for the aggressiveness, maybe it had something to due to with the new medication.

I stopped the medicine, but he was still agitated, not sleeping and his aggression was increasing in school. This is not good. It’s like domino's. Now I'm disappointed that the new medication didn't help and I have two worries: what’s wrong with him and how do we get his behavior under control so he doesn’t hurt himself or anyone else. Whatever is wrong it’s bothering him enough that he can’t control himself. He’s pinching at school and he hit his teacher. He has never hit his teacher. When Nicky hit’s me, I know it's not okay but I don't get nervous. When he hits other people I get a bit panicked inside because I know he’s too big to hit and the one thing that could keep my guy out of the mainstream is aggressive behavior. If we can’t control his aggressive behavior he’s going to be isolated from the general education and that scares me.

I called a meeting with his team at school and in his behavior program supervisor. I told them that there is something wrong with our guy, I don’t know what, but something is happening that is causing his aggressive behavior. We talked and came up with a plan where Nicky would lose his favorite activity (computer) if he hit, pinched, or scratched anyone. We all felt bad that we had to do this, when we knew he could be sick or in pain. At the same time he can’t be allowed to hit and given his age and size – even if he is sick. So 0 tolerance had to be enforced.

He continued to be cranky and then he started to get visibly sick. For me that was good news. He was coughing and he threw up (we are probably the only parents happy to see that). I took him to his pediatrician who said he had the worst ear infection she had seen all year and once again she was taken aback by his high pain threshold.

Now I knew why he lost his balance, why he was waking up at night and why he was so cranky and angry. He was in pain and it had taken the infection growing to a severe point for him to respond to the pain. Okay, well at least now we know what to do. It’s not all bad, we improved his school/home behavior plan. Which is a good thing because even sick kids who can’t talk aren’t allowed to hit.

I just wish he could tell me more about what’s going on inside of him because it’s so hard to guess. And it’s hard to know that something is wrong and not know how to help him. I worry we are going to miss something really serious that will have a life long impact because we didn’t get to it fast enough. This scares me.