Class on Empathy

Last night our class in NAMI was on empathy. It hit home pretty hard. Not only in reference to Joshua, but me as well. Sometimes I need a little of that too.

There are so many things I need to work on. Patience wears thin after a while. Of course the intructors tell us that we are human and need to give ourselves a break. We will never do this perfectly and that's okay. But that does not erase the guilt. I think I'm a damn good mother, but there are moments I always end up regretting. Joshua is such a high needs child with a crazy mixture of diagnoses, it's hard to keep up. And for the past year we have been together 24/7 except for respite one day a week.

I hear the stories from other parents who deal with similar issues and I think, "Thank goodness I am not the only one". It was strange last week during Joshua's social skills group. A few of us parents were in the lobby and struck up a conversation. The support and comaraderie is awesome. But, as we all sat there and told our stories and child's histories, they looked at me and said, "I thought we had it tough, but you have it ten times harder". I wasn't sure how to take that. At first I was almost offended, but then I realized that these people actually cared that it was so difficult for us. They understood the work it takes to deal with all of it. For the first time, no one said, "well you could have it a lot worse", they just sympathized and held my emotional hand for a moment. It was a feeling I never had before. It was a Wow experience for me.

In the midst of all of this preparation for the school meeting, I am reminded of how much Joshua goes through and in turn, so do we. I am reminded of how many people, even within our own family, that just don't "get it". It's not an easy thing to grasp. I've been doing this for over 12 years and I still don't know what I'm doing! But I learn, every day, every moment, I educate myself. I listen. I read. I research. I observe. I am a firm believer that you can never learn too much, there is always room for growth in your life.

I made a page for the meeting. It has two tables. One listing Joshua's diagnoses and how they may present themselves. And then one with a list of his medications and their side effects on him. I am hoping that this will give them a condensed view of just how serious his illnesses are. I would like to go in there with high hopes, but that would be stupid. I've been battling the school system since he first entered preschool. I don't think that things have suddenly changed over the past few months.

I will share this with you so you can see what I am presenting as just my first page to this stack of information.

Diagnoses: Autism Spectrum Disorder (shown in symptoms such as flapping, social and communicative challenges, Obsessive Compulsive Disorder, Sensory Integration Disorder, slow processing, some body rocking, repetitiveness, rigidity (mentally and physically), difficulty with transitions), Bipolar Disorder with Psychosis (history of auditory and visual hallucinations, impulsivity, distractibility, defiance, night terrors, insomnia, mood swings, rages, suicidal thoughts, self care issues), learning delays, small percentage of Cerebral Palsy in lower extremities, low muscle tone, anxiety disorder, migraines. Two previous hospitalizations due to psychosis. (age 4 and right before turning 10 years old)

Medications and side effects:
Lithium- Hand tremors, thirst, hypothyroidism, “spaced out” feeling, balance problems, cognitive blunting, lethargy, drooling
Perphenazine- Sinus issues, drowsiness
Synthroid- None
Abilify- Nausea, weight gain, drowsiness, over heating
Metadate CD- Dizziness, Headaches
Tylenol- Drowsiness (taken only as needed for headaches/migraines)

There is more going on with him, but these are the parts that pertain to his school placement.

I'm tired!!! LOL