Wednesday, June 9, 2010

What to do when your mom makes you nuts?!?

So my mom, she's a great lady but she worries too much. Especially since my dad passed away & all my siblings ran away out of state, she is even more overprotective of my son.  She overcompensates for not seeing her other 6 grandchildren by spoiling my son. Not necessarily a bad thing.  I love my mom but she is also in the Dark Ages when it comes to medicine. She refers to diabetes as "sugar". She firmly believes that if you have surgery and cancer is found that you will die within days (apparently air makes cancer cells grow and kill you. If oncology was only that simple, they could just suffocate tumors and one would be cured!) She argues with me over my son's Asperger's diagnosis because he is "such a good boy" why am I "making things wrong with him"?!?!

When it comes to my son needing an out of district placement for school (something our advocate agrees with), she thinks it's because I "talk too much and tell them too many things." She fails to see that my son needs help and that he cannot get through life by having my mother as his only friend. (an exaggeration. He doesn't have many classroom friends but does have friends outside of school and those that are in one grade up or down from him). 

This past weekend my son went for a sleep study. He snores on occasion. His school work is suffering. He often complains of being tired and will easily fall asleep after school or on a car ride longer than a few minutes.  I discussed my concerns with the pediatric neurologist and we decided a sleep study was in order.  "Well I think your nuts. Why are you doing these things to him?" I gave up explaining it to her as she thinks I "talk too much."  I only want the best for my son. He needs to be able to function. Sleep is a requirement for life.  Many studies have shown the adverse physiological effects non-restorative sleep has on the human body.  I want my son to be healthy and happy.  Finally she agreed to walk the dogs.  My son was fine at the sleep study, he slept as well as he does at home and was able to be fully functional for his baseball game later that day.

When I observed my son in class last October he has these "staring spells" in school that strongly resemble absence seizures. They only last seconds. In school they interpret this as "defiant" behavior, being "oppositional" and "willfully defiant/disobedient".  It's like only a shell of him is there, like his soul was stolen for a while. To get him back I have to shout his name & shake him. The guidance counselor questioned possible seizure activity.  So in November when we saw the pediatric neurologist, I mentioned this concern and he was able to schedule a 1hr EEG for the same day. Of course nothing happened in that hour (not surprising as it is a "hit or miss" test) and the test was normal but not conclusive. He wanted to do a 48-72hr video EEG but it was nearly impossible to schedule.  Since the spells were infrequent, it wasn't that big of a deal.

I've noticed him "spacing out" with staring spells on occasion. It's very frustrating as it can look like he is totally ignoring me and being a royal pain. But I didn't think too much of it as no one else said anything.  They just continued to complain that Luke was ignoring them and staring into space. I just deal. When we saw the neurologist in May, we discussed it again and agreed that the video EEG could wait until scheduling would be less disruptive to life, but we would schedule the sleep study. 

His sleep has been getting less restful. We are still waiting for the results. Hopefully tomorrow.

Flash forward to yesterday.  The advocate went to observe my son in school.  She specifically noticed the "staring spells" they happened four times in the hour, his facial affect was flat, his eyes glazed over, mouth relaxed and opened slightly, completely oblivious to the universe for about 20 seconds. This is exactly what I have witnessed (and saw the night before).  After 20 or 30 seconds he would respond to my calls or touch, usually return right back to what he was doing.  So I called our primary doctor, she said go to ER at the children's hospital (90 min away). I didn't like that answer so I called the pediatric neurology office.

The nurse said what I described sounded exactly like "staring spells" also known as absence seizures. She contacted the neurologist.

And I waited.

This afternoon I got the call.  He wants a 48-72hr video EEG.  Great. Nothing to do in the mean time except to document the "staring spells" as I witness them. (This I can do)

Crap. 2-3 days at the children's hospital.  This means I will have to tell my mom.  Crap again. "You talk too much." "I don't agree with this." "You're making things up." "Why are you doing this to 'my baby'?" Mind you my son doesn't really care. If he can read, draw, eat, watch TV, and maybe play games he's cool with this.

And maybe we'll have an answer.

But I really don't want to discuss this with my mom. She'll argue with me. She'll say that I'm making things wrong with him. But she said that about his incontinence and nearly two years after we first went to the pediatric urologist we have a diagnosis & treatment plan and the medication IS working. Even if she thinks I make it up.

But if I was that hysterical mother that my own mother makes me out to be, then why are the doctors listening to me, ordering tests, diagnosing & treating my child????

What now will she refuse to watch the dogs for a few days? She can even leave them at my house & just stop by to feed, water & walk them...they both survive just fine when I was working.

Why must my mother argue with my (in front of my son) about everything that I do?  Oh and I'm not supposed to talk or cheer for my son at baseball games, she actually refuses to sit next to me because I call out to my son when he zones out so he doesn't get beaned in the head with a baseball.  Jeez.

I wish one of my crazy siblings would move back her with their kids to spread the blame...and the grandma.

I do think she projects about medical stuff a lot more after our ordeal with my father.  She won't even set foot on hospital property. I got over it. I just don't go back to the hospital that killed my father (essentially--but that's another story).  She always was wary of medical "stuff".  She doesn't want me to have surgery because she's afraid of surgery. She wouldn't come to the hospital with me when my son had surgery last year.  But that's okay. I understand that she hates hospitals.  So did my dad... I was hospitalized a lot for my asthma as an adult. The only time he ever came into the hospital was not the time I nearly died & was intubated it was to visit my son on the day he was born.  He even came in to pick us up at discharge.

So now how do I deal with this?  What do I say to my mother without getting into another accusation fight?  She thinks I make this stuff up.  She thinks all the world's ills can be cured with Tylenol and penicillin, with maybe some Valium as needed.

I have to tell her as we'll be gone for 2-3 days.  But what do I say to avoid the fight?

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