Bad Days

Wow! I can't believe how long since I've written on here. Therapy appointments, a new Facebook addiction, and the holiday season have kept me from updating this page.

I have been concentrating on John's progress and the success's we have had since beginning early intervention. ( see 2 posts below for John's progress under "Neurofeedback Testimonial" ) Today, I want to take the time to talk about the struggles we have in raising a child with Autism. Since beginning early intervention, we have had extreme highs and dramatic lows.

A few days ago John had 3 meltdowns in the afternoon. These are not temper tantrums, but emotional meltdowns. Many times with autistic children, if anything is slightly 'off', if they feel sick, or they are having trouble figuring out their emotional state, they have these meltdowns.

For John, it began at naptime the other day. It's the kind of meltdown where the tears won't stop, you can't console the child, he can get hysterical, the cries turn to screams, and there is no apparent reason why he is upset. He appears uncomfortable, constantly moving and wriggling. Holding him is almost impossible because he doesn't want to be comforted. Talking to him makes the screams get louder. Rocking him makes him irritable. Time only makes the rage worse. As a parent, you go through a wide range of emotions during the meltdown. It starts with compassion and a sense of wanting to calm him down. Frustration creeps in as the meltdown continues. As his anger builds and you try everything to calm him down, your anger builds, as you try to remind yourself that getting upset is not going to help this situation. At some point, I begin to wonder what kind of impact episodes like this has on Katie, who is laying in her bed, one bedroom away, trying to take her nap. The next emotion you feel is failure and somtimes you begin crying with him, wondering why he has to be this way.

A few days ago, the first meltdown ended 40 minutes later when he became so tired and just fell asleep. He slept for an hour, while I re-charged for round two. The second he woke up, he picked up from where he left off. This time I couldn't stick with it. I called my mom, frustrated and felt like I just didn't know what to do. I had him on the lounge chair with a blanket, with his shirt off. He ripped it off at some point and wouldn't let me put another one on. I think restraining him would have been the only way to get the shirt on, but I had no energy for that battle and decided that if he wanted his shirt off, he knew better than me on this one. He wanted to bury his head in my shoulder and cry. He kept sobbing and wanted to pinch me under the armpits. His hand kept making its way into my shirt and I kept taking it out, which infuriated him, but I wasn't going to let him hurt me. I kept thinking to myself that this kid is only 3 years old and I'm the adult. My mom stopped by and when the door opened, he stopped crying and just looked at her. She walked in and said one word and the crying continued. She offered to hold him and he screamed "mama" and wouldn't let go of me. After another 15 minutes, he fell asleep on lap while my mom and I were talking. She left and I let him sleep on me for a half an hour and then I rolled him onto the couch. He stayed there for 2 hours. He never sleeps that long in the daytime, but he wore himself out.

When he woke up, he wasn't very happy and cried a little bit more. This time I had reinforcement --- Bill had come home from work. He responds better to Bill at times --- I think John gives me the worst of it. He wouldn't eat dinner, but we had to go out. Putting him in the car and eventually stopping at McDonalds changed his mood and he slept well that night.

Episodes like this are becoming a lot less frequent. In fact, we haven't had one of these in a very long time. But, it reminds me of where we came from. As a baby and up until last year, John had these episodes almost every day at 3 or 4 o'clock. I never knew what was wrong. I blamed milk, gas, his stomach, maybe he was sick, etc., but sometimes I don't even think these kids know what is wrong. It reminds me of where we've been and although we've made tons of progress, it also reminds me of what we are dealing with. Prayer, tears, friends, family, Bill's support, and my mother are getting me through this. Now, my prayer is strength to deal with the third child that is on it's way....