[JustLovelyJenn]

I have posted a few times about being a caregiver to my son with autism. A friend today pointed out just how much extra I do to keep my house running smooth. It made me think about my stress levels.

He is ten now.... and my son requires a few extra things at home.

We run a three part behavior program in our home that has to be monitored daily and weekly. He tracks his three chores each day which must be written on a board before he gets home from school so he can check them as soon as he walks in the door. For this he can earn up to $5 a week. He tracks his behavior at school, receiving a yes or no for morning preparations, behavior at school, and completion of homework each day. This requires an email to his teacher every day because he can not be trusted to bring a report home. If he earns 80% of these points he can have a Slurpee and a slice of pizza at 7-eleven on the way home. And we track "respect" at home. If he responds in appropriate respectful ways during his home time he receives 30 minutes a day of computer time on weekdays and 90 minutes on weekends. Disrespectful behaviors like yelling and refusals loose him 5 minutes at a time. More than 3 weekdays with lost time and he looses computer for the weekend.

These guidelines were developed with the help of every adult in his life including his therapist and have to be followed exactly. He has to get his allowance on time or he melts down. He has to get his pizza every Friday or he melts down. He can not do more than three chores or he melts down. Everything had to be carefully worded and explained. And then it took almost two months to get him to do the things we expected with regular success and minimal meltdowns.

We have to plan outings no less than two days in advance. Outings require drop bags that have meds, food, toys and electronics if they are going to be longer than one or two hours. Schedules have to be visually displayed in advance and must be followed. If a change is going to happen in the schedule or an outing is being canceled a rescheduling must immediately be presented, especially if the outing is desirable.

BUT, even with all of this, today I was reminded about the hardest part of taking care of my son. Its effect on my daughter. My son looks normal, he's smart, and he can out think you most of the time. He is physically capable of doing everything anyone else dose... but emotionally and mentally he just doesn't understand so many things. It's hard for my 12 year old daughter to understand why she is held to different expectations than her brother. Why she has more responsibility than him and why she feels like she has to "pick up the slack" so much of the time. I do the best I can to give her extra opportunity to do things she loves. Extra time with her friends, and outside of our home. But she's a caregiver too, and she doesn't even understand it yet.

That made me sad today.