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How sleep deprived can we be? How many years of sleepless nights can pass before we no longer need sleep? How empty can our buckets be? Our bucket that is full at the beginning of the day and empties steadily over the hours of managing our autistic children.

This is my question. I wish someone had invented a tool that would hold our eyes open in the wake of exhaustion. It’s amazing how much you can still see when your eyes are covered by giant marshmallowy eyelids.

Sleep… I now dream about sleep. Honestly, I dream about houses filled with bedrooms. Bedrooms with ginourmous, pillowy, fluffy, feathery beds. Room after room… every door I open… another wonderful invitation to sleep.

Unfortunately, these are only in my dreams. While I have a comfortable bed in which to sleep, nights are interrupted by “mommy alarms”.

“Mommy, my braids are coming down.”

“Mommy, will you record something for me?”

“Mommy, I wrote a new story… read it.”

“Mommy, Muffin is the cutest cat in the world.”

“Mommy, I’m hot.”

“Mommy, I want new sheets on my bed.”

“Mommy, I hurt (enter body part here).”

“Mommy, I need a hug.” This one is at the top of the list because we have learned that Katie needs to squeeze and be squeezed when she is stressed. Her cat is not happy to be the “squeez-ie”.

Since I know that the “mommy’s” are coming, I have conditioned myself to remain alert until Katie is able to sleep. Sleep… that word again. Sleep.

Autistic children often have great difficulty relaxing and falling asleep in the way we take for granted. Katie has not slept through the night since birth. For years I tried everything that had worked with my other children, to no avail. Katie would be up between five and nine times, every… single… night. Up asking questions. Up having needs. As the years passed I determined that she needed to be up when the house was quiet. This was the time of the day when she was not being driven into sensory overload by the chaos around her. This information helped me arrive at a very different method of managing nighttime with Katie. I completely changed my schedule.

You ask, “How can you change your schedule when children need to be up early to go to school?” Well, for me, having the principal of Katie’s school tell me that he was going to personally pick Katie up and get her to school on time, aided my decision to begin homeschooling. I had homeschooled Katie for first and second grade, then attempted to reenter Katie into the public school population with special education support for third grade. Struggling with her in the mornings was a nightmare come true and by the time she came home from school, meltdowns began an ended only when she was exhausted and fell asleep late into the evening. Her doctor suggested a mild antihistamine which was helpful in relaxing Katie as well as beneficial for her allergies, however, mornings continued to be tearful and miserable.

Fast forward. I tried different things but always came back to the same conclusion. If Katie was asleep earlier than midnight, she was awake by 4:00 A.M., or so. If Katie went to sleep after midnight, she slept until between 10:00 A.M. and noon, was refreshed, able to focus on homeschooling and meltdowns were kept to a minimum in comparison. She would spend the quietest part of the night with her sketch pads. Katie’s stories and artwork were created in the deep of night when everyone in the house was sleeping (except mommy, of course). I would see the light under her door and peek-in. I would find Muffin the cat curled-up by Katie’s side, Cloudy the dog asleep on the end of her bed and Katie, relaxed, bucket full, expressing her gifts. Gifts that are near impossible for her to express when the house is filled with daily events that we don’t even notice.

I also made a point of recognizing that filling an autistic child’s room with bright colors was wrong, wrong, wrong! We put her in a canopy bed with pale curtains she can pull closed and feel surrounded, safe and alone. I removed the colorful chaos from her walls and room so that it became a tranquil environment. I then filled her room with everything I knew helped her to decompress. A small T.V. with recordings of her favorite shows. An iPod with music she loves. Artists colored pencils, sketch pads and a heat/cold pad in the shape of a large cat that can be placed in the microwave when she is achy and the freezer when she is hot.

At age 12, she is now able to process when she needs to sleep, and sleep she does. It may not be the typical schedule, but it works and that is what parents of autistic children need. Finding what works is different for all of us because our children are all different. When you find success with your child, no matter how small or unusual or strange it may seem to an outsider, we know that we have done the right thing for our child. Incidentally, we shouldn’t care what anyone else thinks about where or how we find success. If it works, it works and we find some semblance of peace.

Sleep… well, I need sleep because I can’t sleep-in until noon, but my lack is Katie’s gain. When my bucket is empty, I tell Katie and she gets it. I give myself a time-out and imagine being in a hotel room, all alone. No T.V., radio or phone… just a fluffy bed, me and my new best friend… sleep…

I never forget to laugh.

© Cassie M. Ferguson, 2009, Autism Funhouse and autismfunhouse.com. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cassie M. Ferguson, Autism Funhouse and autismfunhouse.com, with appropriate and specific direction to the original content.