rankly, as much as I would love to say that the daytime naps followed in the same suit as nights, I honestly cannot. I was amazed to read that naps are entirely different than nighttime sleep. Dr. Weissbluth states that, “Night sleep, daytime sleep, and daytime wakefulness have rhythms that are partially independent of one another.” He goes on to state that “healthy naps lead to optimal daytime alertness for learning – that is, naps adjust the alert/ drowsy control to just the right setting for optimal daytime arousal. Without naps, the child is too drowsy to learn well. Also, when chronically sleep-deprived, the fatigued child becomes fitfully fussy or hyper alert in order to fight sleep.” The charts presented on daytime sleep in Dr. Weissbluth’s book really hit a nerve when I saw that Gracin was not even on the low end of the curve. According to the doctor, children at his age should be sleeping between 1 and 3 hours for a daily nap or two naps roughly totaling the same amount until their 22nd month (Appendix A on The Necessity of Sleep).
Although he was now getting the recommended amount of night sleep, Gracin was coming in between 40 and 60 minutes of broken sleep throughout the day that was not the least bit restorative. In reading about sleep fragmentation, I believed that Gracin’s sleep patterns were affecting his development. His body did not know how to stay asleep. It needed to be taught, just as it did at night. In learning all about sleep schedules and how needed they are for a young child, I knew our lives must drastically change for Gracin’s health and development.
Initially, it was again hard to put my child in his bed after we had just rocked to a calm state while he nursed and prayed. Using the cues for day sleep suggested, we decided that an early lunch, followed by our rocking routine, would be the best time to produce a long restorative nap. So, immediately after our 11:30 lunch we headed off to bed for a nap.
We used a twenty minute rocking routine, while nursing, with singing prayers and then put him down to sleep. Gracin, aware of what was expected of him, protested the nap for weeks. Although, after the third week, it was only the waking up too early that was hard. He would wake up not fully rested after about 20 minutes. Following the advice of Dr. Weissbluth’s book, we again allowed him to cry for up to an hour from when he had first been put to sleep. This was the hardest time for me as he would scream, “Mama I awake” over and over.
I blamed our household situation that he was such a light sleeper. I thought we just needed to block out the background noise throughout the house. He could not sleep with the windows open. He could not have the slightest thing out of the ordinary occur before or during his naptime, or he would awaken. Although, it was not an easy task with not having our own home yet and being subject to unintended visitors and noises we could not control. I knew we could not wait to implement a structured naptime. It would be two months until we moved into our home.
To our surprise, by his 17th month birthday, Gracin was finally napping one to two hours a day and sleeping a straight twelve hours at night. I felt like I was floating on a cloud and my child was finally at peace, at least while he slept. In wanting to believe that Gracin’s sleep would therefore heal his constant movement, I was saddened to admit that it did not substantially work that way. With all due respect to the author of the book that helped my son’s sleep, it did not examine any cases of children with possibly hidden special needs or diagnosed special needs.
As Gracin’s age progressed, he only became more impulsive, less adaptable, and had an ever-decreasing attention span. I felt powerless at what I could do with a child whose activity level gained in intensity with each passing day. As a result, I was left to questioning what love even was. Love could not be purely a feeling, as I had always thought, or I would have not made it this far. Fuzzy warm feelings were diminished greatly from my mind for my child, and I even questioned the saying that “Being a parent is the hardest job you will ever love.” I could relate that it was the hardest job, but I did not think this was love at all. I was embarrassed by my child, placed into the spotlight of all eyes out in public, and made to look like I had no idea what I was doing with my little one. The games got old and my happy, calm, loving tone with my child began to diminish along with my optimistic thoughts of the future.
We were, in retrospect, in a wonderful situation, with a restored house almost completed, brand new belongings on the way, and a wedding in the upcoming weeks. Yet, I felt empty. I loved my husband-to-be, and I knew I loved my child, but our lives I did not love. I craved a feeling of love inside my being, but I did not, no matter how hard I tried, feel love. I was choosing to love, but was that what it was supposed to be: a choice? It did not seem at all as wonderful as I had always pictured in raising my own baby.
One day while reading a book entitled Love and Responsibility, written by Karol Wojtyla who became Pope John Paul II, love began to make sense again. Even the title defined this lightly used word more: there is a responsibility for acting in love. He states that “Love is an activity, a deed which develops the existence of the person to its fullest.” I was completely taken aback that everything I had believed about love was based on feelings not the activity or the decision for the betterment of another individual.
That statement explained everything to me. Of course I was not happy, and I was not going to feel happy given my current thought process. I needed to choose to accept that love was the correlation of the actions that I was freely choosing to give my child. I needed to redefine the terms in my own mind. Those choices, therefore, would allow us over time to find, discover, and peel away the layers hiding our son’s increasing needs. Love may have not seemed like enough before, but the superficial love and peaceful life that I had envisioned at the start of my son’s life was not near the true definition of a total and self-giving love.
This child did take more. His needs truly brought to the surface many emotions, including sadness and anger, but that was the realization of my own lacking, not my child’s. I had to choose to truly love him, as well as my spouse, giving up everything that came into our path as a potential detriment to our survival. I was loving all along, having the courage to do what was needed for my child even though my feelings felt saddened by those actions. I was being courageous by standing for my child’s utmost wellbeing. I had no idea I was being loving in my actions just because it “felt” and seemed hard. I had to accept that feelings can misguide a person, and, consequently, an individual will not always feel the same. A person cannot be guided by feelings alone. A person must also use logic and reason, which dwell in the mind over the feelings that can confuse the best of individuals in being a purely physiological process.
Loving the Soul Beneath the Autism is available at Amazon.com.
Read more chapters from Loving the Soul Beneath the Autism.
Copyright 2019 Janele Hoerner