My feelings on the matter
My sister once gave me a pin that said “Be the type of woman that when your feet hit the floor in the morning the devil says, ‘Oh crap she’s up!’” It made me laugh, and I am sure it is something to aspire to, but most of the time I feel like I am the type of woman that when I hit the floor in the morning the devil says, “I didn’t know she even went to sleep!” I have mornings when I hear the doors start to open and close to the kid’s bedrooms that I just want the day to not start again. I don’t want the monotony, the pleas for help, food, clean clothing and the all-encompassing question, “What are we going to do today?” I have tried to go on strike, retire, turn the reins over to the kids (which have never been taken, surprisingly enough), but alas the buck truly does stop with me.
I started working nights in 1996 when Keaton was 2 months old and continued until 1998, just about three years and two more babies in between. When I quit, I was certain I was going to finally be able to catch up on some sleep. To put it quite simply, the sleeping fates were not in my favor. In a 24-hour period, there were only three hours that the kids were all asleep at the same time. I was up and down constantly all night long, nursing, shushing, and trying to get three very energetic children back to sleep. My days were filled with speech therapists, occupational therapists, pre-school, field trips, doctor’s appointments, ear surgeries, oral surgeries and to add some excitement, I eventually added two more beautiful little girls. To put it mildly, I was getting a “butt whoopin’.”
I once saw a movie trailer with a line that said “HE’S TRYING TO KILL YOU!” I thought of that line often, only in my head it read, “THEY ARE TRYING TO KILL ME!!!” There were times when I understood why animals in the wild sometimes eat their young–they just wanted to sleep. I look back on this time and wonder how I ever survived it. When you are in the moment, you sometimes don’t realize the toll it is taking. I truly believe that the only way I survived was that I was being watched over and given everything I needed by a very diligent, wise and kind Heavenly Father. I was able to make it on three hours of sleep, I was able to “run and not grow weary.” This does not mean I did not stumble or crumble under the constant—the mind numbingly constant—pressure of raising children, this just means I was given what I needed to make it. It also means that I know one can only run like this for so long before breaking.
I had an “AhHa!” moment one afternoon when I was sitting around listening to a group of mothers talk about their life and children and all that they are doing and accomplishing. Sitting there listening to the group, but not joining in the conversation, I realized I had forgotten how to visit, share, or be social. I had been so wrapped up in my own little world (which ironically enough I was trying to teach my children to not be in), that I had literally shut out everything and everyone else. There had been times over the years when I longed, truly longed, for someone to talk to. I have an amazingly supportive husband who listens to me, but it was something more. I needed to be Regina, not Mark’s wife and Keaton, Emma, Benny, Rosy, Ella’s mom. I had lost Regina.
Finding myself again started rather slowly for me. I took time to start running, then biking, then going hiking for a few hours on Saturdays. Still, I was doing all of this alone. Finally, a woman named Nancy came up to me and asked if I wanted to start running together. It was a simple request, but I found myself very nervous about answering and told her I would have to look at my schedule. Now all of you mothers reading this right now, who have autistic children, know very well I knew exactly what my schedule was every day. I went home and truly started thinking about it. I could not think of a good reason to tell her “no” and I am so glad that I said “yes.” I had forgotten how nice it is to talk to someone about mundane things. At first, I would actually get a sore throat from talking to her because I was not used to talking so much at one time. This running lead to a girl’s night out with some other ladies, and eventually, I caught myself actually visiting in church with people!
How silly this all sounds. These are not life-changing moments or trips to exotic lands, but this simple act of allowing myself to enjoy conversing with others brought me back to an aspect of my life that had withered away. I still have a hard time initiating conversations, not because I don’t enjoy the company. I think I may always be a little bit shy about opening up. Last year, for the first time in 12 years, I went to my parent’s house by myself for 3 days! I was not quite sure what to do with myself, but I relished the indecision. This year, I am going to attempt a 5-day getaway to a lakeside cabin with a friend. I may come back a party mama!! Mainly, I know I will come back a better mother because I took time to replenish me.
I have discovered at least one other source of stress relief. For some odd reason, swearing helps me immensely. When I feel things boiling inside me, cursing has been a quick and effective release valve. I don’t want anyone to think that I became a sailor overnight. I like to believe that swearing vocabulary is very harmless on the scale of swear words—if such a scale exists. I once reconsidered the wisdom of swearing when I overheard Benny when the DVD stopped working one day when he was watching movies. This event got an “Oh sheet” out of him. I thought it was funny. I don’t think many other people would think it is funny. It figures that Benny would stop using movie lines just long enough to steal one of my swear words so I would not be able to justify using it any longer.
Another time, I was trying to unzip Emma’s dress when the zipper broke. Emma was standing there with both fingers in her ears looking down at her zipper when she said “Dammit!” I would like to remind my readers that Emma does not talk. I was so stunned, I called my husband to tell him that had found my calling in life: I can teach autistic children to swear! I believe Heavenly Father has a sense of humor. He knew the best way to teach me a lesson about swearing. I guess He knew that if my kids swore (especially the two that speak only in movie dialog, or not at all), I would seriously reconsider the use of my newfound swearing skills. I may not use curse words out loud as much as I used to, but believe me when I say that I regularly scream swear words in my head. This talent comes in particularly handy when my children get lost, and unfortunately, this happens often.
As I have been considering some of my bad days, I have attempted to think of the moment or event that has stuck with me with such clarity that it qualifies as the most dreadful of “moments.” I can think of only one, because it even still brings the emotions back. I was renting a little lake cabin on Diamond Lake in Washington State during the period of time that I was going through a divorce. The kids and I loved living there. It was, to quote Dickens, “The best of times and the worst of Times.” There was not a bathtub in this little cabin, so I would bathe the kids in the kitchen sink and decided to give Ben a haircut on this particular day. In the process of cutting Ben’s hair I also nicked his ear. The ear, I discovered, has a surprising capacity to bleed……a lot.
Naturally, Ben started screaming, which in turn made Emma start pounding her head on the floor, causing a bloody nose. The sudden change in emotional atmosphere pushed Keaton over the edge and brought on a screaming tantrum. I stood there, scissors in hand, knowing I had unwittingly initiated the brouhaha. I stood there, looking between bleeding children and trying to decide which one I should tend to first. Ben won. My guilt forced the decision on that one. After many tears (my own included) and much blood, we were able to bring peace back into out little home—that is until later that night. I still call this event “The Big Flu of 2000.” All four of us got completely slammed. One of the interesting quirks of raising autistic children is that they are not usually able to let you know when they are going to throw up. I eventually learned to be able to read the signs. If Keaton started walking in circles, it was coming and I would follow him with a bowl. Emma simply throws up and Ben does too. This would be fine, except during this particular event, I was compelled, against my will, to join the foray of vomit.
By the end, the four of us had contaminated high chairs, towels, bowls, bedspreads, and throw rugs, all of which I simply threw out the front door because I was too sick to clean them. Because it was still freezing outside, and because he had not heard from us in a couple of days, my Dad came over to check on us. As rounded the corner to our front door, he was confronted by a disconcerting sight: Most of the contents to our little cabin were cast out into the snow—all in one frozen-vomit-encrusted pile of wretchedness. I wonder if he ever fully recovered from the shock of it.
When the kids were first diagnosed, I believed I was up for the fight. As with any race or endeavor, the start is always the easiest. You are fresh, naïve, and certain that no one can go at it as long or as hard as you can. What I failed to realize in the beginning, was that this race was going to become my LIFE. In races, especially longs one, there are pit stops to refresh and nourish your tired body. It is critical to take the pit stops if you want to finish the race. For a while, I would not allow myself any pit stops, and that was a critical mistake. If I could share one message with mothers of autistic or disabled children, (in fact, with mothers and fathers of children in general), it would be this: the kids will not fail if you take time off, the world will not stop turning, there will not be a day without night, and no, your husband will still not clean the house like you like it done no matter how many times you have explained it.
I have had, and will continue to have, moments of utter despair. Every day I deal with the possibility of momentary failure, or with the monotony of being in a rut that never seems to end. My husband has held me in his arms when I have sobbed my heart out because one of the children have regressed for no apparent reason, or seemed to have just hit a plateau. I have walked calmly into my room and shut the door only to scream as loud as I can.
I have many days when I have gotten angry at my situation. I have thrown things at the TV after watching yet another report of a miracle cure, knowing that phone calls, always well-intentioned, will be forthcoming, asking if I have tried the latest sure-fire treatment. I have felt so alone that I believed no one could possibly understand me. I know how much it hurts to hurt. Raising autistic kids is a very literal battle of blood, sweat and tears.
On different occasions, short passages from hymns have had an uncanny ability to restore me to a sense of peace. Here are some of my favorites:
“He answers privately, reaches my reaching.”
Where Can I turn for Peace, text by Emma Lou Thayne
“When disappointment, grief, and fear are gone,
Sorrow forgot, love’s purest joys restored.
When change and tears are past,
All safe and blessed we shall meet at last.”
Be Still, My Soul, text by Katharina von Schlegel
“When through fiery trials thy pathway shall lie,
My grace all-sufficient, shall be thy supply.
The flame shall not hurt thee; I only design
Thy dross to consume and thy gold to refine.”
How Firm a Foundation, text attributed to Robert Keen
And on my very worst days, when even a hymn won’t cut it, I remember this: “Trying is the first step toward failure.” –Homer Simpson.
Above all, I have hope. Without hope there is doubt, fear and despair. With hope there is happiness, joy and the faith that better things are coming because honey, sometimes they cannot get worse.