Last night, the boys and I retired to the basement for our evening routine. After we were fully settled with our cozy blankets, remote and snack, I realized that I had left my cell phone upstairs. For just a moment, I considered unfurling from the blanket just to retrieve it, but decided against it. It wasn’t the first time this had happened…and, somehow I survived. We enjoyed watching some football, then Charlie Brown before the guys were ready for bed.
I got them all tucked in, and returned to my hopefully-still-warm spot to shift to “This is Us” and some quiet moments to myself. Dang it! I, again, left my phone upstairs. I paused the program, unfurled, and retrieved it. As I browsed the home screen I realized that nothing earth-shattering had happened. No one needed me. I survived. This was all ok. This has been my coping mechanism for several months now. No overwhelm by the likes of technology. Very little by way of Facebook or Twitter.
Technology is one thing as I age that I have difficulty coping with, so I’ve decided to take it in regulated doses. Just for grins, I’ve dedicated myself to trying to talk to friends on the telephone (yes! LIVE!) once a week. Yes, I still text, but, I need some connection to people’s voices. With all of the "social" media, there can be a real lack of human contact! In fact, I predict there will soon be a severe shortage of oxytocin, the chemical released in our bodies when we receive a hug. I refuse to be a part of that world! I NEED hugs!!
I’m so thankful that I was born with, or learned some coping skills that help me every day. They come in all different ways and means.
When I was a little girl, maybe 4 or 5 years old, there were rare times when I would get into trouble for one thing or another. Discipline would be issued; a swift spanking followed by alligator tears, then I would be condemned to my room where I was told to “think about what I had done”. I would lie on my bed, hands crossed underneath my head, and think about what every other person in the world must be doing…while I was suffering what I was sure was the worst and saddest time ever in my life to that point. I imagined that other kids were out-of-doors playing games or riding their bikes. I imagined that people were laughing and going about their happy lives while I was suffering a fate no one else on earth could possibly be facing…alone. I had no intention of thinking about what I had done wrong. I preferred to think about how awful I had it while every other single person on the planet had happiness. Silly, I know, but this kind of thought process, I believe, was my own way of coping. It helped me get through those few hours until I was released once again to play another day. Not bad coping skills for a 5-year-old!
As I’ve grown and new experiences have come my way, I’ve had to adapt and learn how to cope with both good and bad. I suspect most human beings have similar situations. But, now I find myself in the midst of what I call the AGE GAP! This will require some extra refined coping skills. So many things to cope with.
The Age Gap seems like it crept up on me without any notice. It’s like this physical place between the future and the past. When one tugs at me the other relinquishes, and visa-versa. I’m developing ever-new ways of coping with this one.
According to some news reports, it seems that human-kind is obsessed with erasing the facts of the past and creating a new narrative. Mind you, there are lots of parts of my past that I wish I could erase, but on the other hand, I find it difficult to find time to even dedicate to those issues that I cannot change. So, I cope by ignoring. One decided thing I did to help was to “cut the cable cord” back in February. Believe it or not, it was easier than I thought it would be! Even my two routine-oriented sons have not missed it one bit! Here I was thinking we would keep it for them! Boy, was I wrong! Life goes on without a constant sound of cable news in the background. I’m pretty sure someone will let me know if the day of my birth is erased.
Despite all my efforts, another issue of future events constantly invades my day-to-day, forcing me to pull out every coping skill I have to muster……holidays. The onslaught of Christmas regalia in September causes a whole new group of problems to arise in my household.
I have two amazing sons that both happened to be born with a genetic developmental disability called Fragile X Syndrome. They’re adults now, so we’ve been around the block more than a few times, but holidays fester up some of the old challenges. Christmas can have its own set of challenges for our guys; what gifts to buy someone with limited interests and still make it fun; how to incorporate so many new and unfamiliar things and situations into the already-established routine; arming them with coping skills while everyone around them is stressed out and excited; how to help them cope with all of these things while still coping ourselves.
Besides all of that, they both work at retail establishments so you can guess what happens with regard to holidays in those environments….yep! Stuff, stuff and more stuff. Once the summertime paraphernalia has been clearanced, they make way for holiday garb. Don’t get me wrong…I’m not anti-holiday. I’m just pro-timely holiday stuff. This challenge brings forth a whole new approach to coping for my husband and I. Without good coping skills we would surely be admitted to a mental hospital.
As a matter of routine, both boys have learned that once Halloween is over it must mean that we skip directly into Christmas. Thanksgiving is just a dinner in their mind--nothing to really look forward to. I get it that kids love Christmas. I get it that most of society spends a huge majority of their year preparing for one single day, or two single days…..I just can’t spend 1/3 of the year hearing about it! Even though our sons are verbally limited to a mere estimated 100 words, “Christmas” is certainly one of them. Constantly. One of them. Repeat. My husband, Chris and I have become totally unconventional when it comes to Christmas in an effort to keep ourselves at some level of sane.
Last year, by the time we got to December 1st, our oldest was beyond his ability to really cope with the anxiety associated with such an exciting upcoming event. I did everything I knew how to do; I prepared visual calendars exposing only one week at a time in order to try and help him slow down time; we waited to put up the tree until after December 1st, when normally I would put it up Thanksgiving weekend. Nothing seemed to help. Both guys were losing sleep over it which meant Chris and I were losing sleep over it, too. We could not slow down time enough.
In some ways, it’s a blessing that our two sons are on the severe spectrum when it comes to Fragile X Syndome (www.fragilex.org) because this allows us to “manipulate” events. So, that’s what I did. I created a new calendar showing that Christmas would take place one week early. We had to get it over with. Then, we booked a week away in the mountains during Christmas week to enjoy some down time. I know…..I know….the religious day and all…..but, for us, we had to help our sons. They do not understand all of that, but they do understand the word “Christmas” and know that a lot of excitement correlates with that word. It was glorious and relaxing.
The regalia has already begun in stores as expected and so has the verbal perseveration over “treats” (tomorrow, thank God). Our coping has already begun, too. I’ve booked the same week away and we look forward to it. This year I plan to put it on the visual calendar once December rolls around. My favorite holiday is Thanksgiving, so I’ll cope by savoring a long weekend and time spent in the kitchen. We even expect some family to come by, so this will add to the festivities. I cannot change the course of events as they happen in society, but I will do my best to pull out all of the coping skills and hopefully, enjoy some small moments of joy as we go along.
The coping also continues just about every day as Chris and I endure the Age Gap, especially when it comes to retirement. This is a tough subject to even write about…believe me. There is nothing good that comes from aging when you have kids with disabilities. We are rounding the corner and are within 10 years of that event. Some of our friends have already retired. Having two sons that will always need supervision, with or without us, is a gut-wrenching fact. Unlike many of our friends, we have special circumstances that will surely take our retirement on a different course than any of them. The anxiety that this produces is more than I can even think about in one sitting.
I’ve written in much detail about our plans for our sons in my book “Becoming Mrs. Rogers”, so I won’t rehash that. The fact still remains that we continue to age and the transition grows closer and closer. It's a' comin'! Our priority list grows longer and longer. It’s times like these that I feel extremely blessed that I’ve learned how to cope with such a monumental task. I have a very organized mindset. Chris and I still have the physical-ability to work, and boy, do we work. We have the means by which to do something. So, we will continue to put one foot in front of the other. We will continue to think about the end goal and hope that we can achieve each step on the journey that lies before us. This one thing will be more and more of a priority for us as time goes by.
Somehow in all of this chaos and coping, I hope we can enjoy each day and relish our time with friends and family. I think we can. We are here right now….right this minute….we just need open our eyes to see the small moments of joy.