Sometimes, after my husband and I slip into bed at our usual 9:30 bedtime, I purposefully avoid going right to sleep so that I can revel in the silence. The daylight hours in our home are a constant flow of noise and movement, often making it difficult for my mind to be creative or focused. In contrast, nighttime is so peaceful, quiet and somber. I relax into the utter stillness of the house, listening to the breathing of all three men as it fills the airwaves around me. Once their breathing is heavy and unrestrained, I know I am alone in my thoughts. They are all asleep. Any evidence of the day’s stress slowly begins to melt away, but as my thoughts develop, another evil begins to creep in…..worry and fear.
As a Mom, it’s my predisposition to worry. Every Mom worries. I suspect that some of my worries and fears are similar to other Moms; like worrying when my kids are sick, or worrying about a kid bullying them, or worrying if I am spending enough time on priorities. There are many common worries among Moms. But, as the Mom of two sons born with a genetic cognitive disability, I know my worries and fears are somehow different.
When our sons were very young, I had plenty of time to worry and obsess over a solution to many challenges we were facing at the time due to the fact that our youngest didn’t sleep through the night until he was 7 years old. I distinctly remember lying awake at all hours of the night worrying that our sons would never do simple little things like drink from a straw, or say their first words. Anything to do with the mouth was a huge worry, as is the case with many kids affected by Fragile X Syndrome.
Another worry was whether or not our sons be able to participate in fun things or would their days be dictated solely by appointments to therapists, doctors or structured learning?
I came across a reminder of that challenge with Joe. It was a newspaper article written about the special-needs basketball team that he and our older son did and still do play on. When this article was written some 13 years ago, Joe had only recently even been able to participate in certain aspects of the game. It took us two long years to get him to even want to be a part of basketball and to help him want to play. These poignant photos reflect his inner conflict that was so evident to us at the time….him painstakingly going through the emotions of something that was bitterly difficult for him, but at one moment he was able to turn and gaze lovingly up into the stands to emulate a kiss to his Dad—such symbolism that still rings true today in some of the life challenges he faces on a daily basis.
Then you had other worries and fears;
Would our sons ever be able to learn, grow and be successful members of their community?
Would our sons ever have joy?
Would behaviors be the only thing that people saw when they looked at or met our sons? Would those behaviors keep them from living a full life? Would behaviors always be a part of their life?
Without verbal language, would our sons be able to have friends or relationships, or even communicate their needs?
And finally, the worry that plagues every single parent of a child with a disability….who will love them when I am gone? Who will care for them when I can no longer do it? That’s a doozy. That’s the thing that keeps many, many people awake night after night after night with seemingly no answer.
When my sons, now 27 and 29 years old, were young, I didn’t choose to enjoy the peaceful quiet of the night, I was forced to lay awake waiting for the next need to arise. This seemed to reaffirm my theory that nighttime was the best time to solve all of the world’s problems. That is…until I learned to admonish those worries and fears and shift my thoughts to problem-solving mode.
At my core, I consider myself to be a very analytical person with a robust desire to think things through rationally then come up with a plan to resolve whatever is plaguing my thoughts. That doesn’t mean that my strong Motherly instincts didn’t keep me from years of allowing those wicked worries and fears to stifle my sleep until I could rationalize my thoughts. This core desire is what lead me to find people that could help me. There is no way that I could continue the path of sleep deprivation and still be able to be an effective Mother. No. Way.
I’ll go out on a limb and say that husbands and Fathers don’t worry the exact same way as Mothers. At least my husband doesn’t. He is a “fixer”; a “doer”. He lies awake some nights thinking about how he can fix a situation. He wants it resolved lickety-split and he’s just the man to do it! Sometimes, he thinks that if he raises his voice loud enough that, like magic, the desired result will appear. With our sons, the fact that it doesn’t materialize that way, can be quite frustrating for him.
I know in my heart that worry is not productive unless you act to resolve those worries—but, putting this philosophy in motion is much harder.
Many years ago, my husband and I met some amazing experts who took us under their wing and taught us things that saved more than my (our) sleep. They taught us how to problem-solve with a whole “tool box” full of methods and approaches that me and my husband could apply to our sons. Do you know how empowering that kind of knowledge can be? It’s life-changing.
They taught us specific things like calming and coping, a method called “ready-not-ready”, video modeling, side dialogue and many others that we could utilize whenever we needed to. Along with basic therapies that incorporated speech and occupational therapy, they used a combined approach to motivate our sons. As positive changes occurred, we found ourselves more motivated than ever to want to learn more and to implement these methods in our everyday lives!
We had waited years to see smiles on our sons’ faces. They were able to be calm and focus on simple things that we had been unsuccessful at engaging them in. It was magical.
The amazing ladies we are talking about are Tracy Stackhouse and Sarah (“Mouse”) Scharfenaker and team at a one-of-a-kind Denver-based non-profit called Developmental FX (DFX). Every single day this team wakes up and gets to work changing the lives of families all across the world! They have a very unique combined approach that treats not only children (and adults), but the families as well. They help parents just like us to know what to do; to feel empowered and filled with the knowledge that we need to help ourselves and our children. Do you have any idea what that kind of knowledge is worth?????? We. Do! As a Mother of two significantly affected sons with a challenging cognitive disability…I DO!
This kind of knowledge is the difference between worry and action. I remember an evening many years ago after the boys had gone to bed, we started to reminisce about the big growth curse the boys were on.
I looked at my husband and said, “What do you think about the idea that every single thing we have grieved about, every single thing we have been fearful of, and every single worry we have had; it’s all been about us?”
He looks at me like I have two heads and says, “What do you mean?”
“I mean that, these boys were born with Fragile X Syndrome. They do not know any difference. They do not know the fears we know. They do not know worry the way we do. They only know what we project and what we show them.” By now tears were streaming down my face.
I continued, “Look at what they are capable of if we project confidence. Look at what is possible if we commit ourselves to teaching them and helping them. Everything to this point has been about our own grief, not about what they are capable of.”
This revelation has been the pinnacol in our lifetime of learning and continues to drive us to want to know more. It keeps us searching for answers and resolution to worries and fears that we face. Some fears are ongoing and continue to show up at the top of the “to-do” list—the resolution too scary for us to face, i.e., “who will love them when we are gone?”. But, it must be done. An answer must be found, eventually.
So, we continue to reach out to those amazing, dedicated, Fragile X whispers called Developmental FX to help us sleep peacefully at night and not allow those evil fears to dominate our thoughts. That’s why I, personally, have dedicated the past 15 years of my life to helping them spread the word about the incredible work that they do. It’s worth that much to me. I want every family I know to have the same benefits that I have had.
*So, today I want to ask you to consider how much this kind of peace is worth?
*Is it worth $10 or $20 or $100 to have THIS organization continue to give peace to families?
*Consider a world without them…..
To have access to people who know what you are going through; to have a solution; to allow you to help your own child; to help you see joy on your child’s face; to give you as a parent the confidence to deal with just about everything that comes your way, or to be able to call when you can’t….this is what DFX does. That’s what they have done for us.
Today, we feel like we have the basis of knowledge to be able to cope with whatever fear comes our way, whatever challenge comes our way, whatever life throws at us
…..it’s a good thing because 5:30 a.m. comes early and quick.
To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld
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