Thursday, February 8, 2018

The Courage to Fight

As I reflect on recent events, I am reminded that this Fragile X life will have its challenges. The negative effect of this genetic disability inherited by my 2 precious sons rears its ugly face less frequently now, but their need for assistance will never fade.

Recently, we have been even more aware of one challenging behavior in our youngest son, now 26. This awareness has led me to retreat to a dark corner where I am revisited by a past sense of doubt and fear that I have not felt since the guys were very young.

When Joe was about 10 years old, that place of doubt and fear came to its pinnacle, causing me to first retreat into some pretty extreme thoughts, only to emerge to a new place where I had the overwhelming urge to fight. At the time, I had no idea where that urge to fight came from, but looking back, it has become quite clear to me.

Prior to Joe turning 10, my husband and I learned bit-by-bit about methods and approaches to help Joe.  We wrung our hands and pondered whether or not we had the courage to face his challenges and to really act upon them using those methods.  Every single method took time and patience and resilience to learn and impose.  None of them had any written guarantee that they would work. Each one required us to be the guide and also be consistent.  Nothing would be easy on this path. They also required us to listen and watch and wait. Our inner voices were hard at work sending words of doubt into our daily routine in an attempt to sabotage our efforts.

If you’ve had the chance to read my book, “Becoming Mrs. Rogers”, (buy it here) then you know we prevailed and how we did it, but if you haven’t, then you might give it a read. Needless to say, we did prevail with the amazing help of some resources. The real courage came when we took the first step to ask for help, and the second came when we heeded that advice.

Over the years we have come to embrace many of the methods and approaches in an attempt to help our sons become productive, happy members of their community. They have many who care about them and that make a difference every day. Don’t get me wrong….nothing is perfect! But, I work hard to tamp down those negative thoughts of doubt….but sometimes it’s inevitable that they will rise to the surface.

When Joe started High School, he began to have some pretty challenging behaviors during his school day, making it nearly impossible for him to focus on any kind of tabletop activity or to participate in class.  Again, we leaned hard on our resources—the amazing team of Tracy Stackhouse and Sarah Scharfenaker (endearingly known as “Mouse” to everyone) of Developmental FX here in Denver, Colorado where we live.  We had been working with these intuitive ladies for some years, so they knew Joe, and they knew he could be a challenge at times.

My husband and I had a consult with them to go over what exactly was happening and determine, if we could, what was really going on with our “Joe Man”. We discussed the specifics of his daily schedule, his routine, and what areas were troublesome. What we discovered then was a poignant fact that remains with us today.

On a typical school day, Joe would ride the bus for about 45 minutes to get to school, then walk a little bit to his home room class. The first scheduled activity was one of the 3 “Rs”, reading, writing or arithmetic.  Inevitably, Joe would begin some kind of avoidance behavior like pulling his t-shirt up over his head, then laying his head on his desk.  Sometimes he would even cry if it was an especially difficult day. Sometimes, he would physically engage whoever was trying to verbally engage him, and this was not good.

After two hours or so of attempted tabletop activities, the students would go to gym class where Joe would be like a bird just let out of a cage. He would jump around, run away and generally not participate in any organized activity. Then, another classroom exercise followed by lunch at a table sitting down. Joe would eat his lunch, but he would not stay with his group or listen to the staff.

Just these facts alone brought up one very clear issue with Joe in the minds of Tracy and Mouse….Joe NEEDED more gross motor activities incorporated into his day. Gross motor activities are ones that use the largest muscles in our bodies, like running or walking.  This kind of plan can also be called a Sensory Diet.  I’m no expert, but I do know that a sensory diet is VERY important to my sons and it has been and will be  forever. The requirements of that sensory diet has changed a lot over the course of their lives, but it still needs to be an integral part of their day.

So, we worked with the school to come up with a new schedule for Joe, and subsequently for some of the other kids in his class.  With the change, Joe would get off the bus, put his things away in his classroom, then walk directly to gym class. After gym he would have one tabletop activity, then we created a new job task for him that involved walking—mopping the hallways. After that, another tabletop, then lunch. After lunch, we also created another job for Joe that he grew to adore—picking up trash around the campus outside. We had no idea that this task would be such a growth area for him, but the social implications were amazing. Joe was allowed to purchase his own little push cart to hold the trash, and then we taught him to use a little pincher-picker-upper thingy (do you like my technical jargon?). As he walked the campus, the other students got used to seeing Joe, and would answer his greeting of, “Hey!” We had several years of magic growth for Joe during these years after we figured out the answer to the symptoms. The schedule change was incredibly effective at changing the outcomes to make Joe successful for the remainder of his High School years.

Now, in his adult routine, Joe comes home with his amazing mentor, Daniel, after several hours of work, lunch and downtime, to our house. For the past couple of years, this has resulted in Joe entering the house with the power of thunder, throwing his backpack or earphones, shoving me (not hard), then proceeding to stomp until I swear the floor will cave in.  We’ve simply let this go on, not thinking completely about what Joe's needs are. As you can imagine, some days are worse, some days are better, but we handled each one. I had little thoughts about the fact that I needed to address this behavior, but that was it…just thoughts.

That fear of acting on my thoughts or implementing a solution allowed that voice of doubt to just keep things the same.  The voice told me that, “It will get better”, or “This too shall pass”, but it hasn’t. It didn’t.

I imagined myself in a dark room looking out into the lighted abyss not knowing what or who was out there, feeling like I was being interrogated, but not being able to see the face of the questioner. My own voice saying, “He’s ok. This behavior happens but we’re used to it and I know it will get better”.  All the while, Joe is telling us something….I NEED SOMETHING!

Last week while I was at a Board Meeting for Developmental FX, I had a few moments with Tracy and Mouse, so I mentioned the challenge and the fact that we needed to do something and wondered if they had any ideas. 

Like a switch, Mouse says to me, “Oh, Cindi, you know what to do!” 

I paused and she paused, then I said, “Well, I was thinking about a plan where I have Daniel drop Joe at the park and meet me, then we both go for a long walk before we go home.”

Mouse replies, “Or, what about incorporating some activity at the rec center as a part of his routine before he goes home?”

The conversation continued for a few moments, but these ideas resonated with me just like they had some 16 years before.  “RIGHT!”, I thought….Joe still needs his gross motor input so desperately that he’s exerting his energy when he comes home!  DING!

The following day, I sat with Daniel and Amanda (Jake’s mentor) and we discussed things they could do on days when they are all together as a foursome, and things just Daniel and Joe could do together. We are so lucky that we have such caring people surrounding both of our guys, and knowing that we can trust them to do whatever is needed.

Yesterday was day 3 of this new plan, and boy-howdy is it working! On day one, Joe was 25% better; day two, 50% better; day three, 75% better. 

Out of this enlightening exercise, two things have been real “Ah-ha” moments for me….

One: that voice of doubt has always been present and will always be there to try and trick me into succumbing to fear instead of action, but I will continue to strive to fight and persevere in the loving interest of my biggest priority—my sons.

Number two: I am one of the luckiest people I know having the resources I have and those who love us. Why don’t I take advantage of those more often? Because it takes courage to ask for help. When I doubt my own knowledge and ability, it helps to chat with someone close to me who can remind me that I know what to do.  I realize the questioner in my imaginary, dark room was there all along offering their extended hand in aid.

I just needed the courage to fight and to ask my people to help me fight it.

To learn more about Cindi Rogers and her book: Please click "Becoming Mrs. Rogers-Learning to Live the Fragile X Way"

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