Friday, June 19, 2015

Sunshine on the Yellow Brick Road

It would not be me (and it would bother me) to not put this disclaimer on this post... ***I am too tired to do my usual "re-read and make corrections prior to posting" routine. :)

My brain is on overload right now. Part of it is muddy and unclear, part of it is a spaghetti system of highways consisting of fast moving thoughts complete with the occasional sudden stop and traffic jam that quickly turns back to mock speed. Yet another part is stuck in processing at speeds that vary from barely moving at all to an occasional trickle. This is causing me considerable anxiety, relief and eagerness. Every day we gain so much information, guidance and strategies....regardless of how well Jenna's systems are a "go". Getting her nervous system regulated and ready for therapy has not been an issue, as Jake, John and Lindsey are perfectly capable of helping her with that. Unfortunately though, Jenna's GI system is playing a large role in her endurance for challenging her nervous system for long periods of time. She has been such a trooper though and has definitely gotten much from every sessions. We are getting a TON from the sessions. We hope to get her GI system on more on track over the weekend so that she can ensure more challenge like she did the first two days we were here. I have always said that the little things actually trump many of the big things when it comes to reaching milestones, especially because without the small things, there would be no big least not as often with "special needs families". Then again, so many of the small things that I am referring to were once steps ALL children accomplish, only they are accomplished without as much notice because they come sometimes faster, many times easier, and naturally. Some things do come easy for Jenna. Some things do come naturally for Jenna. Lots of things come about by unique paths not traveled by "neuro-typical" children. The mapping and planning for some of the pathways that are usually created in the brain are being re-considered and foundation is being set for building.... due to loss from her brain injury. We believe that Jenna's brain is completely capable of acquiring the needed mapping, which is a gift beyond measure. It may take longer, it may take multiple failed attempts on our part in knowing how to best set up the correct "environment", but because she is a fighter, because she has the desire, because of our belief in her potential, those pathways will get built. They may appear differently, they may veer off in various directions, they may dogleg to left when a right is anticipated and throw us for a loop, but those pathways will be built. We are helping her to build the "yellow brick road" one stone at a time. I've tried to process new information and a multitude of emotions along the way by looking to make connections with previous experiences, things I've learned, things that make me wonder. Then I try to find elements of similarity in the things that are unfamiliar. One of the most difficult things for me to get a firm grip on is what it is like to have a dis-functioning vestibular system. Not knowing where my body is in space, not knowing where my arm is in relation to something across the room, not feeling soft food in my mouth and therefore not being able to manipulate different foods in order to even try them. I do not know how it feels to not feel the extreme heat from a burning stove burner or piping hot water dripping from the faucet. I doubt if I have ever had a delayed response to an ant bite and when I did respond it was with giggling. The ant bite provided much feedback so my body could finally register the feel, yet still it interpreted it as a tickle. I cannot imagine not having reliable body awareness to interact appropriately with action.....move, touch, speak.... Sensory Integration Disorder means all of these things and so much more for Jenna.

I used to say that her world is so different than ours. As if she was born in another place, one with different gravitational properties and now she is living in a place where for everyone else, gravitational pull and a correctly functioning vestibular system and proprioceptive system are enough to equip her for "normal" function and living. I still see it this way many days but I also see our world and her world being one in the same yet experienced completely differently. Oh, how I wish every day I could jump into her experience to better understand her struggles, to see what motivates her actions, to feel what it is like to float through the day gaining spatial awareness only after receiving needed deep pressure, muscle and joint feedback by way of jumping. When you and I wake up every morning, our nervous system, for the most part wakens and regulates with little noticeable effort. Sure, some drink coffee, some exercise, some eat certain foods for breakfast in order to set themselves up for a productive day. Those with SPD require putting forth much more effort to reach that regulated state. The needed state in which we are able to learn, navigate, communicate effectively, work and play. With SPD, there is always a very fine line with finding and maintaining. If you are not careful, one can go from an under-responsive state to an over-responsive one really rapidly and without much notice. We have learned many of the signals that Jenna's non-verbal and verbal communication provide us. We are still learning the subtleties that will help orchestrate our treatment plan at home. Jenna has always had low muscle-tone and weakened core strength. This is an area that has been a focus for years and will continue to be a key factor in all areas. We have gained so much knowledge about how low tone effects so many things from being better equipped to trying new foods (I will explain this later), to navigating different terrain confidently, posture, being able to attend to visual input, being able to participate in daily physical activities without experiencing extreme fatigue, not being as attentive or alert, the list goes on. Having low muscle tone and low core strength means things that kids enjoy doing can be taxing......swinging, riding a bike, sitting at a table to eat, playing, etc. There are so many things that we can do as her parents, her family, her loved-ones and friends to help Jenna build those pathways. There is so much we can do to help her gain body and spatial awareness. We can also help empower her in order to gain confidence in navigating, exploring, growing and accomplishing-socially, emotionally, and academically.

We have such a supportive family, made up of relatives and friends. Jenna has all of the needed essentials for continuing to grow, learn, become and accomplish. She has the drive and motivation, she has the determination and perseverance. She has the knowledge, the growth and the capacity for continued learning. She has humility, compassion and curiosity. She has a sweetness and love that reaches beyond the stars. She has the support, belief and love from all who know her. Her daddy and I marvel every day at the small things. Sometimes trying to accomplish those small steps are the most painful to navigate but they are always the sweetest of victories. I am so blessed to be able to hold her hand every step of the way. This girl is the sunshine that warms and sheds light on that very path that we collectively build, one stone at a time.

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