Thursday, July 2, 2015

I think I can, I think I can, I think I can but what if I can't?

I have a fear of failing. Not that failing is all bad. It does give you an opportunity to learn and grow, When it comes to failing,I would rather fail that not try. No matter what, I will ALWAYS keep trying. When it comes to my children though, failing is not a real option. may take some failed attempts but those failed attempts will pave the way for them to grow their own wings.

What is Floortime?

Before I share my interpretation and "take-aways" from our experience with Jake Greenspan, here is the link to their website in which gives an overall summary of the approach.

Veering Off and Re-Organizing

I have many posts sitting in my draft folder because I have veered off in many different directions than I wanted to go with this blog. Sometimes I feel as though I have ADD, the way my mind races in so many fragmented directions-ha!

As we finished up the last couple days in Maryland and have gotten re-settled into our day to day lives, there has been a lot of processing going on for me. I have found that I have been able to release some anxiety through writing of the information and changes that we are in the process of making. Originally I intended to keep this blog solely for sharing the progress and events of our visit to The Floortime Center, how Jenna was doing with Floortime and for sharing what we learned with those close to Jenna. I do wish to continue in this way. I am posting a couple threads that include my veering off into my thoughts on the "BIG" picture though.

I guess if nothing else, this random back and forth nature is a reflection of what it is like to receive so much information and figuring out how to best apply it all...all the while being mom to twins, wife, home owner, teacher planning for a new school year (this is an exciting part of the school year for me), and ME.

Anecdotal Coping? UGH!!

I feel that I have learned so much as a mother along the way in our "special" journey. There remains so much that I have yet to understand. There is so much that I struggle with. I have read many special needs parent accounts that many parents feel as though their child's disability is a blessing in disguise and that they would not have things any other way. I must state that I am not here to judge anyone's feelings, thoughts, or manner in which they process and accept challenges that they are faced with. I am very much a believer in "to each his own" and you truly do not know until you've walked a step in others' shoes. I feel as though I must precede what I am about to share with saying this is not meant to judge others, belittle or look down at other parents. What I am about to say is only relevant to my life as I stand in my shoes. I clearly interpret some of these cliches differently than some special needs parents. Or perhaps it is just that non-conforming voice in my brain for accepting anecdotal sayings for ways of accepting or coping. To say, "Our days are over-whelming but at the end of the day I would not have it any other way", (for me) would be just simply absurd. I would have things a hundred different ways. If there was any thing that I could do, any thing that I could say, any thing that I could give, in order to take any bit of struggle away from Jenna, I would. This is a cliche that leaves me confused and disgusted. IT is not a matter of "all or nothing". It is not a matter of choosing to or not to be a parent just because there is a disability to navigate. Again, the disability does not define our lives. It tries. Dam, does it try..... It is not a matter of choosing to be a mother of a child who has a disability or being without that child. It is a matter of, if faced with the power to change things in order to improve your child's well-being, would you do everything humanly possible? Absolutely. I would "have it" so that Jenna does not experience sensory storms. I would "have it" so that she does not have to struggle with frustration of understanding so much language yet not able to express nearly as much in return. I would "have it" so that her spatial awareness and body awareness came first nature. I would "have it" so that she could sustain friendships with peers. I would "have it" so that others would not run off at her absence of speech. I would "have it" so that her nervous system worked more efficiently, allowing her to live her childhood without anxiety or uncertainty. Like I said, I would "have it" a hundred or more ways that I could speak on and on about. All children should live without fear, without worry and without physiological challenge. For me, there is nothing about Jenna's disability that I deem a blessing. Not for her. Not for Jason or Blake. Not for me. I feel much anger and resentment towards her disability for its role in robbing my sweet-hearted, curious, fun-loving, and intelligent daughter. It has robbed her of so many things. It has robbed her of a deeper and closer relationship with her twin brother. It has robbed Blake. It has robbed Jason. It has robbed me. It continues to do so in a contingent manner. For me, her disability causes Jenna and our family much stress, anxiety, and feeling of helplessness. Although we have many tools to combat these things and that our will is stronger than that of the disability, it is tough. It is unfair. It is most certainly not a blessing. Our hope and determination are the blessings. I do not use the word hate very often but in the case of describing how I feel towards the struggle caused, I HATE Jenna's disability. She should not have to struggle to gain body awareness and confidence to navigate the world. She should not have to fight for others to understand her. The world should not be a frightening place. She should not have to experience the frustration of knowing what she wants to do but having her own nervous system often times serve as a road block. I hate the fact that Jenna experienced a grade three bilateral intraventricular hemorrhage. I hate the pain and damage that her early birth caused her. No, I cannot say that her disability is a blessing because she is much of who she is due to it. Not at all. Jenna is Jenna because she is who she is. Jenna is Jenna...born blessed with a sweet nature. Born with a spunk that knows no end. Jenna was born with the same traits she would have been born with had she been born sixteen weeks later at full-term. Jenna is who she is with or without her disability. You see, even though her disability plays a huge role in her journey and has a very bold existence in her days and nights, it is not part of who she is. To say that it is would be a fabrication of her identity. It does not define who she is. Nor does it govern which paths she will take in life. It is her nature that will do the governing. It is of her free will, her strengths and weaknesses, her desires that make up who she is. She decides how to navigate her struggles even when the pathways are seemingly blocked. It is not her disability that navigates those paths. She is in charge......ultimately, she is in charge. This disability does not, nor will it be, recognized as a blessing. SHE and all that makes her her, is the blessing. For that, I will be eternally grateful.

Tuesday, June 23, 2015


Today was such a busy day for Jenna, in which she chose to start at 6:50AM.....even after having gone to bed late lastnight. We went back to DC yesterday evening in order to see some of the sites at night. Again, she did an amazing amount of walking. We figured she would sleep until at least 8:30 or 9. Nope. She very joyfully ran into our room and jumped on the bed at 6:50 ready to start the day. Therapy did not start until 11 so we had quite a bit of time to fill before heading to the center. Jenna and I hung out together on the couch for a bit but then she requested going out to her pool. She has been even more verbal since our trip and is using language/verbalization as a primary way of communicating now. Whereas before, she would rely more heavily on nonverbal communication and body language. When we got out to the pool, she quickly realized that the water was a bit chilly for her liking. She tried getting me to hop in so she could stay warmer on my lap. Anyone who knows me well though, knows that I am not a fan of anything cold unless it is served in a glass. So I tried to appease her by suggesting she jump in the bathtub but she was not interested. She settled for a nice mommy and Jenna walk around the neighborhood. We played at the park for a bit and took a long stroll until it was time to get back and start getting ready for therapy. Today, Jenna had OT with Lindsay and Vision Therapy with John. Every day, Jason and I are learning so much about how to incorporate the floortime model into our day to day lives. I am on board 100% with the model as a system in which will help Jenna develop who she is. I love the fact that it allows us to address where she is at and not what any diagnosis, statistic, opinion or book suggests. It builds on her abilities and challenges her to move further. The approach is a very warm and relationship-based approach that will strengthen our connection with her, allow her to become spontaneous, foster her curiosity and expand those interactions that she already seeks out. They say hindsight is 50/50 and that is definitely an understatement for me in regards to my back and forth interactions with Jenna (and others). I refuse (do you hear me trying to convince myself here?) dwell on and to beat myself up over the "I should have", I should not have" and all of the mistakes that I have made up to this point in Jenna's communication attempts. I have learned that I have done some things "right on", many of them stemming from listening to my gut and knowing Jenna the way I do. I have realized that I have made some mistakes due to lack of knowledge, at times lack of patience or lack of just simply slowing down. Jenna has always been so very capable of tasks, even the ones that she has to work harder that the "average" child does. Unfortunately, and like all moms from time to time, making the decision to do something for my child because it is either 1-just easier to do it myself, 2-time consuming on those rush here-do-that-rush-there days, or 3-giving in too quickly to some protest on her part. Not only is Jenna very capable of doing lots of things I have not held her accountable for, she is also wise in knowing that mommy does this. She has well-played a many a situation. It is true and VERY real, that that premie momma's quilt and over-protection tenancy is sometimes justified. Since I have seen my newborn premature baby experience pain, discomfort and life-altering medical incidents and the after effects, I have every right to be over-protective. I will not deny myself that from time to time. The guilt comes into play in that I watched her experience so much in her first months of life and saw how hard life was for her during days in which she should have been developing, warm, growing strong while in-utero and since I was not able to physically protect her and provide her fully with what she needed, I will do what I can to make her life continue as smoothly as possible. Of course though, the momma guilt tends to get carried away when giving grace for things. This is where I have made numerous mistakes. This is ok though, because these things are mend-able. The things I feel worse about though is not recognizing sooner, some of the subtleties of communication attempts she had when she was younger. I did not miss them all of course, but there were times when I could have extended that non-verbal communication in a way that would allow her the opportunity to grow. Simply put, I missed some great opportunities. No, it of course was not intentional. No, it was not a knowing choice I made. It was the not-knowing. No matter how rational and realistic I am about this, it still hurts.....missing that important moment where I could have provided her a better platform for gaining more foothold on language development. Especially since this is a huge area of challenge. I know I have to forgive myself or at the very least, allow myself some grace. You learn from your mistakes and from your experiences and use that knowledge to grow. I know that I strive to do the best for both Blake and Jenna, and know that I have since before they were born. That will certainly not change. There are so many things to journal about and every thing can branch out into so many OTHER things to journal about. That tends to happen when you gain a lot of knowledge in a little amount of time. I am so excited to learn this system because by using it, we are learning more and more abut our gal....not only from the therapists but best of all by our very own star herself. She is sharing so much of who she is. My mind has now gone into what I call my "ADHD" mode. The emotions that come with all of those topics and the exhaustion that I am feeling, is causing a bit of a traffic jam. Time to shut it down for tonight. So much more to say.....

Sunday, June 21, 2015

Sunday Stroll to Some National Landmarks

Today we went to DC to check out some national landmarks such as the Lincoln Memorial, Washington Memorial, World War II Memorial, the National Mall, Vietnam Veterans Memorial and more. Each landmark brought about a different aura for me. What struck me about the Lincoln Memorial was its "grandness". Jenna seemed pretty impressed by the grandness of it as well. She got pretty excited when we got up to Lincoln's statue and stood by the towering columns. The Washington Monument was also grand and stood so proudly. It is really pretty difficult to resist going up and just running your hand across the beautiful stone (marble, granite and bluestone gneiss). The circle of flags around the monument is quite the sight to see. The World War II Memorial was striking in that it felt to me that it gave an aura of unity. Jenna liked the fountain and was upset that she could not wade in it. We did get some nice pictures though. The National Mall was gorgeous, the walk through the park is a must-do. Finally, the Vietnam Veterans Memorial was a visit that I am glad to have had. It was lined with roses for Father's Day. Walking along, there was a deep sadness yet respect felt. Looking at the wall and seeing your own reflection gave me a feeling of connection, although I do not have a family member (that I am aware of), that was in the Vietnam War, it just makes you feel so grateful. Seeing Jenna put her little nose to the seemingly endless list of fallen soldiers' names and her dainty fingers rubbing the names is an image I will not soon forget. I know Blake will love to see these landmarks one day. I look forward to coming back as a whole family so that he can experience this too. I can hear the comments and questions pouring from his mouth now. :) Jenna did an amazing job today with all of the "tour-esk" demands we put on her-ha! We did A LOT of walking and it was extremely humid. It was a beautifully sunny day and the clouds were simply perfect. We experienced loud traffic whizzing by, hundreds of tourists' voices and conversations throughout the day, there were various scents, there were people to navigate around and crowds to navigate through, there were unexpected sounds and movements by people everywhere we went, there were sirens/ambulances speeding by on a regular basis as we walked from and to the car.....the sensory experience was huge today for our Jenna-bug. She simply amazes us by her adaptable personality, her natural coping skills, her efforts and attempts (and successes) to self-regulate when things get to be too much, her tenacity to keep going, her drive for experiences. The only times that she got upset was when she fell on her tailbone and then every time I tried to get her to look at the camera for a picture. The latter is quite normal for her...she hates having someone point a camera at her. She impressed us with how well she handled all of the walking and moreso, all of the sensory stimulation. She is pretty tired tonight and will likely sleep REAL well (let's hope). We got some great pictures today that I will work on posting.

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.