Some of the symptoms that made us aware that Ella had something quite severe going on internally was the fact that she could not play on play-ground equipment the same as other kids. Just making her way up the play-equipment steps was a challenge for Ella and if/when she made her way up to the top of the slide, she kept her body low and crouched near the "floor" because of what we thought was a fear of heights. As she'd sit at the top of the slide, she'd debate with herself intensely over whether she was going to go down or not! One minute, she'd gain the confidence and scoot closer to the edge of the slide and the next, she'd start screaming in terror and adamantly refuse to come down. This would go on for five minutes or more until she was rescued by me or another family member and carried down to the safety of the ground. Once "grounded", Ella once again, began begging to go down the slide! We thought this was very unusual!
Other signs that something was not quite right began to appear. (I'll speak in present tense, since these symptoms are all still happening) At dinner, Ella shoves food into her mouth at record speed, even to the point of gagging herself. Around the house, she chews on toys, much like a baby and drools. Since she was a small toddler, Ella would twirl toys in her hands and make interesting noises, not playing with toys in the typical fashion...it was more like, feeding some internal need to touch and feel than create interesting scenarios with her objects.
Her attention span has always been almost non-existent. Upon seeing a new toy or exciting item, it was almost as if Ella would zone out and focus in on that item and only that item in her focus. There was nothing and no one that could distract her until a new interest would catch her attention, which would usually happen within the next few seconds. To get her attention, we would have to enter her line of sight or remove what was interesting her before she could even begin to focus on what we were trying to tell her. In any given environment, Ella is almost always too loud. Even when whispering, it would come out as a "yelling whisper", as if she had no idea how to gauge her volume. When, entering a room, Ella would often smell every object she came in contact with and even lick them. (We thought this was to help her see since her vision is so limited from her previous retinal detachment)
In school, Ella bumps right into the other kids and walks right over them seemingly unaware. She has a noticeable gate, walking haphazardly through a room. At first, we thought she was limping from all of her hip surgeries, but as time passed, the "limp" did not improve and began to baffle her orthopedic surgeon. Ella has always fallen off of chairs and appeared to be very clumsy (all which we blamed on her vision); but once Ella entered school, her bumping turned into aggressively pushing and hitting other kids and sometimes even biting. She began to throw fits and rage uncontrollably, which stunned us even further. One second she would rage and the next, she would compassionately sympathize with the person she had hurt. What was going on??
When we spoke with Ella's pediatrician about the alarming symptoms, she guessed that Ella had some "sensory issues" and referred us to an Occupational Therapist. After the OT had done the initial evaluation on Ella, we were told that Ella suffers from severe sensory processing delays in every single one of her body's senses, scoring an EIGHT (out of ten) in severity in every single category. This includes: vision, hearing, smelling, tasting, touching, proprioception (body awareness) and vestibular (balance)!
Ella would hover near the "ground" of the play equipment not because of a fear of heights, but because her vestibular and proprioceptive senses were not working correctly and made her feel as if she was already falling and in the midst of that sensation, she could not properly gauge how far she was from the ground! No wonder she was terrified!
Ella's frequent impulse to shove food and other items into her mouth uncontrollably and to twist and twirl toys over and over within her hands was not some strange, meaningless habit, but rather an attempt to wake up her body's tactile system and feel something in her very under-sensitive body! This crave to touch is called sensory seeking! It's not until Ella feeds that need that her body can wake up and receive information other than the touch her body is craving.
Her unusual way of shoving, hitting and biting others with no seemingly intent to hurt was not out of a mean-spirit (which we knew...just didn't understand) was to try and create for herself a physical boundary. Her proprioceptors did not work correctly, so she did not understand the space in which she occupied. By inputting pressure into her body through different avenues (hitting, pushing, biting) she was feeding a need within her body to feel and receive sensation and so create and sense the world around her.
Ella's lack of responsiveness to us and others has much to do with her auditory processing disorder. She hears each and every sound around her (fridge, bubbles in a soda, foot steps of others around her, train outside, birds chirping, air conditioner, kid's voices, etc...) and has no idea how to differentiate and listen to one as important and the other as unimportant. Her brain is constantly trying to sort through each sound and determine which sound is an immediate threat, which is important, and which should be ignored. Just focusing in on one person talking is a huge challenge, not to mention comprehending what that person is saying! Needless to say that with Ella, in a sentence, less is more! :)
Ella's visual disorder is much like the auditory one. She has a hard time knowing what visual simuli is important and which is not. She is distracted by everything in her environment! It is amazing...Ella can be walking along just fine and the second she rounds the corner into any type of "busy" visual setting and all of a sudden, you can see her physically go into sensory overload with eyes glazed over and she either gets really antsy and throws fits or you can NOT get her to slow down. She has to "experience" everything in her path.
Falling off of chairs and stumbling were a combination of not being able to adequately feel the chair or floor beneath her (proprioceptive) and lack of functional balance (vestibular). Without the ability to be aware of the space your body occupies and stay in balance with the particular environment has a clumsy and haphazard result. Ella's world is constantly in unpredictable motion!
No wonder she is frustrated and melting down!!!
In class, Ella's teachers are trying to take notice of when Ella is beginning to feel insecure and "out of control". We are using a weighted "hug vest" to help her more effectively sense her body and receive proprioceptive information without having to bump around quite as much. Likewise, at night, she is sleeping with a weighted blanket over her that helps her to sleep more soundly as she senses the weight on her body so that she's not startling awake as she used to. She also carries a "chewy" or chew stick that allows her to feed her tactile (touch sense) needs so that she can better focus on the other things going on around her, such as circle time at school. Everyday, Ella is taken outside to jump, march, yell, run and swing so that her "hungry senses" can be fed in order that when she returns to the classroom, she is more aware and eager to focus and participate in appropriate classroom activities. Studies have shown that kids who have disconnected or inappropriately connected nervous systems are able to organize and improve body function by doing these movement based activities.
Right now, Calvin and I are doing as much research as we can to try and learn more about our little one. I am sure that in a year, I will look back on this post with an even better understanding of why Ella does the things she does.
We are waiting to see if she is accepted into our local developmental preschool and several different therapies. Being just at the beginning of this discovery, we are a bit unsure as to what is next, but we are praying that the Lord will strengthen us in knowledge and wisdom. There is so much comfort in knowing that Jesus is our intercessor and intercedes for us with groans that words cannot express!
We sure appreciate your prayers and words of encouragement as we enter this next phase of life and learning about what this disorder will require. As our lives change once again, we pray that we will keep our hearts and eyes seeking after what God has planned for our girl and how He plans to display His glory through this situation.
Praise honor and glory to Jesus who has saved all of us who have accepted Him as our Savior! And praises to Him for saving our Ella from death and returned her to life - even if it's not like we expected.
"The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express." - Romans 8:26
"If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him." - James 1:5
"Therefore I endure everything for the sake of the elect, that they too may obtain the salvation that is in Christ Jesus, with eternal glory." 2 Timothy 2:10
"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." - 2 Corinthians 12:9
Please keep our Ariana in your prayers as she struggles to understand what is going on with her little sister and tries to patiently communicate with her as sometimes Ella's behaviors are inappropriately taken out on her. And pray that the Lord will fill us with His wisdom and ability to effectively explain all that is happening with Ella to Ariana. Our deepest prayer is that God will help, equip and heal our Ella and that Ariana will be strengthened, gain insight into others and feel unimaginable love through this experience.
Comments