Sleeping Beauty

Sleeping Beauty

This weekend, Piper made a big step towards being more independent.  I am celebrating a big achievement for lil' P.  Part of her Sensory Processing Disorder is being unable to block out all the stimulation so she can fall asleep. She has needed her parents, grandparents, aunts, and cousins to lay next to her so she would feel safe and calm enough to go to sleep. This weekend, she overcame a big hurdle and fell asleep in her bed during nap time. I am hopeful this new routine will continue to help her feel more confident and safe.

Her Sensory Processing Disorder, which is a product of being born 13 1/2 weeks early, is typical for preemies or autistic and asperger kids.  Laboratory studies suggest that the sympathetic and parasympathetic nervous systems are not functioning typically in children with SPD.

When Piper was a baby, she was unable to calm herself, she would not go to many people, she was unable to sleep with noises, woke up easily, and needed help going to sleep (some kids sleep with ear muffs).  The biggest issue I faced was trying to change her diaper.  She would kick and scream when I leaned her back because of her body's inability to feel it's presence in space (proprioceptive system).  She felt like she was falling off a cliff when I leaned her back so her body's response was "fight or flight".  As she got older, she was unable to step off a curb without clinging to me, go down a slide, or swing on a swing set (vestibular system). Piper would jump as a baby when her father or grandfather's would speak (auditory system).

Piper would get over stimulated by any variation of the following activities: the tv, lights, ceiling fan, swing, riding in a car, or if people were walking, moving, or talking.  She cried alot (screaming fits) but a tight swaddle in a quiet room would typically help her calm down.  So The Baby Whisperer book I had read went out the door with lil' P.  It took many books and therapists to teach me about raising a kid with sensory problems.  As part of her therapy, I was asked to do joint compressions and "brushing" every 2 waking hours and expose Piper to new textures, people, places, things, etc.  Being a preemie, she was under 'nursery arrest' and could not leave the home except for doctor appointments.  We had exercises and a special gym I created in our home.  Wilbarger protocol (commonly called "brushing") is a technique using a special plastic brush, with a certain amount of pressure, and moving it in certain directions on the body.  This technique prepared the body for receiving stimulation and was supposed to help Piper remain calm.  The list goes on and on about the many ways we have had to adapt to Piper's sensory disorder.  We all have sensory issues to a degree so Piper will not completely outgrow this disorder.  

She has been in occupational therapy twice and is starting therapy again this week.  Her sensory disorder has gotten worse, to the point it disrupts our daily lives.  For example, she has a hard time brushing her teeth and hair, washing her hair, tolerating the different textures of clothing, etc. (tactile system).  Piper has been unable to get her teeth cleaned because she can not tolerate someone touching her mouth, etc.  She has been to two appointments in six months, each time able to tolerate a little more.  We are hopeful the third visit will finally accomplish the actual teeth cleaning.  Her frequent temper tantrums are another big reason we are seeking therapy.  The therapists say Piper works hard to keep it together all day but when she sees me, she falls apart because I am her safe place.  Being with family and friends is fun but I also know what I face when we leave.  Piper has a great time but completely loses it on the way home from being over stimulated.  

Indeed, it's emotionally and physically draining on me.  I try to remind myself what she feels is worse than the frustration I feel.  Piper needs a rigid routine, more sleep than most kids, and probably a strict parenting style.  I am reading books and in therapy to learn how to parent a strong-willed kid with sensory, OCD, and medical issues. It's hard to know when to be tough and push her, and when to take a step back and try a different approach.  Praying I am able to recognize the Lord's guidance along this journey.  I strive to be the best parent I can be for Piper.  I have worked with her for almost five years so she would not have these problems in grade school.  It can greatly affect her self esteem, how she learns, makes friends, and behaves in school.  I am taking a step back to re-evaluate the situation and make nessessary changes in my parenting style.  I am somewhat laid back, easy-going, and patient with Piper.  Praying the Lord fills my cup with strength to be more resilient and resourceful with Piper.

Peace and Bunny Ears,

Aimee