Wednesday, January 15, 2014

Two Steps Forward, Three Steps Back

The team from Early Intervention were concerned that some of Mila's difficulty could be sensory related.  Thankfully they initiated a occupational therapy consult so within a few weeks of beginning PT, we started to link some missing pieces.  I never realized how one little body could be so confused.  Her head bopping (that we love so much) a.k.a, her happy dance, the inability to bear weight through her limbs, fear of being off balance, unfamiliar movements while being held, flinching when things move towards her, the dislike of having her hands or feet held, are a handful of sensory deficits that she has struggled with for a long time.  Mila was completely unaware of where her body was in space, and she compensating by expressing fear when put in those situations.

Maria, her OT, gave us a few techniques to help Mila become aware of her body.  Brushing and joint compression were two key factors that connected Mila's body awareness and ability to bear weight through her limbs in a short amount of time.  Below is a brief explanation from the National Autisim Resources website, of how these two simple techniques, can completely change a child's function.

The Wilbarger Protocol: Helping People Sensitive to Touch

Wilbarger ProtocolThe Wilbarger Protocol is a therapy program designed to reduce sensory or tactile defensiveness. Children who exhibit symptoms of tactile defensiveness are extremely sensitive to touch. This can cause a fear or resistance to being touched, difficulty transitioning between activities, and/or lethargy. The therapy was developed by Patricia Wilbarger, MEd, OTR, FAOTA.

There is not much documented research on the Wilbarger Protocol. However, many parents of children with autism have reported seeing decreases in sensory defensiveness and anxiety as a result of using this technique. Some of the benefits of the Wilbarger Protocol may include improved ability to transition between daily activities, improved attention span, a decreased fear or discomfort of being touched, enhanced coordination, and self-regulation.

The complete routine usually only takes 2-3 minutes.The first step in the therapy involves using a soft, plastic, sensory brush or Therapressure Brush which is run over the child's skin, using very firm pressure; it is like a deep pressure massage. Brushing starts at the arms and works down to the feet. The face, chest, and stomach area are never brushed because these are sensitive areas that can cause adverse reactions.

The brushing therapy is initially recommended every 2 hours while the child is awake. Therapists usually re-assess the level of brushing after two weeks. At that time they may modify the program. The brushing continues as long as the individual benefits from it.

Sensory Toys and Tools
Calming Products
Anger & Anxiety Tools
Swings & Sensory Furniture

After the brushing therapy, therapists may also prescribe gentle joint compressions to the shoulders, elbows, wrists, fingers, hips, knees/ankles, and sternum for a count of ten. Self-administration of joint compression may also be obtained by engaging in jumping-jacks, push-ups, or jumping on a trampoline.

Finally, the therapist may also suggest the Oral Tactile Technique, or OTT. This technique requires a finger to swipe along the inside of the person’s mouth. This is helpful for kids with oral defensiveness. (These children may have trouble with foods because of their texture or hate having their teeth brushed.)

It seemed as we were just getting our feet wet with therapy, Mila decided to go mute.  Granted, she was never really talking before, but her occasional "mama", "dada", and "hoots," seemed to disappear abruptly.  When I say "hoots", Mila literally "hoots" like an owl.  She has since she knew she had a voice!  Even though we thought it was an unusual sound, it was a sound all her own.  A sound we quickly fell in love with.  Oh, how I looked forward to being woken up in the morning or notified after nap time with her sweet voice, hooting, to let me know she was ready to get up.
As if I wasn't on a huge emotional roller coaster already, I didn't know how to absorb her silence.  I didn't want to overreact, but of course my trusty little fingers decided to research autism.  Oh man!  The autism spectrum is so huge!  As I read through the characteristics, I quickly convinced myself that Mila's was autistic.  I could check off 4 out of 6 characteristics that Mila displayed.  What do I do?  How do I approach my speculations?  Could her verbal have taken a backseat because we sent her physical efforts into overdrive? 
I expressed my concerns to her PT.  Sarah suggested seeing a developmental/behavioral pediatrician.  I can't explain how hard it is to be in a new place where you have no contacts.  Michael and I are both in the medical field, and for the first time in a long time, we had no one we could reach out to.  It's a sucky feeling!  She gave me some recommendations and I quickly put my fingers back to work.  I decided to seek a consult with Dr. Annelise Spees.  She has been in the game for almost the same time I've been alive, so she has to have creditable knowledge.  We couldn't get an appointment for six weeks!  Even though six weeks seemed like a century away, we had no other choice but to wait.