August 21, 2014


...Ankle Foot Orthotics

  That is what Sadie was fitted for today.  Ohhh, how I've been dreading these braces.  I don't know why.  Well, I do know why.  But now I don't know if that's really the reason why.  Have I confused you yet?  Cause I have definitely confused myself.
  AFO's are braces that are used to give extra ankle support.  This doesn't sound like it's bad thing, right?  Right.  Except it goes against everything that I have been working with Sadie on.
  Sadie has been in ABM (Anat Baniel Method) therapy since she was 9 mo old.  It is all about movement and freedom and recognizing what muscles do what movements and making nerve connections to the brain that may not be there for one reason or another.  It's about teaching the mind about the body, and the body about the mind.  Sadie has done wonderful with this therapy.  She rolls and twists and is extremely flexible, holds her head up when on her tummy.  She used to be stiff as a board, literally, you pick her up and she didn't bend. Recently she's working on pulling her knees up under her when on her belly (like in the crawling position) and working on sitting up.  I love ABM!  The only thing I don't like is that it is very slow progression.  It takes a long time to get nerve pathways connected.  But it DOES work.
  So when Sadie's physical therapist started talking about bracing her ankles (probably last year in October) and putting her in a stander, I said "No, we aren't bracing her or putting her in a stander".  To my understanding, when you brace a body part or put them in a restrictive environment where there is no movement, it causes no new nerve pathways to form and causing body parts to become stiff.  I don't want this.  We have worked hard to loosen Sadie's body up and create all these nerve pathways, why would I want to take the chance of losing what we have done?  Sadie therapist never pushed or argued.  She brought it up gently and nonchalantly and did A LOT of educating, but I stood my ground and kept saying "no".  That is until... now.
  What made me change my mind?  I honestly don't really know.  I listened to everything the PT had to say, I did a lot of my own research, I talked to other parents about AFO's, I spoke to Sadie's special needs Dr, I prayed to make the right decision for my daughter.  Then one day I was talking to one of my patients (for those that don't know I am an ortho/trauma nurse) about why it was important to wear this AFO brace until their ankle was strong and how it was there to protect and strengthen the ankle and BAM! like a slap in the face it hit me.  I'm a hypocrite.  I tell these people all the time about the importance of the braces, however, I won't allow my daughter to wear them.  Ugh!  What the hey?  What is my problem?  Why am I so willing to help my patients, but not my daughter?
  I went home and thought about my epiphany moment at work.  Why won't I get them for my daughter? I came to the conclusion that it's my own insecurities, I guess. Wearing a brace is an outward sign that something is wrong and that she has special needs.  My secret is I still try to tell myself that she's fine, this all is still a bad dream.  I wonder if I will ever get over that? Probably not, I won't lie.
  So that is how I came to the agreement to get braces for Sadie's ankles.  Don't get me wrong, I still hate the idea of immobilizing her ankles (or her entire body in a stander, but that is for a different post).  I still think that it is extremely important to give her as much freedom and movement and direct contact with objects (such as a foot directly on the floor) as possible.  After I voiced my concerns about constricting her movement and disrupting her nerve pathways that are being formed, I also told them that I am agreeing to get the AFO's. We came to the agreement that she will have them on ONLY when she is in the stander or they are doing weight bearing activities with her.
  Of course her PT was thrilled, I'm trying to be thrilled.  One of the hardest parts of raising any child, but I think especially a special needs child is trying to make the right decisions for them. A typical child there is a "normal" progression and society has pretty much set up what should be done.  You don't have to question your decisions, at least not to great length.  Special needs kids there is no normal. Society is scared of special needs so there is no "plan or natural progression" set up for them.  It's all up to the parents.  Parents of special needs kids already have a ton of guilt, so why not add the pressure to make more decisions for the unknown. I'm hoping and praying that the short time she has them on doesn't regress her fantastic ankle movement that she has gained over the last 3 yrs.  And that these AFO's will only be a positive thing for her and she will start to bear weight through those cute, short little legs.

Miss Sadie is getting fitted for her AFO's.  They put on a "cast" to form a mold for her foot.  I seriously thought she was going to scream and fight the entire experience, but as always Sadie proves me wrong.  She sat there very quietly and patiently, not moving a muscle.  With her arms behind her head, just chillin and watching his every move.  It was really cute to watch. 

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