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Long and Winding Roads

One of the biggest challenges in my mind for families of children with the ever elusive diagnosis of Global Developmental Delay is what therapies, when, with whom, how long….

Kimberly entered into the “Infant-Toddler Program” in our County at the age of 11 months.  I had never heard of the Child Development Services Agency (CDSA) and it was mentioned to us at a visit to the genetics specialist at UNC-Children’s.  I contacted the CDSA, they came out for a visit and determined that due to Kimberly’s delays related to her physical abilities at that age (not being able to sit up unassisted, never-mind crawling, pulling to stand or cruising) she would be eligible to receive physical therapy weekly.

Ironically enough our next door neighbor through the woods is an amazing physical therapist who works with children.  Although I already knew Caroline she soon became one of my most trusted allies in the quest to help Kimberly be the best she can be.  I can say for certain that Caroline’s support, guidance and often mere presence made this journey much easier for myself and for Brad.  We began working with Kimberly, who by now was about 13 lbs and the hypotonia still seemed to hinder her strength and abilities.

We had been implementing the Elimination Diet and I felt like we were on our way to healing her ever so inflamed gut.  This, I have learned, is an incredibly long and arduous process.  I was hoping that better health would help her be stronger.  Due to a fairly significant pronation of her feet we decided to have her wear orthotics for a period of time each day once she began to stand.

Kimberly's orthotics looked just like this...with Caroline's insight, we implemented a plan of wearing them occasionally to help support proper development of her feet.

Kimberly’s orthotics looked just like this…with Caroline’s insight, we implemented a plan of wearing them occasionally to help support proper development of her feet.

She wowed Caroline, Brad, and me by going from sitting to crawling to pulling to stand in a matter of 6 months.  By the time she was 22 months she could walk unassisted.  This is when we really started to learn that Kimberly would achieve what at times felt impossible….just on her own schedule.

Finally sitting up at about 14 months!

Finally sitting up at about 14 months!

I vividly remember saying to the CDSA agents that the day my baby girl could sit up by herself and play with a toy or when I could hold her on my hip without her falling backwards we were having a PARTY!  It just felt unattainable.  And so began our experience with therapies.

We soon moved into Occupational Therapy, Behavioral Therapy, Speech Therapy (although she was non-verbal at the time).  The OT was centered on her sensory needs, as we quickly learned that Kimberly not only has an amazingly high tolerance for movement (and pain in some cases), she craves the stimulation of her nervous system.  Several new terms came our way at this time, adding to our expanding vocaublary: Proprioceptive system and Vestibular system were the two biggies for me.

The OT would spin Kimberly on a platform so quickly and so many times it made ME dizzy and yet, there was no response from her.  Our challenge was to try to determine her threshold for response…to give her the input.  It was all very fascinating and overwhelming at the same time.  Very quickly though I came to understand that this was incredibly important for Kimberly and Sensory focused OT has been a significant player in trying to unlock the mysteries of Kimberly’s needs to be able to focus, learn and interact effectively.

Kimberly wearing her weighted vest

Kimberly wearing her weighted vest

At one time we had a “therapy room” set up in our bonus room that included a platform swing, a big blow up pool full of balls, and other sensory related toys for her.  Since we have moved that is not currently set up, but as I am writing this I am asking myself WHY NOT?!  Admittedly we go through periods of being overwhelmed and are not as vigilant as we should be.  While I am sure this is natural I am very hard on myself when I realize we are being slack.

A therapist I once saw told me I was trying to do too much and needed to cut myself a break…this is a nearly impossible request of a parent of a child with issues that you truly feel like you can help “fix” or at least lessen the negative impact it may have on their life.

THIS is the curse of the parent of the child with Autism, Aspergers, PDD-NOS, ADHD, and any other developmental or behavioral diagnosis.  Being dumped into this “bucket” of diagnoses leaves us all trying to find our way through the often times overwhelming amounts of (and often conflicting) information, feeling like it is never enough, feeling as though you are being judged for what you are doing as much as not doing…this internal struggle often times rings louder in your ears than the reality that your child lives.  It can send you into a frenzy or paralyze you….often both at different times.  You burn out.  You lose faith. You feel desperate.  Which therapy will work a miracle for my child?  Which ones can we afford without losing our house.  I have had this very conversation with other mothers and it is chilling.

While Kimberly currently receives therapies at school per her Individual Education Plan (IEP) I do not feel it is enough.  Her teacher will tell me, “she does so much better when it is just her and me in the classroom”…etc.  She learns differently, this we know.  We do not have an option of placing her in an environment for school that is one on one, so she must do the best she can with what she is given.  This is maddening for me.  I try to provide our oldest daughter with everything she needs to learn and succeed yet I cannot provide that for Kimberly…

There are days that I marvel at the fact that she is a beginning reader and remind myself that just a year ago this too seemed too much to dream, I have to keep pushing for more from her and for her.  This is and will continue to be a long road, longer than for most and with more twists and turns.  We will get there though, wherever there is.

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  1. You are all so very brave to tackle this story with all of its heart-rending details. I know you will be an inspiration to everyone who reads it, making us all realize how easy it is to take for granted the simple daily functions of our lives. You are so very brave….please keep it up…excuse me while I wipe away my tears. Little Kimberly is a treasure and will be the best she can be, thanks to you and everyone who has been on the long and winding road with her.

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