Wednesday, August 29, 2012

A Parent's Perspective - A Life Less Ordinary

Today I have Amy, from A Life Less Ordinary, sharing her perspective on raising a child with special needs. Amy is the mother of two adorable little girls, Vivian, age 3 and Elena, age 7. When Amy's daughter, Elena, was diagnosed with spastic diplegic cerebral palsy, Amy searched the web for information about what to expect, only to discover limited real-life stories. Amy decided to start a blog to share Elena's journey, with the hope of helping other families in a similar situation. Please read on for Amy's words of wisdom.

Our life in five words:

busy, challenging, gratifying, supportive, loving

Four qualities I look for in a therapist:

  1. Goal-oriented (measurable progress)
  2. Child and family centered (works with family life)
  3. Patient
  4. Animated/inventive (makes therapy less of a chore for my child)

Three resources I can't live without:

  1. Our main PT - helped us cope/learn/celebrate life with CP more than I can put into words
  2. OUR NANNY - Annette has been an integral part of E's development. She's been with us since E was a baby - through sign language, sickness, surgeries, therapies, everything!
  3. Learning Tower - helps my kids stay at waist level in the kitchen/at the counter or table, and keeps them from falling
And one more - the internet! Connecting to others, whether it be the disabled community, family, etc, is priceless.

Two words (or more!) of advice for therapists working with children with cerebral palsy:

  1. Topic: realistic lifestyle: Our main PT, especially in the beginning, asked us to change so much of our daily life in order to help Elena. It was daunting, but I'm glad she did it. Part of that process was accepting that E's development was atypical and we had to adjust. There did come a time when there simply was not enough time in the day to try to fit all/different/more exercises. Our PT knows this and understands "that there are only so many hours in a day - and part of the time Elena needs to just be having fun and being a kid."
  2. Topic: reality checks: In the beginning, I had high hopes that our life would "normal out." Our main PT has helped us (immeasurably) understand that E will have challenges throughout her life related to her disability, as well as typical kid troubles. She was patient, kind, non-lecturing, approachable, even when we had disagreements regarding PT, stance, home exercises, etc.

A word of advice for the parents of a child newly diagnosed with cerebral palsy:

I have two:
  1. Enjoy your child. Most (clinical) diagnoses of cerebral palsy happen between 1-2 years of age. Around E's diagnosis, I was initially devastated while my husband kept me grounded. Besides having a name for her condition, nothing else had changed. She was still the same child we loved before the diagnosis. A diagnosis can HELP your child and your family, so having one can be a very good thing.
  2. Find some support other than your spouse/partner/regular confidant. It really helped for me to vent/cry/breakdown with a professional rather than relying on one or two people to listen to me fall apart every day. Having an "outside" person helped me keep my regular support network from overloaded, and I got some advice I might not have received otherwise.

One dream for my child:

I hope Elena sees her disability as one part of herself -  a self that she loves and values. I don't want her to be defined by her disability.

And finally, what I do to rest and recharge:

Oh boy, I wish. I don't do that very often. I like to exercise and play soccer, but on the off-season I tend to be a little lazy. Now that my husband is out of school and home after work more often, I get more opportunities to get a drink with a friend, go to the gym, or go to sleep early, etc. 

Thank you so much, Amy, for sharing your perspective! Please be sure to check out Amy's blog at to follow Elena's journey. Be sure to go way back to the early posts to see how Elena has progressed over the years!

1 comment:

  1. Lovely to find your blog and read this story from Amy.
    I also have a child with cp but Athetoid quad. Many shared emotions from this story.


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