Wednesday, October 10, 2012

A Parent's Perspective - Chasing Rainbows

Let's give a warm welcome to Kate, from Chasing Rainbows, where she beautifully chronicles her family's life. Kate is the wonderful mom to Brian, who is almost four(!) and Gavin, who just turned five. Gavin has Cerebral Palsy, Hypotonia, Developmental Delay, and an Undiagnosed Genetic Syndrome, but he continues to impress those in his life with his accomplishments. Take it away, Kate!

Our life in five words:

Positive, peaceful, inspiring, unexpected, roller coaster

Four qualities I look for in a therapist:

  1. A connection with Gavin is one of the most important things to me. If he trusts the therapist...if he or she takes the time to learn his favorite songs...if they are patient and meet Gavin where he is...they will get much more out of him.
  2. Unique ideas. I love a therapist who isn’t afraid to try new things. You just never know what Gavin will respond to - some of his best work has come from a therapist taking a risk and trying something new!
  3. That they push him more than I do. I would never have thought that Gavin would have held a marker and used a “Spin and Draw”. I was never so happy to be wrong.
  4. Communication. For the last five years, Gavin has received ALL of his services in my home. I never missed a thing! This year, he started school and his therapists see him there. It’s so important to me to hear from them about how he’s doing. They write in his communication book that goes back and forth...they email me...we talk on the phone...and I was sure to put “consult” in Gavin’s IEP so we have frequent meetings to discuss his therapy activity, progress and goals.

Three resources I can’t live without:

  1. The internet!! Usually you can find me in bed with my iPad into the wee hours. When I’m not googling therapy tools or toys for Gavin...I’m researching genetic syndromes. Gavin is currently undiagnosed and has undergone extensive genetic testing.
  2. Gavin’s bed. When he outgrew his crib, I started looking for a bed. Regular hospital beds were out of the question...and I didn’t care for the look of some of the other special needs beds. I was THRILLED to find a unique bed made by a Dad for his special needs daughter. It’s called the “Courtney Bed” by Cyr Designs. It’s Gavin’s mattress is the most comfortable one in the house! The netting is illuminated at night by his Twilight Turtle and all four of us have even piled in together to read books. We never have to worry about him falling out of bed or banging his teeth or head on anything.
  3. My blog. Writing each day is the best thing I do for my emotional health. And it has also connected me with other parents who are on a path resembling ours. That blog is so important to me in so many ways.

Two words (or more!) of advice for therapists:

Working with children: Create a "we're in this together as team mates!" atmosphere as opposed to "I am the therapist - you must do what I want". 

Listen to the parents! Often times special needs parents feel out of control with experts and doctors hovering over their shoulder telling them what to do with their child. Try not to pile more on top of that. Create an environment where the parent feels like you are learning from them. Inflate their ego. Trust me - it will go a long way in your relationship!!

A word of advice for the parents of a child newly diagnosed with Cerebral Palsy or an undiagnosed genetic syndrome:

In the beginning you're in the well looking up and it seems like you'll stay down there forever. Let yourself adjust to the the disappointment.  Let yourself grieve and be angry.  Soon you will realize that it wasn't as bad as you thought it would be (things usually aren’t in life!) and your child will open your heart and your mind in a way that you didn't even know was possible.

Keep an open mind. Some of the best therapies and treatments for our child were alternative...and some people thought we were crazy. But no one can argue with the great results we’ve had! Lots of people will have lots of opinions on how you should treat, care for, cure your child - but they aren’t in your home every day. Stay focused on your little one and block out the noise. You are the best parent for your child.

But the best wisdom I can share with you is something my precious son taught me. As much as you spend days and nights and dollars to help your is really your child that was sent to help you. Gavin changed my life in the best possible ways.

One dream for my child:

My biggest and greatest dream is for Gavin to talk.

And finally, what I do to rest and recharge:

My husband and I think it’s very important to get away together. Early on, we worked hard to establish relationships with caregivers and gave them a LOT of time to get to know Gavin and care for him in our home while we were present. We don’t have the luxury of just hiring a babysitter on a whim - like the teenager down the street or a friend’s trusted babysitter. Gavin has too many tricky issues. Knowing that our caregivers know Gavin’s routine, his issues, his likes and dislikes, makes leaving him so much easier. We have been able to go on many weekend trips which has done wonders for our marriage. And our sanity! And sometimes, let’s face it, our kids need a break from us.

Kate, thank you so much for stopping by and sharing your perspective! Readers, head on over to Kate's blog at to see what she and her boys are up to! Not sure where to start? I recommend starting here. I love how she and Ed met!

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