Dear Parents Whose Baby Has Just Been Diagnosed With CP

737 words

6 minute read

Dear Parents,

Chances are, you are still adjusting to this.  Your baby was just diagnosed with CP.  Maybe you had an idea of what that was already, or maybe you had no clue, and were frightened by the doctor's words.  By what they could mean for your child, and their future.

You've heard enough medical jargon, and I don't know a lot of medical jargon, so you won't find that here.  What you will find (I hope) is a sense of reassurance.  That's because I'm an adult with CP...and once upon a time, my mom heard this diagnosis.  Twice.  For me and my twin sister.  Back then, there were no resources for families like ours, and my mom was very young.

She still made it work.

That's how I know you can, too.  Because you have tons of resources.  I hope this letter will be one.  Know that it does not come from a place of judgment, but one of love.  Know that I want the best for your baby.

Here are some things you should know:

1.  You Have an Awesome Baby:

CP does not make your baby one-dimensional, or a monster.  CP is not a punishment because you did something or didn't do something.  Sometimes, things just happen.  Your baby is still your baby, and your baby needs you.  They need your love and your acceptance.  So, hold them.  Read to them.  Talk to them.  Bond with them.  Your baby will feel secure with you, and you will feel even closer to you baby.

2.  Connect to Adults with CP:

While it may be second-nature to do a Google search when you get home, and quickly network to find other parents of kids with CP, don't forget about the amazing resource adults with CP can be.  You absolutely need the love and support of other parents who are on the same road with you, but connecting with adults who have CP can be a life-changer for your baby.  We know what it feels like to have CP, physically and emotionally.  We can suggest adaptations that worked for us that will make life easier for your baby as they grow.  Don't be afraid to ask questions.

3.  Know That CP Effects More Than Our Muscles:

Be aware of the subtler things that you may start noticing as your baby gets bigger.  Educate yourself on things like place blindness and startle reflex, struggles with depth perception, and even mathematics.  All of these might be things your baby will deal with as a result of CP.

4.  Start Becoming Aware of Your Own Biases and Ableism:

One of the best things that you can do as the parent of a child with CP is to start recognizing your own prejudices surrounding disability.  This may be new for you.  You may not have given the subject a lot of thought before, but the time is now to start thinking about it.  If you have a healthy view of disability, of adaptive equipment, of your child's body and what it can do, that will be the most valuable thing you can pass onto your child.

5.  Presume Competence:

Speak to your baby, your toddler, your child, the same way you would to a typical child of the same age.  Baby voices are okay for babies, but when you start expecting your typical baby to listen when you say no, for example, expect the same of your toddler with CP,  While developmental milestones may lag, or come to pass in a different way than you were expecting, you can teach your child to behave themselves.

[Image is: Tara and me sitting side by side in an easy chair, around the time we were diagnosed.  We are smiling]

Know that your baby will have an amazing life.  Know that whatever caused the diagnosis, CP will be the only reality your baby knows.  Contrary to that being a tragedy, it will likely feel as normal to them, as being able-bodied feels to you.

We are not mistakes.

We don't blame you.

We love you.

Resources (A Place to Start)

How and When to Talk to Your Kids About Their Disability (video)

What You Need to Know About Cerebral Palsy From Adults with CP (video)

Parenting Kids with CP (a blog post series)

All About CP and Me (free eBook)

We Belong (a middle grade novel)

Growing Up With a Disability: The Early Years (Ellen Stumbo)

Growing Up With a Disability (video interview with Ellen Stumbo)

What Is Ableism? (Ellen Stumbo)

CP and Therapy (a blog post series)

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