Parenting Kids with Disabilities: Accepting a Subsequent Diagnosis

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Previously on Summer Blog Series 2017: Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like / Identity / Inclusion vs. Accommodation / Community / Advocacy / Autonomy and Consent / Conclusion

Today's post in the parenting series is written by my sister, Tara.  A couple weeks ago, thinking about posts in the series, it struck me that many parents have kids who receive a subsequent diagnosis.  As I can't speak to that personally, I asked Tara if she wanted to guest post on the subject and she agreed.  Tara also suggests that previous posts in the series will inform and apply to this subject as well.

[Image is: Two silhouettes face to face  with words like Allowing, Warm, Value, and Breathe written on both.]

Dear Parents,

First, let’s take a moment to breathe.

Your child has been given a subsequent diagnosis, and there isn’t a lot of time for intentional breathing.  Or processing.  It’s one more thing.  (Maybe that thing feels like a relief.  Maybe it is traumatic.  Maybe it falls somewhere in between.)  You might feel overwhelmed.  In shock.  Lost.  Alone.

These are natural reactions.  Your reality has shifted, and it takes time to adjust to that.  And time is a luxury, right?  Chances are, you don’t have time at your disposal.  So, take this moment.  Sixty seconds.  And breathe.

I am not a parent.  I do not know what you’re going through.  I am an adult who was diagnosed with Cerebral Palsy as a toddler and a subsequent brain injury as a teenager.

The road to acceptance of a diagnosis can be a long one for both parents and children.  It is my hope that this post might start you and your child down that path.

So, how can you help yourself and your child?

Understand that you and your child will be coming to terms with the diagnosis simultaneously.

Accept that medical stability has to come before emotional processing for both yourself and your child.  Both of you might find yourself processing the diagnosis weeks, months or years later.  This is okay.  Give yourself and your child permission and a safe space to discuss the diagnosis.  (This could be within the home and/or in a professional setting.)

Control your inclination toward pity.

While it is important to empathize with your child regarding the difficulties that come with your child’s diagnosis, control your inclination toward pity.  This includes your tone of voice as well as unnecessary comments or compliments.

Your child’s life post-diagnosis is a new normal.  Struggles and difficulties need to be acknowledged.  Empathize in the same way you might with the most respected person in your life.  Holding your child in genuine high regard will let them know that the diagnosis has not diminished them in your eyes.

Try phrases such as:

“I’m here for you.”

“It makes sense that you’re struggling right now.”

“I would be upset too.”    

The notion of getting better.

Medical stability is always the goal.  However, the notion of getting better can be a tricky one when it comes to accepting a diagnosis.  Some diagnoses can result in a full recovery.  Others are lifelong.

When we speak of getting better, we often mean recovering fully.  More often than not, a child will not get better in that sense.

As such, it is important to frame any  physical, occupational, speech therapy or medical intervention appropriately.  These are meant to improve quality of life.  They most likely will not restore your child to their pre-diagnosis self.  And that is okay.

Touch base with your child on the anniversary of diagnosis day or traumaversary.

This day is significant to both you and your child.  It may symbolize a Before and After.

Saying something like, “Your diagnosis day is coming up - I have been thinking about it more.  Have you?” might open the door for conversation.   Your child may want the day to be as normal as possible.  They may want some sort of acknowledgement or celebration of the day.  It might be a difficult day or week for them.

Their feelings about the day (and yours) may fluctuate throughout the week, on the day itself, or depending on the year.  Treat your child and yourself gently during this time, and follow their lead.

Acknowledge that a subsequent diagnosis may impact your child’s identity.

Your child may tell you that they feel different post-diagnosis.  Being a brain injury survivor impacted my self-esteem and identity.  I felt fundamentally changed after the injury.  I was scared for years that my family and friends did not like or accept the new me because I had such a difficult time liking and accepting myself post-injury.  Reassure your child that feeling different is okay and expected.

“Life is one hell of a thing to happen to a person.” - David Rossi, “Criminal Minds”

Life changes all of us.  You are not the same person you were ten years ago.  Your child’s diagnosis is yet another life change - for them and you.  

“I love you” versus “I still love you.”

Saying the word still implies the word despite:  “I still love you, despite your diagnosis.”


Understand that, acceptance notwithstanding, your child’s diagnosis is an inextricable part of them.  Continue to process the diagnosis, and help your child do the same.  And love them.  Full stop.

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Connect with Tara at tarasays1@gmail.com