Say What?? – Mommy of a Miracle

As a parent to a child with a brain injury, I have heard many comments from a lot of people.  Almost none of them have a child with a brain injury or special needs.  I find that people often speak before thinking.  Here are a few things not to say to a parent of a child with a brain injury or special needs:

  1. “Everything happens for a reason” often said by people who want to provide comfort but have no idea what to say. I completely disagree with this statement. I truly believe that sometimes bad things just happen. In my opinion, there is never a good reason why a child has to suffer.
  2. “She just needs a good whooping” said by onlookers as they watch Isabella having a hard time due to anxiety, sensory overload and dysregulation. Physical punishment isn’t going to help a child cope, adapt or function. Isabella can’t control her emotions, mood, and behavior like we can. Trust me Isabella is more miserable having a meltdown than you are watching it. Please just walk away and say nothing.
  3. “She looks fine” said by anyone who doesn’t know how our life really is. Yes physically Isabella looks fine, however, I can assure you that is not the case. A brain injury is an invisible disability. I would give anything for her to be fine.
  4. “I can’t fix a brain injury” said by a therapist. When I bring my child to therapy, I don’t expect her brain injury to be fixed. However I do expect help to get Isabella closer to functioning in life. Please be kind and just tell me that you do not believe you and my child are a good fit.
  5. “You need to get over it” said by those that are uncomfortable with me discussing brain injuries. A brain injury is not something that you ever get over. It is something that you live with every single day. I talk about brain injuries not so others feel bad or sorry but rather in hopes that I can prevent you or your family from ever having to experience one.
  6. “You should just be grateful that she survived” said by those that don’t understand that therapies last a long time. I am grateful beyond words. That doesn’t mean that I am not going to continue to push Isabella further along in recovery. Settling just because she survived is not an option. Isabella wants so much in life and I want to help her achieve that.
  7. “I will pray for a full recovery” said by others during crisis. When your brain is damaged and forever altered so are you. It is unrealistic to expect someone to be exactly as they were pre brain injury. Pray instead for strength, courage and the will to never give up.

In the end it is better to say nothing than to throw a cliché out there.  If you want to say something to us please be kind.  Tell us that we are doing a great job or that you are praying for us.  If you aren’t sure what to say it is ok.  Truthfully sometimes we aren’t sure what to say either and that is ok.

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication. 


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