Words, words, words…

Today especially, I was reminded of how hard it is to have a non-verbal child. All morning, even at music therapy which is usually her favorite, Audrey was fussy and a bit off. I have no idea why. No fever, no cough or runny nose. But something was bothering her. She cried the entire 35 minute drive home for no reason that was obvious to me. As a parent, this is awful to experience. Not knowing what is wrong with your child is heartbreaking and causes so many tears (for mom and child). Going through the list of things that might be wrong is beyond frustrating, especially when you never reach an answer. I have given medicine when I probably didn’t need to, or let her watch tv when it wasn’t necessary because I was out of ideas on what could be wrong and do anything to pacify her. I know all parents do this to some extent but I often hear parents complaining about “their kid that never stops talking.” Although I can understand why this may seem frustrating to parents who don’t no any different, it is without a doubt one of the hardest things for me to hear. What I would give for my kid to talk my ear off in the car, or heck even throw a tantrum and tell me they don’t want something.  

I don’t get to hear “mama” or “I love you” to make up for those frustrating terrible 2 days. 

It is isolating, depressing and heart wrenching to not know what is wrong with your child.  

So please, next time you are complaining about your child’s endless story of their day, them saying a bad word in front of an elderly person or telling their teacher an embarrassing story, remember that some moms (including me) would give up everything to hear their child speak. 

The positive of this however is that I don’t take communication for granted. Every time Audrey attempts communication and is successful, we are truly grateful. 

I don’t expect for others with typical children to fully understand this nor would I wish it upon anyone. I am not wanting pity or sympathy from this post only sharing a perspective. One of the reasons I started this blog was to educate others on my daughter’s diagnosis and shed some light on my parenting journey as a special needs mom. Think before you speak and soak up those words! The next time the grocery store clerk asks your child their name and they answer, smile and remember how lucky you are ❤️

Author: Rachel Alves

Hi there! I am a special needs mom to a beautiful, sweet girl. Audrey has a mutation on her CASK Gene. This is a rare genetic disorder that effects her globally. It has caused a seizure disorder as well as gross motor, fine motor and speech delays. A Microcephaly diagnosis comes along with it as well. Our last 8 years have been filled with therapy, learning about our daughter's disorder and also learning to cope while finding joy. Thank you for taking the time to read about our journey. For more information on the CASK Gene, please visit my Instagram @alvesmomkickingCASK. View all posts by Rachel Alves