By Chanda Alicea
Mom-vocate: The position no one told me about when I became a parent
I’m a mom. Becoming a mom was not something I ever planned, but it was a position I was made for. So, becoming a mom-vocate seems like a logical step I would take, but it was something I didn’t know was going to be a thing in my life until it was a thing in my life (I hope that makes sense).
Here’s the story on how I became a mom-vocate. Not long after my daughter turned 5, she had a little tumble in a music class, which isn’t a huge deal, but it was a simple thing that turned our lives upside down. Upon getting back up, music came out from a portable speaker that she was standing right in front of, and my baby who was already a little bit sensitive to sound was SCARED TO DEATH and ready to bolt out of a class that we normally attend taught by a close family friend. The next few months were the hardest I had ever faced. As a mom, there is nothing more heartbreaking than seeing your child struggle. There is nothing more painful than seeing how terrified your kid is of things we all take for granted and encounter on a daily basis. There is nothing more frustrating than feeling alone, helpless and overwhelmed when you are trying to figure out what to do but don’t know what is really going on.
All kinds of things go through your mind like “Is it a phase?” “Am I making a big deal out of nothing?” “Do I call a therapist?” “Will my insurance cover whatever the issue is?” “Where do I take her?” You know, just all the general things you think of when medical type issues come into play in our lives. So, after advice and referrals for several specialists given to me by friends, I weighed all my options and contacted our pediatrician first. I explained the situation and the ripple effect it had on our lives (we basically became hermits and couldn’t take her anywhere which was a huge change, because my kid LIVED for going to the grocery store, Target, Toys R Us and the like. I mean what 5-year-old doesn’t?)
The response I got was disheartening. I was told that it was a behavioral issue and they don’t handle those. Enter Princess Leia “WHAT?!” gif here! I know you all know which one I’m talking about!
Did I express my outrage and frustration like I wanted to? No. As much as we all want to scream and yell sometimes, A) It’s unnecessary and uncivilized & B) Yelling never gets you anywhere, and quite frankly it’s rude and that’s not how I roll. Besides, what good would it have done me to express my disdain for what I feel is a stupid policy? It wouldn’t change anything. I was left to find a solution on my own, like we sometimes are for a medical problem and I did the only thing I could think of. I GTS’d it. That’s right, I “Googled that stuff” and found a place we could go to have our daughter evaluated. I felt so much relief and anxiety at the same time, due to the waiting time we had before an actual appointment.
Waiting…seems like no big deal right? Of course. Except it was a big deal. We had a pre-planned vacation to Disney World we were taking before her appointment. It was a vacation that tested my patience as a parent like never before. It was wrought with tears (from both me and my daughter), tantrums (beyond the normal meltdowns that come with kids on vacation), refusal to use the bathroom due to fears of automatic toilets (it’s a thing people), sickness (I caught a cold), as well as having to avoid our hotel lobby because of the music that was playing loudly when we came in and if you have ever witnessed a kid experience any kind of incident that traumatizes them, it sticks in their mind FOR A LONG TIME!!
But for all the downs, we were at Disney World, so there were good times as well. Plenty of adorable and ridiculous happy moments. Plenty of times where I saw my daughter relax and enjoy herself at meet and greets with all kinds of Disney characters. All of these things that balanced out the tough time that we had on that trip. It was definitely the best/worst family vacation ever.
We got back home and FINALLY got into that appointment, where she was evaluated and diagnosed. My daughter is not on the spectrum but has Sensory Processing Disorder with sound along with some other areas that we have focused on over the last 2 years. In addition to being her biggest advocate, I’m also her biggest cheerleader. I cheer on the things that seem so simple to others but are major victories and accomplishments in our house. I educate without offense when people I know who ask me about her situation so they can better understand our situation.
Here are the most important pieces of advice I can pass on:
- Never be afraid to advocate for your kid. Clearly you can see that your doctors DON’T always have the answers.
- You would be surprised how many people can relate to you. I know sometimes that it can be terrifying to come out and talk about things like this, but once I started documenting our journey with SPD, I found so many people who were in similar situations. It definitely helps to have someone understand what you are going through.
- Always remember that you are not alone!