Summer came and went

I can’t believe my baby is 4.5 years old. How did that happen? I remember when I was a kid my parents would always say that time flies. I never really understood what that meant until I became a parent myself.

The days are long but the years are short.

This summer has definitely been the mentally draining. I went from getting use to a daily two hour break (while Audrey was in preschool) to being back with her every minute. This was especially rough these last three weeks during her intensive therapy. Driving to therapy, watching her struggle in therapy then realizing I still had the rest of the day to occupy her tired body took quite a toll.

Next week we return to our regular schedule. This includes preschool Monday-Friday, ABA therapy Monday-Thursday. STEPS therapy 2x a week and additional OT 2x a month. Wow.

Sometimes I can’t believe how many things I drag Audrey to. Some days it hurts my mama heart. Some days I want to quit. Do I push her too much? What would it be like to have a less busy schedule and only do things she wants to be a part of?

The truth is, although I know she benefits from these programs, sometimes I have to look at the big picture. Is it worth it? Does she get any joy out of this? As Audrey’s number one advocate, it is my job to make these decisions with her best interest at heart.

I’m slowly trying to make accommodations in her schedule that balance out all the “work” with just the right amount of down time/fun.

Like most children, Audrey thrives on routine. I do know that most of the time, it is worth it but sometimes it’s okay to take the day off or even drop a service if it isn’t working out.

We will see how this fall schedule goes and I will adjust accordingly.

Navigating this special needs world is a constant whirlwind but the thing I’m learning to accept is that it’s okay to need a break. Everyone deals with life stress differently. Everyone has hard days or years. You have to do what works for your family. Period.

Audrey thriving is and always will be my priority. But her happiness is number one.

We will continue to #kickCASK this fall as usual. Stay tuned for more Audrey Adventures.

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