Update into year 3

I often question if I would be the same mom with a typical kid… Maybe all the worries and unknowns cause me to feel this way? I know it could be worse, this is not lost on me. We have been so lucky to have a happy little girl. Some days more than others though, I am reminded that this isn’t typical parenting. I would imagine that most moms don’t have to make appointments with caseworkers, therapists and specialists. I would imagine most moms don’t have to worry about researching medications and possible interventions that “may” help. Most moms may be able to take on the normal crazy life stuff because at the end of the day, they most likely will get a full nights sleep, or at least drink a glass of wine before their kid wakes! Don’t get me wrong, things for the most part have been going great with Audrey. She’s relatively healthy, she’s getting stronger and learning every day. I’m feeling more settled and less overwhelmed with our crazy schedule. I love our team of therapists and have met some amazing contacts with even better programs to consider. But man sometimes our reality hits me hard. It’s usually after a particularly rough night of sleep, when in addition to our regular scheduled therapy, we have specialty appointments, equipment device approval letters and forms for me to fill out. Sometimes ordinary life mixed with special needs life is a whirlwind. I’m so fortunate to have a supportive and helpful husband. If I didn’t, I’m sure the days would be much more stressful. This coming month our schedule lightens a bit due to some programs being on summer break. I’m always looking for new opportunities for Audrey to participate in and am hoping to have her take part in another intensive PT session late summer.

Here’s an update on what Audrey has been up to lately:

ABA has been AMAZING! Couldn’t be happier with the decision we made to have this be Audrey’s form of “school” for the time being.

*She’s responding much better with outside sounds, going to the clinic without me 3x a week, starting to follow instructions and understanding “first” and “then” teachings.

*She is making huge progress with PECS and now requesting toys in addition to food.

*Her fine motor skills are improving which is allowing her to use a fork (with pre loaded food) in addition to wanting to try lots of new foods, especially everything mommy has! *

*We recently got on a list for an adaptive tricycle through Nor Cal Trykers and are expected to get the custom bike late summer/early fall.

*Audrey is also working in her gait trainer much more these days which is nice to see.

Sleep unfortunately hasn’t improved but we have recently changed medicines and are playing with dosages to hopefully find success with CBD oil. (Fingers crossed)

I continue to advocate where I can and have recently joined a parent advisory committee for her STEPS program that will start next fall. Hard to always remember that slow progress is better than no progress! Audrey is really maturing these days and her little personality continues to get us through each day! #KickingCask isn’t an easy thing to do but our rockstar does it every day. ❤️

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