Summer ‘26

36 more days with no real plans.  

To some families, that time may feel freeing. Most fill the summer days with friends, beach trips, and staying up way past their bed time. 

Out of routine may look a little chaotic but that’s usually where the memories are made. 

For families like mine though, the days feel so incredibly long. The worry of how to fill the time when your child is limited on where they can go and what their body might be able to do. The lack of support. No fancy vacations or camps that can accommodate. 

The uncomfortable feelings that come with training providers to take care of your growing child. 

Turning down last minute plans because you don’t know how to make it meet the needs of your child. 

Reading the same books,

Driving to the same places.  

Eating out way too often simply because it gives us something to do. 

Summer is hard. Breaks from routine is hard. Being “on” 24/7 is hard. There should be more programs and supports for our children. 

I’m so proud of Audrey and her resilience as always though.  

Baby steps into our pre teen new norm. 

Tolerating going to more places, especially if there is a treat involved 😜

We will make it to August 13th like we always do and continue to search for activities to keep our girl activity and happy. 

#AudreyJo

#KickingCASK

#Summet2026 

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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.

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