My youngest daughter is 16 years old and a sophomore in high school. She is autistic and is also diagnosed with sensory processing disorder and anxiety.
I keep getting all the exciting emails from my daughter’s high school that it’s “time for”:
- Time for your student to pick classes for next year.
- Time for spring sports tryouts, come be a part of the team.
- Time for prom season, tickets go on sale soon… Did you get your tux or dress?
- Time for your student to get a summer job. Parks and Rec wants to hire teenagers for the summer.
- Time for your student to start thinking about college or trade school after high school graduation.
These are happy, exciting emails parents of typical teens get at this time every year.
However, “time for” a severely developmentally disabled teen looks a bit different. “Time for” us looks more like…
- Time for me to set her goals with the school and collect all the data to see if she needs an extended school year. We don’t want her to lose any of the critical care goal progress she has made during this school year while on summer break.
- Time for us to find sensory activities that will keep her regulated, active, and engaged this summer. She doesn’t have friends like a typical teen, so I do my best to keep her happy.
- Time for us to find another new at-home occupational therapist, as we can’t seem to find the right fit or one who wants to work with teenagers with significant needs.
- Time for us to start looking into getting legal guardianship over my daughter when she turns 18, as she will not be able to care for herself, and she will forever be in my care.
I try not to dwell on what she cannot do or constantly worry that she is different. I try to stay present and focused on teaching her and meeting her where she is. I truly marvel at how far she has progressed over the years.
Some days, the “time for” emails feel like continuous punches to the gut as they start coming at me more frequently, sometimes several times per day. Every email is a constant reminder that our journey is off the beaten path.
The truth of the matter is, it sometimes makes me feel a little bit lonely and sad, and I think it’s okay to admit that.
I just can’t stay in those feelings for very long because my daughter needs me to keep moving forward.
It’s time for me to close my email today and focus on our future path together. It’s time for some laughter and light with this extraordinary young lady of mine.
The struggles and the beauty of this life shall forever be intertwined.
Written by Laura Simzyk of Olivia’s Extraordinary Journey
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