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Things I Wish I Hadn’t Said to My Special Needs Daughter Growing Up

Balancing truth, expectation and optimism

As a parent to a 25 year old daughter with special needs, I know the emotional struggles that come along with raising a child who won’t be able to participate in many milestone events as they grow up.

Sarai has neurofibromatosis, which are little tumors on her brain stem.  When she was diagnosed at 3 years old, the doctors said she would probably never read or write, but she did defy that and is able to do both at a very low level.

However, during her upbringing, it was easy to allow future-based statements to roll off my tongue.  I would often say things like, “when you get a car…” or  “when you go to college” or even,  “when you get married,”  not realizing the long-term effect they would on Sarai as she got older.

The truth is, Sarai would never get a driver’s license, let alone a car.  And although she busted through the odds with her learning abilities, she most likely would never attend college.  And yet as her mother, I was telling her she would. 

As parents, I know we want to encourage our children to do more than what the doctors say they can do, but I now realize I was in such denial that I conditioned these things into her mind, only to leave her feeling disappointed in the end.

Now that she’s 25, Sarai says things like, “Mom, you said I’d get married… you said I’d get a brand new car at 16… you said when I go to college and meet new friends.”

Hearing her recount this to me breaks my heart, and only now I realize I should have been more careful with my words.  The doctors told me she would probably never do those things, but I spoke as if I knew better.  

In retrospect, I wish I would have replaced what I said with other things,  such as, “You’re going to inspire people,” or  “You’re going to be a life changer,”  or even,  “You’re going to do great things”.  Because all of those statements would be more realistic, and I can say from my experience, Sarai does do all of those things on a daily basis.

What I’ve learned through this experience is that there needs to be a balance between saying too much and not being optimistic enough.  Our daughter Sarai will never drive a car, but her grandpa always lets her drive his boat, and it makes her feel so important.  There are ways to give our special needs children optimism for their future while also allowing them to experience their own special milestones. And if this balance is struck, then maybe they’ll feel excited and proud instead of disappointment.

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