Concealing an Invisible Disorder

Someone recently asked me if I ever try to conceal my daughter’s sensory issues or delays. The simple answer is: no. That said, I don’t make announcements about it either. Her disabilities are invisible. When you look at my daughter, she looks like a typical three year old. She may even smile at you, and if she really likes you, she might call you “Poopie” as if you are old friends. Trust me, it’s a term of endearment.

There are days where we go in and out of stores, museums, and parks and not a single person would ever know that my daughter is delayed or has sensory processing disorder. They may see her singing to a stick and think she is just a quirky three year old, not realizing this is something she obsesses over and has been doing for over a year. They would never guess that at one point in her life, we wondered if she would ever speak. There are days when we are out and stop to have a snack, and my daughter starts rocking against a bench and singing to herself. Passers-by go from smiling to looks of confusion: Why is my daughter rocking? Why am I not stopping her?

There are days where we go through an entire zoo while she sings to a bent stick in her right hand and marches the entire time. Some days, there is no concealing that she does things that most typical three year olds don’t. Other days, her “quirks” are easily dismissed as normal toddler behavior.

My daughter is nearing the 4 year mark, so up to this point there has been no need nor perceived pressure to try and conceal her disorder. If she needs to rock, I let her. If she wants to bounce, she bounces. I have never discouraged her from doing what she needs to do to self-regulate. I have worked with her to make sure she engages in these activities safely, but beyond that, she does what she needs to do and I don’t try to stop her. She has been at the same daycare for over 3 years now, and the teachers and other children don’t think twice when she rocks, bounces, or even bangs her head on her cot at naptime. The headbanging is gentle and rhythmic and was evaluated by her behavior therapist who felt it was safe and should not be discouraged.

Although I don’t hide my daughter’s delays or sensory disorder to people we don’t know, I don’t go around announcing them either. So, who do I tell? I make sure all her doctors and therapists know what is happening with her. I answer the questionnaires about what she can and can’t do with honesty, even when it hurts to know she isn’t where most kids her age are with certain skills. When I enroll her in extracurricular activities I speak with coaches and instructors ahead of time to see if it will be a good fit. I keep family and friends apprised of her regressions as well as the progress she makes. I’m not afraid to brag when she accomplishes something, even if it is something most kids her age have been doing for a year.

As she gets older, her quirks and behaviors might be less accepted. Will I encourage her or attempt to persuade her to do these activities privately? No. If she chose to do them privately, will I discourage her? No. It is probably easier for me to decide on these things now when we aren’t entrenched in the emotions of being bullied or made fun of at school, but my goal is to give her the confidence now to make these decisions for herself in the future, knowing that she will always have my support.

 

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