We work. We succeed. We cheer! And then…new behaviors pop up. Or old behaviors reemerge.

Just when you think the oral fixation is a thing of the past it returns with a vengeance. Yep, that’s my kid right there…licking the stairs!

Thought you’d conquered that auditory defensiveness? Joke’s on you. Now he can’t watch a show without his hands covering his ears. …continue reading

My first experience with  my daughter’s SPD was when she was hours old. A doctor came into my hospital room to tell me she was being kept for observation because she turned blue and her heart rate dropped. When I was finally allowed into the nursery to see her, I asked the nurses what happened. I was told that my daughter was put under a bright light for a diaper change and, when they wiped her with a cold baby wipe, the episode began.  And at this point, judgements about her behavior began when the nurse said, “This kid has some temper.. You’re going to have your hands full!”

Throughout infancy, people would ask “is she a good baby?” and the answer was yes, but with conditions. She was a great sleeper but only if she was swaddled, had a sound machine going and if the room was blacked out from any natural light coming in. As she approached her first birthday , she became the child who screamed at parties when “Happy Birthday” was sung or when I dressed her in anything other than cotton. By age two, we noticed an extreme emotional sensitivity like breaking out into hysterics when she thought the cartoon characters on TV were sad or angry at each other. She didn’t like swings or carousel rides, she constantly put objects in her mouth that didn’t belong. When I would mention her sensitivities to people I’d be met with comments like “she’ll grow out of it” but I knew in my gut that all these quirks meant something more.

As she celebrated her third birthday, the meltdowns increased and the sensitivities to her environment became more pronounced. They began to interfere with daily life and made things like a trip to the grocery store extremely stressful. She became more verbal about things she didn’t like and I started to understand that she simply couldn’t tolerate the environment around her. When I approached the teacher of her nursery class, she mentioned daily meltdowns over transitions or “not getting her way” and when I asked her how  these episodes were handled I was told they just ignored her.  When I told the school I was  finally having her evaluated, I was told by the school’s director that her behavior was “typical of a spoiled only child” and that she was lacking discipline at home. I was asked politely to remove her from two dance classes because of her hyperactivity, inability to follow directions, and her crying.

I spent the last year meeting with our district who at first told me that her “issues were not their responsibility”  At four years old, she is finally starting to get the help she needs to navigate through the challenges her environment presents to her. She is able to tell us when she needs to be removed from a situation because of loud noise or strange smells. She is getting OT and SEIT services through our district who have finally realized that this is something beyond her control and that, as bright as she is, it is interfering with her education. She is in tap and ballet class with a wonderful teacher and she even danced on stage in a recital last year. She is sweet, funny, and compassionate. She has tons of friends.  Yes, she has been misjudged and yes, my husband and I have been blamed for her difficulties. People ask me if that makes me mad and honestly the answer is no. Even as a special education teacher, my knowledge of SPD was limited before my daughter was born.

These instances won’t be the last time she is viewed as “spoiled” or “difficult” and it certainly won’t be the last time our parenting is questioned. Having SPD may be an obstacle for this extraordinary little girl but it does not define who she is. Her awareness of her limitations is far more mature than her four years and it is because of that awareness that she will continue to overcome this obstacle. She is truly SENSATIONAL in every sense of the word!