I always try to look at the bright side of things. Evie's sensory issues are no different. I can easily say that there many positive results from Evie's sensory-seeking tendencies.
First of all, I hate flying. I am extremely susceptible to motion sickness in cars, planes, trains, and on boats. Evie, however, craves the feelings that come from being in motion. We were on a horribly turbulent flight to Chicago one time, so turbulent that even the flight attendant was broadcasting over the speaker-system that he'd "never been on a flight like this before." I was eating Dramamine like it was candy (which, I don't recommend considering how poorly I felt after all was said and done.) There was one particular drop, (I'd consider it more of a plummet than a drop,) which sent my stomach soaring up through the air into the ceiling of the plane, yet I heard Evie say, "Woooo-Let's do that again!"
Another positive spin on Evie's sensory issues is that, because she is sensory-seeking, she's quite easy to entertain. Rather than being nervous about loud music, or amusement parks, or fast amusement park rides, Evie loves them. We take her to all kids of concerts, and outdoor music festivals. She loves the music. For two summers I have gotten us season passes to Noah's Ark Waterpark because the faster she's moving, the calmer she is.
Evie also doesn't process pain the same way that most people do. I think it still "hurts" her, but she doesn't react to all pain the same way. For example, before her third birthday, she had found her way into our kitchen and had pulled up on the oven door. It just so happened that the oven hadn't fully cooled off after our pork roast, so she ended up with horrible burns on one hand. She only cried for about 10 minutes. The rest of the trip to the ER she was calm, as well as the duration of our visit there and her recovery. On another occasion, Evie was stung by a bee, and the site of the sting turned into a staph infection. Her hand was swollen, red and purple, and hot to the touch, but she still used that hand to perform all of her daily tasks like opening doors, and feeding herself. Again, this is another "positive" aspect to Evie's sensory-seeking.
Evie was diagnosed with Sensory Processing Disorder when she was about 4 years old, but the signs were there much earlier than that. The signs weren't fun: banging her head on objects, hitting and biting herself as well as us (her parents), screaming loudly (to feel the vibrations in her chest), pulling her hair out, and jumping up and down (she'd jump so hard that once she broke her toe). We took her to a genetic counselor and he recommended we have some tests run. Those tests came back showing that Evie was sensory-seeking and based on that we were able to get her referred for occupational therapy (OT).
The OT consisted mostly of modulated music therapy and the Wilbarger Protocol Brushing Program. Both of these therapies helped Evie control her sensory needs much better. We also developed a practical "sensory diet" for Evie that would provide her with a better sense of calm and well-being so she didn't feel like she wanted to "jump out of her skin".
In the end, there are obvious difficulties associate with SPD, but I can see that some of the results are blessings in Evie's case. As for me, I continue to put Dramamine on the top of my shopping list whenever we are planning a trip. I close my eyes and picture a "large, open place" so I can avoid thinking about the small, "Tylenol-capsule" shaped mode of transportation in which I am traveling. Evie continues to be a much better traveler than I. The last trip we were on, she took off her headphones and turned off her iPad; she sat back and said, "I'm just going to enjoy the rest of the flight."
Now...why can't I do that?
First of all, I hate flying. I am extremely susceptible to motion sickness in cars, planes, trains, and on boats. Evie, however, craves the feelings that come from being in motion. We were on a horribly turbulent flight to Chicago one time, so turbulent that even the flight attendant was broadcasting over the speaker-system that he'd "never been on a flight like this before." I was eating Dramamine like it was candy (which, I don't recommend considering how poorly I felt after all was said and done.) There was one particular drop, (I'd consider it more of a plummet than a drop,) which sent my stomach soaring up through the air into the ceiling of the plane, yet I heard Evie say, "Woooo-Let's do that again!"
Evie also doesn't process pain the same way that most people do. I think it still "hurts" her, but she doesn't react to all pain the same way. For example, before her third birthday, she had found her way into our kitchen and had pulled up on the oven door. It just so happened that the oven hadn't fully cooled off after our pork roast, so she ended up with horrible burns on one hand. She only cried for about 10 minutes. The rest of the trip to the ER she was calm, as well as the duration of our visit there and her recovery. On another occasion, Evie was stung by a bee, and the site of the sting turned into a staph infection. Her hand was swollen, red and purple, and hot to the touch, but she still used that hand to perform all of her daily tasks like opening doors, and feeding herself. Again, this is another "positive" aspect to Evie's sensory-seeking.
The OT consisted mostly of modulated music therapy and the Wilbarger Protocol Brushing Program. Both of these therapies helped Evie control her sensory needs much better. We also developed a practical "sensory diet" for Evie that would provide her with a better sense of calm and well-being so she didn't feel like she wanted to "jump out of her skin".
Now...why can't I do that?
I loved this Tammy I am so lucky to know your sister so through her I have come to know Evie and you. Thank you for the glimpse into your life.
ReplyDeleteThank you for reading, Mary! I appreciate all the people intersted in learning about Evie and WAGR/11p Deletion Syndrome. Have a Merry Christmas!
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