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Saturday, June 25, 2011

Sensory Integration Challenge: Life Is Noisy

Here is a typical scenario at our house: Get ready to take Roxie on a walk. Open door. Hear loud leaf blower a few houses down (or even a few blocks down). Roxie immediately starts to fuss or cry and puts her hands over her ears. Go back inside. Close door. Hope we have time to wait until leaf blowing is done to go for a walk and hope no other neighbors decide to do yard work. Grumble about modern lawn equipment.

Having a daughter with sensory integration challenges has made me keenly aware of the prominence of ambient noise in the modern world. A normal brain can learn to ignore the constant background noise we all encounter such as the hum of refrigerators at a grocery store, the rattle of the A/C when it comes on, the sound of a weed eater two blocks away, or the rumbles and squeaks of a school bus driving by. But to kids and adults with sensory processing disorders, these sounds can be not only annoying, but maddening and painful. Roxie often cries actual tears because of the discomfort she feels when she hears a sound that upsets her. Unfortunately she is non-verbal so she cannot explain what is happening inside her head.

But recently a friend enlightened me about what Roxie may be experiencing. She had spoken to her daughter's friend, who has a form of high functioning autism, about his sensory integration challenges. This young man explained to my friend that certain sounds, including the sound of his mother's laugh, set off something in his brain that is akin to the sound of an extremely loud bell ringing inside his head. He says it is so loud and overwhelming that he can't help but cover his ears and desperately try to escape the sound. I figured that Roxie experiences something similar, but it is interesting to hear the problem described by sufferer who is able to elucidate what he feels.

We are working to decrease Roxie's sensitivities to noises that are prominent in everyday life. This is a slow process and complicated by the fact that the sounds that bother Roxie periodically change. A few years ago we had to ban any wrapping paper for birthdays or Christmas at our house because the sound of ripping paper sent her into fits. She has since adjusted to accept the sound of ripping paper so wrapping is back in fashion at the Sprinkle house!

Roxie likes to keep us on our toes. That is for sure!

Sunday, June 19, 2011

Open Door Church Service Is for Disabled Worshipers

Families or friends of people in our community with a disability may be interested in an article in today's Charlotte Observer (see link below) about a monthly Open Door service at Dilworth United Methodist Church. The service is designed especially for members of the community with disabilities. The article describes the service as shorter (45 minutes), interactive, and open to all. We have only brought Roxie into a church for baptisms and a few children's services because we know that it would be hard to keep her quiet at the right times and that the loud organ might upset her. I haven't been to this Open Door service, but would love to take our family some time to have the opportunity to worship together and make connections with others in the community.

Tuesday, June 07, 2011

Summer Strategy

I cannot believe that there are only two more days of school for the CMS kids. Yikes! Summer's relaxed schedule brings some degree of ease into our home on account of not having to be up at 6:30am (or I should say not having to leap out of bed at 6:30 since Roxie will likely wake up around 6:30 anyway-argg), not having to have Roxie ready to leave the house at 7:45 (I am really looking forward to that), and not having to pack lunches every night. But, as a stay-at-home parent of a special needs child, summer break brings a certain degree of stress and exhaustion. Many people have worked all year to help Roxie progress and we want to keep her on that forward moving track during the summer months. But of course Mom needs to keep her sanity, too. Time to strategize!

Enter the CAP workers (i.e. my saving graces). They are patient and devoted women from Easter Seals UCP who provide in-home support services to Roxie when she's not in school by working on her goals, providing care, and providing companionship. Beginning next week a CAP worker comes to our house for 4 to 8 hours a day Monday through Saturday. Seriously I don't know what I would do without this support during the summer months and that is no joke. But there is no getting around that Mom (that's me) is responsible for Roxie for a lot of the time during the summer. Sometimes I don't mind pushing Roxie to work on her goals by putting her in her walker, asking her to use her communication strategies, or making her use her hands to eat our manipulate toys. But I also like to let her just hang out with me, play in her room by herself, listen to music, or watch a DVD. A typical 8 year old would get to do those things so I think Roxie should, too. Not to mention that I am a softy. And I also occasionally get tired of constantly being on task as a special needs Mom. Sometimes it is easier and quicker to feed Roxie myself or put her in front of a movie when I need to unload the dishwasher or check my email. But I am crossing my fingers that with gentle encouragement from Mom and Dad and with the ardent support of the CAP staff that Roxie will also be ready and able when school begins in late August.