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Tuesday, September 13, 2011

Back to School Blues

Since late July I had been counting down the days until school began in eager anticipation of some time to myself, but I have not been able to catch my breath just yet. Roxie started 3rd grade in a SAC room at her new school, Merry Oaks Elementary. McRae started 1st grade at Myers Park Traditional. And Markos FINALLY started last Thursday and is in the 4's and 5's room at Covenant Presbyterian. 3 kids at 3 schools = Lots of time spent in the car and lots of PTAs.

The past weeks can be summed up with the following: Parents = stressed, Kids = Doing fine.

McRae has a substitute teacher until November because her teacher had a baby boy in mid August.

Roxie's teacher is having a baby in the next few days and will be gone until mid December so she will also have a substitute teacher for a good long while.

I hate to be a complaining parent, but I would like to climb up on my pitty-potty for just a moment. Seriously, this just isn't fair. Roxie already had a substitute last year for the first month of school because her teacher at that school was on maternity leave and now both of my girls have teachers on maternity leave. Maybe there is a note in my children's file at CMS that requests that they be given teachers on maternity leave. But because of some challenges that each of our girls are facing, both would do better with continuity and that just won't be able to happen this year.

And to make things worse, there was a sense of disorganization and a lack of communication between the administration and teaching staff at both schools at the beginning of the school year. This may be partly because of the sudden changes the school system made to the budget over the summer along with the fact that the superintendent resigned. I think that the administrations at both schools were scrambling to get things done in time for school to begin and it showed. The teaching staff at both schools didn't have seemingly important information that should have been relayed to them from the administration. (Ex: Roxie's teacher, who is new to Merry Oaks, didn't even know that Merry Oaks is a uniform school so Roxie showed up on day one in a hot pink tank top. And when we went to the open house at McRae's school a few days before school began there was no teacher because of a supposed "HR glitch" and then there was no official substitute hired for McRae's class until a few days in to the year.)

These situations did not make us feel great about the start to the school year. But both girls seem to like their classes and don't seem phased one bit by the situations at hand. This is often the case with kids though. The parents worry and stress about the children's education or life situation and the kids just want more snacks or more play time. And McRae got her wish...she is excited that she gets two recess periods every day this year and Roxie is glad that there is not a child in her class this year that makes sounds that bring her to tears on a daily basis.

As Markos likes to say, "Take a deep breath, Mom."

Friday, August 12, 2011

DC charter school organized around inclusion

More social entrepreneurs, schools, and school systems need to move in this direction. Where can one find a school like this in North Carolina?!

Saturday, August 06, 2011

Roxie at the pool

Roxie loves water. She loves the pool, probably because it gives her so much more control over her body. She's carrying a lot less weight, can walk around without support, and feel some freedom. Here's a good illustration of that!

Thursday, July 28, 2011

Vacation with Abridged Family

Sometimes when a family member has severe challenges, bringing them everywhere the family goes becomes difficult, stressful, and even unpleasant. But in our case we also feel uneasy about leaving out our daughter, Roxie, too regularly. Not taking her to the roller rink or to the farmers market isn't really a big deal as I don't hesitate to leave Roxie with her CAP worker for a few hours at a time. But when we discussed going to Baldhead Island over the summer with a group of friends, the subject of how to make such a trip with Roxie along quickly came up. We weren't able to have a CAP worker come with us on this trip, which would have solved some of the issues related to the necessary constant supervision that Roxie requires. But also because of the nature of the trip, we knew Roxie would have trouble. The island is only accessible by boat, and Roxie really, really hates riding on boats because of the motor's sound. So the trip would begin with 45 minutes of screaming, crying, thrashing, and stress. Then there was the issue that golf carts are used to get around and that Roxie wouldn't understand how to stay safe so we'd have to try to hold her down on the ride and hope she didn't slip out of our hands. Also, as most beach houses, the living area is on the second floor, so we would need to watch Roxie carefully to be sure she didn't fall down the stairs. For optimal sleeping conditions, Roxie requires her own quiet room, but she probably would have had to sleep on the floor next to our bed and we would have prayed that she would sleep through the night with us in the room with her because dealing with her challenges with sleep deprivation is not fun. And the challenge of brining all of her supplies on a boat was something I hadn't even thought of until I was packing up for the trip, but would have been challenging and cumbersome. She has many necessary items on a daily basis that are readily available and would have to be brought along. But luckily we had decided the month before the trip to leave Roxie behind in Charlotte with my Mom and Dad for the week long vacation to Baldhead Island.

I feel like I am making excuses and still feel some guilt that we didn't bring Roxie along last week, but it did make the trip more relaxing for sure. And yes, we did have a blast. In addition to the reasons previously mentioned, part of the motivation to leave Roxie at home was likely that daily living with her is tiring and having her away from home and at the beach in particular is even more tiring. As a friend puts it, "A beach trip with kids isn't a vacation, it is a relocation." This is particularly true with Roxie and likely always will be true. As our other kids grow the have obtained some abilities to do some things for themselves and we can only hope this independence will continue to blossom. But with Roxie on vacation, it is like having a giant one or two year old who requires total care.

We missed her very much, but were able to enjoy some time as parents without the additional stress created by Roxie's disease. The trip also made me realize how lucky we are to have a set of grandparents with a beach house, where we typically go to the beach during the summer. Not because of all the money that saves us (although that is nice), but because the house is stocked with many of the special items Roxie requires (including an elevator) and because we have extra hands from grandparents.

Wednesday, July 13, 2011

Don't Be Jealous: We Saw the Wiggles Live

Tonight we took the entire family and Roxie's long time CAP worker to see the Wiggles (AKA Australia's top earning entertainers 4 years in a row). Some of you are wondering who in the world The Wiggles are and others are making the gag me with a spoon gesture. Our family's interest in the Wiggles began when we noticed about 4 years ago that Roxie was captivated by the Wiggles in a way we had never seen. Up to that point she was not very interested in watching TV or DVDs other than the occasional Baby Einstein DVD. But Roxie would enthusiastically sit and watch the Wiggles, while bouncing happily and chanting along to the music, often in perfect rhythm. To this day she loves watching Wiggles' videos and prefers The Wiggles to any other sort of movie or television program. Most likely the Wiggles' intoxicating draw for Roxie and millions of young children world-wide is the catchy music (I will most likely wake up singing Wiggles in the morning), the bright colors, and enthusiasm of the Wiggles themselves (yes they are 4 Australian men dressed in what looks somewhat like a colorful Star Trek outfit, acting silly, and singing children's songs with the help of a crazy pirate, a dancing dinosaur, and an octopus).

Tonight's show was at Time Warner Arena and we never know how Roxie will do in an auditorium type setting. Luckily she was happy for the first two thirds of the show, laughing, bouncing, and chanting along. But by the last third Roxie decided she had enough and started crying, kicking, and throwing her head. We don't know if she was having sensory overload or was tired or maybe a combination. Roxie's CAP worker took her out to the hallway, but she never was able to calm down enough to watch the rest of the show. I think Roxie had a good time before the meltdown and I am glad we all went. It was particularly neat to go to a show that all of our kids were excited to see. I know that this will not happen much longer as McRae and Markos get older. In fact today one of McRae's friend's told her that she thought that The Wiggles are for babies. I was proud of McRae for standing her ground as she responded to her friend that she likes The Wiggles and was excited to see them. I love that she does not yet crumble when confronted by peer pressure and I pray that she will always be that way. McRae and her brother had fun dancing and singing at the show. I think they will always be willing to do things that Roxie likes even as their interests change because the love her very much and are generally sweet kids.

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.

Friday, May 20, 2011

School Placement for Roxie

About 4 weeks ago we began discussing the possibility that Roxie may do better or just as well outside of her current school, Metro, which is a separate public school for children with severe special needs. Next week we are meeting with representatives from the EC office at CMS to find out if they agree that Roxie has progressed enough to go to a typical elementary school in the fall. She would be in a separate SAC room with only children with special needs and she would still receive services for PT, OT, and speech. But she would spend some amount of time every day among typically developing kids (during lunch, music, art, PE, recess, etc.). And she would relish that time! Roxie loves spending time with other kids, especially ones that can interact with her. Currently only one of the children in her class at Metro is able to interact playfully with Roxie. But we know from watching her at home that when her siblings or her cousins play with her she lights up. Unfortunately Roxie could not go to school with her sister, as there are no SAC rooms at this school. Not only that, but there are only a handful of schools with these SAC rooms for special needs kids and because of all the budget upheaval at CMS I am not even sure where these rooms will be located in the fall. We hope to hear in the next few weeks from CMS regarding their decision.

When I think of moving Roxie to another school I feel some excitement, but I also have many reservations.

Will there be enough staff in the SAC classroom (currently she is in a room with 5 kids and 3 teacher)?

Will the sensory issues she has experienced this year at school be any better at another school? (Currently some of the non-verbal kids in her class make noises throughout the day that make Roxie extremely upset. She often has to leave the room in tears. She experiences anxiety about going to school everyday because of this.)

Will the school be 30 minutes away and begin at 7:30? (Roxie sometimes isn't away until 7:00 because of sleep issues and she still requires total care in the morning to get ready for school. We make her breakfast, feed her, give her medicine, put her on the potty, dress her, and pack her lunch and back pack. So how can we get her out the door by 7 ?)

Will Roxie be successful in another school? (She is a tough nut to crack and requires dedicated and creative teachers and therapists to understand how she learns and is motivated.)

If a typical school doesn't work out for Roxie will she be able to get back into Metro? (I know that it is jam packed at the moment and CMS will quickly fill her spot if she leaves.)

If CMS does insist that Roxie remain at Metro we are going to do our best to request that she is moved into an Autistic class and hope that she will have an easier time with her sensory challenges in this setting.

As I talk with parents about moving Roxie or leaving her at Metro some are pro-integration and say that moving her to a typical school is definitely the best answer and other say that Roxie will never have her needs met outside of Metro. And some parents, like myself, are thankful that we do have options for these special kids. I just hope we make the right choice for our sweet Roxie as she moves to 3rd grade.

Sunday, January 23, 2011

Roxie on a rocket

Spent the weekend at the mountain house; 3-4 inches of snow covered the ground, temps in the 20's, and the sledding was perfect. Here's a video of Roxie sledding down a VERY steep hill with me. She chuckled all the way down and laughed heartily afterward!