Spina Bifida Camp

I almost died Tuesday. Okay, I exaggerate a little, but I was so sick I thought I was dying!! My family doctor, better known as Aunt Georgia, seems to think it was a gall bladder attack. I think she might be right since all I had was fever and severe nausea and stomach pain, and it ended just as suddenly as it started.

Dr. Aunt Georgia suggested a bland diet for a couple of days just in case, so I ate Spaghetti for lunch and Chinese for dinner the next day. I'm a little non-compliant, but luckily my own stupidity didn't get the best of me....yet!!

On to more important things:

There have been some questions about how to help your child become more independent, and since that's what I wanted to write about next, here goes (home modifications can wait just a little longer).

The first great experience for Sarah was Spina Bifida Camp (now called Self Help Skills Camp or Independent Living Skills Camp). Every year Easter Seals hosts Camp especially for kids with special abilities. The first time Sarah went, she went for weekend Camp with her Grandmother (I couldn't go because of back trouble). They did everything they do in regular Camp, only Grandmother was there and it was only a weekend, so she wouldn't be overwhelmed her first time. I think she was in Second Grade.

The second time she was about 10 years old. That was the hardest thing in the world for me. Our camp is about 4 hours away, up in the mountains of Virginia. The camp is 11 days long. That was the longest 11 days of my life!!

Camp at 10 yrs old (Notice the bunk beds. Kids on the bottom, Counselors on top!)

I could call and talk to Sarah's counselors whenever I wanted, but they preferred I only talk to her one time. It was for both of our good, as we both cried like babies when we did get to talk.

Sarah saw at Camp how much other kids did for themselves, and she wanted to be independent just like them!! There were lots of fun activities, every day was packed with exciting things to do like canoeing (not a favorite for someone who doesn't like to get wet!!), horseback riding, campfires, camping out under the stars, cooking, talent shows, etc.

Most of the time was spent with the other kids, but for about an hour a day, kids who needed therapy were worked with one on one. They worked with Sarah on dressing herself, fixing meals, cathing (it was before she had her Ileovesicostomy), bathing, you name it, if she needed help with it, they worked on getting her to do it independently. (They worked with the kids all day as a group on these things.)

At night when the kids took showers, the counselors put their Bathing Suits on and got all the way in the showers with the kids, nothing was too hard for them to do. If they needed help, they called other counselors in. Sarah said these were some of the best times, they had so much fun with the trials and errors of bath time!!! There were always Nurses and Therapists around if you needed them. I'm not sure if Drs. were there around the clock or just on call.

Sarah was about 13 or 14 when she went back the next time. It took her a couple of years to get up the nerve again.

They were VERY into Face Painting (Latex-Free of course!)

Singing a duet in the talent show

Sarah loved riding Horses!!

Clowning Around!!

Dancin with a Fella!!

This Face made the Easter Seals of VA Brochure!!

That time she was like an old pro, no crying (on her part), and she had a great time. She learned even more independence the second time, and had a blast!! There are some kids who go to Camp EVERY year, and it's just like their vacation home, they hated to see it end every year!!

Here are a couple of quotes from the Easter Seals Website:

"As counselors and camp staff, you have no idea the impact that your care has. Long after camp is over, my son will talk about camp and share what he has accomplished. He will talk about who he met and what he did. But most important he asks 'Do I ever have to stop foing to Camp Easter Seals?' that shows me that is was excepptioanlly well care for (thank you Lauren from Redbird) and that the atmosphere is the same as when I was there. You have no idea what a profound impact you have had on his first camp expereince! And...I thank you for that!"

Here is what a long time camper said about her experience at camp:

It is the highlight of my every year. It is the only place I can go and feel independant and normal like other kids. It helps me for a week or two our of my life to not be lonely and to feel like I am worth something and part of real life. There is so much to do and so much fun. I get to meet new people and everyone looks past my disability and likes me for who I am.

Click Easter Seals Camp for more information.

You can print the application forms right from the Website.

The only drawback for us is that it is very expensive. And just like everything else, if you make a certain amount of money, there is limited finanical aid available to you. The first year Easter Seals paid part of Sarah's tuition, and my parents and in-laws helped out also. Here again is where contacting Civic or Church Groups for help could benefit you.

Sarah also went to special classes at Children's Hospital for Independent Living. There they also worked on cooking, dressing, personal hygiene, etc. I think it was covered by Insurance as Occupational Therapy?

Of course, the biggest boost she got in Independence came when she went away to school (Woodrow Wilson School for Employment) after graduation from High School.

I'll talk about that next time, I've got to go do dinner dishes now!

Have a great weekend!!!!