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Beyond the diagnosis

I will be syndicating the posts from my blog, Tics & Tats, here on TSParentsOnline. If you want to know more about me and my connection to Tourette Syndrome, just click on my name for my bio! Or visit Tics & Tats!

It has been a beautiful warm day in Georgia, and I’m back at Camp Twin Lakes starting to get ready for the season…I can feel now that summer is just around the corner . My summer job is working as the Medical Liaison for Camp Twin Lakes to help support the medical programs for the camps that come to the CTL Will-A-Way site. Today was a family day for one of the local camps to help introduce the children and families to the facility.

The organization that visited today serves children with many different disorders…from cerebral palsy and down syndrome, to autism…they have a very diverse population. Watching all of the different children interact and play with each other is amazing. Towardsthe end of the day the director gave the parents the opportunity to sit together and share their stories with each other…it was heartwarming.

One of the mom’s shared that being a part of this program has taken so much of the stress off of their family as well as their relationships at home. She talked about how wonderful her child is , but how stressful it is when others can’t see beyond his difficulties – at school and out in the community. Sometimes it’s hard to put on that shield that is necessary to survive others perceptions of your child, your parenting, and your life.

What became clear was how important it was for them to feel connected to the people that work with their children. They appreciate people who are willing to look beyond the diagnosis and find that unique child underneath.

Both of these organizations do an amazing job of training and supporting their staff that consists mostly of college students. Watching these young adults help these children climb the rock wall, sail down the zip line, go boating on the lake, and fish…just brings a smile to your face.

What many people don’t realize is how much thought and planning goes in to these fun activities for the children. It’s not just about having fun…which is still a really important part of it…but they make sure that they have appropriate activities that challenge them and broaden their experiences.

Quality after-school programs and camps should be creating “intentional” programming for their special needs children and adults. When the core staff is trained and well prepared…the support staff has the confidence to work with the disorders they are presented with.

Besides the creation of an amazing support network for these families, the staff develops a deeper understanding and appreciation for the children. Some of these college students will be heading in to careers such as special education, physical therapy, occupational therapy, and medicine.

These experiences impact their lives and shape the way they will approach their careers. While the news on TV only shows us the bad stuff…I see really great things happening with our younger generation when it comes to service and empathy. My daughter has been working with both of these organizations for a year now…and it has changed her life.

Within the walls of our homes, we know and experience the joys and struggles that come with our children. Having others love and appreciate them for who they are…not what they have…is comforting. To have our children encouraged and challenged just like other kids brings us joy.

Thank you so much to all of the students and young adults who spend their time lifting our children up by looking beyond the diagnosis…in doing so they lift us all up. Also to the Camp Twin Lakes staff who have been an incredible support and partner to our camp…thank you from the bottom of our hearts.

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