These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation.
My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.
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Rainbow Camp 2014 - Week Ends Too Fast
Ben may have been asleep in the car minutes before he got to camp, but once he awoke and realized where he was, his excitement was visible. Rainbow Camp is part fun, part spiritual activities, but mostly about forming bonds and friendships with other campers, buddies and counselors. Hugs are abundant at this camp.
This year, during their week of training, the counselors watched as a few of the parents of the campers talked about their child, the best ways to work with their child and finally, what Rainbow Camp means to their family in a video. Below is the video of me speaking about these things. I was lucky to have some help from Ryan, a family friend.
Elizabeth, Ben's former teacher and now our family friend
never misses a chance to give Ben a hug.
Each day, a team of youth counselors create a puppet show for the group.
"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence
Mecklenburg County's Therapeutic Recreation's Amazing Race is Saturday, March 24, 2012. All funds raised go directly to the scholarship fund for summer camp. Summer Camp is 8 weeks long with over 150 children with special needs participating. Last year, over $6,500 was given away in scholarships. In times of budget cuts and loss of resources, Amazing Race is a creative way for the staff to raise money for the children who may need financial assistance attending camp. I will be posting photos from 2011 camp. I am only posting photos that do not show faces of the children, but you will get the idea about how much they enjoy the activities. You don't have to see their smiles, you just have to feel them. The staff have sent me their thoughts on how they feel about camp and I will be posting those as well. Most are trained as recreational therapists and have devoted their life's work to helping children and adults with special needs learn skills, make friends, de...
After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light. He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h...
Ben may have been asleep in the car minutes before he got to camp, but once he awoke and realized where he was, his excitement was visible. Rainbow Camp is part fun, part spiritual activities, but mostly about forming bonds and friendships with other campers, buddies and counselors. Hugs are abundant at this camp.
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