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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Summer is here in the Carolinas
Kickstand Burgers, Charlotte, NC
Summer is here and we have been busy. Ben has been in the pool more times than I can count. Logan and Sean have already been to camp, and we all went on a short vacation over Memorial Day.
I have been writing regularly for an online site, CharlotteFive. I have been fortunate to grab a few other writing assignments here and there. It has been tremendous fun, but it has kept me busy. I have not been able to post here as often as I would like.
Here are few quick photos to relieve me of the guilt I feel for not posting regularly:
"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
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
A few weeks ago I attended a workshop presented by a behavior therapist. As it turned out, I went to a conference on the same topic over a year ago. I will describe what I have taken away from these methods in my own words - but please take a look at the links I have provided below. After I learned about this, life with children made a lot more sense to me. Not that this is earth shattering material, but it helped me to better understand the hows, whats and whys of behavior in children, and occasionally husbands. I am in no way an expert in this - just a parent who wants to share a behavior strategy that has worked in our home. I hope to inspire others to explore it further. Any errors in information comes from me and cannot be blamed on the presenters. Also, you may have seen ABA - Applied Behavior Analysis - connected most often with Autism - please do not let this deter you if your child is not autistic. I use these methods with all my children, none of which are labeled au