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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We chuckled when we referred to the two Bens as BO & BM,
their initials forming unfortunate shorthand for human functions not talked
about in polite company. They were in preschool together, neither very mobile
and left on their own much of the time. Ben's mom, Donna, and I bonded over the
mistreatment of our sons, both of us ultimately taking them out of the poor
situation. Donna was going through a divorce at the time and had a lot of
stress on her. She was a single mom trying to help her Ben.
Donna's Ben had a smile that stayed with me. His eyes were part
of that smile and any interaction I had with him, even at that small age of
three, I knew that he was listening and welcomed my attention.
After leaving the original preschool, I lost touch with Donna. A
few years later, we all ran into each other at a children's library and stayed
in touch from then on. Donna wrote a few posts for eSpeciallyBen, and then I
did not hear from her for a few months.
At that same children's library, where we had reconnected, I saw
a mutual friend. She shared with me that Donna had died suddenly. She didn't know
the details, but it may have been breast cancer that came out of remission. I
was devastated. What would happen to Ben? How would he understand that his mom
would not be around? The questions hurt.
Donna's parents stepped in and took over full care of Ben. We saw
him often at summer camp and other random outings. His caregiver, who helped
the grandparents, was loving and sweet to Ben. Having never met the grandparents,
I printed out Donna's posts from the blog and sent them through the
caregiver. It was my way of showing that I cared about her daughter.
Just this week, I received an email from Ben's grandma, a first. I was
excited that she was contacting me. I immediately thought that we could get the
boys together. She said she had news to share, but wanted to be sure that this
was the correct email.
My brain does not go to bad places quickly. I always assume the
positive and I am, for the most part, optimistic. When at 7 a.m., I read the
return email telling me that Ben had passed, I was shocked. I cried on and off
the entire day while taking Ben to the allergist, going to the grocery store
and getting ready for a work trip. I cry now as I write this on a plane.
I agree with what Ben's grandma wrote me. God has a plan and we
may not understand it, but we must trust it. He gives us these beautiful
children who change us forever. I grieve for Ben's family that their time with
their precious daughter and grandson was cut short. I will miss Ben's smile,
but he and his sweet mom will not be forgotten. They are both a part of our
life story, made richer by their presence.
"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
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