Advocate For Project Lifesaver International

Posted on October 26, 2011 by elle9132


I’m going to go off topic again today because of something that is happening now, not ten miles from my house.  A nine-year-old child with autism wandered away from his dad at a local park three days ago, and there is an intense search going on to find him.  Robert Wood Jr. is non-verbal and one can only imagine the fear he must be feeling.  Hundreds of local residents are showing up each day to help with the search centered in an area which is heavily wooded, has rugged terrain and water.   Many who can’t participate in the search are conducting prayer vigils in every effort to help this boy

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Incidents like this make all of us who are close to the special needs community wonder what can be done to prevent this from happening.  I know that there have been times that I have turned my back for just a second and Ben has disappeared.  The few minutes it takes to find him are moments of sheer terror.  I can only imagine what Robbie’s family is going through.


Project Lifesaver is an organization whose mission is to work with trained public safety agencies to find wandering or lost people with cognitive conditions.  Please watch and advocate for Project Lifesaver, or services like it to protect our loved ones who cannot protect themselves.

www.projectlifesaver.org

 

Posted in Cerebral Palsy, Cerebral Palsy, Disabilities, Intellectual Disabilities, Intellectual Disabilities, Special Needs, Trisomy, Trisomy 9, trisomy9 | Tagged , , , , | Leave a comment

Working on Ben’s Feeding Disorder

Posted on October 25, 2011 by elle9132


Ben’s therapy during our years in Charleston had three main focuses; gross motor, speech and occupational.  Ben’s occupational therapist at the Charles Webb Center worked diligently to take the recommendations from the barium swallow test he had before we left Richmond and help him work his way up to regular eating habits.  Besides the fact that she had to be aware of Ben’s special sensitivity to the texture of his food, her efforts were further challenged by two other problems.  First, Ben’s eyesight at close range was not very good and as she began to introduce solid foods into his diet she noticed that instead of looking at the food on the plate he would use his hands to feel around the plate for the food, pick it up and put it in his mouth.  Second, the palms of his hands are small and he has very long fingers (a sign of the trisomy9).  In addition, as he grew the tendons on a couple of his fingers were beginning contract (a sign of the cerebral palsy).  Both of these  factors made it next impossible to teach utensil feeding at least for the time being.  However, according to his therapist, this was probably not a bad thing.   She felt that finger feeding would be a good start at developing his fine motor skills and at the same time work on sensitizing his fingers.  It wasn’t until Ben began to wear his glasses regularly that he actually began to look at what he was eating

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. To this day, when he is tired he will revert back to this old habit.   It wasn’t long before Ben graduated from the pureed food to slightly lumpy food (spaghetti was a favorite) and the therapist was telling Dennis and me that Ben should start feeding himself as much as possible.  As one can imagine this made for some very messy dining; and Ben was loving it.  Dinner was just like arts and crafts class.  He soon became quite good at the fine art of face painting.

 

Ben eating spaghetti; a favorite

Chocolate Cake...I think


Posted in Cerebral Palsy, Cerebral Palsy, Disabilities, Intellectual Disabilities, Intellectual Disabilities, Special Needs, Trisomy, Trisomy 9, trisomy9, Uncategorized | Tagged , , , , | Leave a comment

The Charles Webb Center

Posted on October 21, 2011 by elle9132


The Charles Webb Easter Seal Center had been doing a marvelous job serving the Charleston disabled community for decades.  It was a perfect example of how privately run charities can serve the community much better than the government.  As the government took on more of the responsibilities the private sector charities began to get squeezed out of the picture.  About a year after we arrived in Charleston we began to hear about changes that were on the horizon for the Charles Webb Center

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.  Easter Seals would be pulling their support and we began to hear rumors that the board of directors was in secret negotiations with Roper Hospital to buy our building.  The center was housed on a prime piece of property at 325 Calhoun Street, which was almost directly across from the hospital and they had their set their sights on our building.  Unfortunately, while the board was talking to Roper, they certainly were not talking to the parents.  Rumors were flying and it created some very bad feeling between the parents and the board. We spent hours attending meetings planning our strategy to confront the board to find out what would happen to our wonderful program.  The school system was still completely clueless on how to handle the younger children and our fear was that our kids would be left with nowhere to go.  The

parent advisory committee along with the administrators at Charles Webb began to sketch out plans for an integrated daycare/after school program called “A Step Ahead”.  We were prepared to take the program private if we lost support from the board, because there was no reason this program could not continue to be viable with or without the Charles Webb board.  Our efforts began to get the attention of some in the media and since many on the board were prominent members of Charleston society things began to get nasty.  It all came to a head when one of our parents saw a public notice hidden in the newspaper announcing a Charles Webb board meeting, yet none of us had been given any notification.  Of course we sent our number one advocate, Dennis, and he witnessed the vote to sell the building.  However, he was able to convince the board of the viability of the program and it was agreed that a new location would be located.  The Charles Webb Center would continue after all. The “A Step Ahead” business plan we had developed was soon implemented and our school continued to grow.  Today the program is still housed in the same facility we moved to almost twenty years ago and the program is still thriving under the Charles Webb name.

Posted in Cerebral Palsy, Cerebral Palsy, Disabilities, Intellectual Disabilities, Intellectual Disabilities, Special Needs, Trisomy, Trisomy 9, trisomy9 | Tagged , , , , | Leave a comment

From Advocacy to Activism

Posted on October 16, 2011 by elle9132


Life for parents of special needs children is one of advocacy out of necessity. Each time we attend an IEP meeting or insist that a healthcare professional make us part of the decision-making team for our child’s care, we are being an advocate. For some, there is a natural progression from advocacy to what I call activism. This is when we start to look at the conditions of our community  and take part in the movement to make those conditions better. When we arrived in Charleston Dennis and I had spent the first two years of Ben’s life being advocates with the doctors and school professionals. While Ben’s situation was set for the next couple of years we saw that there was much work to do to make sure that young people would have a Charles Webb Center to come to in the future as the school system slowly took control of the care for the youngest “at risk” children. Our fear was that Charleston County would begin to operate as the Richmond City schools making wonderful programs like the Charles Webb Center practically obsolete. Our activism really started as Dennis’ activism. While I was busy throwing myself into the challenges of a new job, Dennis was not only looking for his new job, but becoming the Charles Webb Center’s favorite parent advocate. He was perfect for the job because he is smart and very articulate. He was able to communicate exactly what other parents wanted to say, but were not always able to. Within months not only were we both active members of the Charles Webb Center parent advisory council, but Dennis had been appointed by Governor Carroll Campbell to the Disabilities Board of Charleston County. There he began to work not only for the good of school aged children, but became involved in program and group home access for adults with disabilities

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. This was a whole new ballgame; one that gave Dennis a firsthand look at how frustrating the bureaucracy of both state and local government can be. Through his work with the Disabilities Board we began to see that this struggle we were involved in would not end when Ben was done with school. This would be a lifetime commitment. It would be up to us to stand up for Ben’s rights until we were no longer able. What an awesome responsibility!

Posted in Cerebral Palsy, Cerebral Palsy, Disabilities, Intellectual Disabilities, Intellectual Disabilities, Special Needs, Trisomy, Trisomy 9, trisomy9, Uncategorized | Tagged , , , , | 1 Comment

A Parent’s Worst Nightmare

Posted on October 13, 2011 by elle9132


Today I’m going to fast forward twenty years to address a topic that has come to the forefront in recent local news. It’s the story of the continued abuse of an autistic boy at the hands of two Bedford County Virginia school system employees. This incident brings to light the concerns parents of children who are non-verbal have when they are forced to trust others with their care. I can’t stress enough how careful parents need to be when they hand their children over to others, even for a short bus ride to school. Most of us can’t imagine how anyone would treat another human being, much less a child, with such cruelty. Unfortunately there are cruel people in the world. This is why we must be vigilant in our efforts to retain good people in the school system to care for and educate our children with special needs. This is not an easy job, and it takes people with an abundance of patience and love (not to mention training to deal with a situation like this) to do it well. These two women on the bus were convicted of misdemeanors and served very little time for their crimes. This incident happened three years ago and the tape which showed this parent’s worst nightmare came to light after months of “stonewalling” by the county. I feel lucky that during Ben’s days in the public school system and now in his day support program we have been and are blessed with very good people who care for him. That’s not to say there hasn’t been more than a few times we have had our frustrations with the school systems. My recommendation to all parents of children who can’t report to you what is going on at school or on the bus; if something doesn’t seem right it probably isn’t. Our children try to let us know what is wrong in ways other than with words. We must always be looking for those signs

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Posted in Cerebral Palsy, Disabilities, Intellectual Disabilities, Intellectual Disabilities, Special Needs | Tagged | 2 Comments