Saying Goodbye to Our Friends at The Charles Webb Center

Posted on December 13, 2011 by elle9132


Finally the day came that Ben and I would join Dennis in Richmond. One of the hardest parts of this was that we had to leave our friends at the Charles Webb Center. Dennis documented our last day with the following pictures (note the spots on Ben’s face; the aftermath of chicken pox):

Cupcakes For Everyone

Ben's Class

Ben Leaves his Mark at Charles Webb

GOODBYE!!

Goodbye to all of our friends at Charles Webb

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Preparing for the Move

Posted on December 7, 2011 by elle9132


Once the decision to move was made there was much work to do.  Our first choice would be; where do we go?  This was not difficult.  Except for the experience we had with the
city bureaucrats, we both loved Richmond and considered it our home.  We knew going back to the City of Richmond was not an option.  The three outlying counties all had fairly good reputations when it came to school systems.  We felt Chesterfield was growing too quickly, so that narrowed it down to Henrico and Hanover.  Dennis and I made a couple of visits to tour schools in both counties and while Henrico’s programs were impressive we decided on Hanover.  Western Hanover County was still quite rural and we had always wanted to buy property with a lot of land.  Because there wasn’t a huge population, the
school administrators seemed to be more accommodating when we discussed Ben’s special needs as well as our hopes for him.

Once we found where we wanted to be, the next hurdle was the all-important question;
how will we support our family?  This problem was surprisingly easy to overcome.  A
friend of ours, who also happened to be one of Dennis’ former bosses, had started his own business in 1991.  When Dennis told him we were planning to return to Richmond our friend made room for him on his sales team.  He also gave me some contract work during my ensuing job search.

The next task we needed to complete was to get Ben’s records in order.  That meant putting in place a signed IEP.  We called the county to schedule another meeting and also mentioned that this would be a formality since we would soon be leaving Charleston.   You can bet that there was a party that evening at the Taj Mahal,
because Dennis and I had become major thorns in the sides of the school administrators.  Our next IEP meeting was remarkably easy due to the fact that they knew it would not be them who had to administer the plan.

The transition for me was going to be a little more difficult.  I was not in a place where I felt I could give short notice to my employer.  We decided to put our house on the market and I would stay with Ben in Charleston for a few months while I helped to find and train a replacement.  Dennis would head to Richmond to work and search for a house.  The problem with our plan was the timing.  A few months before our decision to leave, the government’s Base Realignment Commission had named Charleston’s naval base as one that would be closed.  The market had been flooded with houses, not to mention the mini-recession that resulted.  Our house sat on the market for several months until after I left we actually had to rent it.  That posed an additional challenge when the house finally did sell…..but it did….eventually; and the renters left….eventually

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Should We Stay or Should We Go?

Posted on December 5, 2011 by elle9132


After four years of putting down roots in Charleston the decision to leave was a little difficult, but then again we really had no choice.   It was clear that the Charleston County School System did not have the best interest of children with special needs as one of their priorities.  Dennis and I were both on the verge of burn-out and we just did not have the resources to fight the deep pockets of the school system  (although the pockets were much less deep since they built the”Taj Mahal”)

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There were many pros for staying.  Plus leaving meant I would most certainly be committing professional suicide.  Looking back,  we still would have made the same decision.  Our fight for Ben would not end, but by returning to Virginia it got a lot easier.

While we did not sit down and do a “Ben Franklin”; this is more than likely what it would have looked like.  While there were more Pro’s for staying, the two Con’s were “deal breakers”.


Posted in Cerebral Palsy, Cerebral Palsy, Disabilities, Intellectual Disabilities, Intellectual Disabilities, Special Needs, Trisomy, Trisomy 9, trisomy9 | Tagged , , , , , | 2 Comments

Ben’s First Day of School

Posted on December 1, 2011 by elle9132


We, quite frankly, had no idea what to expect on Ben’s first day of school.  To this point we had been showered with good fortune by having available to us places like the Cerebral Palsy Center, Children’s Hospital and finally  the Charles Webb Center.   All we knew was
that we were nervous about what may be ahead for our little guy.

Our first concern was the bus ride.  Now, I know there isn’t a parent out there who isn’t at least a little nervous the first day they put their kindergartener on the bus.  Our concern was magnified by two facts.

  1.  Ben would be traveling out of the district, thus the ride would probably exceed the normal thirty minutes.
  2. Ben was non-verbal.  The normal kindergartener is about five years old and able to verbalize problems they may encounter on the bus.

Of  course the natural thing to do was to follow the bus on the first day.  After putting
Ben on the bus we both jumped into the car and followed behind.  I felt a little self-conscious because it almost seemed like we were spying.  But this was our child and who cares if the bus driver gets annoyed; which she didn’t.   I’m sure we aren’t the only parents who have done this.   Dennis has made this practice a habit and to this day when Ben’s transportation situation changes, Dennis will be right there following behind.  I now let him do it alone, because I never developed an appetite for the art of spying.  If I remember correctly the ride turned out to be between forty-five minutes to one hour.   Which wasn’t terrible, but it was long.   He seemed to do fine and both the driver and aid were very kind to him.

The issue we ran into was when we reached the school.  We were absolutely appalled to find out that Ben’s classroom was in a trailer (reference the “Taj Mahal  in last week’s post) a good fifty yards from the main school building.  On top of that; it was not handicapped
accessible.  Our son, who was barely  walking with a walker, was being carried in and out of the classroom!  In true non-compliance of  LRE (Least Restrictive Environment) we were  told that out of convenience they would have their lunches brought to the trailer.  There would be almost no mainstreaming for Ben.  All we could think of was the school administrators saying that if we wanted them to comply with the law, we would probably have to sue

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This was the  proverbial “straw that broke the camel’s back”.  They had worn us down and we realized that the only way to fix the problem would be to move.

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Our Second Try for a Successful IEP

Posted on November 23, 2011 by elle9132


Our next IEP with Charleston County Schools came after we had come to a semi-agreement with regards to transportation.  The Charles Webb Center had moved to its new site and a school in that district had a special education program which Ben could attend and be transported to Charles Webb afterward.  So let me get this right.  They were not able to transport him after school to a program out of our district, but they were able to transport him to a school out of our district so he could be transported to the same after
school program.  Whatever!

Prior to the IEP Dennis and I attended a workshop to help us prepare for the
process.  We truly wanted to understand why we got so much resistance to almost everything we requested.  I found some handwritten notes I had made during the workshop:

  1. Be Kind.  This is probably one of the most important recommendations that was made to us; that admittedly we did not always follow.  Our frustrations got the best of us at times.  Trust me the old adage “you catch more flies with honey” is true.
  2. Make it clear that you want to deviate from computer generated goals.  I’ve mentioned before that we were met on more than one occasion with a team who showed up with a pre-generated IEP.  Dennis and I contacted them in advance and asked that all recommended goals be sent to us so we could consult with our teachers and therapists
  3. Assistive Technology – Make sure both forms are checked.  Both communications system and writing system.
  4. Make sure speech therapist has experience with alternative forms of communication.

When time came for the IEP, we had made notes on all the goals being proposed by the school teachers and therapists.  We had added our own and expressed concerns over ones that we felt were not appropriate or attainable.  We really felt that we had covered all of our bases

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To further our case we felt that it was important that everyone in the room remember exactly why we were there.  What better way than to set a picture of our adorable boy right in the middle of the table.

How could anyone resist this face?

Since we had discussed the goals in advance, the meeting went smoothly until we got to the specifics on what services would be provided and for how long. We suspected that this would be a problem because the county school board was facing a budgetary crisis and was systematically eliminating their ranks of staff therapists. Our fears were confirmed when they gave us times.
Speech – 50min.wk
Occupational Therapy – 30 min/ bi-weekly. 15 min/month consult
Physical Therapy – 30 min/ week. 30 min/ month consult

In addition; no assistive technology or augmentative communication devices were checked as necessary!

We could see how they could argue that physical therapy was so low because they needed to see an educational benefit to any services provided. However, speech and occupational therapy were of their very essence educational. This was such an important part of Ben’s development.

Then came the LRE Worksheet (Least Restrictive Environment).  The extent to which they were willing to mainstream Ben with non-delayed students would be as follows:

With regular Kindergarten class – 40 min/wk

Assemblies with 5 year olds – 50 min / wk

Library – 1 x/wk

Recess

Total mainstream average 2 hours / week

The reason there was not more time with regular class was stated on the form:

“In order to meet Bennet’s needs, time would be taken away from peers in large group setting.”

Did I mention we are talking about Kindergarten?  In later years in elementary school in Hanover County when there was a more structured educational environment he was able to be mainstreamed much more than this!
The school administrators would not budge on the times and we once again refused to sign the IEP.  When we mentioned our concerns; that they were not in compliance with the LRE provisions of the law, their response was that while it might be true, we would need to sue them to get the results that we wanted.

We did however agree to another meeting for further discussion and agreed to enroll Ben in school. This whole attitude was particularly frustrating because of a major controversy that was playing out in Charleston which we felt was contributing to Charleston County’s budgetary problems and the diminishing ranks of school therapists. Charleston County had just built a massive administration building housed on a very expensive piece of real estate in downtown Charleston. It was so extravagant that it was quickly dubbed “The Taj Mahal”. We were disgusted at the thought of the layoffs and kids having to attend classrooms housed in trailers while twelve million dollars was being spent on a building to house administrators.

Next up Ben’s first day of school and more headaches for us…

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