eSpecially Ben

School has been nothing but a bad experience for us.  You have teachers that have no idea how to work with a child with autism, (although it's supposed to be an autism class).  Most aides that are in the class don't have much of a clue either and most have very minimal training in how to address the behaviors and teach.  We've experienced school for Tye in 3 different states, FL, NY and NC.  It's been awful in all those states.  In NY, they did offer more services, which I had to fight to get with a Special Ed lawyer's help.  He did get really good after school services, like ABA and a behavioral consultant plus additional ST and OT.  Other children in the same school district didn't receive the same level of services because school districts don't give anything without a fight.  The public school system in NY was very poor.  If there were openings in the private school setting the district would have sent him there, but of course there were no openings.

This month the writers for the eSpecially Parents series will focus on their child’s experience with schools and the educational system. I have written a lot about Ben’s experiences at school. For the most part we have been very happy with his teachers, staff and academics. In preparing to write this post, I thought about why we have had good experiences and what went wrong when we did not. Here are three areas that I think help to summarize why we continue to  be happy with the public school system. Expertise - I know that I am an expert on Ben because I have known him the longest and involved with every detail of his life, but I also value that the people working with Ben are most likely experts about how to best teach him. They are trained in educating children with needs such as Ben and have special techniques that work.  I begin with the assumption that they went into this field because they have a love for this particular profession and the work that they do. Rela

Remember those words, "Left Back" when you were in school. To me it meant a kid did not do well in school and had to redo the grade again. The negative connotation of that phrase is still strong in me. We made the decision to "retain", the politically correct word for being left back, Ben for the upcoming school year. He is repeating 2nd grade. Ben will be able to attend school until he is 21 years old. It was recommended to us that Ben should repeat a grade three times - once in elementary, middle and then high school, spreading out the years. At first I was upset by it. Now that Ben is in class and doing well, I have not given it another thought. It is best for him and that is what is most important. Anyone have thoughts about retaining a child during his or her time in school?

Ben ran down the pier in his walker, until he hit this feirce wind. A few seconds of it and he turned right around!

Two years and lots learned. Here's a shot at just a few of those lessons: Perspective - Each time I record a piece of our family's history here, I am able to see the growth, changes and patterns that are a part of our life. Today, when I write about Ben's amazing progress with walking, I can compare it to a year ago when our biggest concern was seizures and finding the right medicine to control them. Ben's walking had taken a "step backward" and I had not even realized it until he started walking so well in May after a change in medication. A year ago, I was distraught over Ben's school closing, and now he may be at a place that will provide him with as much, if not more, opportunities for growth and independence than his old school. Introspective - Keeping up with posts for a blog is time consuming. To be consistent with current topics and regular posts is difficult. Finding the right topic to write about, ones that will interest readers, i

 This is a letter I received last week from a company where Ben gets his orthotic braces made. I had been frustrated with the entrance to the building - no handicap accessible doors - and said so in their patient satisfaction survey. I am glad for this response and really appreciate the office manager writing to tell me about the changes being made. Advocating is a tough business and it does not always get you the results you want or expect. And sometimes, people do not react the way you think they might - both positively and negatively. I am checking this one off as a "Success."  

The photo above is just one from the weekly CD we receive from Ben and Logan's Sunday School teachers, Mr. Terry (photographer) and Mr. Jim. We also get an email telling us about the happenings within Sunday School and lessons to be studied for the following week. The emails, photos and updates are all wonderful, but they do not convey the love, unconditional support and pride that Mr. Terry and Mr. Jim have for Ben. You get that from talking with them. It brings tears to my eyes just thinking about how much Ben is loved every Sunday when he walks through those doors. This love carries through to the other kids in the class - the other boys and girls treat Ben with respect, love and friendship. As for Ben, he joins in the class, sitting, listening, eating and occassionally taking a break by walking down the hall to visit his little brother Sean, and sneaking a second snack from that wonderful Sunday School teacher...but that's a post for another day.