As sad as it is, the children most likely to be helped by a school system or program are the ones whose parents push, or advocate if your prefer, on behalf of their child. The old saying “the squeaky wheel gets the oil” is totally true, whether people want to admit it or not.
When our oldest son was in elementary school, they made several big changes to the school system’s special needs program. They were moving the ASD program to another school, combining it with another, which would limit the number of students in the program. This would in turn, reduce the number of paras and the amount of services offered.
They really struggled on deciding what to do with the last two students – our son and his friend. Both scored very similarly on all of the relevant tests, both were clearly on the spectrum. Both were making progress, however only one would make the cut to stay in the special needs program, the other would have to go into a regular classroom, but would get to have a para with him. Unfortunately, as you might know, this would not be the same.
My husband and I attended every meeting, every field trip, stayed in contact with teachers and administrators, pushed on every IEP to get everything our son needed and knew everyone that interacted with our son by name and chatted with them in person every time we saw them. We took time off work to make sure we could be there, and even attended the “meet the teacher” events, even though we already knew them from the previous years and meetings.
In the end, our son made the cut and got to stay in the program. His friend had to be transferred into a regular program. The administrators told us that they picked our son because we took a more active interest in his education than the other boy’s family and that our son would have the greatest possible chance for success.
Rocking the Boat
Sometimes when you advocate for your child, you have to “rock the boat”. Maybe that’s what they were afraid of if they cut our son. They knew we’d be down there demanding to know why the IEP wasn’t being kept…something that I wish I had known more about and could have let the other mother know about as well.
Administrators love to say “that’s not the way it is done”, “we’ve never done it that way before” (my husband’s least favorite phrase) or “that’s not what that was designed for.” But it’s called the autism spectrum for a reason. No two people on the spectrum are exactly alike. We can’t use a generic, standardized method for something that is so individually specific.
One of our sons had attended summer school for years. One year they said he didn’t qualify. We inquired as to why not. They said that summer school was now only for students who scored poorly on the previous year’s standardized test.
We ended up getting the vice principle to come into the meeting, and I explained that our son needed the summer school for knowledge retention and which was a documented issue on his IEP. He replied that there was a cost for each student who attended and there wasn’t enough money to include our son. The school system didn’t want to spend money for summer school except in places where it helped their standardized tests.
Now in Florida (I’m not sure if this is the case in other states), each student with an IEP is allotted extra money from the state based upon the services listed in their IEP. I inquired as to if they had used all the money allotted to our son and if we could use that to “purchase” his spot.
The assistant principal replied that they had never used those funds for this program before. I persisted and asked if it could it be done. A short time later we were told that our son did have funds left over and we could use it to enroll him into the summer program. (We found out later that any funds not used, got put into a general fund for the school to use, which is why you have to make sure they are doing everything required, and not just adding to the school’s general fund.)
Sometimes you’ve got to think out of the box to do what’s best for your child. Most administrators just look at the bottom line thinking of expenses, not what will help your child. If we don’t stand by our kids and fight for them, who will? We’ve been lucky enough to find many people who could and would help, but that’s not always the case – and those people come and go as they transfer between schools, programs and grades.
As parents, we are the constant in our child’s life, and we can always advocate for them.
