I know it's been a while, and I'm not actually taking new submissions for this series, but I was at 19... 19!! Not only not an even number but it's a PRIME number. I can't have that I needed another one. You understand.
Anyway, today we have J-Nut who has asked that I do not link back to her, but I'm pretty sure most of you know who she is already. And if not, well.... you should.
My son, Moe, is five years old. At the beginning of this year, many of his peers started kindergarten. In my corner of California, parents have several choices for their children, so I watched with envy and interest as I heard about kindergarten tours, listened as friends debated educational philosophies, and discussed the benefits of public and private schools. They waited nervously as children were placed on waiting lists for intra-district transfers, applied to charter schools or private schools, and ultimately made decisions about where their kids would attend. These aren't easy choices. But they are choices, and they are, for parents of typical kids, usually their choices to make.
And even though some didn't get their first choice school, by September, all of the kids were in school.
But not my son. This year, we pulled Moe from school.
Some background: Moe was diagnosed with autism when he was two. When he turned three, while other kids were still going to playdates and attending part time nursery schools, Moe started in an full time autism special day class in our public school district. He spent two years there, happily going to school every day but not learning or making much progress. His aggressive behaviors increased in frequency and his teachers didn't know how to teach him or keep him safe. We wanted a new placement.
I'm sure many of you reading this know the drill. For those who don't, a quick primer:
The Individuals with Disabilities in Education Act (IDEA) guarantees every child in the United States a free, appropriate public education (FAPE) in the least restrictive environment (LRE). Words like "appropriate" are of course left to interpretation. For most kids, this means being in a public school, with varying degrees of mainstreaming (time in a general education classroom) from fully included to, for kids like Moe, who is non-verbal and on the "moderate to severe" end of the spectrum, full time special education. Each child has goals that are part of a legally binding Individual Education Plan (IEP), and data is taken to demonstrate progress toward those goals. My son also had a Behavioral Support Plan (BSP) in place.
Had enough acronyms yet?
After two years in the program with very few goals met, and a very expensive Independent Educational Evaluation (IEE - oops, one more!) done by a child psychologist that we paid for privately, we determined that our school district's program was not appropriate for Moe. If the school agreed, they would then have to find him an appropriate placement, either in another district, through the county, or at a non-public school (NPS). They are legally required to pay for that. In our case, however, the school disagreed. We hired an advocate and a lawyer, and after four IEP meetings (for a total of over 9 hours), we unilaterally pulled him from the program, writing what is called a "ten day notice." This required the lawyer and allows us to pay for a private program and retain the right to sue the district for reimbursement.
The full day non-public programs cost $75,000 or more per year, and that is for the schools that will accept private payment. Most of them will only take school district referrals. We opted to put Moe in a private, half day language intensive program at a cost of over $40,000 a year. We pulled him from that program after a month for several reasons. Essentially, they were not set up to work with a kid like Moe.
So Moe isn't in school. We decided to continue the in-home ABA (behavior therapy) program that was working well over the summer. This is covered, thank goodness, by insurance, at least for now.
I am in the process of trying to find an appropriate program for him. There are several in our area, within about a 60 mile radius. Moe needs a highly structured environment that many programs cannot accommodate. Even so, I have visited seven schools that seem nominally appropriate on paper, but not one seems quite right. Some are too focused on life-skills (laundry, counting money, community outings) with no attempt at teaching academics. Moe is five and I'm not quite ready to give up on his learning to read and write. Other programs are more ABA-based, but are too focused on one on one learning, with very little opportunity for peer interaction. Others focus on communication skills but are not as skilled with behavioral issues. They all have trade-offs, and these are important trade-offs, that could fundamentally alter his ability to learn. We are not talking about who has the best drama or football program.
Furthermore, most of these schools, although certified to take kids as young as five, don't usually have students that young. Kids have to fail so badly or have to grow so big that the schools can no longer handle their behaviors - behaviors that were probably only made worse by the school - before the district will agree to a non-public placement.
Let's say, however, that I decide that one of these programs will work for Moe. We then have to go back to the school district, submit Moe for a battery of assessments (which he'll have to do anyway because he's been in the system for three years), and then negotiate. In all likelihood, we will have to sue the district to get Moe in school. They will pay a lawyer and we will pay a lawyer and our best bet is to end up with a mediated agreement. The school district could disagree on the NPS we chose, offering another instead. They agreement might allow Moe to go to the school we pick but waive other services, like speech therapy or transportation. Or it might be something like "we'll place your kid at this school but then you agree to move out of our district." Because then it becomes somebody else's problem and a new district can't change the placement until a new IEP is agreed upon. Sound ugly? It is. Most parents, by the way, don't win in front of a judge. The bar that schools have to meet to show "appropriate" education is astoundingly low.
And let's say, all of this did get worked out, and Moe got a placement, and then for some reason, the placement didn't work for him. The whole thing starts over.
In another year, I will be researching kindergartens for my typical three year old. I will go to open houses and talk to friends and do my best to find a school that will fit her needs. But it is our choice. And if it isn't exactly right, even if I just send her to the public school at the end of our street that isn't the best but is perfectly adequate, she will be fine. She will learn. And if we don't like the school, we will change. I can't say it will be easy. But I'm pretty sure it won't bankrupt me either.