In six weeks, Nate will be three and it will be a birthday of a lot of mixed emotions — for his parents. While we will celebrate Nate’s life and his amazing accomplishments, this age marks the end of his services through the State’s in-home therapy program, known in Connecticut as Birth to Three. Services officially conclude the day before his third birthday, at which point his therapy needs are handed over to the public school system. The Public School System.
Before you read this post, let me say here and now that special education teachers are some of the most dedicated, hard working, and talented individuals I know. Most certainly, people don’t pick education as a vocation on a whim – it is hard work with low pay, long hours, and little thanks. Special education teachers do all of that plus work with students who have special needs – special needs that are unique and individual to each child that have to be cared for and managed all while helping the child to reach educational goals jointly agreed upon by the school and the child’s parent or guardian. Let me also say here that, if you thought we spoke in acronyms before, hold onto your pants. Because there’s a whole new suite of them — and we have to become very, very well versed in this new language.
We started down this path early because Nate’s team leader, Ms. Lisa, is awesome. Through Birth to Three, our school district was notified that Nate will join the public school system last summer so that his presence could be included in the budgeting process. We then had our first PPT (Planning and Placement Team) meeting at Nate’s school, where he will begin pre-school this May, in January. We were notified of the meeting in advance through the first page of the PPT form, which notifies all involved of the date, time, and place of the meeting and who will represent the school and parents/student. As part of the initial PPT, we were to receive a copy of FERPA, the Family Educational Rights and Privacy Act, which cites our rights in the system. Instead, we received a Xeroxed piece of paper that gave us the URL where we could find it ourselves. (We were handed a printed copy in the actual meeting but it seemed a little late to be able to brush up on my rights as I sat at the table for the meeting.) Chad took the day off to attend the first PPT and Ms. Lisa also represented us as she was able to give the school a complete run down of Nate’s capacities in the lingo that they all know. We talked about Nate’s strengths and weaknesses and the school gave us a verbal outline of the programs they offer for children his age.
I am very grateful to Ms. Lisa for warning Chad and me about the catch phrase of this meeting prior to us entering the room. If she hadn’t, I would have lost it at the table. What was the catch phrase? “Should your child be found eligible…” or “If Nate is eligible for our program…” See, despite the fact that I have 9″ of discrete trial based data and multiple tests demonstrating Nate’s autism, all conducted by representatives of the State of Connecticut, the public school cannot identify Nate as autistic until they’ve tested him themselves. So, legally, they have to put this caveat on everything (and I do mean *everything*) they say to cover themselves. So, when we learned about the array of services that the school offers, the conversation went something like this:
“Should Nate be found eligible, we offer three programs: a half-day program in a mixed classroom (autistic, speech delayed, and normal ability children), a full-day program in an autistic classroom, and a full-day program that combines exposure to the mixed and autistic-only classrooms. If Nate is eligible to attend, he may be placed in any of these programs. We offer 1-5 days a week for the half-day program (8:30 – 11:30 and 1 – 4.5 days a week for the full-day program (8:30 – 3:30).” And the descriptions of programs and the rest of the conversation went on and on in this manner. Anything that could possibly be construed as an offering of service was proceeded by the caveat. There seriously must be a lot of litigious people out there.
We left the PPT having scheduled two testing dates for Nate. The first testing date was an observation of Nate at his day care with Ms. Lisa present so that the school representatives (we still don’t know who) could observe Nate in a normal classroom environment and see how he interacts (or doesn’t interact) with his peers. The second testing date, which already had to be rescheduled because Tater was sick, is a play-based test at the school administered by school representatives. I’m thinking it’s going to be something similar to the ADOS test….
As I write, Nate is in his observation test. I hope and pray that he performs accurately. Today is not the day to be a superstar. Today is not the day to be a wallflower. Today is the day for Nate to truly demonstrate where he is in his abilities. (And, well, he’s started off the day being his true self by waking up at 3:30 am….) If he performs accurately during both of his assessments, then I believe he’s going to get the offering we want, which is a full-day, full-week program that is mixed: time in the morning with children of different abilities so he can model up after the more advanced kids and one-on-one time in the afternoon in a therapeutic environment. Nate is now working one-on-one with therapists for fifteen hours a week and has been working with these therapists for half of his life. For all of that to go away and for us to expect progression (and no regression) is impossible.
Then there’s the issue of the summer, the giant gaping hole of summer. Because Nate’s therapy is all shifting over to the public school system, that means there’s no more State support outside of the home. So if school’s closed, therapy’s closed too. Our school system offers an Extended School Year for students in special ed, a part-day program that operates five weeks each summer. It’s not everything but it’s something. And yes, we were told that, should Nate be found eligible, he would likely receive placement in the Extended School Year because he can’t go from fifteen hours a week of services to nothing for an entire season.
After all the testing, we reconvene at another PPT on May 3 to hear what the school is offering Nate for services, which is two and a half weeks before his birthday and the day he exits the Birth to Three system. Together, we will create Nate’s IEP (Individualized Education Program), with a legal emphasis on individualized: the law makes it very clear that there can be no cookie cutter programs for those in special ed. We have the right to refuse the offer and work collaboratively to find a program that we all feel best meets Nate’s needs and, God forbid, there are arbitration services already in place should it come to that. We’re hopeful that all involved will recognize what Nate truly needs to bloom and grow and continue on this awesome path that he’s on. And I seriously get teary every time I realize we’re going to lose our team of six awesome women, who have truly made our lives a brighter place.