Charlie woke up at 5am and ran into our room, his face joyful and eyes screwed up in a grin. He chatted and curled up in his big blue blanket until 7.15am and hopped out onto the "red school-bus," green apple in a baggie. His teacher was on vacation last week and he had said her name a few times on Sunday, with an expectant look in his eyes about seeing her today. He is moving slowly through Lesson 2 of the Edmark pre-reading program but progressing. At ShopRite, Charlie retrieved the shopping cart and, while occasionally ramming it onto my foot, pushed it through all the aisles, loaded up the car, and carried in three bags' worth of groceries. I thought he was enjoying his usual pre-bedtime routine of listening to iPod music and looking through his bucket of photos of my parents and his old therapists and him as a 4-year-old in St. Louis when I heard a sad yowl: Charlie was calling for something, more shrimp? an apple?--and when I gave him the shrimp, he threw it.
Charlie picked up the shrimp and ran back upstairs, crying, under the covers. I put the bucket on the nightstand and we had a talk.
"Charlie, I want you to keep the photos. They're your memories and that's good stuff. We used to throw stuff away in the garbage because you had trouble and you used your head. But with school and everyone at home---you don't need to any more. We can keep the photos. Keep the memories."
Charlie had his face smooshed into a pillow. He raised his head, made eye contact, said "muh!" and leaned his puckered lips towards me. I gave him a kiss on his cheek; a few minutes later, Charlie turned to me, face so peaceful, and said, with just a slip of a grin,
"I want Barney! We hah' Barney turn on, we don' hah' Barney. All done!"
We don't have Barney--the stuffed animal, the DVD's, the CD's--anymore but Charlie has his memories and how well he has been talking and connecting.
But about Charlie's school closing at the end of June.
In the middle of February, we were informed that Charlie's private autism/ABA school will close in June. We are now scrambling, worrying, scrapping, for a school placement that will be as appropriate and as good as Charlie's current situation is. We have tried very hard not to talk about this in Charlie's presence as he clearly loves the place, his teacher, and all the highly qualified and more than dedicated staff. As evinced by his worries during the winter break about not going to school, we know that Charlie will be beyond sad---I fear inconsolable---when June comes and he realizes that "school is all done."
We are hardly alone among autism families in desperately seeking an appropriate school placement for our child with autism. Almost five years ago, the three of us packed up our green station wagon and left a life secure in everything except--"except"--a good future for Charlie. We were living in the suburbs of St. Louis at the time and there was no school that could truly meet Charlie's educational needs, that could truly offer the challenging academic curriculum that he has been thriving on at his new school. Jim gave up a tenured full-professor position; I had resigned from my tenure-track assistant professor position; we ended up in a condo off a busy highway in central Jersey with the reassurance that we could always move into Jim's parents' basement.
We moved into our current, lovely house exactly three years ago and Charlie seemed to be managing in a public school autism classroom with mainstreaming in music and library. But it was a year ago that many things--many realities--came crashing in on the three of us.
Charlie has only been attending his new school since early December but, in a very short while, he has been transformed. His entire demeanor has changed; he is happy, going to school, at school; he is peaceful at home and his face is the evidence. He talks up a storm; he is more connected to us and all the people in his life than ever. The difference is measurable. It is tremendous and, with our lovely boy--as his teachers have been calling him--our little family's life has alike been transformed.
To close an autism school when truly appropriate schools for autistic children are too few and totally far between, when so many children just get by in classrooms with caring but untrained staff, when so much beautiful potential is squandered before anyone realizes that it exists and our children's "education" becomes "functional" (at the age of 8 years old) rather than "academic": To close a school whose mission it is to give autistic children all this, is to deny our children their educational rights. It is a tragedy.
I do not know how I will tell Charlie that his school is closing. I am sure that he has picked up on what people are saying and that the other children have, too. We have already begun to look for a new school for Charlie and know that his home ABA program and regular VB and speech and OT sessions will help him through a transition I tremble to think about. More than anything, we simply cannot understand how a school that so many children need to be all that they can be will be gone within a few months.
Charlie loves his school. His teachers understand him and, while accepting Charlie as Charlie, never hesitate to challenge him to keep learning. For such a school to "become history" is unthinkable, but emblematic of life on the long roads of Autismland.